I have had several people ask me if I felt that stem cell therapy has halted the progression of the disease for me and for others. Since, there is still no long term data available, the best answer I can give, is that YES, in my opinion it does halt or slow the progression of the disease. How do I know? For me, it is the simple fact that this is the first year in over ten years that I have not observed any deterioration in my condition. Every year, I just kept getting worse and not being able to do things like I used to do. I ask myself when was it I could no longer do X and it becomes a blur over the years. This year, I am now asking myself when was it I noticed I could do X again? This means that I am now inching forward, not backward. I have no scientific evidence to prove any of this. I only have my own sense of change that has occurred. I think there is still much more work to be done and that the future holds great promise for improved therapy and the knowledge that so many are seeking. I will continue to do my best to report on this forum and to ask others to do so also.
Halting the progression of COPD
- Thread starter barbara
- Start date
karl wagner
New member
barbara
what does the doctor say ? any hard facts,test results
what does the doctor say ? any hard facts,test results
Test reports anyone?
Nassin had his FEV1 go from 11% to 17% on his first check up. Other members have been to their pulmos as you can read on the various update threads and posted different things. Most have reported that their doctors said their lungs were clear. I don't know that anyone has done any extensive testing because it is too soon for many (remember, this is not an overnight fix by any means) and for some, like me, I do not feel the urge to run off to my pulmo and expose myself to some ghastly bug this time of year while I sit in his waiting room with some very sick people just to satisfy myself. I know how I feel. I would hope others will post on here for you especially if they have had any testing done.
Nassin had his FEV1 go from 11% to 17% on his first check up. Other members have been to their pulmos as you can read on the various update threads and posted different things. Most have reported that their doctors said their lungs were clear. I don't know that anyone has done any extensive testing because it is too soon for many (remember, this is not an overnight fix by any means) and for some, like me, I do not feel the urge to run off to my pulmo and expose myself to some ghastly bug this time of year while I sit in his waiting room with some very sick people just to satisfy myself. I know how I feel. I would hope others will post on here for you especially if they have had any testing done.
Tests
I Just Composed A Long Answer To This Thread, That I Lost, Because I Took So Long, So I Am Back---
I Had A Pretest For Pulmo Rehab Before Having Stem Cell Treatment, I Also Had A Chest Xray, And Some Blood Work Done---upon Completing The Pulmo Rehab, I Had To Have A Post Rehab Test, Which Showed That I Had Improved 100%--the Head Of Resperatory Therapy Of Our Hospital Was The Class Instructor. She Told My Hubby, And Myself, That Before The Treatment, My Lungs Were Wheezy And Crackly, And Not Much Air Movement. After The Cells The Lungs Began To Quiet Down, And She Could Hear More Air Moving Around. She Is Convinced That The Stem Cell Trtmnt Had A Great Deal To Do With My Improvement, Yes The Rehab Helped, But Without The Cells I Would Not Have Improved As Much As I Did. I Worked At This Hospital, So The R Therapist Has Known Me Since Before I Got Sick. She Would Never Tell Me She Thought The Cells Were Working If, She Didn't Beleive It. It Has Only Been 3 Month 3 Weeks, So I Won't Be Having Any Xrays, Etc. As I Do Not Want To Take A Chance On Hurting The Stem Cells, In Time, When I Feel It Is Safe, I Will Have It Done.
I Am Now Able To Shower With Out Gasping For Air, Before It Was Very Difficult And I Literally Would Gasp For Air After The Shower.
Yesterday, I Made 3 Trips Up And Down My Basement Stairs, Without Sob--2 Trips Up And Down My Upstairs Without Sob, Before Treatment I Would Not Have Been Able To Do This.
I Am So Glad I Had This Treatment, And I Would Do It Again. I Know I Will See More Improvement As Time Goes By--my Long Term Goal, Is To Get Off The 02, And Hopefully Most Of My Meds---
I Just Composed A Long Answer To This Thread, That I Lost, Because I Took So Long, So I Am Back---
I Had A Pretest For Pulmo Rehab Before Having Stem Cell Treatment, I Also Had A Chest Xray, And Some Blood Work Done---upon Completing The Pulmo Rehab, I Had To Have A Post Rehab Test, Which Showed That I Had Improved 100%--the Head Of Resperatory Therapy Of Our Hospital Was The Class Instructor. She Told My Hubby, And Myself, That Before The Treatment, My Lungs Were Wheezy And Crackly, And Not Much Air Movement. After The Cells The Lungs Began To Quiet Down, And She Could Hear More Air Moving Around. She Is Convinced That The Stem Cell Trtmnt Had A Great Deal To Do With My Improvement, Yes The Rehab Helped, But Without The Cells I Would Not Have Improved As Much As I Did. I Worked At This Hospital, So The R Therapist Has Known Me Since Before I Got Sick. She Would Never Tell Me She Thought The Cells Were Working If, She Didn't Beleive It. It Has Only Been 3 Month 3 Weeks, So I Won't Be Having Any Xrays, Etc. As I Do Not Want To Take A Chance On Hurting The Stem Cells, In Time, When I Feel It Is Safe, I Will Have It Done.
I Am Now Able To Shower With Out Gasping For Air, Before It Was Very Difficult And I Literally Would Gasp For Air After The Shower.
Yesterday, I Made 3 Trips Up And Down My Basement Stairs, Without Sob--2 Trips Up And Down My Upstairs Without Sob, Before Treatment I Would Not Have Been Able To Do This.
I Am So Glad I Had This Treatment, And I Would Do It Again. I Know I Will See More Improvement As Time Goes By--my Long Term Goal, Is To Get Off The 02, And Hopefully Most Of My Meds---
Rose
The comments from your pulmo rehab instructor are very similar to the comments made my my pulmonary doctor and my primary care physician. both were surprised at the sound of my lungs. They have asked me to go for a PFT but we've had so many crisis in my family with my Mom and Dad lately that I had to cancel it twice. Right now my Mom is staying with me after open heart surgery so I can't have anything done for awhile.
My personal observations based on my peak flow meters (I have one that measured peak flow only and another that tells me my FEV1.)
Pre stem cells Post stem cells
maximum peak flow = 60 170
FEV1 = .54 .72 (as of Nov 2007 - 7 month post stem cells)
oxygen 2.5/3 LPM 24/7 2LPM for sleeping and walking more than 1000 feet
The comments from your pulmo rehab instructor are very similar to the comments made my my pulmonary doctor and my primary care physician. both were surprised at the sound of my lungs. They have asked me to go for a PFT but we've had so many crisis in my family with my Mom and Dad lately that I had to cancel it twice. Right now my Mom is staying with me after open heart surgery so I can't have anything done for awhile.
My personal observations based on my peak flow meters (I have one that measured peak flow only and another that tells me my FEV1.)
Pre stem cells Post stem cells
maximum peak flow = 60 170
FEV1 = .54 .72 (as of Nov 2007 - 7 month post stem cells)
oxygen 2.5/3 LPM 24/7 2LPM for sleeping and walking more than 1000 feet
Jeannine
I'm So Sorry To Hear About Your Mom, I Hope All Goes Well With Her.
I Haven't Even Seen A Dr. Since I've Been Back, I Will Make An Appt With My Pulmo, In A Bout 3 Months--hopeing For More Improvement Before I Go---my Med. Dr. See's Me Around The Building And Just Keeps Encouraging Me.
Plan To Get Back To The Pulmo Exercise Class,next Week. Had To Take Time Off When The Bad Cold Hit Me.
I'm So Sorry To Hear About Your Mom, I Hope All Goes Well With Her.
I Haven't Even Seen A Dr. Since I've Been Back, I Will Make An Appt With My Pulmo, In A Bout 3 Months--hopeing For More Improvement Before I Go---my Med. Dr. See's Me Around The Building And Just Keeps Encouraging Me.
Plan To Get Back To The Pulmo Exercise Class,next Week. Had To Take Time Off When The Bad Cold Hit Me.
mcfarlane494@btinternet.c
New member
alan scotland
glad to know your getting better!!!!!I Just Composed A Long Answer To This Thread, That I Lost, Because I Took So Long, So I Am Back---
I Had A Pretest For Pulmo Rehab Before Having Stem Cell Treatment, I Also Had A Chest Xray, And Some Blood Work Done---upon Completing The Pulmo Rehab, I Had To Have A Post Rehab Test, Which Showed That I Had Improved 100%--the Head Of Resperatory Therapy Of Our Hospital Was The Class Instructor. She Told My Hubby, And Myself, That Before The Treatment, My Lungs Were Wheezy And Crackly, And Not Much Air Movement. After The Cells The Lungs Began To Quiet Down, And She Could Hear More Air Moving Around. She Is Convinced That The Stem Cell Trtmnt Had A Great Deal To Do With My Improvement, Yes The Rehab Helped, But Without The Cells I Would Not Have Improved As Much As I Did. I Worked At This Hospital, So The R Therapist Has Known Me Since Before I Got Sick. She Would Never Tell Me She Thought The Cells Were Working If, She Didn't Beleive It. It Has Only Been 3 Month 3 Weeks, So I Won't Be Having Any Xrays, Etc. As I Do Not Want To Take A Chance On Hurting The Stem Cells, In Time, When I Feel It Is Safe, I Will Have It Done.
I Am Now Able To Shower With Out Gasping For Air, Before It Was Very Difficult And I Literally Would Gasp For Air After The Shower.
Yesterday, I Made 3 Trips Up And Down My Basement Stairs, Without Sob--2 Trips Up And Down My Upstairs Without Sob, Before Treatment I Would Not Have Been Able To Do This.
I Am So Glad I Had This Treatment, And I Would Do It Again. I Know I Will See More Improvement As Time Goes By--my Long Term Goal, Is To Get Off The 02, And Hopefully Most Of My Meds---