General
Update from NKF meeting: Nutrition in transplant care
I learned that there are major differences in this country how different transplant centers offer nutritional advice and services. I have been offered very minimal help although I have expressed needs truly from the moment I was identified as a candidate through surgery and now years out. Living w an organ transplant doesn’t mean you can suddenly eat everything and one of the major consequences is the risk of type 2 diabetes and cardiovascular disease. Another major issue is the side effects in the intestinal tract triggered by the drugs we take. I would love help with both scenarios to stay healthy and to keep taking my immune suppressants without feeling so bad so often (due to diarrhea etc). Perhaps there is a way to engage dieticians through this platform so we can reach out directly??
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Karin, this is such a timely topic for me as I very recently asked my transplant team for a dietitian referral (in light of my ongoing GI issues) and was told that individual is now only allowed to speak to those on dialysis and NOT post-transplant. As you noted, post-transplant diet/nutrition is critical to long-term health and I was shocked that a center as reputable as mine had such a poor policy in place. I'm curious if there is an overall lack of experts in post-tx dietary care? Perhaps we target dietitians associated with dialysis clinics and find out who they're referring patients to after tx surgery? If some dietitians retain their patients even post-tx etc.?
Transplant Patient
Such a great idea and unfortunately I think your case is more the norm vs the anomaly!
I struggle with my intestine tract so much. I'm pretty intentional with my eating, considering my history of T1D, and I have celiac sprue, but recently struggle with raw vegetables even if I have washed them myself at home, and some of my go-to snacks like nuts and popcorn can even cause major upset. After an episode of diarrhea (which can really last a couple of days) I tend to get a UTI as well. No matter how cautious I am about proper urinary tract hygiene. Of course then antibiotics mess with both urinary and GI and even occasionally can cause yeast in females. It feels like a vicious cycle that could be prevented starting in the gut.
Some days I find it harder and harder to eat and am unmotivated by it. Other days I am nauseous, bloated, or overall just "sick" and in the bathroom all day.
This was a great topic to start. I do have a dietician that has been very helpful whenever I have questions. Unfortunately for me, I gained a ton of weight post kidney/pancreas transplant. Last year I became a vegetarian and then my tx Neph asked that I occasional add meat. 🥲 I have added occasional chicken/fish.
Now you've bought this topic up, I want to reach out to my dietician for their feedback.
I've learned so much about post-tx GI issues by speaking directly with other transplantees. When I was first transplanted, I was put on Omeprazole for quite some time. Long-term considerations were really NOT addressed.
Transplant Patient
@TServold it is so true that these issues last and for me especially when I travel… my go to now is to eat very bland or even processed foods on the road to avoid surprises when I am far away from home. There must be a better way! I think the MMF is the major culprit but some of the research I saw at NKF was analyzing the effect of live probiotics under the guidance of a dietician- something I have never done but would be willing to try!
I have been struggling in this area. I have had a lot of weight gain for two separate reasons.. I am struggling to lose it. I am actually going to start Mournjaro because the excess weight has led to other complications.
@Karin , that's very interesting... I was advised by the local drugstore pharmacist (not my transplant pharmacy) that probiotics can help support and boost your immune system and I should avoided that given my intentional suppression. More info is needed! I would be interested in trying it too.
I've been advised to begin probiotics right away, as rounds of antibiotics to help lingering sinus issues resulted in Small Intestinal Bacterial Overgrowth (and months of me not knowing I had it). And of course the treatment for SIBO is...MORE antibiotics!
My renal team advised just sticking to plain Probiotics that were not manufactured with B12 or other unnecessary additives. Ultimately, we don't really want "immune support" like anyone else would haha