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Mentor

This and That and Talk - My Transplant

Posted by Rosemary, Volunteer Mentor @rosemarya, Apr 9, 2017

As our Mayo Connect community grows, I am constantly meeting organ transplant members on a wide variety of forums with a wide range of issues that are not directly transplant specific. However, because we are all transplant recipients, we have a special connection: a unique journey and best of all - a new life! We don't always need help or advice. Many times we just want to chat with someone like us! That is my purpose in starting This and That and Talk.

Drop in and say 'Hi'. You are welcome anytime.

What do you want t to talk about? What words can you offer to someone who is on the journey? Do you have any questions for another recipient?

Interested in more discussions like this? Go to the Transplants Support Group.

Mentor
Rosemary, Volunteer Mentor | @rosemarya | Dec 6, 2018

@gingerw, @mickj, @jodeej, @contentandwell,

Last summer, I was asked to write about my experience as an organ recipient. I want to share what I wrote about writing to my donor's family.

"...The surgery went well, my new organs began to work right away, and I was beginning to feel like a healthy person again. Family visits were joyful, and I remember hearing the sound of laughter–I looked forward to a future with my loved ones.

I envisioned another family somewhere, grieving. A life had ended, and another life was beginning. On one hand, I was overjoyed and wanted to shout, “I’m alive!” On the other hand, I grieved for the family who had just lost a loved one–my organ donor.

Several months later, I wrote a letter to my donor’s family–it was difficult to find the right words. How does one send condolences, and say thank you at the same time? Relieved, when I finally dropped the letter in the mailbox, I silently wondered how they would receive my message..."

The link to the article can be found in this transplant discussion. I invite you to share your thoughts and comments there, because you are experts by experience, also!
https://connect.mayoclinic.org/discussion/ps-enjoy-your-life-experts-by-experience-1/
__________________________________

Here is a discussion: Writing to Your Donor's Family. I
https://connect.mayoclinic.org/discussion/writing-to-your-donors-family/
Have a wonderful life!
@parmcat - I invite you to this conversation about writing to our donors.

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jodeej | @jodeej | Dec 6, 2018
In reply to @mickj "@gingerw You know more about your donor that I do about mine. How did you find..." + (show)
@mickj

@gingerw You know more about your donor that I do about mine. How did you find out any details at all? Did your transplant team share it with you?

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@mickj @gingerw we had to ask several different people before we found out anything about my husband's donor. All we know is that it was a 50'ish year old woman that had a stroke.

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Mentor
Ginger, Volunteer Mentor | @gingerw | Dec 6, 2018
In reply to @mickj "@gingerw You know more about your donor that I do about mine. How did you find..." + (show)
@mickj

@gingerw You know more about your donor that I do about mine. How did you find out any details at all? Did your transplant team share it with you?

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@mickj Actually, the transplant team was very tight-lipped. We knew the organ was not "on site" since they called Bill and told him to come down, although they weren't sure he could have the surgery. Even as they prepped him for surgery, they commented that they hadn't seen the kidney yet. As he was wheeled into the operating suite, they said "it's a go!" We found out that much about the donor because the physician's assistant accidentally let it slip during one of the first post transplant exams. Some transplant centers will give some info, others guard it like a state secret!
Ginger

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JK | @contentandwell | Dec 6, 2018
In reply to @mickj "@contentandwell I don't think my issue is age related. In my pre-transplant life, I was never..." + (show)
@mickj

@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.

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@mickj I don’t think it’s age related for you either. I presume when you said that you only eat 30 grams of sugar a day you actually mean of carbs. That’s incredible, i can’t imagine keeping it that low. When I was diagnosed I went to a nutritionist and was told up to 30 grams per meal, and two snacks of 15 grams. Of course that was the max recommended but only 30 per day to me sounds as if it might be too few. I know you do need carbs, but it sounds as you are doing very well and if your doctor is good with your diet it must be OK.
Have you spoken to a doctor or nutritionist about what would be the best things to eat to increase your weight without increasing your A1c? I’d be curious to hear what they recommend, even though increasing my weight is unfortunately not a problem I have.
JK

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1 reply
JK | @contentandwell | Dec 6, 2018
In reply to @jodeej "@mickj my husband wasn't interested in eating the last few months either. He ate a lot..." + (show)
@jodeej

@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

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@jodeej Did your transplant center give you examples of letters? I think that can be helpful. If not I would be happy to scan them in and put them out here. Also, my center recommended not writing immediately since the family's grief is so raw then, so it's probably best that he has not written yet.
Honestly, it was the most difficult thing I ever had to write in my life. How do you express extreme gratitude and sympathy all at the same letter? Not easy.
JK

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1 reply
JK | @contentandwell | Dec 6, 2018
In reply to @mickj "@jodeej My deal with eating has less to do with no appetite and more to do..." + (show)
@mickj

@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.

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@mickj I was also told to limit sodium to 2000 mg a day (2 gm) but I find with that much I do retain fluid so I try to keep it to 1500 mg, which seems to work well for me. When I eat out things tend to taste really salty now. I use no salt when I cook and thankfully my husband has adjusted to that too. Actually I had cut way back on salt before all of this happened, so this was not new to us.
JK

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JK | @contentandwell | Dec 6, 2018
In reply to @jodeej "Limiting sugars is something that really needs to happen at our house. How long did it..." + (show)
@jodeej

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

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@jodeej I have adjusted well to limiting salt, but sweets? Nope. I still enjoy them and find them hard to resist.
JK

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1 reply
JK | @contentandwell | Dec 6, 2018
In reply to @gingerw "@mickj My husband was rolling words and phrases around in his mind for many months before..." + (show)
@gingerw

@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

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@gingerw My transplant surgeon would tell me nothing about my donor, not even gender, but the parents responded to my letter to them and told me quite a bit about their daughter, my donor. It made her so real to me that it is even more difficult to think about her and her family now, and the grief they must feel.
JK

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jeanne5009 | @jeanne5009 | Dec 7, 2018
In reply to @contentandwell "@jodeej I have adjusted well to limiting salt, but sweets? Nope. I still enjoy them and..." + (show)
@contentandwell

@jodeej I have adjusted well to limiting salt, but sweets? Nope. I still enjoy them and find them hard to resist.
JK

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I feel your pain..

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jodeej | @jodeej | Dec 7, 2018
In reply to @contentandwell "@jodeej Did your transplant center give you examples of letters? I think that can be helpful...." + (show)
@contentandwell

@jodeej Did your transplant center give you examples of letters? I think that can be helpful. If not I would be happy to scan them in and put them out here. Also, my center recommended not writing immediately since the family's grief is so raw then, so it's probably best that he has not written yet.
Honestly, it was the most difficult thing I ever had to write in my life. How do you express extreme gratitude and sympathy all at the same letter? Not easy.
JK

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JK we got a pamphlet that has ideas and some examples in it. I would appreciate seeing your examples, though, and I'm sure others could use them also.
Blessings,
JoDee

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