Wednesday, July 20, 2016

Day +100 (July 20, 2016)

It's been quite a while since my last post, but truthfully, it has been fairly uneventful. Frequent posts would have been quite boring for everyone.  :-)

Today is Day +100 since my stem cell transplant.  Fortunately for me, I have tolerated it fairly well with minimal issues.  One issue I did have was I contracted conjunctivitis  (pink eye). I was letting my guard down too much and put myself at risk by being in crowded areas, not wearing my mask, etc.  Lesson learned. With that said, I saw having pink-eye as a good sign that the HSCT procedure was working.  I had not been sick in years because my immune system was in over-drive, and it appears that now it's not.  

May 10 vs July 10

I was looking back on my last post from May 10 and thought I'd update where I am now compared to then.

  • Vision
    • May 10 - Much better
    • July 10 - Still good
  • Fatigue
    • May 10 - Better
    • July 10 - Experiencing some issues over the past month or so.  Not as good as it was in May
  • Heat Intolerance
    • May 10 - Gone away
    • July 10 - It's back.  I will just be sitting and all of a sudden my face/neck will turn bright red and I have to get to a fan or in a cold shower fairly quickly. I can't be outdoors very long. This is disappointing. 
  • Walking
    • May 10 - No improvement
    • July 10 - Some improvement.  I'm able to take the dogs for a short walk SOMETIMES without feeling my legs getting heavy...  but then sometimes they still do get heavy and slow.  
  • Urinary Frequency
    • May 10 - No improvement
    • July 10 - No improvement
  • Numbness/Tingling
    • May 10 - Slight improvement
    • July 10 - Seems the same.  I am still feeling the tingling/numbness mostly in my hands but not all the time.
  • Brain Fog 
    • May 10 - Comes & Goes
    • July 10 - I'm not seeing much improvement over May 10 which is tough for me. If I focus hard on anything, I get brain fog pretty bad.  It feels like my brain is heavy and it's hard to explain, but it feels like swimming motions in my head. Since I'm not working, I decided to start drawing again to keep myself entertained. Even this activity caused brain fog issues.
While I'm seeing some slippage in areas, I'm still not discouraged.  Previously, one of the biggest clues that I was on the decline, was the inflammation in my eyes would come on strong causing me to start losing my vision FAST.  I used to have to take Azathioprine (Imuran) daily to keep the eye inflammation down. Today I am not on ANY drugs whatsoever and my vision is as good as it can be. I have quite a bit of scar tissue in my eyes, so it will never be perfect. 

Follow-Up Rituximab Infusions 

I went back to Mexico in June to receive my Rituximab infusion.  I tried to get it done here in the states, but my insurance denied and it would've cost between 12 to 14 thousand per infusion.  In total I need 6 infusions.  So, we packed up and went back to Mexico to receive my 2nd infusion.  The first was given at the end of my HSCT treatment. From there, I brought the Rituximab and the Hydrocortisone for the next 4 doses back with me as I have found a nurse that is willing to give me the infusions at my home. One thing that was causing me a lot of stress was the fact that you have to have a medical license to buy Saline solution in the US. I had no idea!  I am shocked you need a license to buy salt water.. unbelievable. My suggestion for anyone bringing back the drugs to the states to do the infusions themselves, get Clinica Ruiz to include the Saline and write it on the prescription documents to avoid running into issues. 

What's Next

My local neurologist, Dr. Kosa, whom I love, is really pushing me to go to see Dr. Bowen, a MS specialist in Seattle. I was confused by the push to see this other doctor, but Dr. Kosa stated that he thought I should come up with a back up plan in case the HSCT procedure does not work. He said that he was very impressed with Dr. Bowen, who was involved in some of the original HSCT trials years ago and apparently travels all over the country talking about the newest MS procedures/drugs/possibilities. Dr. Kosa said he had talked to Dr. Bowen about me and that he was very familiar with the Clinica Ruiz protocol. I'm fairly impressed that my neurologist has NO EGO issues whatsoever and is really looking out for my best interest. I have an appointment in mid August in Seattle and will update everyone with "the plan".

Final thoughts

George Goss has a great image to help people understand what the HSCT recovery period is like. His image is actually better than what I have here, but I couldn't find it. The concept is the same - you have ups and downs through the journey, but be patient. I need to always remember that my recovery will take up to 2 years and that the goal of HSCT is to STOP the disease. Any added improvements are a BONUS!!

 Hematopoietic stem cell transplant, HSCT, Multiple Sclerosis, MS, Myelin, Inflammation, Clinica Ruiz, Northwestern University, Chicago, Mexico, Israel, CTCI, Italy Careggi, Russia, Maximov, Avonex, Betaseron, Copaxone , Novantrone , Tysabri, Gilenya ,Tecfidera, DIAD, MRI, EDSS

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