Days since transplant: 49
Sorry this is a long one.......
Setting realistic expectations:
I wanted to spend a moment explaining the expectations from this treatment. There tends to be a misconception of "I thought this treatment would take care of that/cure you/make you better" so here is my feedback.
- It is not a cure. It's only goal is to stop progression of my CIDP. There is a lot of damage from the disease that may not resolve.
- If I am lucky to see improvements in functions I have lost, it's a bonus.
- May continue to: have limitations from the damage, need my cane on occasion.
- Will continue to have unpredictable good/bad days. Bonus: no longer have to maintain stability with infusions every two weeks.
- Most noticeable improvement will be seen at 6 months, February 2016, when I head back to Chicago for a follow up. Healing can continue for up to two years (Aug 2017).
Road to remission :
Another point, is that while my treatment (HSCT) is referred to as a "stem cell transplant", it's really a chemotherapy treatment that uses stem cells to help reboot the immune system. I like to make this clarification because of all the "non chemo" stem cell treatments being offered at $15k a procedure, promising remission. They will not produce disease remission like HSCT does. As we say in our support family, "no chemo, no cure", because it's the chemo that halts the disease.
Visit here to learn more about the program at Northwestern
Limitations that remain:
- Numbness and weakness in legs, feet hands. Right side far worse than left. Motor function is ok. The sensation in my fingers/hands has not recovered much, whereas I have gained a bit of sensation in my feet.
- The hand weakness has caused me to sprain both thumb joints. My physical therapist showed me how to use athletic tape to stabilize them today.
- Very difficult to hold a pen pen to write, typing on a laptop etc. Don't get me started on opening pill bottles and jars or starting a new roll of scotch tape.
- Foot drop in the right foot, which is difficulty lifting the foot up towards the shin. Looking into special AFO (prosthetic brace) to help.
- The fatigue has gotten better, but does still require a lot of rest or naps daily depending on how much I exert myself. When the fatigue hits, I go down quickly.
- My tremors are no longer a daily visitor. It was strongest in my right hand, head and was starting in the left hand when I went to Chicago.
- Hormone changes have caused insomnia. (I went from 10hr to 3 hr) I'm now averaging 5-6 hours of sleep....still needs improvement.
- Less nerve pain in feet allows for walking/standing for longer periods of time more often (not everyday). I can comfortably walk 1.1 miles around the block without crying.....yay! The pain is still present, especially if I overdue it.
- Hair is growing in, 3 weeks sooner than expected.......:)
* I'm so grateful for this procedure. I haven't had an IVIG infusion since mid-July. I can confidently say that my disease has stopped actively attacking my body. Hooray!
Other Misc. updates:
- The asthma (from last week) is still with me. Using my inhaler twice a day, no improvement.
- Will be scheduling in-facility outpatient physical therapy. While I wasn't able to find a therapy pool, I did locate a rehab that focuses on Nuero disorders
This weeks highlight:
Friday was a special day. The beau took some time off so we could have a fun day, pretending I am not a sickly recovering patient. He took me to the Berkeley Marina (pier unfortunately closed for repair), but we still got a great walk in along the bay. Weather was perfect and it was nice to be out doing "normal" things.
Thanks babe, this day was quite special. Thanks for not running for the hills when things got a bit crazy.
Thanks Ola for letting me reschedule our visit to have this day.
Many have offered to come visit and I have not confirmed a date or time. Please accept my apology for that. There are a few reasons for my avoidance to schedule:
- My days are unpredictable and it causes me (wait for it) ........social anxiety. For those of you who know me socially, it's like saying that the sky is purple & clouds are green/orange striped.
- I dislike and feel guilty when I cancel plans, and because I am a high cancel risk, I end up avoiding the planning altogether.
- The visit may need to be cut short if I am overwhelmed with pain, fatigue etc. ..insert more guilt
Know that I want visitors more than you can imagine. If you are completely ok with last minute cancellations or coming all the way here for a potentially short visit, then bring it on.
Reflection & Gratitude
My spirits are getting better with each passing week (my impatience creates frustration). I'm learning to be patient with the physical limitations, while processing the emotional side.
I haven't really sat down to breathe since March 2014. It has been a whirlwind of crazy, lucky, sad, stressful, devastating and wonderful.
- My grandfathers ailing health in Arizona (he passed in Nov.) - March 2014
- Diagnosis May 2014
- CIDP progression & IV treatment every few weeks July 2014
- Fears that I would have to take disability and quit my job
- Possibility of needing a wheelchair in my near future
- Falling in love
- Application for treatment Jan 2015
- Evaluation (Chicago) March 2015
- Pre-testing (Chicago) May 2015
- The procedure in Chicago July 2015
- Home for recovery
All this reflection has created a large space of gratitude.Gratitude carries you quite far, even on the worst of days.
- Learning how amazing my friends are
- Creating new bonds with my family
- New friends (HSCT/CIDP community shout out)
- Giving back as a mentor in the HSCT/CIDP community
- Appreciating little things I took for granted, giving away what I don't need
- Opportunities to educate and advocate
Advice I would give anyone going through a rough situation (health, family, workplace, financial etc):
- It can always be worse
- Focus on what you do have
- Choose to be an advocate and fighter, not a victim
- Thank those that support you, let go off those who do not and any anger toward them
- Don't brew the "why me" anger
I have high hopes for the weeks ahead. Go out there any make your next week awesome too!