Adviceif you

[horsie63]

if you were in the early steps of getting a transplant, ie just referred but not heard from yet, what advice do you wish you had? I've read people have bad outcomes and others with good outcomes. Its my desire to have a transplant before dialysis.

[gpr52]

I wish I had known how well the transplant surgery was going to make me feel. I would not have stressed so much about my life not ever getting back to normal again. God’s timing is always perfect.

[blackkat2]

You're wise to try to avoid dialysis. I wish I'd been better educated about the ongoing side effects of all the anti-rejection medications (and the medications necessary to deal with those side effects). Though they're different for everyone, I still wish I'd been counseled better about the possibilities. Also, I wish I'd been prepared to feel like a stranger in my own body after transplantation--eventually, you get used to it, but it was an epic paradigm shift and extremely disorienting and distressing in the beginning. The more you know . . .

[Eyak1971 in reply to blackkat2]

Totally agree. Thankful for transplant but medication caused multiple problems. Have more physical problems after transplant than on dialysis but everyone's story is unique.

[Hairme]

I am a great researcher since that is the background I come from. I wished I think how mentally challenging this was going to be and I would have done some homework on the subject. Don' t misunderstand this, inspite of all of the mental issues getting a transplant is well worth all of the challenges.

[PKDpostTRANSPLANT]

To be honest I think what I wish I had been mentally prepared for was not feeling much better. I heard so many stories of people who felt so much better right away I never considered the possibility that I would not be like that and it was a big discouragement when I didn't. I'm 35 and I had a preemptive transplant. I am about 4 months post and so I know there is still time and I may start feeling better. I heard it can be harder on ppl who were not on dialysis but I don't know if that's true. I feel cognitively much better, but my energy is just as bad as it always was. And the medications have been hard on me, but I have always been sensitive to medications. That being said, I'm so grateful to be here, to be able to spend time with my kids, to not have to be on dialysis while they are little. The problems feels more manageable without dialysis looming over me.

I will say I have lost SO MUCH HAIR from tacrolimus. I wish I had known so I could have started taking biotin before my transplant. I hope it grows back.

Oh one more thing. I guess everyone's transplant team may have different rules, but if you love medium rare meat, runny egg yolks, grapefruit, etc, enjoy some now before your transplant!

Hope your experience is great and you feel great after!

[Ski573 in reply to PKDpostTRANSPLANT]

I haven’t heard about the runny egg yolks… hmm…. I am 3 1/2 months post transplant and I have been eating over easy eggs for about a month or so. They are my favorite and I love to put them on so many things. I know my eggs are pasteurized so does that make a difference? I sadly have heard about the medium rare meat…..

[PKDpostTRANSPLANT in reply to Ski573]

Let me edit this....I thought pasteurized eggs were okay, but according to the USDA website all egg products in the US are pasteurized and I was still told not to eat the yolk unless cooked until no longer runny. But it's best to ask your transplant team. I have heard different places recommend different things.

[BabyTee in reply to PKDpostTRANSPLANT]

Grapefruit, blood oranges, seville oranges (orange marmalade), pomegranate, starfruit are banned, or should be for all centers, because they can affect the transplant med absorption, which can lead to overdoses of the transplant meds (they call it medication toxicity).

Fortunately, I like my steak medium, but my husband has been pitching a fit if I don't eat it medium well. He will also only let me eat scrambled eggs. 🙁

[smmahone in reply to PKDpostTRANSPLANT]

I lost so so much hair and I already had thin hair anyway. I had telogen effluvium (rapid hair loss due to the trauma to my body). I ultimately went off of Tac and went on Cyclosporine instead. This medication causes excessive facial hair; but my hair came back. Unfortunately, had another medical episode and ended up in the hospital and now have Telogen Effluvium again. I totally understand your struggle. It will come back even if you stay on the Tac; but it just won't come back as much. Prenatal vitamins, Rogaine, and biotin.....

[Ski573]

I have had a transplant before dialysis. And I’m thankful that I did. Like others have stated, I feel cognitively so much better. Prior to the transplant I always felt like my head was foggy and I was always tired. I definitely feel much better every morning and I do have more energy. But by the end of the day I am definitely wiped. It could very well be that I’m only 3 1/2 months post transplant. I would agree that you should do some research and understands as much as you can. There are different rules at different Transplant Center’s which I still am trying to figure out. It could very well be because everyone is unique some people may have pre-existing conditions. Like others said Immunosuppressant drugs do come with a lot of side effects and Can effect people differently. Good luck to you!

[LBatl]

I wish I had been made aware of the anti-rejection meds and how they affect your body. As mentioned before, everyone's different so maybe they (Transplant Team) don't know so decide not to comment. With that said, I'm very happy to be fortunate enough to get a kidney! BTW, I was told I could eat anything I want, just drink six bottles of water a day.Good luck to you!

[Gardner-NY]

Hello horsie63, I wish I had found this format to communicate with long before my spouse had his transplant Nov2018. He never was on dialysis and had PKD. HE is 3.5 yrs past the transplant and we wish we knew more about the side effects that for him have no gone away from taking the anti rejection meds with all the other meds he needs to take and ones he always took plus his once a day insulin for diabetes changed to 4 times a day. 2 different insulins. the same before meals and a different one before bed. All the meds for him has been extremely challenging due to side effects in how he feels every day. WE both question if doing this journey was worth it because he feels worse now than he did prior to transplant. Everyone is different. I find that people many years after their transplant who had superb outcome in the big picture of life in how they feel and what they do forget not everyone has this outcome. I wish you all the best.

[horsie63]

Are the meds that same for everyone, just maybe the dose? If I had a list I could research on drugs.com so I could be prepared for any side effects. I've had issues before cause I'm small and most seem formulated for adults who weigh 150lbs whole I'm a whole 92lbs.As for the meat it's been at least 3 years since I've had a steak and honestly the thought just makes me sick to my stomach. As for eggs I don't eat them often enough to care if I never had one again. At most I make hardboiled and just eat the white part. I think too since they are store bought they are "pasteurized"?

[BabyTee in reply to horsie63]

There are different meds used by different transplant centers. Like if you take tacrolimus, one of the listed side effects is hairloss. If you are allergic to tacrolimus, then the alternate drug, which I cannot remember, for women it tends to cause hair growth on the face and back. Pick your poison, I guess.

[PKDpostTRANSPLANT in reply to BabyTee]

Yep I've lost a ton of hair on Tacrolimus 😭

[Oceansideup]

I have never been on dialysis and have PKD. I got a transplant as planned when my kidneys failed and now take sirolimus daily and belatacept infusion monthly. It has been almost a year since transplant and I feel like my old self again. Good energy, no brain fog, appetite returned. No regrets. Everyone is different tho. Medications that work great with few side effects for one person may have a different outcome for someone else.

I don’t happen to have a lot of side effects, but there are precautions, like staying out of the sun, cooking food well, exercising, washing my hands more and wearing a mask when necessary to reduce my risk of infection. No matter the regimen there will always be a degree of immunosuppression to consider. Best of luck to you!

[DexterLab]

My transplant went extremely well. I have PKD, and was always run down and had serious brain fog developing. I had a living donor transplant, and 20+ years of PKD feedback was gone in 4 days. Back to normal blood pressure, bony ankles and no brain fog. Your situation will be what it will be. I have been ok with the meds. Some minor hand tremor and thinning hair. But the med levels are decreased as you get further from the surgery. Wanting to get transplanted before dialysis is a worthy goal. As my center explained it, you are healthier so you recover faster, and there are aspects of being on dialysis that can complicate the transplant. So you need to think about finding a living donor. That was the hardest part of the whole thing. Lots of prayer and I ended up asking first at my church. The pastor ended up being my matching donor and I have become something of a church project. Not the worst thing.

My transplant center recommends casting a wide net when asking for a donor. You need to be comfortable with how and where you ask. Good luck.

[horsie63]

Thanks everyone. Luckily, or not, I've had 2 C-sections so fully understand the need to walk as early as possible after surgery. Someone had mentioned putting a "note" on the back of their car and I like that idea so once I get to that point I'll be doing that. My brother has said he'd be willing but need to wait to get to the point. Even my mom said she'd but as she's 86 and not in the best of health I've declined...lol. As for hair loss my Graves Disease already did a number on my hair so I don't really care about that. Same with the tremors. I will keep a journal of any and all meds and side effects so that should help identify any thing creeping in to cause issue.Is the surgical incision on the front? Should I get some button down shirts rather than tee shirts to wear?

[Darlenia in reply to horsie63]

A kidney transplant is the easiest of all transplants for recovery according to my hubby's surgeon. If done right, it involves minimal disruption of nerves and muscles. My hubby's incision is on the lower right hand side of his abdomen. He was given pain killers, but they were minimal in strength. He was up and on his feet the next day, and was walking the hall shortly thereafter. Initially, the suppressant meds are really ramped up to squash all rejection efforts by your body. (Think of the outrage your body produces against a mere splinter in your thumb.) But those meds are quickly adjusted and scaled back to levels determined to be optimum by the compatibility of your match and the results of your labs. Most people have great outcomes with their transplants to the point that they live very normal lives - and one rarely sees them anymore on discussion boards, etc. This isn't to minimize that a transplant is a big deal, it definitely is. My hubby had lots of complications very few endure (only 2% or more); but over time they generally turn out well. Those transplant centers are staffed with physicians that are extremely skilled and knowledgeable; far more so than the average nephrologist and surgeon.