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Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 7/4/2012 8:48 AM (GMT -6)   
Hi to my lupus family,

As I said in my other post, I've been away for awhile. I am really struggling so much has happened not only in the last year, but just in the past few weeks.

I have obstructive sleep apena and have been using a CPAP machine since 2006. Last summer I was told (after another sleep study) I have central sleep apena as well. I had to switch to a VPAP machine and can not sleep without it. I could die w/o my machine. May 23rd my hubby found me unresponsive, like last year, and he had to call 911. Apparently I pulled something off my machine and I wasn't getting my pressures to keep me alive.

My cardiologist isn't sure it's my sleep apena that's causing me to stop breathing and develope carbon dioxide in my blood, and makes me be unresponsive. So a week ago I had a right sided heart cath, and they also implanted a cardiac heart monitor in my left chest. It records the activity of my heart 24/7. I am still on oxygen 24/7 and I am doing pulmonary rehab 3 times a week.

On top of my severe joint pain and low back pain, I have a problem with warts on my hands. It's serious enough that both my thumbs are deformed. We have tried everything on them. The Dermatologist says it's because I am so immuno suppressed. I asked them to check my B cells and T4 cells. I wanted to do Rituxan again. Well I have NO B cells and my T4 cells are 5. The Dr's usually put patients with T4 cells less than 200 on antibiotics to prevent opportunistic infections from happening. They (Dr's) are stumped, I will be going to see an infectious disease Dr at NIH.

I've had so many units of blood I can't help wonder if I gotten AIDS from one of them. I know I've been tested, and they are negative, but normally patients with low T4 cells are AIDS patients. I have to say I am really discouraged I am feeling so crummy and I am sick of taking 20 pills a day. Thanks for reading this post and allowing me to vent. To the new members I want to say welcome and this is a great forum.

Hugs,
Barbar

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/4/2012 12:28 PM (GMT -6)   
I've got OSA too! What is your pressure? Mine was just upped to 15.

I hope you can get your other issues straighten out.
Joy

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7725
   Posted 7/6/2012 11:30 AM (GMT -6)   
Actually, I've seen 3-4 people here with low T-cell counts that aren't HIV+, but they have blood disorders/diseases (like your MDS). It really sucks that you have conflicting illnesses -- makes it impossible to find a good consistent treatment. I think that's why your drs get so confused -- they think about one side of the equation (lupus = overactive immune system) and forget about the other half (mds = underactive immune system) -- and the other things like slow healing, opportunistic infections (warts), and breathing/heart difficulties just further confuse things!

Maybe one of the AIDS specialists who focuses on some of the opportunistic infections can help some...if you can only get to those drs. I am so sorry about the thumbs -- it sounds like that is really getting on your nerves. It sure would be upsetting me.

How long will you have the cardic heart monitor? Any clues yet on what it's finding?
Hope to talk to you soon,
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde
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