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!

Or Not

So angry right now... and guess what I've been really positive and happy and all that so allow me a moment to be angry and rant.

I already explained some of the story of how I got a call about going over admit plans when I didn't even know I was being admitted so we pushed it back a week. Well in addition to calling to figure out pre-certification which my insurance requires I called the surgeon (who was organizing all this) because I wanted to go over some questions/discuss the plan of attack or whatnot. Well first getting someone in the office to do pre-certification has been next to impossible. They said they don't do that. Ummm my insurance requires it! Then the surgeon calls me and I ask my questions and she doesn't seem to have any of the answers. She just kept saying that each thing will probably fall under someone else. She can't tell me when the line will be put in, who will oversee my plasmapheresis, how many treatments I'll get or when they'll start, or what the date of surgery will be. So I ask who that someone else is so I can discuss the plan. I'm told I can call the hospitalist since the primary I'm set up with here uses a hospitalist for his inpatients.

I call that number and get a very nice lady who listens to my whole story and says she will get in touch with whoever she can and try to figure this out for me. Next I'm receiving a call from the surgeon's office telling me no one knows what is going on, everyone is trying to hand off managing my care to someone else and they don't think I'll be able to be admitted Monday. AND they add I might need to get an appointment with a neurologist on staff there before being able to set up admission!

Are you KIDDING ME??? If I didn't already cover all of this with them then ok, but I DID! Prior to even making arrangements to leave Texas, I was assured that all of this was in place. I was assured it would be ok if my neurologist isn't out of the same hospital, I was assured the surgeon would oversee everything, I was assured I could be admitted first thing in February (well that should have been my first sign seeing as were entering March). Then when I met with the surgeon I was again assured all of this. She was even the one to suggest plasmapheresis! Now I'm straight out told no one knows what the plan is. And yet they were going to admit me?? Admit me WITHOUT a plan in place??? Admit me without pre-certification? Admit me without knowing who was in charge of my care? Are you SERIOUS? Wow.

If I had no time restraints then I'd be more go with the flow, but I do. Best results within 2-3 years of onset. 3 years is next month. NEXT month. After that, why would I even go through with a major surgery inside my chest?

So now I have no idea what's happening. My muscles are spasming and fatiguing like crazy, no surprise with stress making MG worse. Watch I'll land in the hospital not on an arranged admission but because I have to go to the ER. This is insane. I'm about to say forget it. I try so hard in everything I do and I rarely have anything to show for it. Nothing I work hard for works out. Why do I bother? Why do I put so much effort into everything and receive nothing in return? Am I not supposed to get this surgery? Am I supposed to just be back in IL without getting the surgery? Am I supposed to go back to Tx? Am I supposed to be..... this.... that.... here... there... with..... without.... I mean seriously God, please answer me. Please provide clarity and direction and get me there!

Ignore my last post, I'm guessing that's no longer the plan, not that it actually seemed to be one to begin with apparently. Who knows. Story of my life.

I need prayers. Not for me this time. For the staff to get their act together. Thank you.

End rant.

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!

Hi everyone! I made my attempt at blogging once before, but I stopped. I stopped because people were questioning me on if there was really anything wrong with me. I know that's no reason to have stopped, but I did. But I now have a definite diagnosis, thank God! And it just so happens it is a very rare one. And within that I'm even more rare because my body has not responded well to treatment thus far. So I am once again attempting to blog for the purpose of MG awareness. Also, since I will soon be getting surgery and will be in an out of the hospital possibly the rest of my life, I thought this is also a good way for everyone to keep connected with whats going on. I sincerely appreciate everyone who has shown support through the past 3+ years of struggling to find answers as well as everything else going on in my life. Please, ask questions, say hi, check my blog often, promote awareness. I just ask that you don't say anything negative on here. I've been trying very hard to be more positive and stay encouraged through all of this. This is not a place to bring me down but a place to become aware of my disease and help me through it if you so choose.

It has been brought to my attention that posting a comment on here isn't the easiest thing... sorry about that. I didn't realize it, but it looks as if you need an account with one of the things listed (google, aim, livejournal, etc) in order to post. So my suggestion is if you don't have any of those either create one just to be able to post, or email or facebook me. I'll still be checking email and facebook, but while in the hospital, it is going to be a lot easier for me to update one main site than respond to each individual email.

I have created several different pages you can find links to on the top to give you more information on what Myasthenia Gravis is, my story, how you can help and questions and answers you may have.

Also, please note nothing said here is to be taken as factual medical advice for treatment, diagnosis or otherwise. I am not a medical professional and everything stated should be only taken as my own insight on this. Thank you for reading!!