Badges (1)

About

Member has chosen to not make this information public.

Pages

Member not yet following any Pages.

Posts (11)

Tue, Jun 11 5:35am · Myocarditis in Heart & Blood Health

@helena4000, it was probably me that posted that I was able to get off the transplant list. I was listed in 2016 for about 9 months, but my heart improved with meds enough that they were able to take me off the list. Unfortunately, my heart function has significantly declined again, and I'm going back on the list. Not losing hope….there's still a chance it will improve again and the transplant won't be necessary yet. I think eventually it is inevitable, but I'm trying to postpone it as long as I can.

Tue, Jun 11 5:30am · Myocarditis in Heart & Blood Health

@kylehop, I am very fortunate to have Dr. Cooper as my cardiologist. He is the doctor that finally properly diagnosed my lymphocytic myocarditis. I am beyond blessed to see him on a regular basis, along with my transplant cardiologist. My husband and I had discussed going to the foundation event in NY this year, however if I am approved for transplant next week, traveling that far won't be an option. Thanks for the reminder, though. I'm going to look into it and find out if it's an option for me. THANKS!!

Mon, Jun 10 12:39pm · Myocarditis in Heart & Blood Health

Hi. I have been diagnosed with lymphocytic myocarditis (through a heart biopsy). Medication wise, I'm taking Tacralomis (prograf) for the myocarditis (1mg 2x day). My understanding is that the myocarditis has caused heart failure. I'm taking metoprolol, losartan, spironolactone, bumex for the heart failure. I'm currently being evaluated for heart transplant at Mayo Jacksonville. I'm searching for anyone else that has been diagnosed with lymphocytic myocarditis to communicate with. My understanding is that it's caused by an auto-immune disease (my immune system "attacks" my heart).

Thu, May 30 6:07am · Applying for Disability in MAC & Bronchiectasis

I finally got approved for disability….about 2.5 years after applying. I was denied twice, then hired a lawyer. A lawyer will get 25% of your back pay up to $6,000 maximum. So mine got it approved and she got $6,000 of my back pay. It was worth it to finally get it approved. File as soon as you can, because it does take a while. Document EVERYTHING. Keep a daily journal of your symptoms, how you feel, doctor appointments, etc. I had over 200 appointments at Mayo in 2017, documentation of everything, diagnosed with CHF, myocarditis, fibromyalgia, had 9 hospital stays in one year, and still got denied twice. I think they hope you just give up. Don't give up. It's very frustrating, but stick with it. When you do get approved, you get back pay. I got approved about a month ago, got my back pay, and got my first monthly check this week. Yea!! It doesn't replace the 6 figure income I was making, but it does help. I'm happy to answer any questions.

Mon, Mar 18 11:48am · Polymyalgia rheumatica in Autoimmune Diseases

I have symptoms return when I go below 10mg of prednisone. I drank wine just about every night when I was taking prednisone. A glass (or 2) helped me to relax. I also don't do well with pain pills. They made my stomach hurt or made me nauseas. I agree if you can get in with Mayo Jax, they are great. I have a fabulous rheymatologist and cardiologist there.

Sun, Feb 17 8:59am · Polymyalgia rheumatica in Autoimmune Diseases

Unfortunately, I had an allergic reaction to plaquenil when I tried it years ago. My feet and hands peeled terribly. My skin would just peel off. I hope it works for you, because I know how toxic prednisone can be.

Nov 5, 2018 · Lupus or not Lupus? in Autoimmune Diseases

I struggled with a diagnosis, too, until I was told (and it makes sense to me now) that it doesn't matter which auto-immune disease I have….all they can do is treat the symptoms. I was told Lupus, then Sjogren's, polymyalgia rheumatica, myocarditis, fibromyalgia…on and on. Putting a name to it doesn't change it. No matter which auto-immune you have, the solution is the same….treat the symptoms. My symptoms have varied from alopecia, joint pain, muscle pain, psoriasis, terrible rashes, heart attacks, on and on. Each time I get symptoms, I get treated for the symptoms (it is usually prednisone, but I've also tried things like Humira and Embrol). We're all different, and what works for one person doesn't work for the masses. Good luck on your journey!

Sep 29, 2018 · Polymyalgia rheumatica in Autoimmune Diseases

I have the same diagnosis along with heart issues. I have the same thing happen to me when I go below 10mg of prednisone. I drink wine every night, 1 or 2 glasses. The pain in my hips and neck is unbearable at times.