That's very good news, Jim. Hope you continue do do well!

Jim
 

Great news on your release!

Best regards,
Debbie

Thanks, my doctor said I "cruised" thru it with little complications. My WBC jumped from .7 to 7.4 over my last 4 days. I had not been above 2.5 for many months. Now at home for recovery :)

Jim
 

My husband is doing the same, his diet is still very limited, but hopefully that will increase in the next week or so. He had his first follow up visit today after being discharged on Friday, doc says all going according to schedule. They'll recheck him on Thursday and then again the following Tuesday. Neupogen worked well for him after induction therapy and then again this time.

Debbie

I am coming along with no major issues so far as of day +33. WBC 4.2, ANC 2.2, Platelets 100, HG 11.8, HT 32.7 :)

Bone Marrow Biopsy scheduled for Nov 12.

Great news, Jim! Keep it up. :)

Congrats Jim! I'm very very happy for you!!!! keep it up!

Hugs, Cindy

BMB showed that I am "completely" donor cells. Now, doctor did say medically speaking "completely" means 95% or greater, but whatever, things are looking good. Still no major issues, no graft vs host, still waiting for hair to start growing more, just a lot of fuzz/stubble on top but more in back of head. I am at day +51 now :cool:

That is great that you are doing so good. Have a Happy Thanksgiving - it really is a thankful one for you!! Take care

Happy Thanksgiving, Jim! Super that you're doing so well!

There was an interesting show on PBS Frontline about end of life health care. You can watch the video online, seems like most of the patients and doctors from this story were on the Bone Marrow Transplant Unit.

http://www.pbs.org/wgbh/pages/frontline/facing-death/

Now remember, this show is about very serious end of life health care issues, not a story about Stem Cell Transplants. It just happens all the people involved have had Stem Cell Transplants as treatment to aggressive disease.

Thank you for the link. It was a rather discouraging piece, all in all, though it raised some very important issues, and the commitment of the doctors involved was evident.

Just a little update. I am just past day 100 and have not had any complications to speak of - No GVHD, no infections, no post transplant admissions to hospital - and my two Bone Marrow Biopsy's since transplant have been clear.

Plan right now is to return to work on Feb 1, 2011 (I am computer guy, so I also have ability to work from home if fatigue becomes an issue).

Question for those who have gone through day 100 to day 365...what kinds of restrictions did you continue to follow?

Congratulations, Jim! That's great news!! Let's hope this keeps up, you're the model patient!

Let's see, thinking back to post-100:
- I still kept away from public transport at busy times (so no crowded tube trains or buses at rush hour)
- If someone in my small office was ill, either they worked from home or I would (I'm in IT, too)
- I kept away from small kids as much as possible, and DEFINITELY not if they'd just had vaccines or chicken pox (we had a 3 week quarantine period to observe before we could visit friends whose kids had just had chicken pox!)
- I still couldn't eat sushi or raw egg products

Hmm, I'm trying to think of what else, but mostly I remember that period as a whirlwind of hospital visits every single day without much else, but slowly returning to the outside world - I remember we celebrated my Day 100 with lunch in a nearby restaurant, and that was the first I'd been in public that wasn't the hospital!

That is very good Flamingo Jim.
Returning to work is very important.İ suppose risks are minimum for you at home.
We have still infection risks,so you take care yourself at the moment at outside.i waited 12 months for working and i still work parttime.

I advise you dont cut your contact with your transplant team.

Definitely will be working with my transplant team for quite a while still. Right now I see the doctor twice a month and have labs once a week (still have central line in, hopefully get that out this month).

I have been out and about at restaurants and stores (usually go when it's not busy) and walking around park when weather is ok.

How about springtime things like gardening, mowing lawn, and bike riding/hiking? What are your thoughts for things like that? By then, I should be around day +170.

Congratulations on passing your 100 day milestone, Jim. That's fantastic news, and it's great to hear you're enjoying life.

Great news!!!! It's good to see you planning for the spring. Regarding the yard work and gardening. I would proceed with caution when working with dirt because of potential molds. Mulch, leaves and dirt can have high levels of mold and I would stay away from that for the first year if you can. You can always wear your mask but breathing gets difficult.

I have also stopped using chemicals on the lawn. If you use them, have someone else apply them.

I may have jinxed myself a few posts earlier by saying I had no problems. My liver enzymes started rising and looks like I have liver related GVHD. They put me on prednisone. The transplant team is not worried, they say this is a common complication.

Anybody have any thoughts on being on Prednisone (40g Daily)? I know it is a rather powerful steroid and you have to be weened off it once the regimen is done.

Prednol is needed for decreasing the liver enzymes.i use prednol 4 mg also but now 15 months from transpant.i remember high dose prednol using get some side effects like moon face,to get fat at upper body,musle weakness and be care of your diabets.i advice you measure your diabet score.i had some diabet problem when i use 32 mg nearly for three months.
Do not afraid prednol but take extra care.When prednol dosage decrease to 8 mg everything is come back to normal.

tapering Prednisone
 

My taper-off rate was down 5 mg per week when it was down to 50 mg and that was OK for me. But my initial dose of Prednisone was quite a bit higher than yours.

The latest is they bumped my Prednisone up to 120mg/day. I have been on that higher dosage for about a week and my ALT (>1300) and AST (>245) liver enzymes are still high but Billirubin is very low (.5). I have not had any side effects to Prednisone other than a very slight dry mouth.

Doctor is now putting me on 2000mg/day Mycophenolate (CellCept) in addition to Prednisone.

Has anybody gone through that similar combination?

As I mentioned earlier, other than these liver test I feel great. The high liver counts don't seem to be bothering me :confused:

My husband's transplant was exactly one year prior to yours. He experienced elevated liver enzymes also. They did a liver biopsy because they suspected his was due to elevated iron. He had had over 140 units of packed red blood cells prior to transplant for his MDS symptoms. This turned out to be the case so they began phlebotomy once a month. His HGB was over 16 so they went for it. They said that they don't usually do phlebotomy on a transplant patient until one year out, but his counts were good and they really wanted to get the enzymes down. His enzyme levels are normal now, but he is still doing phlebotomy to bring his ferritin levels down further. They never ordered steroids for him.

You asked about what you should or should not do. I guess it is common sense; what you feel you can do, and if in doubt, ask your doctor or transplant team. I don't know how your center is set up, but our doctor is an email away with almost immediate responses. I believe the sooner you can return to normal life the better your revovery. Mike attended Christmas Eve service at our church and in January of 10 began attending Sunday services again. He was just careful about shaking hands, etc. We always carry hand sanitizer.

I am sure that it is the same with most transplant patients....Mike says he has a feeling of well being now. It has all been worth it.

All the best to you and we are here if you have anymore questions!

Mary

Jim, I am Day +24! Hard to believe!

I had some kidney issues that is being dealt with well with my fluid intake. Yesterday my labs showed some fluxuation with my liver, however he is not concerned at the moment. The staff mentioned prednisone to a lady who has liver issues. Probably pretty common treatment.

Hey, maybe it will help fertilize your scalp? lol I don't think I lost hardly any hair this time.

Hang in there and keep us informed. Blessings to you. Lori

So far, I am doing pretty good on the liver problems. My ALT is now below 900, another lab next week. I post the lab results online at my blog:

http://jimschmitz.wordpress.com/about/

Hope things keep improving, Lori. I am following you on the carebridge site also :)