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mikiao
08-30-2010, 01:32 PM
I have only just joined this wonderful forum site and for the last 3 days have been doing a lot of reading! My name is Michael, am 70, and have severe emphysema
with a fev 1 of 25 %. I was diagnosed about 10 years ago , smoking was the cause. I have been living in Brazil for 51 years now and have been in the cattle business all
my life. At present I am in contact with Mr. Walter Trotter who is collecting some health information from me to book me for a stem cell transplant in the Argentine with
Dr. Fernandez Vina either in October or November . I have chosen the Argentine as it?s only a 2 hour flight from S?o Paulo and am impressed with all Dr Vina has done.
It?s quite expensive however I believe we can get two bone marrow I.V for the price of one. Actually I?m not quite sure about this as I have not asked Mr Trotter yet.
Anyway I?m very new to all this and would of course be delighted to receive advice etc from the more experienced members
May I say again how wonderful it has been finding this forum,

barbara
08-30-2010, 02:56 PM
Thank you very much for your supportive comments and welcome to the forum. I believe you have made a good choice based on location. About 50% of Dr. Fernandez' patients seem to get good results. Mr. Trotter and the doctor are probably going to be more enthusiastic than that, but that's about what it is.

Dr. Fernandez is very experienced and is a good doctor. You will have a bit of a ride to his clinic from Buenos Aires, but from all reports, you will be taken good care of.

The marrow extraction is nothing to worry about, nor the infusion of the stem cells back into your body. The best advice I can give as a veteran is to make sure you are as fit as you can be prior to treatment and take the time to fully rest and recuperate (even if you feel like you can run a marathon) after the treatment. Some people do crazy things and wear themselves down. This uses up those valuable stem cells which need to be working on cutting inflammation and restoring lung tissue and blood vessels.

You will undoubtedly need two treatments even if the first treatment seems to help you. A second treatment can do no harm and if he is selling them as some kind of two for one package, by all means, plan on having the second one.

You also should monitor yourself before you go and after treatment. If you have an oximeter take your oxygen saturation readings daily at the same time. This is helpful in determining if you really made any progress medically. I keep a daily diary of how I feel each day and do my readings first thing in the morning.

I would also suggest modifying your diet to make sure you eat foods that don't fuel inflammation which is really at the heart of this disease. More fruits and veggies (probably hard to tell you that if you are a cattleman), but that's what's needed. Less sugar and heavy starches as well.

If you worked around grains and hay or straw, you may be surprised to know that they could also have contributed to your condition. Smoking is not the only culprit with emphysema. Try to avoid environmental "dusts" like the ones I just mentioned.

One last thing is to decide what you hope to get out of the treatment. Give yourself reasonable expectations. If your disease has been progressing, this will probably put a stop to that or drastically slow the process. Will it do more for you? There are no guarantees, that's for sure. Many people, including a man named Nassin, who to me is the Godfather of stem cell pioneers and a member of this forum, have had good treatments with Dr. Fernandez. His FEV1 was a lot less than yours and he was older than you when he got his first treatment in 2006. He is still active and going strong today. Others have had the same treatment and did not achieve the same results but did stop or slow the progression of their disease. Unfortunately, stem cell therapy is in its infancy and there simply is not one method of treatment that seems to be the magic bullet for treating COPD.

I hope others will chime in with anything else they think will be helpful advice for you. Please keep us updated as to your plans.

mikiao
08-31-2010, 02:40 PM
Many thanks Barbara for all your advice as also for what to expect with regards to results from a stem cell transplant. I was pleased to see that you
think 50% of patients can get a good result. As my pulmonary local Doctor said ,50 % against 0% is like winning on the lottery!! Actually they say
I have a 65% chance to get better! Anyway I certainly think it?s worth a try. I am now in the process of sending information such as spirometry tests etc
to Mr Trotter and if I pass the tests hope to reserve a date to go to the Argentine in October or November. The language barrier will not be a problem.
May I thank you again for explaining to such detail your experience and shall keep you informed of my whereabouts!!

jgp
09-01-2010, 10:11 AM
mikiao; may the lord be with you, and keep barbara and us posted please. asking her is like asking a stem cell dr. she knows.

barbara
09-01-2010, 10:35 AM
Absolutely not. I never give medical advice. The practice of medicine is between a patient and a doctor, not the FDA or a moderator of a forum for sure.

The 50% figure I quote is from talking to patients and also from a VERY knowledgeable source. The results are not necessarily lung rejuvenation, but patients report they are no longer needing supplemental oxygen or need it much less than before, they may have less shortness of breath, etc. Dr. Fernandez is a cardiac specialist and many COPD patients may have cardiac issues they aren't even aware of. Initially, he was treating heart patients when he noticed how much better their lung function got after treatment. That's when he decided to treat emphysema patients and he got some good results that allowed patients to live a more normal life. Why it doesn't have the same effect on everyone is hopefully something he is studying. It is very important for doctors to document and follow patients both pre and post therapy. Otherwise, they are just treating in the dark.

jgp
09-01-2010, 01:42 PM
barb ; as usual i stuck foot in mouth, i don't know a lot about this. i want stem cell therapy before i get too bad. but i'm a kind of like poor, i feel i'll only get one shot at this and $25 or $30 grand is like more than i made working. do you think the odds will get better than 50%? again i'm sorry i said the wrong thing.

barbara
09-01-2010, 01:53 PM
jgp - Don't worry about it. I just don't want anyone thinking we are offering medical advice because we are not. You would be surprised who reads this forum looking for tidbits like that. Unbelievable, but true. They would love to silence us.

Yes, I think the odds will improve, but it is going to take doctors that want to do studies and clinicals to make this happen. Otherwise, if there is nothing to base the outcomes on, how can any type of consistent conclusion be made? It's kind of hit and miss for most right now. Many in the industry do not have the time, money or inclination to want to do such a thing. They are busy treating patients and making a good income for the most part. The incentives just aren't there for them. That's why patients need to ask if any studies are being conducted or if the company uses the ICMS patient registry at least. I know it's hard to understand why these things are important, but that is how future treatments can be improved upon and it also gives credibility that can be used against the naysayers out there.

mikiao
10-29-2010, 12:12 PM
I finally went to the Argentine for my stem cell transplant with Dr. Roberto Vina which was done on the 20th of October. In the end we (my son and I) decided to go by car as
by plane I had to go through all the oxygen procedure and face being taken everywhere in a wheelchair in these huge airports. The car journey took two and a half
days as it was 2.000 klms. The drive was great going through wonderful agricultural land in Brazil and also Argentine. San Nicolas is a small town with a population of
about 100.000. On the 19th they called the hotel asking for me to go to the clinic for some tests at 3.00pm The tests were a blood test and an eletrocardiogram etc.
I spent the night at the clinic which is huge by the way, looks more like a hospital, and the next day they came for me!! It was about 8am. A Dr. Saslavsky operated
while Dr Vina assisted everything. He told me that they extracted 400mls from my hip. After that I was left for about an hour and a half before having the cells trans-
planted. Soon after the extraction my blood pressure fell from 12-8 to 8-6 which put me into an 30 minute doze. I was then taken back to my room at about 4pm and
received a visit from Dr Vina asking me to spend the night at the clinic. The next day I returned to the Hotel, had lunch with my son and then we decided to get on that
road again. Once home my ankles have swollen and I have been feeling worse. I have read that this happens sometimes. Dr Vina?s technique is very simple, no
growth factors etc, and he also does not recomend any suplements etc. All he asks for is to send him my spirometry tests etc every 3 months. He is not against
suplements however does not subscribe them.

Michael
_____________________
Had Autologous treatment 10-20-10

barbara
10-29-2010, 02:27 PM
Thanks for the story of your trip and treatment. You probably feel worse right now because you haven't given yourself any rest. I hope you will take it easy now that you are home. Riding in the car like that can give you edema and so can the treatment. If you go again, please stay a couple of days afterward to rest up a bit. Keep those feet elevated and please get to feeling better,

Everett
11-14-2010, 09:21 PM
I don't know how I missed your postings.I am some six years your senior and also have severe copd. I was in touch with Dr. V but opted to go to Florida to Dr. F there in Sarasota. My treatment took place in August and it seems to be working. I was tested fev-1 last week and I have improved by 1% which is a reversal from 29. I was a smoker for may many years and attribute my copd to that mainly but I too spent a lot of time in the cattle pens breathing the dust working calves and also spraying the cattle breathing the mist and getting soaked with the spray for flies,etc. That along with farming didn't help any. Fortunately I went on to become a dentist but you never get cattle out of your blood or farming either so I spend as much time as I can at the ranch. I have learned one thing since having my treatment. Do not push yourself working and rest when you get a little tired. I wear a mask when out when I think of it I am going back to Florida for a second treatment next weekend and as Barbara suggested don't set your expectations too high. I spent most of last week depressed becouse I thought that I had improved more than I have. Now I know better what she meant and wont make that mistake again. She has had many treatments of various sorts and is an authority in my books tho she will deny it probably.
I hope that you continue to improve. I would love to see your country (ranch). I know that it has to be beautiful. Take good care and God blessings on you and yours.
Everett Byrom

mikiao
11-15-2010, 08:43 AM
I am happy to see that you have reversed your fevI after your first treatment. To me that sounds great. I?m sure that
by having your second treatment you will start getting in shape for working your cattle again!! I have not felt any
benefits yet from my treatment which was 25 days ago though Dr Vina says results should start after the second month. I still manage to go to the ranch and drive around by truck and my 2 sons do the hard work!! Over here we breed
our cattle on grass and only finish fattening the steers over
the last 3 months in the pens. I breed pure bred Nelore cattle, which are similar to your Brahmas and also Bradfords.
Brazil is very hot and the Nelore cattle are resistant to our ticks.Wishing you plenty of success for your second treatment in November and as Barbara says "take it easy!!"
God bless, Michael

Connie
11-15-2010, 01:28 PM
I am so encouraged by your 1% improvement. Staying the same and not dropping is huge to me. When I get a 1% improvement (and I am going to some day) I'll be doing the happy dance !!! Also the fact that you feel better and can do more is a BIG DEAL! As important as those #'s are to the doctors and researchers who cares what the #'s are if you are able to do more and have a better quality of life. That's what it's all about. Well actually the hokey pokey is what it is all about :D... but .....I'm just sayin'