One Year of Healing
 

So, today is the one year anniversary of my thymectomy. Strangely enough, my thymectomy was done on the day after my 40th birthday so I can say in all sincerity, 40 sucked ;). 41 will be better.

In this year I have:
1. Had my sternum split from shaft to stem and was opened up like an oyster.
2. Had that heal and built my stamina up to the point that I could successfully walk 3 miles (5 km) per day without any significant effort. This started with a walk of merely 500ft up the street and back; I gradually over two months got it to the point where some days I went out and walked 6 miles which was a bit more effort, but still very doable. Before the surgery I was unable to walk this far.
3. Was put on Mestinon
4. Went through radiation therapy which took all of that built up stamina and squashed it to the ground.
5. Slowly built my stamina back up to the point where I could walk 5 km again.
6. Caught a serious pneumonia which put my walking on the shelf
7. Went through a MG crisis where I was not taking sufficient oxygen into my body and was hospitalized for 4 weeks - this happened on the eve of returning to work and set that back for another 7 months.
8. Had my mestinon prescription increased
9. Caught a case of antibiotic resistant bacteria into my lungs (MRSA)
10. Went through 5 straight days of plasma exchange
11. Developed 3 more cases of pneumonia as I tried to recover - antibiotics took care of these.
12. Spent most of a year coughing and hacking; fighting for air.
13. Went through 8 rounds of antibiotics
14. Was put on antidepresants (I was seriously feeling sorry for myself and was not being a good husband nor father.)
15. Fought off the MRSA (This took two rounds through a research program - a local doctor is trying to determine if a particularly harsh antibiotic which MRSA is not resistant to will result in better long term elimination of the MRSA in patients.)
16. Went through a dozen visits to hospital while on the plague list (they treat you very differently if you have been exposed to MRSA and have not been declared "clean" than otherwise.)
17. Started physio therapy (quite a change for someone who has been a couch potatoe for 40 years.)
18. Rebuilt my stamina to the point where I can again do the 5 km.
19. Started into weight lifting to build up my muscle mass and stamina.
20. Drove my wife crazy.
21. Returned to work.

The pysio therapy has been great for me. I've said many times on these boards, my MG is a very mild case: seriously affecting only the left side of my face and throat. Very mildly affecting my larger muscle groups (legs, arms etc.). Since my thymectomy my ptosis is completely gone whether or not I get my mestinon on schedule. My speech is much improved - I only get marble mouth when I've had too much to drink nowadays. My swallowing is also much improved; although I still need my mestinon for fully comfortable swallowing. Hot foods still bother me (which sucks as both me and my wife LOVE thai food.)

I have always been (well, for 35 years now) a couch potatoe. Before I got sick, I was at 230 lbs and physically inactive. The difficulties swallowing quickly eroded the weight - but I was glad to have it to survive what I had in front of me. As I went through my various treatments and crisis I was down to the lowest weight I'd been since I was in grade 8... down to 110 lbs. I've fought to regain some weight, focusing on regaining muscle mass for the most part and am currently back up to 117.

Thanks to the great physio therapist here, I'm able to walk several miles in a session and lift and carry a significant weight again. My three day a week work out is now 1 mile warmup, 20 reps each of chest press, shoulder press, leg lift, balance improvement exercises, bench presses, leg presses, rowing, 5 minutes on the eliptical trainer and forearm conditioning. I have gradually over the past 4 weeks increased the weights from minimal 12 lbs to 50 lbs on the arms, chest and rowing exercises; 40lbs to 120lbs on the leg presses. I have also returned to swimming which I have always enjoyed but not been able to do because of the thymectomy and recovery. It has been several years since I've swam, but picking it up again has been fun (if a little frustrating because I'm in such lousy swimming shape).

I am now on a gradual return to work after having been out for a year (with a 2 week return between my surgery and my radiation therapy). The exercise program I have begun has been very good for me and I will continue to follow it and gradually increase the various items that I do with my exercise. In the future, I plan to move from walking the 5 k to running it and am confident I will be able to do so one step at a time.

In a year I've gone from being basically unable to eat (taking in less than 300 cal per day) and having great difficulty speaking or even really walking a great distance to being the fittest I've been in my life and almost to remission from this debilitating disease. I'm an exception as my MG is very mild, however, I hope this gives some of you some hope to what you can achieve in fighting this disease. Take it one day at a time and listen to your body. If you are able, walk just a little further each day.

Best wishes to all.

Fantastic for you Brennan ! What an achievement, sounds like you work very hard at keeping yourself healthy now , & it is paying off !
Good to meet you,
Mary

Here's to 41! Hope that it is your best year yet. You have been through a lot. Take care.

Brian, It's great that you have "survived" all that and have a great attitude. It stinks that you had to have so much to survive though.

My Dad had MRSA too. They took the appropriate precautions for him too and we all had to have gowns and masks and gloves.

I wish I could afford the physio/back to health program they have here. My stupid insurance won't pay for it. It's great that you are rebuilding your muscle strength slowly. It really helps. Those rubber band things you can use at home help too.

I hope you feel really proud of yourself for having gone through so much and coming out the other side of it relatively okay. Just take it easy!! You don't want to get worse now that you've gotten better. ;)

Annie

Cheers!
 

Happy Birthday!
 

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Here, here to 40 stinks. I went down HARD for the first time 18 days before my 40th birthday. I got a coffee cup that says "Finally 40" on one side and "I'm so happy I could puke" on the other for my birthday!

You have much to be thankful for and proud of! You obviously have a lot of love of family, common sense in taking care of yourself, and determination to not let this disease win! I truely believe that the positive attitude has so much to do with it, and they actually have some science that backs that up! Have you ever read the book "The Field" by Lynne McTaggart? It's really inspirational, although a little hard to wrap the brain around at times.

Hope you had a wonderful 41st birthday!

Becky

Congratulations!
 

Congrats Brian, and thanks so much for sharing your wonderful journey with us!

Its been an amazing one year for you, and am sure that with your positive attitude, you'll conquer anything! Cheers to 41!

Wow
 

My hat is off to your tenacity and perserverance. My BIG question is - how did you still have a job at the end of the this. In April I went into a Myasthenic Crisis - went to ICU. Now I'm on outpatient IVIG and still too weak to return to work. I work for a small company and therefore don't have FMLA protection. Even though I've only been out for a couple of weeks, I sense that my job is in jeopardy. I am a single person and have no fall back support. If I lose my job, I lose my income and my insurance. Any tips? How did you do it?

how did you still have a job at the end of this?
 

Simple answer: I live in Canada. By law, if you go out on disability, they have to retain a position for you when you are able to return. It does not have to be the same position you were working before you went out, but employers are required to take you back when you are able.

I understand there are similar laws in the US but they are not enforced equally across states. I think you'll need to look into the Americans with disabilities act and how it is handled where you are to see how safe you will be.

I also have a great employer who treated me right through the whole process. They know my work ethic and were very happy to have me back as soon as I was able; they are treating me very well with the graduated return to work. Of course, where I was on short and then long term disability they are not paying my salary, the insurance company was and is so my time away was not difficult for them except for finding someone to pick up the load while I was out.

Brian.

What a story Brennan. Amazing what you have been through. I had my thymectomy last Aug., 4 days before my 41st bday. That's incredible, the amount of weight you lost.