Seriously? Slapped by yet another label???

Hello All
I hope you guys had as pain-free a weekend as possible. I've been struggling extra this week with pain, fatigue, and breathing issues. I just need to make it thru the next few days...I think I can, I think I can...

Saw my hematologist on Wed and got slapped with yet another diagnosis: Antiphospholipid Antibody Syndrome.
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WHAT IS APS?
APS is an autoimmune disease which can cause frequent clotting in arteries and veins and/or miscarriages. The clotting results from the presence of proteins in the blood called anti-phospholipid autoantibodies (commonly called aPL) formed against the person’s own tissues. These autoantibodies interfere with coagulation, leading to increased clot formation or thrombosis (in which blood flow stops due to a clot).

The damage caused by this clotting can vary depending on the site of the clot. For instance, repeated small clots in the heart can cause heart valve thickening or damage, with the risk of releasing clots into blood (called an arterial embolism). aPL also may be associated with heart attacks in young people without any known cardiac risk factors. Blood clots in the arteries in the heart can lead to heart attacks, while blood clots in the arteries in the brain can result in strokes. Blood clots from aPL can occur anywhere in the circulation and can affect any organ in the body.

Clots forming in the veins most frequently occur in the lower legs. Blood clots in the leg veins can break off and travel to the lung, causing a very serious condition called pulmonary embolism. Pulmonary embolism blocks blood flow to the lung and decreases the amount of oxygen in the blood.

In a few cases, repeated thrombotic events may take place in a short time, leading to the progressive damage of several organs. This acute and life-threatening condition is called catastrophic APS.

Patients with APS may suffer from other problems including low number of platelets, mottled purplish discoloration of the skin (livedo reticularis), and skin ulcerations.
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Not a big deal compared to some of my other lovely labels, but I'm so tired or adding junk to my resume.
This does explain the multiple PEs I had over Christmas last year. I already take Xeralto, but I guess we will be life long friends.

FINALLY heard from my team at Duke and they got the IVIG plus another IV med approved. I was supposed to go down and get it this week, but the team wants me to have a right heart cath first. I feel like strangling somebody-I've only been waiting for months for some sort of systemic relief. ARRGGHH! Of course I can't scream in real life because my jaw can't open enough-ugh.

So-heart cath next Mon. Team is concerned about pulmonary hypertension since when I walk my pulse goes up to the 150s and O2 down into the 80s. The infusions will be a lot of fluid, so a healthyish heart would be preferable. It's already screwed up-but hopefully these new meds will help a bit.

Saw my pain dr after the hematology appointment. I know it's not nearly as scary a diagnosis as some of my others, but it's just yet another... I just broke down and cried. Love him-he brought back tissues, pulled up a chair, and just let me get it all out. He told me that there IS a miracle drug out there, and I have the strength and attitude of a person who will find it. I then told him he's been saying that for close to 9yrs now, and he got teary-eyed as well. Things just will NOT get better.

My body really hates itself in every way. It attacks my joints, organs, and now my blood. I don't know anybody who hates me as much as myself hates me...I'm a pretty likable person.

Oh well-One thing I'm always grateful for is my med team. After our cry session, my Dr and I talked pain meds, switched up what we needed to, and hopefully I'll be in as little pain as possible. He also did a few trigger point injections in my back. After the heart cath I'll come back and get a series of cortisone injections down my sternum to help with inflammation. I'll always have pain, but I know I'm in as little pain as possible.

OK-just had to vent a bit. I know I'll just tack this new diagnosis onto the end of my current novel, but eventually it's going to become an epilogue because a body can only handle so much.