June 2, 1992 … A day neither I, nor my family are likely to ever forget. It is the day a saw was taken to have my breast bone and was opened wide to remove my thymus gland. This had the hoped for potential of putting me into remission.
October 13, 1989 I was a healthy, strong and active woman expecting (13 days past due date) her first child. October 14, 1989 I was a new mother and had been ushered into the world of medicine, medication, diagnosis processes, surgeries and the chronically ill. I had been a full time student, waitressing full time and walking 5 miles a day. Within 3 days I had double vision, my arms would fall when I’d try to do my hair or make up, swallowing and chewing had become an issue and I’d fallen several times.
It wasn’t until the second week in March, 1992 that I was diagnosed with Myasthenia Gravis. (that, is and of itself another story ) The treatment, they said, was a drug called Mestinon (I call it my little white miracle pill); Steroids; Imuran; and a thymectomy.
Because of my family situation it was decided that the thymectomy would take place in June after school was out. (Husband was a full time student, Mom was a teacher). I became more and more nervous in the intervening 3 months time. The idea of having my chest cut open was not my idea of a good time. However, by this point, I was willing to do anything to get rid of the overwhelming weakness and fatigue. Ironically, 18 years later, I’m still willing to do anything to get rid of it.
June 1, 1992 I checked into my local hospital, and was prepared, again for the surgery I’d have first thing in the morning. They had me shower and cover my chest in beta dine. I went to sleep and woke up as they were giving me a pre-surgical medication. I got down to the surgery area and was already getting a bit groggy. All I remember is that my sister in law was on duty (as a surgical nurse) and she was there making sure I was being well cared for. The anesthesiologist came up to talk to me and all I could think was “those eyes! They’re beautiful!” To which, I announced to him and everyone else around. (Not in my normal behavior!)
I was taken into the operating room where I remember the surgeon saying hi, and the beeping of the machines and then I was in recovery demanding to know if my babies were OK. My sister in law leaned over me to say that they were fine, I’d had surgery and the babies were not involved. (I must have thought there was an accident or something). The pain was unreal. The one thing my sister in law said was nice is that I’d not remember flirting with the anesthesiologist or the demands to know my children were ok. Um … nope, remember both clearly!
I had been told that morphine would not be used because of it’s associated risks with myasthenia gravis. I do not remember the medication that they said they’d used. In the operating room they gave me my first dose and apparently, I started to crash. They gave me IV Mestinon to help and then gave me morphine because worst case scenario I’d need a respirator that was going to be needed if they used the substitute medication. Ironically, the Morphine *didn’t* effect my MG. Later that day, there was a nurse that was talking to me, telling me that I would be unable to remember most of what happened due to the morphine and to not let that bother me too much. Ironically, I was probably as clear headed on the morphine as I am now (which is kind of scary if you think about it too much!).
About 6 hours into the ICU stay, a nurse came walking into my room, assuming I was asleep (MG was causing my eyelids significant drooping, it was easier to keep them closed) she told the nurse that there was this guy who claimed to be my brother, but there was no way … blond hair, significantly lighter skin and blond mustache … I grinned a myasthnic snarl and said “That’s my brother in law, Terry!” The nurse looked at me a bit sheepishly and said “boy am I glad morphine won’t allow you to remember me.” (WRONG AGAIN!)
My brother in law came in and joked with me. He told me some ridiculous joke about a llama and a camel that for the life of me I can’t remember. (Go figure)
That evening, the pain started to worsen. I asked for some pain relief and the male nurse said he’d get some morphine. No one had told me or my husband that they were using morphine. All we knew is that morphine could be cause for need for respirator. We both went into panic demanding something else. The nurse rather callously said that the only thing on his orders was morphine and he was not going to call the doctor at 9:30 pm to ask for pain relief for anyone.
My husband, became upset (understandably) and demanded a solution. My chest had been cut open and he (nurse) was going to wait till the 9 am rounds? Almost 12 hours without pain relief was unacceptable. They argued for several minutes rather loudly till the nurse slammed the door and came back in and shoved my chart at my husband to show him that they’d be using Morphine. My husband took a few deep breaths and explained to him that no one had *told* us I was getting morphine, just that it would never be used on me.
The nurse got the morphine for me, then I didn’t see anyone till the next morning. I woke up to the surgeon saying “What do you mean you’ve not checked on her since 10 pm? What is ICU FOR?” (I’ve had 15 surgeries, and 27 stays in the hospital, I’ve had 3 bad experiences, and 2 of them were in this same ICU. But when Don spent a week there, it showed no evidence of being what I’d experienced.)
A day or two after surgery I learned that respiratory therapy was going to come in about every 3 hours. They would put some liquid into this little cup, plug the tube into the wall and I’d breathe and I’d feel better. They’d have me cough and I’d wonder how someone could go from savior to torturer in 5 minutes time!
They said I’d be in the hospital for about 5 to 7 days. That came and went and neither my blood tests nor my breathing tests were where they felt they could send me home. By the 9th day, they said I was getting close. The 10th day I received a call from home, my 3 year old had stopped talking …all together. This child who was using complete sentences at 1 year old had stopped talking and stopped communicating. I spent 2 hours crying over it … afraid, worried and desperate to get home. I heard my surgeon’s voice in the hallway. I got up out of bed and walked to the nurses station and demanded to be let loose so I could go home to take care of my child. He said that anyone that could stand that straight, walk that fast and be that determined, could go home.
It would be 15 years before I realized the importance of some of the short term relationships I'd built. I was a flexible patient. Understanding, and kind. I was not demanding and was, for the most part, complient (and if I understood the importance, I was totally complient) I asked the doctors, nurses, nurses aids and respiratory therapists how their day was going. I thanked them. I tried to never take advantage of my role as patient. When my husband went into critical condition 3 years ago ... I dealt with many of the same people. They remembered me, they remembered what kind of a patient I was ..and they bent over backwards in their patient care of my husband. (While I realize most people might not be remembered, having such a rare illness as Myasthenia Gravis, married to someone with SEVERE effects of polio .. that patient kind of sticks out in ones mind)
They let me go and a week later I was in the surgeon’s office … my baby (6 months old and 18 pounds) had been hospitalized with pneumonia. He’d gotten hungry and the nurses weren’t coming to pick him up to give to me to feed him. Time went on and he was becoming hysterical and I picked him up … a bit more than the 5lb limit I’d been given. My breastbone immediately let me know that I’d made a drastic mistake. The surgeon said I should have just given him the bottle in bed … the problem was, his reflex was so severe that he’d throw up if he wasn’t at just the right angle, he’d throw up (which was the suspected cause of the pneumonia, aspiration). It wasn’t that easy … so the surgeon called the pediatric floor and said that they MUST do the lifting of this child in a timely manner that did not risk his patients health in the process. He also put in a call to the family doc who was caring for both myself post surgery and my baby.
At the time, I was sure that the thymectomy would be my ‘miracle’ heal from the surgery and sometime in the next 3 years the MG would magically go away. It didn’t work that way. It’s been 18 and while MG is no longer the prominent focus of my life that it once was … it is still there, daily as a reminder that I must put my health in the forefront.
I have been asked, since the surgery did not work, would I do it again if given the chance, knowing what I know now (about the chances of it working). Yeah, I would, I’d have done anything to rid myself of the feeling in my muscles that it gives. The reality is, if I went to my neuro tomorrow (I have an appt at 9 am) and he said “there is evidence that we missed a bit in your thymectomy, if we go in and remove the remaining cells, there is a 10% chance of total remission” I’d do it .. it’s 18 years and I’m significantly better …but the weakness is uncomfortable and undesirable and again .. I’d probably do anything to rid myself of the symptoms of the MG.
