May 2013 2 Year Update

All continues to go very well with my recovery...no limitations to my day-to-day activities and I continue my active lifestyle. My recent two-year follow-up last week showed stability/improvement in all areas. Lung diffusing capacity continues to hover at 93% (66% pre-transplant) and skin continues improvement. I hope this site has been helpful...feel free to contact me at at hawaiisclerodermanetwork@gmail.com if you have any further questions.

July 2012 Update

Aloha everyone! My stem cell transplant recovery continues to go very well. Thanks to the grace of God scleroderma no longer gets in the way of my day-to-day life. I continue my full time military career and live a healthy life. My annual follow-up in March showed continued improvement in all areas. However, the most noticeable improvement was in my lung diffusing capacity which increased from 66% pre-transplant to 93% one year later. If you're battling scleroderma, I hope this blog has been helpful in answering some of your questions about the stem cell transplant process. I won't be posting regularly unless I experience a decline in my health status. However, don't hesitate to contact me at hawaiisclerodermanetwork@gmail.com if you have any further questions.

Merry Christmas and Happy New Year

Merry Christmas Everyone!

I'm enjoying this Christmas with my two beautiful daughters, extended hawaiian family and my beloved wife, Wendy. Wendy was born on Christmas, so we also get to celebrate her 40th birthday today in beautiful Hawaii. It's hard to believe that just a year ago I completed my pre-stem cell transplant testing and was informed that I was approved for the stem cell procedure that gave me my life back in less than 1 year.

Well my first marathon is in the books. After five months of rigorous training, I completed the 39th Honolulu Marathon on December 11th with a time of 4:19:36. I placed 2428 out of 19,078 runners and the pain only lasted a couple days afterwards. It was a great personal experience that I know I'm truly blessed to complete after all I've been through this year. My training buddies and I also used the event as a fundraising opportunity and we were able to raise just over $1000 for the Scleroderma Foundation.

I continue to see improvement in my overall health and contribute that to the stem cell transplant along with diet, exercise and plenty of rest. My annual follow-up appointment at Northwestern is in March and I will be sure to keep you all posted on my results.

If you're battling scleroderma, I hope this blog has been helpful in answering some of your questions about the process. Remember, there is hope out there, so keep fighting and pressing your medical team for answers to your questions.

As always, feel free to contact me at hawaiisclerodermanetwork@gmail.com if you have any further questions.

Happy Halloween

Aloha Everyone!

It has been an exciting several weeks as I continue to notice steady improvement in overall lung function and energy levels. My training for the Honolulu Marathon on December 11th is in full swing now with an average of 20-40 miles logged each week. My last pre-marathon readiness series race was an 18.6 mile run on 23 Oct and I completed the race in 3:04:29.5 with a 9:54 mile pace. I've never been a long distance runner in the past, but I suddenly feel the urge to go the distance since my lungs feel so good. Prior to my stem cell transplant the farthest I had ever ran was 12 miles and that was approximately 14 years ago.

I'm running the Honolulu Marathon in December with a few close friends and we decided to use the event to raise money for scleroderma. Our fundraising website is located in the blog links on this page. My training buddies and I would REALLY appreciate you considering a donation and helping spread the word about our scleroderma fundraising efforts to others.

The Scleroderma Foundation published an article on my scleroderma story last month in their magazine, "The Voice." It provides an accurate overview of my scleroderma journey and I provided a link to the online article under the blog links on this page.

Well it's time to take the kids trick or treating. If you're battling scleroderma there is hope. Feel free to contact me at hawaiisclerodermanetwork@gmail.com if you have any further questions that can't be answered by this blog.

Six Month Update

It has been a very busy several weeks since my last update. My recovery continues to go well and I was happy to receive a great progress report during my six month follow-up in Chicago. My lungs feel great and I've been able to continue to increase my exercise capacity gradually. I'm still training for the Honolulu marathon in December and run approximately 20-25 miles per week with several races scheduled prior to the marathon to assist with conditioning. I've never run a marathon before, so this is a brand new experience for me. I completed the first pre-marathon race (15K) on 21 August in 1:28:15.5 with a pace of 9:28 per mile. I missed the 20K race on 2 Sep due to my vacation on the mainland, but was able to fit in a 24K run to stay on track. My next race is a 25K on 2 October.

While in Chicago for my six month follow-up, my doctor ordered a Pulmonary Function Test (PFT), echocardiogram, CT scan and multiple lab tests.

All tests indicated my Scleroderma had not progressed any further when compared to tests conducted prior to my transplant. Additionally, my PFT scores show a significant improvement in lung function. The technician who conducted the test said she never saw such significant improvements so quickly after transplant. Here are my numbers before and after transplant (same PFT reference for both tests):

Forced Vital Capacity (FVC) - 80% before and 87% after
Total Lung Capacity (TLC) - 87% before and 94% after
Carbon Monoxide Diffusing Capacity (DLCO) - 66% before and 83% after

My current meds include an antiviral called acyclovir, which I'll continue to take for six more months. I'm also on Naturethroid to address my under active thyroid. My transplant team no longer requires monthly lab tests. I'm scheduled to return to Chicago in February 2012 for my next follow-up appointment.

I'll continue with monthly updates or sooner if significant changes occur.

Four Month Update

All continues to go well with my recovery and I haven't experienced any major setbacks.  I did catch a cold after my fun filled fourth of July weekend, but my immune system seemed to deal with it just fine.

I'm no longer on any antibiotics or anti-fungal medicine.  Current meds include an antiviral called acyclovir and synthroid to address my under active thyroid.  My labs are now monitored monthly.

I attended the annual National Scleroderma foundation on 8-10 July in San Francisco and it was a great event.  I was able to share my story with patients as a speaker on one of the panels and learned a tremendous amount from doctors and other patients.  I was truly impressed and inspired by the patients I met at the conference - they were amazing people!

I was able to fit in some good site seeing while in San Francisco to include Alcatraz, a city bus tour, a stroll along Fisherman's wharf and a sunset cruise in the bay.  I also proposed to my girlfriend, Wendy, who has provided me with unconditional love and tremendous support prior to, and after my Scleroderma diagnosis.  I decided to propose at sea while sailing under the Golden Gate Bridge during sunset.  It was a perfect setting and I definitely caught her by surprise.

I'm scheduled to return to Chicago for my follow-up appointment on 24 August and will provide an update with the results.

Three Month Update

I've continued to steadily improve over the past month.  I'm back at work full time and I've resumed all of my normal activities (golf, hiking, running, scuba diving, etc.)

My subjective assessment is that my lung function continues to improve based on my performance during exercise.  I'm running 4 miles at a 35 minute pace and usually average 2-3 runs per week.  The shortness of breath upon exertion caused by inflammation in my lungs seems to be reduced significantly.  I'm scheduled to return to Chicago the last week of August for my six month follow-up appointment.  During my follow-up appointment I will complete a pulmonary function test and a high resolution CT scan of the chest.  It will be very interesting to see how these compare to the tests prior to my transplant. 

I'm also working with naturopathic doctors in addition to my conventional doctors.  While my MDs have been great addressing my symptoms, they aren't trained to holistically treat a patient or address the underlying physiological imbalances that lead to disease.  Thomas Edison is famous for saying" The doctor of the future will give no medicine, but will interest his patients in the care of the human frame, in diet and the cause and prevention of disease."  A true whole body approach is key to staying healthy, and especially important when dealing with highly complex autoimmune conditions. 

I am really looking forward to spending time in San Francisco in three weeks for the annual Scleroderma Foundation conference.  It will no doubt be another great event and an opportunity to learn from so many others.