I wanted to start this post off by putting things into perspective.
Released from hospital: 12 days ago
Been home: 9 days
So I'm still freshly out of a very intense chemo treatment to stop my autoimmune disease. As I was taught by the transplant support group, this recovery is not linear. It is not similar to having surgery and seeing gradual improvements every day. A very few lucky individuals have experienced this, but it is not the norm.
The norm is: lots of ups and downs, good days and bad days, progress and regression. One day I may complete all my PT and exercises, have good energy/appetite and the next day I sleep 15 hours of the day and experience severe nerve pain. I have destroyed my faulty immune system and asked it to rebuild, this is not an easy task.
The first week has been harder than I anticipated. While I knew of the possibility of old symptoms coming back I wasn't expecting all of them my first week home. Numbness, weakness and nerve pain decided to come back with a vengeance. I am going to request a half dose of IVIG next week.
The clot pain has gotten much better. They did say it can take the body up to four weeks for the body to dissolve a clot, and we are just about there.
My brother was here last week to help out, thank goodness. This made my transition home so much easier. He accompanied me on my daily walks around the block in addition to doing everything else under the sun for me: laundry, meals, dishes, unpacking, making the bed, trash duty.
The regimen here is strict. Sponges in the dishwasher each night, all hand towels rotated daily. Daily Lysol wipe down of counters and all things fingers touch. I cannot take out the trash. My diet is a neutropenic diet, which is strict very different from my pre-transplant diet (Paleo = lots of meat and fresh veggies). Also, I wash my hands after I do just about anything, which leads to needing a lot of lotion-so dry! Shout out to Eleni on the Coconut Oil recommendation!
My sweet boy Duke is not yet home either do to the strict rules around pets. I hope to have him home in a week or so as I get stronger and have more energy. I haven't seen my pup since July 9. Thank you Jodie and Ken for giving him a loving home for the time being.
I have to get labs weekly for the first month. We went last Monday very early before the crowds. Most labs came back in good ranges, but they will likely drop quite severely in today's labs. Once the numbers drop I have to be very careful not to catch infection. Sepsis/septic shock is a real danger for us transplant patients. It is why I am a soap, hand sanitizer, gloves, Lysol wipe, face mask ninja these days.
Germs = the enemy!
I'm riding the exercise bike daily, walking laps around the block and doing the take home PT I was given from the hospital. Naps are a regular thing, anywhere from 2-4 hours each day. If I happen to sleep really well a particular night I can get away with a one hour nap.
A home health nurse will come to assess me and assign a physical therapist to begin arriving. I am excited about this. I am a huge advocate for PT.
I'm practicing patience which is very difficult for me. Those that know me know I want to be everywhere and doing everything on my own. It is not to be right now.
I made a promise to myself to see this through and not take a day for granted if I was given this treatment. So while it may be frustrating, I will stick to my schedule and work hard to get my strength back, as much as my body will let me.
Thanks for the calls, texts, emails, dinner drops offs, cards....they really do brighten my day. I may not be up for chatting most days.....but it doesn't mean your message didn't make me smile. I have an amazing support group of people cheering me on.....it really DOES push me on the days I tell myself "I don't wanna!".... (yes three year old Steph has visited).
my reminder of my supporters!
VISITS: I will likely be up for visitors in the coming weeks. Just please understand the rules for visitation:
1. You have not been near anyone with or had yourself a cough, cold or infection in the last 30 days.
2. You will be asked to wear a mask and use hand sanitizer upon entering.
3. There will be no hugs or handshakes hello.
It is very important that I not catch an infection in the first three months.
Considering timing of release I'd say I'm doing pretty good and things seems to be going as expected.