Wednesday, 12 June 2013

Evaluation [Day 2]

The Vein Check appointment was scheduled for 11am, and so we had a much more leisurely morning than we had on Monday (especially as our body clocks were still on UK time). We attended the Rube Walker blood center on the 11th floor of Galter Pavilion and I was introduced to the stem cell harvesting machine.

There was a man hooked up to it, with a vascath catheter going into his neck.

One pipe took the the blood out to the machine, and the second pipe returned the blood minus stem cells and plasma back to the body.

The man reassured me that if you have to have needles perforating your body, then this was the one to have. Up to that point I was very concerned about the vascath, but I'm much less apprehensive now.

We were lead back to the waiting room, and that was that! There was no check on my veins at all!

Anyhow, it was lunch time so we indulged in a proper American burger with fries and a Coke before our 2pm appointment with Dr Burt. As I was keen to keep UK-US relations in good order, I struck up a conversation with local law enforcement.

It was approaching 2pm, so we walked back to Medical Specialities on the 14th floor of Galter Pavilion to meet Dr Burt. We were all very excited about meeting Dr Burt after watching videos of his lectures/interviews and reading so much about his work.

He is a very busy man, and has a very no-nonsense approach to his consultations. Paula Gozdiak went through the paperwork with me, and shortly afterwards Dr Burt came into the room. We discussed my symptoms and I gave a brief account of my medical history. He looked over me for a physical examination, and then came the bombshell!

He had looked over the MRI scans taken on Monday afternoon, and these images showed massive thickening of the nerve branches (much more than he had seen before in a patient with CIDP).

He was not convinced that I have CIDP, and considered that it was most probably one of two genetic conditions based on the commentary by the radiologist made on the MRI scan.

If that is the case HSCT cannot help me, and if it is a genetic condition I now have to think about the implications for my two daughters. Our earlier excitement had vanished, as our world was slowly turning into a nightmare!

I have an EMG test scheduled for Tuesday 18 June, and meeting with Dr Allen (the neurologist) on Wednesday 19 June.

I can only be cleared for transplant if Dr Allen is able to confirm the diagnosis of CIDP and exclude any genetic connection to my illness.

So now we have an agonising 7 days.

I am still hopeful, as I have had a diagnosis of CIDP from three neurologists in the UK.

I just have to stay focused and keep positive ...

  • BEVJ Fingers crossed... I imagine the wait will be difficult though.. Just showed this to Tony who pressed like by mistake. .. Facebook virgin!!
    12 June at 23:49
  • DB Fingers crossed - hopefully Dr Allen will agree with the UK neurologists .
    13 June at 00:36
  • RV I can completely empathize. Praying for you.
    13 June at 01:57
  • VR Beni... Tony pressing like made me laugh for the first time after hearing Dr Burt's verdict!!!!
    13 June at 02:16
  • KJ Mon ... Lets all pray together Jesus can be the way & light .... I'm praying
    13 June at 04:43
  • SA Good things happen to good people...and in this case all the prayers from all your friends and family are with you....on my birthday, I make one wish....and today this year, that wish is for you...and for you to be admitted for HSCT, get treated, and become the person that you are so looking forward to will work, I have xxxxx
    13 June at 05:51
  • DC Lets hope he agrees
    13 June at 07:07
  • MRB We know the new suroundings will Keep you distracted to get the five days behind you and our prayers are there for you and lets hope for the best.
    13 June at 16:26
  • JPH I will pray! My heart goes out to all of you.
    14 June at 00:48

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