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

[Simon Dog]

I had a rather long job interview yesterday (4 hours), and the final interviewer commented on my high energy level.   Not bad for 3.5 months post.

[kristina]

I had a rather long job interview yesterday (4 hours), and the final interviewer commented on my high energy level.   Not bad for 3.5 months post.

Hello Simon,
I wish you the best of luck with the job and send you my congratulations about your enormous energy-levels ! Please share with us the secret: how do you do it ? Could you please share with us some of your energy-level-tricks, please? I could do with some energy-tricks right now, as I hardly have any energy at all to get up from my "parked spot" on the sofa ...
Wishing you again good luck with the job and I send you my best wishes plus seasonal greetings from Kristina.

[Blake nighsonger]

Thanks again for all your kind wishes and kind thoughts, it is very much appreciated!
... Over the past few days I had "a little talk with myself" and it made me realize, that without dialysis
my life would definitely come to an abrupt end within the next few weeks ... or days...
... but with the help of dialysis I shall be able to continue my life and - with a bit of luck - I might be even able to continue with my work and career
and that would be absolutely magnificent ! Welcoming dialysis might give me also a chance to "be around"
whilst all the medical research into better kidney treatments carries on ... and who knows what might be discovered...?
... All in all, I shall welcome the opportunity to continue my life with the help of dialysis and hopefully
being on dialysis might "start a new chapter" in my life and this new chapter might "only" involve a few new routines...

Thanks again from Kristina.

        -----an indomitable friend's spirit    how cool this is              hang in there Krisina!                 

[Simon Dog]

I wish you the best of luck with the job and send you my congratulations about your enormous energy-levels ! Please share with us the secret: how do you do it ?

I did not say I had high energy levels.  I said the interviewer commented on my high energy level.  There is a difference. 

I was so caught up in the topics we were discussing that it kept me awake and engaged.    I do well as long as I keep doing something.  As soon as I become both physically and mentally inactive I start to get tired.

[kristina]

Thanks again for all your kind wishes and kind thoughts, it is very much appreciated!
... Over the past few days I had "a little talk with myself" and it made me realize, that without dialysis
my life would definitely come to an abrupt end within the next few weeks ... or days...
... but with the help of dialysis I shall be able to continue my life and - with a bit of luck - I might be even able to continue with my work and career
and that would be absolutely magnificent ! Welcoming dialysis might give me also a chance to "be around"
whilst all the medical research into better kidney treatments carries on ... and who knows what might be discovered...?
... All in all, I shall welcome the opportunity to continue my life with the help of dialysis and hopefully
being on dialysis might "start a new chapter" in my life and this new chapter might "only" involve a few new routines...

Thanks again from Kristina.

        -----an indomitable friend's spirit    how cool this is              hang in there Krisina!               

Many thanks for your kind thoughts, Blake nighsonger.
Mind you, this particular post of mine was written about four years ago, just after I had to start with my dialysis-treatments, but the thought has served me well and without it, I would not have had a good chance with my transplant, which came about a few weeks ago. But because of the exhausting "heaviness" of it all, I still have to take every day as it comes ... and again, without completely "sticking" right now to the new after-transplant-rules, "things" would certainly become much more difficult and much more complicated... so I better keep it as simple as possible for myself and "stick" to the very strict after-transplant-rules ...
Best wishes and seasonal greetings from Kristina .

[kristina]

I wish you the best of luck with the job and send you my congratulations about your enormous energy-levels ! Please share with us the secret: how do you do it ?

I did not say I had high energy levels.  I said the interviewer commented on my high energy level.  There is a difference. 

I was so caught up in the topics we were discussing that it kept me awake and engaged.    I do well as long as I keep doing something.  As soon as I become both physically and mentally inactive I start to get tired.

Hello Simon, how are you doing right now?
i am still very tired and exhausted from the operation and I admire that you do well as long as you keep doing something.
I shall look forward to get there and do something in the near future as well.
Best wishes, good luck and seasonal greetings from Kristina.

[Simon Dog]

Hello Simon, how are you doing right now?

The xplant is doing well, but I have bilateral pedal edema, worse in the right leg.  MD says it is very slowly getting better, probably a side effect of Tacro or Cellcept.

I plan on writing the donor's family at the one year anniversary.   I'm still at a loss for words - hopefully I will think of what to say in the coming 8.5 months.

[kristina]

Oh Simon ! I am so sorry and I do hope this bilateral pedal edema vanishes as soon as is possible ! You certainly don't want anything like that  and hopefully you can recover as soon as is possible from this bilateral pedal edema and the transplant-operation ! I do wish you the best of luck !
I also have been thinking of writing to the donor's family at the anniversary in a year's time and I feel it is very important to think of it and to do that because I feel it is so important to inform the donor's family that they did a very important humanitarian gesture which in the process saved my life and future. Mind you, at the moment I would not quite know how to say it to the donor's family either, except for a simple thank you, but that would not quite be good enough for what they have done for me, but I am sure the right sentiments come to me in time.
I do hope you won't have to put up with this bilateral pedal edema for much longer and I send you my heartfelt "get well wishes" and send you all the best from Kristina.

[Simon Dog]

The edema is an annoyance, not a lifestyle destroyer.  My doc ordered 3 ultrasounds and an echo to rule out blood clots and right sided heart failure.   He did not order a contrast scan to check for iliac venous stenosis since the dye presents renal risk and the bilateral nature was anti-suggestive of venous stenosis.

It's interesting that even though I am only 60 my transplant neph ordered the high dose flu shot (generally recommended sarting at age 65), but waited until 3 months post transplant.

[kristina]

Hello Simon, I do hope it all goes well for you and I wish you all the very best.
I am not surprised that your transplant-nephrologist ordered a high dose flu-shot for you, because it is not only the season right now for all different versions of the flu but we also remain for the first year after a transplant extremely vulnerable. I do hope it goes all well for you and I send you my best wishes and good luck from Kristina.

[Xplantdad]

Many thanks Xplantdad for your kind thoughts. I have been very lucky, because the waiting usually takes much more time & patience and I was told that it was a good match and so it became luckily my term. Mind you, I am still going through it from one day to the next and I am drinking water "like a fish" and to  permanently visit the hospital has become my "main occupation" at the moment. But, apart from an almost complete exhaustion, which makes me sleep a lot at all times, I am already doing much better and I look forward to my recovery.
... How is Holly doing and how are you? I always thought how kindly you supported Holly and I send my best wishes and seasonal greeting from Kristina.

Hi Kristina...Holly is doing well. Today is the second anniversary of her kidney transplant. We celebrated by going to dinner tonight

We had an awesome weekend last weekend...check it out here: http://ihatedialysis.com/forum/index.php?topic=34929.msg528125#msg528125   

[kristina]

Many thanks for sharing these wonderful pictures and stories, they are very touching and it is amazing how both families have found their way forward together. It reads and feels like a miracle !
I am so glad that Holly is doing so well and she looks and appears very happy and I thank you again for sharing !
I send you my best wishes, Happy Season Greetings and good luck in 2019.
Best wishes from Kristina.
P.S. Today I was thinking for the first time - since the transplant - to go for a tiny little walk and then I realized that I surely must feel a little bit better and it made me very happy...
I think tomorrow I shall wrap myself up with my warmest winter-coat etc. and shall give it a try and venture for a tiny little walk outside ...   

[Xplantdad]

Many thanks for sharing these wonderful pictures and stories, they are very touching and it is amazing how both families have found their way forward together. It reads and feels like a miracle !
I am so glad that Holly is doing so well and she looks and appears very happy and I thank you again for sharing !
I send you my best wishes, Happy Season Greetings and good luck in 2019.
Best wishes from Kristina.
P.S. Today I was thinking for the first time - since the transplant - to go for a tiny little walk and then I realized that I surely must feel a little bit better and it made me very happy...
I think tomorrow I shall wrap myself up with my warmest winter-coat etc. and shall give it a try and venture for a tiny little walk outside ...   

Hi Kristina..."baby steps". You will do just fine. So glad that you are doing better. Merry Christmas

[kristina]

Hello again and many thanks again and also thanks for your kind encouragement, it is very much appreciated ... and you are right, I honestly still take little "baby-steps"... but I shall give it my very best ...
Thanks again and Merry Christmas.  

[enginist]

Simon, it sounds like you received a high-quality kidney. I've heard some people on this site say that dialysis is a huge drain on their energy levels.  Others seem to go on unimpaired.  But now you don't have to worry about it.  High energy means that your health is robust. 

I'm going to get a second flu shot in January.  According to the New York Times, the vaccine loses 20% of its effectiveness per month.  Having had sepsis, that kind of worries me.  I've read that if you've had sepsis and then get the flu, your mortality rate goes up by a factor of ten.  Like a recent transplant recipient, I avoid crowds, children, and enclosed spaces.  Maybe someone can tell me why there are so few mentions of sepsis on this site.  As a hospital-borne illness, it should be as prevalent as it is virulent. 

Kristina, now that I've had time to listen to him, I'd have to rank John Field as one of the great discoveries of my life.  I've always loved solo piano, and Field is up there with the best.  The nocturnes, all 18 of them, are very nearly perfect.  As Simon says, maybe I can think of a way to thank you in the next eight months or so.

[kristina]

Kristina, now that I've had time to listen to him, I'd have to rank John Field as one of the great discoveries of my life.  I've always loved solo piano, and Field is up there with the best.  The nocturnes, all 18 of them, are very nearly perfect.  As Simon says, maybe I can think of a way to thank you in the next eight months or so.

Many thanks enginist, for letting me know your delight of listening to the compositions of John Field. I am so happy that I could assist in your discovery !
His compositions are so delightfully sensitive without "overdoing it" and I like it very much.
I wish you many happy hours listening to his music and if you get the chance to listen ( hopefully on youtube) to his compositions being played on historical instruments of his time, Joanna Leach (1937-2011) was one dedicated pianists, who mainly played on historical instruments of his and Clementi's time. John Field played mainly on Piano Fortes (or Square Pianos) created by Muzio Clementi (1752-1832), and John Field (1782-1837), who worked for Clementi, whilst they toured Europe together with Clementi's specially produced Piano Fortes. Muzio Clementi was one of the best Piano Forte & harpsichord-players & composers during his time and because of that he could especially produce unique Piano Fortes, who had a very special sound-tonality with a damper and these pianos were considered to be the very best, we could say, Clementi created the Rolls Royce of the Piano Fortes ... Such Piano Fortes were never produced in such great quality again ( would perhaps be too costly these days) and unfortunately there are very few of these still in working-condition, but fortunately there are a few dedicated pianists to bring this unique Piano Forte - sound back to the public's attention ... and there are also a few very dedicated Piano Forte-restorers, who carefully restore these Piano Fortes and bring the wonderful unique sensitive sound of these Piano Fortes back to us ...
All the best and happy 2019 wishes from Kristina.

[Simon Dog]

Simon, it sounds like you received a high-quality kidney.

I got a KDPI from a 33 year old female.   The Creatine runs a bit high (but still in the 1's) because it was small - my MD says it would be generating a 1 if in someone the same size as the donor, and not to worry because it works very well and a biopsy 3 months out showed everything to be in great shape.   I am 106kg - a MAOG (Middle aged overweight guy), but not quite a MAFG.












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[kristina]

Hello and Happy New Year and good luck to all in 2019 !
I am still trying to recover from my transplant-operation and I still feel extremely tired and fatigued, but there again, it is only six to seven weeks since my operation, so perhaps I should not be too impatient ...
Perhaps my recovery also takes a little bit longer, because of my health-history ~(in my case it is rather a sick-history) and also "my" ongoing Systemic Lupus Erythematosus (SLE) and all the other SLE-connected diseases.
I any case, I do hope to feel better soon and hopefully there is soon a little bit more noticeable energy to return, I could really do with that.
Fortunately I have no problems with the transplant itself, it feels totally "at home" with me and my body and I am very happy about that. It does not feel as if I have a new organ in my body, which is quite amazing. I also get along with the medication, in fact, two of the medications have already been reduced by doctors orders. My blood tests seem to be alright, there are no questions about it and if it would not be for the tiredness and fatigue, there would be no problem at all ... and ... perhaps I need to take my time & need to be more patient...
Best wishes from Kristina.













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[MooseMom]

It is so wonderful that your doctors are happy with your new kidney function AND that you are doing OK with the meds.  I am so very pleased for you!  I know it must be frustrating to not yet feel 100%, but you are right to give yourself more time and patience.  I know you will take good care of yourself. 

[enginist]

Kristina, I believe your kidneys began to fail in the early '70s, right?  And they kept going for something like 45 years before you had to start dialysis.  Isn't that  also correct?  I would like to know what your GFR was doing during those 45 years.  Did it fluctuate wildly like the recent stock market?  Or was it on a gradual but steady downward slope?  In explaining the history of your kidney function, would you please express your GFR in the terms that we use here?  Also, why did you choose a tesio catheter?  Did you use that exclusively, or did you later switch to a fistula?

[enginist]

And you're right: Elizabeth Joy Roe is sensational. 

[kristina]

Hello enginist,
Yes, it is true, my kidneys first failed in 1971 and in 1972 I was well enough to go forward and have a kidney-biopsy taken, which diagnosed me with chronic proliferative Glomerulonephritis and over the years, during recovering a little from the kidney failure, my kidney function started the process of  deteriorating slowly, sometimes a bit more slowly and sometimes a bit more quickly and sometimes it stood still for a little while. Fortunately there was no wild fluctuation, but a steady and slow deterioration, which was as worrying and towards the end, just before I needing dialysis-treatments, it took all my courage to have my blood taken and face it. It was a steady decline and even so I was hoping for another miracle until the last minute, there was no repeating my good luck from 1971 when my kidneys recovered a little again, after I finally came out of the coma.
...  I chose the Tesio-chest-catheter, because I felt that a Tesio-chest-line could give me the best chance to continue my life and a little of my piano playing. which I had learnt as a rehabilitation after I suffered a stroke and after a while my piano-playing developed into my great hobby and it was also great that I had no teacher, because that method allowed me to develop my own individual piano-style (... that was the original idea, but most of the time I was too tired and too unwell to be able and play the piano during my dialysis-treatment-years in the same way the same way as right now, when  I am trying to recover from the transplant operation... I only used a Tesio-chest-catheter during all my dialysis-treatments and nothing else...
I send you all my best wishes for your future-dialysis-journey from Kristina. 
P.S. We all know of the turmoil and uncertainty you unfortunately also go through before your body needs dialysis-treatments and you can always approach us here ... Good luck again from Kristina... and our good luck right now is also, that the dialysis-machines these days have become much kinder to our body and again I wish you all the best of good luck...

[kristina]

Hello,
It looks as if the question about my being so "dead-tired" all the time since my kidney-transplant (the midst of November 2018) seems to have been solved. The nephrologist has changed my anti-hypertension-medication to a different brand and my husband and I are so relieved about it and, just to keep and eye on my being much better ...  and to make sure, we look out that - in the next few days -  I hopefully remain as much better as I have been feeling today, because I surely have been entering a much more lively world again and have left the "very sleepy always totally tired-world ... hopefully for good ... 
Thank you very much and best wishes from Kristina.

[cassandra]

Hi Kristina that is so good to hear. What on earth was it that was making you feel that way? I can imagine you feeling so relieved. Now go and have (yet another  ) drink on me please 




Lots of love, luck and strength, Cas

[kristina]

Hi Kristina that is so good to hear. What on earth was it that was making you feel that way? I can imagine you feeling so relieved. Now go and have (yet another  ) drink on me please 



Lots of love, luck and strength, Cas

Dear Cassandra,
Unfortunately I can't have  any of it,  because my body has not tolerated any alcohol for many, many years  ...

... Please note, that the medicine that made me so unwell and reacted so terribly with my body, did so, because I suffer from Systemic Lupus Erythematosus (SLE) and that goes automatically with SLE-patients suffering severely from Drug-Intolerance as well ...
My "case" and "my" Drug-Intolerance are therefore very individual to me as an SLE-patient and because of that individual circumstance, I feel that it would be unfair to mention the name of this medicine, because it definitely is, according to experienced nephrologists, the very best kidney-protective anti-hypertensive medicine for kidney-transplants and I don't want to put-off anyone, who is prescribed this medicine, because it still is the very best anti-hypertensive-medicine for kidney-transplant-patients, except for some unfortunates like myself, who suffer from SLE and Drug-Intolerance ...
It only took a little longer to find out in my "case", because it looked at first, as if I suffered from the exhaustion after my transplant-operation, which was a bit heavy in my case, because of my medical history and fortunately the doctor had the right idea and changed my prescription and when I took the new anti-hypertensive-prescription, my life slowly returned to be reasonable again... and I feel that I am now given a fair chance to recover from the transplant-operation ...
Best wishes and good luck from Kristina.