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Newbie with Diffuse Scleroderma


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#1 georgie1111

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Posted 09 July 2011 - 05:19 AM

Hi everyone ,

I am new to this site but not so new to scleroderma , I have diffuse sclero and last year I went into scleroderma renal crisis.

Has anyone else here had renal involvement?

georgie1111

#2 Joelf

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Posted 09 July 2011 - 11:30 AM

Hi Georgie,

A warm welcome to these friendly and informative forums!

I'm very sorry to hear that you've been diagnosed with Diffuse Scleroderma. Thankfully, I don't have Scleroderma renal involvement so can't advise you from my own experience; however, I've included a couple of links to Renal Involvement and Scleroderma renal crisis which I hope will be helpful to you.

I'm sure we have had other members who have experienced renal involvement and so hopefully they will be able to give you some first hand information. Do please keep posting and let us know how you're faring.

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#3 Amanda Thorpe

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Posted 09 July 2011 - 11:54 AM

Hello Georgie

Welcome to the forums! There are some others here who have had a renal crisis before and they'll no doubt join in shortly.

How are yu doing now since the crisis?

Take care and keep posting.
Amanda Thorpe
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#4 georgie1111

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Posted 09 July 2011 - 07:10 PM

:thank-you: Hi Jo and Amanda thanks for your warm welcome ,

I'm faring OK; I did do dialysis for quite some time but complications set in and dialysis had to be stopped. I was doing peritoneal dialysis at home; scleroderma has done too much damage to my body so I can't do either forms of dialysis hemo or PD. I was one of the lucky ones though as the renal doctors said when I had to stop dialysis that in some cases where people lose renal function due to scleroderma that after a time on dialysis, the sclero attack on the kidney stops, the inflammation on the kidneys can go down and kidney function can rise, so luckily for me I was in that bracket so I have been running on my own kidney function for just over a year now. Doctors don't know how long my damaged kidneys will cope, my GFR is 25 which is not too good so I am now under palliative care.

I am doing well still and hopeful that my kidneys will keep chugging along for some time yet ..... again ladies thanks for the warm welcome ..georgie :thank-you:

#5 miocean

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Posted 09 July 2011 - 10:52 PM

Dear Georgie,
I am one of the unfortunate ones that lost my kidneys :temper-tantrum: but unlike you my kidneys did not come back. It is debatable now as to whether or not it was actually scleroderma renal failure or cardiac related even though I was diagnosed with diffuse scleroderma prior to the failure and the biopsy of my native kidneys showed scleroderma renal failure.

I did 5 1/2 years of in center hemo dialysis with a catheter as my vascular system is not strong enough to support a fistula or graft. My sclero specialist advised against peritoneal due to risk of infection but catheters get infected too as I learned from experience. I received the gift of a kidney March 2010. My GRF has run around 50 since transplant. I am currently having some issues with creatinine levels fluctuating that might be toxicity to the anti-rejection medication so next week I am having a biopsy. It is unusual for scleroderma to attack a transplanted kidney, according to my specialist but we shall see.

What is your creatinine? Mine was 8 while I was on dialysis and had been holding steady at 1.2 for the past year but lately has been jumping to 1.6 then falling back then jumping again so the biopsy is to see what might be causing this. It could be something as simple as the hot weather has come and I'm dehydrated, even though I've been drinking a lot. Are you a transplant candidate?

Please private message me. You are so lucky your function returned even at that level. I would love to talk with you about what you have gone through. Fortunately, there do not seem to be many on the forum who lost kidney function and it is so encouraging to hear that yours came back.

This forum is the best place to be for support and the ISN site has a wealth of information. There are always people here for you.
:emoticon-hug:

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#6 Cheryl

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Posted 10 July 2011 - 01:20 AM

Hi Georgie,

I hope things are slowly improving. I had Scleroderma renal crisis in October 2009. It took a long time to recover, but I am slowly getting back to normal. I was luckily enough not to require dialysis, my kidney function reached 20% and is now around 50%; hang in there it will slowly improve and do as the renal doctors advise. I watched my salt intake, back to all home cooking and the meds also helped. I started Cellcept and take 3 tablets a day, can't handle high doses. The renal doctor said this would help with the kidneys and the Scleroderma.

My thoughts are with you and they are always making new improvements to help us cope with this disease.
Cheryl

#7 georgie1111

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Posted 10 July 2011 - 04:11 PM

:terrific: Hi Cheryl ,

Wow how fortunate you are to have come through sclero renal crisis with no need of dialysis, so pleased and relieved for you. When you wrote that your kidney function went down to 20% but has since risen to 50% once again shows that what the doctors said was true that there is some hope for those who get the sclero renal crisis. I, like you are living proof that when the attack on the kidneys stops the inflammation goes down and the renal function goes up, so it's hope for all those coming up behind us that there can be that light of hope at the end of the tunnel for 'some' of us' .

What is your treatment regime now Cheryl, is your creatine and urea levels comfortable and what about your blood pressure ? georgie

#8 jeanann

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Posted 10 July 2011 - 08:06 PM

Hi. I also had renal crisis and I am still dialysis dependent. I would be happy to help any way I can but I do not know much about it. Just hit me suddenly and I woke up 2 weeks later in ICU. I have opted for PD and hoping for the best.

#9 georgie1111

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Posted 11 July 2011 - 01:03 AM

Hi Miocean ,

This morning I sent you a big email just as I sent it my computer dropped out, so it looks like it has been lost in cyber space. I haven't worked out yet how to send a PM so I will have to keep to this method until I find my way around this site.

My heart went out to you to learn that your having complications after all you have been through; let's just keep our fingers crossed for that biopsy to come up with positive results. I have figured you must be from USA as creatine levels are counted differently here, as when I was in end stage renal failure my creatine was up in the high 400's now it is in the high side of 200's. The urea levels are high enough for me to have "renal fog brain" and I smell of it, it oozes through my pores and on my breath ugh!! I can't comprehend your creatine levels as it is so different to ours? Your GFR sounds like it is on the same scale as ours your GFR of 50 is good but not so good for a new kidney I bet you are very stressed worrying about it all. My GFR 3 months ago was 25, so not sure what it is now.

Miocean, you have come through the renal storm and come out the other side once before, so you can do it again if necessary, so hang in there, stay positive and keep up the fight ..... with your new complications what is your blood pressure doing and has the nausea kicked in? They are often good indicaters as to what is going on with your kidneys.

georgie

#10 georgie1111

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Posted 11 July 2011 - 01:16 AM

Hi jeananne,

I did PD too, how are you coping with it ? Are you on manual exchange 4 times a day 7 days a week or are you doing the over nighter? I did the 4x7 .. what hospital are you being treated from?

I have been off it for a year now but I still remember quite clearly how challanging it was, I had to go off it as the glucose started to leak out of my rectum, at first I thought it was urine I thought oh wow I got urine I was so excited so I rang the renal nurses and to cut a long story short, no it wasn't urine at all it was the glucose so dialysis had to stop immediately as if fluid can get out germs can get in , (peritonitis) it seems the sclero had done damage to my insides hence the leakage. It was a tense time waiting to see how my kidneys were going to cope once dialysis was stopped but as luck would have it they 'stepped up to the plate' and have been doing a good job since they are only now after a whole year starting to "wobble' a bit hence the reason I am under palliative care, but I got a year out of them so that was good ..... georgie

#11 Joelf

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Posted 11 July 2011 - 06:15 AM

Hi Jeanann,

Welcome to these forums!

Sorry to hear that you've also had renal involvement; I hope that the links I've included for Georgie will be of help to you.

Do please post again and let us get to know you. :emoticons-group-hug:

Jo Frowde
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#12 Sweet

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Posted 11 July 2011 - 09:55 AM

Hi Georgie!!

Welcome to the sclero forums!! :emoticons-group-hug:
Warm and gentle hugs,

Pamela
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#13 Chopper

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Posted 11 July 2011 - 01:44 PM

Hello! I'm adding my welcome!

Chopper
Limited Scleroderma, Hashimotos Thyroiditis, Celiac, Gastroparesis, GERD, and Gastritis.

#14 Sheryl

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Posted 11 July 2011 - 01:56 PM

Welcome's go out to both georgie1111 and to you also Cheryl.
May we all learn from each other.
Strength and Warmth,
Sheryl

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#15 Amanda Thorpe

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Posted 11 July 2011 - 03:42 PM

Hello Jeananne

Welcome to the forums! I have a friend who also recovered from a scleroderma renal crisis, she did peritoneal dialysis for many years and no longer needs to do so. It seems that anything is possible with scleroderma.

Hello Georgie

To send a private message, click on the drop down menu next to your name at the top left hand of the page, click on messager which takes you to a new page. Click on compose new message, type the recepient's name in the recepient's box, enter message title in the title box, write your message, click on send messsge at the bottom of the page and you're done!

Take care.
Amanda Thorpe
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#16 miocean

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Posted 11 July 2011 - 07:17 PM

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
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#17 jeanann

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Posted 11 July 2011 - 07:19 PM

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

#18 miocean

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Posted 11 July 2011 - 07:21 PM

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
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#19 georgie1111

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Posted 12 July 2011 - 12:39 AM

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

#20 jeanann

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Posted 12 July 2011 - 07:28 PM

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