stem cell transplants

[Everett]

I am replying to an inquiry from Nancy Appleton.
Nancy, you asked if I would give you some information on what is involved.
I went to Sarasota Florida and was treated by Dr. F. In my case they drew seven vials of blood from which they collected the stem cells. The next day they transfused the stem cells back to me in an I V. They also gave me another substance I V that day. The next day they treated me again with another substance. Then I met with Dr. F. again and discussed what I could hopefully expect from the treatment. He gave me some medicines that he wanted me on and a prescription for some Glutathione and another med. He also wanted me to come back in three or four months for a follow up treatment. The first treatment was on August 19-21. As it turned out, he is enthusiastic that I am improving and wanted me back in October but there was no way that I could get another trip in. We have my next trip set for November 22-24.
So you all will know, I can now sit like this without O2 suppliment and maintain around 95-97%. I still have to have extra when I try to do anything that is physical. I am very encouraged and hope the next treatment will improve me even more. I really don't expect to be able to do heavy physical work again but if it is to be then I will have been even more blessed. I have had people from all over praying for me and am a prayer warrior and I give thanks to the Lord for what is happening to me. He must have something more for me to do. I was supposed to be dead a few years ago but here I am. If I die now I sure am going to have some mighty mad patients.(joking)
The treatment went well and was really relatively pain free. There are variations from what I have experienced but this is pretty close to what you can expect. If you have any other questions please let me know. I hope that this has helped.
Everett

[Jeannine]

Everett

You must have had a buzz in your ear because I as wondering how you were doing these days. I'm glad to hear you are doing better than you were before treatment. I bet the next treatment will help a bit more as well. It beats going the other way doesn't it? I should have been dead a few years ago too but I carry on. I was a guest speaker at a meeting last month and was invited to speak at a meeting tomorrow evening. Neither of them are stem cell or COPD related. The fact that I can do these things tells me something is working.

I can also sit without oxygen but I still can't dance for more than a minute or so. When I can dance through the entire "Super Freak" song I will consider myself cured. LOL

[Connie]

Everett,

I see where you said: "I can now sit like this without O2 suppliment and maintain around 95-97%."

Can you tell me what were your stats before the procedure. How many liters O2 were you on before and after etc.? Oh and how are you doing without your nightly bowl of Blue Bell? teehee!

Jeannine,

I want to dance with you to "Super Freak" Oh heck! I would be excited if I could just sway back and forth to "Goodnight Irene".

[Jeannine]

I wish everyone could dance to Super Freak.

[Everett]

Here it is hunting season and all you girls want to do is dance!!!!!!!!!!
Connie, I had to keep my O2 at 4 to 5 and now I can get by with 2 to 3 unless I am out at the farm. Then I have to kick it up to 5 again. I couldn't even do anything at the farm before now.

On dancing---

The last time I took Linda dancing I strapped my hunting back pack on with an oxygen bottle with the hose over my shoulder and stuck in my mouth and we danced the waltz until Linda gave out. I never realized that that was the last time we would be out dancing. I do miss it and I know she does too but she never says a thing.

Take care all---

Everett

[Pat]

What good news for you! I also was wondering how your treatment went; it sounds like a success. I guess if we all keep at this we may out live our projected death years. Of course, we could all be killed in a car accident tomorrow. I too believe in the power of prayer and if it is stem cells that work or prayer it doesn't matter as long as we improve! God Bless. Pat

[Everett]

The pollen count on various things have been tough for the past couple of weeks and it has played havock with me and breathing. It's almost like a setback to six months ago. I know it is the mess in the air that is causing it but psychologically it plays on me. Every year they burn the cane fields in Mexico and there seems to always be a south wind that brings the smoke to Poteet just for me Thanks a bunch.We have had unusually high pollen on everything but if that is what it takes for us to have a green year I will take it. Keeps the animals fat without having to feed them everything they eat.
I keep forgetting my mask and even my oxygen. I went off to WalMart tonight without it and was glad to get home to that plastic hose. Needless to say I get my tail chewed on but I deserve it. I am happy to be able to go anywhere without the suppliment. There are good days and bad but the bad ones are getting fewer. I hope that you are right jeannine and the next treatment will give me even more improvement. What a blessing. Prayers are being answered. I'm sure everyone else has to endure the seasonal problems of pollution of one kind or another.
Pat, I think that it is both. HE is allowing the stem cells to activate and rebuild our lungs again. Maybe not like new but at least improved from where they were. I go to my pulmonologist tomorrow for a fev1 testing and I am excited that they will find improvement. Any at all will be a blessing. I think that I have convinced Dr. Syed that stem cell transplants is worthy of investigation. I know that if I show improvement in my volume then he will be getting on the boat with us. I will post the results when I get back tomorrow night.
God bless you all.
Everett

[Everett]

Hi. I have been taking prednisone for several years. My regular pulmonologist Dr. Nassir Syed from San Antonio, Texas has had me on it for three or four years. This past spring he upped my doseage to 10 mg once daily from 5mg. It is okay with Dr. F. They have me on so much meds it blows my mind. I don't care as long as I keep on plugging along. We got a little rain this morning so that should help clear out some of the pollutants from the air. God's blessings to all,
Everett

[Connie]

I am sooooo excited about your improvements and I can't wait to hear about the outcome of your FEV1 test.

[Connie]

I have been holding my breath :eek:(and I don't have much breath to hold) waiting to hear about your FEV1 scores. I hope you're doing well!

[Everett]

Connie--
I am sorry that I haven't gotten back to you all. I got the results back on my retest and I have only improved 1%. I have been a bit down as a results but after thinking about it the key is IMPROVED and not worsened. I go back to see my pulmo Dr. Syed Thursday pm and I may have better news than what I got the day they tested me. I have a class that I go to this Friday and then Linda and I take to the road for Florida and follow up treatment Monday thru Wednesday. I am excited about it and just know that things will continue to get better. Keep me in your prayers. The Power is there.
God bless you all,
Everett

[Connie]

Everett
Improved is one of my favorite words. I like "improved" even better than "no change" which is always good with this nasty disease. I look forward to even better news from your Dr. Syed Thursday. I'll keep you in my prayers for continued success in Florida next week. Drive safe, and take care of yourself and Linda.

[Nancy Appleton]

I am replying to an inquiry from Nancy Appleton.
Nancy, you asked if I would give you some information on what is involved.
I went to Sarasota Florida and was treated by Dr. F. In my case they drew seven vials of blood from which they collected the stem cells. The next day they transfused the stem cells back to me in an I V. They also gave me another substance I V that day. The next day they treated me again with another substance. Then I met with Dr. F. again and discussed what I could hopefully expect from the treatment. He gave me some medicines that he wanted me on and a prescription for some Glutathione and another med. He also wanted me to come back in three or four months for a follow up treatment. The first treatment was on August 19-21. As it turned out, he is enthusiastic that I am improving and wanted me back in October but there was no way that I could get another trip in. We have my next trip set for November 22-24.
So you all will know, I can now sit like this without O2 suppliment and maintain around 95-97%. I still have to have extra when I try to do anything that is physical. I am very encouraged and hope the next treatment will improve me even more. I really don't expect to be able to do heavy physical work again but if it is to be then I will have been even more blessed. I have had people from all over praying for me and am a prayer warrior and I give thanks to the Lord for what is happening to me. He must have something more for me to do. I was supposed to be dead a few years ago but here I am. If I die now I sure am going to have some mighty mad patients.(joking)
The treatment went well and was really relatively pain free. There are variations from what I have experienced but this is pretty close to what you can expect. If you have any other questions please let me know. I hope that this has helped.
Everett

Dear Everett,
Thanks so much for your info. I am very excited for you. How are you doing and have you gone back? Please keep me posted.
Thanks Nancy Appleton
I just figured out how to use this system, well maybe, so I just saw your
post. Could you email me the reply also so I will be sure I get it at
nancyappleton@mac.com
Thanks again

[barbara]

Nancy - You should get an automatic notice when anyone posts on a thread you have also posted on.

[Bev12452]

Good Luck Everett have a safe trip I hope you have continued success with your treatment I have a date of Dec 7 but I have lost so much weight again I need to call Dr F and talk to him about it anyway I will wave as you go by Ocala

[barbara]

Bev - I hope you can find a way to add some pounds. What about protein shakes?

Everett - Have a safe and fruitful trip.

[Bev12452]

I have been using the colostrum 1/4 twice daily should I increase it if I drink a shake I get full and then I won't eat a meal I was up to 110 before my last treatment I don't know if it has anything to do with it has anyone else lost weight after treatment and now I have the shakes oh well tommorow is another day hope all are well

[Nancy Appleton]

Dear Bev,
I am not sure what I am doing with this tread idea but I am hoping you
will tell me if you went to Feinerman for your stem cell treatment and how you did.
Thanks
Nancy Appleton

[Bev12452]

Nancy I also went to Dr F I went out to San Diego the first time back in 2007 and had Umbilical stem cell treatment I didn't get worse but I didn't get better I went to Dr F in Aug and I still haven't gotten off the o2 maybe I am hoping for to much I can't get off the line unlike Everett my numbers drop like a lead sinker they bounce back but not the results I had hoped for but I am eligible for a transplant so my lungs are really bad I guess I should be thankful that I am stable each person reacts differently and you may get great results I wish you the best and if there was something else you need to know please feel free to write I will answer to the best of my ability Good Luck
Bev

[Jeannine]

Bev

I haven't lost any weight. I am about the same if not a few pounds heavier. I used to take 1 teaspoon of colostrum every day but stopped because I felt it was causing a weight gain. Sounds like your lungs are hyperinflated which is why you get full so quick. Have you looked into LVRS?

[Nancy Appleton]

Nancy I also went to Dr F I went out to San Diego the first time back in 2007 and had Umbilical stem cell treatment I didn't get worse but I didn't get better I went to Dr F in Aug and I still haven't gotten off the o2 maybe I am hoping for to much I can't get off the line unlike Everett my numbers drop like a lead sinker they bounce back but not the results I had hoped for but I am eligible for a transplant so my lungs are really bad I guess I should be thankful that I am stable each person reacts differently and you may get great results I wish you the best and if there was something else you need to know please feel free to write I will answer to the best of my ability Good Luck
Bev
Dear Bev,
You told me what I wanted to know or did not want to know. I am sorry stem cell therapy did not work for you but I am glad you have a lung transplant coming up. Please keep us posted. I certainly want to hear good news.
Thanks for your help.
Warmly, Nancy Appleton

[Bev12452]

I am not eligible for that procedure my emphysema is too wide spread to qualify I was hoping for the stent but that too will not work on me the only option is the transplant and I am not ready I have decided to put it in Gods Hands and let what ever happen I did decide to go back and see Dr F one more time and see if I become a miracle that is what I want for Christmas lol if only it were that easy
Bev

[barbara]

Bev - As I mentioned before, I don't believe that one treatment is going to benefit someone with a severe condition. You need to hit it again and again if at all possible. Also, do everything you can to stay well and put on some weight. I truly hope that you can stay positive and become that miracle too.

[Bev12452]

Thanks for the good wishes I made the mistake of going to my Dr and in his infinite wisdom decided I was depressed so he put me on 10 mg paxil now Mg may seem very light but it knocked me on my butt I couldn't stay awake I would get up have coffee back to bed and if I tried to sit up I would hold my head for fear it would drop on th counter trying to wean off now but the shakes are bad I can not have anything with caffeine no candy soda I should have just stayed away from the medical field and continue on my own path I was doing fine before now I am afraid to drive hopefully this will all pass soon and life will return to the way it was I don't know why they try to push all the drugs I should have ignored him and not have it filled but I thought he had my best interest at heart wrong well thats my story for the day

[barbara]

A great natural remedy for depression among other things is SAMe. You might give it a try. I take it morning and night. The best price I have found for it is at Puritan's Pride.

[Everett]

Bev--
I didn't know you were going through all of this and I am sorry that I had not kept up with you. I just got back for Sarasota and my second treatment. I am improving. I am leary of any Dr. giving me anything that may conflict with the stem cell treatments that I am getting from Dr F. My internist doesn't understand this but I am adament about it. If your doctors don't have a working knowledge of emphysema, CODP and the multitude of other pulmonary diseases and stem cell transplants/treatment and research then find another doctor that does. I am having to lead some of my doctors on the stem cell treatment path. Lack of knowledge is a very dangerous thing where we are involved. I am learning this the hard way from being hard headed (as Linda says).
I agree with Barbara. Sometimes it takes more treatments. Unless Dr. F. abvised that it would not do any good then I would follow his advice and go back to him if it is something that you yourself can do. I nearly went to South America for treatment and that would hve been a disaster. The Lord has guided me well.
Please keep us posted on how you are doing. God bless you.
Everett

[Bev12452]

Barbara thanks again for more info I just read an article in a magazine about same and I am going to order some after I get back from seeing Dr F I want to check with him first I have started taking one teaspoon of the colostrum during th day and I have gained one pound so I am happy my appetite has improved so I guess I am over that hump and have been weaning off the paxil so I even feel more alive the strange part of the drugs is the Dr does heart stem cells over seas so I thought he would understand boy was I wrong Everett like you I believe God will bring me where he wants me I know I have a purpose for going through this just don't know what it is yet hope all have a great day

[Jeannine]

I think SAMe contains glutathione as well.

Bev - glad to hear you're doing well with the colostrum. You can take a teaspoon of colostrum twice a day if you want. It won't hurt you but will definitely make you gain some weight.

[jgp]

bev; i lost 50 lbs when diagnosed, also depressed my gp put me on a drug remeron for depression also weight gain. well it helped a little with depression but i wanted to eat the kitchen sink if you put ketcup on it. long , and short, i gained 12 lbs in 2 weeks. i hope this might help. God bless.

[gillybabe10]

Bev--
I didn't know you were going through all of this and I am sorry that I had not kept up with you. I just got back for Sarasota and my second treatment. I am improving. I am leary of any Dr. giving me anything that may conflict with the stem cell treatments that I am getting from Dr F. My internist doesn't understand this but I am adament about it. If your doctors don't have a working knowledge of emphysema, CODP and the multitude of other pulmonary diseases and stem cell transplants/treatment and research then find another doctor that does. I am having to lead some of my doctors on the stem cell treatment path. Lack of knowledge is a very dangerous thing where we are involved. I am learning this the hard way from being hard headed (as Linda says).
I agree with Barbara. Sometimes it takes more treatments. Unless Dr. F. abvised that it would not do any good then I would follow his advice and go back to him if it is something that you yourself can do. I nearly went to South America for treatment and that would hve been a disaster. The Lord has guided me well.
Please keep us posted on how you are doing. God bless you.
Everett
Hi Everett - my husband has pulmonary fibrosis and had one stem cell repalcement 2 years ago which gave great results. Unfortunately he is now going downhill again at an alarming rate and we are considering another stem cell repalcement with Dr F in Miami where he now is. Would you recommend him
, is he worth it?
I would appreciate a replay
Thanks Gill

[barbara]

Hi Gillybabe10 - I am not Everett, but in case he does not reply, Dr. Feinerman has changed his regimen dramatically since Everett got treatment for COPD. I do not know if he has changed it for IPF. The changes he has made may not be something that would be included in IPF treatment. I'm not a doctor, so I really couldn't say. Hopefully, someone that has had treatment recently with Dr. Feinerman will post. He does not use stem cells exclusively in his therapy for COPD. I believe that to be a good thing as stem cell treatment alone for COPD, in general, has not shown any great, lasting response for many.

I wish you and your husband the best and hope you will let us know what path you choose. Thank you for your participation in the forum.

[gillybabe10]

Hi Gillybabe10 - I am not Everett, but in case he does not reply, Dr. Feinerman has changed his regimen dramatically since Everett got treatment for COPD. I do not know if he has changed it for IPF. The changes he has made may not be something that would be included in IPF treatment. I'm not a doctor, so I really couldn't say. Hopefully, someone that has had treatment recently with Dr. Feinerman will post. He does not use stem cells exclusively in his therapy for COPD. I believe that to be a good thing as stem cell treatment alone for COPD, in general, has not shown any great, lasting response for many.

I wish you and your husband the best and hope you will let us know what path you choose. Thank you for your participation in the forum.

Hi Barbara
Thaks for your reply - I did not realise you had, so hence the long delay in replying - wehave decided to go down the RMI route in Tijuana which is adipose stem cell. We are due to go 18th Jan 2012, if my husband can last that long - he is still deteriorating at a fast rate and as we live in UK it is a hard slog for us to get to the US and then on to San Diego.
Does anyone here have any expereince of stem cell for IPF at RMI - I would lvoe to hear from anyone who has please.

[barbara]

It will be a difficult trip, but RMI is a reputable company. I wish you both the very best and hope that the treatment helps improve his quality of life. Please keep in touch.

[gillybabe10]

Well we did it! He had the Stem cell repalcement on 20th Jan. To date i would say my husband is worse if anything - certainly much worse than before we went to Tijuana. However, it is early days as yet and I guess the new stem cells need time to adhere to the lungs - certainly Dr Perez at RMI thinks so. So fingers crossed and prayers please for his swift recovery, or at least some improvement.

[barbara]

I am sure your husband is exhausted. It is a difficult task to travel any more even for people who are well. I do hope he feels better soon and that he sees some improvement in his health. Please make sure he gets plenty of rest and relaxation.

Thank you for letting us know and do keep us posted. When you have time, if you could elaborate a little on the treatment itself, it would be helpful to others I am sure.

[eldave]

Did you experience an improvement after treatments with Feinerman? How many treatments, and what was the total cost? My husband, 78 yr.old, is still working at his desk job as an officer in a securities firm, but he is getting worse, and I want to know if it is worth it to pay for a stem cell treatment. I love him very much and am willing to pay whatever is within my means for an improvement in his quality of life, which is quite poor at the moment. Regards, ELDAVE

[barbara]

Eldave - I just had treatment earlier this month, but right now I will state that the treatment I had is the best one I have ever had and the simplest. It included more than just stem cells which is truly what I feel has made the difference. I haven't made a full report wanting to err on the side of caution since it hasn't been that long since I was treated. I had a series of treatments over a 3 day period. Dr. Feinerman's prices are very reasonable, but my suggestion is to contact him directly to find out if he feels your husband might benefit from therapy. Patients react differently. I am younger than your husband and you don't state how advanced his condition is, but for me, I am pleased with the overall experience and results so far.

Unlike, some doctors/companies, there is no charge to have a consultation with Dr. Feinerman, so you have nothing to lose by calling him. I am not aware of other companies utilizing the additional therapies as he does. Stem cell therapy alone, for me, has reduced inflammation, but it hasn't done anything else. (unless you want to count the times I became seriously ill after treatment). I was looking for more and that is why I had treatment with Dr. Feinerman.

Please continue to visit the forum. I will be posting more as time goes on. I simply do not want to jump the gun, but right now, I am giving his treatment for COPD two thumbs up and a high five.

[Connie]

Barb,
How exciting! Boy that was quite a road trip! How much fun was that? I love a good road trip! I can't wait to hear all the details. Did you have your PFT's done before you went this time? and when will you be having them again? I am looking looking forward to hearing the good news about how much improvement you and Jeanine have from this latest treatment. Stay positive!

[Jeannine]

We received a basic PFT prior to treatment as well as an EKG, and they also took our blood pressure and temperature.

It was the most complete treatment I've received in all of my pioneering with stem cell treatments.

[barbara]

We also had an allergy test. As Jeannine said, the treatment was very complete. Lots of individual attention and a complete consultation as well with Dr. Feinerman. He suggested I have an echocardiogram which I had late last week. I don't have the results of that yet. He said a lot of COPD patients he sees do have pulmonary hypertension or cardiac problems. My EKG was a little concerning, so I took his advice.

Connie - It was quite a road trip. We took the southern route to avoid the snow. We left the morning after we got 18 inches of snow at our house. The most trouble we had was getting out of our driveway. We got stuck and it delayed us for an hour. Thank heavens for kitty litter. Half a bucket of that under the tires and we were finally on our way.

[Connie]

I see my cardiologist annually and he does an EKG and Echo every year. My primary physician, insisted years ago that I keep a close look at my heart as COPD often results in cardiac problems. I had my last check up and test in Sept. and the cardiologist was once again amazed at how well I am doing. He said that most people with as severe COPD as I have and for as long as I have had COPD have thickening on the left side of the heart and mine shows none. I believe my weekly acupuncture sessions and staying active with my pulmonary rehab has a lot to do with how well I do. The cardiologist laughed at me the first time I told him that but now that he has met my acupuncturist and several other patients who go to him regularly that are doing better than to be expected he isn't laughing anymore.