July 28, 2013:
During the discharge process, Amy was very clear on what my medication regimen would be. I will be on an antiviral medication, Acyclovir, for 12 months. I will be on an anti-fungal medication, Dilflucan, for 3 months. I will also take an antibiotic, Bactrim DS, every Monday, Wednesday, and Friday for 3 months. Last she prescribed Alpha Lipoic Acid to help with nerve regeneration pain. Amy also gave me a prescription for a physical and occupational therapy evaluation. So, I will be at the mercy of my insurance company on how many visits and how often I can get therapy. The good news is I am sure that most of the things I do at therapy I will be able to do some version of it at home. As I sat there with Amy going over what I can do and what I cannot do I became more comfortable about leaving the hospital. However, I am asked to not have any elective surgeries for 1 year, not eat at salad bars and deli counters for 3 months, no swimming in public pools for 3 months, and no cleaning/laundry/home remodeling/gardening/yard work for 3 months. She kept reassuring me that I should do what I was comfortable with. That is why I feel it is important to have a Plan for Recovery.
Throughout the entire stem cell transplant process virtually every
detail was planned out until now. Back in the Spring I was sent a
calendar that outlined the dates and times of all of my appointments and
hospitalizations through July. Every i was dotted and every t was
crossed. I knew what medicines I would be taking and when I would be
taking them. Now, I have been discharged and the rigorous schedule that I had
been accustomed to is also gone. I have developed a "now what?" feeling.
To combat this feeling of uncertainty I have developed a rough 1 year plan for my recovery. For at least the first 3 months, I will only be attending therapy and going for my lab draws. I would prefer immediate family to personally visit the house, but others may feel free to call because I will enjoy talking with all those who have been so supportive during this journey. Visitors will be asked to wash their hands and wear gloves in the beginning. Do not bother stopping by if you are sick or have been around someone who is sick. Even if you think it may just be allergies, please don't even take the chance. I ask that visitors not be offended by me not wanting to having physical contact. Shoes will not be permitted to be worn through the house. I do not want
to even think where most shoes have been, and I don't want those germs
tracked through my house. I know that this may be overkill, but this is my recovery and I am going to take all necessary, and unnecessary, precautions.
Shortly after we return home, Ann and my daughters will be returning to school. I am very nervous about this, but we have developed a plan to help reduce the outside germs brought into our home. When they return home from school they will immediately change their clothes and wash off. Their clothes will be put in a garbage bag and carried to the basement where our washer and dryer are located. My daughters will not be permitted to have friends stay the night. I do not want to offend anyone, it is just I want to allow myself time to heal.
I will be having my blood drawn weekly to see where my counts are. Between the 3 to 6 month mark, considering my counts are good, I will begin to allow friends to visit. I know this will be about right in the middle of winter, so if you are sick stay away. At this time, I am also looking to venture out of the house a little more. I will mostly just visit with family in the beginning. I am still going to avoid large crowds and I will always be armed with my hand sanitizer.
It will be during the 6 to 12 month range that I will begin testing my limits, as long as my blood counts continue to be normal. This is where I am going to kick off the training wheels and start stretching my comfort levels. I am hoping that I will feel comfortable enough to go to dinner or attend whatever activity my daughters are involved in. I also want to have my foundation up and running around this time.
Please understand, this is NOT a recommended schedule prescribed by Amy or Dr. Burt. This is MY plan for recovery. I will be recovering during the Ohio cold and flu season. I am taking the steps I think I need to take to ensure that I am not taking unnecessary risks. I hope that you understand my need to heal and recover in a manner that I am comfortable. But remember plans are subject to change. "Everyone has a plan 'til they get punched in the mouth." -Mike Tyson