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.

@mickj

Hey @contentandwell I recently had a liver transplant (5 months ago). Pre-transplant, we talked about doing liver+kidney, but we opted not to go that route. My kidneys were not horrible, but not very good either (creatinine 1.7, GFR 45). Post transplant, my transplant team never said anything about bumping up liquids. They also said nothing about limiting liquids.

My kidney function has improved post-transplant, but it's still nothing to phone home about (creatinine 1.3-1.4, GFR 55-65). Certainly Tacrolimus isn't helping. But I'm only taking .5mg 2x per day, and the tacrolimus level in my body is in the 3-5 range. So any effect that it's having on my body is not going to lessen. I figure I better do everything I can to help out my kidneys. And lots of water (4-5 liters/day) is a big part of that. At least that's the way this armchair doctor sees it.

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@mickj It's good that you are getting lots of liquids in despite your transplant team not recommending it. Hopefully this will keep things from getting too bad, same thing I am hoping for myself. 4 - 5 liters is even more than I get in.
JK

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@mickj

Hey @contentandwell I recently had a liver transplant (5 months ago). Pre-transplant, we talked about doing liver+kidney, but we opted not to go that route. My kidneys were not horrible, but not very good either (creatinine 1.7, GFR 45). Post transplant, my transplant team never said anything about bumping up liquids. They also said nothing about limiting liquids.

My kidney function has improved post-transplant, but it's still nothing to phone home about (creatinine 1.3-1.4, GFR 55-65). Certainly Tacrolimus isn't helping. But I'm only taking .5mg 2x per day, and the tacrolimus level in my body is in the 3-5 range. So any effect that it's having on my body is not going to lessen. I figure I better do everything I can to help out my kidneys. And lots of water (4-5 liters/day) is a big part of that. At least that's the way this armchair doctor sees it.

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I am curious. I am a transplant patient, also. 9 years ago I received a liver and a kidney. A few years back, a kidney stone was found on a scan and i was directed to drink 3 liter a day. It is not an easy task for me on many days, but I keep a pitcher of water on my kitchen counter, and work all day long to get it down. How do you manage to consume 4-5 liters of water daily? It sounds like a lot. Did your transplant team tell you to drink that much? Thanks.

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@threerrr3

No dialysis yet but I’m a stage 5 hanging in there ! Hopefully the transplant before that happens .. how did you know it was time for dialysis? What made them say it is time ? I’m hoping the transplant happens first but wondering is there are more signs ?

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threerrr3, One of the benefits of a transplant from a living donor is to avoid dialysis. I wish you well. Stay in touch and keepmus posted.

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@threerrr3

Wow you really had your fair share !! How are you doing now ? I know that anti rejection meds can be harsh over time ! And my transplant was in 1998 , so back then I think went heavy on the drugs verses what they give now ... very interested in talking to you more on why and just questions since you are out even longer then myself .. and I’m working with my sisters for a a living donor ... I was wondering if you are going thru the topical skin cancer and stuff also .. thank you

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I have been doing well since my kidney transplant. I haven't had any topical skin cancers. Last year during my annual checkup, they found a spot on my liver that ended up being a hepatocellular carcinoma. I had it removed with radiofrequency microwave ablation last March. Since then there has been no recurrence of the spot. I was rechecked every three months over the course of almost nine months and am now moving out to six months for my next recheck. You can ask me any questions and I will do my best to answer them.

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@rosemarya

I am curious. I am a transplant patient, also. 9 years ago I received a liver and a kidney. A few years back, a kidney stone was found on a scan and i was directed to drink 3 liter a day. It is not an easy task for me on many days, but I keep a pitcher of water on my kitchen counter, and work all day long to get it down. How do you manage to consume 4-5 liters of water daily? It sounds like a lot. Did your transplant team tell you to drink that much? Thanks.

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You are absolutely right that 4-5 liters of water/day is a lot, and it's really hard to do. Based on an idea from my brother, I get a head start first thing in the morning. I drink a liter in the AM before/during meds (7AM). I then eat (includes .3 liter protein shake), exercise and drink another .5 liter. So by the time lunch rolls around, I'm nearly half of the way home. And then from lunch through dinner, I drink at least another .5 liter. Throughout the day, I sip 1.5-2 liters of homemade lemonade (water, pure lemon juice, stevia). I do my best to slow way down on the fluid intake by 8PM, as I'm not a big fan of a bunch of middle-of-the-night nature calls.

It all sounds pretty straight forward, except is doesn't include that one little life necessity called work. I have not gone back to work yet, but will be doing so shortly. That's when I'm sure I'll be fully challenged to keep it up.

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@mickj

You are absolutely right that 4-5 liters of water/day is a lot, and it's really hard to do. Based on an idea from my brother, I get a head start first thing in the morning. I drink a liter in the AM before/during meds (7AM). I then eat (includes .3 liter protein shake), exercise and drink another .5 liter. So by the time lunch rolls around, I'm nearly half of the way home. And then from lunch through dinner, I drink at least another .5 liter. Throughout the day, I sip 1.5-2 liters of homemade lemonade (water, pure lemon juice, stevia). I do my best to slow way down on the fluid intake by 8PM, as I'm not a big fan of a bunch of middle-of-the-night nature calls.

It all sounds pretty straight forward, except is doesn't include that one little life necessity called work. I have not gone back to work yet, but will be doing so shortly. That's when I'm sure I'll be fully challenged to keep it up.

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@mickj I think you mentioned that your transplant had not mentioned water intake. What made you realize that you needed to drink so much? It is a lot, I think I'm doing well to get my recommended 80 ounces in a day.
JK

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@contentandwell

@mickj I think you mentioned that your transplant had not mentioned water intake. What made you realize that you needed to drink so much? It is a lot, I think I'm doing well to get my recommended 80 ounces in a day.
JK

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@contentandwell That's a good question. Prior to transplant, I was on a fluid restriction to some extent. So after transplant, I asked my team if those rules still applied. They said absolutely no. Based on that, and the fact that all doctors will tell you to drink a minimum of 2 liters per day, I thought more would be better. And I've not read anything to tell me differently. So I thought why not double that number. My nephrologist was on board with it as well.

I do the same thing with exercise. It's recommended to exercise 150 minutes/week, so I figured I would double that as well. And everything I've read, provided I'm healthy enough to do it, it will do nothing but help me. I take the same approach with nutrition.

I don't have an easy time with this. But at the end of the day, I've gone through too much, put my family through too much, to not give my body the best chance I can do be healthy, controlling the things I can control. There's no doubt that at some point in the future, I'll get sick or have rejection, but it won't have anything to do with how I treat my body.

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@mickj

@contentandwell That's a good question. Prior to transplant, I was on a fluid restriction to some extent. So after transplant, I asked my team if those rules still applied. They said absolutely no. Based on that, and the fact that all doctors will tell you to drink a minimum of 2 liters per day, I thought more would be better. And I've not read anything to tell me differently. So I thought why not double that number. My nephrologist was on board with it as well.

I do the same thing with exercise. It's recommended to exercise 150 minutes/week, so I figured I would double that as well. And everything I've read, provided I'm healthy enough to do it, it will do nothing but help me. I take the same approach with nutrition.

I don't have an easy time with this. But at the end of the day, I've gone through too much, put my family through too much, to not give my body the best chance I can do be healthy, controlling the things I can control. There's no doubt that at some point in the future, I'll get sick or have rejection, but it won't have anything to do with how I treat my body.

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I was told to drink three liters a day and that other clear decaffinated liquids, without sugar count too. After transplant my kids were pushing me to drink more water and I gained 18 lbs in water weight. Then the nephrologist told me to only drink when I was thirsty. I was given a diuretic, and my weight and swelling went down. Now I’m on three liters a day plus tea.

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Hello everyone. I had posted here earlier and thanks for all your replies. They were very helpful. Since finding this group, I also was able to find a very good support group in Facebook. I am happy to say that my anxiety is much better than how it was few weeks ago. I sleep better and haven't cried at all in the last few days, LOL. My Kidney transplant surgery is on December 20. I still few household chores to finish before the surgery but I am starting to get tired. I am allowing myself to indulge in afternoon naps and allowing myself to not to anything if I am not in a mood to do them. My husband is my donor and now my occasional worry is that the surgery should not get postponed due to us catching flu or anything like that. But we cannot control that and I am trying not to think about it, See how far I have come 😉 Hahahaha. Anyways, last night I had a dream where I had the surgery and I felt fantastic and the pain was not that bad at all. Hopefully the dream comes true. There is no point to this post but I felt like writing this out to keep you all posted. Thanks and you have a nice day.

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@rosemarya I am amazed at how awesome you are that you remember everyone so well and truly connect with them. What a kind person you are!

I have not started packing yet. I plan to do that the weekend of December 15 as we would leave home on December 18. We did buy loose fitting sweat pants and shirts, comfortable slip on shoes, pillow. So it is just a matter of putting them in a bag. I am planning to pack my make up kit, personal hygiene items, chapstick, socks. My husband gifted me a new laptop and a wireless headset that I need to pack too. I don't mean to sound braggy but little things make me happy. Someone at my workplace told me to enjoy the 8 weeks off of work and I said I will! I am hoping that everything goes well. Let us see.

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