Welcome to my month

 grrrrr, Medical, Uncategorized, updates  No Responses »
Jun 302010
 

Now that it’s basically over, welcome to my month! Only a few people knew it was my month and I should have been telling people about it, but I got busy and I didn’t really know how to word it. This is my month because it is APS Awareness Month.

APS is Antiphospholipid Antibody Syndrome but you can refer to it as antiphospho-what? It’s also known as Antiphospholipid Syndrome, Hughes Syndrome, and Sticky Blood in the UK which makes it sound like something you’re likely to find in a horror movie. So what is it? It’s not Lupus! It’s a rare disease where your body makes antibodies that attack the phospholipids in your body. So the phospholipids in your blood cells get hit and the blood cells no longer have a nice smooth surface that can slip past one another. The blood cells catch on to one another, eventually forming a clot and once you get to the clots you face all the risks associated with clots.

As you might have guess by now, it is the cause for my two blood clots and as a result I am set to be on blood thinners until a way to fix it is figured out. There is no known way to fix the problem, and they don’t know what causes the problem. About all it seems that is known (at least to the end user) is that it isn’t a genetic condition which means I didn’t get it from my parents and I haven’t passed it on to Olive. If you look at every other blood metric my blood is fantastic, it’s just under attack. I don’t know whether I have primary or secondary APS. Primary means it’s all I have and secondary means I have something like Lupus as the primary. I wasn’t tested for that because I would have to go off blood thinners to test for that and it wouldn’t change my treatment of being on blood thinners. The doctor didn’t seem to think I have Lupus though so I’m going with primary.

So there you go, now all of you reading are aware of APS and I’ve done my part… very late. If you like you can ask me questions or find more information at the APS Foundation site.

 Posted by Douglas at 3:10 pm  Tagged with:

The continuing adventures of ugly leg

 bummer, Medical  No Responses »
Jul 012009
 

In the good news, I’ve have the time between my allergy shots extended to 4 weeks. I’ve felt ready for it for a couple of months. Now I’m pretty much on the home stretch of allergy shots. Also the doctor reviewed my previous blood test and found that I don’t have to have any more blood tests done to determine whether I’m genetically predisposed to clotting. Those were all done initially and I am definitely not a born clotter.

In clot news, I saw my doctor this morning to decide what’s next for the ugly leg.  Considering my leg is pretty much the same as it was after 3 months the clot is still there and she says it’s likely to remain there. So the choice is whether to continue on the Warfarin and start developing a risk for major internal organ bleeding over time, or to stop taking it and see if the clot gets worse again. I decided it to put off that decision in favor of talking to a vascular surgeon to see what they think can be done.

Hopefully a surgeon will consider this something that can be dealt with and the clot can be removed. Since I’m not a clotter by nature I won’t have to worry about recurrence so much. I know what to look for now.

 Posted by Douglas at 1:37 pm  Tagged with: ,

Back to normal, but less bumpy

 updates  No Responses »
Jan 102009
 

I started at the anti-coagulation clinic yesterday so I’m not going to have to get a blood draw every few days to check my clotting levels, not I can have a finger-prick test and a little device tells me in 30 seconds. No more waiting at the blood draw center! Also with that I have to not take the multi-vitamin or the calcium supplement I was taking because they both contain a lot of vitamin K. I have to only have very small quantities of green leafy vegetables and broccoli and a few other foods. Other vegetables I can eat but still in less quantity than I was consuming before all this started (about 2 pounds a day).

The doctor said that when I started at the Coumadin clinic I could be more active and even though my levels don’t seem to be stabilized yet both the clinic and the doctor said it was good to be active as long as I wasn’t in danger of falling or bumping into things. So no scooter or bike riding for a few months, but exercise and running are fine. Any activity is fine as long as I avoid cuts and bruises. So with that yesterday I returned to the office, yay! I was glad to be able to discuss problems directly with co-workers instead of just in e-mail or IM. I’m keeping my leg elevated and straight when I feel like it even though the doctor said it wasn’t necessary. It just feels good to empty my leg after I’ve been up and about for awhile.

So what next? Now I keep getting my levels adjusted and around the end of March I’ll have another ultrasound to see if the clot is gone. If it isn’t then I’ll find out what the next step is then. If it is then I might be on Coumadin a little while longer until they are sure nothing is recurring. If it turns out I’m a hyper-clotter then I’ll probably be on some form of blood thinner from here on out.

 Posted by Douglas at 10:10 am  Tagged with:

Cancel that calf strain and make it a deep vein thrombosis

 Medical  3 Responses »
Dec 302008
 

My calf hasn’t hurt for a little over a week and the swelling has been steading going down, so when I woke up on the 25th to more swelling than ever I thought it would be wise to see a doctor. After all the morning Christmas stuff I mentioned that I would like to go to urgent care for my swollen leg. I didn’t have to wait too long to be seen. My pulse was strong and the rate was good. My blood pressure was excellent. The doctor came in and listened to my story and then asked for my diagnosis. I wasn’t sure I heard him right so I asked “My diagnosis?”

“What do you think it might be?”

“I think it might be a blood clot.”

He agreed, but wasn’t certain because despite my leg being swollen and red I had no pain which usually goes along with it. He went through some more possibilities before deciding that it was definitely a clot and sent me to Dominican for an ultrasound.

Dominican wasn’t crowded in radiology but there was only one radiologist on duty that day and that included covering the emergency room which was apparently crowded. The ultrasound tech. found the clot but couldn’t tell me because she’s not a doctor. She also said that I couldn’t get a CD of the images. It was cool to listen to my blood rushing when the probe was kept in one place. After that they sent the results to the urgent care and the doctor there called me back and teld me it was a large clot and that he was trying to get me some Lovenox from Dominican. Apparently the only pharmacy open at that point was in Watsonville and they didn’t have much. Domican had plenty but they didn’t want to give it up unless I was admitted to the emergency room so off to the emergency room we went.

Dominican was fast at getting me checked in and all the results were sent over to the one doctor on duty there. Unfortunately I seemed to arrive during a shift change so while I was put in a room and hooked up to the monitor I wasn’t added to the list. I was able to listen to the patients around me liek the woman across the hall whose husband died ten years ago that day. Forty-five minutes and still no doctor later Nicole flagged a nurse down to get some attention. The nurse then got the current doctor who knew nothing about my situation so the story got told again and they wanted to draw their own blood. For whatever reason they decided the side of my forearm was a good target (ow!) and we got to see my pulse jump to 92. The doctor decided I had a large clot and should have Lovenox and get started on Coumadin. He also ordered more blood tests to determine whether I’m a hyper-clotter or not so they needed another poke for that one. Luckily they decided to go for the crook on my left arm. I also got my first Lovenox shot (actually two because I’m big) subcutaneously on the sides of my stomach. We finally got out of there and went home where I put up my leg and we watched tv until I fell asleep.

I transferred to the bed and this morning the swelling was greatly reduced. I went to the doctor they set up for me to see as a followup and she said my leg was looking good and prescribed the rest of my Lovenox supply which Nicole or Julie will be lucky enough to inject me with later. The doctor saw no reason for or against using a thrombosis stocking so that’s up to me. For now I’m going to go without one I think.

How did it happen? No one is sure. One generally has to be a hyper-clotter, have some trauma or surgery recently, or be sitting or laying in one position for about 20 hours. I wasn’t sitting around that long and there isn’t any recent trauma so I have to wait for the results on the hyper-clotting. My aunt recently had problems with clots that the doctors believe are left over from a car accident four-years ago so if that’s the case this could be related to my long ago scooter accident. The doctor says that’s not likely though.

So now it’s drugs and rest for the rest of the weekend.

 Posted by Douglas at 7:05 am  Tagged with: ,

Update of the idle leg

 Medical  No Responses »
Dec 302008
 

Julie lent me her foam wedge from when she shattered her ankle which has been the perfect tool for keeping my leg elevated. I’ve spent most of my days since then on the couch with my leg elevated, reading and watching movies and checking to make sure I haven’t thrown the clot.

In the mean time I have to not do anything and that’s starting to drive me crazy and it’s making me feel a little bad that I can’t help out with anything around the house. Nicole will let me do something simple like carry dishes to the kitchen but beyond that I have to stay still until the Coumadin reaches a stable theraputic level.

My parents came up for the day yesterday which was really nice. It gave a Nicole a small break from watching me to see if I’m still ok. We got to exchange Chanukah gifts on the final night which looked like was going to have to happen some time in January or so. My father took me to the lab this morning for a blood test to determine whether I still needed the Lovenox shots or not.

There was only a 5 minute wait at 7:30 in the morning and theblood draw was only two vials. It was marked for same day processing so I called the doctor at 2:30PM to see if they had results but nothing was there yet. I called again at 3:30PM but still nothing. I called again at 4PM and they said they were going to call the lab, but still I heard nothing back. Finally at 4:30PM I said I really needed to know since I take the shots at 5PM and I needed to get to the pharmacy if I needed to get more. They promised to check and call me back. In the meantime I called the pharmacy to make sure they got the supply they said was going to be in today and they confirmed that my prescription was filled and waiting. The doctor then called back and told me my INR levels were at 3.6 (they need to be between 2.0 and 3.0) so no more Lovenox shots in my stomach (yay!) and no more Coumadin today or tomorrow. I’ll also be glad to get my blood less thin because my hands will stop getting tingly when I hold them up reading too long. In the meantime I need to avoid things that will make me bleed because clotting will be a problem. My next blood test is Wednesday morning and that afternoon I’ll find out how much Coumadin to take next.

 Posted by Douglas at 1:57 am  Tagged with:
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