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

[UkrainianTracksuit]

Kristina, I know that it feels really awful and hopeless right now. So many hospitals have a backlog of surgeries so you have my utmost sympathies! Have you rang the surgeon in charge of your case (the one that finally gave the opinion that it is indeed a hernia) and asked what is the state of operations right now? I have heard that the UK is slowly starting to open up again, so it might be wise to ask or find out how that it is progressing in hospitals.

You have fought for so long. It may not not feel as though you have another battle left, but I believe that you do.

[PrimeTimer]

Kristina: I am wondering if you could ask your doctor if a TENS unit might help your pain. At least to act as a distraction from the pain while you wait to have surgery? 

[kristina]

Many thanks for your kind thoughts, Iolaire, PrimeTimer, UkrainianTracksuit and PrimeTimer, I very much appreciate your kind ideas and suggestions and I shall follow-up every suggestion.

... Perhaps I should have mentioned before, that over the past few years, especially over the past six years, when he wished to donate one of his kidneys to me, my husband was, through his donation-work-up diagnosed with bladder-cancer plus later on prostate-cancer as well and he had to undergo operations plus all the treatments etc., and, instead of being able to fully assist him and look after him, I have been left in constant pain, on painkillers 24/7 and "parked" on the sofa, unable to help ...  and everything has been a terrible struggle for both of us...

Because of all these experiences it has come as an ultimate disappointment, when I was told, that after two and a half years already in pain because of this untreated operation-incision-hernia, plus further medical problems with two narrowing "kinks" in the renal artery, of which only one has been repaired during three operation-attempts ... that despite my waiting for two and a half years for medical help, I was informed, that I have now been put on the waiting-list, as if I have not been waiting for the operation for such a long time already....

I have also felt more and more very depressed and aggrieved about this situation, because through our battles to keep my husband alive, we only had each other and in "my" transplant-centre I have mostly experienced aggravation, ignorance, no understanding and not even a kind, understanding word ... and it all has been building up over two and a half years time and by now it has become almost too much to bear, so much so, that to me, a formerly most positive and forward-looking-person, the thought of giving-up has already crossed my mind ...

[MooseMom]

Kristina, it is already apparent that you most likely will never receive that "kind word" of understanding from your medical team, and while I am really sorry about that, it is time to seek solace elsewhere, and that is here.

This may sound trite and gooey, but IHD is, after all, a "support group".  We cannot provide the medical help you need, but we can provide many kind words.

I've always found it important to stich together my own support quilt.  I get one kind of support from my clinic, I get another kind of support from groups like this, and I get yet another kind of support from my friends and family.  From my clinic, I expect medical and professional support.  From groups like IHD, I get that support that comes with conversing with others who are in the same boat and who KNOW what it is like.  From my friends and family, well, they might not know their potassium from their phosphorous, but they don't have to because they love me and don't need to get "into the weeds".

I think it may be time to stop expecting emotional support or understanding from your medical team.  Clearly, they are not able to provide this, and to keep hoping for it is to cause you more distress.  Focus your energy into pressing them to give you the earliest time slot possible for your surgery.

You and your husband are clearly a match made in heaven, and while your husband's health concerns are extremely stressful,  I know that he is the perfect person from whom you can rely on the utmost emotional support and understanding.

I am thinking that, as Prime Timer suggested, it may be time to find a better way to manage your pain whilst you are awaiting surgery.  I hope you don't mind, but I happened to mention your situation to my husband yesterday, and he wondered if perhaps hypnotherapy might help.  I know that may sound a little "out there", but I've read that it does in fact help some people as part of an integrated strategy.

It seems to me that your pain is the most pressing issue at the moment.  Something has to be done to manage or relieve this pain.  Have you spoken to your GP about specific treatments or ways to manage it?  I'm surprised you can function as well as you do.  Chronic pain, no matter the cause, is a real problem for many people.  It is draining and enervating and must be dealt with.

I am also concerned about your mental/psychological health.  Dealing with pain is one thing, but dealing with these feelings of hopelessness, depression, and anger is the other half of the battle before you.  Not knowing for how long you're going to have to live this way must be emotionally damaging.  The mental and emotional health of patients like yourself is all too often ignored.  Perhaps you can have a word with your GP about this, too.  What do you think?

[kristina]

Dear MooseMom and thanks for your kind thoughts. Your letter made me re-think, because, what I really tried to convey is that I miss the humanitarian touch of culture and refinement, which always shows itself in little gestures and a kind word now and again, as was experienced “in the old days”, when medicine meant a little more than just “a job” and most medics were noticeable by their culture and class, which in return had a good influence on vulnerable patients, as it enhanced their trust and believe to quickly recover and get better...

As a creative dreamer in art, painting and music, it is - honestly speaking - very difficult & almost frightening for me to meet some of the medics  ... and some encounters came over as being very frightening, because, since I suffer from very difficult to understand genetically inherited diseases i.e. SLE/MCTD plus variations, plus medical problems with the kidney-transplant, this difficult combination seems to require clever medical thinking and intelligent medical combining-skills etc., especially since the incision-hernia-pain continually induces further SLE/MCTD-flare-ups ... and so, as you can see, I have been "going in circles" as a result for the past two and a half years ...

... To help me with pain-management, I have tried hypnosis at different times in my life, but unfortunately I was assured every time, that I am one of those unfortunate rare cases who cannot be hypnotised, because it seems, that my (subconscious?) mind & instinct are strongly against such a procedure and so, unfortunately it does not work for me as a pain-management ... Because of this problem I had an idea and wrote to the Ministry of Defence about their pain-management-training for their own "special cases" etc., but unfortunately they have never answered my letters. It is really sad that “they” cannot assist medics to train chronically sick patients in chronic pain to withstand pain through special programmes etc.

Of course, “my” constant pain is very difficult to take for such a non-ending-long time, and unfortunately it seems to be happening at the wrong time as well and whilst it took such a very long time to be diagnosed  it makes me feel frightened and totally lost, especially since this enduring pain has been going on for over two and half years ...

[kristina]

... Today my kidney-transplant-hernia-repair-operation should have finally taken place, but unfortunately it has been cancelled by the NHS-Management of "my" district. Unfortunately, they are not medical, but only managerial, and therefore they could not bother about my welfare or the fact, that I have been left in chronic unbearable pain since "my" kidney transplant took place in November 2018. In the UK, hospitals are unfortunately not “run” and/or managed any longer by doctors who are medically trained enough to evaluate the urgency of certain operations, but hospitals in the UK are these days “run” by managerial people , who have no connection or any idea, how to evaluate a kidney-transplant-gone-wrong, which has left me in unbearable pain since the transplant took place in November 2018.
As a patient in urgent need of this operation, I honestly have no idea how to go from here because my GP/doctor/specialist have no powers to go forward and help or assist me by urgently repairing and operating this painful transplant-incision-hernia, which has made my life a total misery since November 2018. I regret very much, that I was naive enough to have welcomed the idea of going ahead with this kidney-transplant in November 2018, because, apart from this total misery and total despair it has brought me nothing at all. A life spent in despair and total misery after a kidney transplant is not worth much, is it? 

[iolaire]

Sorry kristina.  Is it a permanent denial/cancelation?  Did they give reasons? 

Here in the US insurance companies have the power to not approve procedures but there is an appeal process, and when all that fails other than lawsuits the last backup is to try to get media coverage from some sort of consumer advocate or medical reporter intreated in the case.  Medical systems behaving badly can make good news because most people can identify with the story.

This site lists BBC medical reporters:
https://en.wikipedia.org/wiki/List_of_BBC_newsreaders_and_reporters
if you look at one of their stories, for example this one by Fergus Walsh you might see some sort of contact info, in this case a twitter handle
https://www.bbc.com/news/health-55308216
A pointed tweet tagging the report and NHS might peak someone's interest, for example:
@BBCFergusWalshon @NHSuk botched my kidney transplant surgery 3 years ago leaving me in unbearable pain - NHS-Management cancelled surgery to try to fix it over my specialist's recommendation.

You could then say daily move to the next reporter/editor with similar messages each time tagging @NHSuk hoping that either NHS or a report gets interested in your case.  And you could move on to other publications as well using a similar method.
The https://twitter.com/NHSuk says "Official site of the English NHS. Monitored weekdays 9am - 5:30pm".

[MooseMom]

Will the surgery be rescheduled?  What happened?  I know that covid is making a comeback in the UK; is this the reason your surgery was cancelled?  I don't understand.  I am so sorry.

[kristina]

Many thanks Iolaire for your kind ideas and many thanks MooseMom for your kind thoughts ...

Unfortunately I was not given an explanation as to why my urgent transplant-repair-operation was cancelled and unfortunately I was also not given another date for my urgently needed repair-operation either.

The fact that "they" did not explain or help so far. is perhaps due to the fact, that it is a specialist hospital, very strongly renowned for their very strong  research-connections? ... and perhaps ... that may be the reason, why my complaints about this chronic pain, and my having problems to sleep at nights because of the pain which almost makes me housebound, were so long ignored by these transplant-researchers ? Also, the fact, that the pain causes a chain-reaction with many SLE/MCTD flare-ups was unfortunately also ignored...

Perhaps "they" also may be a bit over-challenged, not only because of Covid, but also because currently the whole set-up at the transplant-clinic almost appears like a huge transplant-factory plus its 3-monthly conveyor-belt-after-transplant-blood-result-research-centre?

Why I am writing now like this is possibly the result of my utmost frustration and constant pain plus being totally exhausted after all these sleepless nights for the past two and a half years -  and therefore my thoughts may come over as a bit totally exhausted, and perhaps even a bit unkind, but I dare-say, being condemned to two and a half years of total misery, chronic pain plus being almost housebound, is extremely disappointing, especially since such an after-transplant medical let-down was not mentioned before the transplant, when at all transplant-seminars I was literally “sold” the idea, that, having a kidney transplant would change my life and future for the better. My husband and I  have been to these Transplant-Seminars before the “transplant-event” and we were promised, that our life would instantly get better after my kidney-transplant and so we were “sold” this idea in a big way and now, two and a half years later, I am worse off, than I ever was during “my” pre-dialysis years and "my" dialysis-years...

As a result of this terrible horrific medical let-down and understandable resulting frustration, I have right now, today, written many pleading letters, asking for urgent help in this terrible dilemma and hopefully there might, hopefully in the not too distant future, be some light at the end of the tunnel...

Many thanks again from Kristina.

[UkrainianTracksuit]

Hi kristina,

I truly hate reading such distressed messages from you but your feelings are totally legitimate under the circumstances. Life with chronic, severe pain is bad enough and it is mentally exhausting when procedure to rectify the issue seems so out of reach at this point.

I hope that you are contacted soon for a rescheduled date for your hernia repair surgery. Perhaps the one sliver of light (at least the case here) that procedures that were cancelled due to covid are rescheduled first in the pecking order. I hope the same applies there. As well, the state of your health should be a consideration so that you receive priority.

Please take and keep us updated.

[MooseMom]

I am so sorry, Kristina.  Chronic pain like what you are experiencing is truly soul destroying and warps every aspect of life.  I am guessing that paracetamol is not helping as much as you'd like?

No wonder you are so distressed to the point that you regret your transplant surgery.  Your life SHOULD be so much better.  I regret your surgeon was so incompetent.

[SooMK]

I'm so sorry to read this Kristina. It sounds like you are in a nightmare and nothing you do seems to get you out of it.

[kristina]

Dear UkrainianTracksuit, MooseMom and SooMK, and many thanks for your kind compassion, understanding and sympathy. It is true, that I have been going through a long lasting permanent nightmare, which is made worse since my husband also goes through a similar nightmare with his cancer-battle and it also makes me feel very bad, that I cannot assist him much or look after him as much as he needs to be looked after. This weighs very heavily on me as well, especially since he was always on my side at all times, not only practically by looking after me, but also by his kind encouragement through my dialysis-years.  But hopefully, there might be a little light "flickering a little bit" at the end of the tunnel, especially since I have been put on top of the waiting-list. Please keep your fingers crossed for us a little longer.
Many thanks again from Kristina.

[MooseMom]

At the top of the waitlist?!  That IS a flicker of hope!  I'm very pleased to hear this!

I know your husband understands that you would move heaven and earth for him if you were able to.  He sees your daily struggles and loves you enough to not have unreasonable expectations of you.  I'm just so sorry that you've both been subject to such terrible timing, that both of you need swift medical attention during a pandemic.   

[kristina]

Dear MooseMom ... unfortunately right now I have start from the very beginning again ... as if I had not already been waiting for over two and a half years ... It is very devastating and extremely demoralising to find oneself in a situation, when one is forced to rely on the integrity of doctors ... and finds nothing but empty words and nothing else  ...

[UkrainianTracksuit]

Hi kristina,

I am not trying to be nosey, but what do you mean that you have to start from the beginning again? Are your medical imaging from the diagnosis from the hernia lost or you need to redo them? Are there more appointments?

What a shame and I hope it is just a misunderstanding on the medical side of things.

[kristina]

Hi Ukrainian Tracksuit and thanks for asking & I am sorry that I could not answer earlier...
The reason for my need to start again “from the beginning” is, because of my referral to a different hospital to get this - meanwhile legendary - transplant-incision-hernia “operated away” and repaired and my hope is, that in the future I might be given a better chance for a quality of life with the medical help in the new hospital ...  Of course it is a very sad fact that I have wasted over two and a half years after my kidney-transplant-operation, waiting for medical help in such misery and pain. After all, a kidney-transplant lasts “usually” around ten years and it is so sad, that I have wasted already two and a half years already ... but ... I am very glad about my referral to another hospital and, to be honest, I would have asked for the referral a long time ago ... but, because of – for me - a very good anti-rejection-medication received at “my” original  transplant-hospital,  I felt obliged to remain there, being loyal, but I am now -  medically speaking - in such a "derelict" state of pain and misery, that I couldn’t care less any longer and don’t mind to start anew again at another hospital with hopefully better luck coming my way ... 
Please keep your fingers crossed for a little longer and I send you and your husband my kind regards again from Kristina.

[Hereware]

Hus! Hang in there. Everything will be okay.

[frugallyzing]

Trust that everything's gonna be okay and that these all happens for a reason. Life is good if you choose to look at it that way..

[kristina]

Many thanks Frugallyzing and Hereware for your friendly and encouraging thoughts, it is very much appreciated.
... At the moment I am in the process of recovering from a terrible Sepsis, which instantly made my kidney-function deteriorate and it also affected my heart in a bad way and left me with a terrible pressure in my chest-region at the time. But I was very fortunate when the Ambulance-Paramedics brought me instantly to the nearest Accident & Emergency-Hospital, not only because of my high temperature (at its worst it was 39.9), but also because of the deterioration of my transplanted kidney-function and fortunately I instantly received the very best medical care possible from then on. Because I was so fragile, I was kept in an isolated room and the doctors were extremely knowledgeable and attentive, the nurses did their very best and my medical care was conducted in a very professional and encouraging way and the medics at this A&E Hospital were also in contact with my Transplant-Hospital as well. It all went very well for me, there was no unnecessary excitement, I was kept as calm and as well as is possible and this wonderful experience did a lot to restore my faith not only in medicine, but also in the medical care of doctors and all of the medical staff were excellent. This experience was so good, that it practically overshadowed all the bad feelings about former unfortunate medical experiences before etc. Even the “hernia-pain” was attended to and turned out not to be a hernia at all, but an unfortunate side-effect of the kidney-transplant, which fortunately has finally started to subside right now and this makes me feel very much better, because there is no pain anymore.
All in all, I am happy to report this very good news and even though I am still on heavy Antibiotics right now ... and it might take time to recover from the Sepsis, I certainly can see the light at the end of the tunnel…
Please stay well and I send you all my best wishes from Kristina. 

[UkrainianTracksuit]

Oh my goodness, kristina!

What an update! 

Firstly, and most importantly, I hope that your recovery from this awful sepsis is smooth. Wishing and hoping (I know that sounds so useless) that the heavy antibiotics do their job. Sepsis is nothing to sneeze at.

What is the status of your kidney now? Recovered? Tell us when you can!

Still, I am so very pleased to hear that you experienced top-notch positive medical care! It must have been caring and wonderful to change your opinion and restore your faith in it all! That's excellent.

As well - and this is a big one - I am so glad that your "hernia pain that is not a hernia" has been resolved! You can begin to have a better quality of life once you are all settled from this awful sepsis. Do you know what the actual cause was - this particular side effect? No more waiting for a surgical date, especially for an unneeded procedure!

Take care and get better real soon!

[iolaire]

I’m glad the infection has some positive outcomes Kristina.

[MooseMom]

Oh, gosh, Kristina.  Sepsis is so frightening and dangerous and more common than most people realize.

I am so relieved that not only did you recover but that also the care you received has restored your faith in doctors.  I know you've had a really tough time with your transplant team and others who have overseen your care.  What a scary way to get a second opinion about your "hernia"!  I'm just astonished by this story.

So, what's next?  Rest and recovery and a follow up appointment, perhaps?  Like UT, I'm wondering what exactly the "side effect" from your transplant actually is?  This is such a mystery!

Thank God you're better!  What a relief!  Thank you for letting us know.

[SooMK]

Whoa! It's an ill wind that blows no good, I guess. What a strange twist to your story. Wishing you the best going forward. Please keep us updated.

[kristina]

Dear Ukrainian Tracksuit, Iolaire, MooseMom and SooMK and many thanks for your kind thoughts and understanding.

Sepsis is surely a very frightening and life-dangerous experience and before that I had no idea about it whatsoever.

The cause of “my” Sepsis is unknown and it was only when my quickly high-raising temperature showed up, that my life was noticeably getting in some danger, especially since my kidney function became detectibly “lazy” and as a result of that I put on weight, because of a noticeable water-retention. I was also asleep most of the time and fatigued-drowsy and could not get interested about anything around me.

Kidney-function-tests during my Hospital-stay showed, that my kidney-function suffered a lot during the Sepsis and I needed constant antibiotic treatments and I also needed to drink lots and lots of water, then more water and again lots of water etc. and slowly the water-retention started to get a little better bit by bit and my kidney-function started to become a little bit more active again as well.

I feel extremely lucky that I received so much positive medical care and attention during these desperate days and the kind re-assuring medical attention during all of the time made me feel as secure as was possible in this life-dangerous situation and I am very grateful for it.

Such a Sepsis-experience is very upsetting, because Sepsis itself “is very slowly creeping up on the body” and raises the temperature at the same time and this totally disabled me as a result, but before this catastrophy happened, there were no warnings and no symptoms whatsoever. It was only when my temperature raised so quickly to such a very high degree in such a speedy way, that it became obvious that there was something life-dangerous going on.

I am still very fatigued and exhausted from this terrible Sepsis-experience and its urgent constant antibiotic treatments days and nights and I feel certain, that I need much more time to try and recover from it and I also try very hard to get a bit stronger, because right now I am still very "wobbly" on my feet ...

Many thanks again for sharing your kind thoughts and I send you my kind regards from Kristina.