Showing posts with label Myasthenia Gravis. Show all posts
Showing posts with label Myasthenia Gravis. Show all posts

Tuesday, July 24, 2018

HOORAY for Nicotine!

Not. Joking.

While the demon known as Myasthenia Gravis has been trying to suck the quality of life out of my Dad, we found something that is able to subdue it: Nicotine. Specifically the Nicotine patch.

Crazy right? Especially since my Dad stopped smoking, cold turkey, 40-some years ago.

Seventeen days ago my Dad could barely talk, breathe and had the negligible energy to walk between the bathroom and his recliner.

Seventeen days ago, from a suggestion they received from someone with an autoimmune disease also, my stepmom bought a store brand box of Nicotine patches, of the lowest dose, and stuck one on my Dad.

Unbelievably, and thankfully, it is working!

People trying to quit smoking typically start Nicotine therapy at the highest dose and gradually step down until they, hopefully, give up smoking for good. My Dad started at the lowest dose and has since moved up to the next higher dose and the improvement in him is, dare I say, miraculous?

Until the past few days, my Dad had not driven a vehicle or tractor in more than a year and his tool belt has hung, neglected, on the hook inside his workshop. Since wearing the Nicotine patch, not only has he been able to drive, two days ago he also tore down the engine in a go-kart, identified the problem, and FIXED it.

How this is working:

Myasthenia Gravis is attacking my Dad's immune system, causing a disconnect between impulses between thinking about doing something, "I want to lift my hand", and doing, which is, lift my hand. The Nicotine patch is giving the life-sucking creatures something else to devour instead. Kind of like Pac-Man.

So, YES, in this case, NICOTINE IS A BADASS (in a GOOD way)!

Tuesday, July 17, 2018

Seventeen Days Ago

I wrote this post about my Dad seventeen days ago yet, for whatever reason, didn't publish it. Here it is now.

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This past Friday (July 6, 2018) I was able to spend some one-on-one time with my Dad while my stepmom was visiting the neighbors down the hill. It's the first time he and I have been alone together outside of a hospital setting and I was finally able to tell him that I, too, am having a hard time dealing with his illness.

I could feel tears burning behind my eyes as I said those words and it took everything in me to hold back the downpour as I told him, "Dad, I just can't imagine my life without you in it." As he dabbed at his own eyes ("they've been watering a lot lately" he mumbled) he reminded me that everyone dies sometime and that "this will probably kill me".

"I know, Dad, that's the natural order of things...still...unlike ALS, you won't die from this [myasthenia gravis], yet I'm watching it suck the life out of you." He went on to say that he "wants to see 80, then I'm good."

My Dad will be 78 years old in September. He has outlived his brother, two sisters, his mom and dad and his first-born son.

Watching my Dad lose his independence - it's hell and seeing him depend on others for things he used to do for himself is heartbreaking.

Monday, February 5, 2018

Muscles and Movement

I spent some time with my dad this past weekend and I am in pure disbelief at how quickly Myasthenia Gravis has grabbed hold of him. When I first found out about his diagnosis, and knowing nothing at all about it, I went to the internet to read up on it. The majority of the white papers and clinical studies I found indicated it was not a terminal disease.

I beg to differ.

Over the past seven months I have watched my 6'4" dad lose his ability to walk unassisted. His eyesight has reached a point where he is having to set aside one of his beloved hobbies: reading James Patterson novels. He has been unable to drive and has not driven a vehicle in more than a year.

This last weekend I noticed that while he is talking his face would become bright red. Bright crimson red. I found out that, because it takes so much of what energy he does have, his ability and effort to carry on a simple conversation uses all his strength.

While my dad was talking with me about the effect MG is having on his eyesight, my step mom, who was sitting off to the side where my dad could not see her, mouthed the word '♥' as she pointed to her own chest.

I am not quite sure what the meant by that gesture and I dont think I want to know.

Friday, September 29, 2017

Working Late

My usual working schedule is from 8:00 am to 4:30 pm. This past Thursday, I didn't leave my office until almost 5:00 pm, then took the elevator to the 1st floor in order to make a stop at my eye doctor's office to order contacts for me to try. When I left that office, instead of taking the elevator back to the floor I worked on and using the Skywalk to cross the street for the cafeteria and parking ramp, I decided a walk would do me good and set out on foot down to the pedestrian crossing. My plan was to pick up No-Bake cookies in the cafeteria, which is located across the street from my office, and in the direction I was headed.

Now, I have a habit of talking with patients as I pass by commenting on flowers they have in their hand, their pretty hat, saying hello or asking if I can help when they appear to be lost. Today would be no different, I thought to myself, the patient pick-up area was jammed up, and I continued on.
As I walked into the patient pick-up area, where the only entrance to the hospital is, I saw a patient, about 50 feet in front of me, in a wheelchair holding a pot of beautiful fall colored flowers. I was about to comment on the beautiful flowers when my eyes drifted to the patient's face and stopped me dead in my tracks. 

I could NOT believe what I was seeing. 

My heart was flooded with every emotion known to humans, yet I didn't know if I should be angry or concerned, happy or sad, and whether or not I should hug him. Thankfully, neither he nor the hospital staff person sitting next to him had looked my way.

I. Just. Stood. There.

The man sitting there was someone I have loved and looked up to all of my life; and someone who has loved me all of mine.

Within about 20 seconds, I had pulled myself together and walked toward him. Standing in front of him I said, with more sarcasm than intended, "So, I have to come to the hospital to see you?" 

Although he knew I worked at that hospital, there was no way I could have known he was there. For 11 days.

ELEVEN FUCKING DAYS.

For 11 days I had been passing through the hospital when arriving to work, during lunch, for Starbuck's coffee, and again at the end of the day. For ELEVEN days I had been passing through the building with no idea my dad was a patient there.

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The egg donor and vessel prior to my birth, has two sons and a second daughter that, like the egg donor, I will never acknowledge again as long as I live. The one son is in the medical arena like I am and, as my dad, his wife and I discovered, thinks HIPPA doesn't count for members of his immediate family, and should have been booted from his job when he looked into my dad's chart a few years ago.

I, on the other hand, take HIPPA VERY VERY seriously. Not only would it be an invasion of a patient's privacy, I WOULD BE FIRED from my job immediately upon discovery of the breech. In every medical assistant position I have held, I have come into contact with family and friends. If I am the person putting one of those types of patients into a room to take vital signs, go over medication lists and past histories, I go ONLY into places within the chart that I need in order to do the job at hand. If one of these types of patients request refills on medications, ask for lab results, etc., I ask a different medical assistant to fulfill the patient's requests.*

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Yet neither he nor his wife had bothered to let me know. Seriously?

SERIOUSLY!?

He didn't even address me in his usual way - and THAT hurt like a BITCH.

The hospital staff person sitting next to him said, "He has been my favorite patient!" Then I looked at him and said, "Well, he's not my favorite...

D A D

right now."

"Well..", he started, "I didn't think.." I cut him off, "I still love you, Dad, that won't ever change" and I bent over and kissed his cheek, noticing the infusion port that had been inserted into his neck.
I asked him why he was there and he told me it was for his fifth plasma exchange; he had already had four of them.

He told me he had been diagnosed this past July with Myasthenia Gravis and suddenly I couldn't breathe. The hospital staff person noticed his wife had pulled into the patient pick-up area and I turned my head to look. Even across the distance between us I could see her clenched jaw and the disgusted look on her face.

As I helped my dad into the car, I made a point - a very LOUD point - so she could hear my words clearly - that I have (and had) absolutely NO way of knowing he was in the hospital unless HE told me.** As much as I wanted to return the scowl and point those words directly at HER, I found that I couldn't even look at her. As the hurt began to rise inside of me, the woman I had loved and found guidance in over the years was now a stranger to me. She couldn't even bring herself to say hello.

I reminded my dad that I didn't live far from the hospital and that he should stop over. "Yeah, I'll do that", he said, in the tone of voice, that over the years I had learned was fake and hollow. I wanted to ask him if he would like to right now, but he reached out to close the car door before I could drag the words out of my head and onto my tongue. 

The conversation was over.

As his wife put the car into gear, I turned around and walked away. I couldn't watch them drive away because, before I had reached the entrance to the hospital, I was already crying. I sat down on the first chair I could find, turned away from all the hustle and bustle of patients, people and staff, and sobbed.
"Why would they do that to me?!" I asked myself over and over. "How could they NOT tell me?!" 
The pain was unbearable.

While were still waiting on the sidewalk for his wife to arrive I had reminded him that I have tried twice to see him this summer. "Yeah...well...we've been busy..."

"Apparently," I replied. Sounding just as hollow and fake as he did.

When they returned from their winter house, I had sent numerous texts to HIS phone about genealogy and such and the replies I received had come from his wife. It isn't hard to tell which person they came from; their styles and wording are completely different.

My dad's responses come with no capitalization, no periods, and are usually confusing because, for some reason, he skips words, shortens them, or misspells them altogether. Although the first time, a few years ago after he bought a REAL phone, he added LOL in a text to me - I was the one who burst out laughing. My 70-ish dad was learning the acronyms of texting.

I have no idea how long I sat in that chair crying and it was hard to pull myself together. It was obvious that I was employed by the hospital due to the scrubs I was wearing and I didn't think it very professional to walk through the hospital crying like a baby.

When I finally stood up and walked toward the cafeteria, the original reason why I had varied enormously from my normal routine, to find No-Bake cookies. As I was standing in front of the cookies I started crying again - and not because there were no No-Bake cookies left - I was feeling childish for everything that had transpired between my dad, his wife and me last fall/winter.

I finally settled on an entree in a to-go box and stepped in line for purchase where I also started crying all over again. I gave up on holding the emotions in. I cried all the way home.

By pure coincidence, by varying from my usual routine, and wanting to feed my desire for No-Bake cookies, I had seen my dad for the first time in almost a year.

I cried myself to sleep.

* When I started working in my current position at the hospital I was fortunate enough to be "trained" by a very unhappy, evil, bitch of a woman. During 4 weeks or so of training I was logged into my own profile, on HER computer. 

One day, the manager asked to speak with me privately in her office. After we sat down in her office she asked me if I had looked at my own chart. That answer was easy and truthful, "Never!" She went on to say that security had notified her of this and before she assumed I was guilty she wanted to talk with me first.

I told her I knew the consequences of such an action and NEVER in a lifetime would I do that. She took my word for it and the issue was settled with security.

It wasn't until several days later, when the woman who was training me, said something to another employee, that it clicked: SHE was the person who had been in my chart while it was logged in under my name and forgot to secure when I walked away from my desk.

I never said anything to my manager about it and now lock my computer without fail when I am not sitting in front of it.

The evil woman retired not long after that.

** I am fairly certain my dad's wife thought I had been in my dad's chart and discovered he was there.