Transplant

[Seaweed]

Can someone tell what's like to have a transplant ,I like to hear from someone who has it done

[kristina]

Hello Seaweed (fascinating name ... and no doubt you live next to the sea?)

I am sorry that you have not had an answer to your question yet and unfortunately my transplant-story is, for more than two and a half years, not a happy transplant-story, but hopefully you come across some happy transplant-operation-result-stories as well ...  because ...  I can't imagine that my story is a usual one, otherwise kidney-transplants would perhaps not be at all popular  ... ?

My bad luck started, when the very respected surgeon could not operate on the very day when my "number" came up and so my story already started with this very bad introduction. The "replacement surgeon" seemed unfortunately not yet trained enough to undertake "the job" and so I ended up with "damaged goods" i.e. two "kinks" were left in the renal artery after "my" kidney-transplant-operation and I was also left with a hardly functioning new kidney and, after two failure-attempts to repair these "kinks" in the renal artery much later, only one of these "kinks" could be reasonably well "repaired" with one stent being "put in". But unfortunately, to repair the other "kink" seemed too dangerous - as I was told -  so it was just left as damaged as it already was ...

The kidney-transplant itself left me with constant chronic pain in the transplant-incision-area, which was diagnosed by one senior transplant-surgeon as an incisional hernia, for which I was being put on the operation-waiting-list. But when my husband and I started to save money and also asked family and friends etc. to please help, we then were able to pay lots of money, in order to see one of the very best private hernia-specialists for the operation. But when we saw him and he thoroughly checked-up on all the results plus examining me thoroughly, he could not detect any hernia at all and so it comes, that I am back to "square one" again without any positive medical result to approach this chronic pain and no idea how to go from here. But I am glad to have seen this specialist all the same, because he told us that I only should have an operation if my life was in danger, because of my complicated medical history plus possible blood-clotting.

What has been left from my transplant-operation (the donor was a deceased 80-year-old gentleman who had suffered an accident and this makes me wonder how long or how many years my transplanted kidney would genetically last anyway, since the kidney was already 80-years-old?) ...  is this constant chronic pain in the transplant region, total exhaustion probably because of the strenuous chronic pain, constant Lupus-flare-ups which seem to be caused by the chronic pain ( ... as you can detect, I am going in circles i.e. chronic pain causing Lupus-flare-ups which again originates from the chronic pain and back to the Lupus-flare-ups again etc) and a totally miserable life, spent most of the time "parked" on the sofa doing nothing, unable to concentrate and still hoping for a better life somewhere ... somewhen ...

Would I "go" for a kidney-transplant again? That is the leading question, but there is no doubt that you can already guess, how I am thinking about it right now ...

If you would ask me what I would "do" or "make" differently after these dreadful experiences, I would say the following:

First of all I would check-up on the reputation of the transplant-team - not from their PR-team - but directly from their transplant-patients and I would try to talk to as many transplant-patients as is possible...  beforehand and not only at this hospital but at other hospitals as well. I would also check-up about different surgeons and make sure that I would not come across a not-so-experienced replacement-surgeon and thirdly I would make absolutely sure about the hospital itself. Why? For example : I was transplanted in a hospital where, after my transplant-operation, I had to share a hospital-room with another four patients (they were NOT transplant-patients) and unfortunately they did not appear to be particularly bothered about hygiene etc. in the shared bathroom-facilities etc. etc. Since I was the only transplant-patient in this particular hospital-room and therefore being forced to share all these facilities, I suffered considerably and because of my impaired immune-system immediately after the kidney-transplant I suffered terribly (not only hygienically) and unfortunately I had hardly any assistance from the staff because they did not seem to understand what I was saying. Because of all this, I suffered two very difficult-to-treat infections straight after the transplant-operation, which naturally had a very bad effect on my transplanted kidney-function and I was also on very heavy antibiotics and had to spend too much time in a place I would not go voluntarily under normal circumstances ... But last not least, the transplanted kidney itself still appears very fragile and appears not to function reliably either and perhaps I should really have been put back on the transplant-waiting-list ...
I wish you much better luck and I shall keep my fingers crossed and send you my best wishes from Kristina.

[MooseMom]

Do you have a specific question?  All I can really say is that I had a transplant 9 years ago and have had no issues.  I had surgery early Sunday morning and was home by Wednesday afternoon. 

The real challenge is managing the anti-rejection medications, but once you get into a routine, it all becomes second nature.

I lead a "normal" life, but covid is a real challenge.  Those of us who take these meds are not well protected from the virus despite the vaccines.  That is a current and ongoing concern.

[tigtink]

I had my transplant two years ago next month. Like MooseMom, I sailed through the surgery itself. I received my transplant on a Thursday, never took pain meds after the first day, and was home on Sunday. The first two months were challenging because of side effects of the immune suppressants, but after some adjustments I recovered well. Things have gone very smoothly since then. No real side effects, stable numbers, and good overall health. I get monthly blood tests. Things got back to normal very quickly and I don't focus on it much anymore. COVID has definitely presented challenges and being immune suppressed is limiting under these circumstances. Still, I am grateful I had my transplant before COVID hit. I am careful, masking, social distancing, and limiting my exposure to groups. I got my third Pfizer shot on Sunday, so hopefully I will be more protected. Also like MooseMom, I feared dialysis much more than transplant. I am glad I chose that route.

[SooMK]

I had my transplant over 7 years ago. I was very fortunate to have a friend give me one of her kidneys so for that I'm very grateful. The surgery went pretty smoothly but it's a big deal and took quite a few months to recover from. I was 65 at the time. My expectations were that transplant is a treatment, not a cure. I cannot now say whether I heard that from my own research or through my conversations at the clinic. For me, it feels like a treatment and not a cure. Sometimes it seems like it's one thing after another. Not huge deals but not normal either. I had two uti's, one escalated to an emergency room visit and intravenous IVs and many months of trying to recover from the damage that antibiotics can do. A year or so later I had another one that I seemed to be able to keep under some kind of control using d-mannose and probiotics (which my neph was fine with but not all of them are). I believe that those treatments kept it from turning into a serious issue but it lasted nearly a year. Antibiotic resistance is a big problem for me. I have some other minor QoL issues but is it the anti-rejection medication or aging? It's a mystery. Having done all that complaining, I feel incredibly fortunate. I try to do all the right things, take my meds consistently and do my part. As everyone else has said COVID continues to be frustrating.

[Seaweed]

I'm so sorry they sell kidney transplant as that  what we need the truth is there is no cure for us it just the worst of two evils I live in Yorba Linda CA I was on pd for years and I switched to hemo dialysis my hospital is script hospital

[Seaweed]

I'm so sorry they sell kidney transplant as that  what we need the truth is there is no cure for us it just the worst of two evils I live in Yorba Linda CA I was on pd for years and I switched to hemo dialysis my hospital is script hospital my question is what's it like with the rejection drugs

[Seaweed]

mrtdwyer@sbcglobal.net tom

[MooseMom]

Ah, the anti-rejection drugs.  Well again, everyone has their own story.

About three months after my transplant, my labs showed a nearly total absence of neutrophils, a type of white blood cell.  Turns out it was the myfortic that cause this, so I was taken off it for a short period of time and then given two shots of Neutropen, and things went back to normal.

Tacrolimus gives me the jitters, enough to be annoying, but not enough to make me want to change to something else.  The jitters are worse when I am tired or overworked or really stressed.

Prednisone makes me feel hot.  I crave the winters.

Other than that, I've had no problems so far, and I'm 9 years in.  At first the whole pill regimen felt a bit overwhelming...when to take each pill and how to take it...but it quickly becomes second nature.

[kristina]

Hello Seaweed,

Despite the fact that so much did go wrong with my kidney-transplant, there have been hardly any problems with my anti-rejection-medication so far (touch wood it continues like that!!!) and because I have kept myself very slim and as fit as possible over the years, it has been only necessary for me to take the very lowest dosage of my anti-rejection-medication (touch wood and hopefully it continues like that !!!) ...

I send you my best wishes from Kristina.

Good luck !

[Seaweed]

Thanks for the info I sign up with script hospital because they won't use steroids unless nessary I was afraid of having serurgy because of the pills I need to go back to work I had an unexpected turn in life  my wife daughter had a child and we had to become foster parents the little girl is a year old next month and cps still won't her 12 hrs a week it's hard in us we had the baby since birth  beautiful little girl and she non stop it's hard on us 

[kristina]

Hello Seaweed,
I send you good luck-wishes with the Script Hospital and, as I have mentioned before, my anti-rejection-medication goes well so far without any Steroids (touch wood!!!) and since you are helping to look after the "Little One", you might be "as fit as a fiddle"  and hopefully your transplant goes well and I wish you all the best and kind regards from Kristina. Take care.

[Simon Dog]

I had mine done at Tufts/Boston that routinely uses a no-steroid protocol (except for some administered while in-hospital post surgery).

[kristina]

Thanks for the info I sign up with script hospital because they won't use steroids unless nessary I was afraid of having serurgy because of the pills I need to go back to work I had an unexpected turn in life  my wife daughter had a child and we had to become foster parents the little girl is a year old next month and cps still won't her 12 hrs a week it's hard in us we had the baby since birth  beautiful little girl and she non stop it's hard on us

Hello again, Seaweed,

I don't know if it may help you, but as a student I assisted, as a part-time "job", to look after some Little One's in a nursery and whenever they had teething-problems and became distressed and fretful etc. I always let them listen to Mozart (i.e. Eine kleine Nachtmusik etc.) and it always "did the trick" and helped them, because it took the attention away from their "teething" and made them listen attentively to Mozart's "Eine kleine Nachtmusik" or his  "Clarinet Concerto in A major K 622" etc....
Good luck-wishes from Kristina.

P.S. If you would like to try this out, please make sure to look for "older" recordings from the 50's, 60's and early 70's, because there the rhythms and tempo are often "just right", whereas newer recordings often "rush through" the pieces as if the violinists are in a terrible hurry and this great rush often takes the joy out of listening through these wonderful pieces...