Happy 2nd re-birthday to me

[rar]

I had a transplant for MDS 2 years ago and I survived so far. My three doctors say that I am in very good condition. One said it is nice to see a success story for a change.

I had some rough spots in the road, the worst was 2 months in the hospital for GvHD of the gut stage 4 which kept me from eating or drinking for the 2 months. The rest of my symptoms are eyes, mouth, throat, and fatigue. I still manage to walk 3 miles a day, albeit at a slower pace. I am still on 21 drugs which are slowly being tapered. CBC numbers mostly good.

I was very happy to celebrate my 2nd re-birthday and hope there are many more to come. If I had it to do over I would do exactly the same, but bring a steam roller to flatten some of the rough spots.

Ray

[Neil Cuadra]

Ray,

Your successes have been hard-fought and you definitely deserve them.

You're still on quite a few meds two years out, but many of us know from experience how important it is to taper sloooooowly.

Happy birthday!

[PaulS]

Congratulations Ray - As you probably well know - 2 years is a huge milestone!

Do the 21 drugs include nutrients or are they all drugs to combat GVHD and antibiotics etc? Sounds like a rough bout with GVHD so it makes sense to taper slowly - but also sounds like your otherwise doing great - thanks for providing me and others with inspiration and hope!

Best wishes,
Paul

[bailie]

Ray, that is terrific!! I salute your effort. I am about a month and a half behind you so keep leading the way in a positive direction. I'm sure, if you are like me, you have learned so much that you never thought would enter your life.

[KatailS]

Happy 2nd re-birthday, Ray!
Wishing you many more .... but with a much less bumpy road :)

[rar]

The drugs include immuno suppression, anti various, sleep, eyes, vitamins, minerals, stomach. These were all prescribed. Only two of the pills were taken before my transplant. When the immuno suppress is stopped most of the others can be stopped.

A year ago I was told to drop all the drugs. 3 days after that I devolved a head to doe rash which is healed. I still have eye, throat, dizziness, and fatigue problems. This is why they are tapering drugs very slowly. Once immuno suppression drugs are stopped most of the other will be stopped. It is hard to separate drug side effects from GvHD.

Thanks for all the well wishes.

Ray

[DanL]

Congratulations on the second re-birthday Ray! You are a warrior and a champion for all who visit the forums. Here's to many more great years to come!

Dan

[Cheryl C]

Well done, Ray! I've been following your posts for years now, and it's great to read that you're gradually coming through and smiling in spite of the lingering discomfort.

Have you tried medical grade honey for your throat? http://www.express.co.uk/life-style/health/32316/Healing-honey-helps-patients-survive-chemo

[kyis]

Great news Ray!
I too have followed many of your posts, what a battle, congratulations!
Curious, I can't remember was your donor a perfect match?
Bmt or SCT?
Same blood type?

I was surprised to hear that many or most transplants do not have the same blood type as it is not necessary.

Stay the course, you are certainly an inspiration.

[rar]

Thanks for all the positive responses.

My baby sister (age 70) was my 10/10 donor. We have the same blood type. Two other sisters were also a 10/10 match. One has a different blood type. Transplant team said a blood type match was good. My three brothers matched each other but not me.

I had an adrenal stimulation test today. I failed. Prednisone for life.

Ray