June 2018 – MG Hope

Weakness in Paradise: Traveling with Myasthenia Gravis

I was officially diagnosed with Myasthenia Gravis in the spring of 2017, even though I began developing symptoms two years earlier. Shortly after starting two daily medications, I was getting my symptoms under control and learning how to navigate the MG mindfield.

Three months after my official MG diagnosis, I’m boarding an airplane for a nine day, four island adventure in Hawaii. I was going with a best friend and for both of us, this trip would be our 50th state to visit.

Our first day in Hawaii was spent in Honolulu, driving around the island of Oahu and enjoying our first real Hawaiian food and the beautiful weather. The next day we were up early at 5:30 in order to get to Pearl Harbor early. We had to be in line at 8:00 am in order to get tickets to the USS Arizona Memorial. After touring Pearl Harbor, we visited some other attractions before heading back to the airport, turning in the rental and catching our flight from Oahu to the Big Island.

Arriving at the Kona Airport on the Big Island, it was late in the afternoon. We toured Kona, had a great dinner and got to see some of the sights, then called it a day. The MG was starting to cause a few problems, primarily neck weakness, but I was keeping up my meds and felt confident it was under control.

Getting up early and checking out of the hotel, we head for Mauna Kea, the tallest point in Hawaii. At 13,806’ above sea level, it can be exhausting even for healthy people, but what incredible views. We followed the recommendations of the Maunakea Visitor Information Center and spent an hour at their 9,000 foot elevation location. This gave us a chance to get acclimated to the thinner atmosphere and buy some over-priced souvenirs.

I was really surprised to find I could breathe easily at the summit, and after taking in the views, it was time to return to sea level and tour more of the Big Island. We visited Volcanoes National Park, walked on old lava flows and witnessed the lava glow at night from the Halema’uma’u Crater. We even made it to South Point, the most southern location in the U.S. After that, it was back to the hotel and grab some sleep. The next day was when my MG really started rearing it’s ugly head. I could barely hold my head up for more than a few minutes, and if I looked downward, I couldn’t raise my head back up without using my hands to help. I tried a slight increase of my Mestinon dosage, and that only resulted in abdominal spasms and more frequent stops looking for a restroom. The neck weakness remained.

Departing the Big Island on Hawaiian Air, we flew over Maui, our next destination. We had to fly to Honolulu, deplane, had a short layover and then catch a different plane to Maui. The airport was barely air conditioned, and the outside temperatures were typical tropical weather, 80’s and humid. Dragging my suitcase, CPAP and carrying my camera bag, my head was now permanently hanging on my chest if I can’t manually hold it up. I got a few strange looks from the flight crew but no one said anything

On the flight, I discovered that if I could sit slightly reclined, I could essentially balance my head on my shoulders and hold it up. While seated I could turn my head right and left with no difficulty, but if I was walking, I was looking down. And when you had to return your seat to an upright position on the aircraft, I was again forced to support my head with my hand.

The remainder of my Hawaiian vacation was filled with beautiful sights, some great food, and some scary respiratory issues that almost sent me to the E.R. Because we had to carry all of our belongings from island to island, each flight was labor-intensive. Each time we landed, we had to then carry our belongings through the un-air conditioned airports, and load them on the airport shuttle to the car rental facility. Then unload everything at the car rental, load it in the car, then head to the hotel and unload. I think that this was my real downfall, all of the loading and unloading of our carry-ons and luggage, and multiple times we had to do this for each excursion. I was fortunate that my friend was a Respiratory Therapist and she kept a close eye on my breathing. We considered cancelling the rest of the island visits and just rest in Honolulu, but I felt confident we could make it.

We continued the trip visiting Kauai, the last of the four main islands of Hawaii. We had now seen Pearl Harbor, the Mauna Kea Observatories, and the active volcano at Volcanoes National Park. The beautiful beaches of Maui, the actual gates for Jurassic Park, all have been visited. Almost all of our travel checklist was completed.

On our last night in Hawaii, we returned to Honolulu for our return flight home the next day. We were fortunate to get tickets to the premier Hawaiian Luau in Honolulu, Paradise Cove, but the MG was really getting out of control. Now I was dealing with neck weakness, difficulty swallowing, and GI issues. The luau was outdoors, but it was late afternoon and thankfully there was a nice breeze. The ocean breeze and the views helped moderate the heat and humidity.

The food was awesome, but in order to eat it, I had to hold my head up. I discovered holding your head up with a hand beneath your chin just doesn’t work. I’m trying to chew and my head is bobbing up and down like a bobble-head doll. OK, time for Plan B. I used my left hand and pressed against my forehead, then fed myself with my right hand, all the while trying to lean back slightly in my seat. I was successful about 80% of the time, and the unsuccessful 20% was accumulating on my shirt. Yes, people were glancing in my direction occasionally and you could tell they had no idea why I was wearing my dinner. It was certainly an evening to remember.

In Hawaii, I learned that “Aloha” is used for both “hello” and “goodbye”. However, the true meaning of “Aloha” is that of Love, Peace, and Compassion. I can honestly say that Aloha describes the Hawaiian people, they were truly the friendliest, happiest people I’ve ever met. “Aloha” is also what I get from this wonderful Myasthenia Gravis Unmasked Community, and from Rebekah, our brave, compassionate and beautiful leader.

I have written this short story to hopefully inspire my fellow MG Warriors that travel with MG is not only possible, it can be enjoyable. Just remember to consider all of the additional challenges you will be facing on your trip. Remember the weather can be a significant factor with MG, and so can significant elevation changes. I was very fortunate to have a good friend with me that was understanding and supportive. I would certainly make this trip again, but next time I would take it a little bit slower. I don’t intend to let MG control me, I’m going to control it. I just have to keep learning from my mistakes.

Aloha!

Author
Bryan Lamb

The Life I Knew Changed with Myasthenia Gravis

I am writing this letter on my own behalf. I feel it is necessary although not common yet for patients to be advocates for themselves in these situations. I am an honest person, a wife for ten years, mother of two children eight and ten, college graduate with honors, a loyal employee, and U.S. citizen. I have gone through dramatic changes in the last four years. I was diagnosed with Myasthenia Gravis when I was approximately 23 years old, in spite of this autoimmune neuromuscular disease I finished college while working full time.

Upon graduation I became a surgical/ medical instrument representative for a well know company. This job required me to travel, sometimes a great distance, on an almost daily basis. Prior to September 2014 I had Myasthenia Gravis, with daily symptoms and worked fulltime. At that time, I didn’t realize I was pushing my body too hard, therefore suffering physically and my Myasthenia Gravis (MG) not improving. There were times I couldn’t speak and would have to cancel appointments, I didn’t entertain clients where food was involved as chewing food was difficult at times or I would have to use the restroom multiple times due to rapid transition of the bowels, a side effect for me from the mestinon.

Somedays my body wouldn’t move well or my fingers at all, somedays I would get sick and it would take weeks to recover. I would then have to cancel appointments again. My life as I knew it came to an abrupt halt in September of 2014 when I had an MG crisis and was put on life support in hospital near the town I was living. I was on life support for over two weeks at times not know if I was going to live or die but I fought because of my family. During the month of September 2014 I went to the emergency room as I thought I had a cold or bronchitis. I planned on being back home within four hours per the emergency room protocol. Four days later I remember waking up and not knowing where I was, why I was in that room, why I was hooked up to machines, why I couldn’t move or talk, and so on. I remember waking up the next few days having the same feeling. I was sent to the Intensive Care Unit on life support, had bilateral chest tubes, the Rhino Virus, the Entero68 virus, pneumonia, was given paralytics in the Emergency room which is contraindicated for a myasthenia gravis patient, was given antibiotics that was verbally communicated and documented was a contraindicated medicine for a myasthenia gravis patient, had pneumothorax, and had pneumoperitoneum.

After three weeks on life support and being bed ridden I had to learn to breathe again, which is something we are born doing naturally, so to learn how to do this and accept it emotionally was overwhelming. I also had to learn to swallow, control my pee, poop, talk, sit, stand, walk, exercise, and more. This is just the physical part I had to do in the hospital. The emotional part came later. The ICU doctors and team had to do their part as well to keep me alive, with daily bronchoscopes for eighth days after being extubated. I had chest tubes having to be reinserted after pulling them out too soon. I also had a wound to my lip due to being intubated resulting in permanent scaring. Three years has passed since that incident.

I have gone to multiple physical therapy appointments, counseling appointments, primary care doctor appointments, chiropractic appointments, massages, pulmonologist, neurologists, rheumatologists, dermatologist, and more. I have done 16 doses (four rounds) consisting of one day a week, 4-7 hours each day, for four weeks of Rituximab. Approximately 135-225 doses (forty-five rounds) of intravenous immunoglobulins (IVIG) consisting of 3-5 days, 3-5 hours each day every four weeks. I currently am having a hard time with vein access for the (IVIG). Having to do this treatment plan makes me lethargic, I sometimes have flu like symtpoms, my immune sysytem is lowered, I tend to get infections easier, I am unreliable due to my phsyical pain and emtional truama, I dont know when the Rituximab is always needed therefore making long term commitments is difficult.

The physicaly therapist have done all they can and the pain that I have daily is not something they can address or fix. I have been going to counseling appointments over the last two years. I have come a longway but still have problems with large crowds, germs, being away from home for very long, going anywhere overnight, going to any type of healthcare setting, watching anything hospital related on television, and more. I have tried to volunteer in the community but always tend to only do half or less of what is planned initially due to my current condition. I go through daily emotional trauma from the experience. I currently have anxiety, was diagnosed with PTSD, and insomnia (side effect of prednisone, mestinon, anxiety and PTSD). I have daily physical trauma from the experience. I currently have pain in my neck, thoracic and torso area.

I have numerous scars that hurt with the changing weather. My immune system is extremely low due to a previous thymectomy, being on prednisone, doing regular IVIG treatments and the Rituximab treatments. My body, and emotions are not the same as they were before, the current medical treatments needed for my body keeps me from be reliable and committed to things beyond my control. In my opinion, I came out of that tragedy a totally different person and I believe I will never be the same person. I had counseling, have anxiety attacks and am afraid to travel over two blocks to take the children to school preferring not to even leave our home (my safe place). I can no longer talk comfortably to people and do everything possible to avoid crowds. I try to volunteer when I can but have to cancel a lot. The worst part is I found out the hard way that autoimmune disorders can be passed on to your children. My son was diagnosed last year with colitis. I pray everyday a cure is found for my son and I. Thank you for listening!

Author
Keri Soto

Patience in the middle of the mess with Myasthenia Gravis

Patience- the capacity to accept or tolerate delay, trouble, or SUFFERING without getting angry or upset.

The natural doesn’t make an ounce of sense. Here’s the deal. Surgery was started, incisions were made, the robot was put in place and then my oxygen levels dropped to dangerous levels so they had to stop surgery. The surgeon thought that maybe there was a blood clot in my lung- which is common after IVIG treatments- took me for x-ray and NOTHING! No explanation. They took me to ICU where it took 3 hours for me to come out of the anesthesia… which resulted in me needing the respirator. that was the pits! Panic and discomfort are the words to describe it.

Once I got my bearings I was told the news… no thymectomy. I couldn’t believe it. Everything that had been done to prepare for this surgery- my students not having their teacher, the unpaid leave, the expensive treatments, the pain and discomfort I was feeling- all in vain. How could this be?!

“The capacity to ACCEPT SUFFERING without anger.” I must accept that God knows what is best and for some reason He stopped the surgery. I cannot get wrapped up in the expenses, the delays, the suffering. I’d had very specific prayer requests… for the anesthesia to not make me panic, that I wake up normally from the anesthesia, for my recovery to go well, and for my cure. I didn’t even realize when they gave me the anesthesia, the recovery is going well (my MG hasn’t flared up at all- this is HUGE) the respirator was only for 3 hours Vs days, and my cure is up to Him.

So even though this didn’t go the way we’d hoped we still hold steadfast to our hope in Him.

“But blessed is the one who trusts in the Lord,
whose confidence is in him.
They will be like a tree planted by the water
that sends out its roots by the stream.
It does not fear when heat comes;
its leaves are always green.
It has no worries in a year of drought
and never fails to bear fruit.”
Jeremiah 17:7-8

Author: Linda Nulisch