This and That and Talk - My Transplant

@mickj My husband was rolling words and phrases around in his mind for many months before he actually sat down to the computer. Then, he had me work with him on his letter to the donor. While we have not heard from the family, he really would like to. But we don't have any information about the donor except he was a 36 year old man. In the letter, we expressed our gratitude, and the second chance to continue the charitable work we do as a couple, and getting to see his grandchildren grow up.
Ginger

Limiting sugars is something that really needs to happen at our house. How long did it take for you to quit craving sugar?

@jodeej My deal with eating has less to do with no appetite and more to do with staying away from sugars in all of its forms, with the exception of fruits and veggies. And digestion has not been an issue. I've just been a zealot these first few months, and it's probably not very wise or sustainable. But the bummer is that I feel so dang good. Slowly but surely, I'll add some starches as you suggest, but no doubt it will be gradual.

Another interesting thing that has happened to me is that I've got in the habit of limiting my sodium, which I was told to do for the year and a half that I was sick prior to transplant. Under 2 grams was my marching orders. Well, in true zealot fashion, I figured less is better, so I got in the habit of limiting sodium to 1 gram/day. I'm still doing that today, and I don't really have to. In fact, I've been encouraged to bump that up, but I'm so accustomed to not having that sodium taste in my food, adding more is a bit of a chore. Once again, oh the problems I have, right?

I completely understand the deal about writing a donor letter. I, too, wanted to write the letter right after transplant as I was so full of gratitude. For one reason or another, I waited. I've actually written a letter, but I'm holding off on sending it until after the holidays.

@mickj my husband wasn't interested in eating the last few months either. He ate a lot of cereal and white rice. Maybe try those? They are easier to digest and seemed to be tolerated well.

We were actually planning a family trip to the zoo, but got the call the evening before. (9:15 pm) We took off on the 5 hour drive to the hospital. He didn't transplant until 5:00 pm the following evening due to the lung transplant team being delayed. (They have to take the lungs first.)

My husband hasn't written to the donor family yet. He was ready to right after his transplant, but now he is more hesitant. It's just such a huge gift that thank you just doesn't seem enough. We will sit down and write the letter in the future, I'm certain.

Blessings,
JoDee

@contentandwell I don't think my issue is age related. In my pre-transplant life, I was never much of an eater, but I was way overweight (290 lbs). It was never an issue with how much I ate. It was always about what I ate, essentially the antithesis of nutrition. This is just one of many regrets from my life prior to becoming sick.

I think part of my problem relates to being diabetic right after transplant. I knew the meds were not giving me much of a chance (hi prednisone), and tapering off those meds was an uncertainty. And as you know, we have no control over our meds, but we do control what we eat. And I was determined (and still am) to not be diabetic regardless of the medication. So I decided to learn about food and change what I put in my mouth to give myself a chance. The big discovery for me was just how evil sugar is, particularly sucrose and high fructose corn syrup, and to a lesser extent fructose. Trying eat enough without adding bad carbs is quite the challenge. Today, I eat 30 grams of sugar/day, and about 90% of that is from fruit, vegetables and nuts. My latest A1c was 4.6, so it's working for me ... almost too good. I've stayed away from starches, but that's likely to change. I'll get it figured out shortly.

@mickj the only time in my life when I would forget to eat was after the birth of my son. I had to remind myself then, and that was important because I was nursing him. Other than that I am most generally hungry.
I think a lot of people do lose their appetites as they age, but I don't think you are that old. Do try to put some weight back on, even if you have to drink something like Ensure. I have read that as we get older we need to have a little bit of reserves in case we get sick. My BMI is just a little bit over 25, I would like to get it right down to 25, no lower. I'm working on it.
JK

@mickj WOW, you sound like you have made some big, positive changes. That must make you feel really good, you should be proud of yourself. I am proud that I have lost weight and am eating better too. I never drank a lot, a glass of wine with dinner, but I really do miss that.
I was anemic before my transplant but frankly I haven't bothered to look at my monthly labs for that, I will have to next week when I have them again. I always check my creatinine and my platelets because they have been a problem. Quite a few of my numbers are not within the stated range but they must not be a problem I guess. I just figure if they were the transplant team would be on top of it, they always are. I feel very well cared for, which is nice. I did have transfusions with two hospital admissions prior to my transplant. Whenever I think of those days I marvel at the difference. I feel incredibly fortunate to be living a relatively good life, feeling well, etc.
JK

@rosemarya My transplant team has never been too worked up about my anemia, and it's never been to the point of needing a transfusion. But I can feel it, so I had my iron and B-12 checked, and they were just fine. I completely forgot to get folate checked, and hope to get that done this month. I know changes to RBC count & hemoglobin take time based on the production/lifecycle of RBCs. So, hopefully, the reduction in mycophenolate to 250mg 2x/day, combined with a little bit of patience, will do the trick.

The best part of my new life is pretty soft and squishy. It's the realization that I need to make sure I'm happy. To do that, I have to feel good. So the basic things like eating right, hydrating, exercising and sleeping are my priorities. And the short-term result has been that I feel great, and though far from perfect, I'm a better husband, father and friend.

Looking back, it's easy to see just how stupid I was. I was in decent health, relatively successful at work, but I drank way too much, ate horrible food, didn't exercise, and was an overall a crappy person to those that mattered most. At the root of it, I wasn't very happy with myself. It took at severe slap upside the head for me to see this. But I'm not one to cry over spilled milk. I control what I can control and work to simply be a better person.

@contentandwell It's great to hear from others who are taking their new life seriously, doing what they can to help themselves. With the eating thing, for one reason or another, I'm never hungry. I actually have to set alarms (just like for meds) to remind me to eat. It's probably a combination of the meds and what I eat. And it's a bit of an issue, as I can't stop losing weight. I'm a 53 year old male who is a little over 6 feet tall. My first weight when I got home from transplant 5 months ago was 226. This morning, it was 160. I'm working on adding food, but just like drinking lots of water, it's not easy. Oh the problems I have, right?

@gaylea1 I am so happy for you, this is wonderful news. Yep, good riddance to lactulose. When I was feeling any pain in the hospital post transplant my husband would say "remember, no more lactulose!". I didn't mind the xifaxan, except for the cost.
At my transplant center they suggested not writing to the donor family immediately, when their grief was still so raw, so I waited about 3 or 4 months. Almost a year later I did get a response from them telling me quite a bit about their daughter, my donor. It was very moving for me because initially my daughter wanted to be my donor but it turned out that she could not be. The young woman who was my donor had so much in common with my daughter that it was striking -- same name, same age, and same size, and same general profession! I just cannot even think about losing my daughter so the similarities gave me an even greater realization of their grief which I am conscious of daily.
JK