day +188

[rar]

It has not been an easy 6 months. I have spent 3 days home in my own bed. I have been diagnosed with C.Diff, CMV,and GVHD of the gut causing diarrhea. They think they have controlled the C.Diff but not the others. The hospital wants to send me to a rehab center next week. Are they rushing the discharge? I developed the GHDV at about day 100. Does this make it chronic vs. acute? I have been quoted 90 day mortality of 20 to 50%. How accurate is this?

Ray

[bailie]

Ray, I am disappointed to hear about your situation. I know that you have such a great attitude to make this work. It is a project. I am at Day 93 and about two months behind you. Your comments about Day 100 certainly caught my attention and I thank you. I guess what we have all learned is that there are no clear/clean ways to approach recovery. Did you have many early indications about reaching the problems at Day 100? I have had minor indications with skin GVHD. My rash seems to clear up after about four days and then moves to a different location. It doesn't (yet) seem to be a problem in that the rash does not itch and barely noticeable.

I wish you the best and I really appreciate everything that you post.

p.s. Was that a "typo" of Day +188? I was thinking you were about Day 145?

[rar]

You are correct. It is day + 138. Another pathologist looked at my slides and disagrees with the first and decided that he misread the slides and I don't have CMV. My major problem is stage 3 GVHD of the gut. My facial skin is flaking off like a snow storm, but is the least of my problems.

Ray

[Whizbang]

Ray,

Keep up the fight, many people have been given a short time to live, and survived many years instead... Positive attitude, lots of prayer, faith in God, and perseverance will see you through...

Don't give into despair, do research, eat so as to minimize GVHD, and try and keep those pounds on...

All the best, and may God Bless!!! (us all)...

[Cheryl C]

Amen, Whiz!

Really sorry to hear that you are still struggling with GVHD, Ray. I am also thinking of and praying for you. Don't give up yet!

I wonder if this information could help you - http://www.express.co.uk/life-style/...-survive-chemo

[jmajjb]

Hello,
I wanted to share some thoughts with you that I have been studying on the past few months. There is tremendous healing power from God and you need to pray scriptures to receive this healing power. There are many books on divine healing that will guide you. The power is in your words. Speak life not anything negative! I can get you some names of books if you are interested in this! By Jesus stripes we are healed!

[DanL]

Hang in there Ray. To answer your question, mortality is individual. It is true that grade 3 gvhd is a very difficult fight, and gut GVHD is absolutely no fun, as I have been working through that on and off for some time. The day 100 cutoff is a little arbitrary and could represent AGVHD or CGVHD, but as far as I am concerned, it really doesn't matter, both are challenging and present discomfort and difficulty to you.

It would be great if the CDiff can be fully controlled so that you are only fighting the GVHD. There is a kind of gross procedure, but it has been effective in many patients where they do a fecal transplant to cure cdiff - not sure if that is necessary in your case, but it might be something to bring up.

Keep fighting, getting rest, eating, exercising, keeping positive.