Súper happy to see you’re happy and doing well. I wish my mom could qualify to do her transplant but she has so many complications that it’s very uncertain. I love how organized and dedicated you are with health. God blessed and hope you keep doing well ♥️
Congrats on your new health and freedom! You look fantastic! I am just beginning my journey with O2 therapy and recent PH diagnosis along with COPD. I have learned so much from your videos. Grateful to you and trying to remain positive. 🌻
My alpha1 ZZ alelle hubby fev1 was .97 one year ago. He gets a new PFT next month. This result is after he’s had his meds and inhalers. When he was diagnosed with genetic emphysema back in 2008 it wasn’t until 2010 he had his first PFT. His fev1 before any meds or inhalers at that time was 1.90! His pulmonologist predicted he’d be dead in 18 months. I feel anger at her ignorance to be honest. I’ve had well over a decade to learn how to read a PFT. And probably know as much or more than most pulmonologists about inherited AATD
@@BarbraMyPHCOPDLife Because I’m an anxious person I believe genetically inherited this ridiculous time frame of 18 months left to live, caused me to have a meltdown. I lost so much weight I was down to a size four. And for my height and skeletal structure was alarming! It affected my ability to be the best Mom etc. I spent yrs studying alpha one and emphysema. My hubby has the emphysema structural damage not mucosal as in bronchitis. So his saturation field alveoli is being attacked. In alpha one the lung damage begins at the bottom. This is because the lungs bottom lobes are closer to the liver that isn’t producing the anti inflammatory molecule of anti protease. So when the white cells go into fight infection and foreign particles they act like Pac-Man and keep chewing even good tissue as there isn’t anti protease in the blood tell them when to stop the clean up. As of the past year it seems his fev1 isn’t declining as rapidly as his dlco. Diffusion field. So I’m researching that to understand it better. His first PFT showed a dlco of 92%. Which is good. So there was no cause for alarm as there is now 13 yrs later! May I ask what your dlco got down to? I understand your fev1 was down to 11%. Which is down right low low low. You actuate a strong and inspiring woman! I’ve watched every single video.
hello. im curious as to how severe your copd was and where you were at with being able to get around and function pre transplant. also did you get a zephyr valve installation surgery before having the transplant, and exist with that surgery before making the call to go ahead with a transplant. was this an option for you.
Hi John! All great questions! Unfortunately I did not qualify for the Zephyr Valve because my lung function was to low. In every other way I was a perfect candidate - no leaks, definite target lobe, healthy in all other aspects, but lung function was at 11% which made me too risky. My only option left was transplant. And to answer your other question, yes I was still getting around. I was very fit going in to all of this and continued to push myself with exercise throughout my journey, so I was still getting around - BUT was very slow and very severely out of breath. Also had a very high CO2 level.
@@BarbraMyPHCOPDLife thanks for getting back with me. i am on this journey at this time. my lungs are at maybe 18 percent function. oxy stays about 88 till i start moving then drops quickly causing me to have to move slowly and take breaks alot. very difficult for me due to me being used to being indestructable..... i am almost 55 but did alot of asbestos and chemical work as well as fire damage construction and general construction, usually with no protections. i had 5 zephyr valves placed in left lower 6 days ago. stayed in the hospital for four days after. it seems to be working a bit already with the lung deflating at least a little bit, making it easier for me to bend over forward which a week ago was very trying due to the huge size of my lower left lobe. i am hoping for good results, doc says maximum benefit should be reached by three months but usually about 45 days. a friend of mine just celebrated four years on her double lung transplant, she did the white water rafting on the new river in west virginia. that is quite the routine that you have to follow after your transplant, alot of meds. i dont even take any meds now, just an emergency inhaler and nebulizer 3 times a day. tried some other stuff breo and the like but didnt seem to make a difference. i am hoping all goes well for you.
@@johnmichaeltracy9050 thanks for sharing! I hope the valves continue to help you improve! They are definitely a great option for those who qualify and don't interfere with your transplant options down the road. As for my med routine, once you get used to it, it's not bad at all. I myself always hated nebulizers I think just because the process takes so long, so I would definitely prefer pills over the neb ... but that's just me lol. Well again, good luck with everything and keep me updated on your progress!
Did you lose weight on the feeding tube? If so how much? Currently my BMI is in the “overweight” category…….. I need to lose less than 10lbs to be in normal range. Thanks
They did the feeding tube so that I would gain enough weight to qualify for transplant and to be able to sustain me during my recovery period, so feeding tubes are not normally used to lose weight as far as I know.
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You are looking very good Barbra. Thanks again for sharing🌺
So happy to see you're doing well. What a journey you have been on, enjoy your new life to the fullest, always enjoy your videos.
So happy to see you looking so much better as a IPAHer it can be hard some days but thank God for everything. 🙏🏻💕
Ich freue mich sehr für dich,😀mir steht das gleiche bevor. Hab im Januar voruntersuchungen zur lungentransplantation. Hoffe es klappt alles
Wow you look so good. I'm so happy for you. Amazing. 😊💐🐝👏👏👏👏 Thank you for the update.
Best to u. Happy and healthy new year. U look great!!
Happy to see you looking so well.
Súper happy to see you’re happy and doing well. I wish my mom could qualify to do her transplant but she has so many complications that it’s very uncertain. I love how organized and dedicated you are with health. God blessed and hope you keep doing well ♥️
💞so happy you are doing well and yout transplant was successful. You look healthy and amazing. Thank you for sharing
Congrats on your new health and freedom! You look fantastic! I am just beginning my journey with O2 therapy and recent PH diagnosis along with COPD. I have learned so much from your videos. Grateful to you and trying to remain positive. 🌻
Good luck on your journey
My alpha1 ZZ alelle hubby fev1 was .97 one year ago. He gets a new PFT next month. This result is after he’s had his meds and inhalers. When he was diagnosed with genetic emphysema back in 2008 it wasn’t until 2010 he had his first PFT. His fev1 before any meds or inhalers at that time was 1.90! His pulmonologist predicted he’d be dead in 18 months. I feel anger at her ignorance to be honest. I’ve had well over a decade to learn how to read a PFT. And probably know as much or more than most pulmonologists about inherited AATD
Yes ... I'm not sure why some of the doctors say the things they do. It can be very frustrating.
@@BarbraMyPHCOPDLife Because I’m an anxious person I believe genetically inherited this ridiculous time frame of 18 months left to live, caused me to have a meltdown. I lost so much weight I was down to a size four. And for my height and skeletal structure was alarming! It affected my ability to be the best Mom etc. I spent yrs studying alpha one and emphysema. My hubby has the emphysema structural damage not mucosal as in bronchitis. So his saturation field alveoli is being attacked. In alpha one the lung damage begins at the bottom. This is because the lungs bottom lobes are closer to the liver that isn’t producing the anti inflammatory molecule of anti protease. So when the white cells go into fight infection and foreign particles they act like Pac-Man and keep chewing even good tissue as there isn’t anti protease in the blood tell them when to stop the clean up. As of the past year it seems his fev1 isn’t declining as rapidly as his dlco. Diffusion field. So I’m researching that to understand it better. His first PFT showed a dlco of 92%. Which is good. So there was no cause for alarm as there is now 13 yrs later! May I ask what your dlco got down to? I understand your fev1 was down to 11%. Which is down right low low low. You actuate a strong and inspiring woman! I’ve watched every single video.
hello. im curious as to how severe your copd was and where you were at with being able to get around and function pre transplant. also did you get a zephyr valve installation surgery before having the transplant, and exist with that surgery before making the call to go ahead with a transplant. was this an option for you.
Hi John! All great questions! Unfortunately I did not qualify for the Zephyr Valve because my lung function was to low. In every other way I was a perfect candidate - no leaks, definite target lobe, healthy in all other aspects, but lung function was at 11% which made me too risky. My only option left was transplant. And to answer your other question, yes I was still getting around. I was very fit going in to all of this and continued to push myself with exercise throughout my journey, so I was still getting around - BUT was very slow and very severely out of breath. Also had a very high CO2 level.
@@BarbraMyPHCOPDLife thanks for getting back with me. i am on this journey at this time. my lungs are at maybe 18 percent function. oxy stays about 88 till i start moving then drops quickly causing me to have to move slowly and take breaks alot. very difficult for me due to me being used to being indestructable..... i am almost 55 but did alot of asbestos and chemical work as well as fire damage construction and general construction, usually with no protections. i had 5 zephyr valves placed in left lower 6 days ago. stayed in the hospital for four days after. it seems to be working a bit already with the lung deflating at least a little bit, making it easier for me to bend over forward which a week ago was very trying due to the huge size of my lower left lobe. i am hoping for good results, doc says maximum benefit should be reached by three months but usually about 45 days. a friend of mine just celebrated four years on her double lung transplant, she did the white water rafting on the new river in west virginia. that is quite the routine that you have to follow after your transplant, alot of meds. i dont even take any meds now, just an emergency inhaler and nebulizer 3 times a day. tried some other stuff breo and the like but didnt seem to make a difference. i am hoping all goes well for you.
@@johnmichaeltracy9050 thanks for sharing! I hope the valves continue to help you improve! They are definitely a great option for those who qualify and don't interfere with your transplant options down the road. As for my med routine, once you get used to it, it's not bad at all. I myself always hated nebulizers I think just because the process takes so long, so I would definitely prefer pills over the neb ... but that's just me lol. Well again, good luck with everything and keep me updated on your progress!
Did you lose weight on the feeding tube? If so how much? Currently my BMI is in the “overweight” category…….. I need to lose less than 10lbs to be in normal range. Thanks
They did the feeding tube so that I would gain enough weight to qualify for transplant and to be able to sustain me during my recovery period, so feeding tubes are not normally used to lose weight as far as I know.