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
Tuesday, January 29, 2008
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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