Thymectomy Part 3: Recovery

The worst part of recovery was changing the bandages. I have sensitivity to tape and prednisone causes thin skin and to top it all off  my bandages were in awkward areas under my breast and lower armpit area. So yes it tore my skin and causing this to be more complicated that it already was after a hard surgery and of course it was still tender.

What I was not ready for was the nerve pain and the nerve damage though I was warned about the nerve damage and possible loss o sensation. I could have dealt with a bit more of this with all the bandage changing. However, the nerve pain was almost unbearable at first. It would be sharp shooting pains and it felt worse than knives cutting into my skins. I was then put on 300mg of Gabapentin 3 times a day. I was unaware this was going to make me sleepy. And yet I was still driving but had no idea why I felt a bit off. My doctor was shocked I had made it to the follow up appointment with that dosage. However, Since I was healing well and I do not like to be on an medication long and they were taking the stitches out about 10 days later I asked to be taken of the Gabapentin since my family make-up has a history of addiction. I also called my neurologist and asked her opinion. My neurologist was very irritated that I was placed on such a high dosage and immediately tapered me down before the hospital doctor could even respond. Every time they mess with my meds my Neurologist are like:

stop it season 9 GIF
But then the absolute worst for me was the first time I saw it and felt t myself with gloves and how butchered I felt. The holes literally holes in my skin that took months to heal. I literally had to stick my finger just inside one of them daily to pack it with gauze and each day I broke down just a bit. I know it is never as bad as it seems and I am not vain it was just the shock. I just broke down. I thought that was the end of it all though once I healed physically. that’s it.

project runway check GIF by Lifetime Telly
Or so I thought

But then started new pains like the numbness that has still not gone away a year later in some parts of my armpit and upper back. And the mental anguish that came with the fact that my MG is resistant to a thymectomy and quite aggressive and requires something more that such a surgery since I never had a thymoma and I was just reaching for anything since at the time they had nothing else. I went through such a process for nothing it seems.

Unfortunately it also seems they wouldn’t let me go through to the phases I get to go through now unless I had a thymectomy to prove how resistant my MG is. That is both a shame and a gift to be one the other side. I just pray that in the future others do not have to go so far if they don’t have a thymoma and they can see beforehand that if they are already so resistant that perhaps just trying the noninvasive treatments first may help. I was going to try Rituximab but in the year since we talked about it an even newer medication with nearly no side effects and less time from work has come out and better results.

I will be doing Eculizumab in the near year. Look for my next post to talk about the benefits of both.

A brighter Future

bright sun GIF

Easter in November

I finally did it. I finally have a date for my thymectomy set in NOV.  In 2.5 months I will be doing something that nearly terrified me to hear when I was first diagnosed back in October 2013. I thought since I did not have a thymoma there was no need and that they should try all non-invasive methods first. I mean I had just been diagnosed for Pete’s sake. I had barely even been on any medication and had hardly felt informed enough to make an informed decision at that time.

Fast forward 2.5 years.

I barely heard more talk about a thymectomy until I brought up the subject of children. Then It was on the table again. I then had to wait what seemed like an immensely long time on a waiting list to see a specialist  neurologist in Myasthenia Gravis just to talk about how I could safely bare children with this disorder.

That wait took 8 months. August 2016.That’s when the thymectomy came back on the table.

I was all for it this time because I had been through nearly every treatment they had for MG now. They had told me what would and would not work for me over the last 3 years and what I was a candidate for and so forth. The doctors all knew me and has seen me countless times and knew, just as I did what my body could handle. My meds had been adjusted numerous times and after being on a cocktail that seem to keep me stable along with maintenance plasma exchange I still am only getting by.

The doctors believe that this surgery could definitely improve my quality of life and they have successfully performed it many times using the Davinci robot. I am both excited and nervous.

Having gone through a divorce recently I had already decided before that divorce that I still wanted children even if it was not with that man. I wanted them in the future even if I had to be artificially inseminated, ask a friend, find a new relationship, or even adopt. But my goal and hope was to try and have one of my own.

Going into this surgery, I am doing it completely for my own quality of life! However, we all need some additional positive things to hold on to going into life changing moments…Sometimes it’s the idea that a loved one/ family is waiting for you when you come out of the surgery, an event (like a wedding is coming up), or that you need them. Whatever the reason you hold on to those moments because it makes you feel safe, calmer, distracted, and gives you a reason to fight is somethings dare I say goes wrong.

I call those moments Easter eggs because they are the happy moments you plan or want to get back to in life. It’s like knowing on Thursday knowing you are going to your favorite restaurant with your best friend whom you haven’t seen in months due to your schedule for lunch. On Monday no matter how crappy the week you look forward to your little hidden gem because it may be buried under leads of stress, negativity, traffic, paperwork, bosses yelling, babies crying, missed flights, and marital spats, but that is a breath of fresh air in the midst of your week.

I am looking for a few Easter eggs right now for my surgery. I feel like I need more than one.

Oh MG

I have had a bit of a set back with my MG lately but only to have it go bumbling along again at its usual humdrum do as it wants pace. I feel i am rather in control of my MG; however, at times it likes to have a say sometimes and boy can it get mouthy.

Yesterday, i had to get a temporary catheter for treatments untul i get my subcutaneous souble vortex top of the line limo of ports next week. It wont be ready to use for about two weeks due to hiw tender it will be. But in the meantime i needed treatment a tad early due to some good and bad stress. So iff i go to get the temp and oh what a journey.

I told them i mus. be at work at noon on the same day. They said okay its a temp so its possible. Then i get there and they start and say we will use local anaesthesia…code for lidocaine injections ONLY…i did not realize this. What the heck was all the hubub about needing a driver. I could have driven myself after. I though i would have been given a mild sedative or something stronger than that but nope. No anaesthesia. They said i did better than some patients with anaesthesia and i just stared at him blankly with tears free flowing and shaking like a Chihuahua.

They kept asking if i was cold and i was like no…i was scared, you triggered my anginiphobia and im probably in shock. 

But to know that i will have the new port and start the process for my thymectomy soon fills me with a nervous excitment.

The Almost Cure: Nervous Excitement

So I got my results back from my single fiber EMG. Remember this is the test for MG patients that they put the needle in the muscle belly of the arms and forehead and give little electrical shocks to see how the muscle recovers essentially. Well Yes, it was just as I remembered. It hurt like all get out. I was not a happy camper but it was a necessary evil. Though I was given the option to tell the conductor to stop at any time I ignored that option as I wanted desperately to endure it so that he could get all the information he could. I figured if I did not tell him to stop over 2.5 years ago when I was in crisis mode I dang sure could deal with it now when I was much stronger. But when he lit up my forehead where there is not much muscle I swear I wanted to scream stop many times. I may be strong but I am not superwoman…I am not impervious to pain.

Anyways,

I get to the hospital after a 25 min trip took an hour. I go to check-in and they say my appointment is not at the hospital but at his clinic and I’m confused. I thought the place was one in the same. They politiely give me the address and say it is not far from there and it was only about 7 minutes away but in traffic took me 15. I called ahead and told them I was running late and that I had only EVER met this specialist at the hospital and had no idea he had a clinical office at another location and they understood and said they would wait as long as I got there before his 9am client. So I sped like a bat out of HELL. I got there at 8:35 and by the time they called me back and started my vitals I heard the call in his 9 am. So I figured I was good. NOT. They kept doing small tasks and having nurses come in and talk to me and some associate from a the muscle dystrophy association talk to me then another doctor but that all happened in the first hour. I then waited 2.5 more hours before I saw MY doctor. I was pretty annoyed by this time. I mean if it weren;t for the fact there are only 2 other specialists like him in the country and they are few and far between and I waited 9 months for this appointment, I would have left.

But I did not show any of this once he walked in, ONLY relief that he gave me his full time and effort, I am no fool. I need answers and his knowledge and I cannot afford to be ignorant something that is life changing for me.

The Results are in:

My arms have gotten considerably stronger in the last 2.5 years, but my forehead and eye areas weaker which from what I had already told him were consistent. Moreover, my hip flexors are strong but have gotten a bit weak but that was from a simple test from week to week not the single fiber test. I also have developed strider again (a respiratory issue). But what that means for me in terms of someone who wants to be more fit and has gained weight, wants to have a child, and wants to come off some if not all of my medications.

Right now he says the tests says my MG is too active. To have a child would mean potential death for me as well as if they took me off my medications right now. I am just not strong enough for any of that. I cannot go back to ‘normal’ yet. But he created 2 plans to help get me better so that I can have a child and be strong and come off the medications.

  1. First is to increase my cell cept from 1000 mg daily to 2000 because apparently for nearly 3 years I have been on a puny dose and it’s not enough.
  2. Then is to get a subcutaneous port. This is so I can receive my PLEX (plasma exchange treatments) easier because I will need to be plexed extensively over a 2 week period before getting step 3.
  3. Thymectomy- I will get worse before getting better for about 2-4 months (a bit weaker but I will be able to receive plex during this time as well)
  4. During all this time I will begin rituximab which will begin to replace cell cept and it is a med I can take even if/ when I get pregnant. But I need to be off cell cept 3-6 months before I am allowed to be pregnant.
  5. Get pregnant

The other process the doctor laid out had me doing the same process except based on my answers of wanting a child I would get pregnant first and then do the thymectomy further down the road (flipping steps 3 & 5 Basically. I said no prefer to do plan ‘a’ as he called it because it allows me a chance to be stronger first and to hold and care for my baby with less trouble.

 

I also learned something more about MG and pregnancy I never knew…If you have been pregnant before, even if you did not carry to term you are more likely to have more weakness and crisis at some point during the pregnancy and likely post-partum than first time pregnant women.

There is also the rule of thirds with pregnancy:

1/3 will have no change in symptoms/ weakness

1/3 will have increases symptoms/ weakness

1/3 will have decreased symptoms/ weakness

 

With the thymectomy I help cut this down greatly! So right now I definitely see no reason not to do this besides just being nervous about surgeries in general, and surgery from the standpoint of anesthesia and MG patients. I am definitely excited to have less symptoms that’s for sure and to be able to get treatments that are quicker and less painful. I am all for it. I can see why God has post-poned some things for me now. He had a plan that involved some serious flexibility not every place offers that or understands.

Quality of Life and MG: Research States Younger Symptomatic Women Suffer More…DERH

qol

SO there are always surveys and research studies that are conducted for all kinds of things from your favorite color to how well you cope with the your chronic illness. This can be done on an individual level to how well people do on a whole or in a group. This can also be compared across a group from a bunch of individuals. Several research studies have been conducted on individuals with Myasthenia Gravis and their quality of life according to the Myasthenia Gravis- Pipeline Insights and well as the my author listed below. Their findings are similar. Stating that Younger more symptomatic women are at a higher risk for a lower quality of life. We are less likely to be happy, because we are in more pain (emotionally or physically, have more bills and concerns, and so on. That is a big 10-4.

It was gender specific stating that it was the women more so than the men, that had not had a thymectomy, who were not in remission, or only had ocular myasthenia (which means they have more than just eye related MG). I would say that would make anyone down so I am not sure why it only affects women more than men. Especially since more men have it and generally men over 60. I think maybe it as to do with the fact that when it hits women (generally around 30, we have our WHOLE lives ahead of us. It’s a really hard blow. We still have a lot of things to accomplish or do, you may not have children yet, or have gotten married, or found that professional level at your job and now you have to try to do it with a disability. Where as at 60 you are mid-stride or beginning to slow down in those areas.

I am a super cheery person but I did go through a dark patch for a while with these things as well. I still hit some moments of quiet meditation to pull myself up by the bootstraps and keep pushing forward. It’s a lot to deal with. However, I ave some of the best people and support around me and many GRAND distractions, LOL. I also love living the life I have. I have too many things to be thankful for and I know that there will too many good things to come to be unhappy for long. Something will always be around the corner to make me smile or laugh so I can never stay down too long. So even when I want to be down it never works. I just found these studies interesting because though they are not me, I can see how it could be anyone!!!

These studies are definitely me at times, I’m sure they are anyone with a chronic illness at times. I also believe that these studies are also needed because maybe they will find more outlets and programs for support groups and therapies for people with disorders and diseases. Many of us with these disorders, especially when we first are diagnosed feel confused, angry, and alone. We need to know that someone has this and that they felt this way and it is a normal feeling. We also need to know that researchers see this and hope they are going to do something about it!

From the website

Author: M. BoldinghL. DekkerA. ManiaolC. BrunborgA. LipkaE. NiksJ. VerschuurenC. Tallaksen
Credits/Source: Health and Quality of Life Outcomes 2015, 13:115

Myasthenia Gravis- Pipeline Insights