My pre-dialysis-days have finally come to an end...

[kristina]

Many thanks again SooMK and MooseMom and I shall try to find out as much as possible from the specialist(s) about my medication and its possible “influence” on my hearing-abilities etc. and what can be done about it, plus possible chances for a hernia-repair-operation a.s.a.p. etc.

Fortunately I don’t need a hearing-aid yet, possibly because my hearing was originally very good and my hope is that because of this the deterioration might take a bit longer ...

I just feel a bit hard-done-by because I was not really prepared, to find out, as a devastating experience, how easily and sadly “things” can go wrong after a kidney-transplant and I firmly believed originally, that if I do my very best it should go a long way, as it did during “my” dialysis-days. But unfortunately in this case I was wrong, because, in “my case” it turns out that after a kidney-transplant one needs much more medical help than originally thought and just trying one’s very best as a patient is not good enough and if some medical help is not forthcoming, things easily can go “pear-shaped" ...

To answer the question about my kidney-function ...  I am not quite sure about it myself, because it was very poor from the very start.  But with my “mollycoddling care and attention” it developed in a positive direction and began to show better readings. But unfortunately it stopped developing into further better readings, when this hernia-pain became so overriding, whilst at the same time I felt devastated because I felt that I was left “dangling” on my own with this problem. At first (two years ago) the pain started as a nuisance but then it began to develop into a “very loud” and terrible pain, which necessitates pain-killers I have to take now all the time and this experience has so far been very devastating and extremely demoralising...

... But nevertheless ... my very old “new” kidney still just about tries its best to “hang on”... just like myself ...

[SooMK]

Yes Kristina, please hang on. Until this hernia is fixed and you can get past the pain killers, your new kidney isn't getting a fair shot. I'm embarrassed to ask this question, since it seems like I should know this, but: Where in the world are you? Your clinic experience seems quite different from my own. Your routine labs show your kidney function, so this should be straightforward?

Hope you see some progress soon.

[MooseMom]

Kristina, it pains me greatly that you are feeling any sort of regret about your kidney transplant.

It may help you to know that your hernia is not necessarily specific to kidney transplant.  It can happen with any sort of major abdominal surgery.  You just got very unlucky, the worst part being that it took so long to find and will take even longer to repair because of covid.

As for the possibility of the tac causing hearing problems, that's definitely something that you MUST discuss with your hearing specialist and your transplant team.  Most side effects from the meds are minor, and we learn to deal with them.  But if a certain side effect is really affecting your quality of life, please say so, and I would think your medication could be changed.  I have not done a ton of research into this topic, but what I have read (in the instance of a liver transplant patient) suggests that hearing is restored after discontinuing tacrolimus.

https://onlinelibrary.wiley.com/doi/full/10.1111/j.1432-2277.2006.00317.x#:~:text=Neurological%20and%20sensorineural%20side%20effects%20from%20tacrolimus%20(TAC),Acute%20onset%20of%20hearing%20loss%20is%20seldom%20reported.

Please don't feel downhearted just yet.  There is hope as long as your kidney function is keeping you off dialysis.  I don't want to dismiss your other problems as "minor" because they are clearly causing you distress, but I feel they are fixable...eventually.

Take care, Kristina.


Maybe you could use the link above as a starting off point for your own research.

I am now wondering if I should also speak to my doctor and arrange a hearing test to see if tac is affecting my hearing of if I'm just getting old.  What with covid and all, I am not keen on any new doctor's visiits, and I have yet to decide if the constant ringing in my ears is worth a medication change; I don't want to take that sort of risk at this time.  I'll have to think about it.

[kristina]

Many thanks SooMK and MooseMom for your kind thoughts and encouragements ... and SooMK, to answer your question, I am in London and my transplant should have been – theoretically – straightforward from the start – but unfortunately, as you can "see", it was not and two years after the “event” I am still hoping and struggling and still trying ... and MooseMom, many thanks for providing the link and perhaps this Tacrolimus “has lots to answer for” and hopefully there is another way forward with perhaps another medication? Mind you, at the moment I feel a little “insecure” after all these negative experiences with the clinic and I have noticed, that my negative experiences during the last two years have succeeded in making me feel a little uncertain and unsure and hopefully I have a chance to be "my old self" again soon. But at the moment I almost feel that if I try to receive some medical help at this clinic I might walk “from the rain straight into the waterfalls” ... so to speak ...
Many thanks again from Kristina.

[MooseMom]

I can certainly understand why you are feeling like you might want to avoid all doctors and clinics at the moment!  You've had some unfortunate experiences, and covid doesn't make it all any easier!  Maybe it's just as well; you can take some time and decide what you might want to do next.   

[kristina]

Dear MooseMom,
Many thanks again for your kind thoughts. After our last night’s exchange of thoughts I woke up this morning with the decision to go to “my” next medial appointment at the transplant-clinic to see the transplant-medics and I shall tell them exactly how I feel about their lack of health-care over the past two years and what it has done to me physically (constant pain & not recovering yet from the transplant-operation etc.) and mentally  -  and hopefully they give me an idea what this was/is all about and what they think and say about it.

I shall also lodge an official complaint to my health-authority etc. about the lack of health-care I have experienced since my kidney-transplant over two years ago and I shall ask them to please investigate ...

Many thanks again from Kristina.

[MooseMom]

Good for you.  They are not going to know how much you've suffered unless you tell them!

[kristina]

... I saw one of the surgeons and informed him of my continuous chronic pain and a resulting inability to do anything at all  This leaves me being constantly “parked” on the sofa without a chance to play the piano, without a chance to paint, without any chance to ever have another exhibition of my work etc. and/or go out for a walk etc. Unfortunately, the surgeon didn’t seem to be overly bothered but informed me that he disagrees with the former diagnosis of a hernia and, having looked at the CT-scan he thought that either the transplant-operation-scar did not heal-up properly over the past two years and therefore etc. ... and/or a nerve has been trapped etc. ... and/or some nerve-damage took place during the transplant-operation, causing me to suffer from chronic pain from then on.

Unfortunately there were no positive suggestions made as how to proceed, but it was pointed out that because of Covid etc. etc. etc. etc. and because of that etc. etc. etc., he suggested that I could take from now on some nerve-drowsing-pain-killers which are usually given to epileptic  patients. But since I do not suffer from epilepsy at all, my mind goes dizzy about what is going on and/or possible side-effects of a medication which is not for me in any case and I wonder how appropriate and helpful his suggestion could be ? ...

I also wondered what ... apart from possible side-effects to my mind -  such a “medication” would do to my fragile transplanted kidney? I told him that my alertness and logical thinking are hopefully still good assets and my mind surely does not need to be drowsed-down and sedated because of a chronic pain which could have been sorted out ages ago ... By now the “discussion” was becoming a bit louder and I also mentioned in the following heated “discussion” that I deeply regret to have been talked into such a terrible kidney-transplant-experience.

The hospital-transplant-“sales-team” were ever so good to “sell” me the idea of a kidney transplant at their transplant-discussion-“seminars”, to which I was invited three times. Unfortunately these "seminars" took only place in order to go ahead with transplants, whereas the fact that I have been left on my own without any positive or helpful medical assistance for either the pain or how to go from here and, as a result I have been left 24/7 in constant unbearable pain. This emotional outbreak of a very disappointed patient (myself) did not touch him and I felt very strongly, that he could not care less. After all:  his career is satisfactorily established and shame about some unsatisfied left-over-patients like myself who “got lost” on the kidney-transplant- conveyor-belt....

I might go ahead with one more meeting in the hope to finally receive some medical help from this so-called “Transplant-Centre-Of-Excellence”, but if the next meeting continues to go without any medical assistance/help offer, I shall have to re-think very deeply about what to do next ...after all :  this has been going on for over two years now, I feel exhausted and I did not “go” for a transplant in order to lead from then on a life of total misery. I find it all very sad and extremely disappointing, especially since I trusted them and I feel it makes a mockery of my years of trying so hard at University plus my continuous studies at the British Museum Library plus the many exhibitions with my work, plus my poetry plus my piano playing, plus etc.

One terrible realisation for someone like myself is the fact that the kidney transplant-centre only consists of : kidney-transplanted patients sitting motionless, where no one talks, then there is a registration-desk to “book in”, then there are some nurses to take one’s blood, one’s weight and blood-pressure and finally, at the end of the conveyor-belt there are the doctors.

Unfortunately, if a patient is distressed about “things” not going right, , there is no one to talk to. There is no transplant-coordinator who could possibly assist about how to go from here.. There is not one person in the whole centre where a distressed patient like myself could talk to and receive some help to sort this mess out and there is no one to perhaps get some feed-back or some assistance or some help, there is no social-worker one could talk to, there is in fact nothing... whereas BEFORE “my” transplant took place, everything was in place to “lure” the desperate ESRF-patient unto the waiting-list ... Of course, the transplant doctor told me that without a transplant I could be dead by now and in my disappointment I answered that at least I could have died in dignity whereas right now I “drag on” in constant pain as if that could possibly be a life ...  To say that I am completely depressed and disappointed right now would be an understatement  ...

[MooseMom]

Oh kristina, I'm just baffled by the lack of post-tx care!  I just don't get it.  I mean, really, the surgery is the "easy" part; kidney transplants are done every day.  It's the after care that can be complicated because every patient is presented with a vast array of drugs and lifelong tests and vigilance.  KEEPING a new kidney healthy for years and years is the tough part.  This is why I just don't understand why the NHS doesn't seem to have transplant coordinators and/or a support/aftercare system.

If it were me, I don't think I'd go for the anti-epilepsy drugs as I've heard they are really unpleasant.  I'd certainly get a second opinion about that.

How easy would it be to sort of start all over and find another medical team to help you?  Can your GP refer you to someplace else because as it stands, this surgeon doesn't seem to either know or care what it is exactly that is causing your pain.  Surely you'd have to have that bit of information before the pain can be treated!

Yes, DO go with the next meeting and outline your concerns.  Your current situation is unacceptable.

I am so sorry.

[SooMK]

Oh no. I'm so sorry. I echo what MooseMom said. It sounds like you need an advocate. In normal times you could bring someone with you. Many times just the presence of another person can make a difference. Not too likely in the middle of a pandemic though. Have you tried talking to your transplant coordinator? Even though it doesn't seem like it from your position, transplants are very precious and a life changer (in a positive way) for most people. If one doctor says it's one thing and another doctor says it's something else, it seems like another opinion is called for. I agree that putting you on some drug without knowing what the actual problem is doesn't seem like a solution unless it was meant as temporary to help you until a real solution can be found. I would hate to see you give up as your quality of life is on the line.

[UkrainianTracksuit]

Very sorry to read of your continued run-around situation, kristina. It sounds truly awful and your frustration is apparent!

But, I do have one question: do you still see your transplant surgeon (I know that you mention surgeon but I want to be clear) or do you see a transplant nephrologist? As in, a nephrologist that specializes in post-transplant care.

The reason I ask this is because I still see my surgeon for my transplant needs. I do not have a transplant nephrologist. They have a similar attitude to the doctor that you see: often concerns raised get dismissed and I have to answer their direct question, "Well your quality of life is better, right?" And if I reply with something not 100% on target, I have to sit there and fill out YET ANOTHER quality of life score, like I'm depressed, when I'm not... I just have a problem.

The way it was described to me by another doctor is that clinicians are more focused on continued long-term patient care and surgeons have their narrow focus of patient alive/patient numbers look good/nothing really left to consider. Hence, a more nonchalant attitude to patient concerns. Like you say, their job is done. Those that have had a single kidney transplant are followed by nephrologists and from the outside looking in (from my perspective) they receive a whole lot more holistic and centered care.

Nothing truly helpful, but it might be worth a thought.

[enginist]

I don't know how it works over there, but it's clear to us over here that you are getting thoroughly worked over.  Indifference is the primary problem, which may be due to the exodus of doctors and nurses caused by Brexit, compounded by the problems from the virus.  You'll probably need both luck and persistence to find a sympathetic soul in a system that has failed you so far. 

[cassandra]

Hi Kristina, I’m so sorry what’s happening at your end. Have you tried through the GP to get at least a social worker?


Love, Cas

[kristina]

Hello again and many thanks for all your kind replies and your helpful thoughts and suggestions, it helped me a lot to feel less isolated with this medical problem.

I saw another surgeon and he confirmed the first diagnosis & explanation for the pain and this consultation was much more positive and forward-thinking. But unfortunately, the current covid-restrictions are not in my favour and these restrictions do not help my situation at all because, as I was told, there are no operations taking place at all, unless the patient is in a life-threatening condition and no transplants take place either right now.

I was also told, that my desperate medical situation is known but nothing can be done right now because of covid-restrictions and that all I can do for the time being, is to "carry on" taking pain-killers, whenever most necessary, but that I should be very careful and keep them to an absolute minimum ... and finally I was told that I have to wait until the covid-restrictions are being lifted and the current operation-waiting-list can be approached again.

This consultation made me feel a little more re-assured about my situation, because at least I was given all the facts and the truth and that hopefully helps me to deal with the situation in a better and more constructive way, since at least I know where I stand right now with my medical problem and the resulting pain. This consultation also made me realise that of course, my medical problem, which was created by accident during my transplant-operation, is very bad and very painful for me, but at least I now know that there are no operations taking place at all and I was also told that with such a compromised immune-system like mine after my kidney- transplant, I would not have much of a chance if I came across one of the covid-patients who currently fill-up every hospital here "to the brim". Unfortunately nothing can be changed for the better at the moment and I just have to wait for my medical situation to be sorted out in an operation ... eventually ...

Many thanks again for your kind thoughts and suggestions from Kristina.

[MooseMom]

So many causes for your pain have been presented by your doctors/surgeons!  Possible UTI, a poorly healed scar, nerve damage resulting from the surgery, and then a hernia.  Since you've mentioned an operation (that can't be performed now because of covid restrictions), I am assuming that the final diagnosis is a hernia?  Is that right?

I am sorry that you've been caught up in the whole "I can't have this done because of covid" dilemma like so many other people!  I would be really worried about you if you had the surgery right now, but I'm not the one who is suffering.

Are you finding any medication that is helping?  Is paracetamol enough since NSAIDs shouldn't be taken by tx patients?  Are you getting any advice at all from your doctors for what to do about the pain (besides epilepsy drugs)?

[UkrainianTracksuit]

Oh thank goodness that you finally had a decent medical appointment in that you went forward, rather than fall behind! But, yes, indeed, the corona restrictions really do muck up real resolution for your pain. You have to hold on!

Have you a follow-up with this particular doctor that takes your case more seriously?  I mention this only because it is good to retain connections with one that recognizes the hernia, supports the diagnosis of the other, and can ensure you will move forward.

If the medication that the previous doctor prescribed is Gabapentin, I would avoid it, not simply because it is known as "epilepsy" medication in its past life, but rather it causes much too much drowsiness than nerve pain resolution. (At least in my experience.)

[kristina]

Many thanks again MooseMom and Ukrainian Tracksuit for your kind thoughts and suggestions.

Unfortunately, the reason for the pain cannot be “sorted out” by operation right now and I have to continue to be patient and have to wait.

... and MooseMom, unfortunately I was not given any definite answers as such, but the reason for the pain and discomfort is, so I have been told, connected to the transplant-operation and I have seen the ct-scan which shows that some tissue is “broken” and a "gap" within the tissue can be seen and it needs to be operatively "sewn together" so to speak ... and it is true, the first diagnosis was a hernia, then a severed nerve, then a severed muscle, and etc. ... but to me it is not that important however it may be called, as long as the surgeon hopefully knows precisely what he/she is doing when repairing "it" and, as you can imagine, I am already a bit nervous about it all, because the transplant-operation has already left me with chronic pain and now I wonder, how can I truly hope that this next operation (whenever it might take place) is going to be alright?

... I have also asked at this appointment about the Epilepsy-painkiller-drugs and was advised not to touch any of it but to carry on taking Paracetamol whenever needed, within reason ... and to make sure not to "overdo" it. Fortunately Paracetamol is still “good enough” for me, because I have always been extremely careful about taking any pain-killers at all and because of that I don't need to take too much right now, as it has a powerful impact and certainly is "good enough"  for the pain... and hopefully the lock-down is lifted soon, so that urgent operations can be "done" again.

I also have another blood-test soon and later on another appointment with this very kind, thoughtful, assuring and helpful medic and he has already assured me that my pain and medical problems are not being "forgotten and left aside", so to speak.

Many thanks again Ukrainian Tracksuit for mentioning Gabapentin, which is called Pregabalin here and I was told not to touch any of it and just keep with Paracetamol in order to safeguard my kidney.

Many thanks again MooseMom and Ukrainian Tracksuit for your kind thoughts and suggestions, it is very much appreciated. 

[PrimeTimer]

So sorry you are going through this, Kristina! Pain does all kinds of bad things to us...for one thing, it causes us to lose sleep. It becomes very hard to heal from anything without proper sleep. Apparently certain cells in our bodies are replaced and/or repaired daily but only once we have reached REM (deep) sleep. I was once given a pain pill when I had a bad case of bronchitis. I didn't ask for it so asked the doctor why he was prescribing a pain pill. He said it was because I was coughing and choking so much and he wanted me to sleep and get rest so that my other prescription medicine could do it's work without my body fighting so much. Plus, I was very sore and achy from all the coughing and choking. I really don't do so well on narcotics because I am very sensitive to them but I listened to the doctor and glad I did. I got some rest and got better. I wish they could fix you up sooner but until then I hope you are able to get some rest and avoid too much pain. I am sure it is not easy. I'll be thinking of you. Take care! 

[kristina]

Many thanks PrimeTimer for sharing your experiences. I feel very sorry that you had to go through this and I do hope you can sleep and rest better now and hopefully your covid-vaccination has been sorted out as well?

Your observation is certainly "spot on", because sleep does not come easy when suffering from chronic pain and to think in a logical way becomes even more difficult after a sleepless night, because the pain certainly seems to “rule” everything and the pain itself also seems to cause enormous stress, which certainly has developed into another serious medical concern in my case...
 
Because of the constant discomfort, pain and resulting stress I don't think I had a chance to heal properly from "my" kidney-transplant two years ago and I also have become run-down in a big way which also comes from a lack of sleep and all that pain which causes constant stress as a sad "by-product". Unfortunately I am only able to sleep for a very short time and it does not feel as if I have reached any relaxation of deep sleep at all because I wake up much too often during the night ... or day...

Many thanks for pointing this out and I shall ask the doctors about this a.s.a.p.
 
I shall also make a point of taking a Paracetamol last thing in the evening and hopefully it may help me a bit.

I thank you again for your kind thoughts and helpful suggestion and take great care and best wishes from Kristina.

[MooseMom]

Kristina, the most important thing to know about good pain management is to not let that pain "take hold".  Treat it before it gets its claws into you.  Consider taking the paracetamol as directed whether you feel pain or not.  Take it every 4-6 hours (or whatever the patient information on the box says) even if you are pain free.  This makes an enormous difference in my experience, and hopefully it will do the same for you.

Take care!

[kristina]

Dear MooseMom, many thanks for your kind thoughts about good pain management which is very helpful and very much appreciated.
I am still in the process of “getting to grips” with it all, but I can already notice that it helps.
I thank you again for sharing your experiences and thoughts, it is very much appreciated. Of course, I still have to remain patient during this pandemic about having my urgent repair-operation done, but with good pain management the waiting becomes at least "somehow" bearable.
Many thanks again and take great care & best wishes from Kristina.

[kristina]

As much good as it's done for most of us, the medical profession, for some of us, seems to have done an equal amount of harm.  With your luck, Kristina, when they finally get around to the hernia, they may leave a sponge or some gauze in the wound, compounding all your problems with a massive infection.

Hello enginist and thanks for mentioning it ... and to be honest ... at the moment I can hardly think of anything else  ...

... and ... adding to that ... I am getting extremely concerned about my future-survival ... especially since there are only two possible outcomes left : the first outcome could hopefully be, that "they" really feel sorry for their past medical mistakes and want to make sure, that from now on everything goes in my favour and the operation is going to be a success ...

... but the second possibility could be ... that all humanitarian respect & humanitarian compassion towards patients has been lost already and "they" couldn't be bothered any more ...

... nevertheless, as a "chronic optimist" I still keep hoping for the best  ... 

[kristina]

... It really does not seem as if there is any hope to sort this out -  and, to be honest, after two and a half years of waiting for this chronic pain to be sorted out through a repair-operation after a kidney-transplant-mess-up, for which I have now been put on the "waiting list" for the operation, whilst being left with chronic pain after a kidney-transplant-operation-gone-wrong at the end of 2018 ... that seems to be it ... and I am now getting completely and utterly exhausted from the waiting for medical help and the pain ... and  ... I might even be on my way to finally "loose it", so to speak...

[iolaire]

Kristina sorry.

[PrimeTimer]

Kristina, I am so sorry about all this and the fact that you're not getting the care you need. This is awful! But please don't give up with trying to get someone's attention. Surely someone in their medical system can help you to get the surgery sooner. Maybe now with fewer Covid cases their time will be freed up. Keep making noise!