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

[UkrainianTracksuit]

… but I would not be surprised if it could also be connected to our compromised immune-system after the kidney-transplant? I certainly have felt very vulnerable ever since 

Yes, it does. There is no question about it. Information about increased risks was in my transplant information booklet. That whole area of the body is rife with naturally occurring bacteria that acts opportunistically because of immune suppression. There is an abundance of scholarly journal articles that discuss the links between transplant and UTIs simply because they are the most common bacterial infection experienced by transplant patients, and often puts them into hospital.

So, that's the baseline that unites all of us: transplant patients with an increased risk. From there, different factors come into the picture that separate us: age, physiology, fluid intake, general habits, sexual habits, any damage to urinary tract, hygiene practices. It's like trying to play whack-a-mole figuring out why one immunosuppressed person is prone to UTIs and another one does not get them at all or often.

How interesting about your penicillin issue and question. In regard to the Septra (also known as Bactrim), many transplant patients take this antibiotic 3x a week for the duration of their immunosuppression. Such as for me, it's been over 3 years of taking this antibiotic 3 times per week. Since the general population is given Bactrim/Septra for UTIs, it got me wondering, if the regular dose does something to prevent UTIs (besides its use as pneumocystis pneumonia prevention in tx patients) BUT for others, since the body is used to it on a regular basis, it loses its efficacy for UTIs? Or is it somehow contributing to once efficacy is lost?

Sorry, my thoughts don't seem fully formed! I'm sure some brain whizz of a doctor has already investigated this and the answer is somewhere.

[kristina]

Many thanks again UkrainianTracksuit. Your logical thinking moves into most inspiring directions and I am quite surprised to find out right now, that kidney-transplant-patients take antibiotics three times a week after their transplant-operation has taken place. I had no idea about this and I am quite surprised that it never occurred to me that there are different “variations” on the theme of a kidney-transplant! Who would have thought that … ? I have only been given antibiotics so far as a life-saver during the Sepsis-experience and right now because of the UTI.

I have no idea what to think of it all right now. Which of the two options is the best? Or is it individual? Which option is the better one? Is it to take antibiotics regularly in order to keep the body “relatively infection-free”, generally speaking, or, as in my case, only during an infection? Who does take the greater risks? Are there any medical answers?  Mind you, my transplanted kidney has been very fragile from the very start and "it" only functions about 20-30% in any case, so, perhaps I only have to take antibiotics when there is a serious infection taking place, because of the fragility of my transplanted kidney? It all seems very confusing ...
Many thanks again from Kristina.

[UkrainianTracksuit]

Hi kristina,

In regard to the 3x per week antibiotic protocol. I've encountered patients that took it long-term like myself or short-term (for a year after transplant). I think it up to the transplant centers to decide in this protocol.

We do not receive it for bacterial prevention in general, but for prevention of pneumocystis pneumonia or an infection caused by a fungus.

And I found the answer to my question if longer duration treatment with Bactrim?Septra leads to increased incidence of UTIs. It does not. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6918803/

More food for thought, I guess!

[kristina]

Many thanks UkrainianTracksuit for your kind thoughts and the most interesting information-link and it is certainly more food for thought! I did not hear about pneumocystis pneumonia before and the thought about all the transplant-risks involved plus the realization about our vulnerability is certainly an eye-opener...
Many thanks again for your kind thoughts and the information-link, it is very much appreciated and I send you my best wishes from Kristina.

[kristina]

Hello again ... and ... it seems as if I am given a chance to slowly find my way “out of the woods” with the professional medical assistance of a new transplant-specialist, who appears considerate and kind, has taken me on as a patient and has offered his medical assistance and ... he has already proved his honest professionalism. I am very glad and relieved about this positive new situation and it makes me feel hopeful again about my transplant-situation and hopefully this is now the right way forward “out of the woods” ... and ... hopefully it is also a good start for better luck in 2022 (fingers crossed) … 

[iolaire]

I hope everything goes better Kristina.

[kristina]

Many thanks iolaire ... I also hope that this time it is real and not just another illusionary hope, because I really could do with a break ... (fingers crossed) ...
Thanks again from Kristina.

[kristina]

Hello again ... and ... it seems as if I am given a chance to slowly find my way “out of the woods” with the professional medical assistance of a new transplant-specialist, who appears considerate and kind, has taken me on as a patient and has offered his medical assistance and ... he has already proved his honest professionalism. I am very glad and relieved about this positive new situation and it makes me feel hopeful again about my transplant-situation and hopefully this is now the right way forward “out of the woods” ... and ... hopefully it is also a good start for better luck in 2022 (fingers crossed) … 

... Over one month later, none of the promises of this new transplant-specialist have been realized and I am still waiting ... 

[PrimeTimer]

Hello again ... and ... it seems as if I am given a chance to slowly find my way “out of the woods” with the professional medical assistance of a new transplant-specialist, who appears considerate and kind, has taken me on as a patient and has offered his medical assistance and ... he has already proved his honest professionalism. I am very glad and relieved about this positive new situation and it makes me feel hopeful again about my transplant-situation and hopefully this is now the right way forward “out of the woods” ... and ... hopefully it is also a good start for better luck in 2022 (fingers crossed) … 

... Over one month later, none of the promises of this new transplant-specialist have been realized and I am still waiting ... 

kristina, I'm sorry you are still waiting to receive the care you deserve.  I wish doctors knew what it is like for a patient to have to wait so long. Maybe the Covid crisis has something to do with it. Everything seems to take longer these days and it's very frustrating. Please don't give up. Hang in there. I know you are strong. Take care. 

[kristina]

Dear PrimeTimer, and many thanks for your kind concern. I also wish that doctors could imagine, how difficult it is to wait for such a long time to receive medical answers and medical help etc. and my hope is, that I could perhaps receive some medical treatment soon and be without pain and … adding to that, it is also, on some days, becoming very difficult for me not to take my medical situation personally, despite the fact that over the past three years doctors have appeared to try and find medical answers for “this particular case”... and ...  I am still hoping ... 

Another problem is, that because of all these latter-day medical problems & medical experiences, i.e. my need for dialysis-treatments and then, after years of refusing to accept a donated kidney from my husband, I finally agreed and my husband's kidney-donation-work-up diagnosed him with bladder-cancer, just in time for him to survive several operations & anti-cancer-treatments etc., and then, after years on the waiting-list, I received my not so successful transplant-operation with a kidney from an 80-year-old deceased donor … and then my husband was being diagnosed with another cancer and needed new operations and treatments, whilst I was not yet able to help him and/or have a chance to start my recovery from the transplant-operation with yet hardly any quality of life and finally, my husband and I trying ever so very hard to get a little recuperation and both of us hoping for a little convalescence etc. But, being without family to assist us, we both seem to have ended up "battle-fatigued" and totally exhausted right now from our health-struggles … and … I would be so grateful, if a way could be found for us to know, how we could find some urgently needed energy to go from here and hopefully be able to build up again … ? 

[kristina]

Hello again ... and ... I have now finally started the complaints-procedure about the lack of medical care since my kidney transplant took place and hopefully "things" get sorted so that I can be referred to another hospital where I can hopefully receive better medical care, not only for the chronic pain I have suffered since the transplant took place, but also for my general medical care after "my" kidney-transplant and the rare diseases I suffer from. As an optimist I had hoped for much too long, that by writing/pleading with doctors/specialists etc. not only at the GP but also at the transplant-hospital where my transplant took place, could be the way forward, but unfortunately I was totally wrong. But how could I have possibly known? If there is no interest by doctors/specialists to assist and/or help a patient in need, there is simply no chance. For example, I was not contacted to discuss my blood-test-results and/or what could be done and/or how to medically approach this or that. At this transplant centre in London the procedure is as follows: a nurse takes some blood, I am being weighed, my BP is being taken, a transplant specialist asks me some questions and that is it. Nothing else. No answers to my questions, no phone call about my blood-test-results, no offer how to medically approach the chronic pain I suffer from since the kidney-transplant took place, nothing. It not only sounds very hopeless but is very sad indeed. Hopefully the complaints-procedure might bring some results? I doubt it, but I just have to try all the same ...

What really puzzles me very much is the following question: Why do doctors/specialists bother to spend hours and hours operating on a kidney-transplant-patient, when afterwards they appear as if they couldn't bother about the outcome of the transplant-operation and/or the patient's medical care and well-being after the kidney-transplant took place, especially when the patient remains to be very poorly and in a seemingly hopeless medical situation, and, instead of enjoying their new kidney-transplant, they are most often at home because they are too unwell to even get up and going? What is the point? 

... Not to forget the horrifically traumatic experience, when a kidney-transplant-patient is being brought - straight after their operation - into the situation to share a hospital-room with other patients who did not have a transplant-operation and, not surprisingly, the transplant-patient is instantly verbally being attacked by one other patient there ... and ... that poor transplant-patient is then being left on their own, having to fear for their life, being left without any help/assistance from nurses/doctors/specialists or any patient-organisations ... just after their transplant-operation ... and, most unfortunately, the trauma about this horrific experience does not get better, just worse, as time goes by... because no help or assistance was ever offered ...  very cruel ...

[cassandra]

Aw Kristina, I really hope you will get the answers/treatments you are asking for.


Good luck my friend. 


Love, Cas

[kristina]

Many thanks Cassandra ... it is just so very difficult to get answers and treatment which surely would not endanger the transplanted kidney ... and/or to be understood whilst communicating ... and ... we are certainly living in a difficult-to-understand world right now ... 

[MooseMom]

I am very glad you are starting the complaint process.  Your transplant experience is just so very different from what most of us in the US encounter.

Most of us do not really get follow up care from the transplant surgeon.  The surgeon does his thing and then our aftercare is relegated to a post transplant team headed by a transplant coordinator.  It is through the coordinator that we communicate any concerns or problems, and if the coordinator does not have a solution, then s/he turns to the transplant nephrologist.  If the concern or problem is actually due to the surgery itself, then the coordinator would likely turn to the surgical team for recommendations.

All post transplant patients are put into a separate recovery room that is fitted with special air filtration systems and would certainly never be given a room in the "general population".

I am well aware that the US healthcare system has deep ethical flaws seeing as it is run as a profit-making business.  Our health insurance system is a nightmare.  I don't know if the problems you've encountered are unique to your transplant hospital or if it is indicative of how the NHS "runs" transplantation in general.  What do you think?

[kristina]

Dear MooseMom and many thanks for your good wishes and  ...  sadly, there are no good news to report yet and, to be honest, I am getting a bit nervous ...

[kristina]

Dear IHD-friends,
As mentioned before, I have “gone through the complaints-procedures” but I have been informed that nothing untoward was found, and, according to the "final" complaints-procedure-results ... so, I have nothing to complain about… and…  since I was verbally attacked by another patient straight after my kidney-transplant-operation, whilst I was not even properly awoken from the anesthesia, that was also just bad luck... and if I had great difficulty to be medically looked after since and had difficulty to be medically treated ever since, that also was just " bad luck"...

Of course, I could now continue my complaint-procedure with the help of a lawyer, but I was already told that “such a case” like mine would take at least four years of continued concentration on this and nothing else, it would also cost lots of money (which I certainly do not have) and would also take lots of strengths and energy which I do not have either. So, as is not unusual and happens more and more often these days in "our system", the abusers win … and unfortunately, being now on record for having complained about what happened to me on our health system with me receiving no help and/or assistance plus coming across wrong people etc., “things” seem to look indeed very grim for my future healthcare and I have to give it my very best to continue as best as I can with my own and my transplanted kidney's survival ...

During the past few months, I was, at least, transferred to another NHS-hospital and hopefully “things” are going medically better for me? At least I have had my very first bone-test and hopefully the receipt of my anti-rejection-medication is going to be easier in the future as well?

But unfortunately, nothing else has positively happened and my medical situation has remained very trying ...

It was - finally - explained about the pains around the lower region, where the kidney-transplant took place, I have been suffering from over the past four years. These pains are most likely the result of some injured/severed nerves “in the transplant region” during the transplant-operation. Of course, it would have been helpful if I could have had the good luck to have this explained to me during the past four years because it surely might have created a better chance for me to live with less stress-resulting SLE/MCTD-flare-ups … but it was, unfortunately, not to be ...

Sorry to come over as a bit complicated, but at the moment I am also struggling with a severe UTI and have to take lots of antibiotics right now ...

I really wish I could find out where to go from here to make sure how to protect my own well-being plus the well-being of my transplanted kidney ... ? 

[MooseMom]

Oh, I am so sorry to hear all of this, Kristina!  You have had such bad luck in your post transplant years, and I regret this so much.  Bad luck plus incompetence plus insensitivity on the part of your original transplant team equaled a terrible time for you.  It's just not right that "fixing" this would require so much time and effort and money from you.  I know it's not the total answer, but you are right in saying that the best thing you can do at this moment is to look after your new kidney as best you can, which you are doing.

I know that the explanation of the pain you've been feeling for so long has been attributed to either nerve damage or a UTI.  Are you satisfied with the diagnosis finally being a case of damaged nerves caused by the surgery itself?  Are you satiified with any pain management protocol recommended by your new transplant doctor?

I am horrified to hear that you are suffering from such a severe UTI and have to go through yet another round of antibiotics.  Please take good care of yourself (well, you always do!).  I hope the antibiotics will eliminate the infection.

Are you and your new medical team satisfied with your current renal function?

[SooMK]

I'm so sorry Kristina. This is so unfortunate. It seems that if you were to try to continue working within the system regarding your complaints it would only increase your ongoing stress for no positive outcome. Perhaps it is best to determine what you are able to do to protect your transplanted kidney and your health in general and what you must accept for your own health and peace of mind.

I'm so sorry to hear about the serious UTI. I have done a lot of reading about UTIs as I had a string of them, one after another. The antibiotics are so hard on our system and of course there's the problem of antibiotic resistance. My neph gave me the go ahead to take probiotics (I know this is not the case with many clinics/nephs) which I think help with the GI impact of antibiotics. There are some urologists who are recommending and prescribing vaginal estrogen as a preventative for UTIs. This has worked well for me. So perhaps you can ask about it?

As always I wish you well.

[kristina]

Dear MooseMom and SooMK, your kind thoughts and answers to my questions are very much appreciated and I thank you very much for it.

... My course of antibiotics has been completed, but I am still not feeling any better and because of this I have started the process of enquiring to find out more facts and details about pro-biotics etc. Don't we have to make as sure as is possible that the milk used etc. has been pasteurized, if not sterilized because of a very fragile transplanted kidney function?

But ..  finding out details about this takes time, especially since different scientific findings seem to disagree with each other on just about everything about it and therefore their scientific findings appear very confusing and therefore, for a kidney-transplant-patient like myself, the question remains, how functional and beneficial yoghurt as a pro-biotic could possibly be, since the milk for any particular kidney-transplant-friendly-yoghurt has been pasteurized and/or sterilized?

So many questions and one's instinct seems to be forced to go on “red alert” to make absolutely sure to find out much more about all this from a doctor and make sure my little kidney function remains very much protected at all times and does not get compromised at any time …

Because my antibiotics were extremely “heavy”, it has been suggested for me to take it easy and next week I am going to have another blood test to find out if the infection has hopefully “vanished” by now and hopefully, all I have to do from then on is just trying to recover from this frightening experience.

Of course, “things” could have gone much better during and after my transplant, but it was not to be and at least I am still here to “fight another day”, so to speak and I shall give it my very best and shall continue to try my very best in order to keep my kidney functioning as happy as is possible for as long as is possible.

I thank you once again for your kind thoughts and hopefully my questions and thoughts do not appear too complicated, but I am still not quite well enough at the moment, and I am still struggling a lot with the aftermath of this infection ...

Many thanks again for your kind thoughts from Kristina.

[kristina]

P.S. :
https://www.msn.com/en-gb/news/uknews/the-human-cost-of-nhs-chaos/ar-AA14lo86?ocid=msedgdhp&pc=U531&cvid=50bbf011954146cbaa7f107908fc5b88

The above report-findings have been published today (21st November 2022) by "The Telegraph", one of the most integral UK-newspapers and the report seems to explain very clearly further reasons behind my own traumatizing experiences during my "after-kidney-transplant-time in hospital" and since  ...  and it also shows, how lucky I can consider myself to be still alive  ...  and hopefully our UK-healthcare-chaos and "things" connected with it all are hopefully going to get better ... soon ... because as it is right now the situation is very frightening for kidney-transplant-patients like myself with constant (chronic) health-vulnerabilities etc. ... and ...  the current situation comes over, as if our healthcare seems to have been "standing still" with one certain "amount of population" in mind, despite the fact that many, many more (how many thousands?) of people are living here right now and it "comes over" that our Healthcare-System seems to have become overcrowded with many more patients to care for and, as a result of this, it seems to have become over-challenged as well ... 

P.S. In order to have "my" recent infection diagnosed & treated I waited the first day in the hospital A&E for over 5 hours without a chance to see a doctor and was encouraged by the medical staff, who knew that I was fragile and had a kidney transplant, to go home because no doctor was there. The second day I waited 2 hours to see a doctor, only to be told by medical staff that I would have to wait at least another 6 hours, if lucky, to see a doctor and again I was sent home without seeing a doctor... and fortunately, on the third day of my waiting, blood was taken and, after waiting for a while, I was diagnosed with a serious infection which was already "on its way" to develop into another Sepsis  and fortunately the heavy antibiotics just about stopped its further development, just in time ...

[plugger]

Edit: I thought the post was going to be about the article and didn't read the whole thing (not enough coffee this morning), so I'm editing this post.  All I can say is - Jesus!!!  I'm very, very glad you lived to tell the tale!  I'm shocked that things were that damn bad!  Wishing you a speedy recovery!!

Article comment:
So much crappy medicine on both sides of the pond!  We've seen our fair share in the US!  I know back in the day kidney dialysis was on the  forefront of bad medicine here - I can't tell you what it is like now.  I'll let others have their say on that sort of thing.  It has been 22 years since my daughter was in a clinic!

Concerning healthcare in general, once upon a time I thought I was seeing a distant light in a faraway place, but as far as I can tell a basket has been put over that light (with people sitting on it).  Where did I see that light?  -Singapore.

 

[iolaire]

Sorry kristina.

[MooseMom]

Kristina, my son has had to go private for to get a consult and testing done for a very painful GI issue, so this article was very interesting to me.

My fear is that there is a real push to undermine the NHS, leading people to think it no longer works (because now it doesn't), and thus letting in American health care companies into the UK health care market.  The beloved NHS will become largely privatized, and if you think the bureaucracy is bad now (and it is, according to my son), just wait for the Americans to come in and really make a mess of things.

To American readers, just think of what's been done to the US Postal Service.  Undermine it, and then privatize it.

Thank you for posting this article, kristina.  I hope you feel better soon.

[plugger]

I did mention in that editorial I wrote that Medicare has the possibility of being a benevolent dictator - but what if it wasn't?  What if it turned out like the renal networks I remember - loaded with all kinds of corporate people there to look out for the interests of their corporate buddies?  I see the result not being good - like how the result for kidney dialysis hasn't been good.  With the renal networks, we've had the fox watching the hen house.  (that is a quote from somebody like an uncle to me, Dr. Kenneth Bays.  He was on one of the renal networks - he didn't like what he saw)

Anymore I'm more for a dispersion of power, especially after reading the book 'Goliath: The 100-Year War Between Monopoly Power and Democracy' by Matt Stoller.  It helped me realize what I would like to see with these dialysis companies - treated more like utilities.  Possibly small community owned clinics?  Possibly small non-profit owned clinics?  Heck, maybe even a few small for-profits!  Emphasis on small!  I'm old enough to remember Lynchburg Nephrology Virginia and their work with slow nocturnal dialysis (I think they got sold), they were a small for-profit.  I would see them all fighting to get on the renal networks - and watching each other! 

When it comes to health insurance companies here in the US, I'm not sure what the difference is between the US and Singapore's system.  I started to read an e-book I've got on my laptop - but then I got distracted by bright shiny objects.

However, that said I realize there is a need for some centralized power.  I'm also old enough to remember the civil rights battle between the Feds and Governor George Wallace.  When a state gets out of line, there has to be some clamping down - like how if a clinic got out of line, it would need some clamping down on.

Edit 11/24/2022:  I'll mention one bright shiny object I got distracted by lately was  Dr. Richard K. Bernstein's YouTube channel.  He is an endocrinologist, type 1 diabetic, and at 88 years old one of the last of his generation!  He also was responsible for the basal/bolus insulin treatment and was a major force in getting blood glucose meters into the hands of patients.  I've been watching a lot of his videos and also read his book.  I thought I would mention it just in case anybody has friends or relatives dealing with diabetes. (or themselves)

[kristina]

Many thanks again Plugger, iolaire and MooseMom for your kind thoughts, ideas and sharing your experiences ... and ...  MooseMom, I do hope your son recovers well from the GI-issue and I am very sorry that he had to “go private” in his desperation to receive urgent medical healthcare, instead of being able to rely on receiving medical healthcare from our NHS doctors and nurses … Unfortunately, these days many people here feel forced to “go private” in order to receive urgently needed medical healthcare and this puts lots of stress on so many people because "going private" is certainly not cheap and hardly anyone can afford it ...
Many thanks again for your kind thoughts and tips and sharing of experiences, it is very much appreciated and I would like to answer and write much more right now, but I am still battling with these terrible UTI-symptoms, despite the fact that my antibiotics have already been used-up and the quick-test already confirms there is no UTI, but the symptoms still remain and I feel very run-down and need to take lots of rests every day and hopefully I am picking-up again ... soon …
Thanks again and best wishes and kind regards from Kristina.