Day +12 [Addendum]

Before leaving hospital I had told Dr Burt that first thing in the morning my hearing had improved since the transplant, although this would worsen during the day.

I cited my evidence being that I could hear the nurses talk to me without the use of my hearing aid.

He shook his head before saying "Oh no, I don't think we've done you any favours if you can listen to a woman in the morning"

I wonder what he meant?

Seen by 31

WM I wonder???......:)))
3 August at 21:47

DR Let's hope this is the only side effect! 
3 August at 23:03

ML And I had such respect for Dr Burt .......
3 August at 23:15

SB Lol .. You have 3 young ladies to listen to., your ears are blessed !!

4 August at 15:11

Day +12

I decided to re-assess my baseline today, in order to measure any improvement in my condition.

I currently suffer from:

1. Hand tremors
2. Poor balance
3. Weakness in arms and legs
4. Little sensation in feet or finger tips
5. Clawing of my hands
6. Foot drop in my left leg

These are the symptoms that I hope will improve over the next 12 to 24 months.

What is amazing, and an improvement worthy of note, is the change to my sleep. 

For the last 8 years, I have suffered from sleep apnoea which required the use of a CPAP machine (JP has been telling me for years that I shouldn't need it due to my physical build). But if I didn't use it, I would stop breathing at night and so it became part of my bedtime routine.

While I was in hospital, Vineetha noticed that I no longer snored (I've snored our entire married life). So I tried an experiment, 'Sleeping without CPAP' for the last 3 nights.

It's not conclusive, but I could be CPAP free, as I am sleeping well and wake up refreshed. Is this another benefit of the SCT? I don't know, but I'll take it!

Anyhow, we've moved out of downtown Chicago and are now near to the airport for two nights.

The girls will be with us tomorrow night, and we're so glad to have them back.

And on Sunday we will be on our way home ....

• Seen by 32
• BTR Oh, I forgot to add Loss of Hearing ...

  3 August at 15:02
• DC Pardon?

  3 August at 15:07
• BTR The loss of hearing is quite useful at times, especially when I've forgotten to do something 

  3 August at 15:15
• BAH Great news about the CPAP. Just remember, little by little things will get better. I bet you can't wait to see your daughters. Have a safe trip home. Your family is always in my prayers. -Bryan

  3 August at 15:43
• WM Hope we still going to get these daily updates Ben when you get home.... Will miss it otherwise!!! X

  3 August at 19:34

CIDP and my journey to cure it

I suffer from CIDP (Chronic Inflammatory Demyelineating Polyneuropathy) 

CIDP is a disease affecting the peripheral nervous system. My illness was diagnosed in November 2003, and at that time my only disability was a slight tremor in my hands.

Unfortunately, my condition worsened over the years to the extent that I now exhibit the following symptoms.

1. Hand tremors
2. Poor balance
3. Weakness in arms and legs
4. Little sensation in feet or finger tips
5. Clawing of my hands
6. Foot drop in my left leg
7. Loss of hearing

When I go to sleep at night, my body is wracked with tingling and nerve pain. 

But this is the life that I have grown accustomed to as the illness progressed, and I have to live with it.

But not anymore!!

Dr Burt at Northwestern Memorial Hospital (NMH) in Chicago is carrying out a clinical trial using haemotopoetic stem cell transplant to treat people with CIDP. I have been offered an appointment at NMH to evaluate my condition to see if I qualify under the criteria of the trial. If I do qualify, the next step would be to move onto transplant.


The Science Bit
There are embryonic stem cells from embryos and haematopoetic stem cells from the blood. The trial I am hoping to be accepted for uses stem cells which will be harvested from my blood. These stem cells are more mature than embryonic ones, but are still undifferentiated enough to form all the components of the blood, including the immune cells. 

The basic idea of SCT is to "Treat the illness not the symptom". In order to do this my defective immune system (being the cause of my disease) is wiped out with chemotherapy. This is followed by using the haematopoetic stem cells to build a new immune system without memory of the 'trigger' that is causing the attack on my peripheral nerves. 

With the disease having been removed by chemotherapy, my recovery from disability is dependent on how well my body can repair the existing nerve damage and muscle loss.

The building blocks of my plan are falling into place ..

• Medical notes sent to Chicago
• Conference call with Dr Burt completed
• Evaluation schedule from NMH received
• Cancelled my wife's patient list for 2 months
• Arranged to pull my girls out of school 4 weeks early
• Flights booked
• Accommodation booked 

I'm now ready to go the full 12 rounds against CIDP, hoping for a TKO