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Metalangel28
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« on: February 10, 2017, 05:14:13 AM »

How many of you have gone through a kidney transplant with absolutely  no issues after? No depression, no med side effects nothing. Everything is just perfect?)
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Metalangel28
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« Reply #1 on: February 10, 2017, 06:40:27 AM »

I ask because i posted a video 7 months ago about my transplant journey and things that i wasn't told of that i experienced post transplant. Someone commented yesterday saying they know a few people who have had transplants and they are thriving. No depression post tx no med issues nothing. I find this very hard to believe. That with a life saving surgery and a copious amount of medication everything is sunshine and rainbows. I could be wrong and know everyones experience is different. But i honestly want to know have any of you here had no issues what so ever.
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MooseMom
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« Reply #2 on: February 10, 2017, 08:21:38 AM »

I had only one "issue", and that was a dramatic and sudden drop in absolute neutrophils about 3 months post tx, but that was easily dealt with.  Other than that, I've had no issues.  I haven't experienced any depression or anything like that.

You are right to believe that it's impossible to have no issues whatsoever.  Depends upon what you mean by "issues".  Having to take a shedload of pills each day is an "issue".  Having labs each month is an "issue". 

Hope this helps.
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"Empathy is the soul of democracy."  Jeremy Rifkin
KarenInWA
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« Reply #3 on: February 10, 2017, 09:07:39 AM »

I am 5 years post-tx, and have had an interesting ride. If I hadn't consented to the Biopsy of April 2012, I would not have such a story.

The biopsy ended up damaging my kidney permanently (I received it on Nov 23, 2011). I had to have emergency surgery to save it from an obstrucing blood clot that took days to develop. I noticed it because I lost my urge to pee. I ended up in acute kidney failure w/a creatinine as high as 9.9. Since then, it settled into the low 3's, but just recently, it's been in the mid 2's.

I had one other hospitalization 2 years ago due to chronic UTI. That was from taking a PPI med that made my tacorolimus levels go up.

Other than those 2 things, and my most recent case of pneumonia, I have had no issues. All I do is take my meds twice a day, get labs as needed, and see my neph 3 times a year and my tx neph at least once a year, sometimes more. (the one who did the biopsy left my hospital in 2014 - the one who took over has never uttered the word 'biopsy' to me!).

No depression meds, no cholesterol meds (just had that tested last week - total cholesterol is 145!), no bp meds at this time. My PTH is playing games with me, so we are keeping an eye on that. Otherwise, all has been good!

KarenInWA
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1996 - Diagnosed with Proteinuria
2000 - Started seeing nephrologist on regular basis
Mar 2010 - Started Aranesp shots - well into CKD4
Dec 1, 2010 - Transplant Eval Appt - Listed on Feb 10, 2012
Apr 18, 2011 - Had fistula placed at GFR 8
April 20, 2011 - Had chest cath placed, GFR 6
April 22, 2011 - Started in-center HD. Continued to work FT and still went out and did things: live theater, concerts, spend time with friends, dine out, etc
May 2011 - My Wonderful Donor offered to get tested!
Oct 2011  - My Wonderful Donor was approved for surgery!
November 23, 2011 - Live-Donor Transplant (Lynette the Kidney gets a new home!)
April 3, 2012 - Routine Post-Tx Biopsy (creatinine went up just a little, from 1.4 to 1.7)
April 7, 2012 - ER admit to hospital, emergency surgery to remove large hematoma caused by biopsy
April 8, 2012 - In hospital dialysis with 2 units of blood
Now: On the mend, getting better! New Goal: No more in-patient hospital stays! More travel and life adventures!
kristina
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« Reply #4 on: February 10, 2017, 09:50:33 AM »

I am 5 years post-tx, and have had an interesting ride. If I hadn't consented to the Biopsy of April 2012, I would not have such a story.

The biopsy ended up damaging my kidney permanently (I received it on Nov 23, 2011). I had to have emergency surgery to save it from an obstrucing blood clot that took days to develop. I noticed it because I lost my urge to pee. I ended up in acute kidney failure w/a creatinine as high as 9.9. Since then, it settled into the low 3's, but just recently, it's been in the mid 2's.

I had one other hospitalization 2 years ago due to chronic UTI. That was from taking a PPI med that made my tacorolimus levels go up.

Other than those 2 things, and my most recent case of pneumonia, I have had no issues. All I do is take my meds twice a day, get labs as needed, and see my neph 3 times a year and my tx neph at least once a year, sometimes more. (the one who did the biopsy left my hospital in 2014 - the one who took over has never uttered the word 'biopsy' to me!).

No depression meds, no cholesterol meds (just had that tested last week - total cholesterol is 145!), no bp meds at this time. My PTH is playing games with me, so we are keeping an eye on that. Otherwise, all has been good!

KarenInWA

Thank you for mentioning this kidney biopsy, KarenInWa... I am very curious about kidney biopsies in the context of what do they actually provide and what are they good for? Are kidney-biopsies being taken to satisfy medical curiosity? Or are kidney-biopsies being taken in order to forward medical research? I wonder about this, because I was told many years ago by a medical Professor, that a kidney biopsy only aggravates a body that has already become oversensitive because of kidney issues ...
Could the old saying  "let sleeping dogs lie" be applicable in this case and suggest to avoid a kidney biopsy?
Many thanks from Kristina. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
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KarenInWA
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« Reply #5 on: February 10, 2017, 10:03:44 AM »

Thank you for mentioning this kidney biopsy, KarenInWa... I am very curious about kidney biopsies in the context of what do they actually provide and what are they good for? Are kidney-biopsies being taken to satisfy medical curiosity? Or are kidney-biopsies being taken in order to forward medical research? I wonder about this, because I was told many years ago by a medical Professor, that a kidney biopsy only aggravates a body that has already become oversensitive because of kidney issues ...
Could the old saying  "let sleeping dogs lie" be applicable in this case and suggest to avoid a kidney biopsy?
Many thanks from Kristina. :grouphug;

Hi kristina -

Post-tx biopsies are usually done to find out if there is rejection going on, or some other issue like an underlying virus or medicine toxicity. My hospital only does them if they think it may be necessary - other hospitals do them routinely no matter what. In my case, my creatinine was slow to lower, and it did get as low as 1.4, but then went up to 1.7. My then dr's case for doing the biopsy was to rule out the "slight possibility" of rejection - which there was none. That was by far the worst experience of my life. Not the biopsy, but the emergency surgery and recovery.

KarenInWA
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1996 - Diagnosed with Proteinuria
2000 - Started seeing nephrologist on regular basis
Mar 2010 - Started Aranesp shots - well into CKD4
Dec 1, 2010 - Transplant Eval Appt - Listed on Feb 10, 2012
Apr 18, 2011 - Had fistula placed at GFR 8
April 20, 2011 - Had chest cath placed, GFR 6
April 22, 2011 - Started in-center HD. Continued to work FT and still went out and did things: live theater, concerts, spend time with friends, dine out, etc
May 2011 - My Wonderful Donor offered to get tested!
Oct 2011  - My Wonderful Donor was approved for surgery!
November 23, 2011 - Live-Donor Transplant (Lynette the Kidney gets a new home!)
April 3, 2012 - Routine Post-Tx Biopsy (creatinine went up just a little, from 1.4 to 1.7)
April 7, 2012 - ER admit to hospital, emergency surgery to remove large hematoma caused by biopsy
April 8, 2012 - In hospital dialysis with 2 units of blood
Now: On the mend, getting better! New Goal: No more in-patient hospital stays! More travel and life adventures!
kristina
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« Reply #6 on: February 10, 2017, 10:12:50 AM »

Many thanks KarenInWa for your kind answer, it is very much appreciated
and I can well imagine how frightening this experience must have been...
Many thanks again and I send you my good-luck-wishes from Kristina. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
Michelle2016
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« Reply #7 on: February 10, 2017, 02:38:44 PM »

I'm 16 years post tx. I am 58 years old. I have had small issues such as weight gain, hair loss, and skin acnes. I never stop working since tx. Until two years ago, my white blood cell counts are very low due to so many years of meds. I had BK and CMV virus. But I am coming back now, thanks to the exercises, healthy diets, and meds.

Take care.
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monrein
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« Reply #8 on: February 10, 2017, 03:30:48 PM »

I had my first trx in 1985 after five years on hemo. It was a perfect match and lasted 23 years and a bit. I went back on D for a year then received my second transplant from my sister in law in law eight years ago this month.
I'm one of the very lucky ones who has had very few issues. I've gained a bit of weight but am not overweight. I am very active, eat very healthily...never anything deep fried, no processed foods or meats, mostly fish, beans, lots of veggies, yogurt, some cheese but small quantities, whole grains, fruit and nuts and dark chocolate. I eat as little sugar as I can.  I aim for at least five miles a day of walking and do small weights, some Pilates exercises knees on the floor push-ups and plank exercises.
I have cataracts now that are likely caused by prednisone but at 63 this is not a particularly unusual thing. I do take a low dose of statin medication for high cholesterol, very common for trx patients. My blood pressure is in the normal range without meds. I have osteoarthritis but no more and actually less than many friends. I have never taken the PPI mets that they suggest post transplant because I have no stomach issues from the trx medications. I have had a number of skin growths which are regularly removed by my dermatologist and tested but none have been cause for concern.

For me personally, transplantion has made my quality of life extremely good and remarkably "normal".I travel regularly, garden madly in summer ...really a lot ...and enjoy my life. I realize my good fortune. I live in Toronto, Canada and am also lucky to have excellent medical care. Biopsies are not done routinely. I had one when my first transplant started declining (due to Cyclosporine toxicity). The biopsy was to see if it was rejection which could be treated aggressively and reversed but that was not the case.
I wish you all the best.
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
SooMK
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« Reply #9 on: March 20, 2017, 05:11:51 AM »

I am three years post-transplant and have had very few issues. The first year was figuring out the meds and dealing with the BK virus but I have not had any issues which I consider big. Just this month I seem to have entered UTI hell--third one in a month--and have just been diagnosed with osteoporosis but at 68 years old you can't put everything on a transplant. I eat a vegetarian diet similar to what Monrein described and exercise daily. My sisters both have been diagnosed with our family kidney disease and I would so hope they would be able to get a transplant. Don't you have to compare post transplant depression with depression while on dialysis? Those are the only two possibilities for us, right? Watching my mother struggle with dialysis the last years of her life didn't make that look like a better way to go. However, things happen and what is a walk in the park for one person can be a nightmare for someone else. I believe that for most people quality of life is better with a transplant but it's not the right answer for everyone. We can't know what that other path would look like for us.
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SooMK
Diagnosed FJHN/UKD 2009
Transplant April 2014
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« Reply #10 on: March 20, 2017, 12:53:03 PM »

I had no problems from my transplant Mine lasted 23 years.  The kidney came from my Mom so that helped make it a higher match.  Dialysis was very hard on me and caused me to have to use a wheelchair.  My leg muscles got weaker and weaker so at the end (the last week) I could only stand up for a minute or so and forget about walking.  The day after my transplant I was up walking with the aid of a walker.  I was never given an explanation as to what caused my legs to quit working.  I was just happy that they started to work again.  I took me about a year to get the back up to full strength.  I worked a very physical job for 23 years. I miss work but this time I am doing PD and my legs have not gotten weak this time.
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cattlekid
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« Reply #11 on: March 20, 2017, 02:27:07 PM »

I think I can be one of those people who have had very few issues.  I can't say NO issues, because I gained 50 lbs since transplant (have taken 20 off) but that is really of my own doing.  I have not found an exercise I enjoy and I am not one who knows how to stick to a diet.  I wasn't that kind of person pre-transplant either so that really never changed.  But overall, the biggest issue I have had has been a slight increase in blood sugar that I have managed by losing the 20 lbs.  No need for diabetes meds or insulin.  But overall, I have not had any issues that have had me in the hospital or even anything other than basic checkups and I am one month away from my 4-year anniversary.

I ask because i posted a video 7 months ago about my transplant journey and things that i wasn't told of that i experienced post transplant. Someone commented yesterday saying they know a few people who have had transplants and they are thriving. No depression post tx no med issues nothing. I find this very hard to believe. That with a life saving surgery and a copious amount of medication everything is sunshine and rainbows. I could be wrong and know everyones experience is different. But i honestly want to know have any of you here had no issues what so ever.
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tigtink
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« Reply #12 on: March 20, 2017, 06:15:15 PM »

It is great to hear from those of you who have had successful transplants. I have a couple of follow up questions: How is your general health and energy level compared to when you were in the 15% range pre-dialysis? Is it better or the same? Do you still have the same level of anxiety with the monthly blood tests or does it lessen a bit over time? I'm just curious about quality of life pre vs. post transplant.
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cattlekid
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« Reply #13 on: March 21, 2017, 06:45:11 AM »

Personally, my general health and energy level is 1000% better than when I was pre-dialysis.  I didn't have that slow slide to dialysis like a lot of people. I went from a creatinine of 1.2 to a creatinine of 9 in less than 6 weeks.  So needless to say, I was a pretty sick person when I started dialysis.  But there were signs even before the quick decline.  I had developed migraines, restless leg, had no appetite and no energy.  But I dragged myself to work every day and had no capability to do anything else.

Now, I still work full time but I have plenty of energy in the evenings and weekends to do what I like.  My hemoglobin is at the correct levels, my creatinine fluctuates around the 1.3-1.5 level. I don't nap any more on the weekends unless I had a really late night the night before.

As far as anxiety with the monthly blood tests, I really don't have any issue with them.  My results are very stable.  The only area that I am slightly concerned about is my blood sugar, but even that stays in the 100-110 range and I only get that tested monthly too.

It is great to hear from those of you who have had successful transplants. I have a couple of follow up questions: How is your general health and energy level compared to when you were in the 15% range pre-dialysis? Is it better or the same? Do you still have the same level of anxiety with the monthly blood tests or does it lessen a bit over time? I'm just curious about quality of life pre vs. post transplant.
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MooseMom
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« Reply #14 on: March 21, 2017, 08:52:03 AM »

Unlike cattlekid, I was one of those patients who was in "pre-dialysis mode" for years, and it was hellish.  My medical team and I really had no idea how quickly my numbers might decline.  When I started seeing a neph, he was convinced I needed to get on the tx list asap, but in the end, six years passed before I was "sick enough" to be eligible for listing.

I never felt physically unwell before tx, but looking back on those years, I am certain that I was suffering from clinical depression.  I developed insomnia.  I was a basket case.  It didn't help that my mother ended up on dialysis (for a completely different reason), and her experience terrorized me in my nightmares.  Whenever I had labs, I suffered from so much anxiety in the time before I got results that I finally had to get a prescription for Xanax.  I knew my numbers would never improve, and that makes for a unique sort of horror.  The best I could hope for was for my numbers to remain steady. 

The day I finally had to get a fistula created was probably one of the worst days in my life because I knew I was crossing the Rubicon.  I sobbed so hard that I begged to be put asleep for the procedure.

All of the meds you take pre-D won't prevent your kidneys from failing.  All they do is give you a modicum of protection against the bodily assault that comes with kidneys that are never going to get better.

Of course all of this depends upon what is causing your kidney function to decline in the first place.  My underlying disease meant no cure and an assured date with some sort of RRT.

Transplant has changed my life and my view of my future.  I feel like at least I HAVE a future.  Of course I know that tx is not a cure, that it is only a treatment.  I know that rejection is always a possibility.  But while I knew that nothing could stop my native kidneys from failing and that it was only a matter of time, with a tx, I feel like I have some control.  Taking my meds properly is the greatest protection against rejection.  Psychologically, it makes the world of difference to me to be able to DO something beneficial for my health instead of being doomed to just waiting for the inevitable.

Yes, I get nervous before each lab result, but it's NOTHING like before tx!!

I hope this helps.
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tigtink
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« Reply #15 on: March 21, 2017, 09:59:07 AM »

Thanks, cattlekid and MooseMom. Sometimes I struggle with how realistic my hopes for a transplant are in terms of ending up better than I am now. I am lucky to feel reasonably well at this point, and I have a pretty good quality of life, but the waiting and uncertainty of knowing my kidneys will eventually fail is maddening at times. Given that I don't know for sure if or when I might get a transplant, whether I will remain off dialysis in the meantime, and whether the transplant if it comes will be successful or how I will react to the immunosuppressants, I wonder sometimes if I am just kidding myself that things will ever get easier. It is such a struggle to balance staying hopeful for the future with accepting that I have a chronic disease that cannot be cured and remembering to live in the moment instead of an imagined future. It has been so many years now since my kidney function has been relatively normal (I looked it up and 20 years ago my creatinine was about 1.5) that I have no real memory of what it feels like to have good kidney function. I know that having this level of toxins in my body for this long has to be doing damage. I hold on to the hope that I will indeed get some energy and well-being back after a transplant. But there are so many unknowns. It helps to know that for some it really does lead to a better quality of life.
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MooseMom
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« Reply #16 on: March 21, 2017, 12:43:35 PM »

Oh, tigtink.   :cuddle;  I could have written this myself as it mirrors exactly how I felt before my tx.

The uncertainty is maddening.  And frightening.

I think it is hard for most people to "live in the moment".  Most of us have some source of anxiety in our lives that makes us forget to live in the now and not in the tomorrow.  I know I couldn't do it, and I wasted 8 years of my life by looking only at a presumably bleak future.  I tried really hard, but more often than not, I don't think I succeeded. 

There is a reason that so many people are hoping for a transplant.  If it always ended in disaster, or if the meds always caused side effects that were so awfully dire, transplant would be off the table for everyone.  Most people do not go online to wax lyrically about how wonderful life is with a transplant because they are off doing better things with their lives.  The transplanted people you will hear the most from online will be those who have had an issue, so it is easy to get a negatively tilted view. 

If it were unrealistic to expect a better quality of life after a transplant, then I don't think it would be an option in the first place.  But feeling reasonably well right now is something to be celebrated and cherished.  I wish I had taken this advice back before my tx.  I was my own worst enemy.  I DID try various methods to help me cope better.  Some worked better than others, but nothing really erased the anxiety except to get the transplant I had worked so hard to get. 

I'm not sure there are THAT many unknowns with transplant, actually.  You already know about the meds and exactly how they work.  There is plenty of information online, and I'm sure your tx center will work hard to educate you.  UW Madison gave me scads of information in a big binder that I still have on hand.  You'll have monthly labs, so you'll be able to see exactly how well things are progressing.  This will be all new to you, but your tx center will have pretty much seen it all.

As for possible long-lasting effects of having toxins in your blood, I've wondered the same thing.  I was first diagnosed with fsgs back in 1992, so it has been decades since my renal function has been anywhere near "normal".  However, as you know, you have to be reasonably healthy to get on the list in the first place, so I figure that my body as a whole hasn't been so severely damaged.

But yes, nothing is 100% certain, neither with transplant nor with any other treatment of any other disease.

We understand exactly how you feel because we've felt it ourselves, but we can tell you that yes, there are many reasons to be optimistic in a post-tx life.  I just wish I could give you the magic words to take away your dread and anxiety.  I never found those words, myself.  I wish I had.
« Last Edit: March 21, 2017, 12:46:15 PM by MooseMom » Logged

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