It has been a while since I have written a column. So much has been happening, but at long last, I am able to sit back on the couch and not immediately pass out from absolute exhaustion. So, I thought it would be a good time to write a little catch-up column on everything that has happened.
We reached the funding target needed for a stem cell transplant! This still feels like an absolute dream, and I am blown away by everyone’s generosity. This is my last shot at “normality,” and I didn’t know if I would ever get the opportunity. It seemed like such a far-away dream.
To my family, friends, and strangers who shared my pleas, organized fundraisers, sent messages of encouragement, and helped financially: You all have contributed toward saving my life, and for this, I will always be grateful. How do I even begin to thank you for putting my Christmas wish at the top of your list? My heart is so full, and I can only pray that your kindness will be returned tenfold.
We had a great fundraising event called “The Snow Ball,” a fabulous night of laughing until my cheeks hurt, dancing until we fell over our own feet, and many, many snowflakes. We were celebrating life, a second chance, and the support shown by a community of wonderful people.
Now, a bit more about my transplant: It is why I have been quiet, trying to process what will happen next. Transplant is my chance at “normality” once again, but it also comes with great risks.
My family and I went to see my doctor, who drilled this point into us. We need to be aware of the possible complications and the high chance of infection. Of the 20 people who have had this procedure worldwide, only nine have survived. That’s 45 percent. The other 11 didn’t make it due to infection and their bodies simply not coping with what happened.
This absolutely terrifies me and is a reality I must face. I am starting injections to help release my own stem cells into my blood. These will be removed and safely stored for when they will be transplanted back into me later. This is not a painful procedure, much like giving blood, so I am not concerned about it.
Then, I’ll have plasmapheresis to ensure I am strong enough to handle what is to come next.
Finally, the tough part will begin. We need to do a hard reset of my body to restore the antibodies to “factory settings” and hopefully get my body to function as it should. This involves chemotherapy, like that used with cancer patients, and admission into isolation. It will destroy my immune system, which means a high chance of picking up any bugs floating around. I need to be careful for three months and wear my mask if I leave the house — which I have been advised not to do for at least a month following my final chemo treatment.
Once the chemo is over, the actual transplant happens. We use my own stem cells that have been “cleaned,” and they are put back into my body just like when a person receives blood. It sounds pretty simple, doesn’t it?
Because this is the first time the procedure will be done for myasthenia gravis in South Africa, a lot of research and back-and-forth is being done to ensure that I receive the best possible care and medication. My team of doctors is one-in-a-million, and I know this would be impossible without them.
As I write this, I have come to spend Christmas with my family so that I can see them and pour my love over them. I have accepted that this could be my last Christmas, although I am hoping against all hope that it isn’t. I have dreams, hopes, and aspirations. I have so much to be grateful for, and I know that I could never ask for a better family and extended family. I live a life of happiness, acceptance, and growth, and have truly realized that life is a gift we must appreciate every day.
Thank you for reading this, and crying and laughing with me. Thank you for encouraging me, supporting me, and just being there for my family and me. Thank you for being part of the #SaveMegs movement and helping my Christmas wish become a reality. 2019 is going to be a year of miracles and happiness!
If you would like to read more, my fundraiser is here. I won’t be able to work for up to six months following the treatment due to recovery, thus financial stress is a definite reality.
Have a great new year and appreciate your time with loved ones. Travel safely wherever you are.
Sending so much love. XOXO
Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
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