Stem Cell Saga Goes On

18 years ago

It's a serial story with twists and turns many may remember that EDD my partner has had 4 heart attacks and at least 11-13 angioplasties over the past 15 years and is still showing up for life every day. An experimental program was going to include him in their adult stem cell trials taking his own thigh muscle cells and growing them and injecting them. First time around "you need a pacemaker" he got a pacemaker and it became infected and almost killed him so he was out of that 1 next time around he was having neck surgery so he missed that 1 next time around he didn't qualify because the ejection fracttion which is what they had wanted all along was not right.....oopps a new doctor had put him on a new medication which is what affected it...but alas too late only 5 people chose in NY as well as 5 in several other cities around the world. This year they said they were finally expanding the trials to 100 people a pop but that it was now a double blind and that regardless of what was going on with him he was guaranteed a spot in the trial but may very well just receive a placebo.

(ah well life on lifes terms)only one thing holding it up they were approved for small trial but need new government approval for the expanded double blind. Keeping fingers crossed on this one! We thought he would miss this also because a routine out patient procedure coupled with the wrong antibiotics nearly did him in a week and a half ago sent him to the emergency room which wanted to give him the same antibiotic which was causing the trip to the emergency room (ain't we got fun)some benadryl and a couple of days of inconclusive tests and hes fit as a fiddle.

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Comments (13)

theroselvr
18 years ago
I have such high hopes for stem cell research. I don't want to go into gray areas but there are many ways to get stem cells and hope that one day, this will be the answer for a lot of people. I've read a few long articles on it, I think one was in Time magazine, it was 4 or 5 pages.

My dad was scheduled to get some right before he died, unfortunately, the cancer got worst and he did not qualify, so I know how disappointing it is.

Do you know what the study is called?

I'll cross my fingers & toes for you guys. Maybe this is the one he'll get? If not, maybe the next year will be the best out of all of them and he'll benefit from waiting. It's hard entering a study like this where you don't know what you are getting. I'd imagine he couldn't do other studies after? How would they work it with him qualifying if he does not get the stem cells?
jim_east_coast_zn7
18 years ago
Joe,
Was thinking about you and your partner the other day and wondering how things were going with the stem cell research. I had sent you the original info on the article I had read several years ago. Sorry to hear of the ups and downs he has encountered. Fortunately, he seems to bounce back each time; hopefully, he can get into a study soon. I am sure there will be more studies in the future and not fewer but on the other hand, the way this country is spiraling downward, one wonders.
Wishing you both the best,
Jim
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zeffyrose
18 years ago
Joe-----You and Edd sure have had your share !!!---I do hope things take a turn for the better.

I have read good things about Adult Stem Cell----I understand it has been very good in many cases.

Good Luck to you and Edd.

Florence
rose_nutty
18 years ago
You guys have been through about the same amount of stuff that we have. Seems like one darned thing after another! My hubby just hates the "one size fits all" medicine that they seem to be practicing these days. His last stay in the hospital a month ago turned into a nightmare that will be causing him to switch cardiologists from the group he has been with for 30 years. As my sister likes to say about my hubby "he's either the most unlucky guy in the world because all this offbeat stuff keeps happening, or the luckiest person I know because it hasn't killed him yet". I think the same can be said of Edd.
youngquinn_gw
18 years ago
Gee Joe its hard to take when you have to tell the Doctors what they are doing wrong (with the antibiotics!!)
I hope the Gov approval turns up and hope even more that he doesnt get the placebo !

cheers and good luck to you and Edd
carla17
18 years ago
I'm glad you updated us. I was thinking about Edd the other day. Good luck Edd.

Carla
kathwhit
18 years ago
Joe, I am glad you updated us on Edd. I was hoping that no news was good news. One thing I have found out is to never leave a loved one in the hospital alone. Too many mistakes can be made. I hope Edd makes it into the study and that it proves to be helpful.
Sincerely
Kathy
User
Original Author
18 years ago
I was taking a training class during all of this for some new things on my job and broke out in itching 3 of the people I work with thought it was somthing I at 2 people I work most closely with asked "whats going on with EDD" I left the class went to the hospital only 5 blocks away and asked was it vancomycin and the nurse went into fits of laughter..."he said you would know wow thats amazing" yeah they just gave him benadryl and want to give him a mixture of vancomycin and benadryl later...I asked if the doctor was around "are you armed" she asked "no but there are plenty of things lying around that I can use on the clown"!
when it comes down to it everyone gets somthing and we are both quite happy to be here. So many of our friends had their lives snuffed out early from drugs, alcohol, AIDS or war!
cupshaped_roses
18 years ago
Dear Joe. I am sorry to hear that your partner has so serious health problems and struggle so much with medications and getting into treatment programs that seems promising. He is lucky to have you by his side, to defend him against doctors who many times make poor decisions. I wish you and Edd well. You will be in my prayers.

Niels
moodyblue
18 years ago
Joe, I wish you both all the very best. I am sorry that poor Edd has had to endure all these health problems and has had bad luck with not being able to participate in the studies to date. I wish him all the best that he gets to be in the new trials and that some good news will become of it.
Take good care
Pauline - Vancouver Island
ronda_in_carolina
18 years ago
Poor Edd. Hang in there Joe...you are surely his guardian when he is in the tangle of healthcare.

Ronda
harryshoe zone6 eastern Pennsylvania
18 years ago
Joe,
Edd sounds like a real trooper. One medical procedure or emergency after another is a tough way to live your life. I doesn't sound like a picnic for you either. All you can do is live one day at a time. And hope.

Best,
Harry
anntn6b
18 years ago
Sympathetic itching...if I read that right?
So very glad you have each other and the sharp minds to deal with all of this.
Ann