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Off Topic :
Zephyr valves

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 Jeaniegirl (original poster member #6370) posted at 1:42 AM on Saturday, October 14th, 2023

Okay, has anyone here had this procedure done or know of anyone who has? I haven't been doing well with breathing issues. After the cancer and right lung lobe removal in June '20, I did okay for a while but then developed COPD recently after many bouts of bronchitis. Losing one's breath and absolutely unable to breathe is the scariest thing ever. Panic attacks accompany that. Several times my oxygen levels have dropped below 70, which requires ER visits as my heart rate soars during these episodes.

Next Wednesday I will see a new pulmonologist who specializes in COPD and will possibly start the process to see if I'm a candidate for the non-invasive procedure of inserting zephyr valves in areas of my lungs. Most of my research show positive results but there are also some scary stories about lungs collapsing afterwards. I've had THAT experience once -- before lung surgery during biopsies of my lymph nodes to see if the cancer has spread. I was just waking up from the biopsy when the lung collapsed and I truly thought I was dying.

Any knowledge that can be passed on to me would be appreciates!

(edited to correct date of my cancer surgery)

[This message edited by Jeaniegirl at 9:02 AM, Saturday, October 14th]

"Because I deserve better"

posts: 3731   ·   registered: Feb. 1st, 2005
id 8811627
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WhatsRight ( member #35417) posted at 3:43 AM on Saturday, October 14th, 2023

Aw…I’m so sorry you are having to deal with this. ENOUGH ALREADY, right?

I hope you find out what you need to know, and that it is very very helpful. Please keep us posted.

"Noone can make you feel inferior without your concent." Eleanor Roosevelt

I will not be vanquished. Rose Kennedy

posts: 8234   ·   registered: Apr. 23rd, 2012   ·   location: Southeast USA
id 8811641
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tushnurse ( member #21101) posted at 4:44 PM on Saturday, October 14th, 2023

I had to Google this because I was 100% sure what this was. This is basically a stent to hold open those airways and they do work great.
I actually have a pt that I have followed for about a year that prior to having them placed was in the hospital or ed at least monthly if not more frequently and had very limited capacity to do much. Since these were done one side 18 mos ago the other 12 mos ago he has actually done great and no hospital or ED visits for breathing. He did go because he hurt himself gardening this summer.
So I hope this can be beneficial for you as I know how you have struggled.

Me: FBSHim: FWSKids: 23 & 27 Married for 32 years now, was 16 at the time.D-Day Sept 26 2008R'd in about 2 years. Old Vet now.

posts: 20297   ·   registered: Oct. 1st, 2008   ·   location: St. Louis
id 8811679
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 Jeaniegirl (original poster member #6370) posted at 10:36 PM on Saturday, October 14th, 2023

Tush, I don't doubt you had to research as it's a fairly new procedure, I think Youtube has a lot of testimonials from people who have had it done. I had a cat scan and a some fairly long lung functioning tests done in mid-September and those are two of the procedures to see if I'm a candidate. Right now I'm on a power pack of steroids and breathing fine and able to do things. But I surely can't take steroids forever and I know that. Hopefully I can get those results passed on to the new doctor.

I am paying for every dang cigarette I ever smoked. For sure. Can't believe I was ever stupid enough to start that habit. In law school, everyone smoked, even the professors. It was just the 'thing to do' to relieve stress - or at least we told ourselves that.

"Because I deserve better"

posts: 3731   ·   registered: Feb. 1st, 2005
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Shehawk ( member #68741) posted at 3:34 AM on Sunday, October 15th, 2023

Sending ((virtual hugs))

I am so sorry you are going through this.

"It's a slow fade...when you give yourself away" so don't do it!

posts: 1789   ·   registered: Nov. 5th, 2018   ·   location: US
id 8811727
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 Jeaniegirl (original poster member #6370) posted at 4:43 AM on Sunday, October 15th, 2023

Thank you very much.

"Because I deserve better"

posts: 3731   ·   registered: Feb. 1st, 2005
id 8811735
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number4 ( member #62204) posted at 3:14 PM on Monday, October 16th, 2023

I can't believe it's been three years since your cancer diagnosis! Wow. You went through so much then - I remember how painful you described the recovery period.

So sorry you are going through all of these complications.

Me: BWHim: WHMarried - 30+ yearsTwo adult daughters1st affair: 2005-20072nd-4th affairs: 2016-2017Many assessments/polygraph: no sex addictionStatus: R

posts: 1372   ·   registered: Jan. 10th, 2018   ·   location: New England
id 8811819
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 Jeaniegirl (original poster member #6370) posted at 12:00 AM on Wednesday, October 18th, 2023

Tomorrow is my first appointment with the new lung doc and I'm looking forward to hopefully getting some answers. I've been going through my medical records and see there is no diagnosis of COPD from my first lung doc (the one I'm getting away from because he's had me confused with another patient with the same name). I think I first heard the word "COPD' from the respiratory therapists. I am taking my history with me to the new doctor.

[This message edited by Jeaniegirl at 10:18 AM, Wednesday, October 18th]

"Because I deserve better"

posts: 3731   ·   registered: Feb. 1st, 2005
id 8811963
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 Jeaniegirl (original poster member #6370) posted at 7:54 PM on Thursday, October 19th, 2023

I got what I consider good news with the new lung doc. He says my COPD is in the early stages. He thinks the episodes of not being able to breathe are being 'set off' by something -- perhaps second hand cigarette smoke (which I try to avoid), maybe my animals and even the environment in my home. I've always considered myself a fairly good housekeeper but haven't felt like doing any 'deep cleaning' since surgery. So ..... I'm hiring someone to come and deep clean. He also suggested I have my home checked for mold since I had a severe water leak in my utility room and the floor had to be replaced. So lots to get done but I will do it all. The weather has changed so for the last 9 days, I have had no breathing issues, which feels wonderful. The new doc is getting all my medical records from the other lung doc and will go through them all and I will see him again towards the end of next month. I really liked him as he asked a lot of questions and answered any questions I had. So different from the rush rush of the other doctor. So I'm happy.

"Because I deserve better"

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id 8812123
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tushnurse ( member #21101) posted at 11:40 PM on Thursday, October 19th, 2023

Yipeee. Great news.

I'm so happy you felt a connection and have confidence in your new dr.

Me: FBSHim: FWSKids: 23 & 27 Married for 32 years now, was 16 at the time.D-Day Sept 26 2008R'd in about 2 years. Old Vet now.

posts: 20297   ·   registered: Oct. 1st, 2008   ·   location: St. Louis
id 8812147
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DragnHeart ( member #32122) posted at 12:10 AM on Friday, October 20th, 2023

That's wonderful news! Having a doc that listens is amazing.

Me: BS 46 WH: 37 (BrokenHeart911)Four little dragons. Met 2006. Married 2008. Dday of LTPA with co worker October 19th 2010. Knew about EA with ow1 before that. Now up to PA #5. Serial fucking Cheater.

posts: 25836   ·   registered: May. 10th, 2011   ·   location: Canada
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WhatsRight ( member #35417) posted at 2:37 AM on Friday, October 20th, 2023

Oh wow…great news!

I just love it when I get a good vibe from a new doc.

"Noone can make you feel inferior without your concent." Eleanor Roosevelt

I will not be vanquished. Rose Kennedy

posts: 8234   ·   registered: Apr. 23rd, 2012   ·   location: Southeast USA
id 8812156
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Superesse ( member #60731) posted at 4:09 AM on Friday, October 20th, 2023

Yes, that is encouraging!

On the mold issue: if your laundry room floor flooded, did anyone check behind the lowest part of the walls, behind the baseboard trim, if you have it? Water wicks up quite a ways in a flooded floor, and quickly, and mold can flourish behind the drywall on the wooden wall frames where nobody sees it.

Also about mold, do you have any mulch around your house or yard? Notorious for growing molds! I have serious mold allergies (skin tested years ago and took shots for a year.) I learned to always put on an N-95 mask whenever I'm disturbing mulch, raking leaves, or pruning branches (the worst! The invisible stuff that grows on bark and leaves sifts down around you as you wrangle pruning shears, and the work is just strenuous enough that I tend to mouth breathe.) I noticed every time I'd done that kind of gardening clean-up, the next day I'd be all bronchial congested, and thought I'd caught a bug. I hate working with a mask on outside, but it sure has made a difference, since I can't afford to hire anybody to do yard work and have to do this spring and fall.

What a relief to have a health care partner you feel confident in!

posts: 2197   ·   registered: Sep. 22nd, 2017   ·   location: Washington D C area
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 Jeaniegirl (original poster member #6370) posted at 1:19 PM on Friday, October 20th, 2023

Thanks to everyone for your replies and encouragement.

I am really worried about the possible mold issue. While I'm sure it can be dealt with and fixed, I already know it's going to be expensive. But I don't want to move. I can't imagine having to move and give up my peaceful country existence here. So whatever it take to fix things, it will get done. While the water leakage was confined to the utility room, I fear that mold can spread. I didn't think about this as it's an 'unseen' issue. At the end of next week, I have an appointment for a full inspection. I may have to vacate my home for a while until it's fixed, if they find mole. If so, I would probably rent a RV or travel trailer to go at the back of my property, to live there while it's fixed. I can do that as I have a second set of utilities back there. It makes sense that something is 'setting off' these attacks of difficult breathing. If there is mold, possibly weather changes bring on the attacks I have been having. I really do like the new doctor and will listen to him.

"Because I deserve better"

posts: 3731   ·   registered: Feb. 1st, 2005
id 8812174
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Superesse ( member #60731) posted at 6:14 PM on Friday, October 20th, 2023

That sounds like a good idea, Jeaniegirl, because if there is significant mold in your house, and you were to move out to an RV during a "flare up" and found you suddenly cleared up, that would help to confirm it to be an environmental trigger inside the house. Whereas if you found no improvement in your symptoms, it would suggest an exterior irritant, or at least not the house causing this. (I didn't want alarm you, it was just my background as a building inspector talking!)

The worst mold case I ever saw was on my own project, a 3 story office building. The contractor put up the thick fire-rated drywall around the stairs before the roof was on, so they could use their big crane to drop in the drywall panels. It then rained cats and dogs before the roof got on, and soon we saw all this black mold down in the basement on the bottom two feet of the fire-rated board. They washed it off with chlorine bleach, but I knew the panels were a "sandwich" of several layers thick so mold was likely still sitting inside, where it could never be reached. I tried to make them remove it but was over-ruled by the architect. I could smell a musty odor for the rest of the time I worked there!

If you promptly cleaned up the flooding and had heat on that room afterwards, you are probably in good shape.

posts: 2197   ·   registered: Sep. 22nd, 2017   ·   location: Washington D C area
id 8812302
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 Jeaniegirl (original poster member #6370) posted at 8:03 PM on Friday, October 20th, 2023

Superesse, it really does concern me. I watch enough house-flipping shows to know how dangerous mold is. I do know if it's a small amount. bleach can kill it. I hope it's not a huge problem. It took me over a week to get someone out to clean up the room and replace the flooring and it was summer with lots of heat. Mold is scary as I've read it's 'living spores' and none of us nee that to invade our bodies. Especially someone with only 1-1/4 lung capacity.

"Because I deserve better"

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id 8812318
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Superesse ( member #60731) posted at 9:51 PM on Friday, October 20th, 2023

Well now, not to panic. Have your inspector do a sniff test (with his nose!) before disturbing any surfaces, and you close off the room where he does any such investigating. Half the battle with construction/demolition is zoning off the work area, I used good old polyethylene plastic sheeting and duct taped edges of it to the floor, walls and ceiling, just leaving an access flap overlapping for a "door." Otherwise, I'd never have survived my remodels!

Now where can you find a good RV to put out back? 🙂

posts: 2197   ·   registered: Sep. 22nd, 2017   ·   location: Washington D C area
id 8812331
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 Jeaniegirl (original poster member #6370) posted at 11:37 PM on Friday, October 20th, 2023

smile My sister actually has a nice motor home I could borrow if I need to.

Thanks for your input, I'm trying not to worry. I'm keeping that room closed off and if I have to go in there, putting on a mask.

"Because I deserve better"

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