Stem cell search

[John Henry]

Hi, I'm John,
I have severe COPD, and as a final resort am considering Stem Cell.

I was first diagnosed in 1985. Was transported to St. Vincents Hosp. in NYC, in respiratory distress and spent 14 days on a vent. That convinced me into giving up smoking. While in my final days there I had a spontaneous pneumothorax, they patched that up and I went home. I had an additional one while driving home from Atlantic City in 1987.. That one cost me 10 days at the Jersey shore, ( Toms River Hosp. ) not exactly the shore.

In 1993 I went to Pennsylvania for a transplant evaluation and was excepted. After returning to NY I had a friend at Columbia Presbyterian Medical Center, who suggested that I go and get listed there as well as PA. After seeing Dr. Carlton and being accepted, he suggested seeing a Doctor, a pulmonary surgeon at the Hospital. I did, and after a short evaluation in late 1994, I underwent a ( LVR ) Lung Volume Reduction where he removed the upper lobe of my right lung. It was very successful getting me back about 40% of my breathing capacity. He anticipated that I would make it until 2000. Well that came and went with not much of a decrease in my breathing.

In early 2009, I started to notice a significant decrease. In early April of this year I was transported, in respiratory failure to PRM here in Naples.The Doctors there did wonders... I spent a total of seven days in the hospital, four in ICU on a vent. During that four day period things were not looking good at all. Out of the clear blue my numbers went up, just short of pulling the plug mind you. I arrived home the Saturday before Easter. Of course all of my family came down from NY at the onset. When I arrived at my residence, I was not in good shape at all because atrophy had sent in. I had to learn how to use my hands and legs all over again. I'm very thankful that my daughter stayed on five weeks to nurse me back to health. My significant other, who found me in failure, had to return to work.... I had a nurse, physical therapist, occupational therapist and a home aid who provided great care. Within three weeks I was up around and driving. In the early stages of recovery I didn't have much hope. The two therapists along with my daughter were a god send. I had been on 0/2 at night prior to this incident. In the beginning I was using it 24/7... I have been able to ween myself of the daytime 0/2 unless I really get s/o/b.

I have looked into some of the programs that are in progress. I am not a candidate for the studies here in the U.S. due to the fact that I had prior surgery ( LVR ).... what a shame, but that's the way it is. I have looked the grim reaper in the eye on a few occasions, but I'm not ready to give just yet. My only hope now is Stem Cell, other than a transplant, which at the age of 69 is out of the question.. If someone could provide some avenues I would be very greatful. I called Dr. Grekos office today, but the $64,500.00 is a tad out of my reach. Are there other options??, any information you can provide will be greatly appreciated...

Thanks, JH

 

[barbara]

I will send you a list of resources. You have quite a story to tell. I am glad to have you join us. The price tag is too high for many with Dr. Grekos unfortunately, but there are other doctors out there treating with some success. Every day I hear of new methods, new cells being tried. We are all Pioneers right now and cannot expect any more. Stem cell therapy does not help everyone, but at this point, it is a lot better than staring at the wrong side of the grass as member Tom says.

Please do me a favor and join www.safestemcells.org When you go to the site, you will see how to join. There is also a link to the FDA. Please send them your comments urging them to legalize stem cell therapy in the U.S. and not regulate our own stem cells as drugs. Please have your great daughter and any one else you know join as well. We must get our member numbers way up there to be successful. You should not have to leave the U.S. to have treatment. As I say everyday, this is criminal in my mind what the government is doing to the millions of people in this country who are terminally and chronically ill. WE MUST FIGHT THIS.

 

[John Henry]

Barbara, thank you for the information and prompt reply. I have done as suggested and joined that group, making my feelings known. I think I would be rather hesitant to travel to Mexico at this time, with what all is going on with this flu thing. Are there some recent Stem recipients in this group who would be willing to share the experience, be it pro or con?

 

[barbara]

Hi John - Not all the companies are in Mexico that I sent you. I don't believe that the swine flu is something confined to Mexico's border towns. I believe it is relatively safe to travel just across the border if needed. My biggest fear is catching something on an airplane which I have had happen to me many times in the past. The recirculating air is only as good as the health of the people on board with you. Some swear by using the product Airborne, but I swear by car bourne any more. I drive everywhere as I no longer want to risk flying. You might consider having treatment from Drs. Feinerman or Steenblock if you wish to stay in the U.S., but remember these treatments are limited because of the FDA. I do think they have some value however, but you may not get the same results that you could get by going outside the U.S. Each person is different and there simply are no guarantees.

If you feel you can fly, then explore the other possibilities I gave you. Start with writing up some good questions and then contact the clinics and ask for a consultation. Ask them all the same questions so you can compare apples to apples. The resources I provided for you are for clinics where members have had treatment. Our criteria for being on the resource list is that we do not receive major complaints about the clinic or the doctors, that they respond to us on behalf of patients if needed as well as giving good before and after service to patients and that they have some successes. We also like them to be available for the forum to answer questions if needed and be very concerned about patient safety first and foremost. We really do not endorse any clinics or doctors, but we are quick to point out those that don't make the grade for our resource list.