Update

[Ross]

Hi everyone,

Sorry I'm so late in my update. I have been on Mr Toad's wild ride for a Long time. I have had plus's and minus's for almost three months, first the plus is that I am growing hair on my bald spot on my head and that's the truth! I have also noticed an increase in my blood OX from the low 90's to the high 90's, that is still using my O2 on 4ltrs. When I try dropping my 02 to 3 ltrs my 02 still goes down to the 80's within about 20 minutes. I also feel much better and stronger and not that wiped out feeling.

About the only minus I can report is I am still SOB I still have to turn up my 02 level to 8 or 10 Ltrs when walking in the house. I still having trouble with the shower MONSTER! Help Bev!!!

I would like to thank Barbara and Jeanine for writing their book, because everytime I have trouble I go to your book for information and feel much better when I see that you had the same problems.

I what to thank Rose and Norm for their inspiration and words of incouragement, also I still have trouble staying awake for all of the CD HA HA.

I'm still taking all the supplements and sticking to the special diet. Also I am taking the HGH pills.

Pardon my spelling! as I need a spell check real bad. I hope everyone is doing real well and is getting better everyday.

Ross

[barbara]

Ross - I am so glad to hear from you. Mr. Toad really is inconsiderate, isn't he? One thing you didn't mention is the PowerLung. I do hope you have gotten yours fixed and are back on the program with it because I think it will help reduce your SOB. Keep at it. The first step is to increase your energy and stamina so that you will feel like doing more. I will slap Mr. Toad around a little for you if that will help. Thank you for your very kind words about our book. We truly appreciate it.
Also, make sure you take the GenF20 product about one hour before lunch and one hour before dinner. The maximum effects are produced on an empty stomach.

[laraephenix]

Hi.....This is my first time talking to anyone one the forum. Reading your e mail was the first time I had seen of anyone referring to how hard it is to shower. Drives me crazy, but can t get to excited, because of SOB! I want to have the treatment but have to get my courage up. Thanks to everyone who has had courage to go ahead and get better. LaRae

[barbara]

LaRae - I am glad to see you post. What is it about showering that is so hard for people with lung problems? It is one of the most difficult things there is to do even if you go in with your nose hose. It is one of my unfondest (is that a word?) memories. I am now able to get up and shower without O2 and take my time about it. I can even take a steam bath if I want to. We have a built in steamer. There is no way this was possible pre stem cell therapy. I then get out of the shower and can dry off, get dressed and get my make up on before I put my O2 on to go downstairs and start feeding the hungry mob at my house. In fact, I now feel better if I take a longer shower than a quick one. It used to be, I was so out of breath even with my O2 on in the shower that I could barely make it through a couple of minutes without feeling like I had to sit down some place. I am glad this was brought up again. It makes me realize how bad I was and how much I have improved. I wish that improvement on you too LaRae and all the others. Stem cell treatment may not be perfect and I am not able to run marathons, but it sure beats whatever else is in second place.

[Pat Chronister]

LaRae, Singin' in the shower. What a luxury that will be. I was scared too but decided to at least fill out the application and actually put it in the mail. The phone consultation with Dr. F. came soon after. I'm not the first to say it, but I thought what the heck "what do I have to lose except money!" Once I decided on a date it seemed time whized and there I was on my way to San Diego. Now,it seems like a dream. I DID IT! Showering is still a problem - too early to experience improvements yet.

Pat Chronister
_Had stem cell treatment Dec. 6, 2007__________________________

[hlichten]

LaRae, Singin' in the shower. What a luxury that will be. I was scared too but decided to at least fill out the application and actually put it in the mail. The phone consultation with Dr. F. came soon after. I'm not the first to say it, but I thought what the heck "what do I have to lose except money!" Once I decided on a date it seemed time whized and there I was on my way to San Diego. Now,it seems like a dream. I DID IT! Showering is still a problem - too early to experience improvements yet.

Pat Chronister
_Had stem cell treatment Dec. 6, 2007__________________________

Correct.
Now it is time for you to simply try to relax, and to ask others around you to help you relax.
Now...
When you figure out how to make them do it, please let me know how you accomplished it!! ;)

[rosech44]

Ross, I'm Happy To See You Posting, That Means You Have Improved Enough To Get On The Computer--the Shower Will Come Soon---in The Mean Time I Will Take An Extra One Just For You!!! Lol The Object Of The Cd Is To Teach You To Relax, So I Guess The Dr. Is Doing The Trick, You Relax So Much You Fall Asleep!!!

Larae---before Stem Cells, I Could Not Take A Shower Without Gasping For Breath, During And After, Now, I Am Able To Enjoy My Showers, Still On 3lpm 02, But Not Gasping---

Pat, Your Good Shower Is On It's Way, As Is Many Other Good Things----lately I Have Been Kind Of On The Down Side, Nothing Serious Just Not As Good As I Want To Be---I Am Happy I Went For Treatment, And Happy To Have Met All These Wonderful People.

May 2008 Bring Better Breathing To All Of Us----

[barbara]

I think Rose has pointed out something very important. She is feeling on the downside. This is such a common occurrence after stem cell therapy that stem cell doctors, in my opinion, are very remiss in not informing patients of this. It just happens. We become impatient, we start to question if we are at all better. Did we throw our money out the window? Will we never be well? It all plays on the mind and it requires a lot of self discipline to continue with the post stem cell protocols, given to you or not. This means eating well, trying to get some exercise and relaxing via meditation, relaxation tapes and cd's, posting on the forum for support, etc. The stem cell doctors and clinics have not really gotten beyond the treatment they give a person. They don't realize that many people go home with fears and doubts and more questions. They are pioneering also and maybe some day there will be more understanding of the emotional side of this therapy. A lot of it has to do with not knowing how far the treatment will take you in your quest to get well and also being impatient to feel good again. Jeannine and I wrote our book to try to help people understand that this is not a magical overnight cure-all. The forum was started for this reason also. Please, if you feel blue, post away. It will help. I am having a down week myself and it helps to know that I have friends on this forum that will cheer me up. This goes for you too, Rose. You are a very special lady who is always ready to help others. You have a natural cheer about you. Thanks for that Rose. 2008 will be a good one. I just feel it.

[rosech44]

Barbara--thanks For The Very Kind Words---i Am Nothing Special, But I Do Care About Everyone, And I So Want Everyone To Be Able To Breathe Better, And Feel Better---

For 2008 I Wish You All Better Breathing, And Really Great Showers!!!!!!

[Bev12452]

Dear Ross I am so sorry it has taken me so long to get back to you but I have been sick I know you will make it into the shower soon. I had a set back as far as the shower, I had to sit in the shower first time in a long time but like I said I have been sick but I do believe they are working because I bounced back so much faster this time. each of us are going at a pace that our bodies are comfortable with so take care and give yourself a break it will happen for you .unlike Rose I don't have all the energy for cleaning like she does but I don't mind that part you do alot more walking than I do so you are conditioning your body for the event. It still feels real strange to not be sob and enjoy the water not rubbing it in I hope your day comes soon

[hlichten]

---i Am Nothing Special,

I think that you are!! :)

[rosech44]

Thanks Harv----you Are Pretty Special Yourself---

[Jeannine]

HI Bev

I think the major reduction in shortness of breath is very important to our improvements with stem cells. It is the shortness of breath that prevents us from being active which then causes our energy levels and strength to deteriorate.

I just got over a bad cold that would have put me in bed for a week and one prednisone and antibiotics begore stem cells, but I was able to get through it and continue my normal routine so to me that alone is worth the coast of receiving stem cells.

[Bev12452]

Jeannine I have to agree about the cells normally I would be in bed for at least a week with the antibiotics and roids but this time three days and back up and functioning I do beleive they are working my new question is when does this ride stop I am ready to get off hope everyone is having a great day I am enjoying the sunshine from the sunshine state did anyone ever find out why no direct sunlight I go to see Dr R on the 16 I will have to ask

[barbara]

I believe the ultra violet rays could have some effect on the treatment you had. If you have ever taken certain antibiotics, some say avoid direct sunlight. Since, we do not know what exactly was in your stem cell cocktail, I would assume that the doctor is giving you that advice for a good reason. I don't think it is a permanent situation. Ask the other doctor when you go for your next appointment. As for the ride, I wish I had a crystal ball. It will even out, but I am still on it from time to time. In the meantime, think how you might be without stem cell therapy. The ride is just a little blip along the way to a better life. I would like to have you send me some warm weather (overnight express mail). I am freezing here. I keep wishing for the hot flashes to return.

[laraephenix]

:oI have t been logged on since Dec. but am still so encouraged to hear from all who are going thru what I am and who have already had treatment. I go to pulmanary rehab twice a week and TRY to exercise other days of the week and have found myself being more faithful in doing that when I think about trying to get myself in shape-----any kind of shape:):):). My car and my computer both bit the dust in Dec, now I have a new one of both so hopefully will be more engaged in outside world. I wonder if anyone knows how many people have had the stem cell treatment so far? In the book on the last page there are 17 people listed. Are there many more now? I also told my doc about this treatment and although she was fairly sceptical she was not discouraging. Which was nice! Will relish hearing from one and all. Thanks ...... LaRae

[barbara]

Good to hear from you! I have no idea how many people have had stem cell therapy for COPD or for any other disease. There are clinics all over the world and each one would have numbers, but whether or not they would want to give them out is another thing. The book that Jeannine and I wrote is about the group we formed searching for treatment. We called ourselves the Pioneers. Since the forum began we have had many people join us in our quest for a cure. The book is soon to be in its second edition as more of the original Pioneers have had treatment.

[Howard]

Wow! What a ride! Friday i woke up to a whole new world. I had a terrible time doing anything. After having my O2 set on 1 Lpm for nearly 2 months, I had to crank it back up to 2 just to sit around, had to use it to shower, and Saturday afternoon had a spell just like when I was leaving the clinic in Mexico when I was so SOB that the doctor had to come out of the clinic and give me a shot of Prednisone to get me breathing again. No prednisone this time, but am still SOB and operating on one and one half Lpm. I have no clue why I was doing so good and being so happy and then the bottom fell out. It was still difficult on the treadmill this morning and the weights this afternoon but much, much better than Saturday. i am still working with a positive attitude and if things change I will let you know.

Thanks for being there.

[barbara]

Howard - This sounds exactly what happened to me before Christmas. I had not had any SOB since May 20, 2007 and I woke up one morning and WHAM, I had SOB big time like I used to. It went on for a couple of weeks and now it has slowly, but surely gone away. Other than the SOB, I felt great. No sniffles, no extra mucous, nothing. It was totally strange to me and I didn't like it one bit. However, I have to remember that last year I was flat on the couch with some respiratory ailment that I thought was going to kill me. I got through whatever this was with no steroids, just took extra vitamin C and some echinacea/goldenseal and of course my usual supplement store of other stuff. I also have been eating one carton of blueberries a day. That noni juice that Bev is drinking is good and Harv posted earlier about several juices he takes. There really is something to them I think. I hope yours doesn't linger like mine did, but it sounds so similar. This miserable weather we have been having doesn't help either. I may as well move to some outpost in Wyoming. The wind is howling tonight and the snow is blowing. Really nasty. Keep me posted on how you are doing. I am sending you my super duper Get Well Wishes.

[Jeannine]

Barb

You made me laugh with your outpost in Wyoming comment. Here it's been raining so hard that I feel like Spongebob

[barbara]

Well, don't think your spongebob comment wasn't just as funny. I can picture you now.

[Howard]

You two, Barb and Jeannine, will be happy to hear that the Robins arrived a couple of days ago on their way back north and the jonquils are blooming.

[Jeannine]

Howard

I hope the robins hurry it up so the weather will change. Our jonquils won't appear until May.

My in-laws (who live in MS) attended a Camellia show last weekend where they are judges. If I tried to grow anything outdoors before Memorial Day it would be frostbitten. GRRR!

I remember one year we went down to visit them two weeks before Christmas and my mother-in-law had just cut some Camellias and placed them in a vase for me.

Some day I will escape this horrible weather. So far today it's rained, sleeted and now it's snowing.

[Howard]

Not much change from last month except for the setback previously reported. Still on 1 Lpm for most all activities but go up to two and sometimes even three on real stressful situations. Try to stay close to the house and away from the flu bug that is very prevalent in our area. So far, so good. Get PFT on 12 March. Wish me luck on some good numbers.

Thanks

[barbara]

I want to wish you good luck now and for that test! Remember to stay calm for the test and not to catch something a day before you have to get the test. I have had that happen more times than I care to remember. Maybe, it is mental. I would get too stressed thinking of the test (which is only a test by the way and not necessarily indicative of how a person normally feels) and invariably catch some crud before I went. Tell the doctor the next time you take the test you would prefer something simpler like multiple choice. Seriously, Howard, I do hope you get over the bug you've had soon. You will bounce back better than ever.