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Non-Compliance & Rejection
A Letter from Andi
Our Experience at the Transplant Forum
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August 3. My anxiety has turned to peace. Probably because we spent yesterday moving Andi and Aaron into a new condo rental (2nd floor, no elevator). I'm so tired and so sore that I'm actually looking forward to enforced bed rest and painkillers.

Aaron's parents arrive today. His mom, Sharon, was with us during Andi's broken neck ordeal, and she is a source of great calm and serenity to me, so I am so glad they could come to Miami from Syracuse for the surgery. Not only do Jim and I have a great son-in-law; his parents are pretty special, too. They'll be a great comfort to us all.

Wednesday morning we go in at 7:30 to have our last cross-matching done. The doctor explained that a viral infection could change that and make us incompatible, so we're taking really good care of ourselves this week. We'll spend the rest of Wednesday getting hydrated, I imagine, and the surgeries will take place Thursday morning.

August 5. Wednesday. We are at the hospital at 7:30 in the morning...hurry up and wait to get typed and cross-matched again, then to a room...the usual hospital red tape, although they are nice about it. A long day of tests and questions. I am in 'my' room by 3:00 pm, but my phone is dead. My roommate Pearl, a nice older woman, lets me use her phone. I sneak out to see Andi on the fifteenth floor - I am on the tenth. Six o'clock, I still don't have a phone and doctors and nurses have been chasing me around the hospital and finding me - Andi still has not had her X-ray, but she does have a phone. Clear liquids for both of us all day. Ugh!

Visiting time comes - Jim, Iliana, Aaron and his parents, Kent and Sharon. They are smart, and they come up to Andi's room, somehow knowing I am there too. We have a nice visit and lots of hugs; a turtle pillow and games for Andi, hand and face cream for me, and good wishes and love from friends and co-workers. The waiting now is almost excruciating - we just want it all over with. My surgeon peeks in - reassuring us and family about tomorrow. So far so good - everything still matches! We will get something to help us sleep soon. One last 'see you later' and more hugs - we'll be fine. Here is our pre-transplant picture!

Later, I sneak back up to the fifteenth floor and Andi and I spend time together - we ride up and down on the elevator - Andi is not supposed to go to another floor. We are a bit nervous, but trying to put up a good front for one another. Tomorrow, they will come get us at 7:30 am. We will be in adjoining but separate operating rooms. They will start with me, and then Andi a bit later. They will take about four hours with me, longer with Andi. She will spend at least a couple of days in ICU. I will be back in my room this evening (West 1049). The doctors said that the first 48 hours will be the worst as far as pain is concerned. I am an anesthetists' nightmare - I am allergic to a lot of the painkillers they normally use. My pain threshold is pretty high, though, and visualization techniques will help as well. All in all, I should be up for visitors Saturday, and by then, Andi might be out of ICU. I might even have a phone!

August 6. Thursday. Surgery began at about 10:00 am. Andi was in ICU by about 4:00. Jim said her color is good, and the new kidney already 'passing liquids.' I was back in my room by 5:00. We both have all kinds of tubes and monitors, and contraptions on our legs (to aid circulation) that are an additional source of discomfort. I am very thirsty and can have only a little ice. I don't think I'll be very good company until Sunday...I wish I could see Andi...but she is doing fine and asked how I was. We made it. It can only get better from now on!

August 7. Friday. Because my new roommate's family was being very noisy, they moved me to a private room, 1015, still on the 10th floor - West Wing. No phone calls yet, my throat is still pretty sore from the tubes, and my energy levels pretty low. It took some effort to talk to Josh this morning - my voice is not its usual, but it was great to hear him. I can't wait to see him next week when I'm home.

I am running a slight temperature, which they assure me is normal - just the body's reaction to the trauma of the operation. All I really want to do is sleep, but I sat up for about an hour today at the nurses' urging. My back is sore from the bed already. It is aggravating not to be able to do the things I normally do, and without help. I don't think I'll be good company until I get out of here and I'm back home.

Jim took a picture of me and a picture of Andi with the Polaroid so that we could at least see what the other looks like. Andi is doing great - the new kidney seems to be working perfectly. Andi actually sat up in bed by herself this afternoon. She wants to get up and walk a bit - perhaps they will allow her to do that tomorrow. She's being moved into a private room this evening, and she finally got her glasses (Aaron took them home by mistake with some of the stuff she didn't need). We each can't wait to see the other in the same hug.

August 8. Saturday. I took a little walk around my bed was exhausting. I feel as if I have been in the hospital for months; time passes so slowly here. My energy level and stamina are infuriatingly low. Still not on solids, and they took my pain medication button away. Now I have to ask for a shot, which they actually inject into my IV. I feel like I'm not quite human - Ugh! I hate feeling this way, but I'm just not healing as fast as Andi. Could have something to do with a missing rib on my left side and 25 years.

Andi is doing great! Not only is she getting up and walking around her room, she's been doing laps around the fifteenth floor! Actually, she's walked around her floor unassisted several times - gets up by herself, unplugs her IV unit (an electronic hat-rack looking thing on wheels), slings her catheter bag on a convenient 'clip' at the bottom of the stand, and walks around with it at a pretty normal pace. She even gave herself a sponge bath this morning - she was so proud of herself! The doctors told her that if she keeps up the good work, since she is already on solids, she might be out of here earlier than the expected seven days. She is as eager to get out of here as I am, and agrees that time in the hospital comes to a crawl or stops altogether.

Andi has a transplant manual she is studying. Every transplant recipient gets their very own. In it is all of the information she needs to learn about all of the medication she is taking, the side effects, dosages, what to watch for if one is counteracting another, etc. She'll need to note everything down on a daily basis from her weight, to the amount of salt, sugars, cholesterol, liquid intake, etc. She is going to have to be extra careful about minute things such as getting bruises or scrapes.

Thanks for all of the prayers, cards, e-mails and all around good thoughts for us - we wouldn't have made it this far without so much support and love.

Aug. 9. Sunday. Today is a better day. I didn't hurt so much this morning, the catheter came off, and I am on solids! I still wasn't sure I wanted any visitors, even Jim, since when I was up earlier today, I got tired more quickly than I expected. Andi too had started out the day well and then had a minor setback due to lapsing on the pain medication. Then I got a shot and Andi leveled off on the Percocet, and good thing, too. With Jim's help and an old wheelchair, I finally got to see and touch Andi! It felt so good to really see her, see how healthy she looks is incredible and makes the pain and discomfort worthwhile.

If I continue doing well, I might go home as soon as tomorrow, and Andi as early as Tuesday or Wednesday. She is ready to go home, and I am too. I need to have time resume its normal pace, not this crawling alternate dimension!

My incision is about 12" long, and they removed my lowest rib.

NOTE: Now they can perform the nephrectomy laproscopically. They started doing that at UM/JMH about six months after our surgery. The healing time for the donor is really quick, about 2 weeks back to normal.

Aug. 10. Monday. I am being released today! It's going to be so good to be home. I feel as if I have been away for months. No more poking and prodding and hospital smells! Andi, however, will have to stay at least until tomorrow - she had a bad night last night, a small clot in the catheter and blood in the urine. Today she is much better, but disappointed the episode will keep her from going home today.

I really feel guilty being home while Andi is still at the hospital. She said not to worry, she'll be out soon enough. She was a bit swollen yesterday, and her blood pressure was up. But she can now go for a walk without dragging the electronic hat tree (IV). The catheter will be kept for ten days after she leaves the hospital, to stave off infection and so that urine output can be checked accurately (color and consistency is important as well!).

Aug. 11. Tuesday. It' so nice to be home. My voice is back to normal, I took a shower by my self today (that was great!), I can raise both arms over my head without pain and I'm not in great pain...just a bit of burning, especially if I move too suddenly or turn too far.

Matt, Josh, Aaron and Jim are trying to finish moving the large shelving units from our living room to Andi and Aaron's NEW apartment. Then they will finish the platforms for the beds (just can't have the mattress on the floor after the surgery!). Lucky (our Border Collie) is very happy I'm home, and of course, with Josh here while they work, I'm practically in heaven - my son, grandson, son-in-law and my honey - the only thing missing is Andi - she is still in the hospital.

Today, Andi is still waiting for my doctor to catch up with her doctor, etc. She is really swollen and her blood pressure is really high - there is a great probability that she will not be allowed to leave the hospital today, either. She's ready to go - has her list of things to get: antibacterial soap for bathing from now on, surgical masks to use as needed (when people around her have colds, etc.), a scale to weigh herself with every day, pill boxes, a nice roomy back-pack purse to put everything she'll need to carry around with her from now on, and a planner to keep track of appointments, medications, etc.

Aug. 12. Wednesday. They kept Andi one more day. She had a not-so-great evening last night, although her blood pressure and swelling were down, she had gas pains for a while. But she did get a good night's rest, with no anxiety attacks or palpitations. She might go home today. Looks good!

Today I'm doing ok. It felt like I spent all day on the phone yesterday, though, and it was a bit too much. I still don't have my stamina back, I am still not able to sleep for more than 10 minutes, and have no appetite to speak of, so it might take a little bit of time to get back to my usual. Guess I'm sort of resigned to the fact that it will take time. Well, the pain is manageable, and at least all of the furniture for Andi and Aaron's place got moved. Of course, our place looks like a disaster area...oh, well, huh! Now we are just waiting for Andi to be released from the hospital. Then I can feel like things are on their way back to normal, and I can stop worrying about her being lonely in the hospital.

Aug. 13. Thursday. Wow, it's hard to believe that the surgery was originally scheduled for it is a week to the day since it happened. Thankfully, Andi was released late last night, even though the catheter came out on its own for no apparent reason, and had to be replaced much to her chagrin. Her doctors want her to keep the catheter in until tomorrow, when she will go to the transplant clinic and get her blood work done so they can check the medication levels in her blood, etc.

Before she left the hospital, she was given about a week's supply of all of the medications she will need to take, a calendar sized pill box, with removable boxes for each day of the week, and very specific instructions as to what to take, with food or not, time and how many milligrams or pills to take, and things to watch out for. This she will keep track of in her transplant journal. They also gave her an emergency number to call if anything out of the ordinary should happen. The dosages to most medications will be adjusted as needed, and initially, she will be visiting the transplant clinic three times a week. Nothing is left to chance!

I am not doing well today...everything hurts...must be the weather.

Aug. 14. Friday. Today is a continuation of yesterday - everything still hurts and I can't find a comfortable position sitting or lying down and standing up for long makes me weak and dizzy. The same was true for Andi yesterday - she had trouble finding a comfortable spot, and could not get more than a couple hours of sleep at a time. Andi was at the clinic today for her blood test/check-up; she went in at 9:00 am and got back at 2:00. The good news is they did remove the catheter, and she is much happier. They'll call her between six and seven this evening with the results, and let her know what medication to increase/decrease, or if they should add/take away something. She will need to give herself injections of Epogen three times a week. That's for her anemia. Jim, who has been diabetic for a while, will show her how to do it; the hospital lesson was just too quick.

Again, our thanks for all of the kind messages, e-mails, baskets, cards, casseroles, and especially all of your prayers and good wishes for a speedy recovery. We feel blessed to have such support! Thanks and love!!

Aug. 15. Saturday. After a couple of hours of dread and worry and being on the phone with medical personnel, I think I have phlebitis in my right arm. At first I thought it was a blood clot, because the arm was numb, and I got very concerned, but then it began aching. I will have to get it looked at on Monday. Andi is doing OK - they took her off Lasix, since she lost about ten pounds in one day - much too much water elimination. Otherwise, no infection and minor adjustments to the dosages. Some pain, yes, but the only thing she can take for it is Tylenol. But Aaron is a great source of strength, and they keep each other going.

Aug. 16. Sunday. Another visit to the clinic early this morning. Jim took Andi there and back, since Aaron is working, and we visited for a bit. We are both tired and a bit achy today, and my arm is throbbing. It is difficult to get more than four hours of sleep at a time, and it takes so long for me to get comfortable, it feels as if I got much less.

Aug. 22. Sunday. It's been an uncomfortable week, but that's to be expected when we're no longer 18! I am mending, and hope my strength returns soon. Jim has been working very hard to get our new wall unit in place and our living room is returning to normal.

Andi is doing very well handling the medication regimen. She and Aaron are nicely settled into their loft apt. which they are decorating beautifully. They are really grownups!

I can do some computer work at home now and probably will return to campus the first week in Sept. Thanks for all your good wishes. See you soon.


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