On Monday morning this week I received a call saying I was third on the list to receive a deceased donor kidney. They hadn’t yet harvested the kidney and would need to test it after harvesting it, stc. But the initial data looked very good. A low risk lifestyle, etc.Tuesday morning I learned I would definitely receive the donor kidney if it was deemed viable and I was testing infection free. Very late Tuesday evening I was rolled into surgery. By 1am We’d morning I was in recovery. The kidney is already working. My creatinine has lowered from 3.4 to 2.6. Everything is going very well.I was supposed to see a surgeon Tuesday morning at 9am to do an examination for PD catheter placement. I cancelled that appointment, of course. I’m still somewhat stunned to have a donor kidney but am so thankful.
Jayhawker
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Jayhawker
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Marvelous! And congratulations! I'm always amazed and humbled how modern medicine can improve one's life. May the days ahead go smoothly for you! And please reach out if you have any questions! We're here for you.
I’m so happy to hear that you received your kidney. I know that you will honor this gift and take wonderful care of your new kidney! Thank you for updating us. Wishing you a fabulous recovery! Can’t wait to hear your updates.
Recovery is going very well thus far. My new kidney began working immediately. Since Wednesday my creatinine has improved from 3.3 to 2.2. The transplant nephrologist expects it to settle in between 1.2 and 1.3. I’ve had very little pain and am on very little pain medication at this point. My urine output has increased considerably daily. I’ve been feeling well enough to do some work from the hospital. (I do love my job.)
Anyway, I don’t know what I was expecting, but the surgery has gone very well with initial recovery going much more easily than I’d have thought. My native kidneys were still functioning at 3.3 with GFR of 15 before the surgery. I was on only two medications related to my kidneys, sodium bicarbonate and calcitriol (for a secondary hyperparathyroid condition). All the medical people working on my case make mention of those issues and that this was a pre-emptive transplant. So it seems that they may be crediting my current recovery to those issues. Regardless, I’m both very surprised and thrilled.
The deceased donor’s family is in my prayers. The donor was in their early 40s. It was an unexpected death. So for those of you who pray, please remember the donor’s family in your prayers. Two kidney transplants occurred in this hospital Tuesday evening. So this deceased donor generously gave these precious gifts to two persons in renal failure.
Kindness is rare and beautiful. This donor’s kindness and spirit are shining brightly.
Did you had another transplant before this one? or this is your first one? Do they have to give you prednison or dont need to? Thanks. I'm so happy for you!
I was in the same situation. I was walking in the valley of the shadow of death.Miraculously and just in time, I received a cadaver kidney, which saved my life.
Awesome. I have had mine for 33 years with no issues. So things are changing for the better in terms of deceased donor kidneys and the success rate and longevity. Follow the drs orders and keep yourself healthy!!!
Well, I'll be. That's pretty impressive. If I were a donor, I couldn't think of a person who I would want to have it more, knowing how well you will take care of it for years and years to come. So you have crossed a major milestone here. I look forward to reading your posts going forward on the different "stages" of transplant recovery. Sounds like you're coming out of the gate running! I'm very proud for you. Not only will you benefit from this gift, but also all your students and staff that you support in your work. Keep us posted! And enjoy this wonderful experience.
congratulations to you! Try not to get overwhelmed with you new normal, take it day by day and follow your doctor’s instructions fully. I am 4.5 years both transplant and doing great! Treat this gift with the absolute love and attention it deserves and you will do great!
so far this recovery is going really well. Very little pain. My strength is so much better than it was before the transplant. But lots to learn so I take good care of the kidney. I’m still somewhat in shock. I’m also so very, very thankful.
That's great news! Congratulations!! I'm currently on the transplant list, waiting for a second one. I received my first transplant after my mom gave me a kidney back in 2000. It lasted 22 years. Started peritoneal dialysis about 5 months ago. It's great you received a kidney before you needed to start dialysis. Good luck, I hope you heal fast and your kidney last you your lifetime.
Congratulations! I'm nine months post-transplant, also pre-emptive, but the kidney was from an anonymous live donor. Follow all instructions from your care team, and things will be fine. My creatinine has been stable at 1.2 for months. I still pray for the donor and their family for what they have done for me. Take care, and take it slow for a while.
How wonderful!! I’m ecstatic for you! Hoping for an easy recovery and many extra years from this beautiful gift. I will keep you, the donor and their family in my prayers. Have you named your kidney?
just got my new labs. Creatinine 1.82 from 3.3. This is incredible! I’m off all pain meds including Tylenol now. Getting up and down without problems. Starting to walk more—there has been some debate as to how much I should walk because of my arthritic right foot. But I’ve had several doctors encourage me to start walking back and forth in my room, which is large like a hotel suite… So, I’m going to start doing that several times today. I want to get started walking more seriously too. Afyer all, I was walking 1 mile a day at home on my ankle so I’ll be fine here using.a walker and having no more trouble with weakness and dizziness.
All in all, I’m still both in shock as well as very humbled to have received this donor kidney.
I’ve got an unrelated right foot problem that is more severe than we’d realized; we’ve been so focused on my kidneys. So they’re recommending 7-10 days of rehab at a good rehab facility to assure that my foot is taken care of. To be clear this is not related to either my type II diabetes or my CKD. I injured it stepping off a curb a little over a year ago. My old PCP just didn’t deal with it. But the team of PTs in the hospital are very concerned and have dug their heels in to get this set up for me. So, I’m thrilled to get this opportunity. This rehab clinic apparently is one of the top for foot injuries in general in the Midwest. I’ll gladly go get their help.
Anyway, I’m ready to go home from the transplant. My data is amazing! Creatinine just hit 1.3 this morning. They’re now thinking it may come in closer to 1.0. Five days ago it was 3.3
My phosphorous is low so I can eat stuff like healthy nuts again. My BUN fell into the normal range today for the first time in 9 years. The anemia is nearly resolved. My PTH is not improving as much so they may decide to remove one or more of my parathyroid glands. My glucose readings are already getting back very close to the ranges where they ran before the surgery and this with high dose steroid medication that aggressively elevates glucose in diabetics. So, I’m definitely ready to go home. They’d have sent me home today. But they had to wait for a bed at rehab instead. The bed will be available tomorrow. Frankly, they’d have dismissed me on Sunday IF they dismissed patients on the weekends which they don’t.
My strength is good but endurance is still lower than usual. That will take several weeks to get back though. But I certainly have sufficient endurance to go home.
My doctors are thrilled. Of course I am too. This has been an excellent team approach. And I’ve been able to continue working with relative ease throughout; although, I did no work Wednesday . I left surgery Wed morning and after recovery was brought to my room around 3:30am. So I slept much of the day Wednesday. That was also the day they moved me from the pain medication pump to an oral dose because I was sleeping so much I wasn’t self-administering the pain Med. That was the only day I was on the pain med though. Obviously nothing about my data suggests I need hospital care at this point. Similarly, nothing about my pain levels would suggest I need hospital care. Rehab will be very helpful but isn’t truly necessary. I just want to take advantage of this opportunity.
Hey, I totally understand getting things taken care of. Once I was on PD and had the back pain, THEN discovered while I had that fluid in me that I had a very uncomfortable feeling in my abdomen, that they diagnosed as a hernia, I jumped at the chance to go ahead and get it taken care of. I'm one week post hernia repair surgery, and should be good to go back on dialysis sometime in december. I can check both the back pain and the hernia repair off my list. So yes, when offered the opportunity, it's like the check engine light on your car, go ahead and get it diagnosed and treated! Very happy you're getting a lot of issues taken care of during this time. I can't say enough about how you've been such a trooper through this transplant thing though. NO pain medication after the first couple of days? Holy Smokes. Your made of tough stuff. I'm still a whiny baby from my 4 inch cut for the hernia repair (couldn't do the easy version since I had just had the PD catheter surgery).
So let me ask you a technical, but not technical question. With your numbers doing as well as they are doing, when they put the third kidney in (I call it a Y3K event-your their kidney), do the leave the other two fully working as well? So you're now running on 3 kidneys, not just 2??? I've always wanted to ask someone about that.
Anywho, keep up the great work, and we'll be asking you to shout out more details as your journey progresses. You can let us know the great, the good, the not so good, and the downright ornery parts of it all for those of us coming behind you. I'm glad you are in the lead.
I had another appt at the transplant center today. It went well. They’re beginning to drop back on two meds in addition to the prednisone. I’ll be at maintenance level (lowest dose) by Wednesday next week. We’ll then have a better idea what May glucose will do on a daily basis. It’s still rollicking around with the prednisone right now. The insulin helps but doesn’t fully control the situation.
My blood pressure is now elevated on its own to 110 or higher so I’m to use the BP Med only as needed if it falls below 110 or I’m experiencing dizziness. The anemia is also improving. So they may only have to administer one more EPO injection, they will see me once a week for a few more weeks and then will pull back to once every two weeks with afternoon appointments rather than these challenging 6:15am appointments. They still think I’m on track to see my creatinine settle in close to 1.0 which is incredible, Hobestly, this has been so much less problematic than I’d envisioned. I can’t get over it! Frankly, we’ve just got to get this glucose situation squared away and then everything will be in good shape.
Wow, that's really great news all the way around. I really hope this good news continues. But wow. 6:15, yep, that would definitely be a challenge! Afternoon would be much better Do they take blood samples every week currently? Just interested in what you have to physically contend with in these beginning weeks.
Yes, they take blood samples each week right now. It has to occur on the day of the appointment. I just learned that this afternoon. Anyway, I have found a person who can drop me at the transplant center at 6:45am on Wednesdays. She works close to there on Wednesdays only. I can use one of the non profit transportation groups to bring me home after the appointment. The transplant center can and has changed my lab appt from 6:15am to 6:45am. Let’s just hope they keep these appointments on Wednesdays.
Ok, this brings up a brand new topic. Does having transplant surgery prevent you from driving for a while? Just collecting info here. Details are important! Answer JUST when you feel like it.
I’m no longer driving due to a low vision impairment. But gif those still driving I believe that they aren’t allowed to drive for at least 4 weeks post transplant.
hi Jayhawker I’m so glad you’re doing so well! I’m definitely following along, hoping that I will be on your same path soon! I have a quick question, why do you still need epo injections when you now have a working kidney? What was your hemoglobin when you went into surgery versus when you came out?
my hemoglobin is lower following the surgery. But they say that is just temporary. It was 9.1 at my last appointment. My next appointment is Dec 27th so will see how it is then.
Hey Jayhawker, I'm SO excited for you! I, too, was a pre-emptive transplant, and could hardly believe it happened as fast as it did. It hasn't always been a smooth ride for me, but at three years, things are finally looking up! My creatinine finally dropped over a full point, BUN dropped significantly and eGFR more than doubled. None are in the normal range yet, but they're better than they've been in the past 13 years for which I have records! I think my improvements are due to switching to the belatacept infusions, and I'm hoping to start feeling better as well. (I've had some personal struggles to deal with that have really taken a toll on me, so I haven't noticed any real change yet.) Anyway, you're part of a select sisterhood now, and we're here to support you and cheer you on. Congratulations!
Fantastic! I'm so happy for you and sending prayers for you, your family and the donor's family. I'm 14 months post transplant and doing great, labs are all in the normal range, still awed by it all. Hugs. xox
Such wonderful news Jayhawker🙏 Being the thoughtful, careful person that you are ( based on all your posts before😊) I know you will do very, very well with your new kidney. What a blessing🧿 A very happy thanksgiving to you.
And my heartfelt prayers for your donor and his family who gave you and others a beautiful gift🙏
Thankfully my glucose is calming down! Yeah!! Also my strength is noticeably better! Yeah!! Plus Tues, Dec 27th appears to be my final early morning appointment (labs at 6am). I am shifted to afternoon appointments on Fri, Jan 6, 2023. I believe these appointments will also shift from once a week to once every two weeks at that point with labs the week in between. This will be much easier to manage with transportation.
The issue this past week was getting anti-rejection meds shifted to my health insurance required pharmacy. Frankly, that was pretty stressful. But the meds are shifted now. We shifted the other meds to my regular pharmacy Friday so all should work well now. I’ll need to remain vigilant with regard to this for the first few months though.
I continue to feel well. I’m learning to eat much more normally; more meat protein, more vegetables with no potassium issues now, snd so forth. I’m also laser focused on exercise and walking. Thankfully the ankle and knee I injured 3 days before thd transplant are much better so I’m able to walk more easily with an ankle brace. I’ll see a soecialist about the ankle in January. In the meantime I’m walking a total of 1/2 mile a day right now and doing 30 minutes (low intensity) on my recumbent elliptical machine daily. I’ve got a way to go. If I can stay on track I’ll be up to 60 minutes a day on my elliptical machine at moderate intensity by the end of January. Hard to know about walking distance until I see the specialist in January.
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Do they take blood samples every week currently? Just interested in what you have to physically contend with in these beginning weeks. 
My brother needs a kidney and advice
I got a kidney!!
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Using social to try to get donor 
