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

[Michael Murphy]

It’s always nice when someone graduates.

[iolaire]

Sorry to hear you are having this issue. 

I will say the high levels of prednisone made me sleep very badly and have nasty dreams. That started to resolve as the prednisone was tapered down.

[MooseMom]

Hello again
Unfortunately my recovery from the transplant operation leaves lots to be desired. For starters, I suffer from permanent sleep deprivation since the kidney transplantation and that makes it impossible for me to move forward and find a way to recover.  Unfortunately the medics cannot help me about this as it appears to be a problem within other patients who appear to be racially motivated towards me. Very sad. My only hope is to be discharged as soon as possible which does not make any sense if one thinks about the great skill of the medics and the great cost and great care a kidney transplant necessitates. Unfortunately I have come across a most terrible experience and hopefully this nightmare stops soon and hopefully I soon may have a chance to return as soon as is possible back to civilisation again as soon as I have a chance to return back home again. Who would have ever thought that my recovery from the long awaited kidney transplant could become so very difficult  ?

Dear Kristina,

I am sorry to hear you are having a difficult time while still in hospital.  Is there a particular reason why they have not let you return home?  Have you had complications with either the surgery or the meds?  I had my surgery on a Sunday morning and was released just 3 days later;  the transplant recovery unit was fitted with special HEPA filters to help prevent post tx infection, but even so, they told me that hospitals were dirty places and so they like to get their patients home as soon as possible.  Now, I know the NHS may do these things differently than tx centers here in the US; is that why you are still in hospital?  Are post tx patients in the UK just kept in hospital for longer?  Can you demand to be released?  Do you feel ready to return home?

[kristina]

Many thanks for your kind concern and kind wishes. Unfortunately it was not "plain sailing" after the transplant operation. First of all I had the catheter "in" for a little too long, which enabled "it" to develop a nasty "little" infection and that took time and hopefully
I am soon in the clear to start getting better and start the process of recovery. 

[enginist]

It's very disturbing, and hard to believe, that other patients, for whatever reason, would be determined to make your recovery as difficult as possible.  I'm sorry that you've had to encounter human nature at it's worst, when you should be feeling nothing but positive about the gift you have received. This is one of the most hateful stories I have ever heard.  I hope they all get sepsis.

[cassandra]

O bugger Kristina, get better soon and stay strong!


Lots of love, Cas

[Cupcake]

Dear Kristina, so sad to here your recovery is slow. Hang in there! I agree that getting home and into your own routine will be the best medicine.

You are such a lovely and positive person--sending you lots and lots of good vibes! You are much loved.

[UkrainianTracksuit]

Oh kristina, I am very saddened to hear your recovery has a few set-backs.  You are a strong and intelligent woman so that I know you will get through this and be on your way at this new life soon!

I know that you are unwell so only explain when you are well enough, or, you don't have to explain anything further, as it is your right too. However, I am just pondering how sleep deprivation with other patients at the root could be possible. Are you in a ward? Silly question to ask as such a scenario wouldn't be beneficial to tx patients. At my tx, I had a private room on a tx-restricted floor. It was all very quiet and I only encountered other patients doing our walkabouts. Only issue with a patient was a poor man going through pre-liver transplant protocol (a lot of bathroom use) but that was it. I barely slept for 2 weeks though! Up at 2 or 3 am watching television...

I am sorry that you developed an infection.    But take heart! I developed a serious wound infection and having the incision opened, drained, and antibiotics solved it fairly quickly! You will be ok and on your feet soon! Take care! We are rooting for you!

[MooseMom]

Many thanks for your kind concern and kind wishes. Unfortunately it was not "plain sailing" after the transplant operation. First of all I had the catheter "in" for a little too long, which enabled "it" to develop a nasty "little" infection and that took time and hopefully
I am soon in the clear to start getting better and start the process of recovery. 

I just felt it in my waters that something was not quite right.  Keeping the catheter in for too long smacks a bit of incompetence.  Sleep disturbances are certainly an obstacle to a quick recovery.  I hope things get better quickly.

[kristina]

Dear friends, this morning I woke up feeling very relaxed about my transplant and the future looks much brighter now and I send you my best wishes from Kristina.

[cassandra]

                   


Keep it up girl!!!!

[Cupcake]

So happy to hear it! Don't forget those steroids mess with your head; my outlook improved the third week when I was down to the 5mg daily maintenance dose.
Good luck! Have a wonderful Holiday Season!

[MooseMom]

That's very good news!  I hope you can go home soon.

[UkrainianTracksuit]

Super news! 

[kristina]

Hello friends, the latest is that now I suffer from a urin-infection and I wonder what is going on and it seems extraordinarily that "things" still do not get themselves right. It seems a rough ride at this moment and hopefully it gets better soon and my recovery starts hopefully very soon as well and ... I still live in hope ... 
 

[MooseMom]

Hello friends, the latest is that now I suffer from a urin-infection and I wonder what is going on and it seems extraordinarily that "things" still do not get themselves right. It seems a rough ride at this moment and hopefully it gets better soon and my recovery starts hopefully very soon as well and ... I still live in hope ... 
 

Do you mean a urinary tract infection?

[enginist]

You've had that catheter for four years, haven't you?  Why did you choose a Tesio over a fistula?

You are usually a very thoughtful person, but, as Cupcake said, the meds could be messing with your head. 

[MooseMom]

You've had that catheter for four years, haven't you?  Why did you chose a Tesio over a fistula?

You are usually a very thoughtful person, but, as Cupcake said, the meds could be messing with your head.

This post makes me wonder if I've misunderstood something, Kristina.  Were you referring to the catheter you used for dialysis the catheter inserted into the bladder during surgery/post-op?  I assumed it was the latter, but I could well be wrong.  Apologies!

[kristina]

Hello, I take heavy antibiotics because of an urin-infection probably come about due to the post-op-catheter.  With my dialysis-chest-cath there were luckily never any problems during all those years.
I don't understand what cupcake means that the medicines could "mess up" my head, what could it mean ?

[UkrainianTracksuit]

Hi Kristina,

When Cupcake noted that the medications mess up one's head, she most likely was referring to the high dose of steroids, Prednisone, that patients receive post-transplant operation. This sort of drug, especially in the higher doses that patients receive after transplant, are notorious for causing sleep disturbances and mood changes.

The good news is that the dose of this drug is tapered down over time, to a very small management dose, that those symptoms/side-effects go away.

Take care and speedy healing.

[kristina]

Many thanks for the explanation Ukrainian Tracksuit, it is very much appreciated. Fortunately I had no trouble yet with medication and I am very grateful about it because trouble with medication after a kidney-transplant was a fear I hear often mentioned. I am hoping now for my creatinine to drop down further and hopefully it does happen.
Best wishes from Kristina.

[iolaire]

I am hoping now for my creatinine to drop down further and hopefully it does happen.

I looked back on how long it took my creatinine to settle down to its final resting point with a cadaver kidney, it took from July 13th for my first set of labs to a lab result below with creatinine at 1.5 on August 29th, so almost a month and a half.  It took roughly a month to get to 2.  It took 2.5 weeks to get to creatinine of 3.8.  So at least in my experience there is a fairly long slope down to the final resting point.  This was with creatinine starting at 8.7 post transplant.  (No dialysis needed after transplant.)   

Best wishes.

[kristina]

Many thanks iolaire for your comprehensive information, it is very much appreciated and makes me very happy and clearly shows, that after the transplant we need to be very patient. I have talked to a medical person who assured me that a vegetarian diet without any spices would go a long way because the kidney does not "like" to get "excited" about heavy spiciness. At the moment I try to learn as much as is possible about "mollicoddling" my new kidney as much as is possible so that we can "walk" for as long a road and as far as is possible in unison together. I am extremely grateful for this great surprising gift from my anonymous donor. Life sometimes turns out to become a real miracle. Just image, a complete stranger donating his kidney to me and the excellent medics operating and all turns out to become a real miracle. We have certainly become an extremely civilised and refined society in the truest humanitarian context and I am very grateful ... 

[enginist]

That sounds as positive and encouraging as the old Kristina.  I hope you got a good night's sleep.  "Sleep that knits up the raveled sleeve of care."


Iolaire, I read it took about two months to start feeling normal, so you were pretty much on track.

[kristina]

Many thanks enginist for your kind thoughts, it is very much appreciated, especially right now whilst I try so hard to "get rid" of that nasty infection. But "things" look already a bit better and hopefully I shall have a chance soon to go home and hopefully my body finds a way soon to "settle" from the huge upheaval.
Best wishes from Kristina.