Tag Archive | blood clotting disorders and osteonecrosis

Lupus affects my blood, too?

What, lupus affects my blood? “Stop the world, I want to get off!” Yes, lupus greatly increases your chances of having Antiphospholipid Syndrome.

Anti-what? Normally proteins in the blood bind to components of the cell wall (phospholipids). In lupus, the immune system mistakenly attacks these phosophlipids, destroying them and resulting in damage to the cell wall. Doctors call this ‘Antiphospholipid Syndrome (APS)’ or ‘against phospholipids. When this happens to the arteries and veins, blood clots can form, sometimes deep vein thrombosis (DVT).

When these blood clots travel, they can create other complications, including stroke, heart attacks, osteonecrosis and kidney problems. These will be discussed individually in other posts.

Not all lupus patients have APS, but it occurs in a significant number. APS can also affect the ‘general population’ and can affect their blood clotting, especially pregnant women.

Treatment of this disorder consists often consist of medications to prevent excess clotting, such as Coumadin (warfarin), Heparin or Lovenox and is often a lifelong commitment.

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Osteonecrosis, Lupus and Surgery

There’s a reason that I’ve not posted for a few weeks: Last night, I returned from a 1000-mile pilgrimage to Chicago; ‘what a wonderful vacation spot,’ you might think! Au contraire; this was what one might call a working vacation for the osteonecrosis in my ankle joints.

Osteonecrosis on a lupus blog? What’s the connection? First, I think a brief explanation of osteonecrosis is due: Osteo (bone), necrosis (death): dead bone. The death of bone structure causes bones to lose their ability to support the body, they collapse becoming incredibly painful. There are various stages of osteonecrosis, often determined by the degree of collapse of the joint.

There are many causes of osteonecrosis; basically anything that cuts off the blood supply to a bone, so that the bone dies from lack of oxygen and nutrients can cause osteonecrosis. Often, steroid medications are the culprit, or blood clots can form due to a disease (like lupus) or because of different blood clotting disorders. One might have nitrogen clots from diving, but lupus causes clot formation, also.

The doctors aren’t sure of the cause of my osteonecrosis; Is it the intravenous steroids I was given in large doses for lupus, or blood clotting disorders that I have, or a blood clotting disorder often found in lupus patients (Antiphospholipid syndrome) or fatty clots formed because of my higher than normal cholesterol. or any number of other reasons?

Whatever the cause, I needed to address the fact that I have osteonecrosis in my ankles and what treatment, if any, could help. That was the reason for my ‘trip.’ While in Chicago, I saw an ‘uber-specialist’ (that’s what I call this fellow) about the osteonecrosis in my ankles, which until now, has escaped the many treatments my pretty smart doc has thrown at it. My local doc and I’ve done everything by the book (and then some!) and still, walking is incredibly painful, difficult and the weight I’ve gained because of the painful walking only puts more pressure on already compromised ankles. ONE VICIOUS CYCLE 🙁 

I was referred to the surgeon in Chicago by another foot/ankle specialist. The surgeon I drove 1000 miles to see said that he’d be able to with a Total Ankle Replacement. Both ankles are bad, but the left is BADDER than the right ankle.

LO AND BEHOLD, though I’ve got a lot of hoops to jump through before next January (his earliest opening for surgery), ‘God willing and the creek don’t rise.’ I’ll have a new ankle in January followed by 6 weeks of COMPLETE non-weight bearing. Then, we’ll talk about replacing the other ankle! So, all in all, a VERY productive trip. 

While in Chicago, which was my home for 26 years, I arranged a meeting with another blogger who’s helped me out before. “It’s a small world, after all, it’s a small world after all…” That ditty comes to mind when thinking of my meeting, lunch and wonderful afternoon with Lois Roelofs!

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