That title is, unfortunately, no rhetorical flourish. About two weeks ago, I nearly bit the big one.

 

Regular readers will know I've had a permacatheter in for seven months in order to undergo plasmapheresis. Well, thanks to that cath and probably my love of green leafy vegetables, I developed blood clots. One landed and lodged in a vein centimeters from my heart. Another took up residence in one of my lungs.

 

As a result of the clot near my heart, the vein became clogged and blood couldn't flow freely, causing my neck, jaw and face to swell up to first comical proportions, than to "Mon Dieu" frightening levels. It was the swelling that drove me to the emergency room on February 21st. A couple of CAT scans later, I was admitted to the Critical Care Unit under strict orders not to leave my bed. I couldn't even get up to pee (hello, Foley catheter). I wasn't even allowed to take my socks off. It was a level of "do nothingness" that despite having CIPD, I have never experienced.

 

 

On the 23rd, I had surgery to implant another catheter (me and these dang on caths) that targeted the deadly clot. This one was attached to an EKOS machine and dissolved the clot. On the 24th, I had an angioplasty to widen the vein to get the blood flow back to normal. The literally-inflated head soon returned to normal. My cheeks are back to their normal puffy size. The hospital staff who saw me on the 23rd and came back to check on me on the 25th bugged out at seeing me. One sputtered out how "small" and "pretty" I actually am. Well, both adjectives are debatable, but I certainly don't look like Eddie Murphy or Martin Lawrence in a fat suit anymore, and that's awesome.

 

I came home on the 27th. Every night since, I've been on blood thinners that have left me feeling freezing in our 75 degree apartment. I went to bed in full sweats with an extra blanket last night.

 

I inject myself with Lovenox every night, a couple of hours after taking Coumadin. Blood thinners. I'll be taking the Coumadin for the next six months- at least. I can't munch on spinach and broccoli anymore. Well, it's stictly restricted because they are so high in Vitamin K which promotes the blood clotting factor. Ditto kale and collards. 

 

 

To add insult to the very painful injuries, my insurance company denied my appeal to cover the stem cell transplant for the third time yesterday. After a twenty minute conference call with me and Dr. Burt of Northwestern, which I updated the panel on my recent near death experience resulting from the catheter and the fact that it had to be pulled, thus halting any plasmapheresis for the foreseeable future, they coldly informed me that I was still denied. Despite the fact that have probably spent double the cost of the stem cell transplant already on treatments that are now failing, they still denied me. So from this point on, I intend to put Horizon Blue Cross & Blue Shield of New Jersey on full blast. I know this blog has a readership of about twenty, but it's my platform, and I intend to use it. Horizon, despite stating that I meet their three point criteria for the transplant, despite admitting that I have undergone the the three standard treatments for CIDP (steroids/immunosuppressants, IVIG, plasmapheresis), still want to deny me.

 

Okay. I have no intention of quiting though. I'm now entering the third level of appeal, and if I have to appeal all the way up to the Surgeon General (or Dr. Oz, whoever weilds more power; I'm thinking Oz), I will. I have a 50/50 shot of developing scar tissue in that vein which will necessitate another surgery (by the way, I was wide awake for every painful moment of both surgeries). If I've got to fight my own busted immune system and now my own blood, you best believe I'm up for battling Horizon. Bring it. Even if I lose, I believe it will be just that much easier for the next person. 

 

I want to again thank everyone who visited, called, emailed and texted me and Keiron over the past couple of weeks. The prayers and words of encouragement have been amazing. If you didn't know all this occured, please don't feel bad/offended/fill in the adjective. It happened. Don't get stuck in your feelings. Pray now. Text now. Do something other than mope, because I'm not.