Sunday, January 27, 2013

Update 1/27/13

It's been around 9 months since I last updated this blog, so I thought I'd go ahead and give everyone an update about what's been going on.

I am pleased to say that since my last post in April 2012, my medical issues have been pretty much nonexistent.  I haven't had any more episodes and have pretty much only had routine doctors visits.  I see my rheumatologist every 3 months or so and he continues to run a ton of tests hoping to get some answers as to what actually happened in March 2012.  Unfortunately all of his tests come back with the same answers.  The only two definite things that he seems to be sure of is that I have Raynaud's phenomenon (which I was originally diagnosed with in 2006) and antiphospholipid antibody syndrome.

The antiphospholipid antibody syndrome doesn't give me any outward symptoms and I am still on coumadin to try to prevent any future clotting.  My doctor will decide in March (the one year mark from my hospitalization) whether or not he wants me to continue on the coumadin for life.

The Raynaud's phenomenon has been giving me a lot of problems since the weather has gotten colder.  My hands and feet regularly go numb and turn white or purple.  Sometimes it takes a long time for my finger/toes to return to their regular color and to stop throbbing.  I've also learned that the coumadin makes me really cold all of the time.  There are some days where I have a hard time getting out of bed because I am so cold.  I spend a lot of time sitting with an electric blanket!  I'm hoping that all of this will go away once the weather warms up again in a few months.

Here's a picture of what my hand will look like.  It's not the best picture, but it should give you an idea.


In December I met with my gynecologist and we discussed a hysterectomy.  All of my doctors have advised me against getting pregnant again for several reasons - 1) pregnancy may have triggered my hospitalization and could potentially trigger another episode, 2) I am currently on coumadin, which can cause birth defects, 3) I would have to continue on blood thinner throughout my pregnancy, which would mean lovenox shots.  So along with a few other reasons/issues, we decided it would be best to go ahead with the hysterectomy and it was scheduled for December 17th.

I had to meet with all of my doctors (rheumatologist, hematologist, gynecologist, cardiologist) and have all of them in agreement before I could proceed with the surgery.  It seemed like a lot of coordinating, but I finally got everyone's approval.

The week prior to surgery I met with the cardiologist and had another echocardiogram.  He said that my heart function is pretty much back to normal and he doesn't think that I am at risk for future heart health issues, so that was a relief to hear.  He wants to see me again in a year and said we may repeat another echo to make sure things still look good.

The week prior to surgery I also met with my hematologist and she devised a plan to bridge me off of the coumadin and onto lovenox for the surgery.  So prior to surgery Rob had to give me lovenox shots in the stomach twice a day.

On Monday, December 17th I had my surgery, and the doctor told me that everything went well, but that I did bleed more than she was anticipating.  So she wanted me to wait a few days before resuming my lovenox shots post surgery.

I stayed in the hospital one night and then came home.  I rested at home the rest of the week while Rob took care of the kids.  During the first week I had some soreness and light bleeding which had pretty much stopped by the end of the week.  I stayed off of my feet for the rest of the week and on Monday, December 24th we drove to Rob's parents house for Christmas Eve.

Rob's whole family was in town and I spent a good portion of Monday and Tuesday standing on my feet talking to everyone.  I wasn't really doing anything else other than standing more than I had been the previous week.  Well on Tuesday afternoon I started bleeding again, and it quickly started getting heavier.  I passed a clot about the size of a dime and started getting a little concerned.  Over the next few hours I passed several clots and they continued to get larger, to the size of a strawberry.  We called the on call doctor and explained that I hadn't been bleeding at all, and I'm on blood thinner, and now I was bleeding heavily and passing clots.  She said not to worry, that I had probably just over done it, and to get off my feet again.

I already had a follow-up appointment scheduled with my doctor for the next morning, so we decided to just wait it out and see what the doctor had to say in the morning.  So the next morning I met with her and she said the same thing, to just get off my feet and take it easy and see if that would help the bleeding to start tapering off again.  Then I went to my hematologist to check my blood levels and see if I could stop taking the lovenox shots and just take the coumadin.  She told me to stop taking the lovenox immediately because it may have been contributing to my heavy bleeding.  So I stopped taking the shots and went back to taking it easy, and things went back to normal over the next week.

It's been 6 weeks since my surgery and I feel a lot better now.  I still feel like I tire out pretty easily, but I'm not sure if that's related to surgery recovery, or just being a mom of 3 young kids.

So that's where things stand right now.  I go back to see my rheumatologist on February 4th, so I'll see what he has to say.  Thanks for all of the prayers, calls, cards, visits, food, and help with the kids during my recovery from surgery.