Tuesday, April 30, 2013

May is CIDP Awareness Month

I have had CIDP for over 20 years and I am just now finding out that May is CIDP Awareness Month. How sad is that? That is how bad I buried my head in the sand about this issue. I had my standard response of "it is like a cousin of MS". Once you throw that out there you will see people's head shaking in agreement. I never took the opportunity to be an ambassador for CIDP; I would have rather been one of the guys. I did not want to be that guy with the weird disease. This is not the case now. Over this past year I have been knocked completely flat by CIDP; this disease has taken away my abilities to walk, to work, and to drive; but it has not taken away my ability to fight.

In some of my darkest days I have been able to find comfort and harmony from reading the stories other CIDPers have shared. The comfort that I received from these stories made me realize the importance of sharing my story. I no longer want to just share my story; I want to bring attention to this disease.

My wife and I purchased and distributed over 300 bracelets(Thank you to everyone who helped make this possible by not only donated money, but also spreading the word). This is just a small gesture, but it sure seems like a powerful one.



Wednesday, April 17, 2013

Dr. Burt

In my eyes, Dr. Burt and his staff are amazing individuals for the work they are doing. I found an interview and article about Dr. Burt and his staff at http://www.stemcellresearchfacts.org/dr-richard-burt/ . Although this article does not specifically discuss CIDP, it does refer to the success of adult stem cell transplant on over 23 autoimmune diseases.

Hope you enjoy.


Thursday, April 11, 2013

I may look normal

 In my searches, I can across a letter that was written by another CIDP stem cell patient named Gwen Lanier. Her blog can be seen at http://cidpourjourney.wordpress.com/about/.

Reading this letter help me to realize that I am not alone in my struggles and there are others out there who are suffering too. The great thing about Gwen is she wrote a letter that describes the struggles of a CIDP patient in a way that I have never been able to. I feel it is important to share this letter, in the hopes that someone else may stumble upon this blog and find the same comfort from Gwen's words as I did.


TO FRIENDS AND FAMILY:

I look normal. Don’t let my outward appearance fool you; I am in pain. I am not the same person I was a year ago, or two years ago, or 4, depending on when it was you last saw me. I look healthy; I am not.

My condition changes from day to day, sometimes even hour to hour. Today I might be able to walk with you a few miles; tomorrow I may not even be able to get up off the couch. A week ago I felt almost human; next week I may feel like something less than what the cat drags in. I may want to do all the same things I used to: to work out, take long walks, socialize, keep some semblance of household order, but I may not be capable of it.

If I say, “maybe later”, please understand and accept this for what it is which is not an excuse. It is a reason. I don’t enjoy my new limitations; I hate it. I might even be physically able to do today what you wish for me to do, but if I know without a shadow of a doubt that pleasing you will mean for me later an incredible amount of pain, I must say no. I’m not lazy. I just hurt.

I absolutely do not want pity. This is no reason to feel sorry for me–life is not perfect, and life happens to us all. This is the hand I have been dealt, and I intend to play it out. I don’t blame the world for what I suffer, I don’t rally against God. This is no one’s fault. Not even my own.
I do not crave attention. I didn’t decide one day that I was tired of living like a normal person, and that the means to a life of never again having to work, having my whims catered to, having friends and family treat me specially involved creating symptoms no one could see under a microscope. I loved my life the way it was; I was never depressed and I had plans. This isn’t a cry for your attention. It just IS.

I don’t feel sorry for myself. Why should I? Things don’t always work out the way you’d like them to–this is one of those times. I can live with who I am now. I may not enjoy each day as much as I used to, but I still live for each day, and embrace whatever I can get out of life. Pain is my companion… but pain is not me.

The truly hard part–if you cannot accept me for who I am now, I am sorry for you. I won’t waste precious energy chasing after you to cling to a friendship that probably wasn’t as strong as I had once believed it to be. I cannot force myself to readopt who I was before and reassume the same roles. In this–preserving myself and my state of mind–I have to be selfish. If you cannot accept that I might not be able to contact you every day as I did before, or engage in the activities we once did, whether it was training together and working out together or just bowling, then do me a favor and let’s quietly part ways with no ill feelings.

My life is going in new directions, and for me that might not be a bad thing. If the changes I have gone through disturb you, hold your criticism. I don’t need it. I don’t want it.

Life deals us all a bad hand occasionally. This is my turn. It happens, I accept it. I hope that you can, too.

Wednesday, April 10, 2013

CIDP and Emotions

For most of my life I have not talked a lot about my CIDP. I felt like if I did not talk about it, then I did not have to think about it. And if I did not think about it, then I could pretend like nothing was wrong. But, as I am preparing for my trip to Chicago I find myself actually facing my disease for the first time in my life. CIDP is not only physically debilitating, but it also takes an emotional tool on those suffering.

Uncertainty. Loss. Worthlessness. These are some thoughts that I have felt.

Uncertainty about the future: Will I be able to play pass in the yard with my daughters? Will I get to teach my daughters how to drive? Will I dance at my daughter's wedding? 

I start feeling sorry for my about the things I am unable to do (Loss).  Then those feelings spill over to a sense of Worthlessness.

When I was younger, I never really felt any of those things. I remember feeling that God knew I was strong enough to handle this. I almost took it as a challenge between mind and body. However, as I got married, had two beautiful daughters, bought a house, those feelings began to surface more and more.

A little of a year ago I was truly at bottom. I had just resigned my football coaching position, and I was mad and sad all at the same time. I hated my CIDP. I felt like I had lost my purpose. For the first time in my life, I felt like God was giving me more than I could handle.

Then I hit a point where even I had enough of my self-pity. I took that anger and frustration and channeled it into a search for answers. I began scour the internet looking for the "cure for CIDP". As I searched web page after web page I began reading bits and pieces about a stem cell procedure being done at Northwestern Memorial Hospital in Chicago. The information I found gave me hope; and, hope can be powerful medicine.















Saturday, April 6, 2013

Confucious says...

Our greatest glory is not in never falling, but in rising every time we fall.

This is a quote I often refer to and I am sure that others who have CIDP can appreciate this statement.
 

Friday, April 5, 2013

Summary of The Clinical Trial at Northwestern

A summary of the clinical trial I am going through can be found by clicking on the following link http://clinicaltrials.gov/ct2/show/study/NCT00278629. This site will explain the purpose of this trial and the eligibility criteria.

Also, there is a lot of wonderful information and people on the CIDP and Stem Cell Transplant Facebook page.

Thursday, April 4, 2013

Stem Cell Transplant Schedule

I thought I would go ahead and post my transplant schedule so people could see what all test I will be going through. 

Also, I am willing to answer any questions that you may have; so please feel free to ask.


Monday, June 3rd, 2013
8:45 a.m.
Labs Drawn/Pick up order
Galter Pavilion
Northwestern Memorial Hospital
201 E. Huron-18th Floor
After you receive your order please proceed to the Diagnostic Testing Center located in the Arkes Family Pavilion (Corner Bakery Building) 676 N. Saint Clair-2nd Floor to have your labs drawn.

9:30 a.m.
Pulmonary Function Test
Galter Pavilion
Northwestern Memorial Hospital
201 E. Huron-8th Floor

10:45 a.m.
2D ECHO
Galter Pavilion
Northwestern Memorial Hospital
201 E. Huron-19th Floor

12:30 p.m.
MRI (Entire Spine)
Arkes Family Pavilion (Corner Bakery Building)
No9rthwestern Memorial Hospital
676 N. Saint Clair-3rd Floor
After your MRI has been completed, please stay to have your EKG (ATTACHED IS YOUR ORDER), no appointment is necessary.

After your EKG, please proceed to the 2nd floor in the Arkes Family Pavilion to have your chest x-ray, no appointment is necessary.

Wednesday, June 5th, 2013
9:00 a.m.
Dr. Kari Brodsky
Dental
Galter Pavilion
Northwestern Memorial Hospital
201 E. Huron-2nd Floor Suite 246
ATTACHED IS A FORM FOR YOU TO GIVE TO DR. BRODSKY

11:00 a.m.
Vein Check
The Blood Center
Galter Pavilion
Northwestern Memorial Hospital
201 E. Huron-11th Floor
12:30 p.m.
CT Chest (High Resolution)
Galter Pavilion
Northwestern Memorial Hospital
201 E. Huron- 4th Floor

2:00 p.m.
Dr. Richard Burt/Biopsy
Medical Specialties
Galter Pavilion
Northwestern Memorial Hospital
201 E. Huron-14th Floor

Thursday, June 13th, 2013
1:00 p.m.
EMG/NCV
Galter Pavilion
Northwestern Memorial Hospital
201 E. Huron-7th Floor
Instructions: Please do not use any lotions, creams, or oils on the body prior to the test.

Monday, June 17th, 2013
7:30 a.m.
Admit for Mobilization
Feinberg Pavilion
Northwestern Memorial Hospital
251 E. Huron- 2nd Floor Information Desk

Monday, June 24th, 2013
No appointment necessary
Labs Drawn/Pick up order
Galter Pavilion
Northwestern Memorial Hospital
201 E. Huron-18th Floor
After you receive your order please proceed to the Diagnostic Testing Center located in the Arkes Family Pavilion (Corner Bakery Building) 676 N. Saint Clair-2nd Floor to have your labs drawn.

Wednesday, June 26th, 2013
Nothing to eat or drink after midnight. If your doctor or nurse has medication(s) for you to take, please do so with sips of water.

Thursday, June 27th, 2013
6:30 a.m.
Temporary Catheter Placement
Interventional Radiology Department
Galter Pavilion
Northwestern Memorial Hospital
201 E Huron-4th Floor

After your line has been placed, please proceed directly to the Blood Center to have your labs drawn and begin stem cell harvesting.

ADDITIONAL DATE FOR STEM CELL HARVESTING: Friday, June 28th (if additional stem cells are needed).

Thursday, July 10th, 2013
1:30 p.m.
Triple Lumen PICC
Interventional Radiology Department
Galter Pavilion
Northwestern Memorial Hospital
201 E. Huron-4th Floor

Thursday, July 11th, 2013
7:30 a.m.
Admit for Stem Cell Transplantation
Feinberg Pavilion
Northwestern Memorial Hospital
251 E. Huron-2nd Floor Information Desk



No more IVIG

Bryan: Today was somewhat of a bittersweet day; it's my last doctor's appointment at OSU before I head to Chicago. However, on the bright side I am stopping the IVIG infusions.

I am a little nervous about stopping the IVIG because I have been taking it for nearly 10 years. It just seems like my body has become resistant to this treatment option and I am no longer getting any benefits from them. So please say an extra prayer that the bottom does not fall out from underneath me before June.

The neurologist also took this opportunity to council me on the risks of putting all my hope into the stem cell transplant being my miracle cure. As much as I want this stem cell procedure to be my saving grace I also understand that nothing is 100% guaranteed. None of the treatments I have tried in the past have had any guarantees and they all had far less hope for the future. My biggest fear is for my family and the people who have stood by me during my relapses. I do not want them to be devastated if this trip to Chicago does not provide the future they have envisioned.

So, please remember my family in your prayers because I know this past year has been extremely difficult for them.




My Story



 I have had CIDP for over 20 years and have been hospitalized more times than I can remember. Sharing my CIDP story is not something that comes easy for me. Explaining to people how you become so weak that your wife has to help you put your shoes on or how when you are laying in bed you feel like you are drowning because you are too weak to roll over are not the things that come easy for me to share. However, I feel the time has come for me to raise awareness for CIDP.

I was 12 years old when I noticed that I was becoming clumsy and also I was suffering from severe back pain. At my family doctor, my issues were dismissed as growing pains and a possible pulled back muscle. I was prescribe muscle relaxers and sent upon my way. As time past the muscle relaxers were doing nothing to stop the back pain. So back to the family doctor we went. At this visit it was decided that something out of the ordinary was going on and we were referred to an orthopedic specialist. The orthopedic specialist took one look at how I was walking and referred me to a local neurologist. 

At the neurologist, he had me lay on the table and close my eyes while he poked my legs with a pin; I felt nothing. I think my mom nearly fainted. I was immediately scheduled for an MRI to check for a tumor on my spine. The MRI revealed nothing. My local neurologist was wise enough to know that whatever I had going on was beyond his comfort level. At a loss, he referred me to neurology department The Ohio State University Medical Center (OSUMC). This is the place where we would find answers.

During our visit at OSUMC, I was put through a battery of tests. I do not remember all of the test, but the one I will never forget is the EMG(electomyography)/Nerve Conduction. This test is basically shock therapy. The doctor sends electrical current through legs and arms in order to see how responsive the nerves are. After all the tests were in I had a diagnosis and I was being admitted into the hospital to begin treatments.

Once admitted, I was started on IVIG. I do not remember how many days of IVIG I received, but I do know that I celebrated New Years Eve suffering from flu-like symptoms from the IVIG. I did not tolerate IVIG well, so I was started on 60 mg of prednisone daily. Prednisone worked well for me, but I could not reduce down below 10 mg without relapsing. However, I continued to take prednisone throughout most of my teen years until the side effects started. From the prolonged use of prednisone I developed osteoporosis. Over the past 20 years I have tried a variety of treatments. Beside the IVIG and prednisone, I have tried Imuran, CellCept, Cyclosporine, Solumedrol, Plasma Exchange and Dexamethosone. I have only received minimal success with each treatment.

After relapsing about 8 years ago, I decided to try IVIG again (once every 3 weeks). This time the IVIG seemed to be helping; and for the last 3 years I did not need to use a walker, or cane. For the most part I felt like I had my CIDP under control. Then about a year ago I felt a relapse coming back despite the fact I was now receiving IVIG weekly. 

Over this past year I have continued the IVIG and I have had 8 Plasma Exchanges; all with no lasting improvement. I have progressed from a cane to a walker to now a wheelchair. It was out of this frustration that I began searching for answers. During this search I kept finding information about stem cell transplants for patients with CIDP at Northwestern Hospital in Chicago. After reading through as much information I could find and speaking with my neurologist I called Northwestern for information. On February 19, 2013 I received a phone call from Northwestern saying I was accepted into the stem cell transplant study. 

Ann and I are writing this blog as a way to bring awareness to CIDP and stem cell treatment. I thank you in advance for taking this journey with us.


















Monday, April 1, 2013

What is CIDP?



 CIDP(Chronic Inflammatory Demyelinating Polyneuropathy) is a rare illness that causes gradual weakness in the legs and sometimes arms.  According to the GBS/CIDP Foundation International website, the occurrence of new cases of CIDP is estimated between 1.5 and 3.6 in a million people (http://www.gbs-cidp.org/home/cidp/cidp/). Left untreated it has been reported that 30% of patients will become wheelchair dependent (http://www.gbs-cidp.org/home/cidp/cidp/).

Our nerves are protected by a layer of insulation called myelin.  In patients with CIDP it is believed that the immune system perceives the myelin as a foreign body and begins attacking it. As the myelin sheath begins to be stripped away the nerve conduction begins to slow. This is what causes the weakness to occur. The real problem is the fact that it is unclear what actually causes the immune system to start these attacks.

Myelin and nerve structure