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Thread: By way of introduction

  1. #1
    Join Date
    Aug 2007
    Location
    Palm Beach County, Florida
    Posts
    28

    Wink By way of introduction

    Hello Everyone!

    My name is Anastasia (Stasia or short...long A) and I'm Nelson's other half. Nelson received his Stem Cell cocktail on June 5th, 2007. He was given cells for COPD, Type 2 Diabetes and Congestive Heart Failure (brought on by the COPD). To date each of his conditions has shown improvement!

    I suggested this thread to Barbara for several reasons, not the least being the simple fact that caregivers need support too! We have questions and concerns to share with each other and the general forum. I hope all of you will contribute your own experiences,caregivers/receivers alike! Each and every bit of information contributes to the weaving of whole healthy cloth.

    Has anyone visited the web site Stem Cells Save"? They have some great bumper stickers!

    Hope to hear from all of you soon,


    Anastasia

  2. #2
    Join Date
    Jun 2007
    Location
    Vineland Station, Ontario, Canada
    Posts
    36

    Thumbs up Another introduction

    Hi everyone,

    Anastasia, I'm so glad you suggested this section and you're absolutely right, us caregivers sure do need support. Have you ever been able to find a support group for caregivers of COPD? I've seen them for every other kind of disease known to man, but never for COPD. In fact, up here, support groups for COPD are few and far between for anyone.

    I'm the caregiver to Doug, who I'm trying to figure out how to get the funds to get him treated. I know this is the only hope he has and with how he is right now, he'd never withstand a transplant and after hearing how well this therapy works, know I'd NEVER want to subject him to a transplant. I'd like to have him around a lot longer and feel this therapy will do that.

    I hope other caregivers join us here, we definitely need the support of each other through times like this.

    Hugs,

    Mary

  3. #3
    Join Date
    May 2007
    Posts
    12,901
    Blog Entries
    5

    Default Caregiver Support Group

    Welcome ladies to the first Caregiver's support group for COPD. Of course, all caregivers are welcome. I think this is a great idea too and I hope you and other caregivers will find it useful. I know I used to get upset (and still do at times) thinking that my family didn't really understand all I was going through. I also realize that the other side of the coin is that I had a hard time realizing how they were feeling. Everyone loves Christmas in my family and yet to me it was one of the most difficult times of the year. Shopping had become so hard for me that I absolutely dreaded it. I bought from catalogs one year and that helped a little, but there was still the wrapping, etc. These are things that I think we should try to discuss with our caregivers and realize that it isn't our fault that we can't do some of the stuff we used to. Just trying to keep up left me exhausted. My family probably understood all of this far more than I gave them credit for. I just didn't want to disappoint anyone. I am glad to say that things have changed. I think I am getting in the holiday mood very early this year for the first time in a very long time.
    First treatment in 2007. Pioneering ever since.

    Barbara

  4. #4
    Join Date
    Aug 2007
    Location
    Palm Beach County, Florida
    Posts
    28

    Question It's Christmas Already????

    Barb you're too funny. Hey Mary!

    When Nelson and I went on the Sea Puffers cruise they had a meeting just for the caregivers...it was a relief to know I wasn't the only one being driven nuts. I'd ask Nelson if he slept well and he'd answer yes...then a half hour later he was nodding off in his chair! It's almost impossible to get a straight answer from him sometimes...he thinks by not telling me I won't worry as much. I find I'm always torn between doing something for him or making him do it himself...99.9% of the time I do it for him and then beat up on myself for not making him do more.

    Barb...you need another forum...THE BOOK...it's marvelous. It arrived yesterday and I read it through! We need to start reminding doctors that they make a very good living from our illness and it's time to start giving the service they are paid to provide.

    Hugs to all


    Anastasia

  5. #5
    Join Date
    May 2007
    Posts
    12,901
    Blog Entries
    5

    Default You're too funny too!

    I just had to comment about that falling asleep thing. My husband can nod off in the middle of anything and he is fit as a fiddle. I know Nelson has (I can hardly wait to use had) some serious health problems, but I just had to laugh when what you described fit my husband also.
    First treatment in 2007. Pioneering ever since.

    Barbara

  6. #6
    Join Date
    Jun 2007
    Location
    Vineland Station, Ontario, Canada
    Posts
    36

    Thumbs up Me too!! Me too!!

    Hey you two, are you talking about somebody I know? As I read both your posts, I was waving my hand furiously to try and get your attention to let you know that I needed to be included in the discussion....LOL

    Anastasia, isn't it infuriating to have our guys tell us they slept great and there they are catching some zzz's not two minutes afterward....LOL Sounds like we've got a lot of similarities between our two guys.... Personally I think they enjoy being waited on hand and foot and could get really comfy with that type of treatment....

    But as Barb said, maybe it's just a guy thing. Barb, it's great to see you on here again in such a good mood. I'm so glad things are looking up for you.

    Hugs,

    Mary

  7. #7
    Join Date
    Aug 2007
    Location
    Palm Beach County, Florida
    Posts
    28

    Default Sleep etc.

    Nelson says he's never seen anyone like me...as soon as my head hits the pillow I'm asleep...but I don't nod off in the middle of the day. He only does that when he has had a bad night.

    Mary, I just read your post where you said Doug does not qualify for oxygen and I'm aghast. Is there any way to appeal that decision?


    Anastasia

  8. #8
    Join Date
    May 2007
    Posts
    12,901
    Blog Entries
    5

    Default Christmas time again

    It is Christmas everyday after you get stem cell treatment. Each day brings a new little gift. Ed told me that and it is certainly true.
    First treatment in 2007. Pioneering ever since.

    Barbara

  9. #9
    Join Date
    Aug 2007
    Location
    Nevada City, CA in foothills of Sierria's NE of Sacramento
    Posts
    33

    Default By Way of Introduction

    Hi: My name is Regine. My husband has had COPD for about 6 years. He is 75 years old and in good health otherwise although the COPD is starting to cause other problems. We went on a cruise in June and he was able to go without oxygen for some of the time but when we got back he just started having problem after problem. Then he fell and fractured a couple of ribs which effected his breathing which effected his heart a bit etc. etc. etc. You probably know the story. We've been together a long time. Sometimes I feel so discouraged. Other times I get angry and that's hard on him and then I feel guilty. I know people die and I'm trying to get used to the idea. We've talked about the stem cell therapy. He seems interested and I've ordered the book. We can afford to do it but it's a bit scary especially the part about the immune system rejecting the cells. Anyway, that's where I am today. Thanx for making this forum available.

  10. #10
    Join Date
    Jun 2007
    Location
    Vineland Station, Ontario, Canada
    Posts
    36

    Red face Welcome Regine

    Hi Regine,

    Welcome to the forum.....it's always nice to hear from other caregivers. All those emotions you're feeling are very natural, I've been through all of them and then some... My husband is only 54 but he's been told he has the lungs of an 80 year-old man.....which isn't good to hear. Emotions are so prone to run amok when we're caring for someone who's so ill and it's especially hard when you don't have others to talk to. There are no support groups in our area and I've been begging for one for a long while now.

    My husband has pretty well decided to try the stem cell therapy but money IS an issue for us right now. Long story and you'll probably see some of my other posts in different areas of some of what we've gone through this summer. But, I'm determined to raise the funds somehow so we can do it. There's another good book written by David Steenblock and Anthony Payne called "Umbilical Cord Stem Cell Therapy, The Gift of Healing from Healthy Newborns." I would highly recommend reading it in addition to Barb & Jeanine's book. I'm almost through reading it as well and it just adds further proof that this is the way to go. If you're interested in where to order it, feel free to ask.

    Anyway, welcome to the group and please feel free to come and chat, vent or whatever is needed.

    Hugs,

    Mary

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