setbacks after transplant

[DD2O]

Kidney transplant done in June Having setbacks with meds, infections. Any one else having problems?

Have a very low magnesium level. Mag meds causing frequent stools.

[Balap]

Magnesium Bisglycinate is gentle on the stomach

take low dose to avoid frequent/loose stools

buy powder form to take low dose or break tablet into half

[ShyeLoverDoctor]

Congratulations on having a successful transplant.

The medication dance will never stop for the rest of your life. Your body is constantly wanting to reject the kidney. It will never ever stop. The anti-rejection meds will always have unwanted side effects. It’s always going to be a delicate balancing act.

The entire first year is known for being difficult for almost everyone. I don’t think the doctors prepared us at all. They figure you’ll be so grateful to get a transpalant it won’t matter to you. Yes I was fully warned the meds increase the risk of certain cancers, that 20% of all transplant patients develop diabetes, often from steroid.

The path to recovery is not a straight line. Expect complications. Having to be re-hospitalized, especially shortly after transplant, is not rare. In my first year, I was hospitalized four times I think. I’ve honestly lost count.

Low magnesium is very common with some transplant meds. In addition to taking regular supplements, it’s a good idea to try to incorporate high magnesium foods into your diet. Nuts and seeds are both high in magnesium and make a good snack. People who are allergic to peanuts (like me) can have “sunbutter” which is made of sunflower seeds and tastes nearly identical.

Having neutropenia, a sudden dangerously low white count, fairly commonly happens, when the anti-rejection meds go too far and beat your immune system down to the ground. They make a drug which when injected will stimulate your body to make white cells.

It’s all worth it.

Your transplant hospital may or may not have a post transplant support group. Mine does and I go faithfully. It’s enormously helpful to know I am not alone. Otherwise, you might look around your state for other support groups to join.

[Winner76]

Hi,

Yes it’s tough and takes a while for your body to adjust. Since my transplant I’ve been diagnosed with diabetes, colitis and have had sepsis twice. I’m not trying to scare you but it’s not plain sailing for most patients. My one tip is drink plenty of water every day and don’t be afraid to question the doctors on everything.

It will get better for you , give it time .

[Mydaughtermyhero in reply to Winner76]

Each person’s experience is different but honestly the first several months were difficult. The medications can cause side effects that are making you feel unwell and susceptible to problems. I had several UTIs the first few months. We developed a prevention protocol that seems to be working. As the medications were reduced and then stopped I felt better and better. For me once the tacrolimus was stopped I started feeling like a new person. My anti rejection meds are now 5mg prednisone, 750 mycophenelate twice daily and a monthly infusion of Belatacept.

It’s been 13 months and I honestly feel better than I have in many years, praise God!

I pray you will be writing your encouraging story to someone else a year from now.

[Tankjsl]

Congrats on your transplant!! I am coming up on 18 months post kidney transplant. YES I have had GI side effects. I was sent to a gastroenterologist. He simply told me to take Imodium each day. I have done that now and many of the GI side effects have stopped or are very rare. They also prescribed Dicyclomine Hydrochloride 10 mg which is an IBS med. When things do get a bit bad I can take one of those and it helps a lot. It could be taken daily but I have not done that yet. They also switched me to Slow Mag which is over the counter and that switch has helped too. It is not as harsh on the GI as regular prescribed magnesium. Check with your transplant doctor what is best for you. I know I trust my medical team without reservation.

Yes the transplant was a challenge but I am ever so grateful to a living donor that gave me a kidney and I do everything I can to stay safe and follow the guide lines to stay as healthy as I can. I’m feeling awesome now. My main transplant nephrologist said you didn’t go through all of this to sit around….go enjoy life. That’s what I am trying to do and encourage you to try and do the same thing.

Best of luck!

[hope1419]

DD20, Congratulations on your new kidney!

The first year is rough. My first shock was the number of pills I had to take, but you get used to them.

I had magnesium issues, too. It is so common that the manual they gave me at my transplant center has it already in it a kong with certain magnesium rich foods you have to take.

My doctors explained that the new kidney works better and my body was not used to it any more.

I was having trouble with magnesium so.much that my only readjusting to the hospital was due to it being too low and they symptoms are similar to a stroke. Anyway among the options I got were infusions since my levels deployed so fast at first. Then, my nephrologist moved me to a different kind of magnesium to stop some GI issues. I take Magnesium- glycinate lysinate chelate 100 mg 4 pills X2/day. It is over the counter, so, out of pocket, but so much better. I still have more frequent stools than before, but at least is not diarrhea. I struggle with hair loss, as well, but I just decided that maintaining my kidney is more important than maintaining my hair.

Things get better. You get used to your new normal and you can find a balance consulting with your transplant team.

[clevebro]

Hello I would like to add my two cents. As everyone has said the first year is rough. I was hospitalized for about five days every other month since the transplant. I have had immune system issues and currently dealing with yet another bout of CMV. My glucose levels sometimes spiral out of control. I take a lot of medications, and it seems just as I pick up a refill, the medication is no longer required. My magnesium level was very low and I would have these severe muscle cramps, headaches and other stuff. Additionally, the hospital where I received my transplant was over 250 miles away from my home and they would not let me find local care. This meant that I had to drive 250 miles to the hospital every week, and 250 miles home. Still have to drive there for monthly infusions and meetings with the nephrologist. No one told me about how difficult recovery would be from this procedure. I was not fully informed of the risks beforehand. I received no manual , pamphlet or brochure

But it is still better than having to be attached to a machine to live.