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This post will be about my recent month long hospital stay and I would like to say thank you for all of the encouraging posts and the many cards, the top secret Aussie meds that were sent along with the many phone calls and well wishes. They were all very much appreciated and really did help brighten my days. As soon as I was able, I did keep up on the sites posts but have not been able to type until the last week or so.
For any new members, don't worry, the issue I am dealing with has nothing to do with MC (LC or CC) While I do deal with collagenous colitis and Crohn's, what happened last month was result of a autoimmune condition called Myasthenia Gravis (MG). In MG the body loses its ability to command any one of the many voluntary muscle groups including breathing, walking chewing etc... Since I was sedated for 13 days, I lost a lot of muscle mass (66%) and also quite literally forgot how to walk.
Sorry if this is a long note...but to be honest I need to air this topic out some, its been a pretty intense 5 weeks. I did include some photos of both myself and of course nurse Nestle who was allowed to spend time with me once I was out of the ICU. I am going to put the few photos of my ICU time into a separate folder which can be found at:
Link to where the photos are at:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=20092
The reason they are in the separate folder is that some might not like the nature of the photos as they are inn a critical care setting. There is no blood or anything like that. My son & daughter took some photos as there was a modest concern that I may not come out of this event.
Overall its been one heck of an experience the past 5 weeks and I just wanted to take a moment to first extend a very sincere thank you for all of the cards and encouraging posts and extend a big thanks to Gabes and Polly for tracking down the information and keeping everyone up to date. The last thing I remember was that I was going in for a operation to clean out the cyst and then 14 days later I woke up enough to realize I could not walk or use my hands and arms, fortunately that proved to be mostly a temporary issue.
What in the world happened: As many of you know besides MC (CC) & Crohn's I deal with neuromuscular condition called Myasthenia Gravis (MG) which is a condition which can shut down your muscles including as I recently found out, your ability to breathe.
On June 3rd I had a "breathing crisis" where while at home could not breathe as the diaphragm muscles had weakened enough so I had to go to the ER where my oxygen saturation levels were only in the upper 70's resulting in a pretty quick response by the cardiac and neurology teams.....the rest is basically a blur. Within just a few minuted they had me in a hospital gown 3 IV lines started and an O2 mask on which felt great to be able to breathe so it was off for a CT scan
After the CT scan they found a large, about 8 to 9 inch long cyst (filled with staph & strep) behind my throat up against the spine which apparently when they get that big warrants immediate surgery. So begins the fun.
That surgery which lasted about 3 hours, kicked off a storm of rapid blood clotting which resulted in a second and third surgery over the next 22 hours to remove the IV central line port I had surgically implanted last October to get the MG meds. At the same time I had a large medicated stent placed in the main artery feeding the top of the heart (into the SVC) not to correct any cholesterol issues but to protect the artery from the thumb sized clots that were forming closing down that artery. I was put on the clot busting drug TPA for 3 days (not sure) days which fortunately I tolerated OK as it has a a potential risk of stroke as it can induce a brain bleed.
Now as the main issue was a MG breathing crisis going in, this complicated my recovery as I ended up on unconscious on a respirator and in the ICU for 14 days. Good thing I was unconscious and remember little of that. During that time my breathing had basically shut down as my diaphragm was too weak to do its job and they were letting the respirator do the work to buy time for my body to recover some strength and they were filling me full of steroids to help calm the autoimmune reaction. Apparently my bloodwork showed fairly high level antibodies which prednisone or solumedrol help quickly suppress the immune reaction. Its a good thing that they were able to get me off of the vent at 14 days as within a day or so more I would have had a tracheotomy with a breathing tube inserted below my voice box...yuck I am glad I was able to avoid that bit of 'fun'
On day 11 the doctor told the family members that were in the ICU waiting area that if anyone might want need to travel to see me that they may want to consider making plans. Basically they were not confident that I would make it. I am so glad i was asleep for all of that
After the 2 weeks in ICU I was moved to the critical care recovery unit where my kids had arranged to bring my real nurse in to take charge of my care, of course I am talking about "Nurse Nestle" She would not leave my side for anything and stayed right in bed with me for almost 3 hours. As far as I'm concerned that was hands down the medicine of all. I was still pretty medicated but remember Nestle by my side, what a moral booster that was.
Recovery
I spent 7 days in a post surgical recovery ward and found out awfully quick just how much being immobile for 2 weeks dramatically affects the body. The statistics show that on average for each day in ICU that the body looses about 12% of its muscle tone and strength each day that you are unconscious and immobile. There is also a fairly high chance that you suffer some level of cognitive dysfunction when you are sedated for that length of time.
Fortunately for me I am quite fortunate in that I have very little cognitive functional damage which is already clearing up, but I have lost a lot of muscle strength and mass.
Learning how to walk again:
I never fully understood what that meant, how can you need to learn to walk again, I soon found out thats exactly what happens. My first day in the surgical recovery ward I could not take a step without 2 people holding me up. Additionally both my hands were all curled up and I could not feed myself.
Healing at Home
I was able to come home on July 3rd exactly 30 days after I was admitted from the ER. In order to regain full use of my legs, hands & arms I go on a outpatient basis 3 times a week for 1 hour per session with a really good physical therapist. I also have 3 one hour sessions for the cognitive exercises which is helping my mind to clear up and as I was in respiratory failure when I came to the ER I most likely am dealing with some temporary hypoxia induced brain injury that fortunately seems to be getting better every day.
At this point my recovery is really up to me staying committed to the outpatient rehabilitation and continuing to work hard to strengthen my muscles.
Now the hospital did try to provide a pretty good GF, DF and SF menu and they even had their nutritionist come up to go over each days menu to find the best combination for MC safe foods. Even with all of those precautions my GI system was in a uproar, even the narcotic pain meds did not help much, but the hospitalist did allow me to take up to 4 Imodium tablets a day which did make the stay there a bit more tolerable. Now that I am home my GI tract is settling down.
Thanks again to all here for your cards, prayers and wonderful posts, they really meant the world to me.
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