Monday, July 8, we had a busy day scheduled but I felt it would be very doable. We needed to get blood work at UIC as well as see Gary's heart doctor at MacNeal hospital. I assumed that we would be on our way home by 10:30am and have time to go home, eat lunch, have a quick rest all before we would need to turn around and go to MacNeal for Gary's appointment with his heart doctor at MacNeal. UIC is on the outside of downtown Chicago and MacNeal is in Berwyn, east and south of us and south and a bit west of UIC. I was wrong!!! We got to UIC, parked, registered to have his blood work done, went up to the lab, and that's where things started going wrong. They said they had no orders for blood-work so...... I tried calling the transplant nurse and when I got no answer, we decided to walk to the Clinic which is in the next building. We explained with the receptionist what was going on and she said she would check with the transplant nurse and they would do the blood work there. Well...... I checked at one point whether he should go ahead and take his 9am meds which by then were rather late already and was told no, wait until after the blood is drawn. By 11am, still no blood draw but again told to wait with taking the medication (now we're 2 hours past time). You don't want to be a pain because you realize they are busy, but..... this is your husband and you've been told that it is VERY IMPORTANT for him to take his anti-rejection medication at 9am and 9pm except on blood clinic days when you take it right after the blood work is drawn which usually is close to that time. Finally, I think it was about 11:30am that he finally had his blood drawn and he was able to take his 9am medications. I decided it was time to find out about his 12 noon medication since one shouldn't double the dose of medication, some of which is the same. I "re-explained" what had all transpired that morning (didn't feel I needed to take the blame -- I'm good enough at making myself feel guilty without having someone else help me feel worse). Needless to say.......... we didn't go home in between, and I felt the least prepared then I've been in a long time in taking Gary to his heart doctor appointment.
We stopped at a McDonalds on the way (one good way to up Gary's salt intake, I figured) to his heart doctor appointment and were there in plenty of time. This nurse, like the kidney doctor's office, was surprised at Gary's weight loss (so much for the telephone calls I made to all his doctors about the transplant -- word didn't appear to get totally through). The doctor was very happy with how Gary is doing and even suggested that one of the heart medications that he is on, can be dropped because of research that he has learned is not as helpful as originally thought. Since Gary is a transplant patient, all changes to his medications need to be approved by the transplant doctors, so, Gary's doctor called the transplant nurse to let them know that he was fine if they wanted to drop that medication. Since he got the answering machine, nothing was changed that day.
On Friday evening, July 12, we drove to Bradley and Laura's home so that Andrew could participate with Bradley in a triathlon in by there home. It was good to be able to spend time together as a family, but it is amazing how just a drive of 2 hours and the heat, which we were already dealing with at home, can tire Gary out and somewhat set him back, so, Gary spent most of the time sleeping or just resting in their home, with the company of Bradley and Laura's dogs, Bear and Bud, who also enjoy sleeping and resting. If we would go somewhere, we'd make sure he had whatever he needed, which usually included a glass of Crystal Light and a comfortable place to sleep. Overall, it was nice for him to have a "change of scenery" and great for us all to get to spend time together. As to how Bradley and Andrew did? I really don't know for sure, but Bradley was proud that he still beat Andrew overall, even though Andrew was faster then him in the running part of the triathlon.
Thursday afternoon, I called the transplant nurse to make sure that Gary's blood work for his Friday appointment was ordered since when we had been there July 8, there was quite a mix up with his blood work. Rather then go through that again, I decided to be "pro-active" and make sure it was ordered. Our appointment was scheduled (not by our choice, we are just told what time our appointment is) for 1:20 PM, but, we need to be at the hospital for blood work at 9am, since it is best that the blood work is 12 hours after his last dose of his anti-rejection medication and before he takes his next dose so they can get an accurate level of the anti-rejection medication in his system.
When we got to the hospital, we registered as usual, and then went to the lab for his blood work. This time when we reached the lab, they had our blood work orders -- Yeah! -- so things went smoothly. Gary was quite happy, since the lab had his favorite kind of band-aids -- Taz band-aids!!! For those of you who know Gary well, you know that he is a BIG TAZ fan! So much so, that when Bradley was little, somehow (I don't recall when or why), Gary nicknamed him Taz. Gary was quite excited one of the first times he went for blood work at UIC that they had Taz band-aids, but ever since then, he's only gotten a cotton ball with tape over it, much to his disappointment so, getting Taz band-aids made his day.
We took our usual rests and time to walk to the clinic, and proceeded to wait, hoping, that by some chance, we would be seen early. We had to wait. We were not taken in early, and if anything, we were taken in late, but we knew that would probably be the case so had come prepared as best one can.
We finally saw the transplant doctor, and, since we were 3 month post-op, it was a "milestone" visit. It was good for both of us to be able to talk to the doctor and get some of our questions answered. We found out from the clinic pharmacist that what we had done for Gary, upping his over-the-counter of packet medicine, when we were at Bradley and Laura's last weekend, was the correct thing to do, even though, when the doctor heard about it later, he first said we had done the wrong thing, but reversed his thought after hearing what the clinic pharmacist had to say. He also told us that it is good that Gary isn't feeling great yet and doesn't have a lot of energy because if you. He said that basically, if he felt really good too fast, he would do too much too soon and that could cause the new organs to reject.
We also asked about some of his other restrictions and were told that as he feels up to it, he can carry more then 10 lbs, but to take it slow. Also, when he feels strong enough and not shaky or light-headed, he can drive. We asked about him going out more in public and to movie theaters (since that had been one place that he had been told that he shouldn't go), and basically, we were told that the best thing to do is to use common sense and don't live your life in a "bubble". The one thing he mentioned that we should stay away from is buffet restaurants, because at buffets, one doesn't know if everyone's hands are clean, and if anyone is sick and might sneeze or so on the food as they are serving themselves. This is worse for Gary then for most other people, since his immune system is weakened. He also reminded us that when eating, if something smells bad, don't eat it, because if it smells bad, it probably is bad. The doctor asked Gary if his feet or hands were feeling prickly at all. He told us that the loss of feeling (neuropathy), which can be common in diabetics, may reverse itself in time. That is exciting and hopefully will happen in time. He has some, but for 31 years of being a diabetic, it isn't as much as it could be. He also told Gary that his tastes may change because some of his taste buds, whether he realized it or not, might have also been lost, and they too, may come back which may cause him to taste foods differently.
Another thing the transplant doctor talked to Gary about is that the weight drop he has experienced -- aprox 25-30 lbs -- will soon stop. He asked about Gary's appetite. After the transplant he had no appetite, but, it has improved considerably. The way I understood the doctor, he explained that now that he doesn't need insulin anymore, his body doesn't need the food that it needed before, that is, because of the diabetes and the need for insulin, his body would go into a vicious cycle of needing insulin to keep his blood sugars down, but in the process, when his body had too much insulin and his blood sugars would become too low, his body would need more food to bring up the blood sugars which in turn would cause his body to think it required more food. It leads to a vicious cycle. Now, his body has to get used to not needing the extra food that his body required before the transplant. So, although his appetite isn't totally back and at this point he can basically eat what he wants, he will need to watch himself, so that he doesn't become diabetic again.
I've decided I've gained a new respect for the clinic pharmacist and the clinic pharmacist for us. The clinic pharmacist had seen us on Friday before the doctor, and went over Gary's medication list and was quite impressed with the list that Peter and I had put together, even commenting that it was better then theirs. Later, the clinic pharmacist made a comment to the doctor that we keep very precise records, at that particular moment, the clinic pharmacist was referring to the list of Gary's vitals. The clinic pharmacist was also happy with how we had handled Gary while we were gone, upping his over the counter medication. It made me happy, because sometimes, you wonder what they think of you or feel that they think you don't know anything, even though I know that shouldn't be my most important thought. I told her that I felt much more comfortable on what we should do for Gary and when we needed to call in, etc., now, then when Gary first had the transplant -- I guess that all comes with time.
We need to go back for blood work in two weeks and blood work and see the Transplant Doctors again in four weeks. Overall, I feel we had a great appointment. I think everyone wants that "magic pill" that will make everything better at once, but, we need to continue to be patient for Gary to get stronger and feel better and to continue to avoid rejection -- "You have to crawl before you can walk."
I know this was long again, and two posts in two days, but, a lot has been going on so there was a lot I wanted to put into words, therefore, the two long posts. Thank you all for your continued thoughts and prayers. They are very much appreciated.
Love,
Nelly and family
Rest in the Lord, and wait patiently for him.
~~ Psalm 37:7a KJV
