@steve-daggett
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Sandra Vanzyl and
Steve Daggett are now friends 4 years, 3 months ago
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Steve Daggett posted an update 4 years, 7 months ago
@charlene-marshall Greetings Charlene!
Regarding meeting the donor’s family (which I’m totally open to!)… The typical policy is 6 months post op at the earliest. I can, however, write an anonymous and very redacted note, using no names and/or details about even where the surgery took place…and that I’m open to meeting them.
If they decide…[Read more]-
Hi @steve-daggett, very interesting to learn about this process. I am sure it would be such an emotional experience to meet your donor’s family. Keep us posted if you choose to write a letter and/or if they reply… I’d love to hear. So glad you’re doing so well 🙂
Charlene.
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Steve Daggett replied to the topic Things to Keep in Mind When Considering a Lung Transplant in the forum Pre/Post Lung Transplant 4 years, 7 months ago
Greetings!
I just had a single lung transplant 3 1/2 weeks ago, and I’ve been off oxygen since the day after the surgery!
I was in the hospital 14 days, partly because I was having some heart arrhythmia that they wanted to monitor. Otherwise I could have gone home earlier.
The difference was dramatic! There are 16 stairs to get into our house.…[Read more]
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Steve Daggett replied to the topic Two New Symptoms: Are They PF-Related? in the forum Diagnosis Information and General Questions 4 years, 7 months ago
Greetings Charlene!
In response to your post, BOTH cold weather and strong scents have affected me for a long time (sounds cold up there!)
In other news, it’s been 3 weeks ago today that I got the call from UCLA that they had a lung for me! I was out of state at the time, but I was able to catch a last-minute flight that got me there in time!…[Read more]
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Steve Daggett replied to the topic Progression involving other organs in the forum Living with Pulmonary Fibrosis: 50+ 4 years, 8 months ago
Hi Janet!
I just saw your post from 3 weeks ago. Hopefully you are doing better??
I, myself, just got out of a 5-day hospital stay for heart arrhythmia issues, which is a common ‘tandem’ condition with PF/IPF. My heart rate was bouncing all over, from as low as 30BPM up to 150+. I have had this issue for a few years now, and have had a cardiac…[Read more]
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Steve Daggett replied to the topic "Surviving IPF" is More Than Just the Physical Impact of the Disease in the forum Living with Pulmonary Fibrosis: 50+ 4 years, 10 months ago
I’m sorry you’re having to navigate difficult situations with this. I’m not sure if you’re at a place in your relationship where you can ‘debrief’ the instance. In other words, are you able to sit down with her and say, “Can we talk about what happened the other day?” Sometimes removing the emotions and looking at it objectively can help. Saying…[Read more]
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Steve Daggett replied to the topic "Surviving IPF" is More Than Just the Physical Impact of the Disease in the forum Living with Pulmonary Fibrosis: 50+ 4 years, 10 months ago
Greetings again, Charlene!
If relationships didn’t have ‘hiccups’ once in a while, I would question the depth of the friendship! As friends -including spouses and significant others – get closer, the walls we’ve built to protect our innermost core can start to come down, and it’s often scary and painful. As a very wise man once said, “iron…[Read more]
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Steve Daggett replied to the topic "Surviving IPF" is More Than Just the Physical Impact of the Disease in the forum Living with Pulmonary Fibrosis: 50+ 4 years, 10 months ago
I, too, have had several friends and family members talk about their life situations and then end the conversation with, “but who am I to complain…YOU’RE the one with the terminal disease!”
I am not a complainer, nor do I infuse conversation with my disease (unless directly asked), but people create their own barriers…possibly as a way to…[Read more] -
Steve Daggett replied to the topic Dealing with Chemicals at the Hairdresser in the forum Diagnosis Information and General Questions 4 years, 10 months ago
Strong odors have been the bane of my existence for several years. While I don’t frequent hair salons (I’ve been shaving my head for several years), I do often accompany my wife at nail salons. I usually have to sit next to the door (if it’s open) or wait outside if there are several people getting nail polish applied/removed. Otherwise the odor…[Read more]
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Steve Daggett posted a new activity comment 4 years, 10 months ago
Greetings! She mentioned a ‘Steve Dragoo’. Is she referring to me? I don’t recall talking about herbal supplements 🙂
Maybe it’s the lack of oxygen!-
No, you are absolutely right @steve-daggett! So sorry, I tagged you by error and meant to tag @steve-dragoo! I didn’t realize how close your names are 🙂 Steve, do you mind also sharing the herbal supplements you use with @barbara-haight-wolfer? Thank you!
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Hi Charlene – I am not sure how to tag someone on PF yet. I posted those supplements under the Metformin thread but let me know if Barbara needs them posted directly somewhere. Happy to help…. SteveD
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You’re wonderful @steve-dragoo thank you! I hope @barbara-haight-wolfer can see you response. Here is the link for you Barbara: https://pulmonaryfibrosisnews.com/forums/forums/topic/metformin-useage-as-treatment-for-ipf/
If you’re interested Steve, to tag someone you just type @ in front of their name and a list of names depending on the letter…[Read more]
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@charlene-marshall – thanks I see it works… @steve-dragoo Hahahaha
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I am new on this forum and am not sure how it works. Thank you all for leading me to sites.
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Hi @barbara-haight-wolfer, welcome!
I know the platform can be a bit difficult to navigate at first but basically check out this page first: https://pulmonaryfibrosisnews.com/forums/ .. this is where all the topics and discussions take place and you can find what you’re interested in reading about in the link I shared with you, then just click…[Read more]
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Steve Daggett replied to the topic Symptoms of Laying Flat with Pulmonary Fibrosis. in the forum Join the Discussion: Welcome to all PF/IPF Patients 4 years, 11 months ago
Hi Charlene!
You must be either in Britain or Australia? (Celsius VS. Fahrenheit) But I know that’s hot!
Regarding puffers/inhalers, before my diagnosis my doc thought I might have asthma. We tried several types of puffers, but to no avail. Probably tried 6 over 2 years. Nothing helped.
In the morning I just ride it out. The cough medication…[Read more]
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Steve Daggett replied to the topic Symptoms of Laying Flat with Pulmonary Fibrosis. in the forum Join the Discussion: Welcome to all PF/IPF Patients 4 years, 11 months ago
Once I was awakened (still half asleep) thinking I was at the beach on a windy day. Turns out my cannula was blowing in my ear!
My pulmonologist prescribed Tessalon Perles as needed for coughing, and it seems to help. I don’t take it every day.
https://en.wikipedia.org/wiki/BenzonatateI typically fall asleep propped up by 2 pillows, but once I…[Read more]
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Steve Daggett replied to the topic Symptoms of Laying Flat with Pulmonary Fibrosis. in the forum Join the Discussion: Welcome to all PF/IPF Patients 4 years, 11 months ago
I rarely am able to lay flat. I typically sleep with at least 2 pillows, sometimes 3. It’s too uncomfortable to lie flat on my back. I either have to elevate my head/upper body and/or lay on my side.
When I first lay down I typically have a few coughing episodes, then it calms down. I’ve resorted to having to take an OTC sleep aid (like ZZZQuil)…[Read more]
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Steve Daggett posted a new activity comment 4 years, 12 months ago
Just sent another reply!
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Thank you @steve-daggett! So appreciate it – I didn’t want to miss out on the valuable insights and information you so kindly shared with all of us 🙂
Charlene.
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Steve Daggett replied to the topic Increased Sensitivity to Scents After Being Diagnosed with IPF. in the forum Diagnosis Information and General Questions 4 years, 12 months ago
No problem at all!
I was diagnosed in February 2015 – but quite by accident. I’ll explain later.
About 10-12 years ago I started developing a persistent dry cough. After about a year I finally went to my PCP to check it out. He thought it was probably some type of asthma, so we tried an inhaler. Didn’t work. After 4-5 months we tried another (diff…[Read more] -
Steve Daggett posted a new activity comment 4 years, 12 months ago
No problem! I’ll send another reply in a bit. I remember most of what I said! 🙂
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Steve Daggett replied to the topic Increased Sensitivity to Scents After Being Diagnosed with IPF. in the forum Diagnosis Information and General Questions 4 years, 12 months ago
Thank you!
No problem with sharing that my FEVs have been in the low 40s. They’ve been under 50 since November. I do try to get out and about often, but if there are stairs and/or inclines (even minor ones) I have to take them very slowly – and then it takes about 4-5 minutes to “catch up”: coughing, then waiting for my O2 saturation to get back…[Read more]
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Steve Daggett and
Charlene Marshall are now friends 4 years, 12 months ago
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Steve Daggett replied to the topic Increased Sensitivity to Scents After Being Diagnosed with IPF. in the forum Diagnosis Information and General Questions 4 years, 12 months ago
Yeah, a/c has been a cough trigger for a long time! Smoke of any type is avoided at all costs. Even the slightest physical activity has become a cough trigger (walking short distances or up a flight of stairs)
I had the option of Seattle (University of Washington) or UCLA in Los Angeles. I have a better living/accommodation in the LA area, and I…[Read more] -
Steve Daggett replied to the topic Increased Sensitivity to Scents After Being Diagnosed with IPF. in the forum Diagnosis Information and General Questions 4 years, 12 months ago
Appreciate your posts, Charlene!
Even before I was diagnosed (3 years ago), strong scents (perfume/cologne, smoke/vapor of any kind) always trigger a coughing fit for me. Also, when air conditioning (car, house, etc.) kicks in, coughing ensues. I have to avoid the cold food/freezer sections in grocery stores because the cold air triggers…[Read more]
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