Update

[Ross]

Hi everyone,

I'm having Fran my wife type for me. I had my procedure done Oct 4 2007 and so far I haven't seen much change, The only thing is that I think I have a little more strength. My SOB is still the same. Dr F tells me that it probably will take longer for me to see any change (3months) he gave me some suggestions that might make a difference which was having to do with inhalers. So I still struggle with the showering as usual, but I'm not giving up I'm doing everything right on taking the Vitamins and doing the diet.

Rose we are sooooooooo happy to hear about improvement. Please take an extra shower for me HA HA. Thanks for keeping me informed on your progress. I think that I am in such bad shape that it's going to take a lot more time to fix me.

PS: Tell Norm to put a hook on his line and he might catch more fish HA HA

Ross

[barbara]

Ross - I am so glad to hear from you. It may take you extra time to show improvement, but keep a good attitude and you will find that little by little some small steps will be gained for you. I will give you a hint and that is that you must continue to shower so that Fran doesn't make you sleep outside. You cannot expect Rose to take on extras just for you. I am glad you are taking the supplements and behaving yourself. We have been waiting anxiously to hear from you. I think about all the Pioneers and I hope others will post soon - changes or not. This is a way to learn for others that may want to get treatment.

[rosech44]

Great to hear from you--- and regardless of what Barb says, if it will help you get better faster---I WILL TAKE EXTRA SHOWERS, JUST FOR YOU!!!!

At any rate keep posting, so we don't worry about you, and Fran, if he gets too smelly, just hose him down!!!!! LOL

Good talking to you tonite---

[Connie Golden]

So good to hear from you both. Rose, your progress is exciting. Ross, although it's going to take you a while to get up to speed, just keep going a little more each day. I suggest Fran sets up your golf bag in the livingroom to remind you why you need to put a little extra effort in your exercising program! You can do it.

I'm still floating in the bathtub. I live alone so I've been a little afraid still to tackle the shower just yet. The steam used to give me problems. I'm just a little scaredy cat for now.

I know I am improving in small ways...like deciding to go to Sams shopping at 7am or doing extra things around the house. My blood pressure has come down to the normal range for the first time in five years. I do seem to have more vitality and people say how good I look. It helps that I have been feeling well!

Ross we're all counting on your good recovery! Hang in there and don't let us down!

All my best to all, Connie

[barbara]

Connie - How good to hear your news. Yes, those are small steps, but the blood pressure coming down has to make you feel better for sure. I think you are very astute to notice things such as having the energy to go shopping at 7am. You are far ahead of me in that category! It is just like I mentioned in that some of the changes may be so subtle or not what you are expecting that you can actually miss them if you aren't careful. You start to do things you used to do and not think anything of it until you remember you weren't able to do that particular thing for the last couple of years or months, depending on the progress of your disease. As for Ross, he is in a world of hurt with all these suggestions. Rose gave Fran permission to hose him off and now you are telling her to put those tempting golf clubs just out of his reach, which hopefully is a little more each day. Ross, you can't win, so think positive and get those stem cells working overtime. Thanks again for the update and please, let's hear from everyone else very soon.

[Bev12452]

Ross take it slow and do what you can like you I haven't noticed much improvement in fact I think I am more sob than before so I don't know what is goin on if Fran wants to you leave you can come down here to Fl and hang around in your sweats maybe we could boost each other up take care and hope you have some improvement

[barbara]

I went through a period of having more SOB than before I went. At that time, I was beginning to seriously doubt the decision I had made. Then suddenly, on May 20, after a horrible week prior, I woke up and my SOB was gone. It has not returned since. I have no explanation for this and have not found any doctor that does. The one thing we can do is give each other support. The waiting is the worst and still is. At least, I no longer have surprises in the morning. By this I mean I consistently feel good and don't have a day here or a day there with problems related to breathing. It is no longer a guessing game as to whether I can make plans in advance. My main goal now is eliminating the need for O2. I still need it upon exertion although my sats are staying higher and higher when I do exert. They used to drop into the 80's with O2 and now they don't. This is a great sign. Now, if my stubborn body would just get it in gear enough so that I can chuck the nose hose altogether, my dreams will have come true. I truly do appreciate hearing from those of you that have had treatment. We can all learn a lot by reading how each person is reacting and in what time frame. Keep those updates coming in!

[Jeannine]

Connie
That is wonderful news. That's how it starts - you feel braver and do small things which start to add up after awhile. Happened to me too.

Yesterday I thought I was coming down with a cold (people in my office have been coughing and sneezing) and I was so SOB a few times (like my old self) that it really let me see how far I have come. Luckily, I took 3 droppers of Echinacea & Goldenseal under my tongue last night and again this morning and I am feeling fine again.

Family members who haven't seen me for a month or two have commented on how much better I am doing. I went to my brother's house for dinner lasy night and even though I felt worse than usual I was still able to climb his stairs without SOB and even carry on a conversation when I got to the top. This is the first time in at least 3 years that I don't get SOB when visiting him. My husband says I am back to where I was 3-4 years ago which is great considering I didn't have any severe SOB until 2004. Prior to that I only got SOB during strenuous yard or house work.

[mrhf1956]

this is my First time on this site , and this sounds very interesting. What i would like to know is a ball park figure on the cost, as i don't think my HMO will cover it. I was diagnosed with copd in march of 1988. I have been on 02 for 5 years. Just for sleeping at first , then three years ago i went to 24/7
Also do they have an age cut off for this stem cell treatment?
Harry Hmrhf1537@yahoo.com

[barbara]

Welcome to our forum! Unfortunately, your HMO is not going to cover this most likely as it is a procedure that cannot be done in the U.S. yet. However, word has it from a good CPA, that the entire procedure is tax deductible including the transportation costs to get to the clinic of your choice and your expenses while there. The costs vary from $12000.00 to $59000.00 for stem cell treatment. Some clinics include 2 nights hotel and transportation to the clinic and from the airport. What a range, you say? Well, if you didn't say that, I will. I have no clue why there would be such a vast amount of cost difference in treatments. There is no age cut off which is nice. This is a very simple procedure. Most clinics require a 2 night stay. Clinics that are currently accepting COPD patients are in Argentina, Germany, Tijuana, Mexico, Costa Rica, Bermuda and the Cayman Islands. There are other stem cell clinics, but to my knowledge these are the only ones treating COPD. I am glad to see you posting and I hope you will continue. We have a nice group of people on this forum and we are all here to try to answer your questions.

[Pat Chronister]

I will be 79 on January 10 and just may be the oldest one in this forum?? Makes no difference. My grandson will be 21 in January of 2009 when I turn 80. I plan to take him to Vegas for GRAND celebration - just him and me. We've been planning it since he was 12. I figured it's time to start working on getting better real soon to make that date. Sure can't do it feeling the way I do now.


Pat Chronister
Had Treatment December 6, 2007

[barbara]

Pat - I think there are a few on here who have you beat. Unfortunately, there isn't much you can do to speed the process along. It is worthwhile to eat properly and exercise as much as you feel up to, especially with the Power Lung, but it is a slow process for sure. That's why we all suffer from Impatient Syndrome from time to time. It also helps to keep stress at a very minimum. I hope your plans come true with your grandson.

[hlichten]

I will be 79 on January 10 and just may be the oldest one in this forum?? Makes no difference. My grandson will be 21 in January of 2009 when I turn 80. I plan to take him to Vegas for GRAND celebration - just him and me. We've been planning it since he was 12. I figured it's time to start working on getting better real soon to make that date. Sure can't do it feeling the way I do now.


Pat Chronister
Had Treatment December 6, 2007

What is the "Vegas GRAND celebration"? I know about the grand celebration that was in 2005 for Las Vegas' 100th year centennial. What is this one for, and when is it?

Like Barbara said, if you had treatment a little over a week ago, you need to not be expecting improvement right away. Unfortunately, I have had two different treatments, spent way more than $80,000 including travel this year, and no improvement yet.

It is now clear that improvement can take a year or longer. Dr. Feinerman (who did not treat me) stated this in a recent "Ask the Doctor" and I have noticed that several Phase II and III clinical trials for stem cell treatment are measuring improvement at the 12 month time period after treatment, so a year looks to be correct.

The Phase II and III trials are the official double-blind testing being done at hospitals and university clinics all over the world, that will hopefully lead to future FDA mandating of stem cell treatment in the USA.

As for immediate, or close to immediate improvement, some people do seem to experience this, some may be perceived or even imagined, there is no way to know, since everyone is different.

As she said, live well, eat well, try to relax (which is very hard to do).

My personal advice is: tell EVERYONE that knows that you went for treatment to NOT ask you regularly if you are feeling any better. Other than a chosen few people (like Barbara) it bothers me when friends and others ask me if I have improved. Just me, you might enjoy being asked by everyone. As I said, everyone is different, and YMMV.

[barbara]

Harv - I think Pat is meaning the Grand Celebration of her 80th birthday with her 21 year old grandson. I am assuming this would be his first trip there. And thank you Harv for letting me get away with asking how you are. I know you will update us, but sometimes I get carried away and get impatient waiting for updates. That darn Impatient Syndrome again! I am greatly encouraged that Dr. Feinerman has been seeing good results later on than was first expected. I am looking forward for more good things yet to come and I wish the same for all of our members who have had treatment.

[Pat Chronister]

Harv, Your comment about the GRAND Vegas celebration made me chuckle. The variety of interpretation of written words is so interesting. The "GRAND" was meant only to call attention to the personal celebration that I have planned for my "Grandson" and me. And when I said I'd better start doing something about feeling better, I meant something extreme - like our stem cell therapy. For 4 yrs I've continued in pulmonary rehab exercise class -2 1/2 hrs. twice a week to just maintain a bit of "normal."
Without that, I think I'd be in a fetal position on the couch. This year I had to give in and turn up oxygen flow to 3 ltr to endure 30 min. on treadmil plus reduce the speed to 1.5 - My primary care doc says I remind him of the energizer bunny - I just keep goin' and goin'
My family is so proud of me that I made the decision to do stem cell therapy and took care of all the arrangements myself. I feel kinda proud too - but must give credit to fate that brought me to this forum.

Pat Chronister
Had stem cell therapy December 6, 2007

[Bev12452]

Pat you sure do have a great attitude I know you will make it to Vegas just on your sure will to be there you already seem to be doing alot better I for one did not feel like getting online for the longest time I need some of your determination maybe I will set a goal for myself you are an inspiration to me maybe you can come to Florida and smack me and get my butt in gear take care and keep in touch

[barbara]

Bev - What you are going through is what we have also experienced. Don't beat yourself up about it, but do keep posting. Some people get down in the dumps, others get invigorated, some get both off and on. There is no way to explain it unless you have had stem cell therapy in my opinion. I was so blue some days, I wanted to find a bus on the road and stand in front of it. Only trouble was, I didn't have the energy to do it! Then as suddenly as the blues showed up, they would disappear and I was almost in a euphoric mood. Very strange to deal with to say the least. You can try to shake a little of the moods by using CD's to relax with and of course good old exercise takes some of the edge off.

[hlichten]

OK, I think I am up to speed on what the "grand" celebration meant and everything else, and yes, it does sound truly grand. ;)

I have been to Vegas about 5 times and love it, which is one reason I wondered if it was a publicized event!

I am in no way a gambler, but I find some amusement in watching people lose money very quickly. If you like shows, I highly recommend Rita Rudner at the New York, New York, the Smothers Brothers (if they are there - they were fabulous), The Platters and The Coasters were awesome. I also saw a Cirque de Soleil show that was amazing. Those are all lower-priced shows, which are all I have ever been to.

I am not into Celine Dion, but she is the highest-price show in Vegas. Caesar's built a theater just for her.

My favorite part of Vegas is the climate: I love walking in 105 degree heat with no humidity! In Texas, I have the heat, but also high humidity, which makes a huge difference. I can walk forever in Vegas, and no allergies in the desert!

Can't see any reason why you won't make it there, as was said...based solely on your attitude alone!

Where are you going to stay?
I stayed once at the Luxor, but many times at the Aladdin which is now called Planet Hollywood.

[hlichten]

...And thank you Harv for letting me get away with asking how you are.

Any time.

Coming from you I know that the intentions and question are genuine.

When some others ask me, it's more like they are tired of hearing that I am not well, and just want to hear something different!

[Pat Chronister]

Harv, We'll probably stay at Mirage. For years, it's been our favorite. Caesar's is great for the shopping mall, but it's casino doesn't have the right attitude toward my money - takes it away and won't give back - every time. I love to gamble and seldom waste time on shows. I think the last show I saw was Sammy Davis, Jr. (what a performance THAT was). I do love to gamble - I consider it entertainment money and budget a certain amount for probable losses. I also take check book and enter a "to heck with the budget" phase about 24 hrs. into a 3 day trip.
Maybe I'll see you in Vegas in January, 2009.

______________________
Pat Chronister
Had treatment December 6, 2007

[barbara]

Pat - I think anyone celebrating number 80 or 30 or 40 or whatever, really needs to go to the Chippendale dancers show. Leave your grandson somewhere, it's not for him! I got married in Las Vegas in June many years ago, no less. Hotter than you know what. My future mother-in-law was on a streak and barely made the wedding. The man that was to give me away was hiding in the bushes from his wife because he was smoking and she thought he quit. He almost missed the wedding. I was getting a pedicure and I almost missed it. We all somehow got there and the wedding proceeded. Such fun memories. I think I heard somewhere that Celine Dion has left Las Vegas if anyone is a fan.

[hlichten]

...I think I heard somewhere that Celine Dion has left Las Vegas if anyone is a fan.


Wow...
You are correct!
Good thing that her songs nauseate me.

[Howard]

The past three months (or has it been years since the last cold one?) since treatment and things seem to be rocking along rather smoothly. Hungry for real food? Yes. Tired of all the pills? Yes. But patience will win out in the end. Last time I mentioned dropping my O? levels gradually and the results are ok, I guess, with my limited knowledge. I remove the hose when I go to bed about 9:00 p.m (our time) and leave it alone until after I shower in the morning. I have it set on 1 L and that is where it stays for most of the day. I run it up to 2 for my walk on the treadmill and for when I get bogged down in some other stressful situation. As Dr. F said in the first Ask the Doctor installment, ? The target is to gradually try to reduce or eliminate these medications (Albuterol, Advair, etc.) after stem cell treatment. The biggest goal is to see the gradual reduction or stopping of supplemental oxygen?. SATs run in the mid 90's...98 when just sitting, 92-94 walking around. I don?t want them to get below 90 (my opinion only). I do try to stay calm and pretty quiet and just let them little fellers do their work without any undue outside influence. Of course, with Congress gone home for awhile I have no idea what this C-span junkie is going to do to keep amused. Might even have to do something constructive.

A couple of days ago my hospice preacher and social worker dropped by and I asked for their opinion on how things have changed over the last three months. Both of them agreed that my skin is showing a more natural look, not ?ashy? like it was. The preacher added that I looked more ?dignified? (How about that, Barb?}, that I sat up straighter and talked with more confidence. Nurse says that she is hearing good movement of air just not enough of it yet. I have all the confidence in the world that this is gonna work.

I wish I had something more positive to report, but considering where I was three months and one day ago, this is a very positive report.

Merry CHRISTMAS to all, y?all!

[rosech44]

You Are Doing Great----to Go All Night Without 02 Is Remarkable, I Am On A BI-pap Machine, So Not Sure If I'll Ever Get Rid Of It At Night, Completely. I Too Am Tired Of All The Pills, And Wanting Real Food---but, Will Continue On, As Ordered. My Goal Is To Get Rid Of The Advair And Spireva--so Expensive, The Saving Would Pay For The Treatment---lol

Keep Improving, And Don't Get Too Bored With Out C-span

[barbara]

Excellent report Howard. I am pleased to hear that you can go all night with no O2 and then wake up and still do some more things before using it. That is downright fantastic. I realize this doesn't mean that you are out shooting hoops or jogging for a few miles, but people who are have been as sick as most of us realize that this is a great milestone. Keep it up. I hope Santa brings you some nice tofu for your stocking. I just had to add that. Sorry.

[Howard]

Hello, y'all,

Since my last report (December 20, 2007) I continue to show improvement albeit barely noticeable now. About the only way I can measure any change is by checking my SATs more often and I am finding that they are more ?level?...94-98. With the O2 almost entirely on 1 Lpm, even on the treadmill, I don?t get below 96. I still walk 10 minutes, break 3 minutes, walk 10 etc for a total of 30 minutes walking time 5 or 6 days a week. Which brings me to something that someone may have some ideas about. At about the 7 minute mark or so, my nose begins to run. I can hold out to the 10 minute mark and then I have to stop. I have been taking Claritin in the morning, Singular in the evening, and a nasal inhaler (all prescribed) for several years. I started to also take Mucinex in early December on the advice of my pulmo but nothing seems to work. We have removed all the carpet, and other dust catchers around the house plus run two BIG HEPA filters to try to keep the air ?pure?. Indoor humidity hovers around 30%. Any suggestions? (Besides making fans out of tofu and when they fill up with dust bunnies, fry ?em in pork fat, and send ?em to Emeril) When I am just sitting, doing nothing (I do that good), I lay the O2 aside and may take a short walk or two just to see what happens...sometimes good, sometimes not...but we are working on Dr. F?s goals.

The doc at the VA was pleased with what appears to be a lowering of blood pressure although it was in the ?safe? range pre-treatment. It is now at or about the ideal. Otherwise, I am patiently waiting for all those little cells to do their work and look forward to my sixth month anniversary. I feel good, I am happy and I will never regret the decision to get the treatment.

My next PFT will be the 12th of February and I will report again after that.

[barbara]

Howard - Your nose story is like my mom's. Out of the blue, her nose started running usually after a meal. We talked to her doctor who wanted to put her on Flonase. I said absolutely not and we didn't. I have since made sure she takes her multi vitamin daily and her runny nose problem seems to have vanished. It is the strangest thing, but I also learned from someone else that nose sprays made the problem worse and that was one reason I said no for my mom. That and the fact I had been on Flonase and had lots of side effects. Go figure that nose sprays can aggravate the condition you are trying to alleviate. I would say just experiment a little and not take the Claritan and Singulair and the nose spray on an alternating basis if you really want to try an elimination test. I look forward to hearing about your test results. Thanks for your post.

[Lee]

Howard - I have the same nose problem and have for a long time. I go to the pulmonary rehab and on the bike I may make it to 15 min, but on the treadmill I usually have to stop and blow my nose at least once in 20 min. It is rather embarrassing. Also if I am doing any work around the house my nose runs. My doctor told me the only thing that can be done is to remove some of the tissue in the nose and you don't want that. I thought I was alone with this problem. It's hard to work with a handkerchief in one hand half the time.
Let us know if you find an answer.

[barbara]

Lee - Do you use any nose sprays? My mom used to get so embarrassed. It was really awful for her, so I can sympathize with you guys. Like I said, hers has gone away completely and she was plagued by it for quite some time. Very strange for sure as she doesn't use O2 or anything and for sure she doesn't exercise. She avoids it like the plague! Maybe, someone else will have an idea.

Howard - You are doing great on your treadmill it sounds like. What mph do you use? To only have to use 1lpm is very good I think.

[Howard]

Amen, Lee, trying to work with a handkerchief in one hand. Barbara, I have tried all of your suggestions if there is a mulltivitamin in the multitude of pills I am taking it. I'll have to ask the boss, nurse, cook, laundress, housekeeper, pill-pusher Susan if I am or not. All the things that I have been taking have been prescribed by various Docs to be the cure for the runny nose. I have cut back, quit them, alternated them, shot 'em with a sling shot and nothing works. The VA Doc is supposed to be sending me something to replace the Claritin. We will see how this works when it gets here in the mail.

Treadmill. Since I am not training to be a marathoner, I am doing the same regimen that I did 4 months ago when I had the O2 set on three and one half to four Lpm...1.6 mph and cover .8 of a mile. Like I said I think I could do a little bit better except for my problem. Only the nose knows. Pun intended.

[barbara]

I think your treadmill progress is outstanding. Now, if you can only get the nose to quit running at the same speed. I will tell you that my mom's just vanished after I took her off the meds and gave her the multi vitamin. Maybe, it is just something that will go away one day for you too. It is almost like your nose is sweating as you work out. Very, very odd.

[Susan]

Which multi-vitamin did you suggest for your Mother that cleared up her nasal problem?

Also, a question for the next Ask the Doctor segment - We have been hearing about Glutathione treatment. Is it something that would be safe to try for COPD?

[Jeannine]

Hi Susan

I can't answer the multivitamin question but I can answer your glutiathione question. I bought pure lquid glutiathione last year and tried it for a few weeks. I didn't notice a difference other than it made me dizzy. The only things that have made a difference to me were the Genf20 and a new product that we are still testing that we will probably announce here soon.

We are still testing it so I don't want to jump the gun yet.

[Lee]

Barbara - The only nose spray I use is saline now and then, but if someone knows of something that works I'll give it a try. I am thinking about trying the mucinex nose spray. That will probably make it worse.
I was glad to see your update Howard. Hope you find an answer to our nose problem.

[barbara]

I just give my mom a senior multi vitamin. I also took her off of all of her meds and it went away. I have no clue if she was deficient in something or what, but it worked. She is now dripless. She never used a nose spray, but sometimes I think they can aggravate the condition. Lee and Howard - Is yours seasonal at all or just all the time when you exercise?

[hlichten]

Sorry, just kidding, but I could not stay out of this totally.

I don't suffer from any acute respiratory issues, although I do use steroid nasal sprays and steroid inhalers for allergies.

One of the biggest issues with most nasal sprays is the "rebound" issue:
The spray helps the breathing, but then you get worse than before after it starts to wear off. Just as an example, the couple of times I have used sprays like Afrin, I felt like I was getting hooked on a narcotic! You can't use it a few times and then stop, because your breathing is then worse.

I don't know how relevant this is to the current discussion, but I hope your issues improve!

[barbara]

Harv - You bring up a good point. People actually do get addicted. I remember reading about this on a forum and on a website. I personally think saline is the best way to go for a dry nose and for allergies stick with capsules you swallow. I had so many problems with Flonase including being totally hoarse all the time. I supposedly don't have any allergies when my latest pulmo checked me out, so why was another doctor thinking I needed a nasal spray for allergies? I'm afraid some doctors are just drug happy.

[hlichten]

...I'm afraid some doctors are just drug happy.


And drugs are all that most doctors have to offer. The best doctors know when NOT to offer drugs, IMHO.

Case in point:
Have you ever been to a doctor with a probable virus, only to have them write an Rx for an antibiotic to "cover" for a "secondary bacterial infection"???

This happens primarily because people who go to the doctor with an illness, and leave the doctor's office without a prescription in hand feel like they have gone to the doctor for no reason.

[barbara]

I do believe that what Harv says is the reason that many bacteria are now becoming so resistant to antibiotics. It is a real problem for sure. I think it is time for a new revolution in medicine.

[hlichten]

I do believe that what Harv says is the reason that many bacteria are now becoming so resistant to antibiotics. It is a real problem for sure. I think it is time for a new revolution in medicine.

Yes, exactly.
Also, unnecessary antibiotic treatments deplete your intestinal flora (the good bacteria in your bowels), lead to yeast and fungal infections, etc.

[Lee]

You got me to thinking about the meds and my nose problem. I can't remember when the problem started, but I think it may have gotten worse around the time I started taking Spiriva. Checked the side effects and sure enough one of the possible side effects is runny nose. Been thinking of quitting Spiriva anyway as I don't think it is doing anything for me. Will give it a try.

[barbara]

Sometimes another medication that is made to do the same thing, but has slightly different ingredients could help. You might try switching to Atrovent instead of Spiriva. It is a little more a nuisance as you need to use the inhaler about 4 times a day, but it would be something to try possibly. The side effects that come with some of the medicines we are given are real and yet sometimes that medication is necessary. I use the Spiriva first by the way. I read that on a COPD forum and it does seem to make the medication work better. I was using it after Advair which is not the correct order. No medical doctor ever mentioned this to me. It was, like I said, someone posting on a forum. Sad, but true. My long term goal after stem cell therapy is to be drug free.