I received Cindy, my deceased donor kidney (I’ve named my new kidney Cindy after a dear friend who strongly encouraged me to pursue transplant eligibility testing), on Wed, Nov 16, 2022. So, technically I’m a little more than 5 months post transplant. Regardless, I thought an update might be helpful for those of us moving through the first year post transplant.
Good news:
1. Cindy is working amazingly well! My creatinine is ranging from .86 to .91 giving me eGFR of anywhere from 67 to 72.
2. My electrolytes are within the normal range.
3. CMV and BK virus checks consistently come back with no virus present. (I was CMV free prior to the surgery. Cindy was also CMV free. So, my transplant team says I’m low risk for CMV.)
4. My blood pressure is now stable and in the range they want it without BP meds. Yeah!!
5. My glucose is in check; although, this is with insulin. A minor disappointment for me on the insulin front as I successfully controlled my type II without medication for 12+ years prior to the transplant. But I knew this might happen. Consequently, it’s been a matter of getting my brain wrapped around the situation and learning how to manage the new normal with my type II now that I’m on these anti-rejection meds. I’ve got a great endocrinologist though. He’s been extremely helpful.
6. Absolutely no intestinal tract issues with the meds. As some of you may recall, I had an episode that put me im the hospital in April of 2022. I was vomiting nonstop. That lasted for close to three days. They diagnosed me with GERD. They tossed around a few other possible diagnoses as well. I saw a GI. I had no more issues from late April on but we weren’t sure what would happen with the anti-rejection meds. So, what has happened? Absolutely nothing! No problems at all with the anti-rejection meds. In fact, if you were to spend a week with me in my home, you’d have no idea I supposedly have GERD or any other intestinal tract issue.
Challenges:
1. The anemia I experienced pre-transplant continues. They aren’t sure if it will resolve or not over time, See challenge #2 for a related issue. I’m taking SlowFE to address the anemia. It has kept my data slightly under the normal range with hemoglobin coming in around 11.5 (12.0 is the bottom of the normal range).
2. Low white blood cell count. This has been the major issue I’ve experienced. It began around day 96 post-transplant. Apparently it’s not uncommon for this to occur often surfacing around day 100 post-transplant. They’ve administered neupogen injections to elevate my WBC count. They’re also adjusting my meds to try to identify the dosing that will both protect Cindy and keep my WBC count in the low normal range. So, this is a work in progress at this point. I’m hoping they’ll get this figured out so I won’t need neupogen injections long term as those created very severe bone pain. However, I’ll certainly do what’s needed to protect Cindy.
So, all in all, my transplant journey seems to be going well. The surgery was such a good experience with virtually no pain and Cindy working immediately. Just amazing! My first 5+ months have gone well. Honestly, to run into only two issues by this point is also amazing, I’ve got a good transplant team, I’m doing my best to work with them; they need me to do my part🙂
I think it’s important for us each to remember that a transplant isn’t a cure. It’s a treatment. There are clear benefits. But we will find ourselves dealing with some side effects as well. Of course dialysis has side effects too. If I find myself dealing with bone pain long term, I’ll wrap my brain around that and do my best to manage it. At this point I’m hopeful we’ll get this figured out and I won’t need neupogen injections long term; however, regardless of that issue, I’m thrilled to have received this precious gift!
Jayhawker
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Jayhawker
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glad to hear you and Cindy are doing well . Sorry you are having bone pain😕Yeah people tell me wait until you get a transplant and you will be cure I tell them no I won’t I will still have my kidney disease and that transplant is a treatment like dialysis is a treatment for me they can’t wrap there head around that.
I have been thinking about this lately. When people see me and ask how I am doing, I struggle to find the true answer. I say, I am doing really well, which is true (8 months out), but I always feel the need to say, “of course there are side effects, my hair is falling out, I have nerve pain…” etc. I keep asking myself why I add this part. I think it is because I need people to know I am not “cured” but am managing things. I walk around with an incredible sense of gratitude every day, and at the same time I (as you all are) am managing so many things to take care of myself and the new kidney.
I have been thinking about whether it would change my mindset at all to just say “yes, everything has gone smoothly.”
I think honesty is exceptionally important. I sense many believe a transplant is a cure-all, life will be normal. Promoting that myth forces everyone to issue only platitudes and gratitude - stopping people from improving their own health, stopping research into better treatments, etc. A New York Times reporter with at least two heart transplants, now facing terminal lung cancer, recently spoke about transplant "gratitude" and how that stops needed momentum. She pointed out that immunosuppressant research has not progressed beyond the 1980s as a consequence. My hubby and I are candid with people. Education matters; it has a profound influence on direction and outcomes.
Thanks for sharing that perspective. I hadn’t thought about the big picture implications for research, etc. I have been very candid also, but had been thinking of it from a personal standpoint of working through the emotions of transplant and wanting people to understand that I will continue to have limitations. Thanks for bringing back the community level view for me.
Side note - I am happy to say that I am part of a drug study. It is a drop in the bucket compared to any major advances, but glad to help in a small way.
That's wonderful! Please continuing participating in drug studies and more. Contributing, even in the smallest of ways, can snowball into a big impact! May you have many good years ahead with your gift!
You are so right and the transplant people with their gokden ticket speel do not tell you the rest of your health suffers for it.Is it nice having not to go to dialysis,absolutely but the horrible side effects,the constant infections,hair loss,body deformation,worry about cancers,rejection of kidney,failure of new kidney, is more time consuming then before.You have a month of really good energy and health and start to forget about your worries,then bam get hit with another side effect or infection or setback and you are back at square one.I'mextremely pissed off I agreed to accept a donor kidney that was 60%funtionality instead of waiting for a better one cause if I would have known all the crap i've been thru for it since transplant I would have waited for a better functioning one.Also it had cmvwhich they didnt inform me of and though i tested negative for first 8 months came down with it bad a few months ago.I called kidney transplantnow a game of wackamole, you knock down one mole in you health and another pops up,then you wack that one down and another pops up
I understand… I wake every morning so very thankful to have Cindy. I sent a note to the deceased donor’s family. I plant to do that every year on the 1 year anniversary of the transplant surgery.
However, there are side effects associated with these meds. That’s a reality. Attitude is certainly critical. But I believe my transplant team needs not only my commitment and full effort to do my best, but also my honest appraisal of how I’m doing on a daily basis. If they were trailing me around every day, what would they see? They can’t do their best work without this sort of partnership.
So, I arrive with lists of any symptoms I’m experiencing. Which are new, when they began, etc. I also highlight those that are improving verses those that are worsening. After sharing all this, my question is always, “Is there anything we can do about any of these symptoms without endangering the health of my new kidney?” I then do what they suggest. And, if it’s something I’ll need to live with either permanently or for the short term, I go home thinking about accommodations I can make to adjust…
I guess as a special education professional it’s more or less second nature for me to shift to accommodations and modifications when there is no “cure” for the “condition.” I also set goals and work toward meeting them. Walking more weekly, doing a more intense workout on my recumbent elliptical machine each week, adding strength and flexibility exercises to my daily routine, etc. I start with what I can do and gradually move toward the goals I set.
But I have also made my mind up that I need to plan and do something for fun or pleasure on a daily basis. Plus, I’m planning a trip to visit the UK within the next 6-9 months. This is my new normal so I need to embrace it and move forward. My body will adjust to the meds..
Oh, Jayhawks, it was wonderful to hear this news. I followed your journey for awhile and so glad things are going well. Enjoy the new normal and keep us posted. Hoping and praying the bone pain dissappear soon.
First of all, and Most Importantly, GONGRATULATIONS on Your Transplant! I am a bit 'ahead', of you, on The Journey- I'm, almost exactly, a Year Post Transplant.
My experience, of The Transplant, could, very well, be a bit different to yours- I'm British , the 'other side' of The Pond to you...... 'Where Everything Is Exactly The Same BUT Completely Different- or is that- Completely Different BUT Exactly The Same?'
What I CAN 'Tell You' is that, there WILL be 'Different Drugs, and doses, Tried Out- on you- , in all probability, over the next few Months- with a View to Finding you an Effective 'Mix'.
In my case I was already Immunosuppressed, due to Vasculitis- an Autoimmune Condition- so the Transplant Medications, certainly in the Long Run, did NOT 'change' much- Basically 'swopping' Azathioprine for Tacrolimus. Once again Congratulations, on your Transplant.
I’ve had the pleasure of visiting your fine country several times🙂 I’ve also read your posts and found your outlook to be encouraging and insightful. Thanks for your response!
Appreciate your wonderful update. You are so very right - dialysis and transplant - both are treatments. While most everyone agrees that a transplant is wonderful, nothing is better than your very own well-functioning kidneys. But we're ever so grateful for the gift that my hubby received - even with the few red flags on lab reports and diabetes that came with it. We, too, greatly appreciate the life we now lead. Cheers!
Yes, this has certainly been quite the journey. I’m thrilled with Cindy. But I have a lot to learn to be sure I’m doing my best to take care of her.
I’ll finally retire in late August of 2024. The federal grant I’ve been directing ends that year. So, now I need to figure out insurance as I’ll no longer receive health insurance through my employer. I’ve got some meetings scheduled to begin figuring this out. I’ll likely post for some ideas here too.
In the meantime, I’m hoping to get involved in CKD advocacy work. I’d really like to have the opportunity to lobby politicians etc. While there have been some positive legislative bills passed related to CKD (especially related to transplants),much work has yet to be done. So, hopefully I’ll be able to get involved with legislative advocacy work after I retire.
Jayhawker
Jayhawker, congratulations on receiving your wonderfully working new friend, Cindy!!! I am a few months ahead of you, having received my transplant 8 months ago. You are right to be realistic about transplantation and, yes, receiving the gift is a true reminder that life is precious. I wish you all the best! 😊
awesome news to hear! I’m over 2 years out from mine. Just had my visit Wednesday and got an A+. He said I was his best patient!! I have joint, muscle and nerve pain which is a struggle plus weight gain from prednisone. That’s my 2 main things. The neuropathy I had with dialysis has never gone away, so that’s a constant battle. I’ve taken up more art projects and it helps to take my mind off the pain.
Thank you for the update. You have the best attitude. Your post is inspirational. I am glad everything is working out for you. I also have had a very low white blood count and neupogen helps. All the best to you as your journey continues.
Retirement can be a wonderful opportunity to pursue one's interest. CKD advocacy work would be a good choice for you! If your institution is like mine, you'll be given some choices regarding your health coverage as you exit. I took Social Security with a supplemental (Aetna) plan offered by my school system. On the other hand, my self-employed hubby took Social Security with a supplemental (United) plan that's available to everyone through AARP. In both of our cases, coverage has been very good. So, you'll find something that works well for you In the meantime, you may want to get a glucose monitoring CGM system now to keep an eye on your sugars if you don't already have one. Insurance generally picks up the cost if you're on insulin. An online diabetes medical company keeps my hubby supplied with sensors, etc. for the Dexcom. You're truly a fortunate lady - you're going to have a great retirement with Cindy supporting you! Stay in touch!
I’ve just gotten Libre 3 for continuous glucose monitoring. I’ll get it se up early tomorrow morning when I see the nurse practitioner at my Endo’s office.I’m looking forward to using it so I have a much better idea as to what’s happening with my glucose.
If possible, ask your NP to apply it for you. My hubby's doctor gave the Libre to my hubby to try at home. The applicator required a lot of pressure and the little disk-thingy whizzed past his arm and stuck tight on the dresser. So my hubby got all upset and asked for the Dexcom. (The applicator for Dexcom is automated, whereas the Libre is manual.) I'm pretty sure there is an easier way to apply the Libre disk-thingy than brute force, so ask your NP for tips and tricks if you can. Glad to hear your team is on the ball with your diabetes!
I’m so happy you’re doing so well! Sorry you’re having bone pain. I actually experienced that with Aranesp injections, used to bring up my red blood cells but not with Procrit. Wonder if there’s another formulation or brand that you could try?
If I have to have these neupogen injections long term I’ll be administering them to myself. My insurance won’t cover neupogen so I’ll be switched to a generic form of the Med. Perhaps that will be better with this bone pain situation. Or, perhaps I’ll adjust. Time will tell.
Thanks for the update of Cindy (I like that imaginative naming of your kidney! I may copy it since my older sister -- who was going to donate to me died the year -- 2015 -- I was accepted to the Waitlist!) All in all, it sounds like you're doing pretty well, especially since you held off dialysis and fought like a Warrior to get that kidney! I hope your WBC starts coming up and straightens out!
I haven't been getting on HealthUnlocked like I used to. You may remember me as mhusband27 (we are followers) and we wrote/spoke to each other many times prior to your transplant.
You know (or may not) that I was transplanted January 2022. I guess in my mind I feel as tho social workers at the transplant hospital and even the transplant coordinators really never prepared me, at least, for some of the mental challenges of being transplanted.
I attend virtual support group meetings for the transplant hospital (once a month) and the LMSW for the Transplant Hospital who monitors the group is a very, very sweet and helpful Social Worker. She keeps us up to date on all the events -- like April was Nat'l Living Donor Month and all the events that were held -- and upcoming events relating to kidney disease, dialysis and transplant. Most of the events are still virtual, but more and more are giving you the choice of virtual or in-person attendance.
My labs have been pretty good. They've had to adjust my tacrolimus several times, but actually for the better than the worst. I have to have it tested again this coming Tuesday. [BTW: After you reach your one year anniversary -- at least at my Transplant Hospital -- they changed me to a different transplant coordinator and told me that my tech relimus should stay between 4 - 6. Before the one year anniversary, it was supposed to be between 6 - 8.
Sometimes it gets confusing. I also had to go back to my outside nephrologist to take over with the nephrology appointments after 1 yr post-transplant. For the first year of my transplant, I only saw nephrologists from the hospital.
It still seems like a 40 hour a week job to keep up with the appointments, the lab test, finding new doctors that address new issues that the transplant May have caused, including a dermatologist because the anti-rejection medication makes us more susceptible to melanoma from the sun if we don't wear sunscreen, as well as a mental health or social worker person and I am looking for an endocrinologist.
Hang in there and keep up the good work. You are a real kidney Warrior as far as I'm concerned!!
Yes, I do remember you!! Thanks for letting me know you’ve changed your ID in this forum.
It sounds like the protocol at my transplant center is very similar to yours. They’ve already decreased my meds considerably. At this point they’re trying to get just the right dosing to protect the kidney while keeping my WBC count up. We’re getting close on the medication doses. Hopefully the recent decrease in Myfortic will get us there. We’ll know in the next few weeks.
I know what you mean about this being a full time job. But as I think back to the beginning, I remember thinking that was a full time job too—just learning everything I could about CKD and how it presents in my body specifically. In my case I also had a lot to learn about type II management. Once I got a handle on all of that and my docs got the right meds in place, things calmed down immensely. It became my new normal.
I view my transplant as another treatment option. It has numerous advantages and would be considered the optimal treatment option for most. BUT it comes with its own set of challenges, challenges that will be individual for each of us. I find myself again spending a lot of time learning as much as possible. Over the past 5 1/2 months I’ve learned the following:
1. How to deal with my prescription drug insurance. This has been no small feat! But I’ve got it now. My meds are refilled on time and delivered on time including those that come through the mail. I’m no longer on the phone for 3+ hours a week with my insurance company and another 2+ hours a week with the pharmacies. That’s a win!
2. I’ve gradually learned what all the new labs they run mean. This has taken some time. It’s complex. They’ve worked patiently with me as I’ve arrived with a myriad of questions. However, I’m now understanding the correlation between my labs and my meds.
3. One of the first things I focused on was learning symptoms that were critical to report to my team.
4. I’ve finally reached the point where I’m managing the insulin administration effectively. I’m no longer experiencing hypoglycemic episodes . This diabetes management with insulin has been a major shift for me.
5. Perhaps of greatest importance, I’m adjusting to how my body feels with and responds to these meds. I’m adjusting; getting used to these changes in how I feel regularly. Undoubtedly some are changes for the better, but others are not. For instance, I have heightened neuropathy now as a result of the meds. I remember having to just to these sorts of changes when I was initially placed on prescription meds after they found the diabetic condition. I adjusted to that so full well expect to adjust to this.
Ongoing struggles;
1. Weight gain. This is definitely not moving in the right direction. I’ll talk with my endocrinologist about this when I see him in June. I’ve mentioned it to the transplant center, they haven’t said anything. It seems as though they want to get me through the first 12 months without introducing any more to my daily life.
2. Low WBC count. This is more recent. It’s not yet resolved but does seem to be moving in the right direction.
As far as the patient education they gave us? I think it was pretty good. They definitely talked about a lot of what I’m experiencing. But, to be honest, hearing it pre-transplant verses living it post-transplant are two very different things. I’m not sure what they can do about that disconnect.
Bottom line—would I choose a transplant as my treatment option again? Undoubtedly! However, I also think it’s critical to be honest with people about the experience. It is a lifelong commitment to taking care of the donor kidney while using some high powered medications that will effect various systems in my body. Doctors will be a major part of my life from this point forward. Labs and other medical tests as well as related doctor’s’ appointments are the priority. These are all both time intensive and significant changes.
Having said that, I’ve asked my transplant team when it will be safe for me to travel out of the country. When it will be safe to travel within the country. Based on their comments, I’ve made tentative plans for some travel within the US as well as travel to the UK. I’ve shared these tentative plans with them. They’re very supportive and have helped me set reasonable timelines, etc.
Well said, you really gave a very comprehensive review of wellness tips here! I would like to add that hair loss (Telogen effluvium) and weight gain are for sure two issues almost everyone experienced in the first few years. Hair loss will recover in most people without intervention; weigh management takes more discipline by ensuring adequate physical activity and watching dietary intake. I hope more patients understand that the first 1-2 year hold the highest risk of losing the transplant and that is why transplant clinicians really need 100% compliance. The more collaborative patients are with clinicians the better the health outcome we will have. Best wishes to everyone.
I attend my Transplant Hospital’s support group once a month on Saturdays and provide the monitor with a lot of info I receive from 501(3)c orgs for kidney education.
If I remember correctly, you are a professor and worked through much of your time on the waitlist and didn’t do dialysis.
I must admit I considered staying on PD. This Transplant route has been a great deal more challenging than I anticipated. Do you remember Mr_Kidney that (I believe) was a monitor and very knowledgeable? He suddenly disappeared off of this forum and I saw a lot of folks asking about him. I think I found him on FB. However, he was one to clearly announce he was not going for a transplant (I don’t remember him telling us why he did not make that choice.)
I remember you did a lot of research on the subject (I did too!).
BTW: my Transplant surgeon was about 4’10”, young, female, and about 7 months pregnant!! Scared me to death. Just before wheeling me in to the surgical suite, I believe she told me that the kidney I got looked perfect and it was from a four-year-old male. The other nephrologists (during follow-up appts) said they had examined my donor kidney and it is a good one! That is a common job for the other Nephs in the Transplant Clinic to do: inspect potential donor kidneys when they get it to the hospital.
According to the statistics that I have found, or perhaps from the nephrologists at the hospital during post-transplant check-ups, I have at least 15 years with this (deceased donor) kidney at my age. That’s not set in stone; that is just their estimation.
I believe I was told that after a year and good blood results (my labs are pretty consistently good), they will allow us to travel. I am in the middle of getting some dental work done. As you know, the tests, examinations, medication changes, etc., never stop. My transplant Hospital has a Walgreens on site and they keep up with the medication refills and mailings via FedEx. I still have a few meds not kidney-related that I get from my insurance company’s Pharmacy.
My biggest complaint is the fatigue and tiredness. I can’t sleep the same as I used to. I can’t sleep in the same position that I used to. I’ve been going to the dentist because all of a sudden, I noticed I would wake up biting on the back sides of my tongue with my teeth, and it was not very comfortable. The dentist says that as we age, our bone structure in our gums will start moving inward, and some of the medication we are on may cause a swelled tongue, so we can get the result of possibly biting the tongue. I even nip at my tongue when I talk with my teeth now, which I never experienced before. I usually have to sleep on my back (never a favorite position). And speaking of sleep, or the lack there of, it has been up and down and up and down like a yo-yo. Sometimes I sleep well; sometimes, not so much.
Hang in there and share if you learn anything new and spectacular!
I’ve seen of offers for kidney patients to participate in clinical studies, but they are usually very rare types of kidney disease. Most of them do pay the participants.
I’m participating in a study for those with Type II who developed CKD later this month. They’ll grab an A1C on me and then it’s interview questions. I’m happy to participate as it may help others.
Cool! I have been invited to participate in an organization called "IPRO ESRD Network Program". My name was provided to this National organization by the LMSW at my Transplant Hospital. A meeting is coming up in June and I will be a volunteer as a Transplant Patient. I think the Hospital's SW volunteered me b/c I am in her support group; I talk to a lot of Transplant patients individually; and do a lot of research.I hope you are able to contribute to your volunteer group!
My son needed a transplant but I was not a match. I was a match for someone else and someone else was a match for my son. 6 people had operations on 3/31/2022- 3 donated and 3 received. A true blessing!!
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