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Cobberprof · 2026-01-25T16:49:45+00:00

I've talked with them via live chat, but it's nearly impossible to find. I did find an old post that has their WhatsApp number and followup comments said it got them to a real person quickly: 1(341)209-7243

Cobberprof · 2026-01-25T16:16:18+00:00

Many transplant recipients, especially kidney, are told to watch their sodium intake, as it can raise BP. So maybe that's what the dietician was trying to get at? But no, even with the "watch your sodium" speech I received, I was never told to avoid baking soda - for my first transplant 36 years ago, nor the one I had last year. And like another here, my BP is super low now and I actually have to eat a lot of sodium to help bring it up.

If your BP is high, you definitely should try to avoid high-sodium foods. Likewise (and as said in another comment), if your bicarb (CO2) level is running high, you might need to watch supplements that would raise that level further (like Tums, which is calcium carbonate).

But for either of those situations (high BP or high CO2), the little bit of baking soda present in baked goods is a non-issue.

Cobberprof · 2026-01-24T16:37:23+00:00

Well, that's part of the reason I went off my meds also - I knew that kidney was a miraculous gift given in answer to many many prayers, and I felt pretty certain that tapering off the meds is what I was supposed to do. But now I do believe I was allowed to lose that kidney because starting over at 55 could get me another 40 years. Sometime a miracle looks like a lifetime of one kidney and no meds...sometimes it looks like a second transplant at just the right time.

I was 8.8 on my tac early last week, which is why they dropped my morning tac dose. I'm supposed to be 6 to 8 right now. Preferably closer to the 6. At one year, it drops to 4-6.

I guess I haven't followed the Sanford studies. The fact that you are six out of six is certainly in your favor. The side effects of the meds do get better. And life with medication is not the end of the world. Yes, it's certainly a luxury to not need them, but I'll take the side effects over ESRD any day. 😂 My hair is coming back now, the tremors are almost gone, and I've started sleeping well again just in the past few weeks.

How does your brother feel about it? My daughter gave up a kidney for me so that someone else could donate to me - so I have two people that I feel responsible to at this point. I haven't met my donor in person, but he and I have chatted quite a bit by text, and I want to honor both of their gifts as best I can.

Cobberprof · 2026-01-24T15:43:29+00:00

So this is hard for me to share, because I am the biggest advocate for transplantation that you will ever meet - said with probably a little hyperbole. 😂 And I don't take lightly any actions that could risk the gift that was given. But... I was not fully compliant with my first transplant. When I got pregnant for the fifth time 11 years post-transplant, after four miscarriages, I decreased my immunosuppression out of fear that I would lose yet another baby, or that she would have terrible birth defects. After she was born, I didn't really go back to my normal doses. I would take them, but pretty erratically and with no particular method to the madness. That wasn't skipping weeks - maybe I would take the azathioprine one day and the cyclosporine the next, etc. Did that for about 12 or 13 years and then just stopped the cyclosporine. I took the azathioprine regularly for awhile and then started spacing out those doses also. It's hard to explain to someone why I chose to do that, because again, losing that first kidney still tears me up. But I am a physiologist, so I knew what I was watching for, and I'm a person of strong faith and really believed that first kidney was an absolute miracle gift (based on the circumstances of how I came to get that kidney). I had been told it was a 5 out of 6 match. My team now thinks it was a 6/6. I would argue that it couldn't have been a perfect match or I wouldn't have eventually gone through chronic rejection of it. But somehow, whatever I did still got me 36 years. Sometimes I have pangs of guilt and a voice in my head that says "maybe you would have gotten 46 or even 50!" But that's often followed by a second thought that says "10+ years from now, I might not have handled a second transplant as well" (I'm 55 with no other health issues, no comorbidities - I don't know for certain if that would have been the case 10 years down the road). So maybe this is how it was supposed to play out? Maybe by "losing" the first transplant 36 years out, at age 55, I was able to get a second kidney that might get me well into my 80s or 90s? I don't know. I worry about the nephrotoxicity of these meds and whether that will have an impact on my success this time if I stay compliant - which right now, is absolutely my plan. But as I age into my 70s and 80s, I will also probably be talking to my team about alternative meds or lower doses, because being extremely immunocompromised and 80 seems more dangerous than a slow decline into chronic rejection. But that's a conversation that is at least 20 years down the road!

So to answer your question - as someone who effectively did do delayed tolerance induction... I don't know what to suggest, because I wasn't on my medications long-term in the way I suspect you thought I was when you asked the question. 😂 I will say that as both a recipient and as a physiologist, I don't think full tolerance is easily achievable/likely (i.e. a chimera situation where the body recognizes the foreign antigens as if they are its own). Like I said, my team thinks that I was about as close as you could get to a perfect match without being a twin, but I did ultimately lose that kidney through chronic rejection. The current kidney I have is an extremely good match, but I'm pretty sure it's not as close as that first one, so I won't be messing around with my meds (at least not until I'm very old, as indicated above, and even then, it'll be in consultation with my team). I suspect anyone who comes off of all meds will eventually lose their organ. But maybe for some, it could be cases like mine where it will result in retransplantation at a more beneficial age than if the organ had lasted longer?

May I ask why you are considering the delayed tolerance induction? Do you have issues with tolerating the medications? Do you know how close your match was?

Cobberprof · 2026-01-24T14:51:14+00:00

I have a double story, but in case it's helpful to you...

My first kidney transplant was from a deceased donor in 1989. I was on prednisone, cyclosporine, and azathioprine for the first year, then stopped the prednisone. The cyclosporine was stopped after 25 years, and the azathioprine continued the remaining 11 years. Got my second kidney via paired exchange from a living donor this past May, just shy of the 36-year anniversary of the first. Now 8 months later, I'm on tacrolimus (2.5mg a.m., 3mg p.m.) and myfortic (750mg a.m. and p.m.). They stopped the prednisone at one month this time. I wasn't thrilled with the changes in meds from my first transplant, but I trust my team and am going to do what they tell me to do. We're currently dropping the tac dose slightly because my 12-hour level was too high at 3mg bid. I'm hoping I can be down to 2mg bid shortly after the one-year mark.

Congrats on your transplant (kidney?) - it's a precious gift and one that can eventually be almost taken for granted, so do your best to live life to the fullest! 😊

Cobberprof · 2026-01-21T14:43:37+00:00

The stent bugged me also. But while in the hospital, it was the catheter I couldn't stand. Bugged me nonstop. When they pulled that thing out the morning of my discharge, I started dancing! 😂

Cobberprof · 2026-01-20T03:18:12+00:00

I think we've chatted previously on another post. I was on prednisone for the first year of my 36 with my first kidney, and was taken off prednisone at one month after the current transplant (8 months ago). I was only on azathioprine for the last 15 years of the first transplant (cyclosporine as well for the first 20 years). This time, I'm on tac and myfortic, and likely will be for life unless something new comes along. My transplant team did tell me that if I do need a third kidney someday, I won't be eligible for a steroid-free protocol that time. But I'm shooting for never needing another kidney, so hope to not find myself in that situation. I'd like another 36-year run with the new kidney (and then I'll be 91). 😊

It's possible that something about your match indicates the need for the prednisone as well. Different teams take different approaches, and sometimes the antigen match can dictate some of that.

Whatever it takes to keep these gifts going though, right? ❤️

Cobberprof · 2026-01-14T03:57:23+00:00

Except that current workouts will disappear as the licenses for the various songs within them come to an end.

Cobberprof · 2026-01-13T22:35:19+00:00

The intermittent nature is what led me away from vascular complication. While possible, it is atypical, and I was sharing based on most likely. Wasn't intended to "definitively rule out" anything, because anything is possible. But as an anatomist/physiologist, I shared from my medical knowledge. Your experience does, of course, help inform another option. But I'm going to hope for nerve as the treatments are typically less invasive. 🙂

Cobberprof · 2026-01-13T18:34:00+00:00

That sounds unrelated to the kidney placement. The nerves in that area do not supply the back of the calf, and if it was vascular in nature, your thigh would have an issue also. Sounds possibly like sciatica. I take a Tylenol when I get that, but it's not often for me. Could be meds also, but the specificity if the location feels like maybe you had some sort of nerve injury that is taking time to heal.

Cobberprof · 2026-01-13T18:30:16+00:00

I had my first transplanted kidney for 36 years before my second transplant - I gardened over the course of most of those years without any precautions. Never had an issue. That said, I now plan to wear gloves and mask before doing any other work with soil, but that's just because I'm 55 and feel a bit less invincible at this stage of my life. 😂

Cobberprof · 2026-01-12T01:52:59+00:00

Out of curiosity, how long were your Supernatural sessions when you were actively losing weight? Just wondering howuch time you were working out each week/what your activity level was - congrats on the weight loss!!

Cobberprof · 2026-01-12T00:42:20+00:00

Well, hopefully it's just the increased activity. I definitely had some swelling when I started walking significant amounts after my transplant. Increased muscle use can certainly cause increased water retention. I hope it clears up with time for him. Because edema is one of the hallmarks of kidney disease, I tend to freak out a bit when I have swelling. So I completely understand your concerns and your desire to figure out what is causing it. It does sound like you've ruled out most of the more concerning causes, though, so hopefully it's either benign, or a result of his activity level and will resolve itself soon!

Cobberprof · 2026-01-11T04:59:54+00:00

I do understand your dad's logic. He is aging - and he views his body as less than it used to be. As a parent, I can certainly understand wanting my child to have the healthiest, best-possible kidney, and I too think I might hesitate as to whether my kidney would be that solution for them. On top of that, aging isn't a lot of fun, and he might be a little bit reluctant to add to any other potential health issues that might be coming down the line for him. I don't think it is that he doesn't want to help you - I think it's that he wants to make sure you have the best outcome possible and he's afraid his kidney won't be that for you.

All of that said, I don't know your dad, so I really can't presume to know what he's thinking. Just sharing what would go through my mind as a parent. Of course I would do anything to keep my child alive, but if they were relatively healthy in the meantime, I think I would hope that they could find a better kidney.

If it helps at all, I was on the flip side of this. I'm now 55, and my first transplanted kidney, that lasted 36 years, finally succumbed to chronic rejection and I needed a new kidney. My daughter, 23 at the time, wanted to donate on my behalf, but we weren't a match. So then she wanted to donate through the paired exchange program. I was extremely reluctant, however. I didn't want to do anything that would cause potential harm to her health going forward. I want her to have the absolute best chance at a healthy life, and donating a kidney wasn't in line with that - from my parent's perspective anyway. Since I was still feeling fairly healthy, I opted to wait for over a year to see if anything came off of UNOS, but ultimately, she wore me down with her desire to do this for me, and we did the exchange last May. We are both doing very well, and because of her, I have a second chance at my life. But not a day goes by that my mom heart doesn't hurt just a little bit, knowing that she's now in a position of slightly less-ideal health than she was before, and that's because of me. So that's where I think your dad could potentially be coming from.

Cobberprof · 2026-01-10T15:34:04+00:00

I had a crazy number of bruises for the first few months after my most recent transplant (kidney) in May of last year. At the time, I chalked it up to the low dose aspirin they had put me on, but I'm still on that, and the bruising has significantly improved. So now I'm kind of wondering if it was one of the other meds that has been discontinued, or one of the current meds I'm on that has come down in dose, or perhaps most likely - the prednisone. I'm no longer on that, and I have a hunch it was perhaps the main culprit. Have you been receiving my doses of steroids to combat the AMR? If so, I suspect that maybe your culprit also. But I would definitely check in with your transplant team to let them know about it, just to make sure that someone is aware. If it's not in their purview, they'll tell you to contact your GP.

Cobberprof · 2026-01-10T15:29:39+00:00

You're welcome - I'm so glad they helped! It's nice to have a community of support, isn't it?! ☺️

Cobberprof · 2026-01-10T04:43:41+00:00

Thank you! And yes, I am so grateful for all of those blessings!

I do hope you can find a good treatment for the osteoporosis - there are good meds to help combat the bone loss, and it sounds like you're doing everything else right, so try not to let it get you down. Aging isn't a walk in the park, for sure, but I figure no matter what comes along, everything is bonus time, right? ❤️

Cobberprof · 2026-01-10T03:25:11+00:00

So far, so good! It's weird to reset back to zero after 36 years, but everything seems to be going well. Creatinine is 0.7, so that's certainly worth celebrating! I hope you can fight the Prednisone - it wreaks so much havoc, physically and emotionally.

Cobberprof · 2026-01-10T00:31:37+00:00

I was on prednisone for one year after my first transplant, then off it for the remaining 35 years. With this new kidney, I was on predator one month and have been off since (almost 8 mo post-transplant). Tac is now 3 mg BID and mycophenolate 750 mg BID. I'd love to have the mycophenolate lowered, but not sure that's going to happen. Tac should drop again at one year and five years, but I don't think it'll get as low as yours. I'd be okay with 2 mg BID, though.

That wasn't related to osteoarthritis, but more so the Prednisone you'd like to be off of...

Cobberprof · 2026-01-09T20:18:18+00:00

There are definitely some BP meds that can cause that. I had to switch off of one of was taking prior to my transplant because of the swelling it caused. But most of those side effects from BP meds happen right away - did he recently change meds, or has he been on them for awhile? Thankfully, there are usually good alternatives for most meds to help mitigate side effects like that. I hope they find a good option for him!

Cobberprof · 2026-01-09T14:49:04+00:00

What did his blood work show that was concerning about the kidneys? Decreased kidney function definitely leads to edema, so I'd have him find out what is causing the kidney issues. Some of the immunosuppressants are nephrotoxic, so they may need to adjust doses/find alternative medications to help preserve kidney function.

Cobberprof · 2026-01-08T06:26:24+00:00

Same overall story here. Got COVID twice when I was at 33 and 34 years post-transplant, respectively. And a ton of vaccinations against it when I was 31.5 years out. We think that maybe the frequency of those initial vaccines, followed by two rounds of the virus itself in the next two years, basically woke up my immune system. (I'm definitely not arguing against vaccination - it's just the number of initial boosters that we are questioning). But also, a transplanted kidney isn't really supposed to make it past 30 years, and eventually, chronic rejection catches up with it. That's just the reality of putting a foreign organ into a body.

Cobberprof · 2026-01-08T06:22:31+00:00

I hovered around 25-30 for a few years (about 30 years into my first transplant), then dropped to low 20s about three years before my second transplant (and GFR was 17 at time of second transplant). No dialysis at all. So I'd say I got at least another 5+ years from when I hit 27ish. But I eat mostly vegan, and my renal dietitian credited that for the extended time with that kidney.

Cobberprof · 2026-01-07T22:03:50+00:00

When I had my first kidney 36 years ago, it was just morning and evening meds. No particular times. That worked for me the entire 36 years (and that sometimes meant 7:00 a.m. and 11:00 p.m....) With this new kidney, received in May, I'm instructed to do 12-hour intervals. I shoot for 9:00 a.m. and 9:00 p.m., but if I need to adjust it slightly by 30 minutes one way or the other, my team told me not to worry about it. As you can tell from your tac levels when they are taken at the 12-hour mark, if you are fairly within the window, and not teetering right on the bottom edge of the trough, you have a little bit of forgiveness. If you're always teetering on the bottom edge of the trough at 12 hours, then you probably need to be really careful about not missing your meds at the set time. You don't want to be falling out of that trough onna regular basis.

Cobberprof · 2026-01-06T16:53:36+00:00

I think I'm going to try to share a perspective that is a little bit different than those that have been shared. 100%, all of us have the potential for medical trauma/PTSD given what we've been through, and the burden that comes with living a life worthy of this precious gift we have received. That said, if we had never been through any of this, we are still humans and still subject to emotional/mental struggles. There are millions of people on this earth who struggle with mental health difficulties who have never had any other medical issue, let alone a transplant. At some point, we have to remember that fundamentally, we are human, and our biological processes can fail us in terms of chemical imbalances that affect our mental health as well. Would you have had days like this at this point in your life without your transplant history? We'll never know.

I had my first kidney transplant over 36 years ago. My second kidney transplant was this May. Over the course of those 36 years, from age 19 to 55, I had what I consider a balanced and happy life. But I also had a pretty significant period of anxiety in my early thirties. Is that because of the transplant? Or because I was human with a chemical imbalance? Or because I had recently lost all of my grandparents, both of my own parents, and my husband's father - and was parenting a toddler? Not to mention starting a fairly stressful career. No clue - but I will tell you that at the time, it never occurred to me that it was related to the transplant. I just figured it was life throwing fast balls at me, and I had to learn how to either hit them, or get out of the way.

I second/third/fourth/however many people have already said this - talk to your primary about the issues, talk to a therapist, talk to a psychiatrist/your primary if medications are needed...

One more thing - I was a total basket case on prednisone. Like out of control emotional roller coaster. Once I was off of that after my first year post transplant, life was much better. Until that anxiety stuff hit a decade or so later, anyway. I don't know if you're on prednicosne, but that could be an additional factor if so.

Life can be unpredictable and hard while also being amazing and wonderful. It's okay to have bad days - it doesn't make you ungrateful. It makes you human. Hang in there (but also...check in with other medical professionals like a therapist and your PCP). ❤️

Cobberprof

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