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miocean

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About miocean

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I was an Elementary Art Specialist for 27 years before retiring on disability in 2005 due to diffuse scleroderma and renal failure. I was very active in my profession and enjoyed it, was named Teacher of the Year two times, am in Who's Who on American Teachers two times, Who's Who Among Executives and Professional Women, and was a Geraldine R. Dodge Visual Artist/Educator award winner. My students were recognized for their work, receiving the highest honors in Pentel's International Children's Art Exhibition and Crayola Dream-Makers. My own creative areas were painting and jewelry design.

I started feeling sick in February, 2004. I would awaken in the middle of the night with my hands tingling and in pain. I thought it was carpal tunnel syndrome. Then my hands and feet began swelling and my hands became very sensitive and my skin became hard. I had no energy. I tried to treat it homeopathically with no success. One day my school nurse told me she was very worried about me, that what ever was wrong could be something serious. I went to a neurologist who ruled out MS. I was typing in my symptoms on the internet and scleroderma kept on coming up. I was familiar with it because my mother-in-law had been diagnosed with it several years earlier. I read the ANA test was used to diagnose scleroderma and she was going to run blood work so I requested that test. It came back positive, speckled pattern. She referred me to a rheumatologist who, very crestfallenly, said I had sclero and referred me to a specialist in the field.

By September I was VERY ill, I even told my husband that I felt like I was dying. My rheumatologist called and said he did not like my recent blood work for kidney function and had my sclero specialist admit me to her hospital. The next morning I was brought down for a CT scan and couldn't even get on the table. I got back on the stretcher and felt my throat closing up. I said, "I can't breathe" and the techs said "you're talking so you are breathing" and I said," no, I am dying." The last thing I remember was hearing plastic being ripped open. I stopped breathing and my heart stopped. I was unconscious for three days, coming to intubated and in intensive care. My kidneys had failed and I was on dialysis. I was in intensive care a week and in the hospital another week. I was home a week when things went wrong and I was admitted to a local hospital where I spent most of October.

I was on hemodialysis for 5 1/2 years before having a transplant on March 11, 2010. I have Interstitial Lung Disease, GERD, GI problems, Raynauds, calcinosis and pulmonary hypertension. My skin score started out at 45 but over the years has gone down to 11. The transplant has made all the difference in the world and I am very grateful to my donor and his family.

I still deal with scleroderma and am encouraged by all of you on the forum who so bravely face the various issues associated with it. Thank you for being there for me, and I hope I can be there for you.

 

Update 2014:

I am happy to say my kidney transplant is doing well. My lungs, however, are not and I am currently applying for a lung transplant. The good news is my lungs aren't bad enough yet. The bad news is the damage to my GI tract is significant and my esophagus isn't working. This may eliminate me for a transplant. I am hoping I will never need one but always have "Plan B." My pulmonary hypertension is under control with medication and my skin score is now a 0. The calcinosis has increased to larger masses and more pain.

 

I am more active now than I have been in the past 10 years since diagnosis. Pulmonary rehabilitation showed me that exercise is the best thing for me. I have a portable oxygen concentrator and am traveling when I can. People keep telling me how good I look. I think that is one of the most frustrating things about this disease, that you can look so good on the outside and yet know your insides are all diseased. Oh well, I keep on smiling and dealing with things as they come up.

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