Hi, I'm 23 and I'm currently in Royal Free's kidney unit after a check up 4 weeks ago. Turns out i had a chest infection that turned into pneumonia and my kidneys Had began to pack up. By some unlucky twist I was only 5 days away from the year anniversary of my Scleroderma renal crisis.
On 2nd March 2017, I started vomitting a lot before complaining I'd gone blind. My parents drove me down to A&E where I was taken for a CT scan (they thought there was something wrong with my brain causing the blindness). Second I got into the CT scanner I had a cardiac arrest and was dead for 8 minutes.
Since then I've had to learn how to walk again, learn how to swallow, I had a catheter inserted so I could dialyse at home after my kidneys failed and I've had more heart and lung tests than I can count.
I'd hoped to be done with the long hospital stays by now but they seem to be never-ending. I just wondered if any of you guys have much experience with kidney involvement and how your quality of life is
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Redoralive
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Hi, sending you lots of hugs, you will never be on your own on this site x
I only have mild renal involvement to date and I’m 55. So your predicament at such a young age puts thinks in perspective. I hope things improve greatly for you once you get beyond this latest setback x
All the best.I 've had scleroderma in a mild form since nov. 2011. Thus far have only experienced a few digital ulcers each year since the winter of 2015 and some mild esophagus reflux for the first time this year.Keep well and keep in touch with this forum.
Hi sorry to hear that you are going through so much. I lost my left kidney but the right kidney is fine so far I been in a lot of pain it has affected my face hands and feet skin esophagus stomach and lungs. My heart so far haven’t been affected yet but it have attack my lower spin as well I woke up one morning and my legs were hurting me so bad I could barely move them I was in the hospital taking all kinds of tests and it turned out my lower spin was deteriorating. I didn’t think reynauds and scleroderma affected the bones just blood cell skin and organs
I too was in intensive care of hospital last March. This is my one year anniversary, also. Elevated blood pressurem from stress on my job put me in a renal crisis and my blood vessels are excruciatingly painful now to secure labs. I have found staying sufficiently hydrated with water helps and a friend suggests once in a while I try a hot cup of Pappy's liquid Sassafras Tea concentrate. (Not herbal sassafras)! This has lowered my creatinine levels and instantly relieves any discomfort in my lower back area. Check with your doctor before trying. However, I am very leary of the dye contrasts used in scans for our condition and don't know how to convey this concern medically to our care providers. Your mention of your experience furthers my fears even more. I truly believe this will be a phase of this condition that you will move through and overcome. Keep up with your medical care and continue to get better. May all miracles come your well.
I wanna remind everyone that people that have Scleroderma experience it in a completely different way. We are all unique, while some of us may have similar issues there are none of us exactly alike. There are others with totally different symptoms all together. People with autoimmune diseases get autoimmune disorders. I have Fibromyalgia and Raynauds just to name a couple of them. I unfortunately, have been suffering my whole life with all types of involvement as I have Systemic Sclerosis type so I have quite a bit of internal involvement. I hope that I was able to help at least one other person by my post. This is my second post ever and that includes all the other web sites as well.
Very true. Although, we all experience this condition differently, I have learned so much about my condition from others in these forums. I truly thank you for your response as I value our expressions in these forums. Sending all the best each day can offer.
I HAVE SYSTEMIC SCLERODERMA I HAVE BEEN DIAGNOSED ABOUT 10Years all symtoms were not to bad but as I get older it seems to be getting worse feel very tired some days I had a job to except this illness but ok now I found this site and I feel so pleased as it does help .Keep well as you can.
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