I guess when your cliff diving,......you need the water to be in before you dive in.  Kind of like stem cell headaches......no water (fluid).....head hurts real bad.

I guess when your cliff diving,......you need the water to be in before you dive in. Kind of like stem cell headaches......no water (fluid).....head hurts real bad.

Well……a little over  two weeks post transplant and all is well

 

When you work graveyard shift and then fly halfway around the world for stem cell…nothing really changes.  There is no “jet-lag” because basically you have flown right into your sleep schedule.

Coming home……now that was another story.  “Jet lag city” and also some post transplant weakness.

The body was also a little tired after I came home from Israel (bone marrow aspiration) back in early July.  It should get better here this next week.

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This last week has been about making adjustments.

 – Jet lag

– Weak legs from stem cell and travel

– Trying to incorporate a work-out schedule before I return to work in November.

– Catching up on bills (I thought short term disability paid 66% of my salary…..looks as though it will only pay 19%…..a huge miss on my part……not that it would have made a difference in my decision to do this……but dissapointing none-the-less).

– Catching up with kids and family

– And making rehab appointments like crazy

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I met w/ my new physical therapy Doctor and we went over what happened that day (in Greece) and a game plan for rehab moving forward.  I told him that I was already working out more and had the energy to do so.  He will be working with my old physical therapist and she will report directly to him.  It nice to have a doctor dedicated solely to my rehab efforts.  Physical therapy starts today and will be 2-3 times a week for the first couple of weeks till we get a routine established.  This is going to work. 

He had a very interesting theory as to why the headaches the day of transplant were so bad.  He explained to me that the reasoning for the positioning was that there was a hole in the spinal column that houses the fluid. 

The purpose for positioning maybe two fold.  One…To see that the cells reach the brain.  Two,… to make sure that no fluid is lost out of the spinal column via the hole. It made sense…….maybe because the explanation was in English. 

A possible spinal fluid leak could attribute to the pounding headaches.  The brain floats in the same fluid…change the amount of fluid,….and the brain is all of a sudden “not happy”.  I think my brain let me know with a sledge hammer inside my scull for those forty hours post transplant.

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My monthly Tysabri was yesterday and I met with Dr Kita for the first time since my return.  Good to see her.  We talked of the day that the stem cells are working so good that we will dump the Tysabri all together.  Sounds good to me.  After I returned from Israel earlier this year….I had a Tysabri treatment and things were then a lot better.  I am hoping for that to be true now as since my return my legs have been down in the strength department. 

The reason I would want to dump Tysabri in the future is that Tysabri has a risk factor.  All-be-it a small risk……It’s the kind of risk that people that take the drug don’t like to talk about.  I dream of the day I can get out from under that one.

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Physically I have been feeling OK.  Only one improvement to report so far.  Left hand circulation has improved. 

The feeling sensation in my left hand has improved a little bit……but mainly a coloring and temperature improvement. My left hand has always been colder than my right the last few years.

I went through 2years and three months of Novantrone (the drug is a type of chemotherapy) starting back in 2004. In the final year of Novantrone (approx Nov. 2005) my left hand nails started to disintegrate. I was building a house at the time and dismissed it to working construction or a nail fungus thing?

Well……..forward to now…….my left hand nails are still messed up. It’s not nail fungus and I am hoping now………..w/ this new improved hand circulation that those nails will improve and start to grow out and look somewhat normal again.

They are already starting to look better. Go figure………..stem cell results we could possibly see!!!!! It’s still early and the nails have a way to go……but who knows?

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One more potential improvement that I am monitoring may possibly be muscle spasms.  It is still too soon to tell.  With exercising in the past, I would experience spasms in the legs.  I’ve always had muscle spasticity (muscle tone) after a workout …but I also had leg spasms (a random jerking  motion in the legs).

I have not noticed any spasms since the transplant. I still get the spasticity though.  Who knows?  It’s still early.

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Some have mentioned the fact that I had only received 19 million cells.  I had previously reported that others had received more.

 

“I though you were supposed to get more?”………..

”Will you have to go back?”….people asked me.

 

I was curios myself ……..so I asked the Professor and this is what he had to say:

 

Dear Todd,

            We took a good number of bone marrow cells and the final number of cells we inject depends on the number of cells harvested which varies from patient to patient.

Who told you that it is the number that makes the difference? (It was my mother-in-laws fault….LOL)

It is never like that in stem cell biology. The number of true stem cells is even smaller that what is injected. In stem cell biology it is not the number that counts and there is no study that shows correlation between the number of cells injected and the outcome. I have been in the field of stem cell therapy for more than 30 years and never saw any correlation. Some of our greatest success stories are with patients that got smaller than “normal” number of cells. The final cell number was never our main concern – it is the intensity of the multi-potentiallity that counts.

Professor Slavin

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So there you have it…….not a whole lot to report but we knew it was going to be baby-steps getting  back to walking anyway.  I’m looking forward to the rehab and I am thinking each day as to what I can be doing to get stronger.  I’m glad I took some time off work….as right now I am not yet strong enough to return……but things are slowly getting better.

Let’s just hope they continue until I can “ditch” the cane.

Be Well

Todd

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