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.