Mr Darsel Tebo

[teboseahawkone]

Hello all I found this site and have read many of the personal experiences. I'd like to share mine. I'm a 57 year old dad X5 granddad X6 great grand X1. I suffer with COPD classified as severe. Diagnosed three years ago. Misdiagnosed for up to three years prior to that. As trips to the E. R. were thought to be heart problems. Due to the chest discomfort.
My last exasperation was April 2 2013. That got me 10 days in the hospital. After which I decided I'd get in better shape or die trying. My civilian Pulmonologist never suggested exercise. As a matter of fact pretty much discouraged it. Started going to the V.A. Sept of 13. They had a bit of a different opinion on the exercise. I left the hospital it April weighing 152# now I tip the scales at 184#. I stand 5'10" don't know what that puts my BMI at. I feel a lot better though.
I'm on Oxygen at 2LPM. Though I run it at 1 1/2LPM when I'm at rest. My exercise routine is three 25-35 min. Mix of 100 pace jogs ,walk and leg lifts front ,side ,back and heel toe stands 5 days a week. Isometrics for chest and back everyday. Dumbbell curls 9 sets 15 reps three times a week for arms.
Now for the reason I'm here. I'm looking for stem cell treatment. Lung transplant doesn't look like a good long term solution. So any suggestions would be helpful. Thanks to those that take the time to read this.

 

[barbara]

Hi Darsel - Glad you found us. You are one exercising machine! I would suggest you look through the Ask the Doctor section to read about various doctors/stem cell clinics. Also, this month's Ask the Doctor is in the Spotlight section. We always have the current Ask the Doctor there and then archive it into the Ask the Doctor section at the end of the following month. There have been many questions asked of the hosts about COPD as many of the members here suffer from it.

A good rule of thumb when researching (we don't endorse any particular doctor or clinic) is to be consistent. Ask the same questions of all those you contact. If someone claims they are actually curing patients, or most of the patients are no longer needing supplemental oxygen, I would cross them off the list. Stem cell therapy can and does improve the quality of life for many. It can stop the progression of the disease. Some patients can actually get off supplemental oxygen, but cure - no, a high percentage of patients no longer needing O2? - no.

There are several doctors doing studies under IRBS. What this means is that they have a protocol that has been approved by an Investigational Review Board and they have agreed to follow that protocol for all patients in the study. Patients who agree to be in a study like this are asked to commit to follow up (usually a visit where your lung function is retested, 6 minute walk, O2 saturation, blood work - nothing horrendous). The goal is to publish the results when the study has enrolled enough patients over a certain period of time. Clinics offering treatment outside an IRB do not require any post treatment cooperation from patients. You can go in, get treated, and that's it. You may or may not be asked how you are faring after you leave the clinic. That doesn't mean the treatment is unsafe or that no one will care what happens to you after you've paid and gone home, but it can happen so do your research wisely especially if you are finding it hard to get your questions answered pre-treatment. Most reputable clinics do not curtail access to a consultation with someone at the clinic who is knowledgeable about the procedure - be it the doctor or someone very familiar with the treatment protocol. If all you are offered is a sales pitch, then that's not a good sign.

Please feel free to ask any questions you might have. Cost is not an indicator of quality either. A simple (cells are not more than minimally manipulated) autologous (your own stem cells) treatment should not equal the cost of a Ferrari or even a new Jeep for that matter.

 

[teboseahawkone]

Thanks Barbara! I have contacted Dr. Terry Grossman. Who I located on this site. Still looking for others. I'm lucky in that I'm scheduled to do a lung function test tomorrow at the V.A. I have access to my full med records. So I'm hoping to save on the travel and do phone consultations to start.
As far as the exercise goes. I'm just following their recommendations. Which we will be discussing tomorrow. I've gained muscle mass that has increased my need for O2. Or so I think. I guess it could be the progression of the disease.