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Fri, Jan 17 4:27pm · Living Donor Kidney surgery next Tuesday: Any advice? in Transplants

Take post-surgery recovery super, super easy – and godspeed. You're doing a great thing, just don't push yourself too hard afterwards. And yes please reach out here if you want and/or drop me a line.

Wed, Jan 15 5:04pm · From a Living Donor: One year later, what is your life like now? in Transplants

Hello,

I recently posted a one year post-donation update* in the “Kidney transplant – The Journey from the Donor’s Side” thread and was encouraged to make this a standalone discussion. So here I am. 🙂

Mostly I was curious to see if anyone else who had donated had posted about what their lives (and bodies) are like after that donation. I.E. are there are any knock-on effects they may have noticed, or other things they’re experiencing because of their donation.

Me: I’m a kidney donor, I donated in Nov 2018, I just turned 44.
Health wise: I run, I do yoga, I talk lots of walks. I’m active.
I have a high-stress job, though, and other external (non-donation related) forces that really increased my stress and anxiety levels in 2019.

One year after my donation I basically feel I am back to normal, save for two things:

1) I get an occasional little muscular ‘pang’ from my scar tissues during yoga if I move in certain ways. So I can feel that there’s still some lingering after-effects and scarring, but these are extremely minimal these days. They were worse in early 2019 but gradually faded out.

2) My 6-month and 1-year bloodwork are both good, but I can sometimes feel that my ‘system has changed’ – for lack of a better word for it. For example I’m pretty sure my blood pressure has been affected – I can feel a slight change in now when I’m super anxious and/or stressed out. I can get lightheaded, I can feel my ears ring, I can just feel that something’s ‘off’ – etc. So I’m pretty sure that’s basically some hypertension/blood pressure saying hello.

Also: I’m acknowledge that I didn’t live as healthily as I possibly could have in 2019, which probably contributed to this. There were certainly some adverse health choices I made that I know weren’t the greatest in the world. But I’m way more conscious of this kind of thing now.

Because of that, and because of point #2 I’ve been very into doing a couple of things differently in 2019 and 2020:

a) I’m adjusting my diet. I’ve also just read a really interesting book** on food and diet that also prompted me to re-evaluate my eating habits in general, so the combination has me more conscious of my diet and how that affects the rest of my body.

b) I’m doing a lot of regular yoga. It helps my overall body ‘feeling’ in general, and it’s a stress reducer.

c) I’m being more conscious of my overall stress levels at all times

All in all I’m pretty surprised at how little of a difference I feel. I’ve been able to reconnect in person with my recipient*** since our donation – and I have zero regrets about my decision to donate. All of these things in this post are honestly very minor when I put it all in perspective. But I think it’s good to post about them anyway.

And that’s me. I’m looking forward to any other people who may want to chime in.

* Thread: “Kidney transplant – The Journey from the Donor’s Side”
https://connect.mayoclinic.org/discussion/kidney-transplant-from-the-donor-side/?pg=22#chv4-comment-stream-header

** Book: “How Not To Diet”
https://us.macmillan.com/books/9781250199225

*** Article: “College friendship leads to new kidney for Clean Elections director”
https://www.azmirror.com/2018/12/12/college-friendship-leads-to-new-kidney-for-clean-elections-director/

Wed, Jan 15 4:23pm · From the Kidney Donor's Perspective: Meet @mauraacro in About Connect: Who, What & Why

A huge thank you to @mauraacro from me as well – Maura was an excellent resource and sounding board for me when I went through the donation process. I really needed to connect with someone who had already gone through what I was contemplating, and Maura was a huge, huge, huge help to me re: putting things into perspective and answering a ton of my "what about X" questions. Thank you @mauraacro for doing this and for being super diligent and open about sharing your experiences here.

Thu, Jan 9 5:34pm · Kidney transplant - The Journey from the Donor's Side in Transplants

Hello all! I wanted to check in with this thread as it has been just over a year now since I donated. I thought a 1-year perspective may be a good post. I'm also curious if anybody else has done follow-up posts about how their lives have gone & how they are doing after donation.

As for me: A year after donating, I'm pretty much 100% back to normal. About 5 months after donation I resumed my running routine again, and I'm doing a lot more yoga these days, which has been a huge help. I get the occasional little muscular 'pang' from scar tissue during yoga if I move in certain ways, but that's about it.

2019 was a super hard year for me, for reasons unrelated to my donation, so it took a toll. I suppose it was a good stress test for my body. I try to live a healthy life still, but I can't say I did a super job of that in 2019. I can feel a slight change in now when I'm super anxious or stressed – probably just hypertension/blood pressure saying hello — but my 6month and 1 year bloodwork/checkups are both good.

(Speaking of this: Having jumped into the world of wearable fitness monitors and the like, I'm curious about getting one that monitors blood pressure. I guess the Apple Watch doesn't do blood pressure without additional gear, which is disappointing. If anybody here has recommendations please let me know.)

I was able to reconnect with my recipient friend in AZ again almost exactly 1 year after our surgeries, which was fun. He's still got some other non-kidney health stuff going on, but kidney wise he's doing great 🙂 He looks a heck of a lot better than the last time I saw him, for sure. Score one for science!

So all in all, I'm doing OK, and I'm just more conscious of my body and my health choices now.

PS my recipient friend and I got some local press coverage about our donation, complete with embarrassing photos 🙂
Link is here: https://www.azmirror.com/2018/12/12/college-friendship-leads-to-new-kidney-for-clean-elections-director/

Nov 28, 2018 · Kidney transplant - The Journey from the Donor's Side in Transplants

Hello all – I'm back.

Today is the first day I've been physically alone in weeks, so I am finally sitting down for a follow-up post to my donation on Nov 14th, 2018 at Mayo Scottsdale.

I'd like to leave my name and experiences here for anybody who may be donating – or just even considering. The most helpful thing I did during my process was talk to as many donors & recipients as I could find. So: I'm adding my name to the record here for anyone looking to do the same.

People reading this in the future: please do do not hesitate to contact me if you think there's a question I can answer that might help you out, somehow.

Picking up where I left off:

I met my partner in Phoenix several days before my donation so we could relax before things got intense. I found a Scottsdale long-term Airbnb that was ~10mins from Mayo, so we got checked in and my family arrived on the 13th. A couple of easy days playing tourist was fantastic 🙂

And then, on Nov 14th 2018 somewhere around 7am, I donated my left kidney to an old college friend.

The experience is not something I can fully describe here. There are a lot of details, lots of very specific memories I have of this time, so if anyone has specific questions (pain? pre-visit prep? nervousness? travel? costs? housing? Mayo details? etc) please reach out. It is just impossible for me to detail everything properly – but I'm happy to dig into specifics for anybody who has a question.

I remain amazed at the number of variables that lined up for this donation: my life, my friend's life, the support and work of both our families and partners, our employers and friends, support from dozens of Mayo's professionals and experts, all the preparations and plans that took place beforehand, the work of all the potential donors who came before me … just the sheer number of factors and people involved. I feel like there are several million ways this could have panned out – and we both came out on the best side of the best possible combination of all of these untold variables. That's quite something.

I remember one very specific moment, right out of surgery (which would have been right when my recipient was headed in) coming off of the anesthesia – my brain finally wandered back into the world and I finally remembered who I was, where I was, what just happened. Finally knowing that everything after *that specific point in time* was all autopilot – that there were no more unknowns. That the rest was all out of my hands. This moment is now one of my top ten life memories – just lying in a quiet bed somewhere, feeling the world coming back into focus, knowing my part was now a final, complete, and finished thing.

One night in Mayo to recuperate was enough, and then I went 'home' to my temporary spot in Scottsdale for a week of downtime. Lots of books and netflix. My pain remained about a ~2 or 3 of possible 10, which was fine. I owe an indescribable debt to my partner and my family for their help during this time. The support they gave me was amazing, and humbling. My partner in particular shouldered a huge, difficult amount of this experience – she's absolutely the most stellar person I know. I overflow with gratitude for having her in my life.

Mayo warned me about the up-and-down nature of the recovery and damn, were they right: One day I'd feel great, the next day I'd feel like a truck hit me: fatigue, muscle soreness, lethargy. Those up and downs continue to a very lesser degree, but that first week was something.

My recipient did great. He went into this pretty rough, though, so he had a harder experience coming out. His first couple of days were rocky. His story is his own, but from my side it was good to see him finally clear some final hurdles and feel his new 'hardware' kick in and start to enjoy all the hard work we both put in. It was pretty astonishing to hear the post-transplant numbers that they shared with me. Apparently the kidney I gave him is a real go-getter 🙂 It is going to serve him super well.

Today is Nov 28th, 2018, exactly two weeks after our transplant date, and we're both doing super well. I'm finally home, in Oregon, and taking lots of time off of work. My recipient is back in AZ doing the same (he lives there) – neither one of us has obligations for weeks, so we're just regaining our strength and hanging out in our respective towns. It is a good time in both of our lives.

I want to send a huge thank you to everybody here that I spoke with over the last year, and to those who wished me well and shared their experiences with me.

I would love to pay that goodwill forward, and I hope this post helps me do exactly that for someone who may read this and want to know more.

Thank you to all,

– cleverusername
– PDX, 11am, 11/28/2018

Sep 30, 2018 · Kidney transplant - The Journey from the Donor's Side in Transplants

Hello all,

I came back for a little update.

I found this thread a few months ago while looking to speak with other folks going through a donation.

Since then I connected with @mauraacro (and I have read all of @triciaodonnell's posts) and through some lucky chance encounters, I met up with some other donors & recipients in my town. Very lucky re: how some these connections came about, very much by chance – so I'm happy to have had these chances.

I also was able to tell my family about my donation decision, in person. That was pretty interesting. It went well, they're supportive, but it was certainly difficult to explain. Fortunately I took a lot of literature with me, which helped. My workplace is also supportive, and I have a fantastic partner as well that is assisting and also very supportive. I'm very lucky in this respect.

Everything is lining up, which, as only a couple of months have gone by, is pretty exceptional. There's a lot more I could write here, but perhaps I can save that for a future post. In general, I've been very amazed at the responses I've gotten from the people I have told about this – and I'm certainly more aware of how many people out there are in need of a kidney.

So: now it's all just logistics: My last contact with Mayo was re: moving forward with the process, picking a date, etc. My recipient doesn't know yet, and I'm letting the Mayo team handle this, which is OK with me. So for now I'm in kind of a holding pattern, waiting to see what happens and how it all moves forward. It's an interesting time, to say the least.

If anyone out there is in the same situation and wants to connect, let me know. I plan on documenting my experience here much like @triciaodonnell and @mauraacro have done. Reading their experiences has helped me greatly with my own decision making and meditation on this decision, so perhaps I can help do that for someone else.

-cleverusername

Jun 22, 2018 · Kidney transplant - The Journey from the Donor's Side in Transplants

Hello all. I'm catching up on this thread as I've just been accepted as a donor (directed) and I'm trying to connect with folks who have gone through the donation process. Phoenix AZ Mayo specifically.

The Mayo staff have all been excellent during this process, however I found very little opportunity to talk with other donors (or recipients) who have already undergone their procedures. And I'd like very much to do that.

So, I'll be catching up on a lot of threads here but I'd appreciate any help from this thread re: pointing me towards someone I could talk to about their experiences. I think some direct communication would help me immensely. Thanks in advance.