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Hasanati
05-26-2007, 11:04 AM
i knew as i typed my 'new topic' the other day that something was happening...at this point, i'm numb! i'm angry, i'm disappointed, i'm sad, i'm irritated, i'm just plain ole tired! i literally have no more fight in me for this health thing called lupus. didn't think things could get any worse...but leave it to my so called life to never disappoint me!

now they say...' significant hypertensive disease w/ possible left ventricular diastolic dysfunction'...in english...my blood pressure has been out of control for so long that it has started to affect my heart...possible heart failure. (and since i don't have a job, medical insurance, or money...how can i get treatment for this!) and really...do i even want treatment...i'm sick and tired of being sick and tired...

life is truly for the birds! (i knew something had been going on w/ my body...because i know my body and i know when something isn't right. but some of these doctors can make u feel like your the crazy one and like you really aren't as sick as u say...well, i have the medical records to prove it!)

are u kidding me???? i'm only 33!

:cry: :roll: :x :mad: :shock: :? :( :crazyeyes: :oops: :bad-words:

angela
05-26-2007, 12:43 PM
check your email....

Saysusie
05-26-2007, 12:54 PM
Have your doctors mentioned anything to you about Antiphospholipid Syndrome (clotting disease)? Lupus patients have a tendency to have ventricular high concentrations of anticardiolipin antibodies which causes antiphospholipid syndrome. Cardiac problems in people with primary antiphospholipid syndrome (PAPS) has been well documented. Diastolic dysfunction in PAPS has been seen often. Patients with active Lupus tend to have significant diastolic dysfunction. Even with this, you are not along. However, treatment usually includes treatment of the underlying disease (your Lupus).
This may not be your case, but it might be worth it to ask you doctor about it!


Peace and Blessings
Saysusie

chichibug
05-27-2007, 02:48 PM
Hasanati,
I went through a flare that did the exact same thing to me. My heart muscle failed, my ejection fraction was in the dirt... I was passing out just by sitting up. They took my license. I was SO depressed. It went on for about 4 months before it began to pass. It was the worse 4 months of my life.
So, yeah, I do understand :)
I was put on the transplant list, only to be removed due to the lupus. My cardiologist was so outwardly SAD. I had to cheer HIM up haha. But I learned during those 4 months what "rest" really was. I learned how to let go-and let God. It was the worse 4 months, but also I'd not trade those 4 months for the world. Now when I feel really badly, I just remember how it "could" be and I get "over it."

It took rotating various meds, and lots of trial and error before things started to get under control. It took about 4 months more to get my strength back (well, it's really never been totally back, but you know what I mean).

I hope you find healing from this--and soon. I'm not sure where you are located, but if you're in So California, you might want to try UCLA Medical Center. They have a department just for rare diseases... I am considering calling them myself, to get another member on my "team"...

--Kristin

kkelly
05-28-2007, 03:38 PM
Hasanati,
Try to get treatment. I am so sorry you are going through this. I had a mitral valve failure last year due to chronic inflammation of the valve. I went through a successful valve repair (and open heart surgery). It was very hard and traumatic but I am much better today for it....Oh I know, just when you think things can't get worse, they manage to....Hang in there, things will get better.

IloveHistory
05-30-2007, 02:39 PM
Hi Hasanati!

I am SO sorry to hear that you are going through such a difficult time, but please know that you are in my thoughts and prayers!

Feel better soon!