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

[kickingandscreaming]

Kristina.  I know little about TX as I haven't had one and am not even on the list.  But I do have empathy and I'm sorry you're having such a rough time.  I hope your luck changes soon.

[kitkatz]

Remember:  You are stronger than you know.

[Michelle2016]

Immunosuppressive meds can cause high BP. It take so many years to figure out BP meds and the time to take the meds. As a patient, I has to be initiated. Dicoare are too busy to take care of each patient.

Good luck.

[kristina]

Many thanks for your kind and positive good wishes, cassandra, UT, cupcake, K&S and kitkatz, your kind and well-thought-out suggestions are very much appreciated.
Thank you cassandra, I feel today a little better and it makes all the difference.
And you are quite right UT, I made the decision over two months ago to go ahead with the transplant and unfortunately it takes very long in my case and despite the fact that the kidney seems to function well, everything else i.e. the medication etc. leaves a lot to be desired and gives me still a hard and rough time. But there again, doctors say that the first three months after a kidney transplant are the hardest to get over with and the second three months are the second hardest ...
Many thanks cupcake, I have again next week a meeting with the Post-Transplant-Coordinator and I have already started with a list about my current problems and hopefully it can be sorted out soon.
Many thanks also K&S and many thanks for your kind wishes. To be honest, at the moment I would not even be able to feel lucky or sorry for you because of you not being on the transplant-waiting-list right now, but there again I don't know whether I have such a hard time because of my suffering also from SLE/Lupus and connected Drug-Intolerance, which seems to make my recovery so difficult at the moment.
Many thanks kitkatz, I do hope you are right and I am, as you say, stronger than I know ...
And last not least many thanks, Michelle 2016, it seems to "fit", that Immunosuppressive-medicines seem to cause high blood pressure, because, since "my" Immunosuppressive-medication has been reduced a little, my blood-pressure seems to "behave" itself much better and does not give me terrible fears any longer (i.e. my history of cerebral haemorrhages and a stroke  because of uncontrolled high blood pressure at the time), because at this moment my bloodpressure does not go that dangerously high.
Many thanks again for your kind and positive thoughts, they are very much appreciated.
Best wishes and many thanks again from Kristina.

[kristina]

P.S. The reason why sometimes I am not quite there to answer straight away, is, because in the last weeks I have been in and out of hospital, sometimes admitted for a while/days/week etc.  and the other times at the specialists and - unless I pay money for Internet-access to the hospital, there is no Internet-access to be had and - being unwell and in hospital I think it is in bad taste to try and make patients in their medical distress pay money for Internet-access ...

[Paul]

Kristina - I know what you mean about hospital charges. The hospital I am most often in actually charges you to watch TV after 11 in the morning. However I found a solution to Internet access away from home years ago, when I was having to stay at my boss' home a lot. Found it by accident. I had a row with the company who provided my landline and Internet access and told them to shove their service. Then I realised that without a landline, none of the other ISPs could supply me. In the end I got a dongle. I get far more bandwidth than I use per month (and I watch a hell of a lot of online TV, although not in HD) and it costs very slightly less than the contract I had with Virgin for Internet access. I can take it anywhere use it when in hospital, when on dialysis, etc at no extra cost. Strongly recommend the service (but avoid the company called "3", they are crooks). You just get a small USB thing about the size of a cigarette lighter, plug it in your laptop, and can use it anywhere you can get a mobile 'phone signal.

[kristina]

Many thanks Paul and what a great idea that is and many thanks again for telling me !
We have kept our DVD-collection from the "old days" and found in a sale on the Internet a small portable apeman-DVD-Player (very simple no remote) which can be connected to the electricity-system and has also some battery in it to be able and watch a film, in case there is no electricity-access available for patients and that kept me going until I was discharged after the transplant with infections.
... Have you heard some positive news about your position on the waiting-list? I wish you very good good luck, good speed and all the best wishes from Kristina.

[Paul]

Have you heard some positive news about your position on the waiting-list?

Have just had a Shockwave Angioplasty which apparently went very well, the doctor will review me in about three months and if all is still OK he will pass me as fit to go on the list.

[kristina]

Hello Paul, I keep my fingers crossed and do hope it all goes well and easy for you !
Best wishes from Kristina.

[Paul]

Thanks.

[kristina]

Luckily I met at the transplant clinic a kidney specialist, whom I have met before.
The "usual" transplant doctors I meet were thinking of some "heavy" check-ups to find out why my new kidney is not quite as it should be.
But this doctor thought to give the new kidney more time to find its way to settle ...
I am very grateful for that thought because, after all, I have not needed dialysis since November 2018 and that means a lot and furthermore, it just could be that my new kidney really needs a bit more time in order to wake up and find its way and settle  ... 

[iolaire]

Luckily I met at the transplant clinic a kidney specialist, whom I have met before.
The "usual" transplant doctors I meet were thinking of some "heavy" check-ups to find out why my new kidney is not quite as it should be.
But this doctor thought to give the new kidney more time to find its way to settle ...
I am very grateful for that thought because, after all, I have not needed dialysis since November 2018 and that means a lot and furthermore, it just could be that my new kidney really needs a bit more time in order to wake up and find its way and settle  ... 

That sounds like a good choice after the rough few months you have had. Good luck.

[kristina]

Thank you, iolaire for your kind good-luck wishes.
How is your transplant going? Do you have to take many different medications? Or have the doctors reduced the amount of medication you have to take?
It certainly seems to need lots of thought to get it right with the medication for every individual patient ...
It seems now that I was lucky to have had my transplant at the time when I had it, because with my dialysis-treatments I needed to take more and more medication as time went by and it did not look good for the future and did not go into the right direction either ...
All the best from Kristina.

[iolaire]

How is your transplant going? Do you have to take many different medications? Or have the doctors reduced the amount of medication you have to take?

Its going good, much easier once I passed the six month mark and should be a lot easier this year as I cleared out some of the other post transplant medical stuff like the parathyroid and fistula removal.

Meds wise I'm down to 3 mg evarsus (Tacrolimus), mycophenolate sodium (anti rejection), 5 prednisone, plaquenil and sodium bicarbonate.  The tac level fluctuates and this is the lowest mg yet (that was also my best creatinine level at 1.32), this weeks labs will show if it needs to go back up.  So far there has been few months were the tac level has not resulted in a change in the evarsus.  The sodium bicarbonate is almost over - I'd guess in another month or so my last daily dose will be gone.  So med wise its fairly easy, 5 pills at 5 am (timing my choice), 5 with breakfast and two at 5 pm.

Calcium is still just above the high post parathyroid surgery but my PTH is down to just above the high range at 82 versus say 130 prior to the surgery.

[kristina]

Many thanks iolaire for the kind information you gave and thanks again from Kristina.

[kristina]

Hello,
I am very happy to share my recent good news. My kidney function was 19% before and now it has climbed-up to 23%, hopefully meaning, that my new kidney is still continuing in its own way to slowly pick-up and this after nearly three month ! Hopefully it continues like that for a little while longer  ....
I am quite ecstatic about the new development right now and the Doctor told my husband and me, that my recovery appears so slow, because the new kidney and I were already going together through a very rough time with the two nasty infections I had, one after the other. The first infection was due to my sharing facilities with one particularly not so hygienic female. But the second infection was a full blown urinary tract-infection and it became so bad, that at one point I was unable to tell the doctors details about where my husband and I are living and that was a very frightening and confusing moment ...
Fortunately the antibiotics helped a lot in my recovery from the transplant-operation and now it seems, my general recovery is going slowly ahead now and I also have to take less medication, possibly because of my weight (57 kg) with 1.67 meter in height and my blood-test-results are very satisfactory right now as well and that helps to reduce my medications etc.  ... and ... my new kidney happens to be a very good match ... and it seems to like being with me and my body and me like being with "it" as well...
The doctors also want to "put in" a "stent" to straighten a "kink" between bladder and new kidney in an effort to increase my kidney-function further and hopefully it is going to happen without complications ... 
I am so glad about the new development right now, because at one time I felt that my recovery-possibilities looked a bit grim and hopefully my new kidney picks up a little more function as well. That would make me even more happy and as it is right now, I am very grateful about how it is developing ...
Best wishes and good luck to all    from Kristina.

[iolaire]

Great, lets keep the good news coming...

[Michelle2016]

Hi, Kristina:

I have a good news for you.
1. eGFR as the kidney function is not accurate for transplant patients. eGFR is calculated from creatinine level, gender, age, and race.

2. Creatinine level is more accurate for transplant patients who has only one kidney.

3. Creatinine level is the creatinine remained in your blood stream. It is the waste which is removed by a kidney. Creatinine is the end products of proteins  from muscles.

4. If you have two kidneys now, two kidneys remove more creatinine  from your blood stream. Your creatinine should be within normal range. 

Wish you the best.

[Michelle2016]

What’s your creatinine level now?

[kristina]

Hello Michelle,
Thanks for your kind asking.
My Creatinine-level changes constantly, but unfortunately it goes downhill and does not look good for the future with all the heavy added medication ... and I have still my two own "little fighters" with hardly any function left ...
The transplant gave me one kidney, but it did not really take off ... a few times it looked as if it would take off, but unfortunately it was wishful thinking plus trying very hard  ...
Best wishes from Kristina. 

[Blake nighsonger]

Hi , Thinking of you, remembering the story or the "red string ."

Take care--     
 

         

                       

[kristina]

Hi , Thinking of you, remembering the story or the "red string ."

Take care--     
 

         

                       

Hello Blake, many thanks for reminding me of the story of the "red string", that's so sweet.

[Michelle2016]

Hi, Kristina:

Let me know if you have any questions.

Take care.














Removed personal email address Mod Cas

[Paul]

Not a good idea to post your email on an open forum. Better to PM that information to Kristina then delete your email address from the post.

[kristina]

Not a good idea to post your email on an open forum.

Hello Paul,
Please tell me : Why is it not a good idea ? Did you go through a bad experience with it ?
Many thanks from Kristina.