Saturday, June 27, 2015

A message from Steph

As I prepare for my journey to Chicago I think about how thankful I am. Thankful I got into the trial and for the people in my life that have provided unyielding support and love through it all. Whether it was accompanying me to initial testing for diagnosis, sitting with me through treatment, understanding additional PTO days at work, dropping off soup on bad days, sending me encouraging messages of prayer and love, and finally offering to be with me in Chicago for this great opportunity. Thank you from the bottom of my heart for walking beside me on one of the toughest experiences yet. Your support and love will get me through anything! No need to name names, you know who you are.

Tuesday, June 23, 2015

The treatment (HSCT)

What is HSCT?

Hematopoietic Stem Cell Transplant attempts to restart your immune system so that it stops attacking your body. Chemotherapy destroys and wipes out the faulty immune system. You healthy stem cells that are transplanted back into the body are "wiped of the attack mode" they were assigned. The new cells go where they are needed to repair and grow a healthy new immune system. This is the primary function of stem cell re-infusion, to rebuild the new system and expedite recovery. The stem cells aren't the cure, the chemotherapy is. As we say in our support group "No Chemo, No Cure!".

While this isn't a true "cure" it is a successful method for remission, which for most of us is all we could ask for. We hope to stop progression and work to getting our function and abilities back that were lost due to our disease.

Treatment Purpose

This treatments goal is to reset my immune system so that it stops attacking my nerve myelin. If successful it would provide remission from the immune attack, therefore halting progression of the disease. 
Reversal or improvement of current symptoms is considered a "bonus". While something certainly hoped for, I would be grateful if we halt it's progression forward. Several veterans of this procedure have seen varying degrees of improvement over time, with full treatment results seen at the 2 year mark post HSCT completion.

Schedule for Transplant

  • Pretesting (complete)
  • Mobilization (2 weeks): Outpatient. One day of inpatient Chemo and  one week of shots to stimulate stem cell production.
  • Harvest (1 day): All day with a blood filtering machine that collects stem cells via jugular catheter
  • Inpatient First Leg (1 week): Inpatient receiving Chemotherapy and rATG (rabbit derived immuno-suppressant) to wipe out the bad immune system
  • Day 0: Referred to as our new "birthday", we receive our collected stem cells back, which begin to rebuild the immune system
  • Recovery (9 - 12 days): The remaining days are spent inpatient, waiting for blood counts to reach safe levels for discharge

Recovery Time (at home)

  • Long term recovery (4-6 months): Spent working on healing and strength, in preparation for my 6 month check up in Chicago. Retesting my nerves will show the improvement thus far.
  • Ongoing checkups: after my 6 month checkup, i will return to Chicago for every one year anniversary until the 5th year. Total healing benefit is seen at the two year mark

Auto Immune Diseases currently treated by HSCT in Chicago:

These are just a few of the AI that HSCT is used to treat: Multiple Sclerosis (RRMS), Systemic Scleroderma, Systemic Lupus, CIDP, Device Disease (NMO).

Want to learn more?

Saturday, June 20, 2015

The Diagnosis (CIDP)

This is my journey to beat CIDP with a stem cell transplant. I will be in Chicago for six weeks, a combination of inpatient and outpatient to stop progression of my disease.

First, a little background on my diagnosis:

What is CIDP?

CIDP is a chronic inflammatory disease that attacks the peripheral nervous system. It is sometimes referred to as a "cousin of MS". MS attacks the central nervous system, creating lesions on the spine and brain. Whereas CIDP attacks the nerve lining (myelin) of the peripheral nerves. Symptoms vary by individual in both type and severity. Some can walk unassisted, some with an aid (cane/walker) and some are wheelchair bound.

My symptoms and treatment

Symptoms began in 2012 all of which were dismissed by doctors. In 2013 further tests and physical therapy were not of much help. Finally in 2014, with the right neurologist, I was properly diagnosed and began treatment ASAP.

With my bi-monthly IVIG treatments I am able to walk unassisted for most of the time (albeit with a goofy limb). Although "Creedence" my cane comes out on occasion. My symptoms include; severe nerve pain; chronic fatigue; numbness in my hands, forearms, feet, lower legs; muscle spams and tremors in my hands and head.

My treatment plan is IVIG infusions (every two weeks) as well as daily doses of Prednisone (steroid for inflammation) and Gabapentin (nerve pain). The infusions have been rough the last few months, causing phlebitis (painful inflammation of the veins),  migraine headaches ad severe fatigue. Without my infusions i am numb from the hips down and have trouble with balance and walking due to an inability to feel my feet. In addition I lose all feeling and strength in my hands, leaving them fairly useless.

What is IVIG?

Intravenous (IV) Immunoglobulins (IG). those who donate blood plasma donate my medicine. One dose can have anywhere from 1,000-10,000 donors of plasma. Thank you blood donors!! There are two theories on how it works: a) the good IG in the plasma, attack the bad ones, which delays attack b) that the good ones go in and distract the bad ones from attacking me. Either way, it certain does stabilize my symptoms and I am grateful for donors.

In recent months I've had issue with treatment due to phlebitis (vein inflammation) which is very painful. Swelling and bruising of my hands and wrists has become a norm anymore. In addition there is the severe fatigue and migraines that accompany IVIG.