First step

[kygal]

Sob

Anney,

You sound like my husband. His last FEV showed 13% and his worst times are trying to carry on a conversation with family and friends. They just don't understand why that makes you that way. Hang in there hon.....you know we're all rooting for you and who knows, maybe you can come to Canada and travel down with us. I'm trying my darndest to figure out how to get Doug there. The sad thing is that the both of you would be hard pressed to travel by car that far...so if you're up to flying, I'd say you'd be better off flying to CA.

Hugs,

Mary

 

[barbara]

Sounds a lot like the rest of us

Anney and Mary, Your COPD stories sound so familiar. Wonder where I have heard them before hmmmmmm. The great news is that we have been given another chance for ourselves and those we love. I am hoping beyond hope that all of you that want to try stem cell therapy can accomplish your dreams. Anney - Can you imagine trotting out to the car with no SOB or O2 (if you are on it). How about shopping again or simply getting up in the morning and actually feeling good. How about being able to go somewhere and stay all day and not worry about running out of O2? And Mary - I know you would be happy to have Doug do all that too. We need to stay positive and this will happen for you all. As you can tell, I am in a real good mood tonight because I can already do all of the things I mentioned. I have just had a great day and want to pass some of that optimism on to all of you.

 

[kygal]

Thanks Barb

Barb,

It's very obvious that you're in a great mood and I don't blame you one bit for wanting to share it with others.... I'm sooooooo glad that you're feeling so much better...and it's just going to continue.

You better believe I'd LOVE to get in the car and go somewhere and not have to worry about Doug not being able to keep up, having to rest, etc. But someday soon.....I'm gonna see it!

Hugs,

Mary

 

[Anastasia]

FEVs

Hi Bev, Mary et al...

In June of 2006 the Mayo clinic rejected Nelson as a candidate for LVRS...his FEV was 11%. God only knows what it was a year later when we drove the 2,400+ miles to San Diego. You need a comfortable car and a portable concentrator (like the Inogen) that can be plugged into the cigarette lighter.
If Rotech is your liquid oxygen supplier, they will deliver a resevoir to the hotel in San Diego...ours was waiting for us when we arrived. If Rotech is not your supplier...see if you can change...they have been great from the beginning!

 

[barbara]

Where there's a will there's a way

Mary - I was lucky in that we own a small 19' RV. It was perfect for the driving trip from Denver. I even took two of my dogs so that my husband wouldn't have quite so much on his hands at home while I was gone. I don't know if there is a possibility of anyone loaning you something like that. It sure made it nice for me. I took a large liquid cannister of O2 and had to deal with Apria in San Diego for a refill. You can read about the fun I had with them when you get the book. If you use Apria, allow an extra day in San Diego. HA! The Inogen idea is good especially for the trip to the clinic.

 

[kygal]

Oxygen

Hi gals,

Believe it or not, Doug isn't on oxygen. Even with such a small amount of lung capacity, he doesn't qualify for it. So, for now, that won't be a problem. I'll have to do some checking around for an RV or something similar that we could maybe borrow. I think I know someone who has one so now you've got me thinking again....

Hugs,

Mary

 

[anney_uk]

Oxygen

Mary - it is hard to believe Doug isn't on oxygen, it just doesn't make sense.
Surely his fev1 is low enough to qualify - is this just the Canadian medical service that decides. Poor Doug - the oxygen is a help to me, I can't imagine
managing without it.

The rv sounds good but would you drive it? I couldn't manage one and my husband doesn't drive so it would have to be planes all the way for me.

 

[Anastasia]

No Oxygen????

Mary, How can that be? Nelson's level was around 20% when he started oxygen. What are the criteria for oxygen.... I don't know anything about health care in Canada, but that doesn't sound right.

 

[kygal]

Oxygen

Hi Anney & Anastasia,

According to what I've been told and read, oxygen levels have to be 88 or below to qualify for oxygen. Doug's levels stay above 90 and have been as high as 95. Doesn't make sense, I know...and to see him not able to catch his breath and struggle to breathe, it worries me senseless. I just keep praying that we'll see some improvement of things with this second round of rehab.

Anney, I would HAVE to drive the RV, if we borrowed it. Doug's already said he didn't think he could fly with the altitude and pressure changes, so we'll have to figure something out.

Anyway, back to moving furniture upstairs...I want to get it done before I pick Doug up tomorrow as we're getting the wall knocked out between 2 bedrooms to make one big master. Nothing fancy for now but at least there will be more room.

Hugs,

Mary

 

[barbara]

SOB vs O2 needs

It doesn't seem to make much sense that SOB and not needing O2 can possibly go together, but it is true. If Doug maintains his sats the way Mary says, then he is very lucky to not have to have O2 on top of all his other problems. I was SOB all the time and I used O2 24/7. Back to the RV. The one we have is a van conversion, only 19' long. You can park it in most handicapped spaces and it is easy to drive. My son got sick coming home from my treatment and I ended up doing some driving in the Colorado Rockies no less. The nice thing was that he laid in the bed in the back while I drove. There is a refrigerator and a bathroom and running water. Very comfortable. We stayed in La Quinta's because I took 2 of my dogs with me, but my husband and I used to take it birdwatching and if we were in a remote area the bed is a queen size. I am looking forward to bird watching again. I have really missed it. Would it be possible with your great ambition to get Doug for treatment to approach a service club (Kiwanis, Optimists, etc.) and ask them to help sponsor the rental of such a van? Or how about the van rental place. Offer to put a big banner on it and advertise for someone in exchange for getting to use it. We used as much in gas money as plane tickets, but the comfort and not having to fly for me was worth it. Unless you are really tiny, ours is an automatic and easy to drive. It is called a Pleasureway and is manufactured in Canada. We were able to take everyone to dinner that had gotten treatment that day in it, even Jim who was in a wheelchair. I know if Doug is really feeling ill, this might be the way to go. Flying is so difficult with or without O2 these days and the trip would really be tough on him. Driving is not all that easy either, but he could enjoy the scenery and leave the driving to you.

 

[Bev12452]

my transplant visit

Today was my visit with the transplant team did the blow till my eyes pop and my fev is 12% not knowing what everything means not worried still feeling the same 2 liters not all the time in walks the Dr and off we go test he wants done and tells me I have no more time to wait I need to get started to get listed for good this time every other toime I backed out anyway by the time I got to the car I was in tears life expectency is still only 5yrs if you make it off the table everytime you go anywhere you need a mask but the final point that cut to the quick need to get rid of my two cats just so they don't scratch or bite not that they ever have but just in case I am so depressed I so need to find some good news from all the people that have gone before me I will talk to the stem cell dr on Monday how long after I talk do I get to go I have the book but I just can't concentrate on it right now can someone just send me some good news on their progress Barbara and Jeanine I look towards you to br my guide through this voyage of my life thanks Bev

 

[kygal]

Your transplant visit

Bev,

I'm not one of the stem cell recipients but I just had to write you after I read your post. I understand that you're depressed from the news you received and you have about the same lung capacity my hubby does (he's the patient) and he's also been given 2-5 years. You can either believe that or remind them that they're not God and only He can determine how much longer you have!

Doctors can only suggest things but they can't follow us around and force their suggestions. You know how you feel.....and you said you don't feel any different than before. You also know your body, they don't. Please don't allow yourself to get down because that's the start of a downward spiral, gather all the information you can and talk to Dr. F when he calls. He's a wealth of information, I've already spoken to him about my hubby.

On another note, I hope some of the recipients jump in here and give you encouragement. But, know that I care and am sending BIG hugs your way right now.

HUGS,

Mary

 

[barbara]

The long walk to the car

Bev - There are others on here that have had that long walk to the car. I am doing very well as are all the others. There have been no failures and none of us have been asked to get rid of our beloved pets or take medicines and wear masks for the rest of our lives. You must get scheduled immediately if that is what you want to do. Please call and talk to the doctor again if you wish and leave a message as to the urgency. You can also contact Ed here on this forum to see if things can be speeded up. We are forever hoping to avoid all of this, but unfortunately with COPD it is not to be. I dithered and kept worrying and finally it hit me that things weren't going to get better. I immediately set my appointment and that was that. I don't regret it for a minute and please know that I will be here to help you in anyway I can. If you need the phone numbers again or whatever, let me know. Please, try to calm yourself which I realize is very tough when you get news like you did, but stress is going to make you wind up with horrible SOB. Concentrate on getting things together to get stem cell treatment if you have decided this is what you want. Do it for you and do it for all the people and animals that love you.

 

[Bev12452]

thank you all

I just needed to know that I wasn't alone my husband is ready to go now but the rest of the family that I have talked to don't think it is the right move especially when I said I had to go into mexico for the cells than it was how do you know they are giving you what they say and I can't answer except to beleive that you are all telling me the truth and are not scam artist I have had so many differant people giving me advice my head is pounding I did call Ed ad he talked me down but it really is taking a leap of faith I am so confused and scared I want so much to beleive this is the cure but also afraid if it doesn't work I will have to listen to them all thank you for the hug only people that deal with this everyday know how it feels my brother in law even went on to say at least with the transplant you willhave 5 good years I am not ready to go in 5 years I am only 55 I guess I am not as brave as you all were I never thought it would come so fast I have been coasting for a good 10 years never wanting to admit that I was sick I did't look sick it hasn't been until this year I would go out in public wearing o2 I have an appointment with the clinic dr for my phone call on monday than I call ed and jump Please be there to catch me looking forward to your help Bev

 

[barbara]

Are you ready to be a Pioneer

Bev - Only you can make this decision. It is your life. Unfortunately, when they tell you 5 good years with a lung transplant, that is not the whole story. I did a lot of research when my pulmo mentioned transplant (I am 57) and decided the risks for gaining maybe and not for certain, 5 years were just too much for me. The Pioneers were formed because we wanted something other than what conventional medicine was offering which when you think about it is pretty scary. Someone doing invasive surgery that may result in death? Not for me. I don't know what to say about your concerns. We went through the same things. Nassin was the first. He had no one to help guide him in his decision. Then Jeannine and I. We had our small Pioneer group we had formed, but no one had had umbilical cord stem cell therapy. Nassin had adult stem cell therapy in a nice clinic in Argentina. I just got so sick from worry that once Jeannine decided to go, I decided right then and there to join her. I have never e-mailed anyone privately on this forum and not told them of the several clinics that we are aware of that give treatment. The person then can contact them and ask questions of the doctors if they choose. I am not a doctor and I don't pretend to be. I am a very happy patient with 5 cats however. I had a very simple procedure done at a very nice small hospital. So what it if it is in Tijuana. What exactly does that mean I would ask your family if I was you. The technology for stem cell therapy is here in the U.S. Our FDA does not allow the procedure because there haven't been clinical trials and years worth of studies. I am asking you if you have time to wait years for them to do this process in the name of safety. How safe is it for them to let people die when this technology exists? This is criminal in my mind and I am very thankful to that small modern hospital in Tijuana and the Mexican government for allowing me to have my life saved with this procedure. I fully intend to get a lot more than 5 years from it because the therapy actually causes regeneration of the lung tissue. The doctor will be more than kind and will explain all of this to you and any family members who wish to listen in. He is very intelligent and a Pioneer also. I never felt in anyway that he wanted to relieve me of my money, only my COPD symptoms. You also have to consider when you get on the transplant list, it doesn't mean you get a transplant immediately. The cells for the umbilical cord stem cell therapy usually take 3-6 weeks to be prepared for you. When I went, it was only 3 weeks. Now that word is getting out about the success of this treatment, it is taking longer to get in to have the treatment done. I hope this helps. I think your talk with the doctor will be very helpful to you. We started the forum and the book so that other people could gain hope and reassurance from our experience. You just have to decide whether or not you can be a Pioneer. The doctor has not had anyone that did not get some improvement from stem cell therapy and he treats a lot of diseases. Bev - I want you to know that you can count on us to be with you every step of the way. I sincerely mean that. Try to settle down a bit and pet those cats. That is always soothing to me. I admire your husband and I hope he can be there when you have the talk with the doctor as that will be very helpful also. Don't forget to make up the list of questions as we have all suggested. Perhaps you found out about this forum for a reason. Have you ever considered that? I feel that way when I think about the events that led me to finding the others in the Pioneer group. As you know if you read the book, as soon as I get off the O2 for good, I am giving my nose hose to my cats. I would think this might be a goal for you also. Hang in there!!!!

 

[Bev12452]

thanks again

I hope I didn't hurt your feelings I am ready to go I do think that I can do this and God will take care of the rest I don't think the transplant will give me the quality of life that I want so I am going to join your pioneer club and when the time comes I only hope that I can make the next person as comfortable with ther choice as the people on this web site have made me Barbara thank you so much for the extra typing you did to make me feel better I believe in karma and what you put out into the universe comes back to you you and Jeanine will be blessed because of the good things you are doing and by being there when needed thank you and thanks to all who have started this voyage with me hopefully it will be a calm journey Bev in Fl

 

[barbara]

No hurt feelings

Part of the nice thing about feeling so good is that I don't get my feelings hurt and you certainly said nothing to ever make me think anything but that you were a little scared. You know we will be rooting for you Bev. Also, as far as extra typing, I think I just am very long winded and write that way too. You will make a good Pioneer. Be prepared to feel a lot better and plan on buying a lot more kitty litter.

 

[Anastasia]

Fie on Transplants!

Bev,

Please throw your depression out of the window! Nelson, my honey, has had COPD for many ears. His FEV 1 was 11 in June of 2006...when the Mayo turned him down for LVRS...he was 69-years-old. In June of 2007 he had a stem cell cocktail for COPD, Type 2 Diabetes and Congestive Heart Failure. I am thrilled to report that everyday sees improvment for him. Yesterday he scooted from one end of the house to the other and had forgotten to put on his nose hose...This is becoming an almost daily occurence as he struggles less and less to breathe. Today we are closing on a two-story house that Nelson found and fell in love with...In May he wouldn't even have looked at it because of the stairs. He negotiates those stairs with very little difficulty (his sob is momentary). He is now 70-years-young. His doctors are all following his progress very closely...his Pulmonologist has said he will send parients for the treatment when/if he sees satisfactory improvment in Nels. Needless to say we expect lots of people from South Florida will be trekking to San Diego. Oh yes...we have a Cocker Spaniel who does scratch us when his claws need a trimming! Nels would never part with Ernie.

I will always be grateful to Nassin, Barb and Jeannine for their willingness to share this incredible treatment with all of us.

 

[Bev12452]

encouraging words

Anastasia, thank you so much for taking the time to write everytime I read the kind and encouraging posts I cry than I run and tell my husband what was written and he says lets go I really think that there is still hope and that I too will be able to run around and forget the nose hose even my brother who I really didn't think would understand said to do it cause he knows if I had to wear a mask I would never leave the house I am so vain but thank you and I hope your huband continues to improve one more question did you tell his pulmo and primary before you did it or did you just go thanks again Bev in Fl

 

[Anastasia]

Nelson's Doctor's

Are all very forward thinking Bev so he discussed it with all of them before he went. In fact his Pulmonologist read everything Nelson gave him and then spent quite a bit of time discussing it with Nelson. The treatment is so new none of them said they could endorse it, however ALL of them said "If it were me, I'd have the treatment." To me it's very interesting that 4 of his 5 doctors are foreign born: I really think that influences their outlook towards medicine. Or perhaps they simply aren't heavily invested in the pharmaceutical companies who stand to lose lots of money.

I don't imagine this has been much help as an answer, I apologize for that. Do what you are most comfortable with.

Also, I know the concerns of friends and family...ie. Is it a scam etc. Nelson and I finally decided to make the leap of faith, so to speak, and are delighted beyond belief that we did. All great achievments are accompanied by risk of some type. Think of the astronauts! All you are risking here is some money which if you think about is not very important in the scheme of things and certainly of NO value when compared to your life! ( We are Not rich and had to finance the treatment LOL)

Please ask your husband to join Mary and me on the Caregivers forum...I'm hoping more partners will chime in with their questions, concerns, successes etc. Your husband is very supportive, which is great!

Hugs,