Zephyr valve

[Roessner541]

Has anyone heard of this or tried it? It was approved by fda in 2018 and sounds pretty good.

[jillygirl]

Thanks for the info Roessner, certainly worth thinking about.

[Jensmom]

Roessner, hi hope your well so early this morning. Hope it's ok to answer right now. I'm an Insomniac and sleep little. I too have heard a lot about the valves but I've seen no remarks or anything on the patients progress. I'm a little chicken to do it. I'm afraid as bad as my lungs are, I'll get worse. I've been hospitalized 4x in 2yrs. Almost didn't make it each time was worse. In June I went by ambulance with oxygen at 45. I coded 3x they said. But I'm doing good in spite of it all. Its really a choice only you can make for yourself. You know your body better than anyone. Speak with your pulmonologist and research. I hope you find what your looking for. Good luck and let us know if you have it done ok.

Jensmom

[Roessner541 in reply to Jensmom]

Yes I have been through quite a bit but this caught my attention. I spoke with my pulmonologist and my primary care doctor my primary care doctor said that it's new and to talk to my pulmonologist he said that it can cause problems that can make it worse but then again they thought I had cancer and took out part of my lung and I did not have cancer now I'm on oxygen I have had a lot of exasperation but haven't had one in three years I was on daliresp for about a year I'm finally got off that now I'm on just NAC and oxygen I get very breathless just doing anything. I am going to do more research and actually call the doctor that does the surgery here and see what he says I may go for it.

[Jensmom in reply to Roessner541]

Yes, I heard there are some things that can happen. But they also said if there is a problem they can be removed or reset, I believe they have to do a scope or something to see where they are needed and if it's something the valves can fix. I'd like to stay in touch if you will and just let me know what you find. I'll do the same. I'm at 28%lung function and I struggle but I'm still here. Losing my daughter in 2016 took a toll on my health. Bad depression and quit caring. But, I'm doing better. I've been cleaning doing laundry, sweeping and washing floors this past week. More than I've done in awhile. If I listen to Dr sometimes, they'd had me dead already. Well, I'm proof that even at 28%, you can still do, just slower and breaks in between. I use a lot of herbal remedies too. They help a lot for me. Let us know!

[Roessner541 in reply to Jensmom]

I am very sorry about your daughter mine is alive but hates me she hasn't spoken to me in two years. It still hurts but I am not going to force someone to see me. Sounds like you are doing pretty well. I can't do all those things. I clean up after our dog but it takes awhile. Before I got sick iwas working two jobs. It is hard dealing with and I do worry. I just bought a book on betika breathing breathing but have been to tired to read very far. What do you do naturally that helps. Hope I am not being to nosey.

[Jensmom in reply to Roessner541]

I don't do anything special really. I've coded at hospital last 3x I was taken in. Drs said they were amazed how fast I bounced back. I do take vitamin c everyday, nac 600mg a day. Coq10 everyday. I eat a lot of fruits and veggies, and herbal teas help a lot. I still struggle, I get winded and I just stop and sit and breathe through it. I'm slow getting things done but the point is I'm active. After losing my daughter, I stayed in bed in my room literally for 2yrs. Depressed, lost and just waiting to die. But, I lived. My daughter Dawn never gave up and kept encouraging and pushing me, so did my son and grandchildren. Its been a long hard road just getting a piece of myself back but I'd forgotten how much I enjoyed turning on music and cleaning, visiting, shopping etc. I made my mind up I want to live and that's what I'm gonna do, live. I have no expiration date, so I gave myself permission to feel ok and do whatever I can. I know your struggle, we all have them. Just don't give up.

[Roessner541 in reply to Jensmom]

I noticed you live in the United States where do you live? I live in Portland, Oregon

[Jensmom in reply to Roessner541]

I live in Reliance, MD. Just 2 minutes from Delaware line. Nice to meet you. Were having a beautiful day weather wise. Don't get too many in between days when it's changing seasons. I love the autumn and fall. No humidity! I live in farm country so I have to be careful. Planting and harvesting time is hard depending on weather. So, today is great. I'm congested some but took mucinex, my spikenard tincture, and lemon water. What helps you most? Sorry I'm being chatty.

[Roessner541 in reply to Jensmom]

I haven't had much problem with mucus for quite awhile. I do take 1200 of NAC I take no meds and allergy med and proair. No longer taking advair or spiriva. Don't really feel they were helping. Just started taking vitamin c and coq10 but not consistently. Is your husband still alive? You do farming? Glad there are some in the states on that website. I do like it though. How many kids do you have? I have four sons and one daughter. Three grandsons and two granddaughters. My husband is a double amputee with diabetes. So we both struggle.

[Jensmom in reply to Roessner541]

I'm glad to hear your doing well. I stopped, against pulmonologist wishes, taking spirits and advise also. When I was in hospital, they gave me breathing treatments every 4hrs of duo neb, albuterol bromide mix, and it helps a lot. I do have a pro air too. I'm stage 4 with emphysema. 28% lung function. I love farming. You know where your food has been lol. I'm divorced since 92. But I have a life partner we've been together 26yrs almost. He's very good to me. He's helped raise my 3 children. Jennifer, who passed in 2016 at 32, Dawn who will be 33, and a son, Greg Jr, will be 30. 7 grandchildren but no great grandmother yet. I'm only 57. It all sounds exhausting and very tough. It has been, but I'm blessed still in so many ways. I just hope God gives me the chance to live and enjoy life after a mortgage lol.

[Roessner541 in reply to Jensmom]

My oldest son lives with us it helps him and us as well. I was having panic attacks for awhile and quit driving. At least temporarily. My best friend just passed away on mother's day. She was a little older then me but seemed so energetic. She was alot sicker then she told me as she didn't want me to worry. We were going to take a vacation together and that didn't happen. It was sad. I did just get my passport lol just in case. You never know.

[Jensmom in reply to Roessner541]

I hope you still take that trip. I'm sure it would make her happy. My son moved out 2yrs ago. He has a fiance, and she has two boys, 4 and 5. They're a handful. And one due in February. He moved to Tennessee. Dawn lives 5 minutes from me. My 2 grandchildren Alex and kiera live in San Diego. I miss them so much. They are Jen's babies. He is 14 and she's 12. They are wonderful children. Its been hard for them losing their mom. But their dad is an amazing father. And every year they come and stay from 3wks to a month. I'm diabetic also but only take pill twice a day. I'm sorry your husband had to lose his legs. My grandfather had both removed too. Life can be very challenging some days. Having someone to chat with helps me. You don't feel so alone. Ppl who don't have copd or other issues its hard for them to understand. They think you need to just get over things and go on. Kind of hard when your hearts broke and can't breathe. They mean well though. I'm an Insomniac so if you ever want to just chat or anything, just message me ok. Its been nice talking with you. Enjoy the rest of your day😊

[Roessner541 in reply to Jensmom]

I am too have to use a sleep aid melatonin. That kind of throws me off to. Would like to sleep without it.

[Jensmom in reply to Roessner541]

I use triple strength melatonin. But my pulmonologist also prescribes Xanax for me. I have bad anxiety and panic attacks. They've gotten better with time and work.

[Roessner541 in reply to Jensmom]

My PC doctor took me off my panic attack meds said it could cause early onset Alzheimer's. I was angry at first but learned to deal with it with breathing and meditation. I ended up in the hospital about six different times so when they took me off I was very frightened. I couldn't breathe at all when I had an attack. The EMTs came once and thought I was dead.

[Jensmom in reply to Roessner541]

I know how scary that is. The emt have come 4 times and each time I was in bad shape. Last February I was taken to hospital and when I woke it was 10 days l8tr and I was intubated. I had pneumonia and it went sepsis. Then in January this year I went by ambulance twice. First they released me, then I was back 2 in the morning with oxygen at 45. I was dying. I coded 3x and when I came to I was intubated and had broken ribs from cpr. I'm very grateful to the nurse that jumped on me and brought me back. Its been a rollercoaster I guess, but its what made me determined to live. If I start feeling badly winded, I will go to er fast. Dr told me to just go or call 911. I know I'm blessed. I'm like you, I panic easily sometimes.

[Roessner541 in reply to Jensmom]

I didn't even know what it was just know I couldn't breathe or get out of it. I was at my son's house recovering once because my husband smokes and I didn't want to be around it I told my son needed to go to the hospital because something wasn't right he thought I had overmedicated my niece had to convince him to take me in by th.e time I got to hospital I was unconscious and he had to carry me in

I needed artificial breathing I had double pneumonia and a staph infection they put me in a coma for 3 days. I was in the hospital for a month and coded twice. What I didn't understand is they put all that effort into saving me then they wanted to put me on hospice. I think that is what started the panic attacks. They put me on daliresp which I stayed on for quite a while until I lost so much weight I became frightened. I started weaning myself off of those but lung doctor said I could just quit taking them. So I have only been back to hospital once and that was just for observation.

[Jensmom in reply to Roessner541]

I'm glad you made it through. Sometimes it's hard to know who to listen to. The Dr, the family doctor, or yourself. I've been doing a little of each I think. And a lot of prayer. Sou,d's like were both lucky ladies in the scheme of things.

[Roessner541 in reply to Jensmom]

I listen to God first, myself now my doctor's last. If I would have listened to myself when this first started I wouldn't be in this predicament. I had a very small nodule and I told them because of the size of it it was most likely benign.he argued with me and convinced me to have the surgery. That is where my nightmare began. It was benign just as I thought but they did so much damage to my lung they had to see cow skin in. My lung collapsed right after surgery all the tubes had to be put back in and I got a horrible infection. They made a medicine that was so toxic it made me have acute heart and liver failure. It was a nightmare.

[Mimibx3 in reply to Jensmom]

Me too never sleep....I have a nightie that says never sleeps. I use melatonin, take doxepin, (old anti depressant drug) and still up until 4:30AM but sleep til 11 most days some days get up earlier.

[grandmagolfer]

I asked about it when I saw my pulmonologist. He said I wasn’t a candidate for it. No explanation why or any explanation about it. Just brushed me off .

[lindalou12]

Hello Roessner, I don't usually post often, but had to chime in on this. My husband hopefully will be having this procedure done. He had the last test last week to be able to meet the criteria for the endoscopic lung volume reduction. We are meeting with the pulmonologist on October 7, 2019. He is at 26percent lung function. Some of the criteria is that you have to be 4th stage, and that the emphysema is in the upper part of the lungs. He had to have a few breathing tests also. He is excited about this as he talked to someone that had it done, and they are off of their oxygen completely. I will post again if he has it done, and how it effects his copd.

[Mimibx3 in reply to lindalou12]

Sounds wonderful good luck!

[Roessner541]

I am so happy for you and your husband.

[lindalou12]

Well, after consulting with the pulmonary doctor that does the valve surgery, my husband decided against have the procedure done. The risks are higher than what we thought. 32 percent chance of something going wrong, like lung collapse and other things. He is doing well right now, and doesn't want to do anything to spoil it. Kind of disappointing, but has to be his desision.

[Roessner541 in reply to lindalou12]

I am so sorry.