Day +115. All is not so well

[rar]

No news is good news. Too bad that is not the present situation.

At the end of Sept. my chronic Diarrhea got worse and I ran a fever. I went to the ER. Triage took one look and was in a bed in less than 5 minutes. A bunch of tests found c.diff. Everyone entering my room had to wear a hazmat suit. Standard antibiotic for c.diff did nothing for the symptoms. I was put on a high power (and high price) antibiotic designed for c.diff. $1361, but $8 from the VA. Symptoms unchanged. New test for c.diff showed not present, or cured. Nobody had told my intestines. We had been getting ready to go home. While in the hospital our apartment evicted us in favor of a more needy patient. In-spite of feeling really crummy with BM 10 times a day I was declared cured and should go home. We didn't feel up to moving twice so we went back home-home. 3 days later I was in the local ER. This time it took 10 minutes to admit me. A bunch of negative test results lead them to try a colonoscopy and a endoscopy. Colon beat up due to overuse. Try MoviPrep with severe intestine cramps. They found a bunch of things but nothing to explain symptoms. A number of skin problems that I had been pointing out and ignored suddenly became GVHD after a week and a half in the hospital. They say prednosone will cure my symptoms and I will be sent home in two days. CBC numbers bouncing from critical low to normal. Engraphment: Sept 15th CD3: 70% donor, CD33: >95% donor, CD56: >95% donor. 95+ on two lines is very good. 75% is considered as minimum so 70% is mixed news.

Ray

[Cheryl C]

Very sorry to read what a hard time you've been having, Ray. I wish you a speedy recovery. Praying for you and all our Marrowforums transplant friends.

[bailie]

Ray, I'm sorry to hear of your setbacks. Thank you for the information, it is so important for us who are days behind you.
I wish you the best in the coming days.

[Whizbang]

Ray,

Will be praying for a quick and thorough recovery for you....

All the Best, and May God Bless...

[DanL]

Ray,

Sorry to hear about the current challenges you are facing. Prednisone has a lot of side effects, but is pretty good at knocking down GVHD in most cases. Your doctors might also look at Budesonide (Entocort) for the gut issues, this worked within a couple of days for me when I started taking it. The doctors may favor prednisone if you have GVHD in multiple locations as Entocort is more targeted to the gut.

As with Dave, Bailie, and Cheryl, I am sending my best wishes for your recovery.

[amyangel]

Hi RAR ,
Just want you to know that I have been thinking about you and praying for you everyday .
Sorry to hear about the few bumps in the road look to God and take hold of his hand and he will see you through .

Stay Strong my new friend... You have so many people praying and rooting you on !!!
Make them listen to you Rar ... keeping telling until they listen .... I asked that to about Amys rash or so called hives But I tell them everyday ... with Amy she is always so outside the BOX with everything when it comes to health .

one day I took her in and she had the hives on one finger lol Dr. just rubbed there heads never seen anything like it before lol the next day it was a different finger and than a knuckle .they just scratched there heads and said lets just watch it ...lol and poof it just went away . Hang in there my friend... Remember were right behind you!!

[johnwc]

RAR
Hang in there. There are so many of us in that boat, or coming up to that boat so, for me, it is very help to be armed with more info.
What disease do you have? Where are you? How old? What's the quality of your donor?
We are all swimming in the world of uncertainty and impermanence.
John in Portland, Or

[rar]

I had MDS RAEB II. I a SCT 10/10 from my sister at age 73. I have been in hospital for 3 weeks with stomach cramps and extreme diarhia. I have been cured from c.diff. Treatment for GVHD and CMV.

[sbk007]

johnwc,
I find the "search by user name" very useful when trying to put together the pieces of a given individual. Its at the top of the page when you log in. At the top of the page there's a Search widget and from there you can search by username. Just by the nature of these forums its easy to create many threads. Then it becomes cumbersome trying to put together the pieces.
On another note different disease types have different outcomes (statistically). While the transplant process might be similar they're not all the same. Hope that helps and best of heath to you.

Ray is trooper, a distinguished engineer, and as such provides great detail and a wealth of info. I wish you a speedy recovery as you battle this bump in the road.
All the best,
Steve

[Birgitta-A]

Hi rar!
Hope you will manage the CMV and the GVHD diarrhea too!
Kind regards
Birgitta-A

[kyis]

Wow Ray,
What a battle. Stomach issues are brutal and C-diff can just be off the charts. My aunt had it and I was scared to death that I had been with her in hospital. It is very contagious and certain strains are anti biotic resistant. I'm so glad your doing better. Your an inspiration

[amyangel]

Hi Ray ,
Hows that big bump in the road going ? Prayers for you my new friend .
Being in the Hospital is not fun ... keep your head high God is on your side !