[kris]

Heather,
I can only remind you every patient is different. Thus the plan of care is different. Rick has been on sirolimus and tacrolimus for his immunosuppressants. He still is on decreasing tacrolimus at 2 years. All counts were not nornal until after 16 months. That being said he was never on epogen, aranesp nor neupogen post transplant. Nor did he require any transfusions.
JUST monitoring, excellent hygiene, good nutrition, following medical advise and taking all meds as prescribed. If something didn't seem normal for him, difference in his or my evaluation of him we brought it to the staffs attention. The slightest thing.
We stayed away from infants, animals and sick people. Rick wore a mask for the better part of that time especially with every Dr appointment...sick people are in clinics and hospitals. Everyone is immunosuppressed at BMT. (Who knows what bacteria or virus someone is carrying). When dietary restrictions were lifted at day 100+, OUR ATTITUDE was "Is today different than yesterday?" No!... so let's stick with what we know. Reminding ourselves his immune system was less than 100 days. We stayed on restricted diet for nearly a year until we felt comfortable adding new foods and going out. The few times we went out I had the waiter bring a cup of boiling water to soak the utensils in. Ordered food cooked to 165 degrees, never had the salad bar, nor raw onions or lemons in water.Ww wiped the table and chairs with clorax wipes. Precautions we feel to this day has made a difference. If we feel uncomfortable in a restaurant, home or event we leave. Could it be viewed obsessive...yes. Has it been worth it mentally...absolutely. Rick is at his post MDS diagnosis self....that is a lll we can ask for. he has exchanged a terminal diagnosis for management of chronic diseases which are under control.
Heather we wish you well, every journey is different. If it feels right it is, if there is something different for yu..mention it to your doctor.