Monday, September 16, 2013

Too Good to be True

September 16, 2013:

While researching Dr. Burt and the stem cell transplant procedure I kept reading all these success stories. I heard stories of individuals who suffered from CIDP, and other auto-immune diseases, regaining their lives. Today marks my 60th day post transplant and I am honored to be telling my success story.

With each passing day I become more and more thankful that I was able to under the stem cell transplant in Chicago. Even after reading many success stories I am still shocked at the results I am having. I never would have thought that in two months I would be able to walk, climb stairs, or drive. Another promising note is that all of my blood work has been coming back excellent and my sprained foot is healing nicely.

There have been so many people that have supported me and my family these past several months. As a way to honor their support I have committed to pay it forward to others in need. The first way that I plan to pay it forward is by starting a nonprofit organization. The paperwork for the nonprofit is underway and I will soon begin setting up the organizational structure. I feel as though I should already had it set up, but then again it has only been two months. All good things come in due time.

The other venture I am working on is an annual blood drive. For those undergoing a stem cell transplant, it is almost certain that a red blood cell, or platelet, transfusion will be needed. During my transplant I received 3 units of red blood cells. The other patients I met needed at least one platelet transfusion. I was told by Amy Morgan, Dr. Burt's NP, that there have only been about 3 people in the Northwestern study to go through the stem cell process without a blood transfusion. Therefore, I feel it is important for those who are able to give blood to do so. More details about the blood drive will becoming once I have a firm time and location.

As day +60 comes to an end, I do not want to think where I would be had I not opted to pursue a stem cell transplant. Up to this point, I have noticed that I am able to walk through my house without any assistance. Also, I have noticed my stride is becoming longer and I am able to walk longer distances as long as I have my cane or walker. I am slowly regaining my endurance. Stairs are doable as long as I take my time and use the rail. Transitioning from sitting to standing is getting much easier. I have been driving short distances in my truck. Oh how I missed driving. It has been over a year since I sat behind the wheel. That has been one of the most gratifying feelings of the past week.

Please stayed tuned for more information about my nonprofit, Bryan's H.O.P.E, and the upcoming blood drive. I hope you have a great week.

















4 comments:

  1. Hi Bryan

    I was diagnosed last year with cidp and been trying to figure out the right treatment. I'm almost stable right now with plasmapheresis every 7 days.
    You're story is very inspiring. I'm so glad for you! You seem to have a great amount of support. This part is underestimated! It is sooo important.
    I was wandering if yu had to get anyohter treatment after your tranplant (ivig, plasma, pred...)?
    I understand that this illness is dealt in a case by case but it might be an interesting option.

    I'm part of the cidp group in facebook if you want to respond.

    Tnx and I hope that you keep getting better!
    :)

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    Replies
    1. Charles,

      You could not be more correct in that I do have a wonderful support system. As for my treatments, I have had none since my transplant in July. I know of a few cases where individuals needed to continue weaning off meds after HSCT. However, I think it is more typical that treatments are halted and healing begins. Thanks for sharing with me. You must have superhuman veins to hold up getting plasmapheresis every 7 days. Take care and I am glad you are stable.

      -Bryan

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  2. Oups...forgot my name
    Charles Leclerc

    ReplyDelete
  3. Hi Bryan!
    I read that you're starting a NFP and I'd love to get involved. I'm a fellow Dr Burt patient. If you're on FB, my story is here: https://www.facebook.com/pages/Trudees-Stem-Cell-Transplant-Journey/1408007966082845
    Please email me if I can be of assistance: trudee.manderfield@gmail.com
    Hope to hear from you soon!
    Trudee

    ReplyDelete