Six Years Later...

It's been six years since my initial stem cell treatment, and two and a-half years since my last post on the subject, but folks keep asking for updates, so here I am. 

Here is a summary of everything: I spent five weeks in a Chinese hospital in 2009 for stem cell treatment using umbilical cord stem cells. Before treatment I could exercise 20 minutes a day maybe three times a week. After treatment I could exercise two hours a day, six days a week. However, after eight months my strength and stamina began to drain away and by early 2010, I knew it was gone completely because I was back to 20 minutes, three times a week.

In late-2011, I began using a power wheelchair for mobility. In 2013, after nearly 25 years, I retired from my paralegal career because my hands had become too weak to use all day. Now I am able to walk, but not far; I can stand, but only with the help of my lifting wheelchair; and my balance is a truly scary thing. But I get to sleep in, do projects I choose and spend lots of time with my awesomely wonderful girlfriend, so it's all good!

I hope you find your own happiness, too!

Russ ~

New Post - 2 Years Post-Treatment

I've had several people email me lately asking how I'm doing now that 2 years have passed since my treatment. The positive results I initially received only lasted about 8 months after I returned from China then they simply disappeared. For the past year or so I have felt a decline in health and ability. I now use a scooter for walks longer than a block or so, and recently bought a conversion van to get around. Standing from a chair is getting very difficult. I had to stop PT given my lousy insurance and the cost. Exercise is now difficult but I do what I can.

Would I go again? No. It seems to me that the technology for stem cell treatment in FSHD is just not there yet. Maybe it will be in my lifetime, but not yet.

Signing Off

Well, I guess its time to say goodbye and wrap up this little blog. It has been 14 months since I returned from China from umbilical cord stem cell treatment. As I mentioned before, my results at first were significant but seem to have leveled off within six or eight months of my return.

Everyone will experience their own results from stem cell treatment. I hope yours is awesome - I guarantee it will be life-changing.

I want to thank all 2,456 of you that have continued to read my blog, followed up with questions and traveled with me on this journey. Your support has been invaluable.

Russ Kleve

May 3, 2010

Energy seems low these days. I continue to exercise, but it's dropped a bit. I'm only working out 3-4 days a week for 30-45 minutes, mostly working on legs and stretching. I still go to PT every other week for an hour, and he continues to test and measure me. No changes in those areas. The strength and mass I gained 4-5 months ago remains, but I am not improving beyond that. Obviously, part of the reason is low energy, so I'm re-starting CoQ10 (200 mg/day)in hopes that will improve things. I've also had some stomach acid issues for the past two months which I'm sure contributed to the issue, but that's cleared up now so I expect to make some progress in the next 30 days.

The Readers Are Restless

Since I am getting more and more emails, I guess its time to post an update. I'm re-using the response I sent last night to an inquiry:

Hello, K*****

I went through Beike's program between March and April, 2009. I enjoyed my experience, and found them to be very involved in my care and well being. I even came to know many staff members on a personal level and was invited to a wedding! Nearly everyone spoke some kind of English.
You are assigned a team of doctors and staffers with a primary. The team includes physical therapy and occupational therapy, nurses, interns and assistants whose only job is to translate in perfect English for you to better understand what they are doing to you. You are first assessed for PT, then a specific plan that fits your abilities is developed and maintained 5 days a week.

Follow up is crucial for them, so if you go they will want to keep in touch. Just very polite, professional, pleasant, friendly people - once you get over the culture shock of seeing so many people!

Before China I could not exercise more than about 20 minutes before becoming totally exhausted. When I returned from China, I was able to exercise 1-2 hours, 5 days a week. I began seeing a PT locally who is helping me to workout safely. I'm doing stretching and arm exercises, stationary bike riding, situps and tons of glutes work to strengthen my "core" so I can stand better. I gained 3 inches of mass in my thighs, which my PT has documented.

Today, however, the results I've gained seem to have leveled off, and I have not gained - or lost - anything in the past three months. I continue to see my PT and exercise, but must admit it seems a little more difficult to maintain the 5 day weeks with it.

Please understand stem cell treatment is not a cure; only a treatment. I knew this going into it, and Beike was pretty clear in its literature about no guarantees. But I could not find another English speaking person with FSH muscular dystrophy who had done the treatment, so I decided to investigate the best I could and be the test-subject!

Was it worth it? Probably not completely, but I had the means so I went for it. Besides, I would never really know if it worked unless I tried it for myself. Its really harmless - no spinal injections, just a lot of site injections directly into the muscle groups. For me, there were 160 injections. I was asleep the entire time, and only slightly felt the injections when I awoke. I also received the stem cells through an IV in my hand.

Everybody will have a different result to the treatment, so please don't base your daughter's future on my results. The younger you are the better the results, I've read. It also depends on what type of MD she has, how early was the onset, the level of the severity, race, etc. These are questions for Beike. If she can walk at all and exercise, she might do okay. The issue might be keeping her exercising.

Anyway, I hope this helps.

Russ

Some Answers

To answer some questions from my last post, yes, I would return to China for more treatment if I could afford it. However, I spent about $50,000 - when all was said and done - for my treatment, and will not be in a position to do that again for a number of years unless I try fundraising.

For more information about the stem cell treatment I had through Bieke Biotech, check out their site at: http://www.beikebiotech.com/

12 January, 2010

It has been just over 8 months since I returned from Hangzhou, China. I have been exercising 1-2 hours per day, five days/week since then. While my initial results were great, it seems they have leveled off and I am now losing ground. I am falling more frequently, and getting out of a chair, which was always difficult, seems to have become even more difficult. It appears my treatment only went so far for so long.

I will continue to exercise because it helps me to feel like I am doing something to deal with my muscular dystrophy. And I will continue to post here for the next 3-6 months, just in case there are changes to report.

Meanwhile, I remain supportive of stem cell treatment generally, and Beike Biotech, the company I went through for the treatment, specifically. Perhaps some day new techniques will be found to make this treatment work better for MD patients.

Thank you all for your support and kind words.