georgie1111

Newbie with Diffuse Scleroderma

21 posts in this topic

I am so grateful for this thread. :thank-you-2: There's always hope. Dialysis is awful but it does keep you alive. It seemed to me that only a couple of people had renal failure here and one that I know of passed away, a wonderful contributor to this site, Sherrill Knaggs, who helped me through at the beginning. She did beautiful artwork that you will find throughout the site among other things.

 

Hi, Jeanann, I see you figured it out. :happy-dance: Good to see you here!

 

Georgie, to private message someone you click the little box to the right of their sign in name. You filled me in but I am always willing to hear about this.

 

 

Amanda, how many years did it take for them to come back? One of my nephrologists said he knows a woman whose came back after 3. I kept on hoping but after a year pursued the transplant route.

 

The biopsy is scheduled for Wednesday. I did all the pre-admission blood work and my nephrologist called today. (He's great!) My creatinine has dropped again to 1.3. (American levels are .1-1.2 for normal function). He had no concern about my GFR. He feels certain it is prograf toxicity and reassured me that is is not resembling scleroderma renal failure :happy-day: which he described as extremely high blood pressure with a sudden stoppage of the kidney, exactly what happened to me but the only way to tell is the biopsy. He gave me the option of going ahead and having it or changing the med dose and seeing what happens. Although I REALLY don't want to have to do this, and although I am suffering anxiety, and probably have over researched it, I am mentally prepared and have planned for it so I decided to do it. I also pulled the all too famous, "What would you tell your wife to do if it was her?" He said to do it. My transplant center does not do protocol biopsies, which means they would biopsy you at 3 months, 6 months, 12 months regardless as to how you are doing but he said they were leaning toward it as it shows problems early on and extends the transplant. He is changing my dose anyway so we'll see. If I waited until next month and my creatinine changed again I would just have to go through all of this anxiety again.

 

I'll keep you posted.

 

miocean


ISN Artist

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Georgie, how long were you on peritoneal dialysis (PD)? I have been on PD since September of 2011. I am urinating more and my creatinine dropped last week so we are watching things closely.

 

To all: If anyone has any details on the return of kidney function I would love to hear! My nephrologist says no way and my rheumotologist says to hang in there and not to give up hope. I would love to know what to look for, as my kidney doctor is not knowledgeable about scleroderma. So good to talk to others who have gone through renal crisis.

 

Thanks,

 

Jeanann

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Here is a more direct link to Sherrill. Even after all these years I am still learning how to use this site. It really awesome to see what it contains.

 

miocean


ISN Artist

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Hi jeananne,

 

I did PD for about 10 months, I don't recall any symptom change that would have told me my kidneys had improved; it was discovered by accident when I started to leak from my vagina and dialysis was stopped. That's how I found out as my kidneys worked on their own, but you can find out by those 6 monthly checks, (can't recall what they are called ) but it's when you have to save all your used dialysis bags and do blood tests and they test and weigh those bags; they can tell from that test how your kidneys are doing under dialysis.

 

If your renal specialist finds it hard to believe perhaps you should suggest to him to email renal specialists at the Monash hospital as it was them and the renal nurses who told me that when the attack on the kidneys stops inflammation can go down and renal production goes up; not in all cases but there is hope, so if he hears that from other professionals rather than a patient he might take it on board and watch for improvements in renal patients who have scleroderma.

 

georgie

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Thanks Georgie. I will give it a try. Where is the Monash Hospital? I am so glad your kidneys kicked in and hope they continue to improve for you.

 

Janet - Please let us know how the biopsy goes. I think it will put your mind at ease. JeanAnn

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Hi jeananne,

 

I managed to remember the name of that test that tells you how well your kidneys are doing with dialysis; it's called a "PET" (Peritoneal Equilibration Test). You have blood tests, your dialysis bags are saved, weighed and tested, as is your urine saved over a 24 hour period for weighing and testing. They can tell by all these things what your kidneys are doing.

 

Monash hospital is at Clayton, Melbourne, Victoria, Australia.

 

Good luck jeananne

georgie.

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