Hey guys, first post here, i was wondering if its normal to have 1.51 - 1.55 creatinine. I been having this level since transplant (almost 3 years ago). My doctor said was ok to live with that level but might go down in time and said that might be cause my sister (the donnor) was a small and iam pretty big . Now i have a new doctor and he is worried for that level and said thats its not normal at all cause he even do transplants from kids to grown man and there is no problems like this.
thanks in advance for the help
rod
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I'm 5 years post Tx and my creatinine has been between 2.0-2.3 for most of that time -- over the last year or two it's dropped to around 1.9, but it might just be that we each have different baselines.
Hello SoCal1, curious question, do you have fatigue all the time, or can you do physical things you did in the past prior to decline of kidney function. thanks
Hello Gardner-NY. With my PKD the kidney function was degrading slowly for many years. I played competitive soccer until my creatinine increased above 2.5 (I was in mid fifties at that time). I got obvious fatigue issues only at levels ~3.0. Creatinine level dropped to 2.0 in one month after surgery; to 1.7 in 6 months; to 1.5 in 2 years and now settled at 1.3 after 7 years.
HI Transplant 2014: Wow, soccer. Can you coach or play now the game ? My spouse has PKD genetic diagnosed during a CAT scan at age 30 and going through chemo for hodgekins lymphoma. 8 yrs later his function was down to 51% when we both retired from our military careers. At transplant he was age 59 and function 13%. First year after transplant a low grade rejection, white and red blood cell counts super low, CMV virus and so he was a couch potato that entire year. Jan 2020 his blood chemistry for the first time and CMV was gone, but the fatigue is still there. He was very active doing all kinds of hobbies including hiking and fly fishing and more and now nothing. He gets around our home fine and physically he is not active. I cannot get anyone to tell me if this is normal. I've done lots of medical research on the topic and find 40-60% of people years after transplant have fatigue that does not improve. Can you share with me more information? thanks
I see that your husband had some significant complications after transplant surgery. So his situation is probably quite different from mine. I hope that your husband feels better. I've been lucky so far, as I was relatively healthy before the transplant surgery, except for PKD, and post-transplant period went smoothly. I was always athletic (track and field, soccer etc.), but now I stay away from contact sport - that was advised by my doctors after transplant. However, I still participate in Track and Field competition time by time. For example, every two years I participate in all-American event called "Transplant Games". This is actually huge event where hundreds athletes (transplant recipients or Transplant Donors) compete in different disciplines. Unfortunately last Transplant Games were cancelled because of Covid. As for everyday life I think I am not much different from my friends of the same age.
Hello Transplant 2014, glad you are doing so well after your transplant and able to do many things you did before in athletics at some level. The first two months after transplant my spouse felt better and good and more energy than ever (Prednisone probably helped with that), and then a cyst burst in native kidney (first in his life to happen), then 2 wks after the low grade rejection along with major red blood count numbers for 8 months then CMV before red blood count issue was resolved and immediately after finding CMV the white blood count problems. For a solid year he was just about a couch potato, so very unlike him. I so wished that his transplant doctors would have pushed last year for some kind of physical therapy but they never did and I asked but I think I asked when his health was so bad and then I was shut out of the meetings by phone with them to be involved in care. I'm just so very disappointed with my spouse' outcome of the organ for he feels worse now everyday instead of better though the blood work shows good things. My spouse has resigned to accept his situation. I'm just strongly disappointed 'we ' cannot resume onward
Hey SoCal1 I have a similar story, I received my kidney from a young 20 year old male in 2017 & I was 45 at the time of my transplant & I have been as high as 2.0 & as low as 1.5 so my transplant team told me 1.5 to 1.8 is my baseline & take care of myself, eat a good diet, exercise, drink plenty of water, get a good sleep routine & live my life & enjoy this gift I’ve been giving & that’s what I’m doing because like you said SoCal1 we all are different what works for one might not work for others
Each of us is Different, sometimes 'Very Much So', and Creatinine is Not the only Factor- not by any means. Your 'Overall' Health IS the 'Main' Factor....not that Blood Results aren't important, of course!
When I was 'Pre-Dialysis, which I was for some years, My Creatinine was 'All Over The Place', my 'own' Doctor(s) were Well Aware of this. However if a 'New' Doctor Looked at a 'Random' result..... well, let me say 'Rather A Panic' ensued. My 'own' Doc would say "You've gone 'Up' again.... no doubt you'll Come Back Down" and I did.
Inevitably I did, after almost ten years, 'end up' on Dialysis for- almost exactly- four years. Receiving a Transplant, 'way back', in July 2013. My Creatinine can still 'Leap About', on occasion, but tends to remain 'more stable' now.
Do 'Check' with, your own Transplant Team, just To Be Safe but Don't worry to much, my friend. Sending you my, indeed all our,
Hi AndrewT, do you have fatigue most of the time after the first year of your transplant? Trying to find someone similar to my spouse who has fatigue for 2.5 yrs after his transplant without a positive change though blood chemistry this past 1.5 yrs has been good 'finally'. thanks
My answer is, quite probably, going to be a little 'Useless & Contradictory' to you- but not deliberately- let me explain.
My Vasculitis 'attacked' my Brain, Heart & Kidneys and, because of the Brain Damage, has caused Fatigue Problems, as a direct result. 'So Did My Transplant Increase Fatigue', is a difficult question.... on balance 'Probably Not By Much, If At All' is a reasonable answer- notwithstanding 'fatigue/ tiredness' caused by the operation itself.
Bare in mind that a Kidney Transplant IS a Serious Operation....Ok NOT quite Open Heart Surgery but clearly NOT Ingrowing Toenail either. On a 'Scale' of one to ten, it's about seven- or even eight!
I would suggest, maybe a 'Chat', with your Wife's Transplant Team- Covid notwithstanding- or even your own GP. Ask for Blood, Urine- even Poo- samples to be taken- just to Check for any obvious 'Problems'. Beyond That I can't really 'Offer' you, or your spouse, any further advice, I'm afraid.
I am however sending you both 'All My Love & Prayers'.
HI AndrewT, I can tell you have a good sense of humor in how you write. I was not talking about having fatigue the first year after transplant, I am talking about 2.5 yrs after transplant how are you getting around? Can you do the hobbies you love that are physical? The first year after my husband had his transplant at age 59(he has PKD) and both native kidneys were left in his body, he had a low grade rejection, white and red blood count numbers so high/low I was giving him injections, and CMV virus. He was a couch potatoe the first year after transplant. After Jan 2020 he finally had everything in blood chemistry "normal", but the fatigue is still there. He feels worse now than before the transplant. We both had active /physical military careers and retired , so we are used to being on the go; but now for 2.5 yrs we go and do zero together due to his fatigue and covid of course. Can you relate to a year after your transplant how you physically were active or not? I truly appreciate your experience.
about a year, maybe eighteen months, after my Transplant I took to going to the Gym- they have a 'GP Referral Scheme', which then allows for a Full Physical assessment. Following this assessment a Series Of Exercises is recommended, to be 're-assed' every few weeks/ months. I progressed, from there, onto a Membership, that gave me access to the Pool, and Spa. The Headway Group, that I used to attend on a Tuesday, also had an Exercise Session- run by a Nero-Gym. As regards 'How I Felt', well clearly Able To Cope with this regime.
As I said, in my first reply, Everyone Is Different (cue Monty Python.......) so it, really Is Difficult, for me to Comment 'beyond' what I have already said.
I agree that maybe there is a 'Low Grade' Rejection, if so DO speak to the Transplant Team, as 'They' have Notes Specific to YOU.
As regards 'Hobbies', beyond Art and other 'At home' activities, it's been rather Difficult- especially as I was in the Shielding Group. Yes a Few Pictures, a little Poetry and Prose (I suppose!) I have Re-read a few books, I first read in my Teens... an interesting experience, exactly the same...but different. I have both Listened to, and extended, my Music collection as well as buying some new (older) films... if that makes sense???
My base line after a year was around 1.4 and then I dropped and then went up. My transplant kidney doctor and my original kidney doctor reacted differently. One was cautious and one not so much. Both are good doctors. Sometimes it just takes time to determine the best answer but it's nice to have a second opinion.
My spouse at age 59 never on dialysis had his first kidney transplant from a deceased person 2.5 yrs ago. The creatinine was all over the place along with his blood chemistry for a year and since Jan 2020 things have leveled out finally after being on a severe ride on a roller coaster. His creatinine stays 1.9 to 2.1. Everyone is different and other factors play a big role in how the kidney is functioning. Having other transplant doctors involved is a good idea not just one person. From what we have learned it is a trend of watching the numbers along with other factors in the blood chemistry. I truly wish you well. Do you have fatigue most of the time?
I just had my transplant a month ago. I am a very inquisitive person. And I found a Nephrologist 14 years ago that takes time in answering all my questions. The way he explains this to me:- the kidney function's assessment is a lot more that creatinine. It includes eGFR, urea, etc.
- the assessment is not one snapshot. It is a series of results that tracks the trend.
- Since I am a new transplant, he needs to find the right mix and match of meds (focusing on immunosuppressant)
- The metric for the right meds combination is the Tacrolimus level. He wants it closer to the 5 level (than the max of 8). So he adjust the immunosuppresantt (particularly prograf) depending on the Tacrolimus level.
- When its high, the creatine level is high and he reduces the prograf. And so on with the other meds
- He also mentioned that he needs to balance the creatine level, EGFR, etc. with the medications - with my initial baseline (he created a range).
So, the solution could be different for everyone - each case is unique.
- And If your Neprho does not give you the right answers or at least gives you a peace of mind, time to get a 2nd opinion. It is always a choice
Did your new doctor say why he is worried? Is he a transplant nephrologist? If your creatinine has not changed in 3 years out of your baseline range, you are doing VERY well. Please don't worry.
Mine in the almost 11 years since my transplant has bounced between 1.2 and 1.7 and I'm told both the numbers and the variability are normal. Creatinine tests also quite influenced by the amount of recent hydration. Also, if, say 1.0 was normal, 50% function would be 2.0. So a number in our range makes perfect sense; after all we just have one.
My doctors say the same. Everyone is different and they have no idea where creatine will land. I do know that the more water the less my creatine before testing.
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