14 years out from Transplant

[Tashikat]

Hi …I am new to this site. I am a kidney recipient of 14 years. Have had various problems over the years …& have learned a lot. Happy to share info if needed. Overall I’ve found that eating a healthy no processed sugar diet (rare indulgences)…lots of greens, no dairy & consitant exercise are critical to staying healthy. Weight bearing exercise makes a huge difference as well. So grateful for my donor.

[AndrewT]

Dear Tashikat,

First of all CONGRATULATIONS, on the Anniversary of your Transplant! I'm almost Ten Years, July 2013 and a similar age to you (61) as well.

I'm sorry, to hear, that you had CMV..... Can I ask How It Affected You please? I have Looked it up, in the literature (and on Google🙄) but ALL the info. seems Rather Vague. Possible 'Tiredness, Aches/ Pains, General Malaise, Actual Sickness/ Nausea, Generally Out Of Sorts' and so on. CMV appears to be, in the same General Reference, as Herpes- though it is NOT (generally speaking) Sexually Transmitted. It is Apparently, fairly often, passed from Mother, To Baby, during Delivery- where it can, but often doesn't, cause subsequent 'Problems'. (That 'pretty much' Concludes ALL I can, readily/ easily Find about CMB.) Anyway I Hope, and Pray, that you remain 'Well' now Tashikat.

Enjoy your Anniversary, one of Many More- I hope.

AndrewT

[Hidden in reply to AndrewT]

Hi Andrew. I just got over CMV and I am on an anti-CMV med prophylactically at present. My major symptoms were nausea, vomiting (1-2 times a week), weight loss, and increasing lethargy.

[meggy619]

Congratulations . I agree with you that diet is the key, everything in fact, I am 5 years post transplant, I avoided post op diabetes, by taking all added sugar out of my diet, I also found I had become lactose intolerant after the transplant, this was causing muscle and back pains, in fact I ended up with a walking stick, almost not being able to walk, within 36hrs of avoiding lactose I was pain free and normal again, and have been for 4 years, I have written about my experience before, I hope this helps others to have a better life after their transplant.

[Porter20 in reply to meggy619]

I had a transplant 12/14/21. I do have dairy because I am low carb to keep diabetes at bay. I too have back pain. I will go dairy free and see if it helps.

Thanks so much!

[meggy619 in reply to Porter20]

Your Welcome!

[Tashikat in reply to meggy619]

thanx for that input. That’s of your back pain recently… and my legs are getting weaker. I will completely stop the dairy and see my results. Thanks again!

[meggy619 in reply to Tashikat]

I am pleased my input on lactose has been useful, I found that dishes with raw milk or crème are the worst, some foods like butter and cheese are OK in moderation, as most of the lactose is in the whey, which gets separated, some ice cream is made from powdered milk and vegetable fats, I started off by excluding lactose completely, and then experimented by including foods with minimal amounts, if this method works for you, you will soon know what you can and cannot eat, for instance I used to make oats with milk, which was the biggest problem for me, now I make it with water and a splash of milk.

[Darlenia in reply to Tashikat]

Simply be mindful of your labs, etc. And pass your intentions through your doctor. Interestingly, my mom endured WWII and often referred to a child who lost her ability to walk - because of the lack of access to nutrients in milk and similar products. So make sure to replace those essential nutrients in some manner, keeping them in normal range. Please don't forget that immunosuppressants are also hard on one's bone structure too.

[Ziggydoodah]

I'm waiting to get on the transplant list. Fingers crossed I should hear in the next couple of weeks. Its always great to hear people experiences at each stage of their kidney journeys. Thanks for popping in and offering your knowledge and experiences. I really feel diet has a huge impact on our health and its really interesting to hear about transplant recipients and the food they are eating. It would be great if more people contributed with what they eat now and other food groups that have caused issues. Wishing you all the best x

[CKD2-4]

Hi. First let me say congratulations on receiving your life saving miracle! 14 years is great! I have been on the transplant waiting list for over two years but like you found out that diet and exercise really help! Two years ago my Dr told me I was close to needing dialysis however by changing my diet to mostly plant based and daily walks between 8-10 miles I have been able to stay off dialysis. My goal is to not have dialysis. Congratulations and praying for many more healthy years for you!

[bakermaker222]

Welcome and Congradulations

[Hidden]

Congratulations on having your transplant for 14 years! I would love to know about your journey with regard to immunosuppression. Was your kidney from a live donor? I agree with your post. We have to eat well and really consciously take care of ourselves. I wish you continued good health!!! All the best. 🥳

[Tashikat in reply to Hidden]

Yes my kidney was from a live donor… A girlfriend of mine. Truly amazing gift! I am currently on Imuron, prednisone, 5 mg and Aezethyaprene. I was on Myfortic my first 2 1/2 years instead of Imuron, but I got CMV real bad and the cause in part was that I was quite possibly over medicated on too much Myfortic. It was quite scary. My viral counts were 185,000, and I was in the hospital for 4 1/2 weeks on ‘Ganciclovir’’ injections twice a day. (2011) I almost didn’t make it then I got a blood clot. I also got Thyroid cancer in 2016 and had half of my thyroid removed then. It’s definitely been a long haul.

[Hidden in reply to Tashikat]

Wow, Tashikat, you've been through a lot. I applaud your tenacity! And, I applaud your friend. The anti rejection drugs are powerful. I am glad you pulled through your ordeals. Thanks so much for sharing!!!

[WYOAnne NKF Ambassador]

Welcome to this site. I am 23 1/2 years post transplant. I never had a rejection episode but have had multiple other issues. I try to give back and help others on their kidney journey. Please let us know if you are having a problem or a question.

Best advice from me...always check any issue you are having with your nephrologist. Don't take anything, even OTC meds without talking with your doctor first.

Best of luck! We are here for you.

[ru7318]

thanks for the input, how is your incision do you get any pain in the area?

[Tashikat in reply to ru7318]

I had a lot of scar tissue on my incision and a lot of itching and achy pain. I had some injections done about two years after transplant and it helped to reset the nerves and way lessened the pain.

[PostivelyJo]

your post is really interesting . I’m realising more and more hiw diet plays a key part in our health. I’ve started weight lifting it’s transformed my body and outlook on life.

I have so often felt that symptoms were something i had to accept because of the chemical cage we are in but it’s not the case. There is so much we can do to find time our health.

Thank you for your post and keep going

Jo

[March-31-09]

Congratulations to you & what a blessing for both of us - I’m 14 years out as well. I’m not as diligent as you about watching my diet. Continued good health & happy Spring