Greetings from a new member
Posted 19 May 2010 - 05:03 AM
I'm Caroline and I'd like to introduce myself. I'm 31 and have had diffuse Sclero since 2003. I lived with it with very few problems until 2007, when I was diagnosed with Pulmonary Hypertension. PH has been quite a journey. I'm currently on three PH meds and am taking the granddaddy of them all, Flolan. Even though I dislike the maintenance, I can breathe again!
As a full time high school teacher, I try to stay out of the hospital as much as I can. I hate missing school. However, this year I spent most of the first semester (43 days to be exact) in the hospital with kidney failure. As a result, I was sent home on peritoneal dialysis, a nightly treatment to make up for my failed kidneys.
Just when I thought things were getting better, I went to the hospital again with a fever and suffered from a mild stroke. Needless to say, I've taken off most of this school year. I'm very excited to put this year behind me and start a fresh year with my kiddos again! They certainly keep me going.
As a person with too many chronic illnesses (Sclero, PH, CKF), I try to live life to the fullest! I am close to my family and friends. For the first time, after my stroke, I also started an antidepressant which has helped so much. For the most part, I can handle the physical hardships. I know what it's like to weigh 98 lbs (at 5'8"); I know what it's like to not leave a hospital bed for weeks. However, the mental and emotional hardship with this year took its toll, and the new medicine has truly helped.
I look forward to reading new posts on here and feel silly for taking so long to participate! Thanks for reading my story and nice to "meet" you!
Posted 19 May 2010 - 08:47 AM
Welcome to the Forum - I didn't welcome you before, did I? The brain is mushier than a bowl of oatmeal today!
I'm sorry you've hit the unlucky jackpot with kidney involvement and pulmonary hypertension. Have you been reading Miocean's posts? She was on peritoneal dialysis for quite a long time and recently had a kidney transplant. She was also recently diagnosed with pulmonary hypertension. She's been an inspiration to all of us and gives a great deal of support to others. I think you'd like her.
I hope you have a great summer and get to spend all of next year with your kiddos!
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
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International Scleroderma Network
Posted 19 May 2010 - 09:04 AM
I saw your post on my two month anniversary of my kidney transplant. I am so sorry you are suffering renal failure. I was on hemodialysis for five and a half years. I waited a year before I was put on a transplant list because I was CERTAIN my kidneys were going to come back which they can with scleroderma. I had quite a few family and friends offer to be living donors but none of them worked out. I believe there is another person on the board with kidney failure who also does peritoneal dialysis, I hope she sees this and chimes in. In January I was diagnosed with PH. I have interstitial lung disease, GERD, calcinosis, Raynaud's, and GI problems. The wonders of scleroderma, I'm glad you found this forum, real people who actually know what it is like to have the disease.
If I can figure out how to do a private message I will try to contact you.
Posted 19 May 2010 - 10:19 AM
Welcome to the forum, I've recently been told I have serious heart problems and am awaiting the specifics including whether I have PH. Ain't sclero generous?
This forum is a wonderful place to be so keep posting and take care.
ISN Sclero Forums Senior Support Specialist
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International Scleroderma Network (ISN)
Posted 19 May 2010 - 04:23 PM
Amanda - although I'm no expert, I do know quite a bit about PH. I've tried several drugs including a clinical trial. I have one of the BEST PH specialists in the nation, if not the world. If I can help with any questions, I'd be happy to. I'm hoping your heart concerns are not PH related though. It's no fun!
Thanks for the welcome, folks! I appreciate the positive attitudes and warm greetings!
Posted 20 May 2010 - 04:18 AM
Welcome to our family. Sounds like you've been around the block a few times, and yet have such a positive outlook -kudos to you! Really sorry to hear about your stroke, but glad you are recovery well.
Look forward to knowing you better!