Admit Date Set

So yesterday I received a call "Hi I'm calling to go over your admission for tomorrow." What?! That was news to me. I know I've been waiting for this to happen for over a month but 18 hours notice is not what I was expecting! I told her my parents have appointments tomorrow, and I can't be there in that short of notice. So I was told to call the surgeon's office in the morning. Good thing I did because I also called my insurance and I was not yet pre-certified! That could have turned into a major problem, yikes.

So, now, if all goes as planned with insurance and them having the bed available (I still don't understand if I'm a planned arrival how there might not be a bed available) I will be admitted next Monday, March 4th to [removed since this is no longer the plan].

The plan is to have a minor surgery to insert the catheter/central line into my neck or chest for the plasmapheresis treatments. I'm actually more nervous about this than the major surgery because I most likely won't be knocked out for it. I've never had it done before but I hear the treatments are similar to dialysis. Basically the line has tubing for "in" and tubing for "out". Then I'm hooked up to a machine that removes my blood, separates and takes out the plasma, then replaces my plasma with donor plasma and puts the blood back in me.

Each treatment takes a few hours on average... but when I got IVIG (giving me donor blood product but not taking anything out-normal IV not a central line) that was expected to last a few hours per treatment and my treatments took 9-14 hours!! They needed to do it really slowly to minimize the side effects I was having. So I don't know how long each of these treatments will be but I'm expecting a lot of reading/browsing the internet/watching movies to take place because I can't move while the treatment is happening. I will be getting 3-5 treatments every other day, so I'll be in the hospital at least 6-10 days before surgery.

The plan is for surgery then to immediately follow within 24-48 hours of my last plasmapheresis treatment. The purpose of this is to prepare my body to tolerate the surgery. By removing my plasma, it is supposed to remove the "bad" stuff. Of course that also means the possibility of lots of side effects. The most common problems that happen are your blood pressure dropping which I'm nervous about since mine already drops pretty low, electrolyte and other levels dropping because along with removing the "bad stuff" it also removes the "good stuff" so supplements may need to be infused. Bleeding or blood clots can be a risk. And of course the serious reactions that can happen with anything. I will probably have a hematologist overseeing my treatments and monitoring all of this hopefully very closely.

As for the surgery I will be having it done robotically. This means the surgeon will be making multiple incisions on the side of my chest and using a robot to go in and remove the thymus. The benefit to this is the precision used with the robot. The drawback is because they won't be splitting my sternum they don't have full easy view of my chest. Some complications that can happen include hitting a main nerve that could cause severe problems, bleeding, infection, and anything with the lungs. They have to collapse one of my lungs in order to clear past it to get to the thymus in the center of my chest. This means some increased pain after surgery as well as the need for lots of breathing exercises to get those lungs functioning once I'm off the breathing tube.

Following surgery I'm expected to stay in the ICU about a day if all goes well, and then in the hospital another few days to a week again if all goes well. Then comes the recovery at home that can take months. From talking to others I can expect to have to sleep sitting up for weeks to months and be on pain meds for a while. Whether or not the surgery helped me any will not be known for at least months to years.

I am staying hopeful for successful plasmapheresis treatments and a successful surgery with no complications, little pain, fast recovery and eventually some improvement or better yet remission of MG! I am staying hopeful that I can return home before my birthday April 6th! Haha!

I will try to post when I can from the hospital for updates. Please check here rather than emailing or calling to ask since it will be hard for me to respond to everyone. But feel free to send some messages for me to read since it seems like I'll have quite a long time of laying in a bed. Thank you for all your support and thank you for your prayers!