Goodbye Thymus!

Hi everyone!! This is the first day I've had my laptop... first day I was strong enough to use it. I couldn't wait to get on here and blog lol... I really do love writing.

So, my thymus is gone!! Woooo! I waited so long for that day to come, what a relief for it to be over with. Tuesday morning I had to be at the hospital at 5:15am. It was a very stressful start. Stress 1- The house alarm went off at 3am... quite the wake up call... no worries though just the storm. Stress 2- Then we get to the hospital only to find the doors locked and a sign saying they open at 5:30am. Well excuse me but I was very clearly told to go through the main doors at 5:15am and that the doors would be open. Fortunately, there was a security woman nearby who let us and another women in the same problem inside. Stress 3- Because they technically "weren't open" yet there were no wheelchairs around. The worst thing for me to do would be in addition to all these stressors, walk my way up to where I needed to report to and exhaust myself right before surgery. I sat down as my mom insisted the security guard find a wheel chair. She called transportation only to tell my mom there was no answer and they must not be there yet. My mom told her that there has to be a wheel chair somewhere, perhaps ER, and someone needs to bring it over here. So we finally got the wheel chair and got me to where I needed to report to just in time. Stress 4- The receptionist asked my name, looked through the binders of patients charts and mine wasn't there. Not what I needed to hear, but luckily they finally found me. Time after time this hospital proves to just not have it together. But again I reminded myself I'm here for the surgeon, nothing else.

So they prepped me, kicked my mom and dad out, and said they were giving me my "first cocktail to make you a little tipsy." I guess it was something to begin the anesthesia/sedation process as they wheeled me through the white halls. Then they strapped me down to the surgery table, marked my surgery site and the last thing I remember is them putting a mask on me. About 3 hours later I remember waking up as they took the breathing tube out. The first thought that went through my head was "I made it, Oh my God I'm alive." I didn't doubt this surgeon's ability but there is never any promise of anything. I then remember them wheeling me through the halls to icu as I was thinking to myself I really want to start a conversation with every person we pass but I probably shouldn't. Oh the fun times of anesthesia. They put an oxygen mask on me and I don't remember much else.

About an hour and a half later I finally asked if my parents were allowed to see me yet. The nurse told me they had no contact for them. I said yes they do and I will tell them the number again. I did and they called and moments later my parents arrived. My parents were never told they could come see me, they had no idea! Goodness this hospital is a mess. But my parents were visited by the surgeon after surgery and they told me the surgeon said everything went as well as it could have, no complications. Thank you God! How amazing! But, the surgeon said my thymus actually was enlarged! See some people with MG have an enlarged and/or tumorous/cancerous thymus... and in those cases there is no option, your thymus must be removed. On my CT that was 7 months ago it showed my thymus as very small, thus this surgery was an option not a requirement. At that time I was told if I didn't choose surgery that I need to get a repeat CT every 6 months to check if it changes. When I told that to them around the 6 month mark they said it's ok we don't need to. So we had no idea it had enlarged in that time... meaning I would have needed to get this surgery even if I didn't want to! The good news is the surgeon thinks that since it was enlarged there is a good chance it had to do with how bad my MG was and thus a better chance of improvement or remission in my future by having it taken out! (It is still pretty much a guessing game as to how/why/if the thymus really does affect MG but they find removing it can help).

The first 2 days I couldn't eat on my own... I mean I could swallow luckily since MG affects swallowing but the pain from the surgery and chest tube was horrible and I was too weak to lift my arms to eat. I was confined to the bed and experienced my first sponge bath the second day. Oh how fun. So needless to say I wasn't using the computer or phone or anything, pretty much just laying there sleeping when I could. Removing the chest tube was horrible! Ahh! They gave me extra pain meds right before and it still really hurt and then felt so weird like there was a huge hole in my chest... which pretty much there was. I was picturing this little tube like the size of an IV... well it was a tube that was like half the size of my wrist! How that fit through my ribs I have no idea. The next day they removed the catheter and after that I was helped up for the first time. Honestly, I was pretty amazed at how strong my legs were... not strong as normal people know, but strong in regards to MG and just coming out of surgery. And then yesterday I was walking around the room on my own for short periods of time. Also, yesterday I was moved out of ICU. Apparently I would have been moved possibly 1 day sooner but my surgeon was insisting on a private room and none were available in the step down unit. Well my new room is enormous!! Apparently this is the room they use for Bariatric surgery patients. There is another bed in here set aside that expands to 3 times the size of a real bed, and another toilet in here about 3 times the size, and a thing on the ceiling that is a lift from the bed to the bathroom to move the patient. I guess it's the only room they had, or my surgeon is really nice to me and gave me lots of space. Though my dad says I should just tell people that Bariatric surgery REALLY worked for me!

The worse part is figuring out how to control my pain. Because so many meds make MG worse and on top of that I have extreme sensitivity to meds, theres barely anything out there for me. They would only give me a very low dose of morphene and it really didn't help. Then they tried something else that also didn't help. So I finally asked for regular tylenol but a higher dosage. It's helping slightly but we really don't know what else to do. This morning my nurse insisted I try norco again and I didn't want to but listened to her. Well that was before eating breakfast and then shortly after breakfast I started feeling really sick. I couldn't eat lunch and have just been sipping gingerale and snacking on crackers. I'm not sure if it was the norco on an empty stomach (that I tell them I shouldn't do but they insist its ok) or the bad food here again, or side effects of anesthesia or something else. Regardless, the nausea along with the pain and still some breathing issues made my doctor decide he wants to keep me here longer to monitor me. Originally he thought I might get to go home today. I want to go home (or parents home rather), but I want to be well before that happens, so I'm ok with staying until then. The pain is a little better at my surgery and chest tube site but I've developed this pain on the other side of my chest/upper abdomen that feelings like a blockage to my getting a full breath. They were doing xrays the first couple days because there is a high risk of pneumonia after this surgery, but ever since the pain they haven't done another xray. It's like hello I'm having new onset chest pain on the opposite side, I can't breathe quite right and I've had pneumonia twice before... perhaps you should do an xray to make sure! No one listens to me. So I'm just hoping that pain and the stomach pain/nausea go away... and of course the surgery pain but I know that will take longer.

The good news is my vitals have been fairly stable, which is not normal for me. My blood pressure was actually 100something over 70something today! Crazy! My fever went away since asking everyone for prayer about that, thankful. Blood test results are fairly normal but that's another thing I wish they would test after new symptoms come on. I hate having unexplained symptoms. The other good news is apparently I have good genes... once again people think I'm like 18 if that. I've heard as low as 14... that's half my age! I mean I'm sure I look younger without make up but geeze. Hopefully those good genes will show up when I'm 40...better yet how about 80! And then there's a moment I have to share that I couldn't help but laugh. My surgeon, an Italian man, comes in with his "team", two other Italian men. The surgeon says he wants to listen to my lungs, you know to me that means he walks over and puts the thing up to me for a listen. Well instead all 3 walked over so I have 3 Italian men hovering above me. One says "how should we do this?" Another starts unsnapping my gown, and then my surgeon moves in for a listen. I don't know why this was funny but I couldn't help but laugh at the situation and my mom found it humorous as well.

So, overall my stay at this hospital has not been a pleasant one, BUT with that said I have zero regrets. It seems as if my surgeon did an amazing job and that's what matters. He also takes good care of me and basically whatever he says goes. Everyone here knows him to be the BEST doctor and you're almost treated better once they know he's your surgeon. The fact that he resembles a younger version of my grandpa makes it all the more comforting that I made the right choice. Only time will tell if this surgery did me any good, but at least I can't look back and say I wish I did that while I could. I did it, and I did it within the 3 year mark of onset- 3 years to the date.

Thank you again SO much to everyone who has been so supportive. When my mom posted updates to my facebook and saw that I had over 60 "likes" it made me smile LOL. It made me smile because 60 people care enough to "like" that my surgery went well. To those 60 and so many more than aren't on facebook, thank you. This battle is not over, but you all have helped move me further through it. Blessings and much love to you all.

The best has yet to come.