For those who are not family and friends, My dad has been very ill.
Right about the same time my mom and I decided to start this blog, my dad was diagnosed with Myasthenia Gravis (MG). For those unfamiliar with the disease, your own immune system attacks your voluntary muscles and you lose control of them. This can affect your limbs, your eyes, even your breathing. Though my dad showed symptoms of all of these, his particular problem was his mouth functions.
He couldn't chew. He couldn't talk. He couldn't swallow.
It doesn't seem like a big deal, but he couldn't for months. He lost 70 lbs. He had made serious plans to lose weight just before all of this happened, but he played Santa for churches, so he had been reluctant to really start. That and with working in a very important financial position for a fortune 500 company, he had little time. I tease him that if he wanted time and weight loss, this was the wrong way to do it.
We went through 12 doctors to find his diagnosis. We ruled out possibilities of sinus surgery complications, infection, allergic reaction, pancreatic cancer, and a dozen other scary diagnoses. We were frustrated and scared. Then came the answer, and that didn't change.
Part of the treatment for MG is IVIG (intravenous immunoglobulin) and chemotherapy to stop the immune system from attacking your body. We had been told that this was going to improve his outlook so much, we were excited even if it was a week of visiting the cancer wing of the hospital and months of Imuran.
About a week after the treatment and starting chemo, my dad awoke with chest pains. My mom and sister had been shopping, and he waited patiently for them to get home. My dad hates hospitals. He has to be almost completely incapacitated to get him to one. So, when he told my mom that he thought he needed to go to the ER, even though this was a possible side effect of the Imuran, my mother swept him out the door. Still, it was very calm. Mom didn't even speed to the hospital, and Dad was still doing work from his Blackberry.
They were there for hours. A parade of family members (of which, we have MANY) went to see them and bring them food. Nurses were in and out constantly. Then, they gave him aspirin....then, nitroglycerin. My mom knew. She took his Blackberry from him. Then there were three nurses in there constantly....not good.
Heart attacks are frightening and serious in normal conditions. We had only just begun to learn about MG, but were aware of the challenge we suddenly faced. The major problem with MG is there is a list a mile long of medications you CANNOT take (for risk of death and MG complications type of CANNOT take). Most of which are drugs that are normally prescribed after heart attacks, almost all anesthesia for surgeries, antibiotics, numerous heart medications, and the list goes on and on. What was really daunting was we were having to educate the doctors and nurses we were dealing with. Most of them were completely clueless (and thus dangerous) when it came to the disease. I have read and regurgitated more Latin and medical verbiage than I ever cared to, and my mother has had to do three times what little I have done.
In the end, we learned that not only should he not have lived through the heart attack which included severe blockages, one of which was dubbed "the widow maker" just for good humor I am sure, but it would be a miracle if he lived through the quadruple bypass surgery that was required.
It's a good thing God does not have a quota on miracles.
My family reaps the benefit of them all the time, and this time was no different.
The meeting after the surgery was not at all what I expected. The doctor told us about "roadblocks" my dad's body put up and the surgery was a "struggle." He also told us about how my dad's tissues were "friable" (which in my opinion is the worst medical terminology ever used in history) and likened it to that of an 89 year old woman's. We were shocked. We had tried to prepare ourselves and ready questions, but suddenly no one even knew what to ask.
The weeks that followed were horrible. He spent 29 of the next 35 days in the hospital. It seemed sometimes he would come home and not 24 hours later, he would be right back out. Again, he couldn't eat. The MG was overwhelming and moved to his breathing, putting him in what is called MG crisis. They discussed putting in a peg to feed him, but with the report of the "friable tissue" that seemed the worst idea to us. We kept receiving vague and ambiguous answers and test result and scary mentions of issues in the Pancreas and with MRSA. It was a revolving door of issues and treatments and speculation and doctors without needed knowledge. We struggled and prayed. We saw specialists upon specialists. He was given another IVIG. More Imuran. More this, more that. I watched a strong, silent man, fight very openly. Eventually, he was able to come home. We created daily charts of medication (he was taking 31 doses of various medications per day) and pertinent information (weight, blood pressure, etc.) to help in his treatment and to take to the doctor's office. We actually became excited when we had accumulated 7 of them in a row.
Since then, it has been a very long road. We just celebrated My dad's birthday. Something that mere weeks ago, we weren't sure we would be able to do. I am so grateful and overwhelmed that he is still here. Nona took photos of the two of them on Broad Street in the ginkgo trees. In all of them, my mom is clinging to my dad like the physical embodiment of what she had just done for the past few months.
We tried to relay to all of those who were charged with his medical care just how special this man was to so many people. Usually it ended up being a jest about him being Santa and they wouldn't want to end up on the naughty list. But truly, it was amazing to see just how many people truly loved my dad and in just how many ways he was wonderful to everyone. I knew it already, but to have it reaffirmed from people that didn't have to give us the time of day, was a blessing.
My dad recently went to his office to give laptops and such back so they would have access to what they needed from him. Of all of the things, most of his co-workers were all afraid that they would have to see him without his Santa beard.
My mom has put our entire ordeal best. One of dad's co-workers asked what she has been doing all this time. She replied, "Hanging on to him for dear life!"
And we will continue to do so. Please keep us in your prayers and hopefully soon we will be back full swing!
Happy Birthday , Daddy-O! Keep Hanging On Momma. We'll make it.
Photo by Nona Henderson, Sweet Nothings Photography
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