Kidney Update- Successful Transplant! May 23

[Kraken]

So glad to hear it. She will feel better than she has in years when she's fully recovered and the new organ is fully up to speed.

[Holman]

Such great news!

[mori]

[Enough]

So glad to hear that everything is going well!

Sent from my Pixel 2 XL using Tapatalk

[EvilHomer3k]

Excellent news. So glad it has gone well thus far for both the donor and MHS. I hope she does well at home as well (and doesn't overdo it too much).

[Suitably Ironic Moniker]

Awesome, way to go!

[Zenn7]

Woot! Congrats, keep up the good, healthy progress!

[MHS]

Well, I’m finally home...sort of! After 3 nights in the hospital and 6 nights at the hotel across from the hospital (due to every other day trips back for labs and clinicals), I am back in Longmont and on our deck...because we are locked out! Neal has my keys because he brought my car back and he’s at work. So my mom and I are hanging out on the deck.

I feel pretty decent overall. It is obvious to me that there is something new stuffed in my stomach and that muscles and nerves were cut through to get it there but I wouldn’t say I’m in any pain...some discomfort. No stamina or endurance for long walks or even standing for long periods of time but that will come. The doctors are very happy with my progress and plan to drop me from 3 visits per week to 2 next week and then once a week until the end of the month when I’ll get the staples out and the uretel stent removed (and let’s not talk about how much I’m looking forward to THAT procedure.)

My donor flew home Tuesday night and is doing well also. She has struggled a bit more with pain despite her surgery not going through nerves or muscles since it was done laparoscopically. I can only assume it’s because she has been extremely healthy all of her life and hasn’t dealt with pain management as part of her regular routine.

Thanks for all the good thoughts!

[Daehawk]

Great to hear!

And stents..ya had a stent...not fun at all. Removal was even more not fun.

[Holman]

[Ralph-Wiggum]

Great news! Have the super powers manifested yet?

[MHS]

So far my superpower appears to be bruising easily. I have black eyes from my eyes being taped shut during surgery, a truly heinous bruise on my forearm where they blew the vein trying to get in the IV, lots of bruises in my arms from blood work, and some technicolor progress at my incision and drain sites. I don’t mind because it makes it obvious something has happened to me, which makes me feel better about walking so slowly around people who might otherwise just think I’m really out of shape.

[Kraken]

They can remove a kidney laparascopically?

[MHS]

They can remove a kidney laparascopically?

Apparently. I think it was actually technically a keyhole surgery...3 small incisions at/above the naval and one slightly larger one above the groin.

They lied to me though...they said they’d make a 4 inch incision to pop it in me and it’s more like 7-8 inches, going from my right side at an angle ending at the pubic mound. Maybe it could have been 4 inches on someone skinny.

[Daehawk]

Maybe theres more in there than 1 kidney. Doc could be hiding stuff from the IRS in there.

[Holman]

So far my superpower appears to be bruising easily. I have black eyes from my eyes being taped shut during surgery, a truly heinous bruise on my forearm where they blew the vein trying to get in the IV, lots of bruises in my arms from blood work, and some technicolor progress at my incision and drain sites. I don’t mind because it makes it obvious something has happened to me, which makes me feel better about walking so slowly around people who might otherwise just think I’m really out of shape.

During my wife's C-section (where I was present), I heard the doctor remark to his colleague that the patient had "thin skin."

I have never let the missus live this down.

[MHS]

So far my superpower appears to be bruising easily.

During my wife's C-section (where I was present), I heard the doctor remark to his colleague that the patient had "thin skin."

I have never let the missus live this down.

Probably a good thing if you don’t bruise easily then.

Mine is because I’m still anemic from the kidney failure that got me here...but my counts are going up!

[Zaxxon]

So far my superpower appears to be bruising easily. I have black eyes from my eyes being taped shut during surgery, a truly heinous bruise on my forearm where they blew the vein trying to get in the IV, lots of bruises in my arms from blood work, and some technicolor progress at my incision and drain sites. I don’t mind because it makes it obvious something has happened to me, which makes me feel better about walking so slowly around people who might otherwise just think I’m really out of shape.

During my wife's C-section (where I was present), I heard the doctor remark to his colleague that the patient had "thin skin."

I have never let the missus live this down.

Boy, I'd be careful referring to anyone who just incubated a human for 9 months as thin-skinned.

[MHS]

Yesterday was 3 weeks post-transplant. I'm doing really well. They've adjusted my meds from a high of 24 pills per day to now I'm at 14 per day. That will drop a bit more in a couple of weeks when they remove the ureter stent. I got the staples out yesterday and the incision is healing really well.

A lot of people have talked about how much better I would feel after transplant. My expectations weren't really that I would feel a lot better, I just mainly was looking forward to not dying of kidney failure. But I do feel better in many ways, although still dealing with issues from the surgery and drugs. The main things that are better are:

-I wake up every morning between 5-6 am and am awake. I don't sleep 12-14 hours a night and still take 3-4 hour naps every weekend day like I did pre-transplant. I sleep 8-9 hours and almost never nap and if I do, it's for 30-45 minutes.
-I don't get leg cramps and restless leg syndrome anymore. I'm allowed to eat potassium and phosphates again, so no more terrible cramping!
-I feel more alert in general.
-No more nausea.

Things that haven't improved: I still have my old kidneys, so I still feel pain from them. And I don't feel super energetic but I think that's really more a function of just having had major surgery AND being on all the anti-rejection drugs. The one that causes muscle fatigue and tremors hit me pretty hard and I've been struggling a lot with how weak I feel both from that and from the fact that I've mostly been laying around doing not much of anything for 3 weeks. I have zero stamina or endurance and get wiped just going to a movie. But, that will get better over time, I just need to be patient. Whenever I overdo, I pay for it with pain and being completely wiped out the next day so I'm slowly learning my lesson.

The donor is doing well. She went back to work this week and said after 3 hours at work, she needed a nap. Before going back to work, she was sleeping in every day and napping every day; dealing with the drop in kidney function really made her exhausted. She's running at about 75% function now but was at the equivalent of 113% pre-transplant, so dealing with that kind of drop overnight is huge. I had many years to gradually get used to the declining percentages (ending at around 14% function), and now I'm running in the mid-60's, which is fantastic. They aim for anything above 50%, so the doctors are thrilled with things on my end.

Still no super powers, though. I should see someone about that.

[gilraen]

It sounds like overall good news, I'm very glad to hear that!

[Zaxxon]

Things that haven't improved: I still have my old kidneys, so I still feel pain from them.

Did I read that you could potentially have them removed in the future if the transplant itself went well? Is that a thing?

Still no super powers, though. I should see someone about that.

Definitely.

Overall, awesome news!

[MHS]

Things that haven't improved: I still have my old kidneys, so I still feel pain from them.

Did I read that you could potentially have them removed in the future if the transplant itself went well? Is that a thing?

Still no super powers, though. I should see someone about that.

Definitely.

Overall, awesome news!

It’s a possibility but I have to say, it became a lot less attractive once I had this surgery. I’d never had major surgery before and I really didn’t enjoy the experience. And this was short and easy. Taking out my kidneys would take 5 times as long and is a lot more cutting. I think I may just deal with things as-is.

A guy I follow on Facebook with this same disease had a double nephrectomy and transplant last week, he was in surgery 12.5 hours. I can’t even imagine. His kidneys were HUGE though. He lost 63 pounds overnight between the kidneys and the five gallons of fluids they took out of him. I’ll post a picture at some point, it’s stunning and makes me so thankful that mine aren’t THAT big.

[Zaxxon]

Wow. Understandable that you might opt to skip that surgery, then.

[Daehawk]

Ive been putting off surgery on my left kidney for years and it should take no longer than 2 hours.

My wife had brain surgery that took so long the doc was catheterized too. She had to lay on her back or reclined in the hospital for 30 days and was NOT allowed to sneeze under any circumstance due to cerebral fluid lose or death. They pulled out what looked like a mile of gauze packing from her nose she said. Not sure how much there really was. She is a badass in my eyes. Im the wuss.

Then when it came time for the open heart surgery in 2014 she never said a worry in the world and got it all in order and went right there and in. Me though I was a wreck. Her doc passed me and said I looked like death and that I needed a room lol.

You women are badass.

[Scuzz]

They can remove a kidney laparascopically?

That sounds amazing. Having had two laproscopic surgeries I found they were pretty easy on the body, and left little cute scars.

[MHS]

Here's the guy I was talking about in my previous post. He had his surgery last Monday. They posted when his native kidneys were removed and said they were starting the transplant next and then 0 updates...I was sure he died. The kidney removal was something like 10 hours. But then they posted the next day that the transplant was successful.

Each of his kidneys weighed about 25 pounds. Mine are about 18 and 15, respectively. I thank god my stomach doesn't look like that! My doctor said that two things help me not to look like this: strong core muscles and having a long torso.

[Smoove_B]

[MHS]

If you're bored someday, do a Google Image search on "polycystic kidney removal."

[Zaxxon]

[Smoove_B]

If you're bored someday, do a Google Image search on "polycystic kidney removal."

[Blackhawk]

I’d never had major surgery before and I really didn’t enjoy the experience.

When I had my neck dissection/tongue resection surgery a few years ago, I was shocked about how hard it hit afterwards (I think I was under for 10-12 hours.) I figured I'd be in some pain and might have trouble moving my neck around. It was three days before I could take steps longer than four inches, and probably four to six weeks before I started to feel functional again. People just don't realize how your body reacts to that kind of invasion.

In a year, all of this will just be a blur of distant memory.

[MHS]

I’d never had major surgery before and I really didn’t enjoy the experience.

When I had my neck dissection/tongue resection surgery a few years ago, I was shocked about how hard it hit afterwards (I think I was under for 10-12 hours.) I figured I'd be in some pain and might have trouble moving my neck around. It was three days before I could take steps longer than four inches, and probably four to six weeks before I started to feel functional again. People just don't realize how your body reacts to that kind of invasion.

In a year, all of this will just be a blur of distant memory.

Yours sounds a lot harder than mine. 10-12 hours is so long to be under, ugh. The doctors have told me (several times, I might not be as grateful a patient as they’re used to) that recovery takes twice as long as normal due to all the anti-rejection drugs that mess with everything. But really, I’m doing great and I recognize that. I’m driving, I walked 5000 steps today, I’m ahead of schedule on every milestone they’ve given me. I just want to hit the fast forward button and see what it feels like to be healthy AND not be in recovery.

[Scuzz]

It does sound like you are doing great.

[Drazzil]

I'm pulling for you MHS!

MHS! MHS! MHS!

[Holman]

If you're bored someday, do a Google Image search on "polycystic kidney removal."

I did it. Don't do it.

Spoiler:

What, are you hoping for a gross picture?

DON'T DO IT.

[The Meal]

Happy 3-kidney anniversary, MHS!

[MHS]

One year later!

Things are good. I spent a long stretch between November and March being constantly sick with one thing or another (lots of UTI's, eye infections, MRSA, antibiotic-resistant kidney infection, appendicitis and subsequent appendectomy) so they decreased my anti-rejection meds a little to increase my immune system's capabilities a bit. It will mean I'll have to be monitored more closely to make sure my immune system isn't damaging the kidney, but I've been healthier since then. My kidney function generally measures between 65-80% compared to the single-digit function I was down to pre-surgery. My donor is doing great, she says she has no noticeable changes and she's considering donating part of her liver to someone as an altruistic donor (meaning you don't know the person it goes to.) She was featured on Humans of New York on Facebook:

Thank you for all the love and support, I'm so glad to be here celebrating a year later.

[GreenGoo]

[AWS260]

It's great to hear that things are going well! Your donor sounds amazing.

[Smoove_B]

Single digits went up to 65%+? That sounds incredible - are those typical results? Regardless, happy Nephronversary! (a term I just made up - doesn't even exist on the Internet!)