I thought I would start a new thread to post information on our progress. I hope others that have had treatment will also post here. Today is the 11 week anniversary of my treatment. It is also Jeannine's because she is my stem cell mate. Once again, Happy Anniversary Jeannine. To date, the progress I have made is pretty outstanding considering I have not hit the 90 day mark when the doctor told me I should notice changes. I no longer have any SOB. I can sleep on my back. I can bend over. I can climb stairs. I got up to 4.0 mph on the treadmill (only for a minute though) two days ago without having my sats drop below 90. This is with O2 turned up however, but a feat that would have been impossible before at any rate. I can walk around without O2 and not be uncomfortable at all, however my sats do drop, so I don't make it a habit. It comes in handy though if I just want to let the dogs out or chase raccoons out of my yard (for those of you that don't know me, I have a non profit bird refuge with lots of ducks and raccoons like to eat ducks). I can breathe deeply and no longer have any tightness in my chest. I have a manual peak flow meter that I used to average around 200-250 on when I exhaled into it. I am now getting at least 300 when I am extremely fatigued and 450-550 when I am not and even got 700 once. I have to make sure to take my meds because I don't feel like I need them and sometimes I totally space it out. I used to watch the clock to see when I could get that next "fix". I am taking them as instructed however, because that is what my doctor where I had the therapy has asked me to do. I never use a rescue inhaler at all as I don't need it. I can eat and not get so uncomfortable that I feel like I can't breathe. I am turning my O2 down to 1 lpm (the lowest setting) and turning it off for short periods while sitting as long as I maintain a 90-91 on my O2 saturation levels. I can recover very quickly (within seconds) if my sats drop while exerting myself. It used to take sitting down and waiting a couple of minutes. Now, I just slow down and recover almost instantly. I am not SOB in the morning so that means I can hop in the shower and not be leaning against the wall gasping and wishing I lived in the 1500's when people only took an annual bath. I feel more calm and not so uptight about everything. I don't have tons of phlegm like I used to. I look forward to the next round of new things I can do. I may have forgotten something here because these little improvements sneak up on you. I have kept a journal and looking back on it, my days were mostly filled with SOB. Good riddance SOB. I will not miss you one little bit!
Anniversaries and milestones
- Thread starter barbara
- Start date
Barb
Happy anniversary to you as well!
I wish I had the same good news to report, but I caught a cold from my co-workers two weeks ago and haven't been able to shake it. It continues to hang on. As a result, I have not made any progress these past two weeks although I haven't gone backwards either. I can still breathe deeper and go without my O2 for long stretches while sitting.
Like Barb I often do things without my O2 like run to the kitchen during a commercial to grab a drink, run to the bathroom, get out of my car and go to the mailbox (I hadn't done that in 2 years) but I still desaturate when I do.
I typically use my inhaler once or twice a day - not every four hours like before. I used it at 7:30am today and it's almost 3:00pm and I still have no need to use it. The times that I am SOB have been reduced by at least 50% and I am hoping that if this cold finally goes away I will notice more and imore improvements.
I took two Benadryl this morning hoping it would help this nasal congestion and post nasal drip which seems to be my main reason for coughing and within an hour I could breathe better than I had in several years.
I have lousy numbers on my Peak Flow Meter (always have) before the Benadry I registered a 58 (FEV1 equivalent about 20%) but after Benadryl it was 85 (FEV1 equivalent 28%). Not very good numbers but 28% is my usual FEV1.
Happy anniversary to you as well!
I wish I had the same good news to report, but I caught a cold from my co-workers two weeks ago and haven't been able to shake it. It continues to hang on. As a result, I have not made any progress these past two weeks although I haven't gone backwards either. I can still breathe deeper and go without my O2 for long stretches while sitting.
Like Barb I often do things without my O2 like run to the kitchen during a commercial to grab a drink, run to the bathroom, get out of my car and go to the mailbox (I hadn't done that in 2 years) but I still desaturate when I do.
I typically use my inhaler once or twice a day - not every four hours like before. I used it at 7:30am today and it's almost 3:00pm and I still have no need to use it. The times that I am SOB have been reduced by at least 50% and I am hoping that if this cold finally goes away I will notice more and imore improvements.
I took two Benadryl this morning hoping it would help this nasal congestion and post nasal drip which seems to be my main reason for coughing and within an hour I could breathe better than I had in several years.
I have lousy numbers on my Peak Flow Meter (always have) before the Benadry I registered a 58 (FEV1 equivalent about 20%) but after Benadryl it was 85 (FEV1 equivalent 28%). Not very good numbers but 28% is my usual FEV1.
Happy anniversary
Since Barbara reported some very good news, I'll add my comments from a recent trip to the mountains. My daughter invited us up to her place to celebrate Fathers day. We left on a Friday afternoon . I usually dread going to her place, not because of her, but the 6,200 ft elevation at her home in Truckee, CA which has been a problem as you can imagine. I traveled with my trusty Inogen One set at 3 lpm and with some deliberate planning, even walked around at the Squaw Creek Lodge at 8,200 ft elevation with very little problem. My family was glad for me as they said it was a real improvement from previous visit about six months earlier. I didn't feel the usual SOB to my every movement. Even played a game of croquette on my daughter's lawn. A feat for me and I'll take it as a good news sign.
Since Barbara reported some very good news, I'll add my comments from a recent trip to the mountains. My daughter invited us up to her place to celebrate Fathers day. We left on a Friday afternoon . I usually dread going to her place, not because of her, but the 6,200 ft elevation at her home in Truckee, CA which has been a problem as you can imagine. I traveled with my trusty Inogen One set at 3 lpm and with some deliberate planning, even walked around at the Squaw Creek Lodge at 8,200 ft elevation with very little problem. My family was glad for me as they said it was a real improvement from previous visit about six months earlier. I didn't feel the usual SOB to my every movement. Even played a game of croquette on my daughter's lawn. A feat for me and I'll take it as a good news sign.
Look Ma - No O2
This may not seem like much to some people, but I was able to shower without my O2 on Sunday and today, Tuesday, I ate lunch without it also. Lunch lasted for 1 1/2 hours so I think this is a milestone. I was able to maintain a 90-91 O2 saturation. I never knew it could be so nice to dine "alone".
This may not seem like much to some people, but I was able to shower without my O2 on Sunday and today, Tuesday, I ate lunch without it also. Lunch lasted for 1 1/2 hours so I think this is a milestone. I was able to maintain a 90-91 O2 saturation. I never knew it could be so nice to dine "alone".
I'm inclined to believe.....
This morning I decided to celebrate my 12 week anniversary since treatment and get on the treadmill. Now, you know I may have something seriously wrong with me if I am celebrating anything on a treadmill. This is also my 21st wedding anniversary today. Anyway, to make a short story long as I am inclined to do, I was cranking away at 3.5 mph for about 4 minutes. I usually can get up to 3.8 now with no problems, but it seemed a little difficult this morning. My sats actually dropped to 88 and I thought, Oh no, here comes a set back. I then noticed that I had the machine on a 4 incline. I may not have had any formal spirometry tests since my treatment, but common sense tells me that to be able to accomplish what I did this morning, something is getting repaired inside me and is starting to work again. I continued for 11 more minutes at 3.8-4.0 with .5 incline with my sats at 93. HAPPY ANNIVERSARY JEANNINE I'm inclined to believe we did the right thing.
This morning I decided to celebrate my 12 week anniversary since treatment and get on the treadmill. Now, you know I may have something seriously wrong with me if I am celebrating anything on a treadmill. This is also my 21st wedding anniversary today. Anyway, to make a short story long as I am inclined to do, I was cranking away at 3.5 mph for about 4 minutes. I usually can get up to 3.8 now with no problems, but it seemed a little difficult this morning. My sats actually dropped to 88 and I thought, Oh no, here comes a set back. I then noticed that I had the machine on a 4 incline. I may not have had any formal spirometry tests since my treatment, but common sense tells me that to be able to accomplish what I did this morning, something is getting repaired inside me and is starting to work again. I continued for 11 more minutes at 3.8-4.0 with .5 incline with my sats at 93. HAPPY ANNIVERSARY JEANNINE I'm inclined to believe we did the right thing.
barrybrooks
New member
Stem cell research
Currently, Dr. Keshavjee and his team are researching ways in which gene therapy can be used to fix injured organs, since the lung is a complex and fragile organ that is vulnerable to injury and rejection. His lab is also looking at how genes can be used to modify and repair lungs to improve transplant results. The team's ultimate goal is to eliminate the need for transplant by using regenerative medicine to grow healthy replacement lungs.
For more information contact
robert.thompson@uhn.on.ca
Currently, Dr. Keshavjee and his team are researching ways in which gene therapy can be used to fix injured organs, since the lung is a complex and fragile organ that is vulnerable to injury and rejection. His lab is also looking at how genes can be used to modify and repair lungs to improve transplant results. The team's ultimate goal is to eliminate the need for transplant by using regenerative medicine to grow healthy replacement lungs.
For more information contact
robert.thompson@uhn.on.ca
Another anniversary
I should have gotten my stem cell therapy on a Friday because I am always a day late it seems saying Happy Anniversary to Jeannine, my stem cell mate. Well, another week has gone by and now we are at the magical 90 day + mark where supposedly things are going to start to shake, rattle and roll. I had a lousy 4th of July with some kind of allergic reaction to some newly mowed grass at a picnic I went to. It was just like old times when I used to have some nasty asthma episodes. I decided to take a full rest yesterday and didn't exercise, take supplements or play with my jackhammer. I didn't even look at my oximeter. I did do my peak flow meter and got a good reading and let it go at that. Today, I am bouncing back mood wise (I will admit the grass episode depressed me quite a bit as I had to leave the picnic and go home) and spent the entire morning out with my ferrier trying to get 3 decrepit horses shod and trimmed. I have not been able to go out and help with this chore for over one year. In fact, it was the first time I had met this ferrier. I felt it was a real milestone. I am no closer to losing the O2 at this point, but the rest of my progress is all for the better except for the grass overdose on the fourth.
I should have gotten my stem cell therapy on a Friday because I am always a day late it seems saying Happy Anniversary to Jeannine, my stem cell mate. Well, another week has gone by and now we are at the magical 90 day + mark where supposedly things are going to start to shake, rattle and roll. I had a lousy 4th of July with some kind of allergic reaction to some newly mowed grass at a picnic I went to. It was just like old times when I used to have some nasty asthma episodes. I decided to take a full rest yesterday and didn't exercise, take supplements or play with my jackhammer. I didn't even look at my oximeter. I did do my peak flow meter and got a good reading and let it go at that. Today, I am bouncing back mood wise (I will admit the grass episode depressed me quite a bit as I had to leave the picnic and go home) and spent the entire morning out with my ferrier trying to get 3 decrepit horses shod and trimmed. I have not been able to go out and help with this chore for over one year. In fact, it was the first time I had met this ferrier. I felt it was a real milestone. I am no closer to losing the O2 at this point, but the rest of my progress is all for the better except for the grass overdose on the fourth.
Milestone for sure
Larry called the COPD Foundation yesterday to see if they had any information on stem cell therapy for COPD sufferers. They gave him www.stemcellpioneers.com I was so thrilled because this means we are reaching people and letting them know that there is hope. Way to go Larry. He gets a gold star for finding this out.
Larry called the COPD Foundation yesterday to see if they had any information on stem cell therapy for COPD sufferers. They gave him www.stemcellpioneers.com I was so thrilled because this means we are reaching people and letting them know that there is hope. Way to go Larry. He gets a gold star for finding this out.
Barbara, first of all.....What is SOB. It sounds like you are having a great success with your treatment. My friend went to Dr. Diaz in Mexico and had live cell implants. It worked very well for him, but he has to go back in August for a booster. I think he would do better with stem cells. I have been reading your post and would like to know what doctor you used and where he is located. I'm excited that you have found a treatment that works for you. Hope to hear from you. Bonnie
Sob
Hi Bonnie - SOB means shortness of breath for those of us with COPD. I am sure your friend has a lot of it with severe COPD. I am glad you are joining us. I will send you the information you requested. There are several of us here on this forum that have had stem cell treatment. When you read through the posts it will show on the bottom of what we posted the date we got treatment. The members list also shows who the Pioneers are as far as the group we originally formed to research stem cell therapy. Nassin is our honorary president. This forum is for everyone who wants to discuss stem cell therapy. I certainly learn new things everyday. Welcome to you and all the other new members.
Bonnie - When did your friend have his first treatment with live cells? I am just curious to know how close together treatments are for him.
Hi Bonnie - SOB means shortness of breath for those of us with COPD. I am sure your friend has a lot of it with severe COPD. I am glad you are joining us. I will send you the information you requested. There are several of us here on this forum that have had stem cell treatment. When you read through the posts it will show on the bottom of what we posted the date we got treatment. The members list also shows who the Pioneers are as far as the group we originally formed to research stem cell therapy. Nassin is our honorary president. This forum is for everyone who wants to discuss stem cell therapy. I certainly learn new things everyday. Welcome to you and all the other new members.
Bonnie - When did your friend have his first treatment with live cells? I am just curious to know how close together treatments are for him.
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Barbara, my friend has his treatment February and he is suppose to get a booster in August. If he could find something better or longer lasting, he would be thrilled. He has done much better with the live cells, but would like to do even better. He is 76. Thanks for the reply.
15 weeks
This is my 15 week anniversary since getting uc stem cell treatment. I just sent an e-mail to Larry about something else, but I told him that anyone that doesn't get stem cell therapy for any reason other than lack of funds, just doesn't know what they are missing. I feel really good. I am breathing normally, never SOB, feeling calmer than I used to, watching as I slowly get a few more moments each day that I can go without O2 and keep my sats up. I ate dinner tonight without O2, went to a neighbor's house for about 15 minutes without O2 and did my usual letting the dogs out, checking the ducks, feeding the birds without O2 or any feeling of breathlessness. I was barely able to do those things before with O2 and now I am doing them all without it in only 105 days. It is really miraculous. Mary Jo I believe is the next Pioneer to hit the trail. We are all excited about it and wish her well. Happy Anniversary to Jeannine, my stem cell mate.
This is my 15 week anniversary since getting uc stem cell treatment. I just sent an e-mail to Larry about something else, but I told him that anyone that doesn't get stem cell therapy for any reason other than lack of funds, just doesn't know what they are missing. I feel really good. I am breathing normally, never SOB, feeling calmer than I used to, watching as I slowly get a few more moments each day that I can go without O2 and keep my sats up. I ate dinner tonight without O2, went to a neighbor's house for about 15 minutes without O2 and did my usual letting the dogs out, checking the ducks, feeding the birds without O2 or any feeling of breathlessness. I was barely able to do those things before with O2 and now I am doing them all without it in only 105 days. It is really miraculous. Mary Jo I believe is the next Pioneer to hit the trail. We are all excited about it and wish her well. Happy Anniversary to Jeannine, my stem cell mate.
16 weeks
Today is my 16 week anniversary. For some reason today, out of the blue, I have been able to be without O2 quite a lot without my sats falling so quickly. I had the farrier here for my 28 year old unruly horse and had to run out there a couple of times, I drove over to my mom's house because she wouldn't answer the phone (10 minutes), I was in and out of the house several times doing things and all without my O2. I felt really great today. What a fantastic 16 week anniversary. I am still going strong. I ran out of Advair this morning and just went to get some more and didn't wear my O2 in to the pharmacy. I was so proud. I didn't need to rush home and take some. I will get around to it in a little bit. I should have said I ran out of Advair last night. I have had none today. What more can I say? I never thought I would be so excited about making reports on breathing, but when you have had to struggle for years and then you have a day like today happen, it is not even something I can begin to describe. Those little stem cells are working overtime I think. I have been paying them well. I stick to the stem cell diet and tonight I had broccoli, tofu in peanut sauce and brown rice. Those little guys should appreciate that! Happy Anniversary Jeannine.
Today is my 16 week anniversary. For some reason today, out of the blue, I have been able to be without O2 quite a lot without my sats falling so quickly. I had the farrier here for my 28 year old unruly horse and had to run out there a couple of times, I drove over to my mom's house because she wouldn't answer the phone (10 minutes), I was in and out of the house several times doing things and all without my O2. I felt really great today. What a fantastic 16 week anniversary. I am still going strong. I ran out of Advair this morning and just went to get some more and didn't wear my O2 in to the pharmacy. I was so proud. I didn't need to rush home and take some. I will get around to it in a little bit. I should have said I ran out of Advair last night. I have had none today. What more can I say? I never thought I would be so excited about making reports on breathing, but when you have had to struggle for years and then you have a day like today happen, it is not even something I can begin to describe. Those little stem cells are working overtime I think. I have been paying them well. I stick to the stem cell diet and tonight I had broccoli, tofu in peanut sauce and brown rice. Those little guys should appreciate that! Happy Anniversary Jeannine.
seven weeks and going(sounds like the energizer bunny)
I am doing good. Like you all have said in the past, " one good day, two yuckies", It would seem I am starting to get more good than yuk. One of the things that is surprising me is that the spots of dark skin on my arms is starting to lighten up and in some instances have gone completely. I am sure that I made the right choice in opting for the treatment. I am sure I will follow not to far behind my great leaders, as I am less SOB and have reduced my nebulizing to half of what I was doing. Actually I am so confident about the future I just purchased a new home with a staircase, which is something I never dreamed I would do. Hope everyone is healthy. Nelson
I am doing good. Like you all have said in the past, " one good day, two yuckies", It would seem I am starting to get more good than yuk. One of the things that is surprising me is that the spots of dark skin on my arms is starting to lighten up and in some instances have gone completely. I am sure that I made the right choice in opting for the treatment. I am sure I will follow not to far behind my great leaders, as I am less SOB and have reduced my nebulizing to half of what I was doing. Actually I am so confident about the future I just purchased a new home with a staircase, which is something I never dreamed I would do. Hope everyone is healthy. Nelson
I'm a day later than Barb posting for our 16-week anniversay.
Here's my current progress.
Inhaler use:
pre stem cells 2 puffs 4 times per day
post stem cell 2 puffs 2-3 times per week
Shortness of breath
pre-stem cells: anytime I walked more than 50 feet
post stem cells: hardly at all unless I walk for longer than 10 minutes. Even climbing stairs isn't much of a problem anymore.
O2 use:
pre stem cells: 2LPM sitting and sleeping 3LPM walking
post stem cells: 1LPM sitting (and not always needed) can often maintain between 93-95% Saturation for 4-5 hours.
Still need O2 set at 3LPM for walking.
Happy Anniversary Barb!
Nelson - Sounds like you're making great progress. This makes all of the grief we've received worthwhile to know others are benefiting as well.
Here's my current progress.
Inhaler use:
pre stem cells 2 puffs 4 times per day
post stem cell 2 puffs 2-3 times per week
Shortness of breath
pre-stem cells: anytime I walked more than 50 feet
post stem cells: hardly at all unless I walk for longer than 10 minutes. Even climbing stairs isn't much of a problem anymore.
O2 use:
pre stem cells: 2LPM sitting and sleeping 3LPM walking
post stem cells: 1LPM sitting (and not always needed) can often maintain between 93-95% Saturation for 4-5 hours.
Still need O2 set at 3LPM for walking.
Happy Anniversary Barb!
Nelson - Sounds like you're making great progress. This makes all of the grief we've received worthwhile to know others are benefiting as well.
17 week anniversary
Today is my 17 week anniversary and Jeannine's. Happy anniversary Jeannine. I have had an awesome week in that everyday I have been able to go without any O2 for up to several hours at a time without desaturating. I no longer use O2 at any meal. Not only is the nose hose starting to drive me nuts, but it is a good indicator of the times when I don't need the O2. It actually lets me know by making me aware of it intensely and then I rip it off and check my sats and they have gone up to 94-95 which is real good for me. I leave it off until I feel like I need it again. I do keep checking my oximeter because I am not used to this. It feels strange to carry my portable O2 somewhere and not be using it. I am not ready to chance not taking it because you never know what will happen on this wild ride, but this is very encouraging to me. I have used very little O2 out of my tank this week. I look back and remember when I needed to order every week plus I was staying home a lot using the concentrator. Now the concentrator is being silenced too. One thing that I am easily able to do now is if I feel like I am desaturating a bit on exertion during these "awesome" periods, I just stop for 10 seconds (don't need much more) and do some deep breathing (2 good ones will usually do) and I am ready to go again without needing to sit down and put the nose hose back on to get my sats up. Mary Jo is next to go (sounds like a chant or something). We will all be cheering for you Mary Jo.
Today is my 17 week anniversary and Jeannine's. Happy anniversary Jeannine. I have had an awesome week in that everyday I have been able to go without any O2 for up to several hours at a time without desaturating. I no longer use O2 at any meal. Not only is the nose hose starting to drive me nuts, but it is a good indicator of the times when I don't need the O2. It actually lets me know by making me aware of it intensely and then I rip it off and check my sats and they have gone up to 94-95 which is real good for me. I leave it off until I feel like I need it again. I do keep checking my oximeter because I am not used to this. It feels strange to carry my portable O2 somewhere and not be using it. I am not ready to chance not taking it because you never know what will happen on this wild ride, but this is very encouraging to me. I have used very little O2 out of my tank this week. I look back and remember when I needed to order every week plus I was staying home a lot using the concentrator. Now the concentrator is being silenced too. One thing that I am easily able to do now is if I feel like I am desaturating a bit on exertion during these "awesome" periods, I just stop for 10 seconds (don't need much more) and do some deep breathing (2 good ones will usually do) and I am ready to go again without needing to sit down and put the nose hose back on to get my sats up. Mary Jo is next to go (sounds like a chant or something). We will all be cheering for you Mary Jo.
Jeannine's 17-week anniversary
Hi everyone - Happy anniversary Barb
Seeing that Barb has provided a 17 week update I guess I will too.
I have noticed many changes this week. Saturday was able to go all day without O2 . My sons were amazed to see my walking around in the house without O2.
Sunday was a good day too until I decided to split a beer with my husband while I watched him paint the front porch. The alcohol didn't agree with my breathing and I become so SOB climbing the stairs that it reminded me of how bad I used to be. Guess I won't be boozing it up again anytime soon.
Monday I only used my O2 for 2 hours other than for sleeping. I simply don't need it. My liquid O2 used to delivered every 3 weeks (even then I would sometimes run out before they came). They are now coming once a month and who knows? I might be able to stretch that out soon.
Tuesday & Wednesday were a step back and I needed the O2 more often.
So far today, I'm doing great without it. Who knows what tomorrow holds.
I continue to improve and that's what counts.
Jeannine
Hi everyone - Happy anniversary Barb
Seeing that Barb has provided a 17 week update I guess I will too.
I have noticed many changes this week. Saturday was able to go all day without O2 . My sons were amazed to see my walking around in the house without O2.
Sunday was a good day too until I decided to split a beer with my husband while I watched him paint the front porch. The alcohol didn't agree with my breathing and I become so SOB climbing the stairs that it reminded me of how bad I used to be. Guess I won't be boozing it up again anytime soon.
Monday I only used my O2 for 2 hours other than for sleeping. I simply don't need it. My liquid O2 used to delivered every 3 weeks (even then I would sometimes run out before they came). They are now coming once a month and who knows? I might be able to stretch that out soon.
Tuesday & Wednesday were a step back and I needed the O2 more often.
So far today, I'm doing great without it. Who knows what tomorrow holds.
I continue to improve and that's what counts.
Jeannine
19th week update
Hi everyone - Happy 19th Anniversary Barb!
I have finally turned the corner. I am only using my O2 when climbing stairs, showering and walking long distances. My O2 is staying between 94-96% without O2 when sitting, and walking around my home and office.
I took my sons shopping for school clothes on Wednesday evening and noticed I didn't even need my O2. So I took it off and walked around the store without it for about 10 minutes. My O2 was at 91% at that time and it made me nervous so I put it back on. I lack the confidence right now and rely on my O2 like a baby who needs a security blanket. I hardly get short of breath either. I would say it might happen once a day if I am doing something like cleaning cat vomit from my dining room rug and dining room chair after working all day.
I am using my Microlife Peak Flow Meter to measure my changes too. When I started using it I was getting and FEV1 of .53 (I am now at .71) and a PEF of 78 (I am now at 99). All I can tell you is I feel better than I have in several years. I continue to take the supplements, use my Power Lung and I take Advair and Spiriva daily. I use my Xoponex inhaler as needed which is once or twice a week.
In December 2005 I thought I had about 3 years left to live so I went to Boston in August 2006 to be considered for LVRS or a Transplant. I did qualify but something kept nagging at me not to have surgery.
And then I heard about Nassin in January 2007 - the rest is history!
Thank you Nassin - and I hope you're doing well.
I continue to improve and that's what counts. Dr F told me that it could take more than 6 months to see noticeable results. I would have to say that the MOST IMPORTANT THING TO IS BE PATIENT.
Jeannine
Hi everyone - Happy 19th Anniversary Barb!
I have finally turned the corner. I am only using my O2 when climbing stairs, showering and walking long distances. My O2 is staying between 94-96% without O2 when sitting, and walking around my home and office.
I took my sons shopping for school clothes on Wednesday evening and noticed I didn't even need my O2. So I took it off and walked around the store without it for about 10 minutes. My O2 was at 91% at that time and it made me nervous so I put it back on. I lack the confidence right now and rely on my O2 like a baby who needs a security blanket. I hardly get short of breath either. I would say it might happen once a day if I am doing something like cleaning cat vomit from my dining room rug and dining room chair after working all day.
I am using my Microlife Peak Flow Meter to measure my changes too. When I started using it I was getting and FEV1 of .53 (I am now at .71) and a PEF of 78 (I am now at 99). All I can tell you is I feel better than I have in several years. I continue to take the supplements, use my Power Lung and I take Advair and Spiriva daily. I use my Xoponex inhaler as needed which is once or twice a week.
In December 2005 I thought I had about 3 years left to live so I went to Boston in August 2006 to be considered for LVRS or a Transplant. I did qualify but something kept nagging at me not to have surgery.
And then I heard about Nassin in January 2007 - the rest is history!
Thank you Nassin - and I hope you're doing well.
I continue to improve and that's what counts. Dr F told me that it could take more than 6 months to see noticeable results. I would have to say that the MOST IMPORTANT THING TO IS BE PATIENT.
Jeannine
Number 19 is very, very good
Happy 19th week anniversary to you too Jeannine. I am really ecstatic to hear that you are flouncing around practically naked (this means no nose hose, so don't anyone think differently HA). I had a couple of so so days on Thursday and Friday, but today I am back in the running. I went to the grocery store (I hate shopping and always have) and bought a lot of stuff. I got home, hauled 90 pounds of kitty litter (take note Bev) upstairs and unloaded some real heavy bags from the car and made several more trips upstairs (5 total) and I feel absolutely fine. No SOB, no problems. The stairs used to be my worst enemy. I am not using much O2 at all today although I did use it when hauling all the groceries. I was reminded by someone that one thing people with COPD do is try to avoid anything that causes that SOB feeling. An extra step or trip to the car is almost overwhelming in many instances. A lot of time is spent thinking of ways to save yourself from doing any extra exerting. I just hadn't noticed I guess that in losing my SOB, I don't even think about any of that any more. I just go for it because I can. One thing I do think about constantly is why this country's politicians and insurance companies are willing to spend hundreds of thousands of dollars on transplants and other invasive surgeries and yet are ignoring this very simple treatment that is saving lives. This has got to change. Everyone deserves to be looking forward to feeling even better next week.
Happy 19th week anniversary to you too Jeannine. I am really ecstatic to hear that you are flouncing around practically naked (this means no nose hose, so don't anyone think differently HA). I had a couple of so so days on Thursday and Friday, but today I am back in the running. I went to the grocery store (I hate shopping and always have) and bought a lot of stuff. I got home, hauled 90 pounds of kitty litter (take note Bev) upstairs and unloaded some real heavy bags from the car and made several more trips upstairs (5 total) and I feel absolutely fine. No SOB, no problems. The stairs used to be my worst enemy. I am not using much O2 at all today although I did use it when hauling all the groceries. I was reminded by someone that one thing people with COPD do is try to avoid anything that causes that SOB feeling. An extra step or trip to the car is almost overwhelming in many instances. A lot of time is spent thinking of ways to save yourself from doing any extra exerting. I just hadn't noticed I guess that in losing my SOB, I don't even think about any of that any more. I just go for it because I can. One thing I do think about constantly is why this country's politicians and insurance companies are willing to spend hundreds of thousands of dollars on transplants and other invasive surgeries and yet are ignoring this very simple treatment that is saving lives. This has got to change. Everyone deserves to be looking forward to feeling even better next week.
Happy 20th week anniversary Jeannine
I thought week 19 was good, well week 20 was outstanding. I spent most of my birthday without O2 (August 21 - all make note of this so you can send me greetings next year HAHA), the next day was just as good and today WOW is all I can say. I just went to dinner and was at 93-94 all through the meal with no O2. I usually can only muster up 89-91. I ate like a horse and still no problem. It is so fun to watch this happen. My heart rate was at 65. I was given a spa giftcard for my birthday and tomorrow I have booked an hour long facial (the one for old bags that they really have to work on) at this spa. I can't tell you how much it means to know that tomorrow I can go and have an hour long facial knowing I will not need my nose hose. I would never have been able to get a facial wearing O2 even if the spa had been willing to try. I just wouldn't have wanted to. When I booked the facial, I thought of Bev wanting to be able to bend over and shave her legs. I don't know why I thought of that, but I did. In my mind, I saw Bev screaming at her husband to come into the bathroom and he rushes in all worried and she just wants to tell him she can bend over and shave her legs! You really have to have COPD to understand this. Anyway, I will be laying down (that's another reason I couldn't have done this before my stem cell treatment) for one luxurious hour tomorrow. I am sure they will suggest I come in often to deal with my mug and I just might do that. Happy Anniversary Jeannine. May next week be even better.
I thought week 19 was good, well week 20 was outstanding. I spent most of my birthday without O2 (August 21 - all make note of this so you can send me greetings next year HAHA), the next day was just as good and today WOW is all I can say. I just went to dinner and was at 93-94 all through the meal with no O2. I usually can only muster up 89-91. I ate like a horse and still no problem. It is so fun to watch this happen. My heart rate was at 65. I was given a spa giftcard for my birthday and tomorrow I have booked an hour long facial (the one for old bags that they really have to work on) at this spa. I can't tell you how much it means to know that tomorrow I can go and have an hour long facial knowing I will not need my nose hose. I would never have been able to get a facial wearing O2 even if the spa had been willing to try. I just wouldn't have wanted to. When I booked the facial, I thought of Bev wanting to be able to bend over and shave her legs. I don't know why I thought of that, but I did. In my mind, I saw Bev screaming at her husband to come into the bathroom and he rushes in all worried and she just wants to tell him she can bend over and shave her legs! You really have to have COPD to understand this. Anyway, I will be laying down (that's another reason I couldn't have done this before my stem cell treatment) for one luxurious hour tomorrow. I am sure they will suggest I come in often to deal with my mug and I just might do that. Happy Anniversary Jeannine. May next week be even better.