Taking the Plunge

[Jim]

Hi. My name's Jim and I'm an alcoholic. Oops. Wrong website ....

I've been lurking here for a while in my quest to gain more knowledge about stem cell therapy, how to go about getting it, people's reactions and results, in short, everything. Not just here, but all over, and lots of it ... my Google is about wore out (I think I broke it this past week, according to news reports). I'm sometimes on this computer for five or six hours at a time, searching all sorts of word combinations and following leads and links.

I was diagnosed with emphysema in 2003 and, like many others, I realized I had problems long before I was diagnosed. It was the day that I took my first PFT that I realized how bad my lungs were and I never had another smoke after that test (I didn't even need to wait for the results). I've also been on LTOT since then and tried out just about every available med (except theophylline and prednisone, I'm in no hurry for that). My condition has worsened over the years and I just recently had two pulmonary docs recommend that I get evaluated for a transplant. (I think that's their way of saying that they give up.) An evaluation date has not yet been set, but the idea of transplant is not all that attractive to me. I'm sure everyone knows the reasons why. So that's when I began investigating the possibility of stem cell therapy, and the more I read, the more I'm convinced it's the way to go. The transplant option can stay on the back burner as a fallback position (assuming they even accept me as a candidate).

I have chosen Dr. Vina for several reasons. I've been in touch with his representative for preliminary processing and barring any unforeseen problems, we're looking at July 24 in San Salvador. I also sent an email to Nassin and he was kind enough to call me even though he was away on a trip.

There are actually two of us from my little town that are going on this journey. A lady friend of mine will be going as well, but I feel it's not for me to speak for her here. She's lurked here as well, and I'll let her make her own introductions if she cares to. We both go to the same pulmonary rehab and when she heard about this opportunity, she got as excited about it as I am. Maybe even more so.

I'm not really much of a poster, but I figure that I have something of an obligation to others who will come here, just as I have benefited from the postings of others. I'll do my best to make some sort of record of my experiences and results.

I had a PFT in September of 2008 showing FEV1 at 29% and my diffusion was fairly poor. I've had an exacerbation since then so I'm guessing my numbers will be a bit worse now. I have a new PFT scheduled for June 11, so that I can give them some more recent data.

So anyway, hello to all and thank you for sharing your experiences here. I hope to make my own small contribution. Special thanks, of course, go to Barbara and Jeannine for all they do.

- Jim

 

[Jeannine]

Jim

Thank you for the kind words. I am very anxious to hear of your experiences with Dr Vina. He was mine and Barb's first choice but the langugage barrier at that time proved to be more than we could deal with and the distance to fly to Buenos Aires seemed overwhelming at the time. I saw that you will be receiving treatment in San Salvador which is much closer.

I hope you will keep us posted on your treatment.

I wish you all the best for a safe trip and a successful treatment.

 

[barbara]

Yes, Jim thank you for the nice comments. Jim and I have corresponded previously and I told him that the trip to Buenos Aires and then on to San Nicolas is way beyond what I could have done when I first had therapy. Nassin did it, but then Nassin, is sort of like Superman. Because of Nassin, Dr. Fernandez-Vina is now treating on a regular basis in San Salvador which is much easier to get to than San Nicolas. I do speak good enough Spanish to get by, but I cannot make trips of the type required to get to Argentina. Dr. Fernandez also has a rep that speaks English now, so there have been several improvements.

I do hope you see improvement. Some do, some don't, but I am like you in that I am not interested in a transplant whatsoever when stem cell therapy may provide the healing we need without a lifetime of anti-rejection drugs and super cautionary living, not to mention that someone else's lung might not like me from the get go and then where would I be?

I will also tell you that Nassin takes Stem Cell Advance like many of the rest of us. I don't want to continually harp on the subject, but this is a good product and relatively inexpensive. It is a great complement to stem cell treatment.

I really appreciate your posting on the open forum. I think it will be useful for you to have your PFT results prior to treatment. I hope you and your friend get good results. I believe Nassin has had 3 treatments with Dr. Fernandez. I got to visit with Nassin in February and he looks absolutely fantastic. He travels all over the world. He is truly someone who changed my life.


.

 

[Mysty119]

Jim

Welcome, Jim. I see you approached this forum much the same way I did. Lurking and reading and researching. Funny how we do that. I know exactly what you mean about preferring not to go the way of transplant so fast. I did the same exact thing.
As for your words to Barb and Jeannine, you are right, they DO do a lot for all of us. I had the pleasure of meeting both Barb and Nassin in February. She's quite a lady, Barb is. And Nassin is the warmest, kindest man. I was hoping to meet Jeannine too, but she had gotten ill and had to postpone her trip. Both ladies are hard working and very kind people and fully appreciate what we all go through with our diseases.
Please keep us informed of your journey. And again...welcome!

 

[Jim]

Thanks!

Thanks very much for the warm welcome and the friendly comments. I made the mistake of watching two videos on YouTube about bone marrow aspirations and my tummy was doing gymnastics. But then, when I stop to think about the butcher job you get with a transplant, I think I'll find the courage to go through with this!

Rehab calls .... thanks, folks!

- Jim

 

[Jim]

Today's PFT

I had my pre-treatment (and baseline) PFT today. It's a good thing I anticipated the results because otherwise they would have been pretty discouraging. Just since last September my FEV1 volume is down 15%, the FEV1 %-predicted is down from 29 to 27, and my FVC took a pretty drastic drop, almost in half. This, in just nine months time, all the while putting in six pretty tough hours per week in pulmonary rehab. This just goes to illustrate what Barbara is always talking about ... the inexorable PROGRESSION of this disease.

If I can slow this progression down, I'll be a happy camper. I certainly don't anticipate being magically transformed into a teenager again.

I think I've mentioned (in private email, if not on here) that I'm also pursuing the transplantation route basically to have as an extreme fallback position. I've been scheduled for the week of July 6th for full evaluation in St. Louis. And it looks like the SS trip will take me away from home from about July 22 to 28. July looks to be a busy -- and strenuous -- month.

 

[barbara]

Jim - I believe that your stem cell treatment will stop the disease. You sound like I was - going downhill quickly. That's when I knew I had to get serious and do something. I sincerely hope you will never need to go through with a transplant and that the stem cell treatment will help you. You may need more than one, but to even stop the progression is a mighty good thing. I do advise that you continue taking Stem Cell Advance. My second treatment from Dr. Steenblock resulted in a massive harvest of stem cells and I attribute it to the Stem Cell Advance that I had started to take prior to that treatment. I had to be infused for an additional hour over the first treatment. That's how much more Dr. Steenblock was able to get from me. I was antsy wanting to go eat lunch and he kept telling me that there was still a long way to go. I couldn't believe it and I think he was pretty surprised as well.

One thing that Dr. Young and Dr. Steenblock and many of the other professionals that help us on this forum advise and that is to get plenty of rest after your treatment. Your month sounds exhausting, but do yourself a favor when you get home and take a break and give the stem cells time to do their work. They do that the best when you aren't wearing yourself out. I would even slow down on the exercising for a few weeks after treatment.

 

[Jim]

Change of plans

Well, it turns out that I may have bitten off too much too soon. In trying to make arrangements for the evaluation so soon, I ran into a couple of roadblocks that I just couldn't get past. Mainly due to their requirement that I be accompanied at all times for all four days of the evaluation. But it may be just as well. As remarked, two major events in one month might have been more than I've got the stamina for. I'll try to set something up for later in the year.

Yes, Barbara, I'm with you on the Stem Cell Advance and I've increased my dosage to two tablets a day now. I'll probably step up a bit more in the meantime. And I'll take your advice on the exercising after treatment. It will probably come as no surprise to you that the same drill that was comfortable for me six months ago is now pushing my limits pretty good.

Thanks for the help and support!

- Jim

 

[barbara]

Jim - You must be disappointed, but yes, I would think having someone with you at all times during the treatment period would be a good idea. Please keep us posted.

 

[Jim]

Post-treatment report dated 09 AUG 2009 (D+16)

Post-treatment report dated 09 AUG 2009 (D+16)
(Treatment was on 24 JUL 2009)

Beginning on 01 AUG and continuing since, I have limited my use of oxygen to sleep and periods of exertion. SpO₂ has consistently remained above 90. For the first week, it averaged about 94, and for the past few days has averaged about 95, with common readings as high as 97. By way of comparison, prior to treatment I eliminated oxygen use only when my SpO₂ was higher than 90 with no shortness-of-breath (SOB) problems. This was probably about only half of my time at-rest. SpO₂ then averaged 92, and if it ever decreased to 90 or below, I restored oxygen. Last night, I slept quite comfortably without oxygen, with no negative effects. While no detailed records were kept, all this seems to be a significant improvement. (I thought the doctor said to expect improvement in about a month, but I'm now wondering if he actually said "within" a month, as this improvement came as something of a surprise to me.) I should note that I did not consciously change my oxygen usage beginning on 01 AUG. I have customarily removed my cannula while comfortably at rest with no SOB, and if my SpO₂ is above 90. It was only in retrospect that I noticed this new pattern.

I go to pulmonary rehabilitation three times a week. My normal drill consists of four different exercises which usually take about 110 min. to complete. Prior to treatment, my custom was to use an oxygen flow rate of 2L/m for very light activity (e.g., normal walking) and 3L/m for exercise. My latest session was on Fri., 07 AUG. I did my customary 30 min. on the treadmill (this is my hardest exercise, so I usually do it first) and then proceeded to the UBE (arm crank) drill. About 10 mins. into that I glanced at my oxygen tank and noticed that I had never turned it up to 3L/m. I was stunned that I had done my treadmill drill at 2L/m and actually felt good all the way through it (I'm usually a bit fatigued and SOB after 30 mins.). This is just one incident, but I think it's a noteworthy one. In addition, I was always exhausted after rehab prior to treatment, and ordinarily took a nap afterward. This past week, I have actually felt good afterward and have had ample energy left over. This is a novel experience for me. In fact, on Wed., 05 AUG, a few hours after therapy, I decided to eat out (that's somewhat uncommon for me) and I didn't even take my oxygen tank inside. For the first time in ages, I felt almost like a normal person. At this point, I am extremely pleased with my treatment and my progress.

- Jim

 

[Jeannine]

Jim

That's WONDERFUL NEWS!!!! THANKS FOR LETTING US KNOW!

I assume you went to Buenos Aires for treatment? You know many will be sending you private messages about where you went and how much it costs.

 

[barbara]

I think Jim went to El Salvador. I hope your good feeling continues Jim. Was the delivery by catheter or IV or injection, or how? Also, if he adds growth factors, it can help out immensely with how you feel right now. I believe you said one of your friends went as well. Is she showing the same improvements? Can you tell us a little more about the treatment? Did you have to wait long after the extraction or did you have the cells put back in right away? You know we all want to hear ALL the details.
Thanks.

 

[Jim]

Thanks!

Thanks, Jeannine and Barbara. ALL the details, huh? I'm not sure I can do that at the moment, but here's the Reader's Digest Condensed Version in hopes of avoiding too many private emails.

Yes, we went to San Salvador (MUCH easier trip than Buenos Aires would have been!) and the treatment cost $18,000 (covered the treatment and associated expenses, very nice accommodations at the Sheraton El Presidente, and driver to and from the airport, and to and from the hospital. We only had to cover transportation to San Salvador, our own meals other than breakfast and miscellaneous expenses.

There were three doctors: Dr. Roberto J. Fernandez Vi?a, Dr. Jorge Saslavsky and Dr. Lisandro Vasquez (all three spoke excellent English). Bone marrow aspiration consisted of three separate draws from the left rear hip (iliac crest). I have to plead ignorance to any processing that was done, but I don't think it took too long (I was a bit woozy and my sense of time was sort of warped). Delivery was via an IV drip that took 2-3 hours (I THINK!). Then we remained in private rooms for a couple of hours for recovery. We were at the hospital from about 6:30 a.m. until about 4:30 p.m. (I THINK!)

As for my companion, once again I will leave it to her to discuss her own details, if she's of a mind to. But in short, I don't think my treatment was radically different from others I've seen described. I will say that I'm extremely impressed with the doctors and the care and attention they gave us. They checked on us several times a day, and made sure that we could get hold of them on a moment's notice if need be. On top of which, they were all very personable and easy to get along with. And I'll go so far as to say this: REGARDLESS of our outcomes from this treatment, we are already planning to return for another treatment. In short, the entire experience was wonderful except for the travel part, which was an absolute drag. Those of you who have flown with POC's know exactly what I mean by that.

That touched all the highlights, anyway, I think. If anyone has any specific questions, I'll do my best to answer. Would I recommend Dr. Fernandez Vi?a to others? In a heartbeat! (FWIW, I got the impression that he was pretty much on an "equal partner" basis with Dr. Saslavsky and that they very often work together as a team; this is reinforced by the observation that they have participated in several published studies and research reports together. Dr. Vasquez is their local clinic contact, and he is the director and owner of the hospital there. He's also involved in the treatment.)

- Jim

 

[barbara]

Jim - Is the second treatment included in the initial price or will you have to pay the same amount that you did for the first treatment?

 

[Jim]

Second treatment

Jim - Is the second treatment included in the initial price or will you have to pay the same amount that you did for the first treatment?

Barbara, according to his international representative, "Dr. Fernandez Vina does not charge any medical fees for him nor his staff for the second implant, he just charges the out of pocket expenses, such as hospital, medicines, materials, hotel and ground transportation. This brings the cost down by about 50%."

That recent article about him ("somewhere around here") said pretty much the same thing.

- Jim

 

[barbara]

Thanks Jim. That is good news. Hope you are having another good day.

 

[Jim]

Just for fun

Just for fun, I designed a shirt (I think they have other items too). They're a tad expensive, but I think I'm going to get one anyway. Does the point come across as well as I hope it does? If so, would anyone else be interested? I think you can get a better price with larger orders. I'm not pushing anything here, mostly just speculating. (See attached image below.)

- Jim

 

[barbara]

Jim - I love the shirt. Did you know that we can print anything you want on the shirts that we sell? You can design anything you want and Goonatics gives the forum a donation for each shirt sold through them.


www.goonaticwear.com

 

[Jim]

My companion breaks her silence!

My companion has always been reluctant to go without oxygen even for short periods of time, and normally uses it 24/7 nonstop. (During our trip, I needed to persuade her to change the levels on her POC to conserve battery life, and even to turn it off whenever possible. We both had our pulse oximeters handy.) She commented a couple of days ago that she hadn't noticed any improvement in her condition. Yesterday at rehab, however, we both agreed that her post-exercise saturation levels had improved remarkably (from lower 90's to upper 90's). I suggested that she try going without oxygen while she's home and at rest, while keeping an eye on her saturation levels. This is what I just received from her by email (she gave me permission to post this):

Oh my goodness, I'm checking my O2 levels, I do a little bit, like straighten the covers on the couch, go in the garage and get Buddy's dog food, and my O2 levels are 96. I actually feel better without my O2. And my levels are up even doing little light things around the house. I rinsed a few dishes and it was 95 and jumped right up to 96, 97. And I'm not just sitting down. I appreciate your telling me how your checking your 02 and doing better, I was just waiting for the month to be up, I'm thinking you're right, he could have said within a month instead of in a month.

I'm one to always wear my oxygen, I just always have.

The first time I went without was when we were conserving when traveling. Which I really thought was a good idea.

- Jim

 

[barbara]

As long as one's saturation levels stay up, there is no need to use supplemental oxygen. Thank your friend for allowing you to post for her. We wish her well and hope that she sees good improvements. It will be interesting for you two to compare. I keep a log book which helps immensely.