Good News

[rosech44]

Went Today For Post Pulmo Rehab Review----they Put Me Thru Exercises, I Had 100% Improvement From Pre Class Review--
Resperatory Therapist, Said My Lungs Are Clear, And There Is More Air Running Around In There--- She Agrees With Me, That The Stem Cells Had A Great Deal To Do With My Improvement--yes, The Rehab Helped A Lot, But Without The Cells, I Wouldn't Have Such Great Improvement.

 

[barbara]

Wow

Congratulations Rose. I love to hear things like this. You have made my day.

 

[hlichten]

Terrific!
Congratulations.

 

[Pat Chronister]

Good job Rose. Looking forward to lots of these reports from you.


Pat Chronister
Had treatment December 6, 2007

 

[rosech44]

Thanks

Thanks everyone for the replys, I am really happy, was actually feeling kind of down, but after this AM, I am a happy camper----

I wish everyone had access, to both the great rehab class I went thru, and the head of respiratory gal that Runs it---She firmly beleives in what we are doing, and backs me 100%

 

[Bev12452]

great news

So glad to hear you are feeling better went to see my pcp he was really interested in what I had done and even said he didn't care what it was as long as it makes you feel better I was very happy after visiting him so I guess we both had good days I hope you weepies is gone or at least rent a chick flick and have a good cry makes you feel so much better

 

[barbara]

I want to hear from the men

I would like to know if any of the men who have had treatment are having these emotional ups and downs. I know I had plenty of them and then about a month of hot flashes. Men - Are you willing to admit to any odd side effects? I promise not to give anyone a hard time who will report on the forum about this subject.

 

[hlichten]

I would like to know if any of the men who have had treatment are having these emotional ups and downs. I know I had plenty of them and then about a month of hot flashes. Men - Are you willing to admit to any odd side effects? I promise not to give anyone a hard time who will report on the forum about this subject.

I had just the one that you know about for about two days right after I got back from Germany, but it was more likely related to travel fatigue. I felt like I had taken nasty pills, and was biting everyone's head off. Nothing since, just my normal self.

 

[rosech44]

Down Day

After Tuesday, I Was On Cloud Nine---then Yesterday, Everytime I Moved, My 02 Went Way Down--sitting Was At 98, But If I Moved, Down It Went--and I Felt Terrible--lincare Came And Checked Concentrator, It Is Ok, But, I Did Have My Swivel Connector On Backwards, Didn't Know It Had Different Sized Openings At Each End.---hopefully I Will Be Up And Running Again Later--could Be Too That I Was Just Overtired From My Review, Because They Really Put Me Thru The Works Physically, I Was Exhausted When They Finished With Me---

 

[barbara]

Rose -

Could be too that you forgot about Mr. Toad's Wild Ride. Tomorrow will be better. You are a great Pioneer, don't forget it.

 

[rosech44]

Mr Toads Wild Ride

You Could Be Right--today I Am Much Better, Shopped, Even Climbed The Stairs For Chistmas Stuff----

 

[rosech44]

Upswing

The Last 2 Days, I Have Felt Great!!!--yesterday, I Scrubbed My Bathtub For The First Time In A Long Time----hubby's Been Cleaning It, But Not Like I Do----today, I Went To The Kitchen Climbed On A Stool And Attacked My Kitchen Cupboards, Cleaned Out A Lot Of Stuff Needed Throwing--sure Felt Good To Get Something Accomplished. Both Days My 02 Stayed In The Mid To High 90's, I Got Tired, But Recovered Very Fast, No Sob---hope It Lasts---

 

[barbara]

How are you today, Rose?

Just curious Rose - Did Mr. Toad get you today or are you still feeling good? You will come to a point where Mr. Toad leaves you alone and I hope for your sake he has. The early pattern of feeling better brings on a surge of energy when a person thinks they can go back to doing everything they used to do. This boils down to overdoing it. I have certainly done this and I think everyone else can say the same. What is nice is that as time goes on, post treatment, you will find that you are not totally zapped the next day after cramming in too much the day prior. That's why I am asking how you feel today. Don't post too much about how well you are able to clean again. I don't want my husband thinking that that is something I have regained. As far as he knows, it is off limits for me for a long, long time. I suffer continually from NOVAC and I might as well admit unless it has to do with cleaning up after one of my pets, I suffer from all other kinds of cleaning anxiety. Horrible, nasty affliction, but what can I do? I will try to be brave and carry on.

 

[rosech44]

today is good

I'm Feeling Good Today Too---been Up And Down The Basement Stairs To Do Laundry----i Don't Vacuum And Don't Plan On It, So Your Safe There----

 

[anney_uk]

Rose's progress

Rose - I am so happy to read of the good improvements you have made in such a short time. May this continue and I sincerely hope too, that I may be able to receive the stem cell therapy.

I m awaiting news of a European clinic as I am not well enough to travel and have just had another very serious exacerbation which has floored me - the worst yet. Still, your postings are essential, they give me hope and this is so important.

Anney

 

[rosech44]

Thank You Anney

Thank you Anney, For Your Kind Words---I Shall Keep You In My Prayers That You Will Be Able To Get The Stem Cells. I Still Have My Down Days, Too--but I Am Glad I Got The Stem Cells. I Wish Everyone Could Do It.

Don't Give Up, Your Day Is Coming----

 

[barbara]

Anney - I think that you mentioned that you were going to contact the clinic in Germany. I was wondering too, just like Harv, if you ever did. I am very sorry to hear about your latest setback. This time of year just seems to hit us lung patients hard. Please get better. 2008 will be a good year for you. I really feel that way.

 

[anney_uk]

European clinic

Thanks Harv, Barbara and Rose,

I have considered the German clinic very seriously and have come to the conclusion that the Adult stem cells they offer are not my first choice, I would prefer to have the Cord stem cells offered by SCB. I know that Nassim had a very good experience with Adult stem cells but recall that he felt he might have a need of booster cord stem cells. Well, I only have one pot of money to throw at this disease and it could be that if I spent it all on Adult cells then soon after, SCB could open their European clinic and I would not be able to afford any treatment from them, booster or otherwise.

It is a dilemma when I do feel so very weak and breathless but feel I can hang on for SCB - the pioneers' experiences are so very inspiring.

I appreciate having everyone's point of view.

Anney

 

[hlichten]

OK, excuse me while I think aloud:

I will respect any methodology that anyone here uses to make a decision, and we do not all use the same criteria to get to that point, but...
If you favor cord blood over adult (autologous) cells because you think that you will have a larger likelihood of needing a booster with adult cells, I think that logic may be flawed.

Why?

Several of the people here that got cord cells saw improvement.Of those that saw improvement, some did not see all of the improvement that they perhaps expected or desired. Several of those people will be candidates for boosters at the 1+ year mark from treatment, if they can afford it, and can travel. I personally consider it to be a second treatment rather than calling it a booster.

Now:
This advice is coming to you free of charge from someone who:
a.) is not a lung patient
b.) never had a cord-based treatment
3.) has had 2 different adult treatments that have yet to help

Yet I am ALSO a Pioneer!

I am not saying any of this because I have had adult cell treatments, and I am not saying that adult cell treatments will work better. I did far more research than the average patient before my first and second treatments, and still may or may not have made good decisions. Don't know yet.

So...how is that for free advice?

I don't think that using any particular type of cell precludes the need for a follow up treatment. We could ask a doctor that offers both methods of treatment perhaps? Some people will need them. I think that younger, generally healthier people are less likely to need a follow up, just makes sense. How many lung patients here have been treated with cord blood by SCB or other clinics? 12? 15? It is still a very, very small sample of patients.

If you can afford just one treatment, you are way ahead of the majority, and you should pick what you think has the best chance of working. You can't argue with that!

I think I have had enough caffeine for the day, and am sure that my cardiologist would agree!

I do wish you the very best with any decision that you make.

 

[barbara]

We need a crystall ball

Harv - You make some good points that I can't argue with. Anney if you feel okay waiting, by all means do so, but to me the jury is still out on what stem cells are going to prove to be the best for COPD which you suffer from. I surely wish we could all see down the road 10 years from now and base our decisions on that. It is hard on the body to experience continuous exacerbations so for your sake I hope that treatment will not be too many months away. Rebound quickly Anney and get back to a good diet and of course your PowerLung. You know how I like to nag about that!