Body Betrayed | Body Disabled

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Tuesday, February 23, 2016

Home from My Thirteenth Hospitalization

February 23, 2016

You may have watched my YouTube video 2016-02-10 Pre Appointment Summary. Here is the follow-up after my hospitalization. I will do another post treatment comparison video soon.

It has been a long seven days at Vanderbilt Medical Center, but most of it was a blur to me. I feel fairly confident if I had not increased the prednisone and Mestinon on Friday before my doctor's appointment on Tuesday and admission immediately after, I would have been intubated. When the neuro doctor evaluated me, my single breath count was down to sixteen. The neurologist asked, "Do you have an Advance Directive? Are you okay with intubation if necessary?" Those questions do not rattle Cathy or me; we dealt with them for years in ministry and in my current situation. "Yes, intubate me if it is part of the treatment, but not if I am brain dead or have a massive heart attack and no hope for a good quality of life, etc." The doctor agreed and hoped that intubation would not be necessary, but they would put me in the Neuro ICU step-down unit where I would be monitored closely. I was hooked up to wires all week. I had waited too late to go to the hospital and was at the point of a MG crisis. My fault.

Since I was admitted to the hospital so late, they were unable to insert the vascular catheter until early the next morning. Because my breathing was so bad--my respiration rate was between twenty-five to thirty-five on average and shallow--they only used a local anesthetic to insert the catheter.

I finally made it to plasma exchange around 4:00 PM. For those not familiar with plasma exchange (PLEX), my blood is circulated through a machine which separates my blood cells from the plasma (liquid). The liquid is replaced with new liquid (albumin) and recombined with my blood cells and pumped back into my body. It is sort of like a transfusion with my own blood. The old blood plasma which contains the bad antibodies that causes my problem is trashed. This first PLEX circulated 150% (6.5 liters) of my body's blood through the machine. I made it back to the room about 8:00 PM.

They took me for my second PLEX about 7:00 AM the next morning. It was another 150% PLEX. That made a total of 300% (13 liters) of my blood in and out of my body by the time I returned to my room around lunch: two large exchanges in eighteen hours. By now, I was running a slight fever and my heart rate had increased. My nurse came in to check on me when I returned and I asked for some nausea medication. As soon as I did, I started throwing up. I throw up with all my might! The nurse immediately got and gave me an injection of IV fenegan into my IV port. The doctor commented on it the next day, "the nurse said, 'you threw up your foot!'" Yep! I think I may hold the record for throwing up on that floor. I took zofran from that point forward. I mentioned my heart rate. My usual resting heart rate is between 55 and 60. After the first two treatments it went to and average of 100-125; higher when I stood. This is normal for me during PLEX. My blood pressure also went between high and low at its pleasure.

The other PLEX treatments were only at 100%. In all, they transferred twenty-six liters of blood in and out of my body. My symptoms remained the same, except for throwing up. I did have a treatment day off on Sunday.

When the doctors examined me before and after the first PLEX, I had considerable weakness. I and a big, strong man, so weakness is a relative term when a 125 pound female doctor is testing my strength. But, when I was laying flat in bed and could not raise either foot off the bed at all, well, weakness becomes very evident. I could wiggle my feet and move them side-to-side, but I could not raise my leg off the bed. It was like I was paralyzed. The lead doctor asked, "Are you even trying." "As hard as I can." The next morning, after the second PLEX mention above, I could lift my legs with ease. The doctors and I were amazed. Thank the Lord. They said, "This is why we hit you so hard and so heavy when you came in. You needed some improvement fast." It worked. My strength continued to improve and I could even take a step or two on my heels by the end of the week. I am still not back to my "normal" strength.

After my PLEX treatment on Monday, I started the first of four Cytoxan chemotherapy treatments. I will have three more monthly treatments in Chattanooga. It took a little over three hours for the first chemotherapy. The doctors finally pulled the vascular catheter and began the discharge process. We finally left around 5:00 PM.

I tolerate Cytoxan fairly well. I will have some nausea for a few days, but I am prepared for that. It also causes my heart rate to increase. Last night at bedtime, my resting heart rate was 120. It should drop back to normal in a few days. I will avoid crowds until the chemotherapy is over.

I had really good care from the doctors, the dialysis unit, and my nurses and Cathy and I appreciate it very much.

Oh yeah! Most of the time, the food at Vanderbilt is not bad. This time it was awful. They did provide Cathy a guest tray and I am thankful; I had a partner in culinary despair. Someone in the dietary department must be getting a kickback from the green bean and carrot producers. We had green beans or diced carrots at every meal: both at many. I like green beans and carrots, but there are only so many one can eat.

And another thing. I have an egg white allergy: I get delayed sinus congestion. I eat eggs at home so the doctors said I can eat eggs there--but tell that to the kitchen. Try eating a week of food that has NO eggs or egg substitute products (they use ground cardboard instead). They made a mistake the first morning and brought me a "Vanderbilt Special" breakfast of bacon, scrambled eggs, potatoes and it was the best meal I had there. They rectified their mistake. The next morning I received a "box" breakfast that was clearly marked on a bright yellow labeled "BUNN -- ALLERGY. NO EGG." It contained an over-the-counter muffin, cranberry juice, apple sauce, and - - - wait for it - - - a boiled egg.

When we left Vanderbilt last evening, we stopped at Carrabba's for supper. We arrived home around 10:00 PM and were exhausted. Thank the Lord for taking care of us and that I am feeling better.

PS: Cathy snuck me a pizza on Friday night.

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