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Scleroderma Renal Crisis (SRC)


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#1 georgieoz

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Posted 22 August 2009 - 10:12 PM

G'day everyone, my name is georgieoz , and I just joined your group and I wanted to share my experience with you in the hope that there are others here in the same place I am at. I have had diffuse sclero for about 3 years. I had all the typical symptoms but earlier this year I suddenly started to vomit continuously and had bad headaches and off all food, after day 4 I went to hospital my blood pressure was 155/110 (later correction, actually 255/110) still vomiting. I was in scleroderma hypertensive renal crisis, and sadly months later I now do dialysis because I have next to no kidney function left. I do dialysis 4 times a day 7 days a week. Because so little is known about scleroderma by our medical people I was just treated for high blood pressure -- it took weeks for them to work out I was in scleroderma renal crisis (SRC) but by then it was too late; my kidneys were gone ... is there anyone else here on dialysis due to SRC?

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#2 jefa

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Posted 22 August 2009 - 11:03 PM

Hello, Georgioz and welcome to the ISN Sclero Forums. I am sorry to hear that your medical teams did not spot the renal systems sooner. I am glad that you found us and hope you will find it to be a refuge of information and support.

It is important for all of us to be aware of the signposts for these issues and keep an eye on them with our medical teams. Regular blood pressure checks are important.

Here is our page on Scleroderma Renal (Kidney) Involvement. There are a number of patient and caregiver stories at the end of the page.
Warm wishes,
Jefa

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#3 Amanda Thorpe

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Posted 23 August 2009 - 03:46 AM

Hello Georgioz

I am so sorry you have ended up with damaged kidneys but thank you for sharing your experience. Because I have frequent migraines and high blood pressure (now being treated) I have regular blood tests and so far my kidneys are okay. My creatinine levels are always low but believe me the minute they go high or I start vomiting like you did I will be screaming renal crisis to anyone and everyone.

I'm so glad you have decided to share what must be a very difficult experience so that others on this forum can benefit from it and I do hope we can also support you also. Thank you for your post and I look forward to reading many more.

Take care.
Amanda Thorpe
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#4 georgieoz

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Posted 24 August 2009 - 01:44 AM

Thank you ladies for your replies. I have to amend what I wrote though, my blood pressure was 255/110 not 155/110. I think the important message here is to be alert to different symptoms. I thought I had a virus; I didn't know about renal failure. I thought the vomiting would just run its course and all would be well again and furthermore the doctors had no clue either, they just treated me for high blood pressure. It was only because the blood pressure (bp) would not respond to medications that they decided to look into scleroderma ,but it was too late by the time my bp was controlled I lost my kidneys. My concern these days is my doctor told me that since I had scleroderma renal crisis (src), I am at high risk for pulmonary crisis (can't remember its right name ) so this scleroderma is pretty scary, ya just never know.

Hugs,

goorgieoz

#5 miocean

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Posted 24 August 2009 - 06:17 AM

I have experienced renal failure, too. I was just diagnosed with sclero five years ago when I became very sick, vomiting, weakness, foamy urine and high blood pressure. I thought too it was just a virus. I had some blood work done and the dr. wasn't happy with my kidney levels so I was admitted to the hospital. The next morning they brought me down for a CAT scan and I stopped breathing and my heart stopped. When I came to in intensive care I was intubated and my kidneys had failed. I started hemo dialysis then and have been going three times a week for five years. I am on the machine for 3 1/2 hrs. at a time.

I am on three lists for cadaver kidneys. I had several friends and family members offer me kidneys but for one reason or another they didn't work out. The wait for a cadaver kidney is between 4-5 years. I am coming to the final months, should be called within the next year. I would suggest getting on a list or two. You can register once in a state but can register in as many states as you want. You have to go through a lot of testing yearly to stay qualified.

If I can help you with any questions let me know. It is such a bummer to be on dialysis, I really sympathize with you. Good luck and stay as healthy as you can.

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#6 Jeannie McClelland

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Posted 24 August 2009 - 07:18 AM

G'day Georgie,

I'd like to welcome you to the Forum too although I'm really sorry you came to tell us of such a life-threatening experience.

What a dreadful experience to go through and with such awful result, I hope you are on a transplant list~

Hearing your story is so much more vivid and cautionary than reading endless scientific abstracts on scleroderma renal crisis. Thanks a million for sending it. I, for one, will pay much better attention than I have been doing to any sign of a kidney problem.

You mentioned pulmonary crisis - was that maybe pulmonary hypertension? If it was, we have a lot of information about it and a number of us (me for one) who have that. Did your doctor offer any screening or advice on what to watch out for? What my rheumatologist does is screen all his scleroderma patients for it and pulmonary fibrosis at the beginning of starting care with him and then periodically there after. For me, the hallmark was increasing breathlessness, especially with exercise.

Georgie, I hope you'll post as often as you feel up to it and let us know how you are getting on. We often tease each other about all the hugs we pass around on this Forum. Please know I'm sending you a big one. I hope everything works out well for you.

Warmest wishes,
Jeannie McClelland
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#7 Amanda Thorpe

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Posted 24 August 2009 - 07:47 AM

Hello Miocean

I had no idea you had been through such a rough time as well...yet here you are posting to encourage and help others. The people on this forum just blow me away.

Take care.
Amanda Thorpe
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#8 georgieoz

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Posted 24 August 2009 - 11:49 AM

hi again , miocean I do peritoneal dialysis , I do it from home 4 times a day 7 days a week , because my hands are so severely effected by scleroderma the specialists would not even attempt a fistula in my arms for hemo dialysis ,said it would put me at high risk for ulcers and gangrene , so if peritoneal dialisis fails I am in real trouble .... but as it is today the pd is working well , I have no real trouble with it but the sclero is still on the march and causing me daily hassles , I am not on a transplant list as it was suggested that I probably wouldnt be accepted as the scleroderma would just take it in the end anyways so I wouldn't qualify !!!!! perhaps I should re approach the subject next time I see the specialist ............ yeh that's the word I was looking for pulmonary hypertension !!! thats what they say I am at high risk in getting , they say the symptoms to watch for is a persistent dry cough and fatigue ...... they said not to worry about it just to get on with life as it may not happen , I am not receiving any treatment at all for scleroderma , the doctors says nothing they can do just 'wait and see' and they will treat the symptoms as they arise " so that is where I am at ................ hugs georgieoz

#9 Jeannie McClelland

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Posted 24 August 2009 - 05:27 PM

Hi Georgieoz,

You sound like an absolutely amazing person and a lot braver than I'd be. We're all going to be keeping our fingers crossed that the peritoneal dialysis continues to work well for you.

Pulmonary Hypertension info is here, if you want to read up on it sometime. (I find that when I take the time to research something, I never need the knowledge. Maybe it'll work that way for you too!) One of the frustrating things for doctors is that every single case of scleroderma is unique and unpredictable. I think in recent years since researchers are more able to look at data from studies in many research centers and do retrospective chart analysis some of the statistic might be a bit more reliable, but they can't say this patient will develop this complication within this time span - and I'm real happy about that, myself. At any rate, pulmonary hypertension is treatable and there are some great new medications on the market and in the pipeline. I'm on an oral medication that has come out fairly recently and am doing great on it.

I don't know if your doctor isn't offering treatment aimed at slowing/stopping the scleroderma because of your kidney problems (I'm no doctor, I even have trouble spelling rheumatologist), but I think I'd want a second opinion before accepting that nothing can be done. I know it has got to be really difficult for you to travel, but there are some specialists who are members of the Scleroderma Clinical Trials Consortium in AS. There is a list here. I think most of us here on the Forum feel pretty strongly that a rheumatologist who specializes in scleroderma rather than a general rheumatologist is the way to go. I'm real lucky because the doctor I see specializes in scleroderma/autoimmune lung disease and I think one of the reasons I am doing so well is because he knows what and when to treat.

Are you going to ask about perhaps getting on a transplant list? I've got a friend who had a kidney transplant because of polycystic kidney disease and she's on more immuno-suppressants than I am (to prevent rejection). They're a common medication used in treating autoimmune diseases, including scleroderma. Here in the USA, scleroderma isn't a cause for immediate rejection for kidney or lung transplantation. It might be worth your while revisiting that issue, as you suggest. Nothing ventured and all that.

Besides being a huggy bunch, we can also be a pushy bunch! We want nothing but the best for all our Forum friends.

Warm hugs,
Jeannie McClelland
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#10 miocean

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Posted 25 August 2009 - 03:09 AM

Georgieoz,

I too am not a candidate for a graft or fistula due to my vascular system. I have a catheter. It works pretty good, I have to replace it every once in a while but the one I have now has been in over two years and is still working so that is good. My scleroderma specialist says that sclero patients are good candidates for transplants and the it rarely affects a second kidney. You should check into this again.

I don't know if you are in the states or not. I am in NJ and see Dr. Hsu at Robert Wood Johnson in New Brunswick.

Best wishes,
miocean
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#11 georgieoz

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Posted 25 August 2009 - 03:28 AM

jeanie , I think the main reason for no medications is that I am severly alergic to cortizone , everything they tried I reacted to , so ....... the rhumotoligists I see are specialised in scleroderma , they have said that my sclero is aggressive , when my bp was so high they tried everything to get it down , I was on 12 pills a day and yet my bp was still high in the end the specialests said they were running out of options but they had one more pill they could try and bingo that was the magic bullet my bp came down but not before my kidneys died ( I got 2% kidney function) .......... I just resigned myself to what will be will be meanwhile I am back to enjoying life , spring is just weeks away can't wait for that had enough of winter cold .lol in closing can I ask if anyone has any remedies for SEVERE itchy skin , it is driving me nuts can't sleep from the urgency of the itch !!!!!! hugs georgieoz

#12 georgieoz

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Posted 25 August 2009 - 03:32 AM

miocean , when you had yiur renal crisis did you loose your taste ? I am 3 months into dialisis and still have not got my taste back , the doctors say it could still return so I am hopeful , how long before your taste came back ........... can't wait to have the simple pleasure of eating come back ....... hugs georgieoz

#13 miocean

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Posted 27 August 2009 - 07:45 AM

I did not lose my sense of taste so I cannot give you any advice on that. I am incredibly thirsty all the time and am supposed to limit my fluids to 32 oz. per day. I am almost always over.

One encouraging thing...with sclero renal crises the kidneys can come back. My dr. knows
someone whose kidneys came back after 3 years! Unfortunately that wasn't the case with me and mine are all shriveled up now. I wish you better luck.

miocean
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