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

[MooseMom]

Many thanks again MooseMom, it is so good to be at home and I can definitely sleep much, much better, which is great and I  have no difficulty with all the many medicines. What gives me real difficulty is my trying ever so hard to drink such an awful lot every day, which works quite amazingly well, but my new kidney function is not 20% yet and I wonder, whether or not it hopefully picks up a bit more function and is it still early days ?
Best wishes from Kristina.

I do remember that my creatinine was reasonably stable in the early days but did slide around a bit as my meds dosages changed.


I don't know what a reasonable expectation is, to be honest.  If a patient's creatinine is high after transplant and remains high, but other labs are within normal range, then I suppose the transplant can be called successful.  We all now that creatinine alone is not the best indicator of kidney function.  So I guess the question is what your other lab values are showing.  What do your doctors say (other than to drink a lot of water)?

[kristina]

Many thanks again, MooseMom for your kind thoughts.
... Apart from my Creatinine, all my other blood-tests seem alright and the medics told me, that I do well. Mind you, it is a bit difficult to comprehend it right now, when my whole body still feels very vulnerable and is still a bit painful and I still feel very weak after the big operation ...  But altogether it is honestly getting much better, my spirits are on their way to be "happy go lucky" again as well and I can feel my whole body recovering and getting better and a little stronger. Most of all I look forward to be able and enjoy a lovely hot bath again, listening to a Vivaldi Concerto with some candle lights on, like I enjoyed in the "good old days" before my chest-catheter came along. Mind you, whilst I needed the chest-catheter I would never even think of complaining about it because. after all, my chest-catheter saved my life for a long time and it helped me such a lot and never gave me any problems at all, in fact, over the years it became my best friend...
Best wishes from Kristina and thanks again for your kind thoughts.

[enginist]

Katrina--
My switch to a vegetarian diet about three months ago has just produced its first positive lab results.  My GFR, which had dropped five points in a year, gained back every point it lost. This could be due to random fluctuations, but I attribute it to the diet, which I think reversed an ominous decline. Oddly, though, my glucose level shot up 50 points, and I'm not diabetic.  What could be causing that?  I did eat a bowl of sweetened corn flakes a few hours before the test. Could that have been the culprit?  Either way, thanks to you and my nephrologist, who also suggested that I go vegetarian, I am now a true believer.

And thanks for the tutorial on Clementi. He sounds like he could be the Stradivarius of the piano. 

[enginist]

Moose Mom,

A few pages earlier in this thread, when Katrina had an infection and wasn't feeling very well, you said something like "I could feel it in my waters that something wasn't right."  If you don't mind me asking, what does that mean?  And what is the origin of the phrase?  I can guess what it means in general, but what does it mean precisely?  Thanks.

[MooseMom]

Moose Mom,

A few pages earlier in this thread, when Katrina had an infection and wasn't feeling very well, you said something like "I could feel it in my waters that something wasn't right."  If you don't mind me asking, what does that mean?  And what is the origin of the phrase?  I can guess what it means in general, but what does it mean precisely?  Thanks.

I don't know the origin of the phrase, but I lived in the UK for almost 20 years, and it was a phrase I heard a lot.  I speak an odd blend of Brit and Texan.  It means the same as "I had a gut feeling", which is equally weird, I guess, when you think about it!

[kristina]

Moose Mom,

A few pages earlier in this thread, when Katrina had an infection and wasn't feeling very well, you said something like "I could feel it in my waters that something wasn't right."  If you don't mind me asking, what does that mean?  And what is the origin of the phrase?  I can guess what it means in general, but what does it mean precisely?  Thanks.

I don't know the origin of the phrase, but I lived in the UK for almost 20 years, and it was a phrase I heard a lot.  I speak an odd blend of Brit and Texan.  It means the same as "I had a gut feeling", which is equally weird, I guess, when you think about it!

.
Hello MooseMom, many phrases don't really make much sense as such, but they are such great fun, some are even very eccentric and I always like it very much because all that gives away some of the wonderful eccentricities here ...
Best wishes from Kristina.

[kristina]

Katrina--
My switch to a vegetarian diet about three months ago has just produced its first positive lab results.  My GFR, which had dropped five points in a year, gained back every point it lost. This could be due to random fluctuations, but I attribute it to the diet, which I think reversed an ominous decline. Oddly, though, my glucose level shot up 50 points, and I'm not diabetic.  What could be causing that?  I did eat a bowl of sweetened corn flakes a few hours before the test. Could that have been the culprit?  Either way, thanks to you and my nephrologist, who also suggested that I go vegetarian, I am now a true believer.

And thanks for the tutorial on Clementi. He sounds like he could be the Stradivarius of the piano.

Hello enginist,
I am so glad that your vegetarian diet has already produced some good results and please don't be overly hard on yourself, life still should be a bit of fun (that is what my nephrologist tells me regularly, so I "just pass it on" ...). Of course, your GFR still could be fluctuating a bit, but you are definitely on your way and that is very recommendable. I am so glad that your nephrologist agrees with the vegetarian diet and it is so good that he supports you. That is really great for you! Well done !
I am also glad that you appreciate what I have written about Muzio Clementi, he is indeed called the "Father of the Pianoforte" and he has taught some of the very best students, for example the Irish composer John Field (26 July 1782, baptised 5 September 1782 – 23 January 1837) was his star-student who played regularly on a Clementi-Pianoforte for the Tsar of Russia (whilst Clementi sold many of his Pianofortes to the nobility in Russia...) and he also sold Pianoforte's to other nobilities within Europe and John Field had a great influence on composers like Frédéric Chopin, Johannes Brahms, Robert Schumann, and Franz Liszt ... Muzio Clementi also taught the French composer and violinist Paul Alday(e), who later became an important Professor of Music in the UK. Since Paul Alday(e) was Marie Antoinette's favourite violinist/composer at Versailles, he was forced to flee to the UK during the French Revolution, first to Oxford and later to Scotland and after that to Ireland (Dublin) to avoid conflict with other refugees, mainly because of his direct Marie Antoinette-connection. Paul Alday(e) remained in the UK as an important Professor of Music for the rest of his life and it was in Ireland where he wrote the first symphonies ever being written in Ireland...
... I very much appreciate Clementi's wonderful introduction on how to play the Pianoforte to make the Pianoforte sing and sound its very best. And of course Muzio Clementi's own production of singing harp-like Pianoforte's is still the very best ... Mind you, here in the UK there are unfortunately only two of the original-Clementi-Pianoforte's left ...
All the best and good luck-wishes with the vegetarian diet and all the best of luck with your GFR from Kristina.

John Field- Nocturne no. 5 B Flat Major Andantino - YouTube
https://www.youtube.com/watch?v=D4EhFkR8hSU

... I do apologize for these awful commercials, but this Nocturne no. 5 B Flat Major is definitely played in the very best and most tender way and unfortunately it is introduced first by these terrible commercials.

[enginist]

I'm not familiar with John Fields either.  It's interesting that both he and Clementi were near contemporaries of Beethoven.  Fields wrote a lovely little nocturne, which was a revelation to me.  Schubert also worked with B flat major in one of his last sonatas.  Alfred Brendel's rendition is my favorite, although Rubinstein was also a wizard of the keyboard. John O'Conor certainly does justice to the Fields composition, which seems nearly flawless to me.  Wikipedia says that Clementi wrote the first sonata.  I have to listen to the first sonata, so I'll try to find it on YouTube.  But now I don't want to pull myself away from John Fields.

[enginist]

Whatever the origin, it's a strange phrase.  It may be used more by women than by men.  If that it is true, it could be related to the amniotic fluid, which is often referred to as water.  This female-only attribute may be why women are associated with prophecy and intuition.   

[kristina]

I'm not familiar with John Fields either.  It's interesting that both he and Clementi were near contemporaries of Beethoven.  Fields wrote a lovely little nocturne, which was a revelation to me.  Schubert also worked with B flat major in one of his last sonatas.  Alfred Brendel's rendition is my favorite, although Rubinstein was also a wizard of the keyboard. John O'Conor certainly does justice to the Fields composition, which seems nearly flawless to me.  Wikipedia says that Clementi wrote the first sonata.  I have to listen to the first sonata, so I'll try to find it on YouTube.  But now I don't want to pull myself away from John Fields.

Hello enginist,
i am glad that you appreciate John Field and his wonderful composition. I very much prefer him to Chopin because Field sounds to me so much more true and honest. He is one of the very best.
Best wishes from Kristina.
John Field, Nocturne n. 2 in C minor, with score - YouTube
https://www.youtube.com/watch?v=BrnSxYyG2ZE

[kristina]

...I was told by medics that the first three months are expected to be the hardest/harshest after a kidney-transplant. How was your experience ? So far I have "only" managed four weeks after the transplant and most of all I still feel like resting most of the time.
My body still feels total exhaustion and a bit of pain after the transplant four weeks ago, but I haven't "got the nerve" to take painkillers, as painkillers could hurt/damage my new kidney and I have never ever taken any painkillers with my own kidneys either and they have lasted me for decades despite being in kidney failure and I suspect their lasting so long is in part connected to the fact that I have never ever taken any painkillers.
I would like to know how other kidney transplant-patients have managed in the first four weeks after the operation? Were they in some bother and pain and needed practical help and a bit of encouragement ?
Could they manage their household, their shopping and/or go for regular walks already ? I have not ventured to do any of it yet. My body still seems to need lots and lots of rest.
Many thanks for your kind answers from Kristina.

P.S. My blood pressure now still fluctuates between 159/71 to 174/82, which is a little bit high, even though I am taking regular antihypertensives; so it cannot be low blood pressure that makes me so exhausted and tired. I am wondering whether I have become anemic, but the doctors would have surely already picked-up on this and surely done something about it.

[Simon Dog]

Doing fine 3.5 months out. 

Side effects were tingling in right hand from tacro (has largely subsided) and bilateral pedal edema, worse on right side. Still dealing with edema, feeling good, pissing like a racehorse (neph has me on lasix to reduce fluid load and edema).

MD visits down to once every 3 weeks and labs only once a week.   Had one biopsy a couple of months out that concluded "nothing to see here, move along....".

[enginist]

Yes, Kristina, I too prefer John Field to Chopin.  Field is more lyrical, Chopin more meditative.  The former's compositions have a lucid clarity that makes Chopin sound muddy at times.  I just downloaded two of his albums from Amazon. 

[UkrainianTracksuit]

Keep in mind that I’m younger and thus, could rebound quicker.

By Day 4 post-op, they wanted me up, about and walking the hall. Slowly, it happened.

Like you, I was advised that the first 3 months are the most difficult in recovery as well as in dealing with a newly suppressed immune system.

I had a pancreas and kidney transplant. The kidney side offered minimal pain. The pancreatic side was more painful.

I took painkillers. One thing that I think is misunderstood is that not all painkillers are metabolized by the kidneys. For example, while I had CKD and “surprised” my doctors with how much life I squeezed out of them, I sparingly took painkillers. My nephrologists (including transplant) only prescribed those that are metabolized by the liver. (My liver works like a champ too, so there’s been no damage.)

My transplant team sent me home with a painkiller prescription, and later, only acetaminophen. These highly trained medical professionals would not have signed off to use such drugs if they believed they would hurt a newly transplanted kidney.

(It is the anti-rejection drugs that are harder on the kidneys anyway. They are the ones that do more damage over time than a occasional painkiller.)

After post-biopsy kidney pain, the tx team told me to take acetaminophen.

Naturally, I was advised to avoid all NSAID drugs, so that’s not a problem. (Minus the low-dose aspirin prescribed to prevent renal vein thrombosis.) Just something to consider.

By 4 weeks post-tx, I began doing grocery shopping and going to the mall. They were short outings (maybe a couple of hours). We flew home (same province) in a plane with no issues at all about two months post-op. (Just germ precautions.)

Both organs picked up working right away. I had no edema by a month and my egfr was routinely over 120. So, literally, I was a brand new person.

I spent a fair bit of time resting simply for the sake there were hours to fill in a day.

Due to the high protein/calcium diet that the tx nutritionist recommended, the biggest change was the addition of animal protein in my diet. So, I needed encouragement to eat in the first month.

My only issues now post tx are low blood pressure and low hemoglobin. The low hemoglobin is due to the immune-suppressives stifling the business in the bone marrow. As a result, the tx team is pushing for the inclusion of red meat .... and I just can’t. Egfr still around 120. Feel good.

Really want to get back to vegetarian eating but the hemoglobin issue is holding me back.

So yeah, the first month and then first 3 months were fairly straightforward. It’s only settling down into a very boring routine that I need encouragement.

Dear kristina, as I am sure you know, everyone is different. Your body will take as much time it needs to heal and feel well again. Sometimes it takes longer than other cases. Don’t get discouraged or impatient. You will have a lot of time with your new kidney so focus on healing. A lot of how we recover depends on our physical condition going into the operation and HD is not always kind to all the bodies reliant on it to live. So relax and give your body some time! 

[enginist]

UT--

I had an iron infusion that raised my hemoglobin from 9 to 13, which is at the low end of normal.  To boost it even higher, I take iron supplements from the drug store.  So far, they've raised it to 13.5.

[iolaire]

I was out walking as soon as I got home but I was beat afterwards. I was still sort of beat one month out when I went back to work after one month. I realized why they wanted me part time but after the first week back I was full time. They did say the exercise is important. I would recommend trying to get out for short walks even if that leads to an immediate nap afterwards.

[kristina]

Many thanks for your kind answers, it is great food for thought and very much appreciated.
One thing is for sure, it is much more complicated, than I first thought it would be ...
Many thanks again from Kristina.

[MooseMom]

As others have said, everyone is different, and recovery for one person can be very different from that of another.

My body didn't have to go through dialysis or SLE, so perhaps for those reasons my recovery was pretty easy.  (I'd had to have a hysterectomy in 2008, and recovery from the transplant was a tea party in comparison.)  I was generally quite healthy despite the progression to renal failure, so I count myself lucky in that regard.

Kristina, can I talk to you about painkillers?  I can understand your reasoning behind not wanting to take painkillers, but there is no honor in suffering unnecessarily.  I was sent home with a prescription for painkillers.  I filled the prescription but I never needed it.  You know that you should not take NSAIDs like Advil, but paracetamol is quite safe.  If you are in pain, that can make recovery slower because you will not want to get up and move about and take your little walks like you've been used to doing.   Pain can also make it more difficult to sleep (just when your body really needs good quality sleep), and pain can also increase your blood pressure (which your new kidney will NOT appreciate!).  I took paracetamol (Tylenol) when needed, but I did not need them for long.  I could say more, but I'd only be repeating what UT has already posted.

So, please think about it, OK?  I hate the thought of you being in pain that can easily and safely be well controlled.

[kristina]

Many thanks again, MooseMom,
I have asked the doctors and they told me that Paracetamol does not hurt or harm the new kidney and can be taken when in pain.
Mind you, my main problem at the moment is still total exhaustion and tiredness and I do not seem to have quite recovered from the exhaustion of the operation.
This tiredness/exhaustion is quite strange, because "usually" I am recovering very quickly and try to be up and running, but this time I still need lots and lots of rest and the doctor thinks this is quite normal and understandable because of the major operation.
Fortunately I have been re-assured, that "everything is going according to plan" and nothing has to be adjusted or re-adjusted, because "things" are going very well.
Many thanks again from Kristina.

[MooseMom]

Also, keep in mind that not only are you recovering from a major operation, but you are also recovering from an infection AND your body is getting used to a cocktail of new medications.  So, all in all, I think you are doing quite nicely!    I'm glad your doctors are pleased, too!

[kristina]

Many thanks MooseMom,
My body seems to slowly "come around" from the total exhaustion I felt after the huge operation and fortunately right now I don't seem to have side-effects from the medication either and hopefully (keep fingers crossed) it stays like that. I feel extremely lucky about this, because usually I am always the first one who suffers terribly from all possible side-effects of all medications I have to take, but this time my body seems to be pretty quiet about it all and hasn't complained yet. Isn't life strange sometimes ?
Mind you, I must say that a kidney transplant is at first definitely not a "stroll in the garden" to begin with and it can be a bit of a rough ride for the first few weeks to begin with and ... at first I was wondering what this was all about ... but fortunately it gets so much better with time and I can see now all the advantages of my transplant, even though my body still aches a bit from the operation and I am still very exhausted from it all. But now I can see the light at the end of the tunnel and all the advantages that come with my transplant, in fact, I feel to be truly on my way   ...
Many thanks again and best wishes from Kristina.

[Xplantdad]

Hi Kristina...I am late to the party (Been busy and lost my password...LOL) Congrats on your transplant

We are so happy for you!

[kristina]

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.

[enginist]

I would put sleep medication in the same category as pain medication, which is to say it's mandatory.  I take a combination of pills that help me sleep 11-12 hours a day.  Everyone knows that a good night's sleep is the best restorative.  It sounds like you need more than you've been getting.

[kristina]

I would put sleep medication in the same category as pain medication, which is to say it's mandatory.  I take a combination of pills that help me sleep 11-12 hours a day.  Everyone knows that a good night's sleep is the best restorative.  It sounds like you need more than you've been getting.

Hello enginist,
Many thanks for your kind thoughts. I just had a chance to ask a doctor about my exhaustion and he thought, that it is not surprising that I feel exhausted, because I went through a huge operation and the first three months are the most difficult and most exhausting one's, because the body has to adjust to such a lot and to such a big change. The doctor thought my body is doing very well under the circumstances and he is not worried about anything whatsoever and nothing needs to be adjusted. Perhaps it is time for me to join him and to start to relax a bit as well. It is just such a big "thing" for me and my body ...  after all, I have been in kidney failure since 1971/1972 and my body has been struggling a lot until now, including the past 4 years ago when I finally had to start dialysis. And now, all of a sudden, I have to "go to the bathroom" 24/7, including through the nights with a perfectly working kidney...
Best wishes and happy seasonal greetings from Kristina.