Sunday, November 14, 2010

The best laid plans of mice and men

I've been home from the hospital for about a week and a half now. If you've been waiting for an update on the wonderful surgery I had to endure before I went home, than you will LOVE this post.
It was determined by an MRI with contrast that I had a clot in my superior vena cava. My port catheter seemed to go straight through the clot, and that's why my port still worked in spite of the clot. Seattle decided based on the MRI that they wanted to have a stent placed in my SVC before I was listed. I would do ANYTHING for transplant, and I really do believe the transplant evaluation weeds out the lesser determined people. Because god only knows why someone who doesn't really want a transplant would endure all of that. So there I was, a girl willing to do anything, who had to do EVERYTHING and a lot more.
The plan was to go through the femoral artery in my groin, move the catheter temporarily and get the clot out. Wham bam it's done. Unfortunately for the team, my poor family and friends, and most of all me...I am a freak of nature, and the clot decided to be complicated.
Here's what really happened.
The clot was wrapped around the catheter and had adhered to the walls of my SVC. They were unable to place the stent without locking in the port which is far too old to be left in there, the call to not do anything was made. In the midst of all of this, a little piece of the port catheter that was sticking out of the clot broke off and decided to go for a crazy ride. The doc went in after it and managed to get most of it, however a little piece lodged itself in my upper right lung. The whole procedure took 7 hours, and went until 12 am. They went in once in my right femoral, twice in my left femoral, and once in my neck. I'm sure my retelling is not that great, and there might be some blank spots but I was out of it and couldn't make sense of it all in my drugged haze. The conclusion is that the clot didn't get removed, my port didn't get replaced, no stent was placed and I'm going to have to go through an even more invasive surgery to fix all this.
A day prior to the procedure my nose started bleeding every time I coughed really hard. The reason is still a little unknown, but it was thought to be the oxygen that over time eroded one of the superficial vessels in my nose, and the pressure from my cough would make whatever clot had formed burst. My nose would clot and then I would cough and it'd bleed again. It was a gross mess!! It continued for several days after my procedure too. In addition to the nose bleed, I had a fever for several days but had no infection, I couldn't hold any food down, and I was in a lot of pain. There were 2 small hematomas that formed; One in my neck, and the other in my left groin. For about a week I was taking pain meds pretty consistently.
All of it was way more disgusting and disturbing than I can even put into words, and I'm disappointed the stent wasn't placed.
BUT I'm grateful to my cardiologist who knew better than to do it anyways, to my doctors for allowing me pain meds, and to the wonderful set of nurses I handpicked for post procedure.
Out of all this I learned a couple things... The first is that even on the surgery table you can make jokes about funny socks, and David Cassidy. The second is that I have the BEST care team in the world. My mom and my husband are so amazing, and they work so great together as a team. I knew my husband would be there for me and care for me, but I had no idea to what lengths he would actually go. Now I know there's nothing he wouldn't do to help me, or care for me. (which is EXACTLY what you want in a husband!) As for my mom.....Well, I couldn't dream up a better mother. She is so many things to me! My survival is so intricately entwined with hers, and I can't imagine any part of my life without her in it.

So the procedure did NOT go as planned, but a new plan is in the works and we'll know soon what is to be done about it. I do know this though, I'm in GREAT hands! I just have to keep the faith in all members of my care team, keep a lid on my misemotions, and not panic. I will get on the list, I will get my clot fixed, and I will be okay. I know all of that, I just have to keep knowing it in spite of whatever I have to go through to get to the end. :) But THAT is what I do, it's what I must do. Suck it up, be brave, and KNOW that everything will all work out the way it's supposed to in the end.

2 comments:

Luisa said...

Hi Phoebe, I'm Luisa--17 with CF. I just wanted to say I loved this post (not the whole port, clot, stint episodes) but when you mention your support system it made me feel warm inside (I know, I'm lame!)
I hope everything clears out and you have a simple road ahead to NEW LUNGS!
-Luisa

Mrs. Bliss said...

You are an inspiration. I was praying for you and worried for you that whole night. Thanks to Auntie Gaye and your momma for keeping us in the loop. It will all work out the way it's supposed to as you said! And yay for supportive awesome husbands & mommas!