Tuesday, March 4, 2014

The Follow Up

March 4, 2014

Last week Ann and I traveled back to Chicago for the first of 6 follow up visits. CIDP patient who participate in this clinical trial will return to Chicago at 6 months, 1 year, and then annually for the next five years in order to have their progress monitored. I was so excited to show off my progress to Dr. Burt and his team.

After we got checked into our hotel and met up with another CIDP patient, it was off to my appointment with Dr. Burt. There I sat in the examination room chair anxiously awaiting my turn. I listened attentively to the voices in the hallway in anticipation of Dr. Burt's arrival. Then all at once the door burst open and Dr. Burt came bounding through it. We abruptly exchanged some pleasantries and then it was down to business.

Dr. Burt, armed with paper and pen, quickly asserted himself at the desk where he would begin firing questions at me. "How old are you?" "When was your transplant?" "Have you had any hospitalizations?" Finally, Dr. Burt asked the most important question, "What can you do now that you could not do before?"

As I explained how I gone from a wheelchair to walking, climbing stairs, driving, and how my stamina has begin steadily increasing. I further explained to him how I felt that I am slowly getting my life back. I could see Dr. Burt begin to beam with delight at my answers. It was not a self full-filling delight; he was genuinely delighted at MY progress.

Once Dr. Burt was finished with my examination he asked a favor of me. Two actually. The first was to share my transplant story with a neurologist who has been shadowing Dr. Burt. Which I quickly accepted. As Dr. Burt asked the second favor, he took my hand and looked me in the eyes and asked me to share my story with the world. It was quite a touching moment between him and I.

The second day brought about pain. It was time to have my nerves tested to see how they are responding after the treatment. I have had quite a few nerve conduction tests over the past 20 years and this was without a doubt the most painful one I have ever experienced. I took this as a good sign and my nerves were finally beginning to work properly. Dr. Allen, the neurologist who conducts these torture tests, was evasive when I prodded him for the results. He assured me we would go over the results at my appointment the next day.

On the final day of my visit I would get a total neurological examination from Dr. Allen and also get the results of my nerve conduction tests. One of the main tests administered is the sit, stand, walk, and sit test. For this test, I started out sitting in a chair. Then I have to rise from the seat and walk to a designated point, turn around, walk back to the chair and sit down. Last year it took me about 40 seconds to do this test using the assistance of a walker. This year I completed this task in 7 seconds and I did not use any assistance (no walker or cane). How's that for improvement? Remember I am on no medicines for CIDP. No IVIG. No Steroids. Nothing. For the first time in over 20 years I am not taking anything to treat my CIDP and my health is improving.

Now, it was the moment I had secretly been waiting for. The results of my nerve conduction test. The verdict was in and Dr. Allen informed me that my numbers had improved since June. However, he did caution me to not put too much stock in my nerve conduction test. He said that I will probably never have a "normal" reading. For me, I realized that I do not care if I ever have a "normal" result as long as my health is stable and I no longer need CIDP medications.

From my trip to Chicago I have once again been humbled. During this visit Ann and I got to meet several families who were in town to visit Dr. Burt. The people we met were at various stages of the process. Some were there for the initial evaluation. One gentleman had just been accepted. Others were waiting to be admitted into the hospital to begin. One had already received the transplant and was just waiting for blood counts to rise. Meanwhile, several were beginning their chemotherapy.

Having the opportunity to meet with these people filled my heart. It makes me realize I need to do more. I keep replaying that moment where Dr. Burt grabbed my hand, looked me in the eyes, and asked me to share my story with the world. I have flirted with the idea of becoming a motivational speaker, but have been afraid to step out of my comfort zone.  I think this is something that I need to explore further. Be prepared......I will probably be posting videos of my story soon.


  1. I am overjoyed for your progress and success. I have been waiting all night for this blog to show! SO happy for your blessings from God. God surely has a wonderful plan for your life. Sharon Wilkinson

  2. Dear Bryan,
    I cried like a baby when I read this post... I was recently in the hospital with my mom who has CIPD. She is 62 and has been in a chair for the last 10 years... I read an article in a magazine that gave me this blogpost, I found it in the family lounge at the hospital and wrote it down I don't know if this is the best way to communicate with you but I thought it was worth a try. My moms disease has progressed rapidly in the last 2 years where she is no longer able to use her hands. The doctors say it will only get worse and there is nothing to do at this point. What do you say - what do you think? I'm so inspired by your story and feel that your decision to share it was leading up to the moment that I found you. Please, please contact me or anyone who reads this, please reply so that I may find help me with resources and information. My e-mail is tamiw06@gmail.com. Thank you so much for sharing your story and my sincere blessings and good wishes in your journey. Tami W

    1. Tami,
      So glad you have found comfort from this blog. I have sent you an email and I look forward to speaking with you.

  3. Bryan,
    Thank you for sharing. I read your entire story aloud to my husband today, start to finish. We laughed a little and cried a lot, more than anything we let ourselves hope. My husband, Joe, has had CIDP for 14 years. He has had IVIG, plasma exchange, and a whole of different drugs. Nothing works and in fact it makes him worse. He has lived relatively well these past 14 years with a good amount of pain and only minor dysfunction. He had a nasty relapse last fall and he went from being almost 100% independent to needing assistance with literally everything. Thankfully he has been able to stay out of a wheelchair, but just barely. We are currently waiting to hear from Dr. Burts office for an initial evaluation. We have a tentative appointment for June, but his most recient lp came back with results that were, according to his neurologist "not exactly what the study is looking for, but Dr. Burt is still going to review your whole case". Which I take as a positive sign, but if we don't get accepted I don't know where God wants us. I pray its not outside of the US. We're gonna go where He leads us. If you would like to exchange emails I'm sure my husband would like to pick your brain. Nicolearcese@yahoo.com.

    -Joe & Nicole

    1. I would be happy to speak with your husband. I sent you an email. I look forward to hearing from you.

    2. Dear Bryan -

      I have been meaning to write to you for a long time, with my appreciation! I succumbed to CIDP in 2005, paralyzed from the neck down for a year, residing in hospital beds at Mayo and other institutions. It just so happened that during my fourth relapse in summer 2013, we were living in England (my husband is English and we've lived/worked here off and on for years) and I met with an incredible neurologist. He offered me the option of stem cell transplant - one of the first in the UK for CIDP (however, British medicine is way ahead of us, it seems, with MS SCT etc.). My 'day 0' was May 6 of last year - whew, do I feel better now! My pain is totally different, and so much less; my strength and energy and zest are so much greater. I will be eternally grateful for this gift - I am so so lucky.

      Your blog played an important role in my journey, Bryan - I read and re-read your entries before, during, and even after my treatment. Indeed, your info, thoughts, and feelings often steered my expectations for any given day - so much so that my doctors would sometimes greet me, 'How's Bryan today? Oh, and yourself?!' Really - you and Ann helped me and my family go through this chapter with much greater comfort on many levels - thank you!

      I also need to mention that my treatment was offered through the UK's 'National Health Service' - the NHS, socialized medicine, as such. The service I received was superior to any I received in the States - and it was offered without the threats or challenges of insurance issues that I know you encountered, Bryan, and I encountered when living in the US with CIDP. My treatment, from start to current, almost a year after stem cell harvest, has been delivered hassle and bureaucracy-free, with professional competence, kind spirit and good humor at literally every little step. I am in awe of the NHS. So, to you nay-sayers of 'socialized medicine,' I only hope that, as citizens and sometimes health sufferers, we can shed our ignorance, open our eyes, and do our research to understand how different 'health service delivery models' work throughout the world. So that we might guide our decision-makers more proactively, and offer effective and efficient health care to those who need it, when they need it. I'll get off this soap-box, but I certainly would like to lend a patient's different perspective to the US health care dilema!

      Thank you, Bryan - I hope you are continuing with your strengthening process, in all ways - I'd love an update!
      All the Best,
      Susan (mcallister076@gmail.com)