By way of introduction

[Anastasia]

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,

[kygal]

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

[barbara]

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.

[Anastasia]

:D 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

[barbara]

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.

[kygal]

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 :D

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....:eek:

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

[Anastasia]

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?

[barbara]

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.

[Regine]

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.

[kygal]

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...:rolleyes: 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

[barbara]

I have to agree that some of the Steenblock book is good, however, I had not posted this information before and was somewhat reluctant to, but one of our Pioneer founding members contacted Dr. Steenblock and inquired about COPD treatment. Dr. Steenblock said he did not consider COPD a serious disease and his efforts were going elsewhere. This was a very disappointing answer for sure. His book does give good information on how stem cell therapy works, however, his diet is way to strict for most humans and I was never able to understand exactly why he was eliminating so many foods. Anyway, glad to see you caregiver's are able to be here for each other. I didn't mean to critique or review books in this section, but there are many of us behind the scenes always checking on new clinics, doctors, etc. and the information from SRI was not what we wanted to hear. SRI is the institute that Dr. Steenblock has.

[kygal]

Hi Barbara,

Sorry, I didn't know that Dr. Steenblock has made that statement.....if I had known that before, I probably wouldn't have bought his book.....poohey on him! I do get the impression from his book that he seems to lean more toward brain injuries, CP, etc....more things to do with neurological and such problems. But, that's what his clinic focuses on, isn't it?

It does have some good info it regarding stem cells and I've found it informative that way but as I said, wish I'd known he'd made that comment and I would have found someone else to donate my money to....:eek:

Hugs,

Mary

[barbara]

Hi Mary - This information was only received a short time ago. I too bought his book and "donated" to his cause. I certainly cannot be upset with anyone that is pioneering stem cell therapy, but I can be upset when someone says COPD is not a serious disease. This forum is for us all to learn from. He has been invited to comment on this forum, but so far we have not heard from him. The invitation remains open.

[Anastasia]

I apologize for not responding sooner but I am chest high in boxes as we are moving on Friday! Took advantage of the real estate slump to buy a new home for ourselves.

Nelson had his "stem cell cocktail" on June 5th and is showing marked improvement already. He will be 71 in November and has had COPD for 15 years. He's been on oxygen 24/7 for the last 3 years. (2 bouts of pneumonia within 3 months, finally did him in)

I don't believe there is a problem with cell rejection when umbilical cord cells are used, but I could be wrong.

As to the emotional up and downs...it's like being a newlywed all over again, what a drag sometimes. lol. Sometimes I become furious over some little bit of nothing simply because I'm tired of doing All the physical work around here. Or I feel unappreciated or undervalued. It never lasts long but it's fatiguing nonetheless.

Does your husband suffer with frequent SOBs? I can tell you this for certain...Nelson never has that problem anymore and it is soooooo very wonderful not to see that panic and desparation in his eyes any longer.

Hugs from,

[Anastasia]

We have not chatted in forever! How is the fund raising going? How is Doug doing these days? Did you find out why they rejected his application for oxygen? Something sounds wrong with that. What about the rest of your family? Do you have any children? No, I'm not writing a book but I want to get to know ya, kiddo!

Hugs from,

[Jeannine]

Anastasia

I'm so happy to hear Nelson is showing improvement. I believe that losing the shortness of breath is even more important than losing the O2, because the SOB is what limits our activities - not the O2.

I don't envy your packing and moving. Good luck in your new home.

[kygal]

Hi Anastasia,

So good to hear from you and I don't envy you packing to move at all. We did that 2 years ago and I swore I wouldn't move again till the Rapture comes...:D Also, very glad to hear how well Nelson is doing!

Haven't gotten very far with the fundraising yet....still trying to figure out in my head what might be the best approach to it. We've had some very extenuating circumstances this summer and a lot of people have helped us out willingly and I'm trying to see what might work best when I start looking for funds for something totally different. It's probably me and my pride getting in the way and something I need to work out myself. I won't go into a lot of detail and bore everyone with it all.

Doug is doing pretty well, feeling better these days. He finishes up rehab this Fri. and has now been in there since June 4th (minus a week). He's there 5 days/wk. and comes home on weekends so I've had even more responsibility than I normally would. Needless to say, it's been a trying summer.

Kids.....yepper, I have 2 boys who live in Kentucky. My youngest is married and I have a grandson from him and another grandbaby on the way. My oldest son isn't married and walks to his the beat of his own drummer...:p Doug has 2 kids, a boy and a girl. We have 2 grandsons from his daughter and his son is divorced. My dad's still living and just had valve replacement surgery in Cleveland but is doing very well. He lives summers in Kentucky and winters in Ft. Myers, FL. I also have a brother who lives in Naples but we don't stay in contact much with each other.

As far as the oxygen goes, Doug never applied for it. It's never been addressed because his stat levels stay above the 88% mark and that's the criteria for getting oxygen. I have no idea if he'd be better off with it or not but it's never been brought up. I have to think it's because he's more of a CO2 retainer, which causes more SOB.

Which forum were you all visiting last night? That one sounds like a dandy. I've gotten to where I very seldom read on many of them anymore, it's so much of the same repeat things and not much new info. I just don't have time for that anymore.....I did more when I first got serious about finding out all I could about COPD and do try and keep up with anything new but there's so few Canadian sites that it's hard to stay abreast of things happening here.

So, Ms Anastasia, tell me a little more about yourself now.....since we're only a handful of caregivers here, we might as well all get to know each other as well as possible. Who knows, maybe we'll find even more similarities and see why we react like we do, etc.

Hugs,

Mary

[Susan]

Thanks so much to all of you who are in the same "boat" with me, I guess.
My husband, Howard, was diagnosed in 1989 with COPD. He was smoking at the time and he was told if he did not quit he would not live to be 60. (he was 51 at the time).

When he was 65 we had a big Birthday party for him. He was doing pretty well and not on oxygen.

He is now 68 years old.

The Hurricane Katrina came through this very weekend two years ago. Right after that, Howard became much worse and could hardly move about. He went to the Dr. and they thought he was going to pass out walking down the hall to determine if he needed oxygen if his levels dropped to 88. The Dr. himself said they were worried about him but that he had "adapted" to a lesser consumption of oxygen over the years.

Long story short, he has been on O2 since the hurricane (2 years) and is becoming more dependent on it. We are scheduled for stem cell treatment on Sept. 20. He is so SOB now it is hard for him to carry on a conversation and to walk for more than 15-20 feet without resting (on oxygen).

Since the Dr. does not recommend flying we will be driving to CA (at least days there and 5 days back). We are NOT LOOKING forward to the trip but we ARE looking forward to getting it done and getting back home. Howard insists on doing some of the driving but has conceded to let me do some too (that shows you how desperate he is - HA)!

Just to let you know I appreciate all of your sharing of your situations and hope I have not bored you with ours.

Susan

[Anastasia]

Hi Susan,

Nelson and I drove from Palm Beach County Florida and it was a great trip.

Where's your starting point?

[barbara]

My chiropractor said a person can become dependent on O2. I am not advocating anyone should quit using O2 when they desaturate to unacceptable numbers, but I have noticed that I have almost had to learn to breathe deeply on my own again. At first it was real scary and I was always looking at my oximeter. Now I can tell when I am at the point I need to put the O2 back on. I can easily take just a very few deep breaths and get back up to 90 with no O2 when I slip to 87 or 88, but if I am really exerting myself, I am not at the point to go without O2 for very long. It is a relearning process and I will argue with anyone that says it isn't. I don't think I would even be getting the opportunity to learn to breathe on my own again if my lungs weren't regenerating. I think Howard will greatly benefit, but he must be patient. I know Nassin was taking a lot of meds and was able to reduce his usage including getting off of prednisone for good. We are looking forward to your road reports since you said Howard would be taking his laptop.

[Susan]

Anastasia,

Howard and I will be leaving from our home 15 miles east of Macon, MS. We live right on the AL/MS state line. Howard has calculated it to be about 2,000 miles from here to San Diego.

Barbara,

Thanks for the insight about breathing. Actually, Howard's sats on O2 are often better than mine! He stays in the 90s but starts to get nervous when he drops to 92.

His Power Lung was delivered a couple of days ago. We got the yellow one, the easiest. He said he could not do the recommended number of breaths but will keep trying. I know most of you "swear" by this device.

Our Eclipse portable arrived and we spent most of the afternoon getting to "know" it. Haven't named it yet tho - LOL. Probably should since it will be part of the family for a little while.

Susan

[barbara]

Susan - If Howard can't do it, he shouldn't try for more than one or two puffs on the easiest setting for now. This is something to note in his journal if you are keeping one. I couldn't puff on mine either. I did buy the sports model for athletes by mistake, but even on the easiest setting I wasn't able to do more than a few puffs. I have just recently increased to 4-5 times per day usage of 3 sets of 10 each time at the medium setting. I am increasing because I am getting very impatient about getting off the O2 permanently and I am trying this. It is comparable to a workout if done properly. Maybe, he could take it with him on the trip and try a puff every hour or so. He will strengthen his lungs with it, I guarantee it. Everyone tells me I'm an old windbag now and they used to just call me an old bag, so it must be working.

[Jeannine]

Anastasia

I have to agree with Barb. I was too dependent on O2 and was convinced that I had to keep my Stats at 97%. Like Howard I would panic if I dropped below 92%. Since I've given up using O2 pretty much during the day now, I find that I had to teach myself to breathe again. I occasionally drop below 88% if I do alot of walking but I bounce back to over 90& if I stop walking and take a few deep breaths.

Howard - you are a character and remind me of my husband who is also Mississippi born.

My husband named my Eclipse too. JUST MAKE SURE TO UNPLUG THE ECLIPSE FROM THE LIGHTER SOCKET BEFORE YOU TURN OFF THE CAR. leaving it plugged could drain the battery.

[barbara]

Jeannine - What did your husband name your Eclipse? If it is something real bad, I may have to edit the post, but let's hear it anyway. We're all adults. It's probably something cutesy and you just don't want us to know. We found about your martini/swordfish tank top, we will find out about this too.

[Susan]

To all:

We watched the Power Lung DVD together today and Howard DID do two sets of 10. However, we never felt we had the "inhale" part right as we could not hear any air coming in. However, we DID hear air going OUT on the 1 setting. So he is trying.

Jeannine, I did not mean to mislead you. Howard is not a Mississippi native, nor am I. He was born in Nebraska (one of those corn-fed boys, don't you know) and I was raised in North Alabama. Howard made it to Alabama through a circuituous route from NE through Texas and then here.

He IS a character and altho I have been told it takes a bit of time to get to know him, everyone who knows him really feels he is a "character" - AND a very special one!

I am looking forward to us meeting one day soon and you can see for yourself.

I am sure your husband and mine will find a lot in common. I feel I have a lot in common with you because you were my first "personal contact" so to speak with the Pioneers. I am very honored to have spoken with you personally.

Being in this forum is almost like being at a new school where you make new friends day by day.

I love the idea of a Stem Cell Diet cookbook. Howard's niece is dietician and she has sent a few recipes. Some even included "the other white meat" which Howard is hoping he can find someone to verify it is acceptable!!

If I have veered off into too much personal stuff here, I sincerely apologize.

Susan

[rosech44]

If You Mean Pork--it Is Considered A Red Meat And Off Limits---sorry

Rose

[Jeannine]

Not to keep anyone hanging -- my in-laws named my Eclipse R2.

Susan

I am working on a Stem Cell diet cookbook. I have to thank Fran (one of the Pioneer founding members) for telling me about the software I can use to do this.

Give me a month or two to get this cookbook going. I do have a former chef who works for me so I'm sure I can get him to test some of these recipes too.

[Susan]

Jeannine,

That cookbook sounds great - and delicious! Can't wait for you to get it published! Put me first on the list for one!

Susan

[barbara]

I am sending recipes for this too Jeannine and I hope they include seitan, the other "wheat" meat. Also, we need to throw in lots of tofu recipes for John. He has had to give up roadkill for 6 months.

[Regine]

Ward is now out of breath a lot. This started the end of June right after we got back from a trip to Europe (our first). And since he's a mouth breather it makes it more difficult for him to get air. And 4 weeks ago he slipped on a slope in the yard and fractured a couple of ribs which has been a huge setback because it hurts him when he breathes. Anyway, my son and I talked to the doctor for the stem cell clinic on Tuesday and Ward was saying let's go for it and then today we found out from his primary care doctor that after a CT scan for something else when he was in the hospital, an aeortic aneurism showed up and she doesn't know if it's the old one that was repaired 15 year ago or a new one. So now we have to wait to find out that. So I'm feeling pretty discouraged right now.

[Regine]

By the way, thanx in particular to Barbara, Kygal and Anastasia for writing to me.