MCTD Support Group
Mixed connective tissue disease (MCTD) or Sharp's syndrome is a human autoimmune disease in which the immune system attacks the body. MCTD combines features of polymyositis, systemic lupus erythematosus, and systemic scleroderma and is thus considered an overlap syndrome. MCTD commonly causes joint pain/swelling, Raynaud phenomenon, muscle inflammation, and scarring of...
To hopefully make this short. After feeling bad for a few weeks We " (Me, My Wife and kids) " found out why.
On 3/07/13 I told the wife CALL 911
Double Sided Heart attack, bilateral, dia to and around the back. And pneumonia in both lungs. So which came first the chicken or the egg?
lungs, heart? there connected and one works very poorly without the other.
Did it start with fluids around the heart and lungs ?
We don't know yet and may never know. My lungs and heart had a green light over a year ago but it seems there isn't always a yellow.
I spent alot of time either thinking I was dead, watching a motionless clock. Or wishing I knew what was happening.
I am out of the hospital as 3/18/13
The only thing we are sure of it was large and we had no hints it was coming. Fluid on heart and lung started it all. I would add this to Heart Attack group and pneumonia, But everything had been checked out, Somehow My fluid habits changed
My Clot time changed
P.S. 80mg Pred was the first response of my rhumy , So we can guess what he thought.
But I Hope we're all still here
Hope we talk soon
On 3/07/13 I told the wife CALL 911
Double Sided Heart attack, bilateral, dia to and around the back. And pneumonia in both lungs. So which came first the chicken or the egg?
lungs, heart? there connected and one works very poorly without the other.
Did it start with fluids around the heart and lungs ?
We don't know yet and may never know. My lungs and heart had a green light over a year ago but it seems there isn't always a yellow.
I spent alot of time either thinking I was dead, watching a motionless clock. Or wishing I knew what was happening.
I am out of the hospital as 3/18/13
The only thing we are sure of it was large and we had no hints it was coming. Fluid on heart and lung started it all. I would add this to Heart Attack group and pneumonia, But everything had been checked out, Somehow My fluid habits changed
My Clot time changed
P.S. 80mg Pred was the first response of my rhumy , So we can guess what he thought.
But I Hope we're all still here
Hope we talk soon
And, you do write very touching poetry. You should see about getting some of it published!
Mary Ann
Take care.
AnnMarie
Take care and keep us posted!
-Kate
Love peace and joy to you.
Beth
I had fluid around my heart and lungs, pneumonia, I had not been feeling well but had and was dropping weight finally. At the time I had lost around 50 lbs as per my rhumys records. Now they want me to control my weight within 3 to 5 pounds no matter on steroids or not. As it is a sign of CHF. I am so confused as to how they expect me to do that when I dropped 50 when it happened. Basically there will be no signs in my opinion but you cant tell them this. I have to schedule every Doctor I have except my Heart who I have already seen, All he asked was "are you feeling better now, after this has been removed?" my answer was no, i feel the same. I have never been an optimist and it seems I have chosen correctly being a realist.
But I did want to take this opportunity to say something to you all, from the "Rashers" all the way to the "Organ Effected, i.e. Lungs Vessels, blood, liver, heart."
Go to your Doctors, All of them, be aware of how you feel and don't just use common sense and google to talk yourself out of getting checked. It may save your life.
p.s. Im not the OMEN and I don't want to cause fear. But this can be a mean d# as well as a simple one. Don't take chance, Check everything.
Robert
I am a cardiac nurse and I can tell you that the 50 pounds you dropped so suddenly was water. Fat doesn't drop so suddenly. If you are gradually losing weight now, it will probably be fat. If you are yo- yo ing pounds a day, it is probably fluid. With 3 pounds of fluid gain, most people feel short of breath or more short of breath than usual. Fluid gain happens quickly in those on steroids. It is very important that you control your sodium intake. If you eat pizza, your scales will show it the next morning. I have seen people gain 8 pounds of fluid overnight eating pizza or a salty meal. You do not gain fat that fast. But, I also see people gain a half a pound each day for 2 weeks and it is all fluid.
My mother had a heart problem and I had to take her to the Dr one night because she could not breath and her legs were splitting from all the fluid. She lost 18 pounds overnight with water pills. So, I know where you are coming from.
I have been on a low sodium diet due to a weak heart which has healed for now. It is not easy. But, if I ate salt, I felt terrible. With my heart being better, I can eat some now. But still, at times I gain 3-5 pounds. I eat better, and pee it off and swear I will never do it again, until the next time.
I am on steroids all the time, low dose. It makes you hungrier. I have gained a lot of weight and am on Weight Watchers now. I lost 20 pounds initially, over 6 months. I promptly regained 8 when I got sick last year and am trying to get that back off plus the 40 more I need to lose. At this point, I am holding steady. A nice change from gaining!
All I can say is, you gotta try. Any success is better than the hell you are in. Just try.
Oh, write more poetry. You are good. Maybe a new career?
Mary Ann
Do the doctors think this was related somehow to Mctd?
Bb
They may not know for sure, but MCTD does cause an elevated risk for pneumonia for sure. Every time I get a cough, my doctors totally freak out, give me a chest x-ray, and monitor it very closely.
--Cat
Robert
PS If you look back before the 7th I was very deperesed and in alot of pain. I did make doctors appointments, they were just to late. Listen toy your body, you know it best