| Author |
Message |
rew1000
Member
Username: Rew1000
Post Number: 1
Registered: 06-2010
| | Posted on Wednesday, June 02, 2010 - 04:41 pm: | 
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Hello Everybody
I had a kidney transplant on05/20/2009 a little over a year ago and my creatinine has varyed from 1.3 to 2.0 usually 1.3 to 1.7. And I'm ok with that the problem is i am getting tired of everytime it goes over 1.7 that stick me in hospital do byopsys and never find anything wrong. I think and my local doctor thinks that is where this kidney will function at. He is ok and I'm ok with it. I feel great. the thing is the transplant unit wont totally release me until my creatinine stabilizes. I dont think that will ever happen so think i am in a 3 month go to transplant unit,get put in hospital do biopsy find nothing wrong. Is there a way of getting out of this loop, hard to keep a job doing this. Its got so bad I worry a week before going in to the transplant unit for my appt. that they will find something wrong and they always do. in between my doctor says everything is stable. They wont even talk to him. |
Jason
Member
Username: Jason
Post Number: 11
Registered: 02-2010
| | Posted on Wednesday, June 02, 2010 - 05:26 pm: |
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Hi,
I would make sure your well hydrated ever time you get your creatinine checked. It will make a difference if your not hydrated. |
rew1000
Member
Username: Rew1000
Post Number: 2
Registered: 06-2010
| | Posted on Wednesday, June 02, 2010 - 05:53 pm: |
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Thanks Jason I always drink a quart of water before I go dont think thats it. One other thing I dont like about the transplant unit is they are on a rotation and you never see the same doctor and one doctor says one thing the next doctor says something totally diffent and i think every patient is different so knowing the patient would be important I think. my doctor dont think I have a problem and I trust Him. He use to be part of shans transplant team at gainesville fl. and is very knowledgeable. the doctors at the transplant unit keep changing out and are young guys and think because they dont know my creatinimne fluxuates they panic and make all these unnessary changes. I keep metioning may changing meds I have read other posts that patient have had luck with this,but this transplant unit stick whith same meds. I take Myfortic 360 3 times daily, prograf varys but is 3 morning 3 evening now, and 5mg prednisone. |
CiscoKidney07
Forum Leader
Username: Gregg
Post Number: 3586
Registered: 03-2008
| | Posted on Wednesday, June 02, 2010 - 06:07 pm: |
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Do you make sure that you are hydrated all the time and not just when you are going to your appointment? That does make a difference. We try to make appointments on the same day at the same time. That way, you will probably see the same doctor, or maybe you should try to see one doctor. Just a suggestion.
| There are not too many things in life worth working my butt off for, but my health is one of them |
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rew1000
Member
Username: Rew1000
Post Number: 3
Registered: 06-2010
| | Posted on Wednesday, June 02, 2010 - 06:16 pm: |
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I drink alot of water and really nothing else but I do have alot of diarrea due to myfortic so maybe I'm not drinking enough. As far as changing doctors they work on rotation and assisn you to a doctor when you come in so no way of changing. I have asked what doctor it is and asked to be changed they said cant change unless i reschedule my appt. and I live 1 hour away and did change once but still ended up with a doctor i did not want. |
CiscoKidney07
Forum Leader
Username: Gregg
Post Number: 3587
Registered: 03-2008
| | Posted on Wednesday, June 02, 2010 - 07:13 pm: |
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See if there is something they can do about the diarrhea. That is not a good thing to have as a kidney patient. You understand, I am throwing out suggestions in order to help with the problem, I hope. I would hope that the doctors would try to work with you on this one, my friend. If not, you might even look into a different center.
| There are not too many things in life worth working my butt off for, but my health is one of them |
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rew1000
Member
Username: Rew1000
Post Number: 4
Registered: 06-2010
| | Posted on Wednesday, June 02, 2010 - 07:39 pm: |
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ok thanks when i go to transplant center they put me on myfortic 360 3 times daily. when i return to my doctor he changes me back to myfortic 360 twice a day. They said the other alternative medications are worst than myfortic. I think if i get away from transplant center everything will be ok. just wanted to know if anybody else has had similar issues. |
ed
Member
Username: Ed2001
Post Number: 45
Registered: 03-2010
| | Posted on Thursday, June 03, 2010 - 01:28 am: |
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Hi,
I can relate to your experience, during the first 6-7 years of my transplant I had a similar experience with yours and my doc always said 'things are stable'. I knew it wasn't good that my creatinine kept fluctuating as others didn't have that problem, but didn't know any better and stayed with him for a long time.
My lesson here is look for a better doctor. And if you say they rotate doctors on you. The moreso, I say move. My reasoning is that we need docs who know our history and how our body responds to things. And if they keep switching docs, it's like getting a new doc each appointment.
You may want to research on other transplant centers if that is possible.
In the immediate term. your main problem will be keeping hydrated. How much fluids are your drinking? How watery are your stools and how many times do you go in a day?
If you are having diarrhea, make sure you are drinking 3-4 liters daily (depending on how many times you go). Dehydration will mess up your creatinine, and if you let it get bad enough it can permanently damage your kidney badly.
Your other probem is solving the root, which is likely the myfortic. I'm assuming you don't have any infection or stomach bug that is causing the diarrhea. If so, then it may not be the myfortic.
If it is the myfortic, one option may be as you said lower the dose. But this isn't always an option, because too low a dose may lead to rejection. So you need to trust the doc if he doesn't want to lower it.
The alternative your doc says to myfortic is cellcept. In theory, cellcept does have a better probability of causing diarrhea. But I've seen a couple of guys do better on cellcept than myfortic for diarrhea.
One possible option is going back to an older drug called imuran. This is what they used as myfortic or cellcept before cellcept was invented. This doesn't cause diarrhea, but is considered a less effective drug compared to cellcept. But I know a lot of people on imuran that are over 15 years post transplant and doing well.
One road less taken is switching myfortic to something like rapamune.
These are some options you can talk over with your doc. But make sure you drink a lot of water in the meantime and do not let go of this situation until it is fixed.
It's good that the biopsy says all is good, so things are still ok. But the creatinine moving like that isn't right.I know because I've been through that and believe me if you leave it at that it will get worse.
Kidney Transplant
April 2001 |
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rew1000
Member
Username: Rew1000
Post Number: 5
Registered: 06-2010
| | Posted on Thursday, June 03, 2010 - 01:06 pm: |
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thank ed, having my blood retested tommorrow if creatinine dont come down they will do other test poss.another biopsy. will let you know how it turns out. |
ChuckZ
Member
Username: Chuckz
Post Number: 930
Registered: 05-2006
| | Posted on Friday, June 04, 2010 - 04:39 pm: |
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I would try to be very consistent in everything that you do, eat, and drink for the twentyfour hours before your test:
1 Drink 3 liters of water during this day.
2. Minimize caffeinated beverages of all types and avoid alcohol.
3, Avoid activities which cause excessive perspiration.
4. Do not eat anything after 7:00 or 8:00 pm. Avoid eating a large quantity of animal protein the day before testing.
5. Get your blood sampled as close as possible to the same time.
6. Take your evening immuno meds exactly 12 hours before you have your sample drawn.
7. Use the same lab every time.
I am a chemist and there are many factors which can affect the tests in the lab. If you do not keep your body and habits as consistent as possible, you add to the variability of the test. Some doctors do not have a good feel for this concept and tend to over-react to changes which are normal. They will make adjustments to your meds which are not necessary.
I always have my blood tests done on Monday because Sundays are quieter days for me and I am in better control of my diet, hydration, and activities.
Chuck |
rew1000
Member
Username: Rew1000
Post Number: 6
Registered: 06-2010
| | Posted on Friday, June 04, 2010 - 05:05 pm: |
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Well my blood tests were stat so I got results creatinine it was 1.7 down from 1.9 so now they will just continue checking my bloods monthly. So thats good news. Wish my creatinine would stablize, but its been over a year and I guess will always run 1.3 to 2.0. I am going to try some of the suggestions from chuckZ to see if that helps. I live in florida where its very humid so you do sweat alot. so maybe I just think I'm drinking enough water. Anyways thanks to everybody for your advice. |
Robbin
Member
Username: Rlk061955
Post Number: 17
Registered: 03-2010
| | Posted on Wednesday, June 09, 2010 - 02:25 pm: |
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Chuck,
Thanks for the reminder about being consistent with lab draws. it did make a differences with my daughter!!!!!!!!!!!!!!! |
rew1000
Member
Username: Rew1000
Post Number: 8
Registered: 06-2010
| | Posted on Tuesday, June 22, 2010 - 07:49 pm: |
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Well ChuckZ I did everything you said did my labs today, hope it works and my creatinine comes down. will let you know |
rew1000
Member
Username: Rew1000
Post Number: 10
Registered: 06-2010
| | Posted on Saturday, June 26, 2010 - 12:39 pm: |
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got labs back 1.6 still must do labs monthly |
Boop
Member
Username: Betty
Post Number: 62
Registered: 08-2008
| | Posted on Sunday, June 27, 2010 - 05:12 pm: |
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I stayed "overhydrated" during the inital phase post transplant. Like 100 ounces a day. Spent a lot of time in the bathroom. I also had some diarrhea with Myfortic, and had it adjusted on at least 3 occaions, that why the inital frequent lab work is such a pain, but it's sooo worth it. I just had a bump up in creatine by 0.2 and my doctor lowered the ARB and repeat level back to where it was! I was freaking out about it at the time since I'm also on prograf. I go back to the transplant center in about 3 months for 6 year! follow up in September so thing of course are expected to change. Try to remain optomistic. And remeber that life is good
Boop
polycystic kidney disease
living organ recipient 9/30/04
Lifelink/ Tampa General Hospital |
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ChuckZ
Member
Username: Chuckz
Post Number: 932
Registered: 05-2006
| | Posted on Sunday, June 27, 2010 - 11:47 pm: |
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REW
Having a 1.6 is not too bad. You mentioned that you are on monthly lab. This is normal for most folks at most centers, for the life of their transplant. Try to be consistent the next three months and report back the results. The average of your last five results should give you an idea of what your "true" creatinine level is assuming that nothing else happens.
Chuck |
rew1000
Member
Username: Rew1000
Post Number: 11
Registered: 06-2010
| | Posted on Monday, June 28, 2010 - 12:54 pm: |
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Thanks ChuckZ
Boop - I also have PKD and my transplant center is also Lifelink tampa. I was transplanted on 05/20/2009.The only think I don't like about lifelink is you see a different doctor all the time because they are on rotations. Some doctors think I have no problem and then next time in I get a diffenrt doctor that goes into a panic about my numbers. Wish you could only see one so they could get to no you because everybody is different. My doctor in lakeland thinks my numbers are fine. |
