I’m preparing for my first stem cell infusion this December. Stem cell therapy is my last available treatment for my progressive and deadly disease.
During an appointment with my neurologist who is often baffled at my body’s resistance to all medications and treatments to manage my gastroparesis, dysautonomia and POTS, He said we were at a dead end.
Every day I take an array of medications, most of which have absolutely no affect on my symptoms. I take two blood pressure medications to help with my blackouts and low blood pressure, several for pain and nausea and vomiting yet the blackouts continue, the pain persists and the vomiting is relentless.
My neurologist suggested trying stem cell therapy. Although he wasn’t technically allowed to refer me to this non FDA regulated treatment, I believe he wants me to have my best chance at life and had recently done a study on the effects of it on patients with dysautonomia and they showed great improvement.
I began my research into stem cells, initially thinking I would need a transplant and knew if I were to do the transplant there was a great chance I wouldn’t survive due to the immune suppressants and my reoccurring sepsis. I was relieved to find out that it was only stem cell therapy. A process in which my own stem cells are extracted from my fat, multiplied and then infused back into my
Body to repair what is damaged.
I saw the celltex doctor who immediately approved me and said he wanted me treated with stem cells yesterday and that I would be treated aggressively with three rounds within 9 days. He really believes stem cells will help me.
The fat extraction is finished and the crater from where they sucked fat out of my butt is restored. Now we wait.
My stem cells sit in a Petrie dish multiplying. As they grow so does my hope.
I promised myself in the beginning I would not get too hopeful because In the event that the stem cells don’t change my life I will be right back on the road I am now, a very frighting and possibly short road. It would be soul crushing and spirit shattering.
How do you pick yourself up from that?
I’m already broken, tired and exhausted from fighting sepsis 6 times, how could I possibly handle it?
I saw my gastroenterologist this last week, my doctors appointment these days are often somber. I reported my increasing motility problems and my suspicion of my colon paralyzing along with the rest of my intestines. (Bathroom trips now consist of several suppositories, enemas, laxatives, blood and tears) At the end of my symptoms review and 2 sepsis bouts since my last appointment he just shook his head and said he didn’t know how to fix it. He said one of these sepsis bouts will be the killer if it continues the way it has, but to have hope that things can get better. He talked about how studies have shown that the patients hope and attitude has an affect on the outcome in surgery, so he wants me to focus on being hopeful even in my hopeless situation and maybe that will aid towards my healing when the treatment comes along.
I had a hard time swallowing this idea. I am often a logical person, I don’t necessarily think emotionally when I’m thinking about my medical situation or my life expectancy. I just think logically… statistically I should have died at sepsis #5 but here I am #6 so it’s only a matter of time. Most days this doesn’t really bother me, It’s just a fact of life and I move on and live the best I can. So how can someone see all these facts and have hope that it will just all be fine and dandy?
Is it that I just need to put all my hope in stem cells?
I don’t really feel comfortable doing that, I’m the first one with what I have doing this, there’s no way to know the outcome.
I was reminded of an old song I have a hope
I Have A Hope
I have a hope I have a future
I have a destiny that is yet awaiting me
My life’s not over a new beginning’s just begun
I have a hope I have this hope
God has a plan it’s not to harm me
But it’s to prosper me and to hear me when I call
He intercedes for me working all things for my good
Though trials may come we have this hope
Ive decided to put all my hope In God.
I have hope that I will have a future.
Whether that be here on earth or up in heaven with him.
He has a plan and it is a good plan. One not meant to Harm me but to give me a hope and a future.
After all he does say that I will have everlasting life, now that’s some future!
There is nothing here that will be better than heaven, as hard as that is to grasp and as much as I desperately want to get better and get grey hair and wrinkles I will TRUST and put my HOPE in His word.
God is the great physician and someday I will be WHOLE and HEALED! So Lord you can heal me through stem cells or you can heal me in heaven with a warm hug and a welcome home, either way I will put my hope in you and trust that you have my best interest at heart.
“The Lord delights in those who fear him, who put their hope in his unfailing love”
HUGE thank you to everyone who helped make stem cells possible for me! I am so blessed and have felt so loved to have such an army behind me. I feel so unworthy, to God be the glory and I hope we all get to see a miracle! I will be leaving for Mexico December 14th and will receive my first infustuon the 15th.