I am so happy that this transplant made you feel so much better. Lucky you.
@user-eg7ig9to8f8 ай бұрын
Hi listened to your story. I'm also diagnosed the same and 24/ on medical oxygen
@amypeterson86159 ай бұрын
My friend Ken Widner had a double lung about one week ago. I’m praying he pulls through this setback
@amypeterson86159 ай бұрын
Kenny was moved back to ICU this morning. He appears to have an infection causing some delirium. We’re waiting on blood cultures to know the most appropriate antibiotics to give. Please pray for him to jump this hurdle and be back in the road to recovery quickly.
@BarbraMyPHCOPDLife9 ай бұрын
I'm sorry to hear that. Hopefully they will get everything figured out. He will be in my thoughts. Please keep me posted & I wish him well.
@amypeterson86159 ай бұрын
How common is pleurisy in end stage Copd? Hubby has it again. Also my friend Ken Widner just had his double lung transplant a couple days ago. He’s already walked a little way. But he’s in severe pain. They said his new lungs are expanding causing pain from spinal nerves. I’ve never heard this from others.
@BarbraMyPHCOPDLife9 ай бұрын
Hi Amy! First congrats to your friend on his new lung transplant. For him I would say that it is a very serious surgery that does affect many nerves in the body. The Doctors usually will keep new transplant patients on Gabapentin (a nerve Pain drug) until the pain finally resolves. I should also note that it may take a year or even two years for your body to recover from all the feelings that go with this surgery and it's only been a couple of days so he's got a ways to go. If he's already walking after only a couple of days, he's doing great. Tell him to hang in there, and that movement is his friend. As for your hubby, I think that Pleurisy may be at least somewhat common in late stage COPD. The reason I say that is because Pleurisy itself is caused by inflammation in the lung tissue which would be quite possible with late or end stage COPD. As a precaution though, I would always check with his Doctor and ask for tests to be done to be sure that it is not an infection or virus that is causing it as these are the most common causes of Pleurisy and you want to be sure it is not one of the later. Good luck with your Hubby and let me know friend progresses.
@Peggy-pl6jn10 ай бұрын
Hi Barbra what company are the pill containers from? So glad all is good so well for you.
@BarbraMyPHCOPDLife9 ай бұрын
Hi Peggy! My favorite comes from Amazon and is the ''XL Pill Organizer 4 Times a Day, BUG HULL" and they are $15.99 each.
@just.879710 ай бұрын
You look too young for COPD. Did you smoke? Live with a smoker? No hate, I know sometimes it can just happen too. How long have you had it? And is it progressing or pretty stagnant right now?
@BarbraMyPHCOPDLife10 ай бұрын
Hi … I am almost 60 (not quite there yet) so I guess that could be considered young for COPD, but I also had PAH which with both of them together was very taxing on my lungs. And yes I am an ex smoker. I no longer have COPD or PAH as I had a lung transplant which eliminated both of those issues and at this point I am doing very well. My videos start with number 1 and you can learn about my entire story and get more info by starting from the beginning … that would probably answer all of your questions ☺️
@sandrasinclair0110 ай бұрын
can I ask how many pills all total a day ?
@BarbraMyPHCOPDLife10 ай бұрын
I counted after you asked and it is 20 transplant related meds per day and 9 vitamins per day, I should also note that that is the number of pills total - but that does not mean 29 different kinds ... some pills I may take 4 of the same per day so I was counting each individual pill, not each kind. I hope that answers your question :)
@Peggy-pl6jn10 ай бұрын
So do you basically take all your morning pill’s together (along with the timed pills) and take the evening ones together ( along with the time pills? For example 8:00am and then 8:00pm. P.S. still waiting for my call….
@BarbraMyPHCOPDLife10 ай бұрын
Hi Peggy … yes that’s exactly what I do except my times are 10 and 10, I wanted to be able to sleep in sometimes if I wanted lol. Hopefully you get your call soon 😊
@sylviaklumpp491211 ай бұрын
Schön dich zu sehen, ich warte noch auf den Anruf,seit 13monaten.lg von Baden Baden Germany, Sylvia
@TamaraJohnBlue11 ай бұрын
So happy for you that you feel amazing. What a fantastic outcome. I can’t fathom that amount of steps anymore, or if ever😅. I’m barely able to get to 1500 per day, lately a whole lot fewer. I keep trying. Thanks for sharing your good news!
@BarbraMyPHCOPDLife11 ай бұрын
Keep going, keep trying ... you just never know what may happen next ;)
@TamaraJohnBlue4 ай бұрын
@@BarbraMyPHCOPDLife. Please post an update. Ok?
@dickmeisterling392411 ай бұрын
Very, very helpful. Many thanks.
@amypeterson8615 Жыл бұрын
Have you been checked for valley fever or cocci……infections from dust? A friend has both. He just found out as the tests for being placed on the list were done. Since you go to horse shows. And live on a farm. Just a thought.
@BarbraMyPHCOPDLife Жыл бұрын
Hi Amy ... the doctors have informed me of Valley Fever, however it is not found in the Midwest which is where I am. It is a fungus that grows in the Southwestern states. Definitely would be a concern if I was in those areas.
@TamaraJohnBlue Жыл бұрын
Very good information. Thank you for this.
@phoenixflying2191 Жыл бұрын
Thank you for sharing information with us 💜
@phoenixflying2191 Жыл бұрын
I’m glad to see you again, and happy to know you’re doing well, even with bumps in the road 😊 Thank you for sharing an update with us ❤
@charlenewheeler3002 Жыл бұрын
You look great!! so happy all is going well for you
@TamaraJohnBlue Жыл бұрын
CMV?
@BarbraMyPHCOPDLife Жыл бұрын
Pretty common virus that is carried by a high percentage of the population (similar to the chicken pox virus). For this many people acquire it in preschools or daycares and then carry. it throughout their life. For most people it does not affect them, but it is opportunistic and can cause problems in newly pregnant woman or people with compromised immune systems.
@sylviaklumpp4912 Жыл бұрын
Viele Grüße von Baden Baden Germany. Ich warte immer noch auf den Anruf. Scheiss copd,
@bquade70 Жыл бұрын
Good to see your doing so well, been a while. Lake Havasu 🌞 Az
@krisztina-gv9oq Жыл бұрын
❤
@cindybain6054 Жыл бұрын
I've been diagnosed with asthma and bronchitis and emphysema and COPD It has caused me not to be able to work
@BarbraMyPHCOPDLife Жыл бұрын
Yes I definitely understand, not being able to breathe normally affects every area of life. Stay as active as you can even if it is difficult, activity is so very important. I wish you well.
@angelaanderson5360 Жыл бұрын
I just discovered your video. Very comprehensive video. Thank you. I have just discovered another canula that only hooks to one ear. I am going to see after the cost. I don't know if the insurance will pay. Thank you for a very informative video.
@Michael_1946 Жыл бұрын
Hi Barbara, I see that you made this video quite a while back. I hope that you're doing well. Your message in the video is VERY good.
@BarbraMyPHCOPDLife Жыл бұрын
Hi Michael. Thank you for watching and commenting. I always love to hear that a video or videos have helped someone. Be sure to check out my most recent videos from after transplant, or even watch from beginning to current starting with video 1 to ???. I believe there's a lot of good info to be found, along with some ups and downs.
@phoenixflying2191 Жыл бұрын
Hi Barbara, I hope you’re doing well. You’ve always inspired me. I’ve been watching your videos for years now. I found you after my diagnosis and you helped me learn things and not feel alone in this. Thank you for sharing your journey with others. It really does mean so much 🩵
@BarbraMyPHCOPDLife Жыл бұрын
Thank you so much! I love hearing that the videos help, that's exactly what I wanted them to do - help others. I hope you are doing well. I will be working on getting another video posted soon to update everyone on how things are going. Take care and thanks for writing 🙂
@user-jo8yr1zo9k Жыл бұрын
i think you can get high on O2
@user-jo8yr1zo9k Жыл бұрын
Crack cures every thing! just kidding
@Peggy-pl6jn Жыл бұрын
Hi. I've been following your journey from the beginning. So glad you are doing well and sharing the ups and downs. I was listed Feb 14, 2023 and waiting patiently for the call. Your journey is what inspired me to go through the evaluaton process. You are right it is a long and often difficult process often with doubt and wondering if its "worth" it. Your videos are what kept me going forward. Thank you for that. Peggy
@BarbraMyPHCOPDLife Жыл бұрын
Hi Peggy, I just wanted to check in with you and see how your journey is going. Hoping all is well with you. It's been a couple of months now, any progress or encouraging news?
@Peggy-pl6jn Жыл бұрын
Hi. Still waiting patiently for my “call.” Learning a lot from you so appreciate you sharing and letting us know about the ups and downs. Thank you for checking in. Peggy
@johnmichaeltracy9050 Жыл бұрын
barbra, im glad to see you doing well, im three months out of my double lung transplant and wow, what a difference. loving and living life again. keep enjoying your gift.
@BarbraMyPHCOPDLife Жыл бұрын
Oh My Gosh John!!! That's Amazing!!! So happy for you, wow! And it an incredible gift isn't it - to actually really be able to live again, I am thankful beyond words everyday. I would love to hear more about your journey ... how your evaluation process went, how your surgery went, and how your recovery is going. Congratulations and stay well, also keep in touch please 🥰
@TamaraJohnBlue Жыл бұрын
So glad to see you! I needed a smile.
@pandemicpat8382 Жыл бұрын
So good to hear from you. This is a great update and good information for others. I'm still working on getting zephyr valves but since I started pulmonary rehab last November I feel like I may not qualify as I'm doing so well. I'm not sure what they are thinking. My lung fev1 is still 38 and I'm still very hyperinflated. I'll know soon though. They may want me to wait for awhile. 😊
@BarbraMyPHCOPDLife Жыл бұрын
PandemicPat it is good to hear from you too! I'm glad to hear that you are doing better, and sounds like rehab is getting you a little stronger! That's great ... not qualifying because you're doing to well is a good thing! Exercise can really make a difference even if it's only a little bit. Take care and keep in touch!
@marykelly9698 Жыл бұрын
Don't sit and dwell on this diagnosis of copd , my aunt lived still smoking for 16yrs after her diagnosis,, my father had it for 20yrs still smoked until 5 weeks before he died , please take your meds eat healthy get excerize.and live everyday as if its your last that's what I do , diagnosed 3yrs on oxegen 1 and half years ,,, as the doctor told me most people give up when they hear of thier diagnosis and take to the bed and others go on as if it's not happening,, take your time and enjoy life to the best you can , I stay away from volgs of people with copd because you can get caught up in the trap of depression and if something is happening to another person it may never happen to you ,, my father did not die of copd having it for 20 yrs ,
@BarbraMyPHCOPDLife Жыл бұрын
Hi Mary, I see from your response that you have only watched maybe one of my 140 something videos lol. I have never been and never will be the type of person to "sit and dwell" ... in addition just for informational purposes copd and ph are 2 very different diagnosis. I thrived for approximately 9 years even after my diagnosis because I ate healthy, stayed active, and quite smoking long before that. 7 of those 9 years was active on oxygen, and I stayed that way until my lung function was at 17% ... most people by 17% are not even moving around anymore. My determination kept me going and happy for the majority of that time, also helping others to stay active and moving and to never give up because amazing things can & do happen. I am now in my 2 year after a double lung transplant and am doing amazingly. I average 15,000 - 20,000 steps minimum every day wiith ease. My condition before transplant allowed me a fast and easy recovery after getting over a few bumps. Thanks for the advice ... I hope you will tune in to a few more vids so can get to know the real me, and catch some of tips I learned while on oxygen that make life so much easier. Also maybe tune in to the last few vids to see life as it is now. Good luck on your journey.
@SonkleyFiz Жыл бұрын
hello, so i believe that im actually on the path of being diagnosed with copd, im constantly in mental turmoil because i just cant believe this is happening to me, also because i have trouble breathinh everyday, im not up to the point where i may need a double lung transplant, but just the thought scares me, this is probably weird to hear from a stranger, but is there any way you and me can chat over google meet or the phone, i just dont know who to turn to anymore, i need help, because right now, i see nothing but darkness in my future, i dont know where to go from here =( can you possibly provide an email in which i can contact you through and we can exchange phone numbers?
@BarbraMyPHCOPDLife Жыл бұрын
Have you watched my beginning videos? I think they may help a lot. I was where you are at and my videos go through a lot of what you are feeling. The videos start with number 1 and go from there in order. My email is [email protected]
@amypeterson8615 Жыл бұрын
Well the hubby getting on oxygen wasn’t a big deal at all. The last 16 years of going through this alpha one antitrypsin journey with my hubby of 38 yrs has been so harsh on my nervous system. It’s the way I’m wired. It didn’t help when a pulmonologist at diagnosis said he’d be dead in 18 months. I nearly fainted in her office. She was young and new. Dr Carolina See. She clearly did not know the alpha 1 genetic condition at all. Also, I’m now 66. My mom 86, has lived with me for 23 yrs. She is bad. In a hospital bed and wheel chair. Speaking from the caregiver side I feel ptsd. I’m trying to financially hold all things together. This alpha 1 is incredibly costly. Just wanted you to roll it around in your mind our scenario. That not everyone is stable as a rock emotionally. I raised 8 kids, now adults. I have 18 grands. This Covid has changed our social life drastically. Hubby will get a new pft any day. My guess is his fev1 will be around 19%. I’m freaked out daily I will find mom or hubby deceased.
@BarbraMyPHCOPDLife Жыл бұрын
I definitely understand everyones' situation is different and that we are not all wired the same. It does also sound like you have been through a lot, and of course this whole covid thing hasn't made life easier for anyone ... has def changed life for sure and not in a good way. Also 19% is tough ... I was at 17% when I got my lung transplant. Hopefully he's doing better now with the oxygen. I wish you the best on your journey.
@johnrandle8365 Жыл бұрын
You can be scared of the unknown I have a canula most of the day with pneumonitis fibrosis it's when you have a faith it can give you a hope along with the illness even job in the scriptures hopes to live again?
@davidhounslow7845 Жыл бұрын
Your a brave woman, who knew something was'nt right. You persisted and suceeded in getting the action which was required. Hope things are still going OK. Cheers
@amypeterson8615 Жыл бұрын
Barbra today my husband got the call his oxygen use was authorized. 2 lpm They are coming for the first visit this Friday. I’m feeling very anxious and overwhelmed. It feels like a house invasion sadly. What can I expect? They said one month supply? My house is small. Am I to store giant green tanks everywhere? I just am so done with this illness. This sounds horrible but I have th nervous system to deal with this like others might. It would help if I knew what to expect on this first visit. You’ve always seemed in control. I’m frail and an emotional mess.
@TamaraJohnBlue Жыл бұрын
Wow. I get exhausted just going to one store, let alone 12. Lol. You are amazing.
@pandemicpat8382 Жыл бұрын
Happy New Year! We're doing our celebrations in January. We are doing well. Some fatigue hanging on but it was a fun New Year. 🥂
@janicewilliams2194 Жыл бұрын
So happy I feel for you I wish you much happiness as you have so earned it. Have fun. enjoy your life and your family. Be sure and rest. Merty Chtistmas 2022 Happy New Year 2023 ▪☆▪☆▪☆▪☆▪☆▪☆▪
@naturalthing1 Жыл бұрын
Happy New Year!
@phoenixflying2191 Жыл бұрын
Happy New Year!! 🎉❤💙 🤗
@karenmikasko7148 Жыл бұрын
Merry Christmas to you and congratulations on 2 years of new lungs.
@joybrooks564 Жыл бұрын
I’m glad you’re doing well
@charlessmarr7107 Жыл бұрын
I cannot express how happy it makes me to see you doing so well! 5 years ! May you and yours have a Joyous Holiday Season!
@bquade70 Жыл бұрын
Wow that's amazing so happy for ya! I'm still figuring out out. 👍👍 Lake Havasu 🌞 Az