New Plan

I have an hour... seems like a good time to blog. But first, Happy National Rare Disease Day! Here's my challenge to you, today, or whenever you are reading this, learn about Myasthenia Gravis or another rare disease of your choosing and then go out and explain it to one other person who doesn't know about it. Think about how many more people we can make aware if we all do that!

So, plans for admission fell through. This really is the story of my life and I should probably write a book about it. I also probably should have majored in English and become a writer because that's something I love to do and can do on almost every day unless my arms are at their weakest. I guess it's still an option... perhaps. Anyways, getting off topic... Yesterday was a bad day, horrible angry frustrating sad day. Thanks for allowing me to have one of those. Thank you to everyone who still showed support.

Yesterday I woke up to a phone call from the surgeons office telling me they canceled my admission for next Monday and that my primary says I do not need plasmapheresis so I can talk to him, figure it out with him then decide what to do. Ok, first of all my primary is not the one to make the call on that, my neurologist is, and my neurologist already has. And second, once again why the heck were you about to admit me not knowing what was going to happen? And third, I'm supposed to figure it out??? The patient is supposed to coordinate their own admission? Well I ended that conversation with telling them that this is absolutely ridiculous and that I'll just get it done at another hospital if they can't figure things out. Let's call this hospital 1 and "another hospital" hospital 2.

Then I get a call back from hospital 2 telling me they don't think they can do surgery until at least mid-end of April. That was the point that I said what's the point. What's the point in pushing forward on this, when its past the 3 year mark, when every time I put effort into something it doesn't work out. So you know what I did? I laid down... mainly because my headache and neck pain were beyond horrible.... but I laid down and I said to myself I'm done. I said to myself if this surgery is supposed to happen then it's going to happen without my doing anything. And I thought, since that's probably impossible, it probably won't happen.

God must have stepped in at that point. After laying down for a few hours I got up and checked my email. First email was from the nurse of the surgeon at hospital 2 to call her. I called her. She told me the reason they can't do the surgery immediately is because the doctor is out of the country for 2 weeks in March and they could do it on March 11th but there is not enough time for plasmapheresis and even if there was the surgeon is leaving 3 days later and they don't want him to be gone in case of any complications I have. I said ok I can understand that. So she said the absolute soonest they could do is sooner than the end of April but still in April. April 9th. Sounds like a random date to anyone else but rang as a total sign to me... April 9th is EXACTLY to date 3 years from my pneumonia diagnosis. They said they think MG started with pneumonia and surgery is best within 3 years. Now, yes I know I was sick prior to actually getting diagnosed but I'm not going to be picky with my facts here. How much more of a coincidence could it be? I said alright, if that's the soonest and it's not working out with the other hospital, I guess that's what we have to do.

At the same time I kept wondering, should I really do this at hospital 2? Should I really say forget it to hospital 1 which was the plan all along? What should I do??? I kept asking even though it seemed like the answer was thrown right to me. As I'm wondering this my primary from hospital 1 calls. Come on really?? I ask for clarity and now I get more confusion. He apologizes for all this craziness... there was some miscommunication, lack of communication, people obviously not on the same page. But then he tells me he still doesn't know about the plasmapheresis and that even if I get it that it would be outpatient not inpatient. I explained to him my neuro made that decision and how some people are even in ICU for plasmapheresis especially the first time. I told him honestly I'm considering going to hospital 2. He said he wants the best for me and I can choose whichever I feel is best. Now, he is a very good doctor, and him not urging me to go only to his hospital is also a good thing. The problem comes that he isn't the specialist in MG so I can't really follow his guidance on that. But I kept wondering what should I do.

When I went to sleep I asked for clarity on which hospital to choose. I woke up remembering a dream that I was walking around my parents house literally right after surgery with absolutely no pain and no "tipping" (my MG symptoms). Problem is in my dream I didn't know which hospital I had come from! While still laying in bed and still struggling with a decision I grabbed my tablet (I hate that I have one but my parents of all people got me hooked on the thing lol- it is just a kindle so I'm not super technology advanced yay! ps. I still own a basic flip phone hahaha). Anyways. I laid in bed and went on facebook and asked for advice on which hospital listing some pros and cons. I said to myself whatever the first response is I'm going to do. Seems like a rash decision but this process has been going on forever and I need it to come to a conclusion. Well it was said go to hospital 2. And furthermore it was pointed out to me, while hospital 1 is an excellent hospital it is not the hospital that specializes in MG. Though hospital 2 will most likely not be a private room, have a more stressful environment, be more inconvenient and expensive for my parents to get to and park, and admit me at a later date meaning more wait time... none of that should factor into my decision. What my decision should come down to is who is going to provide the best care for this specific disease and surgery. Well, the answer is hospital 2. The surgeon is rated the 4th best robotic surgeon in the world, not just Illinois, not just the US, the world! That is amazing. And hospital 2 is where the MDA clinic is, the neuromuscular clinic is, and my MG specialist neurologist is. As clear of an answer as it seems I don't know why I'm having such an issue with it. But regardless, hospital 2 it is.

I'm still slightly annoyed, discouraged and worried about this being 3 months beyond my return to Illinois. The whole plan was to get me back, have the consults and get the surgery within weeks. It was all in place to go, and it all crumbled. Perhaps I wasn't supposed to go to hospital 1 to begin with and thus all the problems keeping me from going there. I'm also kind of sad that yet another holiday will be spent in the hospital... Easter as well as my birthday. But it's almost a tradition at this point that every single holiday I am either sick or in the hospital, I guess in that way its kind of funny. My friend turned it into a positive for me. He said "look at it this way, it ONLY took 3 months to get in with the 4th top surgeon in the world." I guess if you say it like that, that's pretty awesome.

And thus, new plans which at this point I'm going to say are tentative basically up until the point that I'm literally receiving the plasmapheresis and then knocked out for surgery: March 25th admission for plasmapheresis, April 9th surgery date... at [name removed] in Chicago, IL.

And now I'll ask for prayers... to keep me healthy during this one month waiting period so that it doesn't have to get pushed back even further! Thank you!