Subscribe to:
Post Comments (Atom)
SCB Founders
Casey Nabavi & Dr Burton Feinerman
At the Clinic - April 5, 2007
Left to Right: Jim, Jeannine, Barb, Ed Johns and Rita
At the Clinic - April 5, 2007
Left to Right: Dr Rodriguez, Casey Nabavi, CEO of Stem Cell Biotherapy, and Dr Romero
48 comments:
Jeannine in NH
Age: 55
Status: Severe COPD
FEV1: mid 20s
Oxygen: 24/7 2LPM while resting and sleeping; 3LPM walking and exercising.
Medications: Albuterol, Spiriva and Advair
Vitamins: Multi-vitamin, NAC and COQ10 at 300mg
More about Jeannine in NH
I use my albuterol inhaler as needed (typically once or twice a day), Advair 50/250 twice a day, Spiriva once a day.
I am short of breath when I try to climb stairs, sweep the floor, walk too far even with oxygen. I cannot walk anywhere farther than 50 feet without my O2.
I am on O2 24/7 and have been for about a year. I am still SOB with it most of the time, especially while using my concentrator at home. I do better with my portable Spirit on the pulse mode. I am at 2 lpm while sitting and 4-5 while walking.I usally just leave it on 4lpm. I cannot maintain even a 90 saturation level when walking anywhere. I always dip to the 85-89 level. Without O2 I fall into the 70's or 80's. I never get over 95, but I do live in Denver. My FEV1 was 37 in December, down from 42 two years ago. I have my moments when I actually can do things and feel okay, but usually I am SOB while doing almost anything that requires any effort whatsoever. I take Foradil, Spiriva, Qvar (I have asthma too). I don't use albuterol very often. I didn't do well on Advair. Today I went out to help worm my horses and could barely function at all. I worm them every 10 weeks and look forward to seeing what 10 weeks from now will hold for me.
I forgot to add that I also use NAC 500mg 3 times a day, ultrasound treatments, energentic balancing, and supplements such as B complex, magnesium, organic minerals, etc. I don't cough very much, sleep about 6-7 hours a night like a rock and have my worst SOB usually in the morning when I get up and about 10 hours after I use Foradil. It never lasts 12 hours. I am 57 years old and weigh about 150 pounds. I didn't use to weigh this much, but I gained 30 pounds in about 2 weeks when I was on prednisone a couple of years ago. I can go about 30-35 minutes on the treadmill at 3.0 mph if I use my portable O2. I cannot do that much with my concentrator. I have a lot of energy, but am always SOB without O2 and a lot with it.
John in NJ
Age: 59
Status: Severe COPD
FEV1: 31% (two years ago)
O2: 2LPM at rest. Turned up as needed
Medications: Spiriva, Flovent, Foradil
Stairs want to kill me and I can only walk about 100' fefore having to stop
I was wondering if this stem cell treatment is a one shot deal of if it could be repeated after maybe a year to increase your lung function even more. Anyone know?
I spoke with my accountant yesterday and questioned him about claiming a medical deduction for the stem cell procedure because it will take place outside of the country. He said yes and that he would also claim the flight and accommodations. I love a good deduction.
John in NJ
Thanks for the heads up on the tax deductions. That should save me tons of money!
When I spoke with Dr Feinerman I asked him about the need for a booster. He said the only peoplewho need boosters are those with spinal cord injuries.
John - Do you have an appointment? Have you had your consultation with Dr. Feinerman? I will add you to my list to e-mail to. I am feeling pretty good this week. I think it is because I have been doing the treadmill more. I still have my O2 cranked up as always. I have been able to avoid a cold that my husband had a week ago and for me that is something. I forgot to mention too that I use oil of oregano (4 drops under the tongue each morning - nasty tasting stuff) and I also listen to 20 minutes of UCure tapes each night. They try to convince me to get rid of stress and think I'm well.
I have not made an appointment yet. I figured I would wait and see how you make out. God, I feel like a little kid, “no, you go first”. I wish I exercised more but I work a full time job that has me out of the house for about 12 hours a day. By the time I make dinner can clean up I’m about used up. As far as colds go, I’ve managed to not have one for about 4 years now. The only thing that is different is that I get a flu shot every fall. I wonder if there is a connection.
Jeannine - What do you think of these guys making us go first? I guess nobody twisted my arm. John - I was just wondering if you had at least gone through the process of the application and talking to Dr Feinerman. They seem to require that and the doctor's appointments are getting quite far out according to Ed Johns. I know what you mean by being exhausted by the end of the day. I am just pouring on the treadmill before I go because Jeannine was told the better shape you are in, the better the procedure works. Barb
Barb
John is a friend of mine and he's waiting on me to see what happens.
If this works, I think we need to contact Ted Koppel so he can get his wife Grace the same treatment. Imagine the press coverage this treatment would get then?
Jeanine
Please don't tell Ted Koepple about the treatment until we all have had it. They will get so many calls, ther wo'nt be room for the rest of our group.
Dolores
Dolores
I was planning to wait at least 3 months and also have another PFT test before making it public. I think September time frame would be good.
We want to help others too.
I was wondering why Dr. Feinerman told June that some people require a booster. He told me not for COPD. If anyone else has an upcoming interview with Dr. Feinerman let's pin him down on that question.
June said Dr. Feinerman told her that some people will require a booster. I don't know if he meant people with COPD or not, but she took it that way. He told me not with COPD. If anyone else has an upcoming appointment to talk to him, let's pin him down on this question.
I didn't mean to make the same comment twice about June's conversation with Dr. Feinerman. How do I delete a comment or don't I? I thought I hit the preview button, didn't see the first one posted and figured I messed up. I wrote it again and now there are two. Is there a Blog 101 class for dummies?
Barb
The only people who need a booster are those with spinal cord injuries. I asked Dr Feinerman and Casey this question and both gave me the same answer.
I was also told by the doctor to continue taking my medications for three months even if I have improved.
Dr. Fienerman said to call if we have questions.We should find out what's going on.....Dolores
Just wanted to post and have it down for my record that I am total blotto SOB tonight. It rained all day and I don't know if that's it or what. I can barely let my dogs out without totally gasping and having to lean on something. Hopefully, it is just a short spell and tomorrow will be better. Also, as of tomorrow I am out of Qvar. I have 2 unopened Advair disks that I may use rather than buy more Qvar. I just never have liked Advair very well because sometimes I have a hard time even inhaling it. Foradil is so easy to inhale, I have gotten used to it, but I can't use that and Advair. I will see how I feel tomorrow.
I am feeling better. It is one week until I leave and I am jittery. Not scared of the procedure, just excited. Jeannine and I will keep you all posted as we go along. I hope the rest of you will start posting on the blog.
Hasta la vista everyone. I am so excited to be meeting Jeannine and her husband. I think if nothing else, I have certainly met some nice people on line. The countdown has begun.
Hasta la vista everyone. I am so excited to be meeting Jeannine and her husband. I think if nothing else, I have certainly met some nice people on line. The countdown has begun.
It's been approximately 24 hours since I received my stem cells. Here's what I have noticed so far.
About 2 hours after the treatment I started coughing up more mucus than ever before and the post nasal drip seemed to lessen.
Day1 - 24 hours post-cells
There was less SOB this AM when I woke up and I took my shower without becoming so SOB that I had to bend over until it stopped. No SOB today until after I dried off.
I can take slightly deeper breaths. Could this be a placebo effect? Will keep you posted.
Pat in IL
Age: 60
Status: Very severe COPD (emphysema)
FEV1: 13%
Oxygen: 24/7 3 LPM
Medications: DuoNeb (3-4X daily), Advair 250/50, Spiriva, Allegra D, Beconase AQ nasal spray (also have sinus/allergy problems), Toprol, and Lexapro
I should note that my FEV1 was measured upon admission to the hospital for the 1st time. I'm to be retested in May or June and expect to have a better reading since I'm not smoking any more and hopefully won't be experiencing an exacerbation at the time of testing!
Vitamins: Centrex Silver and Ester C (when remembered!)
I can hardly wait to hear from Jannine and Barb upon their return home. I've been thinking about you guys every day now!!! And, Jeannine, I'm sure it's not a placebo effect you're feeling! YOU GO GIRLS!!!!!!!
Sorry -- forgot to mention that I was hospitalized and diagnosed on August 3, 2006. Any Blog 101 classes scheduled soon???
Pat - would you give me your e-mail address so I can add you to my list? I am feeling good again today. More coughing and hoarseness than usual, but still doing good on not being SOB. It is so wonderful not to have that horrible ache or whatever it is after you do something like climb stairs or walk 20 feet without O2. That is gone. Forever I hope! Barb
If anyone missed my two e-mails that I sent to the Pioneer group while I was on my trip to have stem cell treatment, just let me know and I will be glad to send you a copy. My brain cells did not get the boost that Jeannine's did as she had sense enough to post on the blog. I just want to make sure everyone has the practical info they won't get from Stem Cell Biotherapy and also the new financial info from Casey.
More news today about stem cell break throughs. Go to...
http://www.cbsnews.com/stories/2007/04/10/health/main2668543.shtml?source=mostpop_story
I was sitting in a restaurant tonight and I felt like I had too much O2 flowing in. I had my O2 on 1.5 liters and my sats were 98. I never ever get 98. I turned it down to 1 while I sat there. I usually need 2-4lpm. It was great to see a 98. I know there will be more days like this. I have a real scratchy throat and a cough which is what we were told might happen. Nothing I can't deal with.I just know we are getting better and better.
The following questions and answers from my conversation with Dr Feinerman last night.
1) How many procedures have you done?
A) Hundreds
2) Have you published any papers on this procedure?
A) I'll send them to you in the mail. Too big to email.
3) Has anyone ever died from this procedure?
A) No.
4) What might I expect from this procedure?
A) Everyone is different. Some are cured but everyone should realize improvement
5) Why don’t our immune systems attack the stem cells?
A) The stem cells are too immature to be seen as a threat by the immune system
6) What is the possible adverse effect?
A) 2 cases resulted in a rash.
7) What do you need from me?
A) Current medical records, x-rays, and breathing test. Anything you have.
8) How long will the treatment last?
A) Indefinably.
9) Will I need to come back every year?
A) No, it’s a one time treatment
Great questions John. Jeannine and I did get the technical papers before we left. They were really too technical for me, but he will send them. Are you going to make an appointment to go? I am much less hoarse today, but now I feel a little light headed (and no it is not because I am blonde). I can't believe it has already been one week since we were in Tijuana. Just about this time of day too. One thing Casey mentioned in his follow up e-mail is that in about 3 weeks our skin should feel rejuvenated. I am looking forward to that.
Barb, you asked for my e-mail address. It's sspianopatty@aol.com. I ask that everyone please add me to your distribution lists. I haven't had any tests performed since my diagnosis in August 2006 when my FEV1 was 13% of predicted. They're going to give another test in May/June, at which time I'll be in a better position to contact Dr. Feinerman. In the meantime, I'm following each of you intently!
Thanks!
Barb...rejuvenated skin!!! I'm not going to lose my wrinkles am I? I worked hard to get this way.
John
I feel the same way John does. I told them in no way do I want to lose any wrinkles or feel younger. What kind of a treatment is this anyway? I ended up having to give in and am awaiting my rejuvenation any day now. I'm also awaiting my French champagne promised by a certain someone named Nassin.
Feeling really like I have a cold today. That is what we were told would probably happen and it has. At least we're normal I guess. Jeannine is feeling the same from what she said. I put in a call to Casey to see how long this might persist, but I haven't heard anything. I will let you all know if he calls me.
Did you get a list of things to do in case of *.*? Like you feel you're getting a cold. Should you contact a doctor, wait and see what happens, or . . . .? Or you get a rash now that you're home - what do you do? Just wondering about their after care?
In case anyone missed the e-mail I sent, I called Dr. Feinerman. He prescribed Ceclor for Jeannine and I because he said we shouldn't be having this much trouble. He also told me that we should call him anytime 24 hours a day if we have any medical questions or concerns. He was very caring and called the pharmacies for us to get a prescription and he did it right away unlike a person's own doctor's office where you wait forever. I wish I had known this before. I wouldn't have waited to call him. I guess that's what being a Pioneer is all about. Live and learn. I took one Ceclor a couple of hours ago and I feel a little more energetic. I just have a nasty cough and head congestion. Nothing in my chest and no fever for me.
THIS IS JUNE. I ABSOLUTELY NEVER
SAID DR. FIENERMAN TOLD ME WE WOULD
REQUIRE A BOOSTER AFTER THE CELL
TREATMENT. HE NEVER SAID THIS TO ME. PLEASE CONSULT YOUR
ARCHIVES,
June - who are you posting to? I saw your post, but am confused as to what you are referring to. I am glad to see that you got on the blog. Try to post your stats if you don't mind. It would be nice if we had everyone's on here.
Is the booster a follow up that is required for everyone? I was under the impression that the stem cell procedure was a one shot deal. Might it be that boosters are needed for people that are in worse shape or don't respond as well as the doctor would like? I'm a little ignorant on this.
John
John
As far as I know, only spinal cord type issues require a booster.
Spinal cord injuries or MS. that's what I was told and I even asked Casey twice.
No fear John - hell if it makes me feel as good as I do today. I'll go for an annual booster and work a second job to pay for it.
Jeannine - I must caution you about using profanity on the blog. I have joined the internet police. HAHA I am glad you are feeling so good - feel free to say it however you want. I am hoping we can get some answers for our new Pioneers about the Alpha 1 emphysema that they suffer from. Larry will start his journey of little cells doing crazy things inside of him on Monday, May 7. I hope those little cells like their new home and throw the old deadbeats out quickly and permanently. Yes, I am getting somewhat deranged playing the waiting game. I am now naming the little fellas, but with 150 million it is going to take awhile.
Kathy in TX
Age: 56
Status: Sever COPD
Fev1: 37% took in Feb.2007. First dx'd at 27% 3 years ago.
Qxygen: 24/7 2L rest 3-4L walking & exercising.
Medications: Spiriva, Advair (250/50), Xopenex and xanax as needed.
Vitamins: Multi.,Vit.C & D
Looking forward to following your progress. Praying for all to go well. John you made me laugh about the wrinkles....boy did we all earn those..LOL
Have any of you investigated online this Dr Burton Feinerman?
He appears to be a physician practicing in Hawaii, and strange combination of medical areas, like pediatrics, anti-aging, cosmetic dermatology - no board certifications listed ---doesn't look reliable to me. I'll pass.
graysmoke
Dr. Feinerman does need to update his profile on the internet. He has recently written a book about stem cell therapy that should be available in August. If you have comments for discussion, we would appreciate that you visit our forum at www.stemcellpioneers.com. The blog we try to reserve for updates on our progress and discussion among the Pioneers as we call ourselves. Dr. Feinerman is currently at a stem cell conference in Australia and went there from one in Thailand. He would willingly discuss stem cell therapy with you at anytime after June 25. It is certainly within your rights to remain ill. I chose not to.
Tony in Dallas
Age: 59
Status: FEV1=25%
Single lung transplant Feb 11,2001
Currently in chronic rejection.
Possible second transplant if I can qualify. If not, prognosis is 3 years.
I am more than excited about this forum and stem cells. This could save my life.
I have Severe edema and a Celluilitis infection.
Get SOB very easily but recover quickly.
On 5lpm 24/7. Wear BiPap w/5lpm set on 24/16.
Medications:
Prograf 1.5mg/day
Cellcept 2000 mg/day
Gancyclovir 500mg/day
Prednisone 10mg alternate 7.5mg days
Bactrim single
Zithormax 500mg MWF
Methotrexate 7.5mg Wed
Digitek .125mg/day
Diltiazem 240mg/day
Klonopin 1.5mg/day
Protonix 40mg/day
Lasix 60mg/day
Clonidine .1mg/day
Uroxatral 10mg/day
Neuroontin 1200mg/day
Singulair 10mg/day
Zyrtec 10mg/day
Fosomax 70mg 1 per week
Lipitor 20mg/day
Afrin/Dexameth 2.4 1spray at bedtime
Mega-Chel Multivitamin 4 per day
Glucosamine Sulfate 500mg/day
Cal/Mag + D 2/day
B6 100mg 1/da
Imitrex 100mg for migraines
Vicodin for migraines
Xanax
Lots of pills.
Tony in Dallas
Post a Comment