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

[MooseMom]

The prescription that made you feel so exhausted...was it a new hypertensive, or was it one that you had taken for a long time but had begun to interact badly with your new immunosuppressants?

[kristina]

The prescription that made you feel so exhausted...was it a new hypertensive, or was it one that you had taken for a long time but had begun to interact badly with your new immunosuppressants?

Hello MooseMom,
The medication that made me feel so totally exhausted and extremely tired was a well-established kidney-transplant anti-hypertensive medication and I had started with it for the first time ever straight after my kidney-transplant. I don't know whether it was interacting with the immuno-suppressants or whether it was because of "my" Drug-Intolerance, but I suspect strongly that the reaction happened because of "my" SLE-connected Drug-Intolerance.
Good-luck-wishes from Kristina.

[MooseMom]

Thanks for the explanation.  I thought you had been taking hypertensives before your transplant; is that correct, or did I misunderstand something?  If you had been, did they take you off that old medication, start the new one, find out that it did not suit you so then switched you to another?  Is that right?

Sorry if I'm being rather thick!   

[kristina]

Hello MooseMom,
Of course, you are not thick !!! Please don't ever believe anything like that !!!
... I did take anti-hypertensive medication before the transplant and it worked well for me. Then, instantly after the transplant I was put on the - for me poorly tolerable -  kidney transplant-friendly anti-hypertensive medication and when the nephrologists realized that this idea did not work for me, they put me back to the anti-hypertensive medication which I had already taken without any problems before the transplant...
Please don't hesitate to ask me whatever you wish to ask, you are always welcome ...
Best wishes from Kristina.

[kristina]

... Next week I shall find out whether or not there is a future for my transplanted kidney and me or not.
Life sometimes throws bad surprises at us and hopefully a positive way forward can be found ... 

[kickingandscreaming]

I'm so sorry you are confronting this moment. I can only imagine how upsetting it must be.  I'll hope for the best.

[LorinnPKD]

kristina, you have always been such a sunny and open voice here -- we are thinking of you and wishing you the best!

[kristina]

Many thanks K&S and LorinnPKD, your kind thoughts are very much appreciated.
Best wishes from Kristina.
Fortunately the function has now picked up. . . not quiet as it should have, but nevertheless .  .  .  it hopefully is on its way ?

[kristina]

This journey is a real roller-coaster, it goes backwards and then again forwards,  up and then again down, hopeful and then again all seems to be lost ... again ... in my case strong nerves are very much needed at the moment for the journey ...
Fortunately I have a very understanding, very kind and very professional medical team on my side and that makes all the difference and hopefully they are turning it around...

[UkrainianTracksuit]

Keep the faith, kristina! Your team will do all that they can to keep your and your new kidney happy together. Sometimes, some kidneys are slower to start, but they continue to do their jobs. Sending warm wishes that this week's appointment goes well. 

[MooseMom]

Wait, what?  Has something happened?  What's going on?  I know your egfr and creatinine are not ideal, but I thought your other numbers were acceptable.  Is anyone on your team talking about you having to return to dialysis?  I don't like this.  This is making me nervous.  Please let us know what is happening.

[kristina]

Many thanks, K&S and UT and MM for your lovely thoughts, I appreciate them very much.
Unfortunately I have suffered two infections, the second one has just been finished. But my creatinine is still very high and despite the fact that everything else of the blood tests turned out to be alright, the doctors want to find out why the creatinine still turns out to remain so high. But apart from the high creatinine everything is alight. 
Best wishes and thanks again from Kristina.

[MooseMom]

I'm very sorry to hear you've had another infection.  You've really struggled, and I know you must have had some very low moments.  But I believe there is still hope, and I am counting on your team to pull you through this.  Please keep us posted, OK?

[cassandra]

Hi Kristina please remember that it is most likely the anti-biotics you've had that raise your creatinine. I don't know how much you drink, but you might want to increase it. Your other bloods are fine, so you WILL be fine. I'm sorry you have to have this happening to you, but we're with you in spirit.
I forgot to ask if you are on (extra) Prednison?


Lots of love, luck and strength, Cas


   

[kristina]

Many thanks, K&S and UT and MM for your lovely thoughts, I appreciate them very much.
Unfortunately I have suffered two infections, the second one has just been finished. But my creatinine is still very high and despite the fact that everything else of the blood tests turned out to be alright, the doctors want to find out why the creatinine still turns out to remain so high. But apart from the high creatinine everything is alight. 
Best wishes and thanks again from Kristina.

P.S.Apart from being "alight" (those Freudian slips again...)  "things" are also getting slowly alright again in their own time ...
Best wishes again from Kristina.

[kristina]

Many thanks MooseMom and Cassandra.
It is true, the second infection brought me to a very low point, but now I am slowly returning to my hopeful and positive self again... and I am now also able to drink over three and a half  liters of liquid (water,  juice and coffee) every day ...
All the best wishes from Kristina.

[kristina]

Hi Kristina please remember that it is most likely the anti-biotics you've had that raise your creatinine. I don't know how much you drink, but you might want to increase it. Your other bloods are fine, so you WILL be fine. I'm sorry you have to have this happening to you, but we're with you in spirit.
I forgot to ask if you are on (extra) Prednison?


Lots of love, luck and strength, Cas


   

Thanks Cassandra, I shall have to ask the doctors if the raise of creatinine may be connected to my two episodes of infections after the transplant... Thanks for the idea. 
... To my knowledge I am not on (extra) Prednison ...
Best wishes again from Kristina.

[iolaire]

Kristina I hope thinks turn back positive for you.

Re the prednisone When my doctor was worried about inflammation that he worried could be kidney inflammation or lupus he upped the prednisone to 20 mg from 5 mg (now back to 5 mg) and also started me on Plaquenil (Hydroxychloroquine) which I’m still on.  He has not stopped the Hydroxychloroquine, I think he feels it’s safest to keep some level of drugs going despite my 20+ years of lupus remission (and his partners with strong lupus experience thinking it’s not lupus) and the clear AlloSure test on the kidney side.

[kristina]

Thank you, iolaire for your kind wishes, I do appreciate them very much and wish you good luck as well with as little upsets as is possible.
It is very difficult to really figure out whether or not it is a flare-up or not, time will tell ... and hopefully it is false alarm. Lucky you being able to take Plaquenil, since Plaquenil was sold and taken over by another company and chemically changed slightly,  I could no longer take them because of "my " drug-intolerance "kicking in"...
Many thanks for your kind message and best wishes from Kristina. 

[kristina]

P.S. I feel a bit hard done by because I kept myself so well through all my four dialysis years, I never had any problems, but since the transplant everything goes wrong. I had already two infections with symptoms of the third one being under way, not much medical help under way,  I am with no-transplant-patients in the same room, lots of coughing etc. and to me it seems no care ... what on earth is it all about ?
I feel really a bit hard done by... is it all about research or is there really a chance for help and medical care ?
Or could it turn out that I made a terrible regrettable mistake ?

P.S. The symptoms indicating an infection showing themselves from one minute to another and then they stay and then they stay and need urgent treatment with antibiotics. I have mentioned it to the nurses hours ago and I am still waiting for a doctor ...

[MooseMom]

I don't blame you for feeling hard done by.  It's really really frustrating to do everything you can to keep yourself well, to follow all of the rules, to be vigilant and to sacrifice, all only to seemingly lose control of things not of your own doing.

I am so sorry that you have been so dogged by infections.  May I ask what is the nature of your current dilemma?

I don't understand why your hospital/clinic would leave you so close to others who may carry infection of any sort.  To put an immunocompromised patient in that sort of situation does not make sense to me and seems negligent at best.

I sincerely do not believe that transplant is performed only for "research".  Transplant itself is common.  Immunosuppression is common, although it is true that how well these drugs work can vary wildly.  Sometimes you can't know the answer to this sort of question, whether your decision to have a transplant has been a mistake, until a year down the line.  That said, though, exposing you to infection is inexcusable, and I very much want to know just what the protocol for transplant patient protection is at your hospital/clinic.  First, the catheter was in too long.  Which other mistakes have been made that have resulted in your subsequent infections?  That's what I want to know.

Try to hang on, Kristina.  All is not yet lost.  You've been a fighter for such a long time.  This is a different sort of battle, but I know that you will give it all you've got.  I know you are extraordinarily vigilant and driven to be successful.  Don't give up yet, please.  We are all on your side.

[kristina]

Many thanks again MooseMom for your kind understanding.
From my side I feel I have tried my very best and I feel very disappointed and cannot believe, how everything with my health care  has deteriorated since the transplant-operation ...I have tried my best and unfortunately I feel  had no medical back-up. My blood pressure has gone up to 210 (the upper level) and I have suffered in the past from two cerebral hemorrhages and a stroke because of uncontrolled high bloodpreassure.
I have no idea where to go from here and unfortunately I don't know of an organisation assisting patients in despair when they seem to have ended up on the wrong road.

[cassandra]

Hi Kristine are you feeling any better?


Thinking of you


      Lots of love, luck and strength, Cas

[UkrainianTracksuit]

I am so sorry to read of your woes, kristina.  What sorts of infections are you struggling with?

When I see my tx doctors, they share an outpatient clinic with other doctors with patients there for other things. So, I hear you about concerns being around coughing people. At least in my case, the receptionists enforce a strict mask policy. If anyone has the sniffles, a cold, or never had a flu shot, they have to wear a mask.

We hear so many stories about kidneys taking right off from the start gate and doing well. And so, we don't hear as often about those kidneys that are a little bit slower to get going but take heart, they have long-term successful outcomes too. It may be slower but things get sorted out, and there is hope. Please don't lose hope just yet, kristina. You are a fighter and you can do this!

Anytime we make major medical decisions, we accept some kind of risk. I was hesitant to get listed for transplant because I was doing well on dialysis. It was scary to think of tossing that stability away for the unknown. I placed no expectations on post-tx life, even though everyone painted it as flowers and rainbows, as to not have my hopes in the gutter were something to go wrong. But, we make the best decisions with the best information we have and go forward. It is only up to chance and medicine how things turn out. Please, kristina, do not fall into despair quite yet, as it is still early for your new kidney, and things may turn around.

I can commiserate with you over feeling a lack of care. But, please know, your team wants the best for your new kidney and you. Successful outcomes are what keep their practices and programs going. They will try their best to help you even if it seems like they are a bit unfocused at times. Please take care of yourself and give yourself a big hug!

[Cupcake]

Your post transplant coordinator is your line to help. I would tell them all of your concerns-despair is never a good feeling! They may have some suggestions that will help a lot.

I'm 3 months post transplant today! and my creatinine is 1.1! but I am battling a post op wound infection and have a big open owie in my belly. I go to the wound clinic 3 x per week and lug around a 5 pound pump to a wound vacuum 24/7; its hurting my back and really pissing me off. I've had 23 scheduled medical appointments for January, with blood tests, wound clinic, etc etc.Also the weather is terrible-its raining ice right now and going back to below zero in a day or two.

But I can see the light at the end of the tunnel and just keep plugging away. I am planning the trips I am going to take once I'm not tied down to so many dr appointments.

Good luck and know that you are in my thoughts and wishing you happier days.