5 months back from The Philippines Update

Posted by on Jul 10, 2016 in Me and my HSCT | 0 comments

I have not done a good job updating my blog so I do apologize about that.
I have so much to say about the experience, but even more to say about what life has been teaching me in the last year. I hope to publish a book in the near future. Stay tuned.
I have been home for 5 months from Manila. I have only positive things to say about my time in Manila. Dr. Lopez and the staff at Makati Medical are amazing. I felt very well taken care of by all of the doctors and nurses involved. The people I encountered around Manila were helpful and kind. The one hard part is the internet service can be spotty at times. I  also want to say thanks to my dear friend Bettye for giving up a month of her life to help me in Manila. Also to my sweet dear husband for coming after that to stay for the last 2 weeks, which were tough at times and bringing me home.
I came home and spent the first couple of months resting a lot. I had a few minor setbacks. I was allergic to the Bactrim first prescribed. I broke out in a full body rash. Once that was changed it went away in the next week or two. Then my skin starting flaking from head to toe. There was nothing that helped. Lotions, bath soaks, nothing but time, it took about a month to stop. Coconut oil was my best friend.
Uber was our mode of transportation while there. The traffic is pretty crazy and the prices for Uber were so reasonable. I made a local friend while I was there. Her name is Riza. She has offered her services to help people get settled and communicate for accommodations, airport transportation… Please feel free to contact me on Facebook if you are interested in her very reasonable assistance.
I have had MS over 25 years. I had progressed to SPMS. I mostly have had problems in my legs, my balance, (as of the last few years) and bladder urgency. I have always thought I was fairly fortunate. It could have been much worse in many other areas. My EDSS had slowly crept up to a 6-6.5.  After I learned about HSCT I was really driven to have it. I was accepted to the Makiti Medical Hospital.
Thank goodness for lifelong friends, and family, for the love, help and generosity they offered.
With their help, raffles, auctions we were able to reach about 40K in 5 months.   The hospital required 55K. There is another 10K when you consider the airfare, accommodations, food and meds.

We were fortunate to be able to cover the rest. It is an expensive treatment but worth it to stop the progression of this monster.
I was there a total of 6 weeks. The first 2 weeks were getting settled. Then came bloodwork, injections to produce stem cells, harvesting stem cells… then I was off for several days. We took that time and saw some of the beauty there. When I returned we started the chemo. I have to say the last 2 weeks as I received my stem cells and the ATG drugs I was a pretty sick gal. Hard to keep food down, super weak legs…
So, here I am, home for 5 months. I am feeling better little by little. Yesterday I walked better than I had since I have been home. My balance feels better which translates to easier, better walking. I feel pretty recovered from the chemo, my hair is about 1.5 inches long. Bloodwork is showing normal. I am off of the tecfidera I took last year. I do still take compounded 4AP (Ampyra) that helps my walking speed and baclofen for leg spasticity. I will say my bladder urgency is at lease 75% better with 0 drugs. Yay!!
My hope is that HSCT has stopped my body from attacking itself. I hope to get more and more function back with the home exercises and stretching I am doing. I will update again at 6months because I do feel good things happening. I am so grateful for HSCT. I truly think I was headed down and it has been stopped.:):):)
Love and Peace, Gina

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