Hi, I am new to this forum. I've been reading several posts and learning a great deal.
Just a little background info; I have "Severe and Chronic" Sarcoidosis, which destroyed my lungs and lymph system.
I had a Double Lung Transplant in October of '08, which unfortunately did not go as well as we hoped. Due to severe internal hemorrhage just after transplant, I had emergency surgery to locate and fix the leak, ..they couldn't find it so they left me in chemically induced coma for two weeks, the first week spent with chest still open! Knowing they still needed to locate the leak, but because I was too weak they had to stop surgery and let me recover some before proceeding.
After pumping 28 units of blood in they were finally able to stabilize me and get me back to OR. They found and fixed the leak, but the time spent on by-pass, combined with complications (every thing that could go wrong, did)....I wound up with a clot in my Jugular, and various other clots. Couldn't dissolve them with blood thinners due to bleeding.
Anyway, after spending months in the hospital, undergoing another major surgery on my lungs to remove fluid, several bouts of pneumonia, suffering a stroke!, and then having my Spleen removed......I was also left with cognitive dysfunction from stroke, bleeding and time spent on by-pass. Result; I can't drive, can't work....spend all of my time at doctors or testing.
Now I have a question: " does anyone know why Creatinine levels might vary, not . I am talking about creatinine increasing for past year to 2.79, with some week to week variations of +\-.2 and in July my Nephrologist told us I had only 24% kidney function, Stage 4 GFR.
Recently, I have had 3 or 4 readings of 1.6 to 1.2. Any thoughts on what might cause this variation? Keep in mind I am on 3 different anti-rejection meds, all cause kidney/liver pronlems...heavy dose prednisone for 5 years, High BP 30 years, I get IVIG Infusions every other week for immunoglobulin Deficiancy, ......
Hi Mustang and sdurand, Mustang I bet you will live a long happy life! are you doing that pd type of dialysis? Or that overnight one? I would if I were you because apparently those people are much healthier and happier than the regular dialysis people. There is just so much technology and research that is actually producing results. I think a lot of that is due to the large amount of people who are being dxed with CKD now. My prayers are with you!
sdurand, the only thing I can think of about the creatinine is perhaps your diet? I am not sure about that but I do know that diet and fluids affect the protein in your urine. What I would do if I were you is do some research. You sound like you are very intelligent. You know your body very well. You sound like you like to know what is going on with you and your body. I admire that trait. I am the same way. People ask me "why do you go on those health boards? why do you want to find out scary stuff about yourself?" Uhhhh... maybe because I dont want to be ignorant and possibly let myself die because doctors only have 15 minutes to help me and they usually could care less and the people on boards are people who actually do care about others???? So do some research. There is lots of info on the web. google creatinine test results and variations and I bet you will find lots of good stuff. There are some websites that are devoted only to tests and explaining them. Good luck sweetie!!
I know it is frustrating not knowing what the future holds. None of us here nor Dr.s know or can guess how your health will decline. All any of us can do is follow your Dr.s advice and find a way to accept the reality of it. And try not to be worried about everything that might or could happen. Since you understand that ckd is not a death sentence, you will adapt to changes as they come your way. Heck, you may stay where your at forever! Why look for possible trouble? Your uncontrolled bp is not good and should be addressed. It might be that you need a different bp medicine. It often takes time to get the right med and dosage. Your stress level can hike up your bp. and it's clear your extrememly stressed. I have been stressed at times too and a kind, smart member of this board suggested I take a break from the forum for awhile. It really does help to take that time to relax, regroup and mellow out for awhile. You would be surprised at how much better you will feel. I wish you well.
I have stage 3 gfr 60 they wouldn't even referred me to a nephrologist until i started to feel a lil sick but when you do get referred its allot of test 24 hour urine's every 3 months kidney biopsy's that are extremely painful and scary!!!!! Just please count your blessings you don't have to pursue any care further care stop drinking soda and eat less meats and drink 12 to 8 oz water a day add juice and milk to your diet and of course lots of green vegges and maybe you you will slow it way down!!!!!
I am with you with your frustration. My son was diagnosed as CKD at twenty months this week and it was more like an after thought. The doctor gave NO information and when I called and asked for a referral to a nutritionalist so that I could slow the progression she said that with CKD stage 1 you don't need to see a nutritionalist because my baby is growing fine. Um okay, so if he is fine and his kidney's are fine and we are going to do absolutly nothing about it or his HBP then why give a diagnosis at all???? So I am with you.
Sometimes I wonder if there are doctors that really do not want to give any other alternatives besides prepare for dialysis. I was at stage 5 And hours from going on dialysis and my NEPH. Dr Heather Leftkowitz from New Jersey found exactly was wrong. That was 12 years ago. I am at stage 4 and doing very well. The last thing she wanted to do is put me on dialysis, her team worked very, very hard to save my kidneys. Even though I have been at stage 4 going on 12 years, I have not had not had one since problem. My creatine is stuck around 2.8 and my eGFR is at 31 and I feel fine.
My creatine is about 2.1 and has come down a bit. GFR is 25 or so. It turns out that I have one good kidney and the other one is only operating at 2%. I feel fine - blood pressure good, no diabetes. I do get tired and need a bit more sleep and rest. I did not realize the importance of the diagnosis when I first got it 4 years ago. One doc says dialysis or transplant and another says, it's my new 'normal' and I'll be good for another 20 years - I'm 60 so that's not too bad a prognosis!
The diet is what has me spinning. I'm not really sure what I can and cannot eat.
"irishrooster" : Hello! I'm new at this site and so far am loving that there are so many other people that I can talk to who will understand what I am going through. I sincerely hope you feel the same way and know that you now have many new friends to talk to to help keep your spirits up. I was diagnosed with my disease 18 years ago and am in stage 4 of CKD. My GFR is between 21 and 23 (depending on which appointment you look at) which is borderline being put on the list according to my doctor and transplant team. Unfortunately everyone is different and no one can really tell you how soon your kidneys will fail. I was told I would need a transplant by the age of 27 and I'm 32 now with no dialysis or transplant. I think in my case trying to stay healthy the best I can and trying to keep a positive attitude does wonders, although I completely understand how hard it can be. I was diagnosed with major depression myself and went through a period of some pretty bad thoughts. I hope that you feel or will feel that you can open up to us and not be judged or not feel that you will be left. You have been through a lot and need people you can talk to.
I hope this helps a bit...