Am I being discharged too early?

[rar]

I had SCT 132 days ago. At first it went good. Somewhere about 2 months ago I developed diarrhea and was very sick. Originally I was diagnosed with C.Diff, CMV and GVHD. I have been in hospital since then. Various treatments seem to have to have cured the C.Diff and CMV. So I have GVHD stage 3. It has destroyed my gut. They have tried various treatments without desired effect. They put me on IV feed. Waited a week and put me on tube feed and regular food. I had 10 bouts of diarrhea in 2 hours. Now they want to send me home on IV feed, wait a couple weeks on home IV and then introduce tube feed and see how I react. Did they introduce food too quickly last time? Are they discharging me before I am ready this time? Any one else with similar situation? Due to medications and laying on my back for the last 1.5 months I am dizzy most of the time and have lost a lot of muscle mass.

[DanL]

Ray,

Not sure if you are being released too early, I think it depends on how much care you are able to receive at home. I know that being at home feels good, even if you have to give yourself IVs and other treatments to stay well. I think that physical therapy sounds like a must in your situation though to get the muscles working. I think that will probably help with some of the gut symptoms as well, as moving always seems to help me, even if it means that I move a little bit and then end up in the bathroom a few minutes later. I just generally feel better when I am able to get around more rather than less. I have not had level 3 GVHD of the gut though, so I cannot say that I fully understand what you are experiencing.

As always I pray for your strength and victory over this illness.
Dan

[amyangel]

Hi Rar ,
I know this might not help, but are you a milk drinker ?
I switched Amy over to lactose milk and it really seemed to help .
I would be happy to be going home , but of course we have done everything outpatient and so I already know how to manage the meds.

That was the hardest thing for us when we first got home in May 2014 , But now I have been doing it for such a long time it comes natural .

We did have a nurses come into the home to do labs for about a month and I loved it , but to be honest I was happy to see them go too
Going home is scary , but when we got there I knew Amy would not lay in bed all day like the hospital has you doing . That right there will be huge for you Sitting Up in your own chair ! Ahhhhhhhhhhhh healing , healing , healing .. Walking to your own cupboards to snack ahhhhhhhhhhhh wonderful! You dont have anyone pushing things on you anymore and best off all NO more beeps from the IV pole .and nurse checks every two hours of interrupted sleep .. Be BRAVE YOU HAVE GOD ON YOUR SIDE

I'm so happy for you that things are going ok . Take one day at a time . And Thank Jesus everyday no matter what kind of pain you are in . I have Amy shout it all day long . Its hard for me to comfort her pain kissing does help ,but I do it anyway . and so we just Shout Thank you Jesus !! He is our creator and as tough as it might sound he knew all this was going to happen before it did ,But I know he has a plan . Open your heart and ears and listen.

Tomorrow Amy and I found out if her body took the graft ... And if not we have to do this all over again in Jan 2015 . The test they are looking for is call the chimerism. It can tell if she has more Donor cells in marrow or more Amy cells yet .

My prayers are with you as you take the big next step and leap of Faith GOING TO HOME SWEET HOME ! Please think about us as well and we hear about test results at 8:30 am Monday morning .