IamA 30 year old kidney transplant patient AMA!

How did you lose your original kidney?

I was diagnosed with IgA nephropathy around two years ago (I've had it much longer though). This basically means that my immunoglobulin and my kidneys don't really get along and I ended up with a lot of irreversible scarring in my kidneys.

That’s what I have too. Congrats on the new kidney! Such exciting times. I am 34 and on my second transplant, 5 years going strong for this one! Have fun with the new lease on life!

I'm definitely feeling very lucky. Even though I'm sore I still feel so much relief and freedom. Hopefully this one will keep on kicking for you. Sounds like you've got a collection started in there :)

I do! The one in my left lower abdomen is from 2010 and unfortunately the IgA nephropathy hit it immediately after transplant when I was 19 and lasted 5 years. The one of the right side is 2017 and just doing amazing! Took a long time to stop worrying about the second one, but it just keeps standing its ground

Yeah I can imagine that would be really scary worrying about the second one. I'm glad it's working out well for you. I'm sure that will continue right along that way.

Congrats on the kidney! do you have insurance besides medicare? Mine covered travel for transplants, including going for testing beforehand. I don't remember if it was medicare or my secondary, but they covered my flight/hotel/rental car/and a food allowance for me to get on a second regions list and said they would cover any travel for yearly appointments while waiting for a kidney and the costs to get there if one became available at that hospital.

I'm on Oregon health plan which is Oregon's version of Medicaid. They are reimbursing me a little bit but it won't even cover a quarter of our costs hotel wise. On the other side I haven't paid for any medication, dialysis, or the hospital stay. So I'm definitely in a better position than most.

And based on your username, I'm a little scared to have you in my thread. I promise you don't want mine.

Hello! My brother has Iga nephropathy - it seems to be well managed and caught early such that while he needs meds long term, he won’t need a transplant until it gets bad. Was yours quite progressed?

Hope you’re feeling well and sending you healing thoughts.

I'm glad to hear he is doing well. My kidneys were already almost completely scarred by the time I knew anything about it.

A lot of that had to do with me ignoring warning signs from my body and just deciding they were so to stress.

Listen to your bodies everyone!

What restrictions do you have with only one functioning kidney? I have the possibility of losing one of my kidneys from scarring on my ureter so curious what I might be looking forward to if my situation doesn’t improve.

Honestly I'm on very few restrictions as far as dieting goes. My understanding is that the good kidney that is left will grow a bit to make up for the lack of help.

They mostly just want you to eat a heart healthy diet and drink plenty of water which I'm sure they would recommend to everyone. They due recommend cutting down on protein to keep from stressing the kidney but it's not an unreasonable amount of change.

I do have a few extra restrictions due to the medication I'm on but most of that is to avoid problems with the immunosuppressants and food safety issues.

Definitely a whole different world from the restrictions on dialysis.

Best of luck to you and hoping those kidneys keep on working for you!

What were your symptoms that led to your diagnosis?

There were honestly a few that I should have paid better attention to like headaches and vomiting after big meals. I just wrote those off as stress and moved on.

The reason I finally went in was I started urinating blood. When I got to the hospital they read my blood pressure as 240/140 and immediately admitted me, worried that I would have a stroke.

Pay attention to what your bodies are telling you everyone!

congratulations OP! are you feeling any different now that you have a working kidney?

Thank you! It's hard to tell because I'm still fresh off the surgery and all sorts of meds but everyone has told me I have more color to my face and that my skin looks healthier. I definitely feel a little better every day though!

Bad kidneys are no fun, the diet takes adjusting too as I am sure you know but that's not really all that hard. Congrats, that is some scary stuff to go through, I have some issues, hopefully it does not arise to a need for a transplant, but its not outside of the realm of possibilities for me so I am extra careful with things, watch that sodium and...well everything else too. I just kept making jokes about building my own out of a LifeStraw/a pair of G.I. issue socks, a coffee filter and camelpack... in all seriousness though, best of luck to you going forward.

Thank you! Best of luck to you too. Have you been able to avoid dialysis so far? I mostly just have to drink an insane amount of water right now but I can deal with that. Luckily they are making good strides with artificial kidneys. So hopefully the process will get easier for people in the future.

yeah skirted just under needing dialysis, just trying to maintain the status quo as these things don't heal once they are damaged as you know. So sticking with my guns here on strict diet and all that. I was in the long term ICU for a while a couple of times with other folks that had to get dialysis and am really trying my best to see if I can get away with never needing a transplant, but its a tough road with a lot of unknowns. My damage came from severe dehydration for an extended period of time, so there is a chance if I am super careful I can avoid it, but once in a while my numbers go wonky for reasons I can't explain and it gives me a bit of a fright. Glad to hear you are doing well, I got a SodaStream for water, I kept blowing all my money on lacroix haha.

Well that's a blessing all of its own. Dialysis is a whole different kind of torture. Hopefully since your keeping a good eye on it you'll be able to catch any problem before things get too bad. Best of luck and good health to you!

First, Congrats on the transplant! I hope recovery is easy for you. 30 years old?! So young! I would love to know about the donation process! How long did you wait on a kidney?

Thank you! From my time of diagnosis to transplant was almost two years. However I was extremely lucky and had a matching donor. Unfortunately it can take much much longer if you have to wait for a match.

Hi, congratulations on getting your kidney. I understand how hard it is to go through the whole process. Could you describe how you coped while waiting for the donor or your name on the list to come?

Thank you! There were definitely some dark and tough times along the way. I spent a lot of time learning to be at peace with my thoughts and how to be alone with my mind. Some meditative practices helped. Antidepressants can also work wonders when used correctly.

Really after a while I learned to just focus on the light at the end of the tunnel and the fact these things wouldn't be forever.

I definitely learned a lot about myself and the things I'm capable of surviving.

Congratulations on your new kidney! I am also a kidney transplant patient at 30, though this is my second and I had my first at just 8 years old! What is your current GFR if you don't mind me asking? I hope you're recovering well

All my labs show me is estimated GFR and the only results it shows is >60 mL/min. Not much of an exact number but of course that's with a new kidney.

To answer your other question I was diagnosed in October of 2020 and got my kidney less than a week ago. I obviously has symptoms earlier and probably could of had a diagnosis earlier if I wasn't such a dingus.

Thanks for the good wishes! I hope your doing well.

What is dialysis like, how often did you have to go before you got a transplant? Do you still have one bad kidney? What happens to it now?

While not OP, I did dialysis for 3.5 years before I got my kidney transplant. For me, dialysis was THE most soul sucking, morale destroying, utter sucker punch to the face every single time I went. Most people on dialysis are older, waiting to die, at least in my center. Having to sit there, while blood is being removed from your body, cleaned and put back in for 3-4 hours, watching all of these older people waiting to die while you are hoping at a chance to live, has scarred me for life, even with my new kidney.

They leave in your "bad kidneys" and fit the new ones in. Take care of your kidneys as much as you can. Limit sodium. Watch your blood pressure. Eat right as you can, exercise.

Grats OP on your transplant! Be prepared for new smells. I hadn't realized how bad my smellovision was until after transplant! I had a very rough time with certain medications, so don't be afraid to be vocal with your team about any side affects.

That about sums up my experience with dialysis. That was the worst part of treatment for me. Watching all the people that have basically given up on life all week long was the most depressing thing I can think of.

Thank you! I have definitely noticed that my sniffer if working overtime. I can smell every single person that walks past me. Luckily I have a great team that I know would be ready to fix any issues that come up. Here's to hoping we both stay in good health!

I actually did two different types of dialysis.

Hemodialysis I went in to the clinic three times a week for 3.5 hours at a time. This experience was the worst thing I've gone through in my life. The actually treatment wasn't the end of the world. It was just sitting around for a while. The bad part came after. My body seemed to especially not like the treatment process and I would get terrible migraines that would cause me to vomit through the night.

After about a year I switched to Peritoneal Dialysis which is a completely different treatment that you can do at home during the night while you sleep. It uses a sugar water solution rather than a dialyzer. This completely changed my quality of life. It was a lot to learn and keep track of on my own but the worst I had to deal with was some bad cramps through the night.

They actually leave both of your kidneys in when you receive a transplant. The explanation was that it's not worth the risk of removing the bad ones since they are hooked up to some serious arteries.

My understanding is the other ones will finish out there life cycle until they are too far gone and just shrivel up a bit and hang out.

Thanks for your interest!

Wait so you have THREE kidneys now?? I read somewhere else on this thread, a guy was on his 2nd transplant, does that mean he has FOUR?

Lol that is exactly right. Got a little grape vine going in there.

My best friend has just received a kidney transplant. She went through hell in the recovery with several complications and poor pain management. She has finally been given the okay to go home for the rest of the recovery period. I want to send her flowers and an elaborate gift basket. What items are especially helpful for her recovery/new found abilities? I really want this gift to be USEFUL and helpful.

Sorry it took me a minute. I was trying to come up with a decent answer for this. One of the first things me and my mom wanted was extra pillows. It's quite difficult to find a comfy position to lay down in.

You have to drink a ton of water too so maybe a nice big water bottle.

The other thing I really wanted was warm yummy meals. Hospital food is horrendous, so some good food after is nice. Especially if it's easy to cook. I imagine she has a support person though.

It's also hard to get the amount of protein in that they want you to eat for healing.

Honestly most of what's she is going to be doing is paying in bed and waiting to feel better. She won't be allowed to do much but walk around a bit.

Also maybe a huge pill box if she doesn't already have one. I have like 18 pills I have to take morning and night. This is the one I have.

If I think of anything else I'll let you know. It's definitely an adjustment period. If I think of anything else I will let you know.

Hey! fellow heart transplant survivor here! I just wanna say it does get better as time moves on and you'll start doing this normally! Sending loads of love! ❤️❤️

Just a small question. Did your health insurance cover the transplant costs and the post-transplant immunosuppressants?

I'm thinking of working in Europe or Canada so knowing this would be a great help!)

Thank you! Glad to hear your doing well!

I'm currently in the US and my insurance covered my transplant and medication, as well as the costs for my donor.

This obviously could be completely different with different insurance. I know they mentioned that having good insurance would speed up the process a bit too. Best of luck out there!

I’m assuming you’re American? You don’t have to give exact figures, but I’m assuming a kidney transplant is probably > $100,000 in medical expenses… even with insurance which I’m sure covers a very small percentage, does this sound accurate??

I haven't seen a bill yet. I am in America but I'm lucky enough that Oregon health plan has covered all of my medical expenses.

Someone posted a figure on another post that said 11 months of dialysis and a living donor transplant costs roughly $750,000.

I will definitely come back and let you know if I ever see some kind of billing.

What I can tell you is I added up the costs of my medication for the first month and it came out to $3800.

Congratulations on your new kidney!

My wife and I also live in Oregon, she was diagnosed in 2014 with end stage renal failure at the age of 30. It's been a long hard road for us but we finally have a consultation with the donor team here in Portland in just a few weeks! Do you have any advice for us going into the consultation or what we can expect going forward? Thanks!

Congratulations on finally getting to this point!

I will say you're in good hands at OHSU. They have a great and very supportive team.

Make sure that she is up to date on all her vaccinations. Some of them have time restrictions before you can get the second set.

I would also make sure to be doing some light exercise for around 30 minutes a day. They do a lot of checks on your heart to be sure that it can handle the surgery.

Obviously quit smoking or any form or they will boot you off the list until you quit.

The main advice I would give though is to not panic if you don't hear from them for a while. I had my phone consultation in August of last year and didn't hear anything else until January. Hopefully things will move a little quicker now that things aren't back logged from COVID. The hard part is waiting for that initial call though. It's a lot easier to get ahold of people once you have a team assigned.

The other thing to plan for is she will need a support person that can take a month off work to help her and a secondary person on the books in case that person has to do something. I don't know if you plan on donating but if you do, you will also need two people that can give up a few weeks.

Best of luck to you both! I'm glad you guys are reaching the end of this journey. Feel free to reach out anytime with any questions you have.

Does the transplant clinic not offer discounted housing options for out of town patients?

I'm pretty sure mine did... of course, that was *very* pre-pandemic. haha

They do have options but there obviously has to be openings there and it's first.come first serve. We also have a small dog that were couldn't find anyone to take care of for a month. We're still talking to them about getting a spot there though.

Not to be a Debbie downer, but do they "wear out"?

A friend of mine got one in his early 20s and it's closing in on 2 decades. I think his kidney is about a decade older than him. I'm wondering if he'll be looking for another one. Haven't thought of a tactful way of asking and I can't seem to Google it right.

They can. I don't know how much the age of the kidney matters. It's not uncommon for the kidney to last less time than a non transplant though.

That's usually do to some form of rejection, other health issues, or recurring disease.

There's also a bit of chance to it just like anything else. I've heard of them failing within the year or lasting 30+ years.

Do you think you smoking tobacco out of a bong contributed to you losing a kidney? As someone who solely smokes out of a water pipe, except when I’m at work, it’s effects worry me and your 10 year old post lead me here. Thanks in advance mate.

Have you possibly been using that water pipe today?