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//Life is short…

Life is short…

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By |2018-08-28T08:45:57+00:00April 28th, 2015|2015|6 Comments

About the Author:

Author of Happily Ever After - My Journey with Guillain-Barre Syndrome and How I Got My Life Back.

6 Comments

  1. lovinlife38 November 9, 2015 at 11:50pm11 - Reply

    I just watched your video again for the 3rd time in 3 years. I was diagnosed with CIDP in January 2013. I thought my life was over, I was told by my neurologist that there is no cure, only medications and treatments for the rest of my life. I would pray everyday for God to just take my life so I wouldn’t have to live in this misery and be dependent on a wheelchair or someone else to take care of me. I developed drop foot, my hands were useless, I couldn’t straighten my fingers, I had no balance, I would trip and fall all the time and was always in pain due to my nerves. I reached out on Facebook to some CIDP groups and one day a lady mentioned HSCT. I had no clue what it was, but she made it sound like a miracle. She shared her blog with me and I saw that chemo was involved. That scared me and I put the thought in the back of my head. I realized one day that I was not going to get better unless I tried and made an effort. I asked her if she would do it all over again if need be and she said “In a Heartbeat.” I figured it couldnt be that bad then so, I reached out to Dr. Burt in Chicago who is doing a trial/study with stem cell transplants. I was called to come to Chicago for an evaluation and was told I was a great candidate. A month later, I flew back to Chicago for pretesting and passed everything. No other underlying issues, I was healthy except for CIDP. 3 months later I flew back out to start my journey with HSCT. A round of chemo and 5 days later I had to inject myself with a drug to mass produce new stem cells to come out of my bones, that was a very painful process, but worth every minute of it. On day 6 of the shots I was admitted for the day to have my stem cells harvested. The goal, to collect at least 2 million stem cells. After 6 hours of harvesting, we collected 5.5 million. Two days later I flew home to wait for the last part of the journey and thats when my hair fell out. I was devastated, but took the power into my own hands and shaved my head completely bald. I then flew back to Chicago after 11 days ot be admitted back into the hospital for 2 1/2 weeks. The first 5 days consisted of chemo, rATG, steroids and other fluids and I felt like death. March 5, 2014 I had my stem cells transplanted back into me and then it was 10 days of waiting for my white blood counts, platelets and red blood counts to come back up to a safe level. At 5 months post transplant I was able to walk again unassisted, 6 months post transplant I was able to get back on my bike and ride again, 7 months post transplant I was able to run again and today, 20 months post transplant I am on top of the world, my CIDP is in remission, completely symptom free, no longer on any medications or treatments and grateful for everything I have been given, the good and the bad. I thank God everyday for not granting my wish of taking me from this earth. I know what it feels like to be near death, not be able to take care of myself and be given a second chance at living again. In the process of my recovery, I too lost my relationship of 16 years. He was by my side throughout my illness and transplant and once I was better, we just took different paths in how we see life. I am so happy to hear that you have gotten so involved in the GBS/CIDP foundation and spreading the word about this horrible disease. You are in inspiration and thank you for sharing your video with the world. -Stacey Dematos- CIDP/HSCT Survivor

  2. Leanne July 22, 2015 at 11:50am07 - Reply

    Holly,
    Words cannot describe the emotional I went through whilst watching your video, as a mother of two young children I cannot comprehend the overnight changes you and your family went through. I have nothing but admiration for you and you have made me think about the way I look at life, I want to make a postitive change for myself and my family, your determination and strength is astonishing. So I thank you for being the true reminder that life is too short.
    I will cherish each moment thanks to you and your powerful video.
    XoXo

  3. Jean July 20, 2015 at 11:50pm07 - Reply

    I am a survivor of GBS, At age 52 in 1998 I was luckily diagnosed within 24 hours of my first symptoms. I lived in a small town in Northern California, there wasn’t a neurologist in the area, so thank god there was the internet. From Ukiah CA I was sent to University of California in San Francisco. There I received a brand new treatment that had only been used 1 or 2 times before me. They gave me a phony disease, causing my white corpuscles to react the correct way. This IV treatment lasted for 5 days. It kept the disease from progressing and virtually stopped the numbing in it’s tracks. All these years later, I still have numb spots on the bottoms of my feet, and a few other odd things that never went away, but I am living my happier after.

    • hollygerlach August 6, 2015 at 11:50pm08 - Reply

      Congrats to you on getting to where you are today 🙂 THanks for the note!

  4. Maddy May 8, 2015 at 11:50pm05 - Reply

    You are amazing! I have just watched the video of your journey in awe! You should be an inspiration to everyone!

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