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]

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 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]

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 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]

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]

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]

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

[rosech44]

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]

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]

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 - 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, 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]

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? :p

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]

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!

[anney_uk]

Thank you Harv,

I have studied carefully your thoughts and can see why you offer these to me. It is a big decision to make and I can only say that over a fairly long life, I have learned to listen to my instinct. I am therefore, going to wait and see if SCB will open a European clinic in order that I may receive the Cord stem cells. I understand that it is only a few who have had this treatment and that their results vary but I feel this is the way to go for me.
I note that your own experience of Autologus stem cells has shown no improvement on the two occasions you have received them. I would be somewhat disappointed in this result - do you think this should not influence me?

Anney

[anney_uk]

Thanks Barbara,

I do have the tablets and the Powerlung and look for some improvement soon. I have just finished the Pred and have four antibiotics left so hope that some improvement will be seen soon. It is hard going to have two setbacks so close together and the second one so very much worse but I will keep hopeful for a good outcome with the stem cells.

Thanks for your encouragement and support.

Anney

[barbara]

I am having a strange ailment myself. I have been really short of breath for the last week. I haven't had SOB since last May. I have no congestion and other than the shortness of breath thing, I feel fine. My sats continue to be okay. It is totally weird. I am hoping to rid myself of it without having to use prednisone. I think having had the stem cell therapy has changed how my body fights things off, so I am giving it a little time and using natural remedies. I could never have done that before I had stem cell therapy. It would have deteriorated into pneumonia undoubtedly and I would have been in bed for weeks. This is encouraging for me, but at the same time, I didn't need to be reminded how horrible SOB is. I want nothing to do with it again. Once, I am feeling better, I am going to have a serious talk with the stem cell army and they will not be getting any time off again. I hope you can recover and get feeling better. Two in a row is very tough.

Also, I think Harv was trying to encourage you to seek treatment if things get out of hand with your condition. He does not have COPD. Adult stem cells have helped several patients with COPD. Dr. Fernandez was the first to discover that his heart patients were all having increased lung function after stem cell therapy and he then went on to use stem cells successfully on patients suffering from COPD. I honestly would have taken either treatment for COPD, but I ended up going where it was the most convenient. I have no regrets and continue to feel that stem cell therapy is the most viable treatment for people with COPD at this time.

[hlichten]

...I note that your own experience of Autologus stem cells has shown no improvement on the two occasions you have received them. I would be somewhat disappointed in this result - do you think this should not influence me? Anney

I don't think that you should be influenced by my results in any way, shape or form. Everyone is totally different in terms of their medical history, metabolism, general health, age, family medical history, etc. etc. I think I have already pointed this out.

I think you need to re-read what I last posted more carefully. If I said that you should be careful in deciding to go with cord blood based on the experience of 12 or 15 cases here, then would you think that you should base a decision on adult blood based only on my case??

You said that you "have learned to listen to (your) instinct" and there is nothing wrong with that. Stem cell treatment right now is a big gamble, and a roll of the dice.

You can listen to your instinct, or you can try to make the best, most educated decision possible, and try to increase your odds. To do that requires relaxed, logical thinking.

I have no real idea how many forum patients have been treated by SCB. I guessed 12-15, I could be wrong, but the number is not great enough to say whether the treatments are fully successful or not. Again, every patient is different.

As for me, my last treatment was 2 months ago, so I am still quite hopeful for improvement!!
However, even if I don't, can the value of human treatments for you be discounted after viewing the merits of marrow-based treatments for a multitude of ailments over the past decades? I don't think so.

Do you not buy a Honda, because you read one or two bad reviews of Hondas?

I think that waiting for SCB to open a clinic could be like waiting for a department store to open a new location. There could be issues with permits, zoning, etc. or they could simply change their mind and decide not to open it.
I would suggest that you contact them and ask if there is a firm date being suggested for opening the new clinic. If you want a treatment, and are quite sick, I really wouldn't wait, since it could get to where you can't travel even short distances.

Do you have family and/or friends who are with you? If you do, I suggest sitting down with them with a pen and paper and writing out the pros and cons of all available treatment formats and locations. I list the pros and cons of lots of decisions, and it helps me often.

Finally, I hope you fully understand that I am trying to help you, and not to complicate your decision in any way.

[anney_uk]

Harv, it is very kind of you to go to such trouble to help me understand the best way to go and I do consider everything that you say most carefully. , I do discuss my position with my family and weigh up all the options but, as you say, it is not easy to come down on one side or the other. Both may be good, both may not be - the clinic may not ever open in Europe... who knows? I plan to tread water for a while longer and await news from SCB as to their plans.

In the meantime Harv, I do hope you see some improvements from your last treatment.

Barbara, that is a blow to be experiencing sob again and I do hope and pray that this is only temporary and you will soon get back on track.

Anney

[hlichten]

Harv, it is very kind of you to go to such trouble to help me understand the best way to go and I do consider everything that you say most carefully. , I do discuss my position with my family and weigh up all the options but, as you say, it is not easy to come down on one side or the other. Both may be good, both may not be - the clinic may not ever open in Europe... who knows? I plan to tread water for a while longer and await news from SCB as to their plans.

In the meantime Harv, I do hope you see some improvements from your last treatment.

Barbara, that is a blow to be experiencing sob again and I do hope and pray that this is only temporary and you will soon get back on track.

Anney

No problem.
Whatever makes you comfortable is all that matters right now.

[barbara]

Thanks Anney, It is the weirdest bout of SOB I have ever had. I have not one other indication of being ill as used to be the norm. I did have a stiff neck for a couple of days and it went away. The last good bout of SOB I had resulted in terrific breathing and improvements afterward. I hope that is what is happening now. Mr. Toad has reared his ugly head again! I will keep you all posted for sure. My peak flow meter measurements are as high as ever and I have no trouble doing the PowerLung. It used to be when I got SOB, I couldn't do much of anything but lay around on the couch. I am being very careful to only eat very healthy foods and I have increased my NAC to twice a day. I am also drinking lots of lemonade, green tea and fresh squeezed orange juice. I even had the energy to make the lemonade too. Crazy huh?