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This and That and Talk - My Transplant

Posted by @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?

REPLY

@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

@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

Liked by jeanne5009, gingerw

@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

@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..

@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

@contentandwell

@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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You are right in that 30 grams of total carbs is awfully low, approaching Keto diet territory. That's not what I'm after. I actually eat about 120 total carbs a day. 30 grams of sugar, 50 grams of fiber and the rest are those dreaded unnamed carbs. Not wanting to bump up carbs much more, I've got to increase either proteins or fats. I currently eat about 120 grams of protein and see no value in eating any more. So the last thing I can do is increase fats. I've talked to my nutritionist about this, and she agrees. I've started to eat a little dark chocolate with no sugar, and I'm working up the "courage" to get after avocados. Last night, I even bumped up my carbs a bit by adding some brown rice to my extravagant dinner of carrots, celery and almonds. Baby steps.

@jodeej

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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@jodeej I will look for it this weekend and scan it in. I think I know where it is.
JK

@mickj

You are right in that 30 grams of total carbs is awfully low, approaching Keto diet territory. That's not what I'm after. I actually eat about 120 total carbs a day. 30 grams of sugar, 50 grams of fiber and the rest are those dreaded unnamed carbs. Not wanting to bump up carbs much more, I've got to increase either proteins or fats. I currently eat about 120 grams of protein and see no value in eating any more. So the last thing I can do is increase fats. I've talked to my nutritionist about this, and she agrees. I've started to eat a little dark chocolate with no sugar, and I'm working up the "courage" to get after avocados. Last night, I even bumped up my carbs a bit by adding some brown rice to my extravagant dinner of carrots, celery and almonds. Baby steps.

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@mickj Oh, that's better, 120 grams of carbs. If you add up the allowance they gave me it comes to 195 grams of carbs a day.
120 grams of protein is more than I do, and I think I eat a lot of protein! I must not though because when I get my monthly lab work my protein is always slighter lower than the standard range. I don't know how I could increase it in a healthy way. I can only stomach one egg when I have eggs for breakfast. and I try to keep my meat portion to about 4 ounces.
I love dark chocolate, I just ate a square of Ghiradelli 86%. Many people don't like it that dark but I do.
I love avocados also but they are such a pain to buy. They have a very brief time when they are ripe but not going bad, and I find that I end up throwing out a lot, which at the cost of them I hate doing.
JK

Liked by jodeej

@contentandwell

@mickj Oh, that's better, 120 grams of carbs. If you add up the allowance they gave me it comes to 195 grams of carbs a day.
120 grams of protein is more than I do, and I think I eat a lot of protein! I must not though because when I get my monthly lab work my protein is always slighter lower than the standard range. I don't know how I could increase it in a healthy way. I can only stomach one egg when I have eggs for breakfast. and I try to keep my meat portion to about 4 ounces.
I love dark chocolate, I just ate a square of Ghiradelli 86%. Many people don't like it that dark but I do.
I love avocados also but they are such a pain to buy. They have a very brief time when they are ripe but not going bad, and I find that I end up throwing out a lot, which at the cost of them I hate doing.
JK

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I found that if you mix a little bit of lemon juice in with an avocado, you can freeze it and it won't turn dark. Then you can the it and use it for avacado toast or in a recipe. Saves them from being wasted.

@jodeej

I found that if you mix a little bit of lemon juice in with an avocado, you can freeze it and it won't turn dark. Then you can the it and use it for avacado toast or in a recipe. Saves them from being wasted.

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@jodeej thanks, I’ll have to try that. Of course usually what happens is that I cut one in half and it’s already brown inside.
JK

Today, Connect's member spotlight features someone most of you know very well from the Transplant group. Read Jodee's interview with @rosemarya to find out what brought her to Connect and how she finds balance in life. Puppies or kittens?

– Inspired by Time with Mother Nature: Meet @jodeej https://connect.mayoclinic.org/page/about-connect/newsfeed/inspired-by-time-with-mother-nature-meet-jodeej/

Check out all the Member Spotlights here https://connect.mayoclinic.org/page/about-connect/tab/newsfeed/

Which Connect member would you nominate for a future spotlight?

@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
Well after the 3rd round of preds. I didn't have much will power. It's Christmas and I'm making cookies if it kills me. In Jan. I WILL get on the right track again. I don't have an addictive behavior issue. Even though I have cirrhosis I never drank that much and was able to quit the day the Dr diagnosed me. One lucky thing I guess…

@jeanne5009

@jodeej
Well after the 3rd round of preds. I didn't have much will power. It's Christmas and I'm making cookies if it kills me. In Jan. I WILL get on the right track again. I don't have an addictive behavior issue. Even though I have cirrhosis I never drank that much and was able to quit the day the Dr diagnosed me. One lucky thing I guess…

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@jeanne5009 I have to get on the bandwagon of cookie making too but my son and daughter will not be here until the 26th so I have some time, except for people I want to gift with goodies.
I was like you with drinking. I did drink a glass of wine each evening with dinner and I still miss that but I gave it up of course. I learned a lesson from that too. My son and husband often gifted me with wines more expensive than I would purchase so those were put aside for a special occasion or for when I felt like indulging myself. I ended up having to give them away since most were white or mild reds and my husband, son, and daughter, like cabs.
JK

@contentandwell

@jeanne5009 I have to get on the bandwagon of cookie making too but my son and daughter will not be here until the 26th so I have some time, except for people I want to gift with goodies.
I was like you with drinking. I did drink a glass of wine each evening with dinner and I still miss that but I gave it up of course. I learned a lesson from that too. My son and husband often gifted me with wines more expensive than I would purchase so those were put aside for a special occasion or for when I felt like indulging myself. I ended up having to give them away since most were white or mild reds and my husband, son, and daughter, like cabs.
JK

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@contentandwell Today I will make some peppermint bark for husband to take in to his work. Then Tues make another batch for the prayer shawl group meeting on Wed. In years past I did cookies or fruitcake. But having a sweet tooth, it became too much for me. I can't have chocolate, don't like chocolate, so making the bark is ok. Like you and @jeanne5009 wine was always in my pantry, with a glass or two at night. Now, it is a homemade wine cooler or small hard cider once a week, maybe. Ah, how things change!
Ginger

@gingerw

@contentandwell Today I will make some peppermint bark for husband to take in to his work. Then Tues make another batch for the prayer shawl group meeting on Wed. In years past I did cookies or fruitcake. But having a sweet tooth, it became too much for me. I can't have chocolate, don't like chocolate, so making the bark is ok. Like you and @jeanne5009 wine was always in my pantry, with a glass or two at night. Now, it is a homemade wine cooler or small hard cider once a week, maybe. Ah, how things change!
Ginger

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@gingerw I made snickerdoodles for the first time last year and loved them. My daughter and I love nutmeg so I mixed that with the cinnamon, put white chocolate chips in, and they were delicious.
Having had a liver transplant alcohol is taboo. My surgeon did say once in a great while for a very special occasion, I could have a glass of wine. So last year at my daughter's wedding I did have a glass of champagne. I haven't actually seen a reason to not drink as long as you exercise extreme moderation, and I have heard of some people whose doctors said once a month, but I am going with the absolute rules.
JK

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