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Author Topic: My pre-dialysis-days have finally come to an end...  (Read 33863 times)
SooMK
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« Reply #300 on: December 11, 2020, 05:05:37 PM »

Kristina, I would really want the doctors to tell you plainly--we can't do anything for you, we do see this sometimes but we don't know why it happens. I don't accept that this is the best that can be done. Perhaps that is the situation. Perhaps you do have the condition in the article. But perhaps you don't. Perhaps you have a condition that can be treated. This study took place 2011-2013 which is kind of a long time ago in medical science time. I agree with enginist that your clinic seems to be failing you. They aren't listening. I encourage you to keep asking for help. There's no one else who knows how intense or mild our pain is. You have more to lose by giving up than you do by continuing to speak up.
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SooMK
Diagnosed FJHN/UKD 2009
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kristina
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« Reply #301 on: December 12, 2020, 04:42:49 AM »

Many thanks for your kind encouragements, Hereware, enginist and SooMK, it is very much appreciated.

When I meet the transplant-specialists, I shall ask all the questions I need so urgently being answered and I won't give anyone another chance to dismiss me without any helpful medical way forward ... and I shall also ask, whether my transplanted kidney is by any chance too large for my small body and might "squeeze" other organs with the result of giving me constant pain?

I feel that by hoping for the best for so long and trying ever so hard to avoid any conflict over the past two years, I have given away too much "leeway" and certainly pay the penalty by ending up in constant pain and my diplomacy and patience have finally come to an end right now ... and it is very unfortunate that vulnerable patients in constant pain like myself are being forced to fight and fight, instead of receiving medical help and assistance and kind understanding in the first place.

Many thanks again for your kind encouragement which is very much appreciated and please  take great care and stay as healthy as can be in these difficult times and I send you my kindest regards from Kristina. :grouphug;

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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
MooseMom
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« Reply #302 on: December 12, 2020, 11:43:14 AM »

No wonder you are angry and upset!  Being in constant pain really saps your energy, and I am ever so sorry you are having to live with this.  You have always been a strong advocate for yourself, and I know you will continue to be so.  You have every right to have better care.  You shouldn't have to fight for it.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
enginist
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« Reply #303 on: December 13, 2020, 09:32:32 PM »

You should get a kidney scan, which can diagnose a multitude of issues, including the relative size of the transplanted organ.. 
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kristina
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« Reply #304 on: December 15, 2020, 01:26:51 AM »

Many thanks again MooseMom and enginist for your kind thoughts.

In the not too distant future I shall have another kidney scan and (again) see the specialists again ... and this process has been going on for the past two years again and again ...

The specialists always only order the kidney itself to be scanned (that seems to be the only concern), but the pain I am experiencing  is actually underneath the transplanted kidney and that fact has not yet been considered ...

The other problem is that the scanning-department only does exactly how the order is worded and no-one seems to listen to me, i.e. when I mention again and again and again, that the pain I am experiencing is actually underneath the transplanted kidney  ...  and unfortunately that precise "region" has so far never been ordered to be scanned ... and so the problem has been turned around ... and around ... and around again for the past two years ... without me getting a break, but the specialists are always re-assured that the transplanted kidney is still functioning and that seems to be the only concern.

Not only "my" chronic pain but also my frustration is becoming unbearable, when I feel like dealing with "functioning robots" every time I have to go to this "kidney-transplant-after-care- department" ... and I so wish it could be exactly that ... but unfortunately it seems to appear like a kidney-transplant-research-department ...  :'(
« Last Edit: December 15, 2020, 01:34:43 AM by kristina » Logged

Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
MooseMom
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« Reply #305 on: December 15, 2020, 10:12:06 AM »

kristina, I just don't understand how your medical team continues to dismiss your concerns.  The patient is often the greatest source of diagnostic information, and for your team to not listen to you is like ignoring blood work results.  It's just so unprofessional and ignorant.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
enginist
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« Reply #306 on: December 15, 2020, 05:07:08 PM »

It sounds like a novel by Franz Kafka.
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kristina
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« Reply #307 on: December 17, 2020, 04:04:05 AM »

Many thanks again MooseMom and enginist, I am very grateful for your kind thoughts and ideas.

Franz Kafka?  O no ! ... His thoughts and stories are a definition of depression itself and it is even more depressing to visit his home in Prague ...

... I read some of his his novels during my studies of literature and for me it is it not particularly healthy to come across his novels and read them, because of the awful experience of depression "one" comes across and "one" can easily notice whilst reading his stories ... But there again, his life-story was extremely terrible anyway and he had not much luck, except for being with the best of friends who always looked after him whilst he suffered from tuberculosis... His friends even insisted and made sure that his work would certainly be published ...  But nevertheless, he is one of the very few writers I don't feel is "healthy for the mind" to approach, especially for people with health-"inflictions" i.e. ESRF etc...

... But I certainly can see the point you are making by "watching" my experience of going around in circles, backwards and forwards and backwards again etc., whilst trying to get diagnosed with this unbearable pain and it does honestly feel quite a bit "Kafkaesque".

But ... I saw the medics again and was completely checked-up with CT-scans around the painful "spot" etc. and finally I saw an important and very experienced surgeon who finally diagnosed that I suffer from a painful hernia which is very difficult to medically "spot" and diagnose and therefore needs to be studied at the CT-scan by a very experienced surgeon, which it finally did. (Exit Kafka)

So, with my recent thoughts about medics in general and some medics in particular, I stand corrected !
 
At least the terrible pain has found a logical medical explanation and I am so glad that it is not connected with the transplant itself and/or anything to do with the "big C" etc. 

I was told to take it very easy and not to walk too much and/or not to carry anything heavy etc. and strangely enough I already feel a little better because at least I know now what I am dealing with and that knowledge takes the heavy weight of this long-winded terrible uncertainty away.

I was also told, that there is unfortunately not much of a chance for an operation to repair the hernia right now because of the latest "spike" with many more Corona-Virus-cases and because of that all the hospital-beds are needed at the moment, but I shall be operated on as soon as is possible and I shall see the medical team again early next year etc.

Many thanks again for your interesting thoughts MooseMom and this interesting comparison enginist, but please don't read too much of Kafka at the moment, whilst we all go through this terrible sad and depressing Corona-Virus-time ... I only mention this, because I think it takes lots of strengths for all of us to get through this terrible Corona-Virus-time and what is happening ... at this moment ... and reading Kafka only takes much needed strengths away ...

Many thanks again and take great care and many thanks again from Kristina. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
MooseMom
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« Reply #308 on: December 17, 2020, 08:37:56 AM »

Oh, I am so glad that you got the answers you needed, and while I am sorry that you may have to wait a while for surgery, I am thrilled to know that you've been thoroughly assessed!  Well done for persevering!  Please let us know when you'll be able to get your surgery at last.  Thank you very much for the update as we were all concerned.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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« Reply #309 on: December 17, 2020, 02:02:31 PM »

This is great news! I hope you don't have to wait too long for your surgery and can look forward to a good post-transplant life.
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SooMK
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UkrainianTracksuit
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« Reply #310 on: December 17, 2020, 02:04:07 PM »

Hey kristina!

While I am not happy to hear that you have been diagnosed with a hernia, I am pleased to know the source of your constant pain has been pinpointed AND that there is a solution. Indeed good news and very understandable why your shoulders must feel lighter!

I hope this pandemic finally gets under control at long last and you can be scheduled for surgery soon! Take care!
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enginist
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« Reply #311 on: December 17, 2020, 05:01:17 PM »

I toured Emily Dickinson's house, and Beethoven's.  I know that you, Kristina, have visited the graves of your favorite writers, composers, and painters.
« Last Edit: December 18, 2020, 12:29:09 PM by enginist » Logged
PrimeTimer
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« Reply #312 on: December 20, 2020, 05:51:12 PM »

Imagine that, a hernia of all things! But I am very glad that you stuck with it and refused to give up without getting an answer, Kristina. Hope you are able to rest and avoid anything strenuous while you heal. Sometimes hernias take time but sometimes just a couple of weeks or so. Be careful and be kind to yourself. Please let us know how you do.
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« Reply #313 on: December 24, 2020, 03:10:43 PM »

Hello again,

Many thanks again for your very interesting and kind thoughts MooseMom, SooMK, Ukrainian Tracksuit, enginist and PrimeTimer, it helped me a lot to feel hopeful again and perhaps the operation might take place as soon as is practically possible, so that I can recover from it all and with a bit of luck I might hopefully get a chance to concentrate on my future and perhaps continue with my art and career again? 

... Who would have thought, that it could be as complicated as that ...

... I also would like to wish you all a Happy Christmas-time and please take great care and best wishes from Kristina.  :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
kristina
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« Reply #314 on: January 23, 2021, 07:22:17 AM »

... There also seems to be something going wrong with my hearing deteriorating and after a thorough hearing-test I was told that it must be connected to the anti-rejection-medication I am taking, since my hearing is not altogether deteriorating, but only certain parts, which is not the "usual" development of hearing-loss ...
So, now I am inflicted with two predicaments: 1) constant pain 24/7 for which I am forced to take painkillers every day and 2) a development of hearing-loss.

I shall see this Transplant-Clinic one more time to find out what they have to say and if this meeting is again unsatisfactory without me getting any answers, I certainly have to go most urgently elsewhere ...

... Just to think that I was promised that I could "finally go back to my work/career" after a transplant and in fact my whole life has become worse after "my" transplant, despite me doing everything right... and to think that this nightmare has been already going on for over two years without me getting any medical help and/or assistance is just uncomprehensable...

P.S. Adding to my frustration is the fact added, that my upcoming appointment with the Professor, who finally diagnosed that I have been suffering all the time from a "hernia at the incision of the kidney-transplant", I sadly must add, that this forthcoming appointment has sadly been cancelled and no other appointment has been offered, but, most frustratingly and very sadly, no explanation as to the "why" has been offered...  ???
Talking about communications "talking place" between medics and patients ... ???
« Last Edit: January 23, 2021, 07:40:17 AM by kristina » Logged

Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
MooseMom
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« Reply #315 on: January 23, 2021, 08:52:47 AM »

Oh, Kristina, you've really been through the wars, and I am so sorry to hear about your latest affliction.  I think it is the tacrolimus that can affect your hearing.  In fact, I have developed tinnitus, and I am not sure if it is because of the tac or if it is because I am just getting older.  I did speak to the transplant pharmacist about it, and she said that if it got worse to let them know.  Well, some things you just have to live with, and as I am not sure there is anything to be done about it, and as I seem to not really notice it often, I've chosen to do nothing.  That said, I am glad you will be speaking to your clinic about it.  I am very curious to learn what they have to say and if they have any suggestions or might want to change your medication.

It must be very frustrating to have these problems pop up, problems that really (thankfully) have nothing to do with how your kidney is functioning.  These "small" issues can add up to real misery.

I hope you can get your hernia op done more quickly, and I am hoping that the covid hospitalization rates will decrease enough in the UK so that your hospital can see to you.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
SooMK
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« Reply #316 on: January 23, 2021, 01:01:19 PM »

Oh no Kristina! I just don't understand this except, of course, the way covid is really trashing health care these days. I hope you can get some help soon. I would love to hear that you no longer from such ongoing pain. While I knew there can be a correlation between kidney disease and hearing loss, I did not know that hearing loss was associated with tacrolimus. My hearing has worsened the last few years and I have had hearing aids for a couple of years. Like so many assistive devices they are a poor second to the real thing. I don't think my hearing loss is related to tac though because I suspected for quite awhile that my hearing wasn't as it should be.

I hope you will soon have an appointment scheduled.
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SooMK
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MooseMom
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« Reply #317 on: January 23, 2021, 01:20:13 PM »

I had not known about the hearing impairments that could come from tac, either, and I don't know what made me think to look at the patient information pamphlet, but yep, there it was.

https://www.mayoclinic.org/drugs-supplements/tacrolimus-oral-route/side-effects/drg-20068314#:~:text=Less%20common.%201%20Blurred%20vision.%202%20chest%20pain.,6%20ringing%20in%20the%20ears.%207%20sweating.

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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
kristina
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« Reply #318 on: January 23, 2021, 03:06:53 PM »

Dear MooseMom and SooMK ... and ... many thanks for your kind answers and provided research-results about Tacrolimus. All the described possible Tacrolimus-side-effects look really terrifying !

I remember suffering at one time after "my" transplant very badly with swelling of my feet and lower legs and fortunately (touch wood !!!) that problem has meanwhile "faded away" into the background a bit, but the hearing problem is indeed very concerning, especially since I am very much "into music" and playing the pianoforte on "my good days" whenever possible.

Furthermore, the incision-hernia-pain at the lower abdomen has been really getting on for much too long by now and I am very frustrated about it, especially since it could have been diagnosed over the past two years and could therefore have been sorted out long ago, especially before these Covid-restrictions, since no operations are possible right now. Perhaps this is the reason for my exasperation, that it could have been so easily sorted out so long before ... :'(

I am very sad about your own hearing problems MooseMom with developing tinnitus, and the fact that you cannot be sure if it is because of the Tacrolimus or not and hopefully it can be sorted out and hopefully then it could perhaps be getting better? Do you experience the hearing-problem in a sort of constant way? I wonder, because with me it is particularly the Tenor-tones giving me problems, whereas I have no problem with Bass and Soprano-voices and my hearing-test proved, that I have no problem with the usual "getting older" hearing problems, because my only problems are when hearing Tenor-voices because of the certain "Pitch of the Tenor" if that makes sense?

Hello SooMK I also feel very sorry for your hearing-problems and perhaps they are also connected to Tacrolimus? Have you had a hearing-test? I mention this because I was reassured at my hearing-test that my difficulty is definitely not connected to age etc, but to my medication, because I only showed problems listening clearly to tenor-voices...

Many thanks again MooseMom and SooMK for sharing your experiences & thoughts, it is very much appreciated and I send you my best wishes from Kristina. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
iolaire
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« Reply #319 on: January 23, 2021, 04:12:11 PM »

Kristina Sorry you are experiencing these worrisome problems.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
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« Reply #320 on: January 23, 2021, 05:41:27 PM »

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.
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PrimeTimer
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« Reply #321 on: January 23, 2021, 06:42:59 PM »

I am sorry to hear about your hearing now being affected, kristina. I agree, I think everyone is right about it being the Tac that is affecting your hearing. A lot of medications have side effects that affect our hearing and even our vision. I think I can relate a little. My own hearing seems to be affected by the Prednisone (steroid) I have to take for my breathing problems. Or it could be the oral chemo drug I take. And my vision has become blurrier. I say blurrier because I have allergies to pollens that also affect my eyes/vision.

I don't expect people to feel the same way I do about this but, when I think of how much these drugs are helping me (I think), then I try not to worry too much about the side effects. When I think of how serious my illness is and how much worse it could get, I guess I sort of dismiss some side effects as being tolerable compared to the worst happening or what I've already gone thru. I had a good talk with my doctor the other day. Well, it was a telehealth call but better than not getting to talk to him at all. Anyways, he said sometimes we have to weigh the benefits and risks of a drug and sometimes the benefits outweigh the risks. There are a lot of things I am struggling with these days that are fairly difficult to live with but I am trying to "keep my eye on the prize". My hope is to improve so that I may have a better quality of life. What that will look like I don't know but I am reaching for it. What helps is coming on here and being amongst other warriors if you will, that each have their own struggles, concerns and goals. You and other members here on ihd actually have helped with my own set of challenges. For that I am grateful.

Kristina, I hope you will continue staying on-top of your health issues like you do and pursuit of finding answers. Don't let doctors and medical staff dismiss you. But in the meantime, I hope things will improve for you or become tolerable. You had your transplant done over 2 years ago but I think really, living with a transplanted organ is still new to you. I would think it could take a few years or more before a new life with a new organ settles in. Transplants I think are a pretty big deal, I would think it takes a long time to adjust to even the fact that you were transplanted. How amazing that lives are saved with organ transplants! Lives! That's a big deal! And your life is a big deal. So I do hope that you continue as best as you can like you are doing and let us know how it goes. I don't know if your hearing will improve but we're here to help make it tolerable. Take care.
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kristina
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« Reply #322 on: Today at 07:26:03 AM »

Many thanks for your kind inputs, iolaire, enginist and PrimeTimer ... and perhaps there is some truth in what you are saying enginist, because since “my” kidney-transplant “things” definitely have not gone according to my hopes.

This I don’t understand, because my pre-dialysis days lasted over 43 years and of course it was not easy and of course, some nephrologists were very eager to take an “urgent” kidney-biopsy again in order to find out, why my “two little fighters” were still functioning.
 
But, except for one kidney-biopsy, which went very wrong and took place in the early 1970’s in order to diagnose “my” suffering from chronic proliferative Glomerulonephritis, I always refused another biopsy from then on in order to protect their function to last a little longer, because I was then medically advised to never ever have another kidney biopsy again.

But now, since “my” kidney- transplant “things” have gone “pear-shaped” ever since without me getting any break ... But I am not giving up hope yet and I still continue to hope, that some luck might come my way and I might finally have a chance to first of all finally recover from the transplant and then hopefully have a chance to carry on with less health-troubles ...

Many thanks again for your kind thoughts, it is very much appreciated. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
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« Reply #323 on: Today at 08:10:20 AM »

So much of pharmaceuticals seem to be about weighing the benefits vs harms. I believe that the benefits of my transplant drugs far outweigh the negatives. My own hearing loss I believe was a long time coming. I worked for years in the early days of transition to the computerized publishing industry. I was a typesetter using machines that punched holes in paper tape. This was a pretty loud environment and I do think my hearing was impacted at that time. I have an audiologist I see regularly. It could be a combination of my history plus the drugs. I am fortunate that my hearing aids work very well with my phone so I listen to music and take phone calls using them.

I don't think your post-transplant days have actually started yet because of this hernia pain. Something that should have been found quickly. I hope you will be feeling much better and able to do much more once that finally is addressed. I also hope there is some hope on the hearing front.

MooseMom that tac side effects list is so long it's frightening. It is so all inclusive that it almost seems useless. I feel vindicated that I blame every ache and pain and health weirdness on my meds. It's very convenient and since I can't do anything about it, I accept it. I have a friend who is a former nurse. She told me she never reads drug information that comes with prescriptions because she feels like she will then experience them.

Keep us updated Kristina. I really want you to be able to experience a better life post-transplant. I'm glad you are not giving up hope.
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SooMK
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« Reply #324 on: Today at 08:50:41 AM »

SooMK, you're right that the possible side effects list for tac is stupidly long.  I posted it only because it does specifically mention hearing disturbances.  I honestly don't know when I noticed the tinnitus as it is one of those things that sort of creeps up on you.  Tinnitus is so common in the general ageing population that in my case, it might not have anything to do with tac at all.  I read the drug information forms because I want to know if there are really serious side effects I should be on the lookout for, but I never think that I could POSSIBLY fall prey to any of them!  LOL. 

One thing that those drug information pamphlets emphasize again and again is that the prescriber has determined that the benefits of said drug outweigh the possible side effects, so again, SooMK, you are absolutely right about that.  And like you, I'll risk tinnitus if it means avoiding rejection.

Kristina, I know you have hernia pain, and I know you're experiencing hearing difficulties, all possibly due to the actual transplant operation and the meds.  But on the flip side of the coin, how is your actual renal function?  Is the kidney itself still working OK?
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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