As you have probably figured out by now, cameras and posting them on the internet are not my strong suit. Both of our daughters are much better at using their cameras (mine tends to stay in my purse) and putting them online. If you go to www.heatherwhy.blogspot.com or www.landoflyle.blogspot.com you can see more pics of Hannah.
We spent Christmas with the Lyles and had a great time. Auntie Heather was there and we all tried to share Hannah among ourselves. She still likes to stay up at night and sleep during the day, but hopefully that will change soon.
Wendy
Sunday, December 28, 2008
Friday, December 12, 2008
She's here!
Hannah Mae Lyle arrived on December 9th at 3:02 PM. She weighed 6 lbs 15 oz. and is 20 1/2 inches long. Mom, Dad and Hannah are all doing great!
Peter and I will be spending the next few days with Hannah to help her settle in with Mom & Dad.
Peter and I will be spending the next few days with Hannah to help her settle in with Mom & Dad.
Wendy
Thursday, December 4, 2008
Good news and still waiting
Good morning,
We got some good news yesterday - Peter's one year bone marrow biopsy looks great! No problems noted. He should be getting his flu shot soon and all of his pediatric immunizations too.
His transplant was just over 13 months ago and at times it's been a wild ride. Thankfully it has all been positive for the past 5 - 6 months and should continue on that way. When we saw the dr. last month he said Peter probably has chronic GVHD (graft versus host disease). This happens alot and it just means he will probably have skin flareups, eye irritations and stomach problems for quite awhile. They are all managable with hydrocortisone creams and being careful what he eats, so we will just have to learn to live with it and deal with it as necessary. He is still not gaining any weight so we are trying to increase his calorie intake during the day. The problem is, he says, is that he forgets to eat - I should be so lucky. It seems that we have our eating habits reversed; he likes to eat what I should be eating and vice versa!
We are still anxiously awaiting Ziggy, aka Kim & Todd's baby. Her due date is tomorrow but the dr. predicted she would be born by Thanksgiving. Oh well, she'll get here when she gets here. I'll keep you posted.
As usual, I apologize for not updating more often, but as Heather tells us frequently, we are boring!
Wendy
We got some good news yesterday - Peter's one year bone marrow biopsy looks great! No problems noted. He should be getting his flu shot soon and all of his pediatric immunizations too.
His transplant was just over 13 months ago and at times it's been a wild ride. Thankfully it has all been positive for the past 5 - 6 months and should continue on that way. When we saw the dr. last month he said Peter probably has chronic GVHD (graft versus host disease). This happens alot and it just means he will probably have skin flareups, eye irritations and stomach problems for quite awhile. They are all managable with hydrocortisone creams and being careful what he eats, so we will just have to learn to live with it and deal with it as necessary. He is still not gaining any weight so we are trying to increase his calorie intake during the day. The problem is, he says, is that he forgets to eat - I should be so lucky. It seems that we have our eating habits reversed; he likes to eat what I should be eating and vice versa!
We are still anxiously awaiting Ziggy, aka Kim & Todd's baby. Her due date is tomorrow but the dr. predicted she would be born by Thanksgiving. Oh well, she'll get here when she gets here. I'll keep you posted.
As usual, I apologize for not updating more often, but as Heather tells us frequently, we are boring!
Wendy
Sunday, October 26, 2008
Like a tortoise, slow but sure
All continues to improve, but very slowly. We have to look for changes now from month to month instead of day to day or week to week; and the changes are still going in the right direction.
Peter goes in to the office several days/week now and works usually 5+ hours. When he's not in the office, he works from home. He continues to go to PT twice a week and they really bust his chops!
We've been back and forth to Raleigh several times lately, for a party and yesterday for Gretchen's wedding. She was a gorgeous bride and it was a beautiful wedding and great reception. Her mom Katy looked gorgeous too and her Dad Bill was very handsome in his tux. We wish them all the best!
We go back to Duke on Nov. 5th for Peter's one year check-up. His actual new birthday is October 31st - he'll be a year old and ready to start his vaccinations all over again!
My walk for the Leukemia Society is this Sunday in Raleigh. I can't guaranttee anything but I'll do my best!!!
Peter and I are getting involved in a donor drive here in Wilmington. There is always a need for stem cell donors and after meeting Mildred (another stem cell transplantee) we learned that minorities have a harder time finding donors because not as many sign up to be possible candidates. This drive will be targeting minority groups but anyone who wants to can sign up.
Our puppies are huge and crazy. They keep us both hopping.
And last, but not least, our granddaughter is due in 40 days - can't wait to see her!
Wendy
Peter goes in to the office several days/week now and works usually 5+ hours. When he's not in the office, he works from home. He continues to go to PT twice a week and they really bust his chops!
We've been back and forth to Raleigh several times lately, for a party and yesterday for Gretchen's wedding. She was a gorgeous bride and it was a beautiful wedding and great reception. Her mom Katy looked gorgeous too and her Dad Bill was very handsome in his tux. We wish them all the best!
We go back to Duke on Nov. 5th for Peter's one year check-up. His actual new birthday is October 31st - he'll be a year old and ready to start his vaccinations all over again!
My walk for the Leukemia Society is this Sunday in Raleigh. I can't guaranttee anything but I'll do my best!!!
Peter and I are getting involved in a donor drive here in Wilmington. There is always a need for stem cell donors and after meeting Mildred (another stem cell transplantee) we learned that minorities have a harder time finding donors because not as many sign up to be possible candidates. This drive will be targeting minority groups but anyone who wants to can sign up.
Our puppies are huge and crazy. They keep us both hopping.
And last, but not least, our granddaughter is due in 40 days - can't wait to see her!
Wendy
Wednesday, September 17, 2008
All's well
Things continue to progress well here. We went to Duke last week to see Dr. Horwitz and he was very pleased with how Peter is doing. We were abit concerned about his lack of weight gain - he only weighs 140 - but the Dr. thought it was a pretty good weight. Blood work was great, platelets at 105 and all else looked good. Some of his meds were decreased and we don't go back now until November. That will be for his one year check-up at which point they will take another bone marrow biopsy, decrease more/eliminate most of his meds and then only check every 6 months, we hope.
We are starting to get into a routine around here which is good. Peter goes to work 2-3 days/week and works the rest of the time from home. The puppies and I walk for at least a half hour in the morning and all 4 of us walk for 15-20 minutes each night. They are just full of energy and we are still "discussing" who is the "pack leader". With a grandbaby coming in December I have been busy shopping and making all kinds of things - diaper bags, "Hooter Hiders", bibs, etc. Kim looks great and says she feels well also.
Next week Peter's mother and 3 of his 5 sisters are coming for a visit. Most of them have not seen him since the transplant. Kim and Todd, and Heather will be down for the weekend and we will have a baby shower for Kim.
I go to the beach next month for a week so Peter and the puppies will be on their own. He is strong enough now that he can handle them by himself without too much trouble. I won't be far away so if needed I can come back.
That's all for now.
Wendy
We are starting to get into a routine around here which is good. Peter goes to work 2-3 days/week and works the rest of the time from home. The puppies and I walk for at least a half hour in the morning and all 4 of us walk for 15-20 minutes each night. They are just full of energy and we are still "discussing" who is the "pack leader". With a grandbaby coming in December I have been busy shopping and making all kinds of things - diaper bags, "Hooter Hiders", bibs, etc. Kim looks great and says she feels well also.
Next week Peter's mother and 3 of his 5 sisters are coming for a visit. Most of them have not seen him since the transplant. Kim and Todd, and Heather will be down for the weekend and we will have a baby shower for Kim.
I go to the beach next month for a week so Peter and the puppies will be on their own. He is strong enough now that he can handle them by himself without too much trouble. I won't be far away so if needed I can come back.
That's all for now.
Wendy
Saturday, September 6, 2008
Hanna et.al.
Well, we survived tropical storm Hanna. The winds were around 45 mph at 5am with higher gusts and we got some rain, but that was all. It seems that our friends in Raleigh got hit worse than we did.
Things are still progressing here. Peter is driving now. He drives to work 2 days/week and to his therapy appointments. His "core" strength and his balance are both continuing to improve. He feels pretty good most of the time, but must remember to rest when tired.
We go to Duke on the 11th and hopefully they will reduce some more of his meds. He's hoping to be allowed to go to the office an additional day also.
The puppies continue to grow. We have nicknamed them Satan & Lucifer and at times they live up to their nicknames. We all went to obedience training and seem to be making some headway with that. They're still not sure that we are the ones in charge - it's a discussion we have frequently with them.
Take care,
Wendy
Things are still progressing here. Peter is driving now. He drives to work 2 days/week and to his therapy appointments. His "core" strength and his balance are both continuing to improve. He feels pretty good most of the time, but must remember to rest when tired.
We go to Duke on the 11th and hopefully they will reduce some more of his meds. He's hoping to be allowed to go to the office an additional day also.
The puppies continue to grow. We have nicknamed them Satan & Lucifer and at times they live up to their nicknames. We all went to obedience training and seem to be making some headway with that. They're still not sure that we are the ones in charge - it's a discussion we have frequently with them.
Take care,
Wendy
Monday, July 28, 2008
Slow but sure
Greetings!
Things are fairly boring here - we go from chiropractor, to PT, to MD and home. We are averaging 1.5 appts./day - those .5s are the hardest! Peter started physical therapy last week. He goes 3days/week for 1 1/2 hours. He says he feels much stronger and that even though I am a PT, he is more likely to exercise for someone else. Thanks goodness for insurance!
His back is on the mend - very slowly, and medically he is doing very well. He has been going in to work for 2 6 hour days a week and feels very good about that, and he continues to work from home.
The puppies, now know as Satan and Lucifer rather than Whoopi and Lucy, are growing like crazy. We thought Whoopi was the runt but the vet thinks she is normal size and that Lucy is going to be large. They (we)started Obedience training on Sat. It is going to be a challenge, but we will win!
Movie report - haven't done this in a while, but if you are my age, or like Abba, go see "Mama Mia". It is hilarious! Who knew Meryl Streep could sing? Pierce Brosnin can't but what he lacks in singing ability he makes up for in looks!
It is hot and muggy here every day now. Some one keeps getting afternoon showers but it is not us! There has been alot of activity on the golf course behind us and it is now 60% grass. It is really starting to look good.
That's all for now!
Wendy
Things are fairly boring here - we go from chiropractor, to PT, to MD and home. We are averaging 1.5 appts./day - those .5s are the hardest! Peter started physical therapy last week. He goes 3days/week for 1 1/2 hours. He says he feels much stronger and that even though I am a PT, he is more likely to exercise for someone else. Thanks goodness for insurance!
His back is on the mend - very slowly, and medically he is doing very well. He has been going in to work for 2 6 hour days a week and feels very good about that, and he continues to work from home.
The puppies, now know as Satan and Lucifer rather than Whoopi and Lucy, are growing like crazy. We thought Whoopi was the runt but the vet thinks she is normal size and that Lucy is going to be large. They (we)started Obedience training on Sat. It is going to be a challenge, but we will win!
Movie report - haven't done this in a while, but if you are my age, or like Abba, go see "Mama Mia". It is hilarious! Who knew Meryl Streep could sing? Pierce Brosnin can't but what he lacks in singing ability he makes up for in looks!
It is hot and muggy here every day now. Some one keeps getting afternoon showers but it is not us! There has been alot of activity on the golf course behind us and it is now 60% grass. It is really starting to look good.
That's all for now!
Wendy
Friday, July 11, 2008
Update
After a subtle reminder from John, and a not so sublte reminder from Fred, I am finally updating the blog. Sorry I took so long, we are fairly boring right now, so I don't always update.
Peter had an appointment at Duke yesterday and it went fairly well. Dr. H. feels that the reason he is still so weak may be due to one of the meds he is on - it may be prohibiting him from absorbing nutrients and preventing much new muscle formation. The decision was made to discontinue this medicine and see what happens. He says this is not a usual side-affect but that Peter's system may be more sensitive to it than most. He also cut back on a few other meds and ordered a physical therapy evaluation with treatment. Even though I am a P. T., my expertise has not been helpful because I am also the wife/caregiver/chief nagger and nobody listens to me.
Besides the generalized weakness, the other problem Peter has is continued swelling in his legs from the knee down. Since changing his meds yesterday he has gotten rid of alot of fluid, so maybe this will start to go away. He also needs to get more active, as do I.
My training for the half-marathon in Nov. is going slowly but fundraising is going well. You can donate online by going to http://pages.teamintraining.org/nce/Oaks08/wyandowmhc. Any and all donations are greatly appreciated.
The puppies are still great! They have about tripled in size since we got them. They can go up and down stairs now and chase each other all through the house. They are both very friendly girls and love to see other people and play with other dogs.
Not much else is going on here. I drive Peter to work one afternoon a week, to the chiropractor, and to run errands - really a very boring life at the moment.
Thanks for still being interested and caring about us!
Wendy
Peter had an appointment at Duke yesterday and it went fairly well. Dr. H. feels that the reason he is still so weak may be due to one of the meds he is on - it may be prohibiting him from absorbing nutrients and preventing much new muscle formation. The decision was made to discontinue this medicine and see what happens. He says this is not a usual side-affect but that Peter's system may be more sensitive to it than most. He also cut back on a few other meds and ordered a physical therapy evaluation with treatment. Even though I am a P. T., my expertise has not been helpful because I am also the wife/caregiver/chief nagger and nobody listens to me.
Besides the generalized weakness, the other problem Peter has is continued swelling in his legs from the knee down. Since changing his meds yesterday he has gotten rid of alot of fluid, so maybe this will start to go away. He also needs to get more active, as do I.
My training for the half-marathon in Nov. is going slowly but fundraising is going well. You can donate online by going to http://pages.teamintraining.org/nce/Oaks08/wyandowmhc. Any and all donations are greatly appreciated.
The puppies are still great! They have about tripled in size since we got them. They can go up and down stairs now and chase each other all through the house. They are both very friendly girls and love to see other people and play with other dogs.
Not much else is going on here. I drive Peter to work one afternoon a week, to the chiropractor, and to run errands - really a very boring life at the moment.
Thanks for still being interested and caring about us!
Wendy
Monday, June 23, 2008
It's a girl!
We got great news today, Kim had an ultrasound and they said it is 98% sure that the baby is a girl! Now I can start shopping!
All goes well here with the puppies. Whoopie is training much easier than "lazy Lucy". They continue to keep us entertained.
Peter seems to have taken a few steps backward. He fell Sat. night in the bathroom and has re-injured his back. As a result he does nothing. Luckily he goes to the chiropractor tomorrow and hopefully he can fix him up quick.
Wendy
All goes well here with the puppies. Whoopie is training much easier than "lazy Lucy". They continue to keep us entertained.
Peter seems to have taken a few steps backward. He fell Sat. night in the bathroom and has re-injured his back. As a result he does nothing. Luckily he goes to the chiropractor tomorrow and hopefully he can fix him up quick.
Wendy
Saturday, June 21, 2008
Getting better everyday!
I guess you have figured out that if I don't blog everything is going ok, and that is true. I will try to do better. I have heard from many people that they look forward to and even miss my blog and I have heard from others that they have stopped checking it because I never update - hopefully I can please everyone (or most) now.
Peter continues to get better everyday. Our next clinic appt. is not until July 10th and we are hoping they will discontinue some of his meds then. His legs still swell daily from the knees down so he wears the elastic stockings everyday. He may have to have some testing done next time we are in Durham to see if they can figure out why this has persisted for so long. His strength is improving though not as fast as we would like. He tripped in the driveway last week and went down face first. We went to the ER and thankfully nothing was broken - his head is too hard to break! He did end up with 2 black eyes, a purple/red nose, a goose egg above one eye and bruising in spots down to his chin. He is not a pretty picture. The chiropractor has been using electrical pulses to help the bruising go away and it seems to be helping.
Peter continues to work from home except for Monday afternoons when I drop him off for staff meetings and stuff. All seems to be going well with that. Maybe he can return to the office full time this fall.
Next weekend we are taking the puppies and driving to Altanta to visit my mother. Peter's family should be here to visit some time in July or August.
The puppies continue to grow and keep us busy. I think they have doubled in size since we got them. Whoopie is doing better in the house training dept. has trouble calming herself down. Lucy is very laid back so we refer to them as "Lazy Lucy" and "Wound Up Whoopie". They play well together and are just learning what their voices sound like. They are 9 weeks old today!
I have started training with the Leukemia Society's Team in Training program. I plan to walk the "City of the Oaks Marathon/Half-Marathon" in Raleigh, NC on November 2. I will be fundraising for the Society and would love your support. You can go to my fundraising website and donate online - it is quick and easy. The address is:
http://pages.teamintraining.org/nce/Oaks08/wyandowmhc
Thanks in advance for your support! The LLS benefits financially and I get a morale boost and incentive to keep on training.
Wendy
Peter continues to get better everyday. Our next clinic appt. is not until July 10th and we are hoping they will discontinue some of his meds then. His legs still swell daily from the knees down so he wears the elastic stockings everyday. He may have to have some testing done next time we are in Durham to see if they can figure out why this has persisted for so long. His strength is improving though not as fast as we would like. He tripped in the driveway last week and went down face first. We went to the ER and thankfully nothing was broken - his head is too hard to break! He did end up with 2 black eyes, a purple/red nose, a goose egg above one eye and bruising in spots down to his chin. He is not a pretty picture. The chiropractor has been using electrical pulses to help the bruising go away and it seems to be helping.
Peter continues to work from home except for Monday afternoons when I drop him off for staff meetings and stuff. All seems to be going well with that. Maybe he can return to the office full time this fall.
Next weekend we are taking the puppies and driving to Altanta to visit my mother. Peter's family should be here to visit some time in July or August.
The puppies continue to grow and keep us busy. I think they have doubled in size since we got them. Whoopie is doing better in the house training dept. has trouble calming herself down. Lucy is very laid back so we refer to them as "Lazy Lucy" and "Wound Up Whoopie". They play well together and are just learning what their voices sound like. They are 9 weeks old today!
I have started training with the Leukemia Society's Team in Training program. I plan to walk the "City of the Oaks Marathon/Half-Marathon" in Raleigh, NC on November 2. I will be fundraising for the Society and would love your support. You can go to my fundraising website and donate online - it is quick and easy. The address is:
http://pages.teamintraining.org/nce/Oaks08/wyandowmhc
Thanks in advance for your support! The LLS benefits financially and I get a morale boost and incentive to keep on training.
Wendy
Tuesday, June 3, 2008
Aren't we cute?
Here are Lucy, Peter and Whoopie, can you tell who's who? The girls play really well together and keep each other occupied quite a bit of the time. Housebreaking is a challenge with 2 puppies - I forgot that puppies are basically eating - biting - pooping machines!As you can see, Peter is looking pretty good. His hair is still thin and has a bit of a curl to it. Somedays it is wild and he looks like Albert Einstein - of course riding in the Miata with the top down doesn't help much either.
We try and get out somewhere every day and we are spending alot more time outside since the pupppies came.
Monday, June 2, 2008
Whoopie and Lucy are here
We have new puppies! Saturday night we got 2 6 week old cocker spaniel puppies, one black and one red. We have named them Whoopie (after Whoopie Goldberg) and Lucy (after Lucille Ball), can you figure out which is which? They are as cute as can be and we are enjoying having dog(s) in the house. As soon as I get some good pics I will post them.
Peter continues to improve! His strength is better every day, and his appetite is great! He eats just about everything in sight. We see the dr. on Thursday and are hoping that he has gained weight. His prednisone has leveled off and hopefully they will start decreasing some of the other drugs he is on. Strength continues to increase, but he is still quite weak. Now that Whoopie and Lucy are running around the house he is getting more exercise.
Everything is looking so much better than a month ago! We need to judge progress on a weekly basis or even a monthly basis, otherwise it is hard to see changes. As long as we can see progress, no matter how small, we are both encouraged and know that things will continue to improve.
Have a great day!
Wendy
Peter continues to improve! His strength is better every day, and his appetite is great! He eats just about everything in sight. We see the dr. on Thursday and are hoping that he has gained weight. His prednisone has leveled off and hopefully they will start decreasing some of the other drugs he is on. Strength continues to increase, but he is still quite weak. Now that Whoopie and Lucy are running around the house he is getting more exercise.
Everything is looking so much better than a month ago! We need to judge progress on a weekly basis or even a monthly basis, otherwise it is hard to see changes. As long as we can see progress, no matter how small, we are both encouraged and know that things will continue to improve.
Have a great day!
Wendy
Friday, May 23, 2008
Good news and more good news
All continues to improve. At the dr. this past Wed. Peter had gained 8 pounds. His numbers continue to improve and some are even normal. His appetite is great - thank goodness and he eats just about everything now. His strength is improving but he still has a ways to go. He does go up and down stairs on his own now and rarely needs assistance with any activities.
Peter continues to work full time. I drove him to the office last Monday for a 1 hour staff meeting that ended up being almost 3 hours. All went well but boy was he tired after that.
We spent last weekend at High Rock lake at Arlene and Roy's new house - wow! Our senior gang members were there and we had a great time relaxing together, playing cards, eating (of course) and even going for a boat ride on the lake.
I signed up to walk a half marathon in Nov. It will be through the Leukemia Society's Team in Training program and I will be seeking donations/sponsorships. I'll put a link in to my website later on.
Last but not least of the good news - Kim & Todd are expecting!!!! We will have a grandbaby in December. Needless to say, we are all very excited about this!
Thanks for your continued support.
Wendy
Peter continues to work full time. I drove him to the office last Monday for a 1 hour staff meeting that ended up being almost 3 hours. All went well but boy was he tired after that.
We spent last weekend at High Rock lake at Arlene and Roy's new house - wow! Our senior gang members were there and we had a great time relaxing together, playing cards, eating (of course) and even going for a boat ride on the lake.
I signed up to walk a half marathon in Nov. It will be through the Leukemia Society's Team in Training program and I will be seeking donations/sponsorships. I'll put a link in to my website later on.
Last but not least of the good news - Kim & Todd are expecting!!!! We will have a grandbaby in December. Needless to say, we are all very excited about this!
Thanks for your continued support.
Wendy
Thursday, May 8, 2008
Given some freedom!
Eveerything continues to improve! We saw Dr. Horwitz yesterday at the clinic and overall he is very pleased with Peter's progress. His counts are up and headed to where they should be. Unfortunately his blood sugar numbers are up and that may be why he continues to lose some weight. Started checking numbers more carefully today and adjusting insulin as needed. Hopefully that combined with his improved eating and the additions of weights to his exercise program will start putting some weight on him.
They pulled his Hickman out - yes, they actually grab it and pull it out of his chest - yesterday, so now we only go to Duke every other week. And, we don't need to see the dr. here in Wilmington for bloodwork, so that leave alot more time for Peter to work.
We are both a bit befuddled now. Technically we have lived here since Dec. of'06 but between hospitalizations and 10 days in Italy last June, it's really only been about 6 months. We packed and unpacked and reorganized a zillion times and as a result can find almost nothing! I think we need to start a list of what we are looking for and maybe a list of what we have found. Someday we will get it all straight - not anytime soon but someday!
Wendy
They pulled his Hickman out - yes, they actually grab it and pull it out of his chest - yesterday, so now we only go to Duke every other week. And, we don't need to see the dr. here in Wilmington for bloodwork, so that leave alot more time for Peter to work.
We are both a bit befuddled now. Technically we have lived here since Dec. of'06 but between hospitalizations and 10 days in Italy last June, it's really only been about 6 months. We packed and unpacked and reorganized a zillion times and as a result can find almost nothing! I think we need to start a list of what we are looking for and maybe a list of what we have found. Someday we will get it all straight - not anytime soon but someday!
Wendy
Sunday, May 4, 2008
Still Improving
Things are moving ahead, slowly but surely - actually a lot slower than we would like, but it is all going in the right direction.
Peter continues to work from home and that helps keep his mind occupied. He has been doing alot of reading both for work and for pleasure.
Dr. Horwitz at Duke is very pleased with his progress. Some of his meds are still being adjusted so we continue to see changes. There should be some big improvements in his strength in the next week or so because the prednisone dose should reach a level that will allow him to start rebuilding muscle rather than maintaining the status quo. Hopefully we will be able to add weights to his exercise regimen soon.
Peter did not lose any weight this past week which is good. The swelling he has had in his legs in now only in his feet, actually mostly his toes. So not losing weight actually meant he gained some weight because he lost water weight. His eating is getting better, but he continues to need "Boost" supplements daily. I think as his strength comes back his appetite and his ability to eat will improve also.
These past few weeks that we have been home have been hard on both of us. We both frustrate easily; Peter for what he is unable to do, and me because I have to watch what he is unable to do and wait for him to ask for help. He is working hard and we are both trying hard not to take out our frustrations on each other. We have both been to see a counselor individually and will meet with him together this week. I think it is helping, but will sure be glad when we look back on this as a "remember when" and not as the present!
We go to Duke again Wed. and then maybe after that it will be every other week. It sure will be nice not to spend so much time in Durham - we are definitely vacationing somewhere else next year.
Take care,
Wendy
Peter continues to work from home and that helps keep his mind occupied. He has been doing alot of reading both for work and for pleasure.
Dr. Horwitz at Duke is very pleased with his progress. Some of his meds are still being adjusted so we continue to see changes. There should be some big improvements in his strength in the next week or so because the prednisone dose should reach a level that will allow him to start rebuilding muscle rather than maintaining the status quo. Hopefully we will be able to add weights to his exercise regimen soon.
Peter did not lose any weight this past week which is good. The swelling he has had in his legs in now only in his feet, actually mostly his toes. So not losing weight actually meant he gained some weight because he lost water weight. His eating is getting better, but he continues to need "Boost" supplements daily. I think as his strength comes back his appetite and his ability to eat will improve also.
These past few weeks that we have been home have been hard on both of us. We both frustrate easily; Peter for what he is unable to do, and me because I have to watch what he is unable to do and wait for him to ask for help. He is working hard and we are both trying hard not to take out our frustrations on each other. We have both been to see a counselor individually and will meet with him together this week. I think it is helping, but will sure be glad when we look back on this as a "remember when" and not as the present!
We go to Duke again Wed. and then maybe after that it will be every other week. It sure will be nice not to spend so much time in Durham - we are definitely vacationing somewhere else next year.
Take care,
Wendy
Tuesday, April 22, 2008
Home Again
Yeah, I know, it's been awhile. We've been home since the 15th and I just haven't gotten around to writing anything on the blog. I'll try and update now.
All is going fairly well. We are still surprised at how weak Peter is. He is getting stronger but it is a slow process. He can get in and out of the car on his own and only needs supervision on the stairs. I have added some resistance to his arm exercises and increased the reps on his legs. We walk out to the mailbox at least once a day and between bloodwork and dr. appts. we are out and about almost everyday. The biggest problem we have as far as movement goes is adding enough time to our daily schedule to get all the stuff done that we want.
Eating continues to be a problem but is slowly improving. We have decided that if Peter decides that a certain food seems appealing we will try it and see what happens. If no bad reaction, then we will continue on - the heck with the dietary guidelines - we'll try things in moderation.
Peter is working from home. He tries to get in 6-8 hours/day with some on weekends to get to his 40 hours. Alot of what he is doing now is catching up on procedures, and attending phone meetings. It helps him alot to keep his mind occupied.
The last time he was in the hospital at Duke a lady came to the unit and played the hammered dulcimer. Peter talked to her about playing it and she said that if we didn't have it out where it could be played with at any time we woud never use it, so, it is now on a small table in the living room. We'll see what happens.
We will be in Durham tomorrow, the 23rd for an appointment at the clinic. The plan at the moment is to return home tomorrow night, but that is all subject to change.
Take care,
Wendy
All is going fairly well. We are still surprised at how weak Peter is. He is getting stronger but it is a slow process. He can get in and out of the car on his own and only needs supervision on the stairs. I have added some resistance to his arm exercises and increased the reps on his legs. We walk out to the mailbox at least once a day and between bloodwork and dr. appts. we are out and about almost everyday. The biggest problem we have as far as movement goes is adding enough time to our daily schedule to get all the stuff done that we want.
Eating continues to be a problem but is slowly improving. We have decided that if Peter decides that a certain food seems appealing we will try it and see what happens. If no bad reaction, then we will continue on - the heck with the dietary guidelines - we'll try things in moderation.
Peter is working from home. He tries to get in 6-8 hours/day with some on weekends to get to his 40 hours. Alot of what he is doing now is catching up on procedures, and attending phone meetings. It helps him alot to keep his mind occupied.
The last time he was in the hospital at Duke a lady came to the unit and played the hammered dulcimer. Peter talked to her about playing it and she said that if we didn't have it out where it could be played with at any time we woud never use it, so, it is now on a small table in the living room. We'll see what happens.
We will be in Durham tomorrow, the 23rd for an appointment at the clinic. The plan at the moment is to return home tomorrow night, but that is all subject to change.
Take care,
Wendy
Wednesday, April 9, 2008
Goodbye ABMT Unit
Peter was discharged from the hospital yesterday and has moved in with me at Homewood Suites. His laptop and new printer are set up and he is anxious to start working from "home" again. He got a call from one of his co-workers Joe, who said that the flu is rampant again at GE so it is a good thing he will not be going into the site when we get back to Wilmington.
Peter is alot weaker than we had realized. He has a very hard time gettting up from low seats, ie. sofa, toilet, chairs with no arms, so he needs to pay attention to where he sits and what is available to use to help him up. We also found out this morning that his balance is not as good as it used to be and that he has trouble with curbs. I let him out at the clinic this morning and after I pulled away he lost his balance and tripped on the curbing. Luckily he was able to get his hands out in front of himself and only scrape his nose. Leave it to him to have to make a grand entrance, and of course I missed it all because I was pulling into the parking garage - guess I won't let him go anywhere alone for awhile.
We hope to be back in Wilmington by the end of next week. If all continues well, the drs. say we should be.
Wendy
Peter is alot weaker than we had realized. He has a very hard time gettting up from low seats, ie. sofa, toilet, chairs with no arms, so he needs to pay attention to where he sits and what is available to use to help him up. We also found out this morning that his balance is not as good as it used to be and that he has trouble with curbs. I let him out at the clinic this morning and after I pulled away he lost his balance and tripped on the curbing. Luckily he was able to get his hands out in front of himself and only scrape his nose. Leave it to him to have to make a grand entrance, and of course I missed it all because I was pulling into the parking garage - guess I won't let him go anywhere alone for awhile.
We hope to be back in Wilmington by the end of next week. If all continues well, the drs. say we should be.
Wendy
Saturday, April 5, 2008
No hook-ups today
Lori and I came in to visit Peter today and he had nothing hooked up to his port - no meds, no saline, no TPN, nothing - a very good sign. He is taking all his meds by mouth as of today and only gets his TPN at night. The doctor's would like his to decrease his fluid intake a bit and try to eat more solid foods so that his protein levels can continue to move up. His liver function tests are all back to normal. He is eating small amounts of soft solid foods and trying to increase caloric intake with boost, ensure and instant breakfast.
He is still having problems with fluid retention which is related to low blood protein. He wears his arms and legs mostly at night. He's still having trouble with his thigh highs, gonna try some biker shorts type pants today and see if that helps to keep them up.
As is stands now, we are gonna see if discharge is possible Tuesday afternoon - that way I can get back to Wilmington again, do laundry and take Lori to the airport. Then Wed. would be our first day at clinic and Dr. Horwitz thinks that maybe we could return to Wilmington sometime the next week.
Peter has checked with Dr. Horwitz, HR, and his boss at GE and the plan as it stands now (I think) is for him to begin work from home 4/14. He will have very limited physical contact with the office - maybe a trip in on the weekend for a short time, and I would go with him to be sure it is a short time!
Lori and I have had a nice visit. We've done some shopping and lots of eating out. We went to Duke Chapel yesterday and plan to go back today to listen to a program on quilting! Tomorrow we would like to go to the Flea Market and then meet Heather for brunch. Also would like to get to Duke Gardens. Of course, it has rained just about everyday since Lori has been here and that tends to put a damper on outdoor activities!
Not much else is new. Have a great day!
Wendy
He is still having problems with fluid retention which is related to low blood protein. He wears his arms and legs mostly at night. He's still having trouble with his thigh highs, gonna try some biker shorts type pants today and see if that helps to keep them up.
As is stands now, we are gonna see if discharge is possible Tuesday afternoon - that way I can get back to Wilmington again, do laundry and take Lori to the airport. Then Wed. would be our first day at clinic and Dr. Horwitz thinks that maybe we could return to Wilmington sometime the next week.
Peter has checked with Dr. Horwitz, HR, and his boss at GE and the plan as it stands now (I think) is for him to begin work from home 4/14. He will have very limited physical contact with the office - maybe a trip in on the weekend for a short time, and I would go with him to be sure it is a short time!
Lori and I have had a nice visit. We've done some shopping and lots of eating out. We went to Duke Chapel yesterday and plan to go back today to listen to a program on quilting! Tomorrow we would like to go to the Flea Market and then meet Heather for brunch. Also would like to get to Duke Gardens. Of course, it has rained just about everyday since Lori has been here and that tends to put a damper on outdoor activities!
Not much else is new. Have a great day!
Wendy
Sunday, March 30, 2008
Slow but sure
Things are moving along, but very slowly. The attending today said maybe Peter could be discharged to the clinic this week, and that we should realistically plan to be in Durham for 3-6 weeks after that followed up by weekly visits back to Durham. They continue to introduce new foods very slowly - can add potatoes (no skins), rice krispies and grits (oh boy) this week.
Peter is now wearing thigh high elastic stockings and full length arm stockings to help with the swelling he has been experiencing. The occupational therapist said he is to wear the legs until the swelling goes down and stays down and to wear the arms for about 3 months. The arms are held on by "cross your heart straps" so Peter feels as if he is wearing a bra. The legs tend to slip down so I have threatened to get him a garter belt. Maybe I'll bring him a feather boa to go with all his undergarments!
He seems to be in good spirits - eager to get out of the hospital, but willing to take all the time needed and go slowly so there is no relapse.
I am still having a hard time dealing with Annie's dying. I will be going to Wilmington tomorrow and am not looking forward to the quiet - no tapping of little paws. I will be giving what I can to the local shelter, throwing away some stuff, and saving some of Annie's "babies". We plan to plant a pink dogwood tree in her memory. We will make the hole a bit larger than needed so we can put Annie's ashes and her "babies" in with the tree. With the drought I will have to make sure to water this special tree daily.
Not much else is going on here. It's cold and rainy - what happened to the nice sunny and 80 degrees from Friday? I am ready for spring!!!
Wendy
Peter is now wearing thigh high elastic stockings and full length arm stockings to help with the swelling he has been experiencing. The occupational therapist said he is to wear the legs until the swelling goes down and stays down and to wear the arms for about 3 months. The arms are held on by "cross your heart straps" so Peter feels as if he is wearing a bra. The legs tend to slip down so I have threatened to get him a garter belt. Maybe I'll bring him a feather boa to go with all his undergarments!
He seems to be in good spirits - eager to get out of the hospital, but willing to take all the time needed and go slowly so there is no relapse.
I am still having a hard time dealing with Annie's dying. I will be going to Wilmington tomorrow and am not looking forward to the quiet - no tapping of little paws. I will be giving what I can to the local shelter, throwing away some stuff, and saving some of Annie's "babies". We plan to plant a pink dogwood tree in her memory. We will make the hole a bit larger than needed so we can put Annie's ashes and her "babies" in with the tree. With the drought I will have to make sure to water this special tree daily.
Not much else is going on here. It's cold and rainy - what happened to the nice sunny and 80 degrees from Friday? I am ready for spring!!!
Wendy
Friday, March 28, 2008
Bananas yeah!
Things are definitely looking up. The doctor's said we could add bananas to Peter's diet today and he is really looking forward to it. Still on TPN and cutting it down slowly. Still hoping for discharge from hospital sometime next week. Then clinic.
Peter hopes to begin working from home next month. Since we have internet access at the hotel he will be able to work from there. He is looking forward to the activity, a chance to be doing something different for a change.
My cousin Lori is coming to visit next week. I will pick her up in Wilmington on Monday and we will drive to Durham on Tuesday. We'll goof off and have a good time.
Take care,
Wendy
PS Peter has his own email address at charter. It's p.yandow@charter.net He'd love to hear from all of you.
Peter hopes to begin working from home next month. Since we have internet access at the hotel he will be able to work from there. He is looking forward to the activity, a chance to be doing something different for a change.
My cousin Lori is coming to visit next week. I will pick her up in Wilmington on Monday and we will drive to Durham on Tuesday. We'll goof off and have a good time.
Take care,
Wendy
PS Peter has his own email address at charter. It's p.yandow@charter.net He'd love to hear from all of you.
Tuesday, March 25, 2008
Good news and bad
Peter continues to do well. He's been eating oatmeal, broth and popsicles with no problems. Maybe tomorrow or Thursday they will add more food to his list. Since they are moving very slowly this time, he will probably be in the hospital until next week. Then we go to the clinic for out-patient treatment. We have no idea how long we will be at the clinic or when we will get home, sooner rather than later, I hope.
We had to put Annie down today. Heather called around 2 and said the petsitter had called and said Annie was ill and unable to get up. I met Heather and Annie at the vets. She just barely was able to stand and was in bad shape. They did bloodwork, xrays and an ultrasound. They found tumors in her liver - actually more tumors than liver. She also had fluid(some of it bloody) in her abdomen and some fluid in her lungs. All in all she was in bad shape. The vet felt that she was starting to be in pain and that due to her age (2 weeks shy of 11) the best choice would be to put her to sleep. She said we could have an oncologist see her and maybe try surgery to remove the tumors, but felt that was not a good option. Heather and I stayed with her until the end. She seemed to go peacefully and is no longer in pain. I have been crying on and off since 2pm. Peter and I are sure going to miss our little "squirrley" girl.
Wendy
We had to put Annie down today. Heather called around 2 and said the petsitter had called and said Annie was ill and unable to get up. I met Heather and Annie at the vets. She just barely was able to stand and was in bad shape. They did bloodwork, xrays and an ultrasound. They found tumors in her liver - actually more tumors than liver. She also had fluid(some of it bloody) in her abdomen and some fluid in her lungs. All in all she was in bad shape. The vet felt that she was starting to be in pain and that due to her age (2 weeks shy of 11) the best choice would be to put her to sleep. She said we could have an oncologist see her and maybe try surgery to remove the tumors, but felt that was not a good option. Heather and I stayed with her until the end. She seemed to go peacefully and is no longer in pain. I have been crying on and off since 2pm. Peter and I are sure going to miss our little "squirrley" girl.
Wendy
Friday, March 21, 2008
Clear liquids
Well, he's progressed to jello and broth and so far all is well. The drs. have decided to add another immunosuppressant to help the gut heal faster. Maybe by Sunday or Monday he can start soft solids again. The runs are way down today so that is a good sign. He seems to feel better and is very optimistic.
Peter has been learning progressive relaxation techniques and they seem to be helping. He seems to feel better able to handle the situation he finds himself in.
Yesterday as I was leaving the transplant unit there was a patient be wheeled in who looked familiar. It turned out that it was one of the ladies we had met at the clinic. She is also from Wilmington and we had seen her at the oncologist's office last month. She was admitted yesterday with the same problems that Peter has been having. She has been unable to eat in 3 weeks, has had diarhea and lost alot of weight. She was in the hospital in Wilmington but they were unable to do anything for her. Initial diagnosis: GVHD of the gut. The silver lining to this is that she is feeling like Peter did when he was admitted and he is able to talk with her and help her. It reminds him of how far he has come and that helps alot with bolstering his spirits.
Kim & Todd will get to Raleigh tonight and then we will see them tomorrow. Not sure what our plans are.
Happy Easter to all.
Wendy
Peter has been learning progressive relaxation techniques and they seem to be helping. He seems to feel better able to handle the situation he finds himself in.
Yesterday as I was leaving the transplant unit there was a patient be wheeled in who looked familiar. It turned out that it was one of the ladies we had met at the clinic. She is also from Wilmington and we had seen her at the oncologist's office last month. She was admitted yesterday with the same problems that Peter has been having. She has been unable to eat in 3 weeks, has had diarhea and lost alot of weight. She was in the hospital in Wilmington but they were unable to do anything for her. Initial diagnosis: GVHD of the gut. The silver lining to this is that she is feeling like Peter did when he was admitted and he is able to talk with her and help her. It reminds him of how far he has come and that helps alot with bolstering his spirits.
Kim & Todd will get to Raleigh tonight and then we will see them tomorrow. Not sure what our plans are.
Happy Easter to all.
Wendy
Tuesday, March 18, 2008
Ice chips again
Took a small step backward today - back to ice chips only. Peter's gut is not healed enough yet to tolerate even semi-solid food, so it's TPN and ice chips again. No idea now when Peter will be out of the hospital or when we will return to Wilmington, don't think the drs have any idea either.
I am in Wilmington tonight - needed to get stuff we needed and get stuff done around the house. I need to stop bringing more stuff back with me or otherwise we will end up riding home like the Clampetts again (for those of you not old enough, they were hillbillies who moved to Beverly Hills with stuff hanging off the truck.
Homewood Suites is nice. They have a breakfast buffet every day and dinner 4 nights/week. At least then I eat 2 meals/day. I have a balcony and I can look out over I-40 and watch all the traffic go by!
Not much else is going on here.
Wendy
I am in Wilmington tonight - needed to get stuff we needed and get stuff done around the house. I need to stop bringing more stuff back with me or otherwise we will end up riding home like the Clampetts again (for those of you not old enough, they were hillbillies who moved to Beverly Hills with stuff hanging off the truck.
Homewood Suites is nice. They have a breakfast buffet every day and dinner 4 nights/week. At least then I eat 2 meals/day. I have a balcony and I can look out over I-40 and watch all the traffic go by!
Not much else is going on here.
Wendy
Monday, March 17, 2008
Slow but sure
Peter continues to make slow progress. At this point eating is trial and error - eat something and if you don't puke or poop uncontrollably, then you can eat it again. He had scrambled eggs and oatmeal this morning and the jury is still out on them. He took some anti-nausea medicine and has been in and out of sleep ever since, but all is still where it should be.
We are still hoping he will get out mid week, but no one mentioned it during rounds this morning. They are continuing to switch his meds from IV to oral and they are switching his TPN to nighttime only. Hopefully that will increase his appetite.
He has some sort of bug that is antibiotic resistant so he is on contact isolation. it is not something that healthy people can get, but could be a big problem for others on the unit. So, while anyone is in his room we must wear gloves and gowns,and when he leaves the room he wears gloves and gown. Luckily they have XL gloves, so I can be fairly comfortable, but they sure get hot and sweaty, and typing with rubber gloves on is not easy. Needless to say, I am not doing any stitching right now either - would probably sew whatever to the gloves!
Not much else is new here.
Wendy
We are still hoping he will get out mid week, but no one mentioned it during rounds this morning. They are continuing to switch his meds from IV to oral and they are switching his TPN to nighttime only. Hopefully that will increase his appetite.
He has some sort of bug that is antibiotic resistant so he is on contact isolation. it is not something that healthy people can get, but could be a big problem for others on the unit. So, while anyone is in his room we must wear gloves and gowns,and when he leaves the room he wears gloves and gown. Luckily they have XL gloves, so I can be fairly comfortable, but they sure get hot and sweaty, and typing with rubber gloves on is not easy. Needless to say, I am not doing any stitching right now either - would probably sew whatever to the gloves!
Not much else is new here.
Wendy
Friday, March 14, 2008
Progressing to soft foods
All continues to go well. Peter is now allowed soft foods. So far he has tolerated everything he has been given very well. Still has the diarhea but is much less. The doctors say he might be able to be discharged to the clinic the beginning of next week. First they need to get him off of IV meds and IV nutrition. He is up to 152 pounds - alot of that is fluids because he was very dehydrated. He looks much better - his face has filled in alot and his color is much better. He's up and walking and will be starting an exercise program soon!
Not much else is going on - same old same old.
Wendy
Not much else is going on - same old same old.
Wendy
Thursday, March 13, 2008
Jello - mmmmgood!
Peter's making progress - clear liquids, broth and Jello! He has to make himself eat it, but it is much better than ice chips. He continues to improve; looks good and feels good. I'm hopeful he will be discharged Friday or Saturday. We will probably be back to daily clinic visits to check all his levels and his nutrition input. His dr. was in yesterday and he admitted that Peter was in worse shape than he had anticipated - the GVHD came on with a vengence. Now he's on the right meds and going in the right direction!
I'm checking into Homewood Suites today. I've enjoyed staying with my gang buddies - thanks again!!! It's nice to have someone to talk to.
Have a great day!
Wendy
I'm checking into Homewood Suites today. I've enjoyed staying with my gang buddies - thanks again!!! It's nice to have someone to talk to.
Have a great day!
Wendy
Wednesday, March 12, 2008
Gaining weight and feeling better
Everything is looking up! Peter has gained about 10 lbs and is feeling much better. The drs. have finally gotten all the test results back and Peter only has GVHD of the colon - no infections of any kind, so the treatment they are giving him is the right one! He remains on TPN - IV nutrition and can only have ice chips. If they feel the colon is rested enough they may start him on clear liquids today and from what the nurses tell me he could be on that for awhile. They are going to monitor him really closely.
No word yet as to when he will be discharged from the hospital to the clinic. He can get the TPN at the clinic but not at home. I have been "sleeping around" staying with different friends for this past week and will check into Homewood Suites in Durham on Thursday.
Peter has met with the physical therapist and he has him on a program to use the treadmill, the bike and some free weights. He is very motivated to gain back some of the muscle mass he lost. He looks one hundred percent better than he did last week and knows he made the right decision to come back into the hospital.
Have a great day!
Wendy
No word yet as to when he will be discharged from the hospital to the clinic. He can get the TPN at the clinic but not at home. I have been "sleeping around" staying with different friends for this past week and will check into Homewood Suites in Durham on Thursday.
Peter has met with the physical therapist and he has him on a program to use the treadmill, the bike and some free weights. He is very motivated to gain back some of the muscle mass he lost. He looks one hundred percent better than he did last week and knows he made the right decision to come back into the hospital.
Have a great day!
Wendy
Saturday, March 8, 2008
Things are looking up!
Peter's been in the hospital since Wed. afternoon and looks and feels better. They finished most of the testing yesterday - still some bloodwork tests they are waiting on, but the general feeling is that it is GVHD (graft versus host disease). The CAT scan showed inflammation in the colon which was confirmed by the colonoscopy. There are lesions in the colon but don't know if they lesions caused the diarrhea or vice versa.
They installed a new Hickman catheter in his chest on Thursday and started the IV nutrition that night. He still is only allowed ice chips by mouth - no food to eat until the gut gets a chance to heal abit. The initial estimate was 5 days in the hospital, but that doesn't seem like it is realistic. I imagine it will be longer, and then a few weeks outpatient.
Peter's spirits are much better. He knows he is in the right place and is confident once again that all will be well, eventually - just not as fast as we had hoped. He has been talking with a counselor and that is helping also.
I forgot about "March Madness" here in NC and have been having a time trying to get a hotel room for 3 weeks straight. For now I am staying with friends and hope that by Thursday we will have a hotel room somewhere.
I'll keep this blog updated as best I can. I am bringing the laptop back to Durham with me today.
Wendy
They installed a new Hickman catheter in his chest on Thursday and started the IV nutrition that night. He still is only allowed ice chips by mouth - no food to eat until the gut gets a chance to heal abit. The initial estimate was 5 days in the hospital, but that doesn't seem like it is realistic. I imagine it will be longer, and then a few weeks outpatient.
Peter's spirits are much better. He knows he is in the right place and is confident once again that all will be well, eventually - just not as fast as we had hoped. He has been talking with a counselor and that is helping also.
I forgot about "March Madness" here in NC and have been having a time trying to get a hotel room for 3 weeks straight. For now I am staying with friends and hope that by Thursday we will have a hotel room somewhere.
I'll keep this blog updated as best I can. I am bringing the laptop back to Durham with me today.
Wendy
Thursday, March 6, 2008
Update
Peter was admitted back to 9200 at Duke yesterday. Hopefully it is only for 5-7 days so he can get some IV nutrition, his meds back in order and get some counseling. When he is discharged from the hospital we will be staying in Durham for 2-3 more weeks so that we can be sure that all is right and we don't need to do this again.
When I visited him last night his mental outlook was improved 100%! He feels that he is in the right place now and can get the help he needs. He will have another Hickman catheter put in today so he can get IV nutrition and they plan to do a CATscan of his chest, abdomen and pelvis to see if there is any other cause for his chronic diarrhea. When they weighed him yesterday he had lost 8 more pounds in 2 weeks so he is down almost 60 pounds since he was first hospitalized.
Due to the current flu outbreak Duke is pretty much on lockdown for patients. They are asking that only primary caregivers come, especially to units like 9200. I'll update the blog as often as I can. We both have our cellphones with us and I know Peter would appreciate phonecalls!
Keep us in your prayers,
Wendy
When I visited him last night his mental outlook was improved 100%! He feels that he is in the right place now and can get the help he needs. He will have another Hickman catheter put in today so he can get IV nutrition and they plan to do a CATscan of his chest, abdomen and pelvis to see if there is any other cause for his chronic diarrhea. When they weighed him yesterday he had lost 8 more pounds in 2 weeks so he is down almost 60 pounds since he was first hospitalized.
Due to the current flu outbreak Duke is pretty much on lockdown for patients. They are asking that only primary caregivers come, especially to units like 9200. I'll update the blog as often as I can. We both have our cellphones with us and I know Peter would appreciate phonecalls!
Keep us in your prayers,
Wendy
Tuesday, March 4, 2008
Bottomed out, I hope
Well, things have gone as they say "to hell in a handbasket". Peter continues to be unable to eat solid food and has to force himself to drink smoothies and Ensure.
Our friends Linda & Jim came by yesterday and Linda helped us to realize that things had gotten out of hand. Peter's inability to eat is probably the result of his body going into "starvation mode". This is not something he has any control over so he is going to need some counseling, both psychological and nutritional to get out of this hole. Linda made alot of suggestions of what we could do but Peter is very discouraged and feels like the best place for him is back at Duke. They can give him IV nutrtition, get his meds adjusted, and counseling so that once he begins to gain weight we can return home and follow-up with counseling here.
The plan at the moment is to call Duke tomorrow and request admission for IV nutrition. I think once they see him and talk to him they will agree.
Please keep up in your thoughts and prayers. This is the hardest time we have had so far and we need all the help we can get. I'm not sure yet where I will be staying but will update the blog as often as I can.
Wendy
Our friends Linda & Jim came by yesterday and Linda helped us to realize that things had gotten out of hand. Peter's inability to eat is probably the result of his body going into "starvation mode". This is not something he has any control over so he is going to need some counseling, both psychological and nutritional to get out of this hole. Linda made alot of suggestions of what we could do but Peter is very discouraged and feels like the best place for him is back at Duke. They can give him IV nutrtition, get his meds adjusted, and counseling so that once he begins to gain weight we can return home and follow-up with counseling here.
The plan at the moment is to call Duke tomorrow and request admission for IV nutrition. I think once they see him and talk to him they will agree.
Please keep up in your thoughts and prayers. This is the hardest time we have had so far and we need all the help we can get. I'm not sure yet where I will be staying but will update the blog as often as I can.
Wendy
Monday, February 25, 2008
Doing well
Greetings! Guess it has been awhile, will try to update all that has happened since my last post.
Once Peter got back on the prednisone everything started looking up. He could eat, although he really didn't want to, and he could keep the food down. We saw Dr. Horwitz on the 20th and he was quite distressed about this recent setback. Peter has lost between 10-15 pounds since he was discharged from the ABMT clinic the end of last month. Dr. H upped the prednisone and added another steroid that works specifically to coat the stomach and intestines. Since starting this new regimen Peter is much better. He actually got up this morning early because he was hungry!!!! He is still not eating alot but at least he is getting in 3 small meals per day, some snacks and all his meds.
Before we left the dr.s office I told him that we were not at all satisfied with the way this last episode was handled. He said he understood my concerns, and stressed that they are very hesistant to put patients back on steroids once they are off of them. I told him I felt that his lack of eating, weight loss and vomiting should have outweighed those concerns. Their statement that they wanted the test results back was a load of crap - they still had no results as of last Wed. Would they have let Peter stay the way he was withouth Prednisone until the results came back - maybe another 2-3 days? No response. I would hate to have seen the shape he would have been in if they had waited.
Now that he is eating and taking his meds, his spirits are greatly improved. We are starting back to walking for 1/2 hour periods and he is taking an interest in what needs to be done here and even starting to keep an eye on what is going on at work even though he won't be back there until mid-April at the earliest.
The golf course behind us is under construction - a huge remodel. Some days it is so noisy I could scream. The equipment makes the whole house shudder! Luckily they are working further away from us today but I am sure they will be back.
Until next time, have a great day!
Wendy
Once Peter got back on the prednisone everything started looking up. He could eat, although he really didn't want to, and he could keep the food down. We saw Dr. Horwitz on the 20th and he was quite distressed about this recent setback. Peter has lost between 10-15 pounds since he was discharged from the ABMT clinic the end of last month. Dr. H upped the prednisone and added another steroid that works specifically to coat the stomach and intestines. Since starting this new regimen Peter is much better. He actually got up this morning early because he was hungry!!!! He is still not eating alot but at least he is getting in 3 small meals per day, some snacks and all his meds.
Before we left the dr.s office I told him that we were not at all satisfied with the way this last episode was handled. He said he understood my concerns, and stressed that they are very hesistant to put patients back on steroids once they are off of them. I told him I felt that his lack of eating, weight loss and vomiting should have outweighed those concerns. Their statement that they wanted the test results back was a load of crap - they still had no results as of last Wed. Would they have let Peter stay the way he was withouth Prednisone until the results came back - maybe another 2-3 days? No response. I would hate to have seen the shape he would have been in if they had waited.
Now that he is eating and taking his meds, his spirits are greatly improved. We are starting back to walking for 1/2 hour periods and he is taking an interest in what needs to be done here and even starting to keep an eye on what is going on at work even though he won't be back there until mid-April at the earliest.
The golf course behind us is under construction - a huge remodel. Some days it is so noisy I could scream. The equipment makes the whole house shudder! Luckily they are working further away from us today but I am sure they will be back.
Until next time, have a great day!
Wendy
Sunday, February 17, 2008
Clarification & Update
First of all, let me clarify - Peter was not admitted back into Duke hospital - I'm sorry if I wasn't specific enough in my postings. He was recalled to the Adult Bone Marrow Transplant (ABMT) clinic which is the clinic we have been going to at Duke since he was discharged from the hospital.
Now that that is clear, I hope, we are back in Wilmington. We went to the clinic yesterday, they drew blood and said all looked good, so we could leave and come back again the next day (Sunday). They were not planning on making any changes in meds until after the biopsy results came back on Tues. or Wed. After thinking about it for a moment, I went and spoke to the nurse practicioner and reminded her that Peter had not kept food down for a week nor had he taken his meds since Wed. and didn't they want to do something about this? I reminded them that the problem started just 2-3 days after the prednisone was discontinued and asked if maybe he should be put back on it. She said she would talk to the dr. about it and let us know, so I said that I was thinking of putting him back on the prednisone anyway to see if that helped. That got her attention and she spoke to the attending physician who agreed to start back on the prednisone. Peter took it yesterday and today and he thinks he is feeling better! Hooray!
We go back to the ABMT clinic on Wed. Hopefully they will have test results back and will have a plan ready.
Wendy
Now that that is clear, I hope, we are back in Wilmington. We went to the clinic yesterday, they drew blood and said all looked good, so we could leave and come back again the next day (Sunday). They were not planning on making any changes in meds until after the biopsy results came back on Tues. or Wed. After thinking about it for a moment, I went and spoke to the nurse practicioner and reminded her that Peter had not kept food down for a week nor had he taken his meds since Wed. and didn't they want to do something about this? I reminded them that the problem started just 2-3 days after the prednisone was discontinued and asked if maybe he should be put back on it. She said she would talk to the dr. about it and let us know, so I said that I was thinking of putting him back on the prednisone anyway to see if that helped. That got her attention and she spoke to the attending physician who agreed to start back on the prednisone. Peter took it yesterday and today and he thinks he is feeling better! Hooray!
We go back to the ABMT clinic on Wed. Hopefully they will have test results back and will have a plan ready.
Wendy
Friday, February 15, 2008
Quick update
Just a quick note - colonoscopy looked fine. They took some biopsies just to see if there was anything on a microscopic level. Gave him a GVHD diet to follow which is very similiar to what I should be following for my diverticulitis - they are going to get us both healthy one way or another! He's gonna try eating today and see what happens. We go back to the clinic again tomorrow and then see what happens from there.
Wendy
Wendy
Thursday, February 14, 2008
A small step backward
Well, we are back in Durham at the ABMT clinic. We came back yesterday morning hoping to only stay for a day or two but now it looks like we will be here for a week or so.
Peter started having troubles Sunday afternoon, nausea and vomiting with anything he ate. This continued and we called the clinic Tuesday afternoon. They scheduled us for an appt. here at the clinic. The current thinking is that he has graft versus host disease (GVHD)of the stomach/intestinal tract. This problem started 2-3 days after his last dose of prednisone, so the prednisone was probably just keeping the GVHD under control. He has been getting some IV meds plus fluids today and we have a skin biopsy later to look for GVHD of the skin. He has a colonoscopy tomorrow with biopsies planned. They plan to run some further tests next week so that they are sure of what he has and how they want to treat it. Hopefully they will just have to put him back on steroids.
We stayed at the Millenium Hotel last night and will be there again tonight. Then we move to Homewood Suites (not Homestead where we stayed before). We already had an appt. set for next Wed. so hopefully when we see Dr. Horwitz then he can send us back home.
Again we are indebted to Heather. We dropped Annie off at her house yesterday and she settled in quite nicely. She'll stay there until we head back to Wilmington.
We are confident that this is just a small step backward, and look forward to returning home.
Wendy
Peter started having troubles Sunday afternoon, nausea and vomiting with anything he ate. This continued and we called the clinic Tuesday afternoon. They scheduled us for an appt. here at the clinic. The current thinking is that he has graft versus host disease (GVHD)of the stomach/intestinal tract. This problem started 2-3 days after his last dose of prednisone, so the prednisone was probably just keeping the GVHD under control. He has been getting some IV meds plus fluids today and we have a skin biopsy later to look for GVHD of the skin. He has a colonoscopy tomorrow with biopsies planned. They plan to run some further tests next week so that they are sure of what he has and how they want to treat it. Hopefully they will just have to put him back on steroids.
We stayed at the Millenium Hotel last night and will be there again tonight. Then we move to Homewood Suites (not Homestead where we stayed before). We already had an appt. set for next Wed. so hopefully when we see Dr. Horwitz then he can send us back home.
Again we are indebted to Heather. We dropped Annie off at her house yesterday and she settled in quite nicely. She'll stay there until we head back to Wilmington.
We are confident that this is just a small step backward, and look forward to returning home.
Wendy
Monday, February 11, 2008
Day 100+ I've lost count
Still plodding along here. Nothing exciting going on. We went to the dr. here in Wilmington last Thursday and he was very impressed with how well Peter is doing. His numbers are great - ahead of where they were expected to be. We were both pleased to hear this.
We've both used the treadmill exactly once. The weather has been so nice here lately that we go over the Carolina Beach and walk the lake with the dog. All three of us need the exercise. It is .67 miles and right now we have worked up to twice around with a rest in between. We won't break any speed records but at least we are all up and moving.
Eating/taking meds is becoming an issue. Peter's appetite is practically non-existent, so he's not eating enough to keep a bird alive. Since his stomach is empty alot, he gets nauseaus when he takes his meds, so then he's not wanting to eat and so it goes - a vicious circle. I went grocery shopping today at Walmart (I think every senior citizen in New Hanover county was there) and bought lots of high calorie/protein snack food in hopes this will get him eating again.
The most excitement we get is watching all the heavy equipment moving dirt on the golf course in back of us. There are dump trucks, and bulldozers and a steam shovel. I hope they have a plan, but it sure doesn't seem like it. Right now everything in the house is vibrating - they are right behind us!
Nothing else is new here. Cards of encouragement and emails/phone calls would be appreciated.
Wendy
We've both used the treadmill exactly once. The weather has been so nice here lately that we go over the Carolina Beach and walk the lake with the dog. All three of us need the exercise. It is .67 miles and right now we have worked up to twice around with a rest in between. We won't break any speed records but at least we are all up and moving.
Eating/taking meds is becoming an issue. Peter's appetite is practically non-existent, so he's not eating enough to keep a bird alive. Since his stomach is empty alot, he gets nauseaus when he takes his meds, so then he's not wanting to eat and so it goes - a vicious circle. I went grocery shopping today at Walmart (I think every senior citizen in New Hanover county was there) and bought lots of high calorie/protein snack food in hopes this will get him eating again.
The most excitement we get is watching all the heavy equipment moving dirt on the golf course in back of us. There are dump trucks, and bulldozers and a steam shovel. I hope they have a plan, but it sure doesn't seem like it. Right now everything in the house is vibrating - they are right behind us!
Nothing else is new here. Cards of encouragement and emails/phone calls would be appreciated.
Wendy
Wednesday, February 6, 2008
Day + 97 Wilmington
No, we have not fallen off the face of the earth - we've just been sorta hanging out here in Wilmington.
We left Durham last Wed. Even though we had made 2 trips home before, the car was stuffed - Peter rode with Annie in his lap! It has taken a week, but the house finally does not look like we just arrived home; all we need to do is put away the large suitcase.
Life is proceeding. I posted stuff on Craigslist and we spent the weekend helping people put our stuff into their cars. We had the treadmill we bought delivered and it took 3 people to get it up the stairs - weighs over 300 pounds. Finally got it put together and in place today and it sure is nice; so quiet you can't tell that it is running. It has a built in heart rate monitor so if we can figure out how to program that, will get started with some training.
Peter seems to be having bigger swings in how he feels. Some days he is great and full of energy and then the next day or two he feels awful and gets very discouraged. He's had alot of nausea and is not eating much which causes the meds he takes to really irritate his stomach which causes nausea. Kinda a vicious circle. I nag him as much as possible to eat, but sometimes it's like hitting the old brick wall.
We go to the oncologist here tomorrow. Hopefully he has not lost any weight, and all his numbers will be continuing to improve. Dr. Horwitz (Duke) called on Tuesday and said that the results from the bone marrow biopsy from last week were excellent! His said his immune system continues to be improving on a faster pace than usual. Still have to watch out for "bugs" of all types - the immune system is doing good but not that good.
I am very disappointed with Travelocity.com. Peter's mother and sister are coming next month to visit. I was online searching for flights and found a great one. By the time I had searched for the next flights they would need and went back to book the flight the price had doubled+. It is aggravating that they will tell you that there are only 3 seats left, but not that the fares will change in 5 minutes. AND there is no where to send them an email to complain.
Anyway, it will be nice to see his mom and sister. They'll be here from Sat. to Thursday. We may have a visit to Duke and take them along with us.
Not much else going on here. Hope you all are having a great day!
Wendy
We left Durham last Wed. Even though we had made 2 trips home before, the car was stuffed - Peter rode with Annie in his lap! It has taken a week, but the house finally does not look like we just arrived home; all we need to do is put away the large suitcase.
Life is proceeding. I posted stuff on Craigslist and we spent the weekend helping people put our stuff into their cars. We had the treadmill we bought delivered and it took 3 people to get it up the stairs - weighs over 300 pounds. Finally got it put together and in place today and it sure is nice; so quiet you can't tell that it is running. It has a built in heart rate monitor so if we can figure out how to program that, will get started with some training.
Peter seems to be having bigger swings in how he feels. Some days he is great and full of energy and then the next day or two he feels awful and gets very discouraged. He's had alot of nausea and is not eating much which causes the meds he takes to really irritate his stomach which causes nausea. Kinda a vicious circle. I nag him as much as possible to eat, but sometimes it's like hitting the old brick wall.
We go to the oncologist here tomorrow. Hopefully he has not lost any weight, and all his numbers will be continuing to improve. Dr. Horwitz (Duke) called on Tuesday and said that the results from the bone marrow biopsy from last week were excellent! His said his immune system continues to be improving on a faster pace than usual. Still have to watch out for "bugs" of all types - the immune system is doing good but not that good.
I am very disappointed with Travelocity.com. Peter's mother and sister are coming next month to visit. I was online searching for flights and found a great one. By the time I had searched for the next flights they would need and went back to book the flight the price had doubled+. It is aggravating that they will tell you that there are only 3 seats left, but not that the fares will change in 5 minutes. AND there is no where to send them an email to complain.
Anyway, it will be nice to see his mom and sister. They'll be here from Sat. to Thursday. We may have a visit to Duke and take them along with us.
Not much else going on here. Hope you all are having a great day!
Wendy
Tuesday, January 29, 2008
Day + 90 (I think) WE'RE FREE!
Good news - we were at the clinic this morning and the nurse practitioner came over and said they were going to do a bone marrow aspirate, pull the Hickman catheter and then we could go home. We were both a bit surprised, so I asked if she meant home to Wilmington and she said yes! So we are going to pack up the car and head back to Wilmington tomorrow and we don't need to return to Durham until Feb. 20.
The doctor and his staff are all very pleased with how well Peter has done. All his counts are great and he will be monitored once weekly in Wilmington. As long as he is careful, continues to avoid crowds and doesn't catch cold or any viruses all will be good. He will continue to need daily naps so that his system doesn't get runned down.
The bone marrow aspirate seemed to go well today, of course Peter had a happy pill before that so he was ok during it. After she finished the aspirate she told him to roll over, take off his shirt, and proceeded to remove the Hickman catheter from his chest. He was abit surprised at how she did it - she wrapped the exposed part of the catheter around her hand, put the other hand on his chest, told him to take a deep breath and blow out slowly, and then she just pulled it out. It seemed to come out fairly easily - the part that went into his chest and into the right atrium of his heart was about 12-15 inches long! I asked Peter if he wanted to save it to display at home, but he felt that he had had it long enough and it could go into the trash here.
Discharge instructions were quite interesting. He can drive, but needs to "re-learn" in empty parking lots and avoid traffic for awhile. He will stay on several of his meds for just a few more weeks, but some will stay for 6 mos-1 year and I think he stays on one drug for the rest of his life. One thing we did not realize is that a fungal lung infection could be fatal - it is hard to treat especially if it is not caught early enough. That means no yard work of any kind and limited exposure to the basement. Thank goodness we are in a townhouse and the yardwork is included in the home owner's dues!
That's all the news for now. I will continue to update the blog, probably only on a weekly basis. Please feel free to email (wendywhy@charter.net) or call when we are home. We would love to talk to everyone.
Wendy
The doctor and his staff are all very pleased with how well Peter has done. All his counts are great and he will be monitored once weekly in Wilmington. As long as he is careful, continues to avoid crowds and doesn't catch cold or any viruses all will be good. He will continue to need daily naps so that his system doesn't get runned down.
The bone marrow aspirate seemed to go well today, of course Peter had a happy pill before that so he was ok during it. After she finished the aspirate she told him to roll over, take off his shirt, and proceeded to remove the Hickman catheter from his chest. He was abit surprised at how she did it - she wrapped the exposed part of the catheter around her hand, put the other hand on his chest, told him to take a deep breath and blow out slowly, and then she just pulled it out. It seemed to come out fairly easily - the part that went into his chest and into the right atrium of his heart was about 12-15 inches long! I asked Peter if he wanted to save it to display at home, but he felt that he had had it long enough and it could go into the trash here.
Discharge instructions were quite interesting. He can drive, but needs to "re-learn" in empty parking lots and avoid traffic for awhile. He will stay on several of his meds for just a few more weeks, but some will stay for 6 mos-1 year and I think he stays on one drug for the rest of his life. One thing we did not realize is that a fungal lung infection could be fatal - it is hard to treat especially if it is not caught early enough. That means no yard work of any kind and limited exposure to the basement. Thank goodness we are in a townhouse and the yardwork is included in the home owner's dues!
That's all the news for now. I will continue to update the blog, probably only on a weekly basis. Please feel free to email (wendywhy@charter.net) or call when we are home. We would love to talk to everyone.
Wendy
Monday, January 21, 2008
Day + 82 Still going good
Well, life continues on here in Durham. I think I can safely say that we are both officially bored! We are tired of the apartment, the clinic and to an extent each other. Sure will be glad to get back to Wilmington for good - hopefully in about 2 weeks.
All continues to go well at the clinic. Counts are good except for magnesium which he has had at the clinic the past two times even with the home infusion. He continues to decrease the prednisone and has decreased the insulin a bit. The goal now is no prednisone and insulin only once daily. The main delay has been the very gradual decline that is needed for the prednisone. I guess it is not a good thing to stop it really quickly.
We kept busy this weekend. Had dinner and played cards with 2 couples from Cary on Friday night, a great home cooked meal. We were out until midnight!!! Sat. we stayed home and waited for the snow that really never came. Yesterday we visited with our gang and gang grandbabies - they are so cute. Lydia told Peter that she had a mask she could wear also, and not to worry, she had no germs. Miles looks just like his daddy.
Movie report: "The Bucket List" is a must see. It is sad but great. Jack Nicholson and Morgan Freeman are great together. It's a well done movie, the scenery is great and there is laughter and tears. Don't miss it.
We have decided to blame the cold weather on Annie, our dog. Ever since we brought her with us to the hotel, it has been very cold - especially at 7AM and 11PM. We sure do enjoy having her with us though. We didn't realize how much stuff she really tracks into the house until the house became 2 rooms - amazing!
We don't return to the clinic until Thursday and then we spend a long weekend in Wilmington. We'll be bringing another load of stuff home so that when we are finally able to leave we can make it home in one trip.
Patient privacy is a good thing, but it can be very frustrating also. We have lost track of one of our buddies, haven't seen her at clinic at all this week, and the staff can tell us nothing. The other couple that we have gotten to know well have not seen her either. It is a bit unsettling because this is a life or death situation for each person here. Hopefully she will show up this week.
Hope you all have a great day!
Wendy
All continues to go well at the clinic. Counts are good except for magnesium which he has had at the clinic the past two times even with the home infusion. He continues to decrease the prednisone and has decreased the insulin a bit. The goal now is no prednisone and insulin only once daily. The main delay has been the very gradual decline that is needed for the prednisone. I guess it is not a good thing to stop it really quickly.
We kept busy this weekend. Had dinner and played cards with 2 couples from Cary on Friday night, a great home cooked meal. We were out until midnight!!! Sat. we stayed home and waited for the snow that really never came. Yesterday we visited with our gang and gang grandbabies - they are so cute. Lydia told Peter that she had a mask she could wear also, and not to worry, she had no germs. Miles looks just like his daddy.
Movie report: "The Bucket List" is a must see. It is sad but great. Jack Nicholson and Morgan Freeman are great together. It's a well done movie, the scenery is great and there is laughter and tears. Don't miss it.
We have decided to blame the cold weather on Annie, our dog. Ever since we brought her with us to the hotel, it has been very cold - especially at 7AM and 11PM. We sure do enjoy having her with us though. We didn't realize how much stuff she really tracks into the house until the house became 2 rooms - amazing!
We don't return to the clinic until Thursday and then we spend a long weekend in Wilmington. We'll be bringing another load of stuff home so that when we are finally able to leave we can make it home in one trip.
Patient privacy is a good thing, but it can be very frustrating also. We have lost track of one of our buddies, haven't seen her at clinic at all this week, and the staff can tell us nothing. The other couple that we have gotten to know well have not seen her either. It is a bit unsettling because this is a life or death situation for each person here. Hopefully she will show up this week.
Hope you all have a great day!
Wendy
Tuesday, January 15, 2008
Day + 76 All is well
We spent a long rainy weekend in Wilmington; it was great to be there even in the rain! Spent most of the time puttering around and just trying to remember where we keep things there. It seems that we never really finished moving in because Peter was getting sick almost from the beginning so it doesn't look like we really live there. Being in Durham since mid-October hasn't helped much either. Once we get to Wilmington permanently we will finish getting settled.
All continues to go well at the clinic. Platelets are moving steadily up - 91 today - and many other values are moving into the normal ranges. Still not keeping up with the magnesium. Peter takes 4 pills/day and then has a mag infusion 3x/week and the levels are usually borderline. He continues to slowly taper the prednisone and as that decreases his blood sugars are starting to become more normal. Hopefully no prednisone will equal no insulin.
We picked Annie (our dog) up on Friday from Heather's house. We are so thankful that she was able to keep Annie for as long as she did. It gave us both peace of mind knowing that Annie was being well cared for. Of course, Annie is trying to make up for lost time playing with her toys, chasing her ball and "squirreling" on the bed. She's with us at the hotel now and seems to be adjusting fairly well. As long as she sees her bed and our stuff, she seems to be good.
No clinic again until Friday. The nurse practicioner told us today that we would probably do 2-3 more weeks of 2x/week and then be discharged. Keep your fingers crossed for that!
TTFN,
Wendy
All continues to go well at the clinic. Platelets are moving steadily up - 91 today - and many other values are moving into the normal ranges. Still not keeping up with the magnesium. Peter takes 4 pills/day and then has a mag infusion 3x/week and the levels are usually borderline. He continues to slowly taper the prednisone and as that decreases his blood sugars are starting to become more normal. Hopefully no prednisone will equal no insulin.
We picked Annie (our dog) up on Friday from Heather's house. We are so thankful that she was able to keep Annie for as long as she did. It gave us both peace of mind knowing that Annie was being well cared for. Of course, Annie is trying to make up for lost time playing with her toys, chasing her ball and "squirreling" on the bed. She's with us at the hotel now and seems to be adjusting fairly well. As long as she sees her bed and our stuff, she seems to be good.
No clinic again until Friday. The nurse practicioner told us today that we would probably do 2-3 more weeks of 2x/week and then be discharged. Keep your fingers crossed for that!
TTFN,
Wendy
Tuesday, January 8, 2008
Day + 69 Thymus no go
Got a bit of disappointing news today - the thymus gland transplant has been cancelled. It seems that the tissue they were growing was not acting normally - seemed to be growing very fibrous instead of normal tissue - so the whole transplant will not happen. The dr. said that even if they found another donor today, by the time the tissue was cultured Peter would be passed the timeframe stipulated in the protocol. The dr. was very appreciative of Peter's willingness to have the procedure and said that even though it would not happen, at least now they could report that there was interest in the procedure and hopefully this would interest others to volunteer.
We had a great weekend! Before we left Saturday we met friends for lunch and later Heather was out for a visit. We got to Wilmington about 8PM and found the inside temp. to be 55 so we cranked up the heat and turned on the gas fireplace. Furnace ran most of the night but finally caught up. Of course by Sunday afternoon and Monday it was warm enough that we had the doors open! We both puttered around in the house, got laundry done and just relaxed. After breakfast on Monday we even went and walked on the beach.
Clinic visits are now twice a week. If it works out we may be spending most weekends in Wilmington. Hopefully in another 2-3 weeks Peter will only need bloodwork once a week and we are hoping that can be done in Wilmington. He still tires very easily and will need to avoid crowds for several more months, but it sure will be nice to move back home.
That's about it from here,
Wendy
We had a great weekend! Before we left Saturday we met friends for lunch and later Heather was out for a visit. We got to Wilmington about 8PM and found the inside temp. to be 55 so we cranked up the heat and turned on the gas fireplace. Furnace ran most of the night but finally caught up. Of course by Sunday afternoon and Monday it was warm enough that we had the doors open! We both puttered around in the house, got laundry done and just relaxed. After breakfast on Monday we even went and walked on the beach.
Clinic visits are now twice a week. If it works out we may be spending most weekends in Wilmington. Hopefully in another 2-3 weeks Peter will only need bloodwork once a week and we are hoping that can be done in Wilmington. He still tires very easily and will need to avoid crowds for several more months, but it sure will be nice to move back home.
That's about it from here,
Wendy
Saturday, January 5, 2008
Day +66 Life is Good
It's Saturday and as usual all is quiet. We both had a good day Thursday. Peter & Fred had a great "playdate". The play I saw was excellent - 2 person cast "Love Letters". I got a chance to catch up with my stitching buddies and I think I am up to date on what is happening with everyone. We went out to dinner with Cindi and Fred Thursday night before we came back here to Durham.
No change in status at the clinic - all counts remain good. The thymus transplant is set for Wed. afternoon. They are going to do it at Duke Hospital rather than at the ambulatory surgery dept. at the clinic. It should be a fairly simple procedure so we are not anticipating any problems.
The drs. at the clinic said we could go back to Wilmington for an overnight visit, so we plan to leave late today and come back here late Monday. It will be nice to sleep in our own beds for a night or two, and to do laundry without needing a pocketfull of quarters! We've probably got a full car load to take home already - it's amazing how quickly you can acquire things.
We've started asking the staff when they think we might be done at the clinic and they are very hesitant to start talking about it yet. After the thymus procedure we will start pressing a bit more. We are both hopeful that it is sooner rather than later.
We met Roy & Arlene for lunch and had a great time. Heather should be out in a short while for a visit. We are so lucky that our family and friends keep in touch with us so that we are not alone for long.
Have a great weekend!
Wendy
No change in status at the clinic - all counts remain good. The thymus transplant is set for Wed. afternoon. They are going to do it at Duke Hospital rather than at the ambulatory surgery dept. at the clinic. It should be a fairly simple procedure so we are not anticipating any problems.
The drs. at the clinic said we could go back to Wilmington for an overnight visit, so we plan to leave late today and come back here late Monday. It will be nice to sleep in our own beds for a night or two, and to do laundry without needing a pocketfull of quarters! We've probably got a full car load to take home already - it's amazing how quickly you can acquire things.
We've started asking the staff when they think we might be done at the clinic and they are very hesitant to start talking about it yet. After the thymus procedure we will start pressing a bit more. We are both hopeful that it is sooner rather than later.
We met Roy & Arlene for lunch and had a great time. Heather should be out in a short while for a visit. We are so lucky that our family and friends keep in touch with us so that we are not alone for long.
Have a great weekend!
Wendy
Wednesday, January 2, 2008
Day + 63 Good News
Happy New Year! Our internet access was out for awhile so I had to wait until going to the clinic to update anything.
The good news is that there is a donor for the thymus gland transplant. Peter is now known at the clinic as "the thymus". They are running tests on it now and as far as we know if all is right he will get the transplant on the 10th. That would be day 71 - the very end of the window of opportunity. They tell us this will not extend our time here in Durham and I sure hope they are not fudging that. We are both really tired of being here and ready to pick up our precious pup Annie and go back home to Wilmington.
We had a nice quiet Christmas and New Years. We spent Christmas day with Heather at Linda and Jim's house. Linda made stuffed cornish game hens that were fabulous. We started a jigsaw puzzle but will have to go back again to finish it.
Kim and Todd came the day after Christmas and we had our family time then. After opening our gifts we went to Carrabas for a great meal. Heather left the next day to go to Cincinnati to visit a friend, and Kim and Todd stayed until Friday morning.
All remains the same at the clinic. We go 4 days a week for bloodwork and usually only need magnesium once a week while there. We went to the movies last Thursday to see "National Treasures"; in my opinion, not as good as the first one. We try and get out each day even if it is just to walk to CVS to get drugs. Now that it is really cold (a few flurries fell awhile ago), we are not as motivated to leave our nest.
I think I had a partial meltdown over the weekend. Friday afternoon/evening I had a terrific stiff neck and shoulder pain. Peter massaged my shoulders and I used my tennis ball to try and work out some of the knots. Finally got some relief and fell asleep. I am sure it is all stress related and I find that by the end of the day I am usually knotted up again. Sunday I ended up at Duke Urgent Care with a flare-up of diverticulitis - nut and stress related - so now I'm on antibiotics and trying to eat a bit more sensibly. Needless to say, New Year's Eve and Day were very quiet for us - slept alot of the time.
Peter was a bit bummed out yesterday. We got news that one of the women who got her transplant 5 days after he did is going home already. I reminded him that everyone is different and we don't know what her circumstances are. He hasn't actually talked to her yet to see what she has to say, but it sure frustrates him, especially since he has been doing so much better than she has, and now she gets to go home.
Tomorrow we both have a treat. I have theater tickets in Sanford (about 1 hour from Raleigh) with some of my stitching buddies, so while I am there our good friend Fred will be babysitting. He intends to beat Peter at cribbage several times and then I am sure they will find some way to get into trouble. This is definitely something we both need.
We're gonna try and make an overnight trip to Wilmington next week. Peter is going to see if his dr. will let him go. He really wants to get back to the house just to check things out for himself. Keep your fingers crossed for us.
Hopefully I will find out what the problem is with our internet access at the hotel and then I can (and maybe Peter too) update the blogs more frequently.
Have a great day!
Wendy
The good news is that there is a donor for the thymus gland transplant. Peter is now known at the clinic as "the thymus". They are running tests on it now and as far as we know if all is right he will get the transplant on the 10th. That would be day 71 - the very end of the window of opportunity. They tell us this will not extend our time here in Durham and I sure hope they are not fudging that. We are both really tired of being here and ready to pick up our precious pup Annie and go back home to Wilmington.
We had a nice quiet Christmas and New Years. We spent Christmas day with Heather at Linda and Jim's house. Linda made stuffed cornish game hens that were fabulous. We started a jigsaw puzzle but will have to go back again to finish it.
Kim and Todd came the day after Christmas and we had our family time then. After opening our gifts we went to Carrabas for a great meal. Heather left the next day to go to Cincinnati to visit a friend, and Kim and Todd stayed until Friday morning.
All remains the same at the clinic. We go 4 days a week for bloodwork and usually only need magnesium once a week while there. We went to the movies last Thursday to see "National Treasures"; in my opinion, not as good as the first one. We try and get out each day even if it is just to walk to CVS to get drugs. Now that it is really cold (a few flurries fell awhile ago), we are not as motivated to leave our nest.
I think I had a partial meltdown over the weekend. Friday afternoon/evening I had a terrific stiff neck and shoulder pain. Peter massaged my shoulders and I used my tennis ball to try and work out some of the knots. Finally got some relief and fell asleep. I am sure it is all stress related and I find that by the end of the day I am usually knotted up again. Sunday I ended up at Duke Urgent Care with a flare-up of diverticulitis - nut and stress related - so now I'm on antibiotics and trying to eat a bit more sensibly. Needless to say, New Year's Eve and Day were very quiet for us - slept alot of the time.
Peter was a bit bummed out yesterday. We got news that one of the women who got her transplant 5 days after he did is going home already. I reminded him that everyone is different and we don't know what her circumstances are. He hasn't actually talked to her yet to see what she has to say, but it sure frustrates him, especially since he has been doing so much better than she has, and now she gets to go home.
Tomorrow we both have a treat. I have theater tickets in Sanford (about 1 hour from Raleigh) with some of my stitching buddies, so while I am there our good friend Fred will be babysitting. He intends to beat Peter at cribbage several times and then I am sure they will find some way to get into trouble. This is definitely something we both need.
We're gonna try and make an overnight trip to Wilmington next week. Peter is going to see if his dr. will let him go. He really wants to get back to the house just to check things out for himself. Keep your fingers crossed for us.
Hopefully I will find out what the problem is with our internet access at the hotel and then I can (and maybe Peter too) update the blogs more frequently.
Have a great day!
Wendy
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