It's been quite some time since I have written on here. Mostly because Gary has been slowly but steadily, gaining strength. Now, having said that, it hasn't been as if everything is all the way better, it is more that as we have, as we had before the Transplant, learned how to help Gary as well as how to notice and anticipate, for the most part, what and when Gary needs something.
Friday was clinic day. We had gone in two weeks before for bloodwork, and this time we were here for both bloodwork and follow-up transplant clinic appointment. We didn't expect any thing drastic, just basically a "you're doing great" appointment and "it'll just take time before you start feeling all the way better and have more energy."
As the Doctor went over Gary's bloodwork from the morning blood draw and compared it to all of his previous bloodwork, she commented that there was trace or small amounts of blood in his urine in all his past bloodwork. She also told us that when he had had a kidney ultrasound in April while in the hospital, they had seen some kind of a spot on one of his own, nonworking kidneys. When they did the transplant, they left in the old kidneys and the old pancreas. It was felt there was less chance of infection or other problems in keeping them then taking them out. She decided that an MRI of his kidneys should be done to make sure that the"spot" wasn't causing the trace or small amounts of blood. She also felt that because of his continual tiredness, they should add more iron tests on the blood that had been drawn that morning. They were able to schedule his MRI for Monday morning.
Gary asked whether he could do more things like mowing the lawn. I was surprised when she told him that he could and that she didn't put any restrictions of at least wearing his hat, sun screen, face mask, and gloves. I was going to ask about any of those restrictions, but by then the discussion was already on to something else and then it wasn't until we were driving home that I remembered that I hadn't asked. I decided we would use common sense. I have also realized, the more I thought about it over the weekend, that the nurses in the hospital were more insistent on wearing a hat, sun screen, face mask,or gloves The doctors have seemed a bit more lax, not that they don't care, they also don't want people to live in bubble. So, as we have been doing since the Transplant, we'll look at both sides, you might say, and "go down the middle of the road". Guess who mowed part of the back lawn Saturday night, you've got it -- Gary, although it definitely wore him out. I think it felt good to him to be able to finally be able to do something. He mowed another part of the back yard on Tuesday afternoon and finished the back yard this afternoon (Wednesday). Our back yard isn't huge, but for him, it took a long time and each time it wore him out.
Monday morning found us at another UIC location down town to have Gary's MRI. Our appointment was at 8am but it was 11am before we were done there. Then it was off to the clinic which is by UIC hospital to have an iron infusion. The results of Gary's blood work on Friday showed that even though he takes 3 iron pills a day, his iron level is still very low and the Doctor feels that he needs to have iron infusions. The nurse told us that the Doctor ordered 10 infusions -- 1 infusion a week. He had his first iron infusion on Monday. It took about 3 hours for the 1st infusion. He will have his 2nd infusion on Friday morning because the infusion nurse will be out of town for 2 weeks so it was felt that he should have 2 this week. So, it looks like we'll be spending a lot more time and days at UIC again. We have not heard any results yet on the MRI and I'm not sure when we will hear for sure.
They also are eliminating (need to go from 3 to 2 to 1 a day over a 2 week period) one of his medications that was helping to stabilize his blood pressure i.e. help his sitting and standing blood pressures not to be so far apart. It was also to help with the dizziness he experiences (he still does experience dizziness even though the numbers are somewhat better).
We still are taking his blood pressure (both sitting and standing) each morning as well as his pulse, temperature, and blood glucose. It's still amazing to all of us how great his blood glucose numbers are and how stable they are after having been a Type 1 diabetic for 31 years with numbers all over the place now that he has a working pancreas.
Some things to pray for:
1) That there will nothing seriously wrong on his old kidney.
2) That they are able to figure out what is causing the trace or small amount of blood in his urine tests.
3) That the iron infusions will help to make him feel better and give him more energy but also to bring his iron levels to where they should be.
4) Strength and energy for me especially since Stephanie and Andrew will soon be leaving for College so they won't be around to help me out. Also, that I won't let the discouragement take hold.
5) Pray for adjustment to having Andrew and Stephanie leaving home for college, for them to have a good transition and great room mates, and for us to adjust to them being gone from home.
I apologize for taking so long to write, but I've been very tired and I'll admit, somewhat discouraged with this going on even though I know it is not nearly as serious as what some of our friends are going through. Please continue to keep us in your thoughts and prayers. We appreciate them very much and appreciate that you are "walking with us on this journey."
Love,
Nelly and the rest of the family
Come to me, all you who are weary and burdened, and I will give you rest.
~ ~ Matthew 11:28 NIV
