Medical care after transplant?

[kristina]

Hello again,

I have been wondering for a little while now, how kidney-transplant-patients are medically being treated and looked after? Is "it" differently "handled" in different countries?

For example, I "only" have blood taken for tests and then I have to wait for any of the doctors and they write down my symptoms etc. and  ...  that is it. They mainly look at their computer, hardly look at me and hardly any or no action is being taken afterwards, which often makes me feel like a "walking transplanted-kidney"...

Do patients in other transplant-centres in other countries see the same doctor or do they see each time a different doctor? Is there any medical research etc. on transplant-patients being done?

When other transplant-patients go and see their transplant-clinic and medics, what happens there? What are other patients looking for in their transplant-clinic? I am just wondering about procedures ...

Many thanks for answering from Kristina.

[MooseMom]

Hello, Kristina.

I used to have bloodwork done every month, but as time went on and it was apparent that I was stable, I have bloodwork done every two months.  My tx clinic gives me what they call a "standing order" which I take to my local lab.  I get a new standing order every six month as that is what my lab requires, so after six months, I contact my tx clinic via the patient portal called "MyChart" (I am sure you've seen a few of us talk about MyChart) and ask them to send me a new one that will be good for the next six months.

If I get numbers that my tx clinic are concerned about, they will send me an order for specific lab tests to be done.

Fortunately, I've  been pretty stable for 9 years.  For the first months post tx, I had to trek up to my clinic for labs and/or procedures like removal of the stent, but after that, I don't see my tx team and wouldn't expect to unless I had a tx specific problem.

I have always felt well done by my tx team.  I like them.  They've always been there for me in the early years when I was nervous about everything.  There is someone from the tx clinic on call 24/7.  All of the coordinators have access to my records, so if there is a different coordinator on call, s/he can still help me.

I see my tx team once a year for an annual checkup.  By the time I see them, I will have already had my results relayed to me by the lab, so I will already know if there is a potential problem.  If there is some result I don't like, then I can be ready with questions once I actually see my team.  At my annual appointment, we review my results, I'm asked how I've been doing and if I have any concerns.  We review my meds; it's pretty much a regular check up.  Back in 2016, we were concerned about my rising creatinine, so we decided I should be biopsied, and we made an appointment for that procedure to be done at the hospital.  (I ended up cancelling it because as I was being prepped for the procedure, my labs taken that morning came back showing a much lower creatinine level.)

I am really sorry your tx team is making feel like you are merely a walking transplanted kidney.  My experience has been very much different from that.  I will be interested to hear about other people's experiences.

[UkrainianTracksuit]

Hi kristina,

I can say that my experience is similar to yours in that the transplant fellow and the doctor look at the computer screen, say everything looks good, and then tell me to come back in 6 months. An appointment goes like this: get blood drawn in the morning, go to appointment, intake nurse asks a 'questionnaire form' type of set questions, tx fellow comes in - goes over blood work results, and then gives a run-down to the tx doctor who then comes in, looks at the computer, and says everything looks good...come back in 6 months. That's it.

Locally, I see a non-transplant nephrologist, and they take blood every 3 months. Same sort of set-up. Have blood drawn, look at my results a week ahead of time, and then go to the appointment.

My numbers are really good so they aren't concerned about me. Because my numbers are so good, if I complain about tiredness or nausea, they state it's not related to the tx-medication, so just learn to deal with it.

Whoever coordinates tx information en masse is great with mailing out drug benefits information changes or vaccination primers.

It's a little bit of a complex situation here because I live far away from my tx clinic. The local nephrologist tells me to defer to the transplant team so it's just like digging a hole at times.

Transplant has made my life better immensely in some ways, but a lot more complicated in others. The doctors are just there to deal with the function of my transplanted organs, and not the myriad of other things to contend with, related to the new organs.

May I ask kristina,  did you expect post-transplant care to be something different than has happened to you? Besides the awful situation with your hernia - which is just a shame - it seems that you feel very let down by your transplant team. Did you expect closer monitoring?

[kristina]

Many thanks MooseMom and UkrainianTracksuit for your kind and illuminating thoughts, it helps me a lot to get a clearer picture.
I need to add that at the transplant clinic my weight and BP have also been taken, but since my weight and BP are quite stable and have not changed, there was no help needed ... touch wood it continues like that !!! ...  because I have noticed, that, in order to keep myself as slim as I have always been is becoming quite an art after a transplant, because of the very heavy anti-rejection-medication.

My expectations about post-transplant-medical-care were perhaps a bit idealistic, mainly, because before the transplant my husband and I went to two transplant-seminars, where the listeners were promised, that their quality of life would become much better after a transplant and it came as a huge disappointment to notice, that in my case the quality of life was in fact much better on dialysis... at least I was not housebound on dialysis, whereas right now I am.

... It would be wonderful to be medically looked after in a transplant-centre, where medics are truly interested to listen to each patient about their medical problems i.e. transplant-incision-hernia much earlier and as a result take action much, much earlier.

I would also like to have a chance to communicate without possible misunderstandings and with a clear direction in how to go ahead and to know, where exactly I stand. In medical matters I am very much a "down-to-earth" person and very much like to be completely clear about proceedings.

I would also like to be seen at a transplant centre where as a patient I can feel safe and reasonably trusting and where I don’t need my instinct to work overtime... This could help me so much to avoid too much stress with another stress-related SLE-flare-up "thrown in" .... I would also like to meet transplant-specialists who are thinking primarily about the patient and assist in sorting out their medical difficulty a.s.a.p. and only secondarily about their medical research-interests...

Many thanks again for your kind thoughts from Kristina.

[UkrainianTracksuit]

Oh kristina,

Thank you for sharing your thoughts on how you would prefer your post-transplant care to be.

If you don't mind, I'd like to ask a question. If the post-operation hernia did not develop, would you still feel the same way about your transplant? Meaning, if you did not have to experience the pain brought about by "medical nonchalance" would you still be happy that you received a transplant?

I can attest to the atmosphere at transplant seminars or introductory meetings in the primary stages of the transplant process. Yes, indeed, they do present transplant in an extremely rosy picture. That said, the majority of patients do experience an increase of quality of life than prior to transplant. People are able to do so many things, but beside that, overall health improves as well.

At the same time, I distinctly remember disclaimers about surgical risks, medication side effects (the biggies, like osteoporosis, cancers) and longevity of the otgan. Transplant was presented as an opportunity to have as close to a normal life as possible. Absolutely everything we do has risks and we have to acknowledge that even if it is not presented to us.

Truth be told, I was presented a MUCH rosier picture at a "preparing for dialysis" seminar as well as "have a look at fistulas" only to be personally shown beautiful new ones that did not morph into something otherwordly-looking.

Your hernia situation is downright a medical tragedy. Surgeons advise patients that hernias are a possible consequence of surgery as well as in the early following months after. Since patients are closely monitored for the year after transplant, it blows my mind that no one took it seriously.

I acknowledge that my transplant specialist is more focused on research because it is more intellectually stimulating than being a clinician. They get to engage with people of similar stature and bandy about ideas that one doesn't experience in the clinic setting. That is my case though - I am stable with good numbers and no real issues. On the other hand, you have presented a serious chronic pain issue (hernia) that anyone that cares about the transplanted organ (attached to the patient!), even for medical purposes, would want rectified. It boggles my mind.

I am sure you have already done so, but is there any way you can arrange a meeting with a transplant specialist, even during a clinic appointment, to be blunt on the matter of where you stand? Know what your numbers mean in plain terms, how are you doing overall (minus the debilitating hernia), whatever you need to do. It seems as though the air needs to be cleared so you understand where you stand in your transplant life.

I will be honest to say immediately after transplant I had so many ideas of how my life would be "better" and none have really panned out, besides the best gift ever of being off of dialysis, and not having to think about further attempts to create any venous access for awhile now. I had to accept that expectation versus reality are often skewed in different directions.

Best of luck, kristina. It truly stinks that you are in this situation.

[Simon Dog]

At the same time, I distinctly remember disclaimers about surgical risks, medication side effects (the biggies, like osteoporosis, cancers)

Funny thing, osteoporosis is also a side effect of not getting a transplant.

[kristina]

Many thanks Ukrainian Tracksuit and Simon Dog for your very interesting thoughts.

... To be honest, I am not sure how to answer the question how I would feel about the transplant if the untreated incisional hernia-pain would not make my life such a misery, because I honestly don't know. But I certainly have noticed, that there is no comparison to the medical pre-transplant-seminar-care-and-promises etc. and to how I have been left feeling about the pain and my health and well-being since this transplant took place.

Of course, I was aware of some of the transplant-risks, as much as a non-medical person can be, but I would have hoped, that there is a bit more serious medical after-care taking place, which unfortunately I have not experienced - yet - and this makes me feel extremely vulnerable.

Also ...  since "my" transplanted kidney is not fully working anyway, I feel doubly cheated, because right now I can do nothing but continue to hope and wait to have this incisional hernia operated on, after waiting over two and a half years already, living in misery. I also feel very humiliated, that, as a result of me putting my whole trust into the medical and humanitarian integrity of doctors, it would now appear, as if my trust has been misplaced, since I have been left in such pain for such a long time without anyone bothering about my poor quality of life because the misery of the pain has also left me almost completely house-bound and that does not seem fair.

I have read that after-transplant-problems like osteoporosis, skin cancer etc. are real risks and I am doing my very best and try to avoid all that as much as I can. But it would have been lovely, if I would not have been so badly left on my own after the transplant and a little humanitarian-medical consideration could certainly have gone a long way, whereas at the moment I don't really know where to go from here ...

I wonder how many other kidney-transplant-patients go through similar heartache and similar experiences? 

[UkrainianTracksuit]

Kristina,

I truly feel something is awfully amiss in your case that no wonder you are rightly upset and heartbroken. Something just does not add up at all.

Post-surgical incision hernias are common so (as you know) your complaints are valid and the team should have been on top of your case following surgery. That is why this is so odd and their flippant nature at your pain is just not right in any situation. Did they give you physical examinations in the months following your surgery? As in, you would lay on a table and the doctor would press around your incision site and organs? That happened commonly for at my appointments in the months following.

Another major complication in your case is this darned pandemic. It is my understanding that hernia surgery - no matter how much pain you experience - is considered to be elective. I am unsure what the situation is like in the UK with the surgical backlog, but here in major cities it is something awful.

Has anyone been in contact with you to arrange appointments for any follow up? if I recall, you stated that you had to start from "square one" again after you noted that you were top of the surgical wait list.

Look, I don't want to bombard you with questions as you are the one suffering here. It is just so Kafkaesque what has happened to you in a fairly straight-forward situation, especially in regard to abdominal surgeries! So sorry...

I don't think you'll find many other answers to your questions (whether patients are happy or not after transplant) because this site is not so active anymore. But, there are other transplant patients all over the internet, telling their stories. Perhaps have a search just to read?

[SooMK]

Hi Kristina, I can't quite fathom the post-transplant situation you find yourself in. This should not be happening. I would hope to read, in some not so distant time, that your hernia operation has been completed and you are doing much better. It's like you are a patient who has dropped through the proverbial cracks.

I have my labs done every 3 months locally and go (except during covid) once a year to my transplant clinic 2 hours away.  My tx clinic is always responsive via MyChart and I have no issues with them. I have been seeing the same neph since my transplant and he listens just fine. The only problem for me is the silo'd way American health care unrolls. Unfortunately, my body did not get the memo. My PCP will refer me to specialists and my neph refers me to specialists. But none of them talk directly to each other. I am learning to adjust.

I was very concerned about post transplant meds and side effects. I frequently read (probably here on IHD among other places)  that transplant is a treatment, not a cure and I do not feel what I was told pre-transplant was inaccurate. At 72 years old I am going to have health issues whether or not I have kidney disease. Unraveling whether or not the transplant or antirejection meds are responsible for these ailments is seldom clear.

I had one interaction, just months before my transplant, where a much younger person had had a kidney transplant several years before. She told me that for her, transplant had made her life normal. I would not go that far but it's pretty close. I wish that for you and hope that it will happen.

[SooMK]

Hi Kristina, I just came back to post again because I thought you might be interested in the health unlocked kidney transplant forum run by the National Kidney Foundation (https://healthunlocked.com/nkf-kidneytransplant). A man on there posted his view of kidney transplant and it's very similar to what you have posted. It has had many, many people replying with similar feelings. It turns out you are far from alone in your feelings. They have a lot of activity on that site. Hope that helps.

[kristina]

Many thanks again for your kind thoughts and suggestions, UlrainianTracksuit and SooMK, it is very much appreciated.
In trying to answer your questions I think, that my after-transplant health-care might unfortunately have moved to the wrong track, perhaps already during the transplant-operation and unfortunately "things" have not had a chance to improve ever since ...

As you have already mentioned, this situation has become rather Kafkaesque, because for me as a patient it has become very difficult to see the wood for the trees any longer in all that mess.

I have tried to find some answers and perhaps some constructive ideas from other patients at https://healthunlocked.com/nkf-kidneytransplant and other kidney-transplant-gone-wrong-sites, and on one site I really "let out" about all my dashed hopes, total despair, desperation, misery, hopelessness, fear, anguish, gloom and frustration etc. and was instantly warned, that if I continue to complain so much about my medical-after-transplant-mess, I might find it very difficult to receive any healthcare from then on, because doctors apparently (as I was warned) do not like complaining transplant-patients. So, as a result of that well-meaning (?) "advice", I shall refrain from complaining any further ... in order to save, what's left of my messed-up after-transplant-life ... for as long as I can take it ...   

[SooMK]

I would worry about this too. It may or may not be real but none of us are in positions to take chances that it is real. I surely hope you get some help through the health care system. And evidently even trying to find like minded others needs to be done carefully. So unfortunate.