So close, yet still so far away

Well, I believe when I left off we were just days away from having a brand new procedure performed that would rid me of both my blood clots and my filter.  It is kind of twisted I guess, but I was pumped! I was so ready to be done with all of this and try to get some sense of normalcy back in my life.

So, the doctor called on Monday of the week after Thanksgiving and said the surgery was scheduled for Thursday morning at 8.  I needed to be admitted to the hospital the day before and would probably have to stay in the hospital through Friday.  I was going to be missing three days of school but it was worth it to finally be done with all of this.  That Tuesday night I stayed at school way too late trying to get everything organized so I could have a sub for the next three days.  Having a sub in middle school is ten times easier than elementary school, but it's still work.

Late Tuesday afternoon the doctor called and told me he wanted me to go to Harris at 7am to have a venogram so he could get a good look at the clot before they did the surgery.  After that we would head over to Plaza and be admitted.  My Mom and I got up early and took care of the venogram and then headed over to the other hospital.  Through several strange and disconcerting moments we soon realized that things weren't going as planned.  And really, why would they??  Absolutely nothing has really gone as planned in this whole process.

Anyway, the doctor eventually let us know that I didn't need to be admitted a day early and I needed to come back the next morning at 6am.  I was home from that little adventure at about 8:45.  I totally could have gone to work!!  Argh!  About 4 o'clock that afternoon the doctor called and said that the venogram showed that the clot was less than half the size it was.  Apparently my body was dissolving it on it's own.  He also felt like we could wait about a month and check on the clot again.  Hopefully it would all be gone and then we could remove the filter and be done with all of this.  He didn't feel like the surgery would be in my best interest at this time.

While I was thankful to not have to have a potentially risky procedure, and even more thankful that the clot seemed to be taking care of itself, I was bummed.  Waiting another month meant three very important things.  One, I was going to have to keep giving myself Lovenox injections twice a day for 30 days (again, I hate them).  Two, my next venogram and possible filter removal wouldn't be until January...just in time for all of my deductibles and out-of-pocket maximums to start over.  These procedures that wouldn't have cost anything will now likely cost thousands of dollars.  Swell!  Thirdly, this whole ordeal is not over yet!  And that is where we stand today!

So close, yet still so far away!!

The end...we thought.

I had my IVC Filter placed on September 14th, and I had to wear the pink cast for one more week after that.  I don't think I've ever looked forward to anything like I did getting that cast off.  It was probably the most unpleasant experience of my life!

Anyway, I went from the cast to a walking boot for two weeks (which included a trip to Disney World - more on that later).  After two weeks of that, I was set free!  I was getting around pretty well but didn't quite trust myself.  I would find myself trying to walk without bending my ankle, so afraid that I would do something to it and damage it again.  In reality, my ankle is probably stronger now that than it's ever been...amazing what a little hardware will do.

Since I was back on my feet and moving around quite a bit, and enough time had passed that it was likely the blood clot in my leg had time to dissolve we went ahead and scheduled the IVC Filter removal.  I had planned to have it done while I was out of school for Thanksgiving Break.  I was strangely excited to have it removed because it would mark the end of a crazy 6 months and hopefully end the even crazier medical bills!

So, the morning of November 20th, I went in to have my filter removed.  I was a little more nervous this time because they were going to have to go in through my neck, through my heart and then down to grab hold of the filter and pull it back out.  C-razy!  Just didn't seem right.  I was relieved when they put a little something in my IV and I passed out.  I woke up thinking it was all over.  I was wrong.  I was still laying on the table in Interventional Radiology when I woke up.  The super nice nurse, who had been with me during the filter placement, had a pretty concerned look on her face.  They had also turned off the fun music I had fallen asleep to.  When I asked if they got it out, she told me they had to stop the procedure.

What now???  They showed me on the gigantic screen that the IVC filter had done it's job and "caught" several pieces of blood clot.  Unfortunately, there was a also a large piece of clot above the filter.  As in, I was at serious risk of pulmonary embolism again and I didn't even know it.  They admitted me to the hospital right away and it looked like I was going to be having hospital turkey for Thanksgiving.  By Tuesday night they had 3 different doctors on the case as well as my doctor in Dallas.  They decided since the clot posed the biggest threat at the moment I needed to go ahead and begin Lovenox injections again.  Yay!!  There was some talk about placing a second filter above the first one but nobody seemed too confident that was the best option.  Since it was the Holiday it didn't look like anything was going to happen that week so the doctors released me to go home on Wednesday, as long as I did the injections and promised to follow up with the surgeon.  I was so, so, so thankful to get to spend Thanksgiving at home with my family.  We had a great day, including an epic Nerf gun fight...Mom, I still don't know how that dart ended up in the mashed potatoes! ;)

We got an appointment with the surgeon this past Tuesday morning and he felt like our best option was a brand new procedure that had been developed at Harvard and only done one time in Fort Worth. He went on to say that this was originally designed to be done on clots in the lung, but he did it on a heart, and feels pretty confident it will work for me.  So, he's going to perform a procedure on me that's really never been done before.  Awesome!  I can't wait!

He called me yesterday morning (Saturday) to let me know that the surgery would be performed at Plaza Hospital instead of Harris because there would be too much red tape there, being a brand-new procedure and all.  Awesome!  He's supposed to call tomorrow to finalize the details!

So, hopefully, sometime this week it really will be the end of this crazy story!

Just when we thought the drama was over...

School started the week after I had surgery on my ankle.  I was loving my new job at the middle school but it was all I could do to make it through the day.  When I came home from school at about 4 I went straight to bed.  And I stayed there all night.  Time went quickly though and before I knew it, it was time to get the bandages off and get a real cast.

Here's the incision with lots of stitches...

Here's the bright pink cast I chose...

And, as you can see, my good friend, Meagan was in town so she helped me paint my toenails.  She enjoyed me being captive a little too much!

Things rocked along quite well for about a week.  One day, my leg felt funny all day.  It was really swollen in the cast, which you can imagine is quite uncomfortable, and the back of my calf was hurting.  I really didn't think much of it, just that I should probably drink more water and keep my foot elevated more.  I was at my parent's house for dinner and I mentioned the odd feeling in my leg to my Mom (a nurse) and she immediately said we were going to the emergency room.  Um, no thanks Mom.  I didn't have time or energy for the emergency room!  She insisted though, because she suspected that there might be a blood clot in my leg. And she was right.  Every time I think of having a blood clot I think of this scene in Willie Wonka and the Chocolate Factory...



So, on top of everything else I've dealt with, I now had a blood clot measuring from the middle of my calf to the middle of my thigh.  Apparently this is quite a dangerous condition.  They wanted to admit me to the hospital that night but I fought it because I hadn't had a chance to prepare a SUB folder yet!  It would make me look really bad if I had to call in sick unexpectedly and didn't have a plan!  I talked the doctor into letting me go home as long as I promised to take it easy.  I went to work the next day.

They also wanted to put me on the normal course of treatment for a blood clot, blood thinners and anti-coagulants.  They gave me a prescription for Lovenox injections.  Yay!!  They hurt, a lot.  I was also instructed to consult my hemangioma doctor to make sure there wouldn't be any added risk for that hemorrhaging again.  We called Dr. Gilbert in Dallas the next day and he didn't think that blood thinners would be a good idea and suggested that I have an IVC Filter placed.  This didn't turn out to be that big of a procedure but I found it very interesting.  I was awake the whole time and watched on the screen as they placed the filter.  The doctors were optimistic that the filter would only be needed temporarily and we could have it removed in about 60 days.  So, as far as we knew, things were looking up!

Once again, I wish that was the end, but, it's not!!