June 1, 2018 at 5:03 am #12850
Scents are an important part of our senses, and has been the one I have struggled most with since my diagnosis of idiopathic pulmonary fibrosis (IPF). I used to burn candles, use scented body wash and lotions, wear perfume and diffuse strong-scented oils before IPF. Now, I detest many of these things because I am increasingly sensitive to most scents.
Not only are burning candles a safety hazard now that I have oxygen in my home, I also struggle with strong scents from candles and perfumes because they give me such a headache. Sometimes due to certain scents, I also feel nauseous. Other than the calming scents of a few essential oils, I prefer bland soaps, lotions and try to avoid people with strong perfumes. This sensitivity to scent is something that I never seemed to notice before my diagnosis.
Do you have an increased sensitivity to scent following your diagnosis of IPF/PF?
If so, what scents are bothersome to you and how are you effected by them?
One particular scent that is quite enjoyable for me, and actually one that I rely on often to alleviate symptoms such as a headache or nausea, is pure peppermint oil. I can only tolerate a little bit at a time, but it does seem to help me when I am struggling with other scents that might be overbearing, such as perfumes or lotions.
Please share your thoughts on increased scent sensitivity since your IPF/PF diagnosis with us!
June 1, 2018 at 9:53 am #12860Maureen LakeParticipant
Definitely especially scented candles (Christmas, Cinnamon or Pumpkin & perfumes especially Este Lauder.
June 2, 2018 at 8:01 pm #12880
Thanks so much for contributing your comments to this thread! This is definitely something I’m interested in hearing from others about their experience with increased scent sensitivity since their IPF/PF diagnosis, so I appreciate your taking the time to reply.
The scents you mentioned in candles are very strong ones, and something I would imagine I would struggle with as well. I used to like cinnamon but can only take very small / light scents of it now. I can actually tolerate it better in an essential oil vs. a candle, not sure if it is has something to do with it being natural? Not sure. I also cannot tolerate perfumes of any kind, but especially Estee Lauder due to how strong it is! Do you end up having to say something to people (ie. in your workplace, family functions, etc) who wear too much of a strong scent? If so, are they usually understanding? I find this so awkward but sometimes I just have to.
Thanks again for sharing!
June 2, 2018 at 4:44 pm #12875Phyllis FanninParticipant
I am definitely more sensitive to all scents. There are times when I smell things that no one else does. I ask my husband “What is that smell?” His response is “What smell?” I can’t tolerate the smell of exhaust fumes, cigarette smoke, some types of flowers and perfumes, just to name a few.
June 2, 2018 at 8:06 pm #12881
Thank you so much for contributing your comments to this thread! As I mentioned above to Maureen, I’m so curious to hear from others on this topic.
I can certainly relate to being more sensitive to all scents as well. Do you find a particular scent more difficult to tolerate than others? I know some people find scents of mint (peppermint, eucalyptus, etc) overwhelming where as others find food-related scents such as cinnamon or pumpkin to be too much. I haven’t determined yet which ones I struggle with most, but usually the stronger the smell, the harder time I have.
Sometimes I notice smells others don’t as well. Interesting how that happens! Did you have increased scent sensitivity right since your diagnosis, or is this something that developed with time?
I am with you, and absolutely cannot stand the smell of cigarette smoke (actually, inhaling others’ secondhand smoke has landed me in hospital a couple of times) and usually if I am following a truck or vehicle with strong exhaust fumes, I remove myself far enough back so I can’t smell it.
Thanks again for sharing your experience(s) with us!
June 10, 2018 at 11:18 am #12981
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 coughing. Food odors while cooking (I am a foodie and love to cook) are troublesome as well. I’ve had to get used to taking barely hot showers due to the steam from hot water…and I do keep my O2 on while showering.
These are just a few of the challenges of living with IPF. I’m now (finally) on the transplant waiting list at UCLA! Even though I live in Oregon, I am now living with family in the Los Angeles area since I need to be within 2 hours of the hospital at all times.
Our family motto is, “…always an adventure!”
June 10, 2018 at 8:56 pm #12982
Thanks so much for sharing your experience through your comments on this thread. It is so great to have you a part of our online forums community!
I am so sorry to hear of your struggles with scents and air quality, before and following your diagnosis of IPF. It sounds like you’ve identified many of the triggers that cause a cough for you. Did you have to do this all through trial and error? I hope not for you, but I suspect that you have had to. What a tough time! Interesting that you mention the car AC… this is something I am trying to identify in my own situation, and whether or not it triggers the cough and shortness of breath. Some other things for me right now are: secondhand smoke, strong scents of perfume and candles, or sometimes car exhaust. Thankfully it isn’t too bad yet but I try and avoid these things when I can, sounds similar to you. I also am now starting to keep my oxygen on in the shower as well! What alleviates your coughing for you once it starts?
Wow, congratulations on your listing for transplant. That is great news! Please keep us posted if you can. Was UCLA your top choice for transplant center, or were you referred there? Just curious given that you mentioned you resided in Oregon. We don’t have the option of multiple sites in Canada, there is only one known hospital that performs lung transplants.
I hope your motto of adventure turns out to be just that, and that everything goes smoothly for you. I look forward to getting to know you a bit more through the forums Steve. Thanks again for sharing your experiences with us!
June 10, 2018 at 9:11 pm #12984
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 grew up down here, so I’m familiar with the territory! Plus, UCLA is one of the top centers in the US!
Are you a transplant candidate?
- This reply was modified 4 years ago by Charlene Marshall. Reason: formatting
June 11, 2018 at 7:32 am #12993
Thanks for your prompt reply. Your post on this thread has been really informative to me, and I hope to start ‘tracking’ better what triggers a coughing fit for me as a result. I didn’t know there could be so many factors. I seem to be fine with A/C in the house, however, I think in the car it might be a problem. Maybe I need my air filters changed, although I do this on a fairly regular basis. I also avoid smoke at all costs! Sadly, breathing in secondhand smoke by accident has sent me to hospital a couple of times actually.
What is your FEV rate(s) if you don’t mind my asking? I don’t have too many struggles doing stairs yet, although I usually have to rest in the middle or ensure my oxygen is on and turned up in order to do several stairs at once.
Ahh that makes sense re: UCLA and being familiar with the LA area. I was actually there to give a talk in February, it was amazing! Keeping my fingers crossed that you get the perfect pair of lungs soon! 🙂
Yes, I will be a candidate for transplant just not yet due to my lung function. Trying to hold onto my own lungs as long as possible right now but once my FEV and other function tests are consistently at a certain range for 3 months, then we will begin the referral and testing process.
Thanks again for connecting and wishing you well.
June 11, 2018 at 8:37 am #12997
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 to mid 90s before I can move on. It typically drops to low 80s with minimal exertion.
I, too, ended up in the hospital for 4 days last month due to a respiratory virus I caught from a close friend. They had to temporarily suspend me from the wait list for 3 weeks until the virus was completely out of my system. Frustrating for sure! But I’ve been back on the list as of May 31. Since I am now 61, UCLA’s protocol is that people between 60-70 typically will only receive a single lung. The research tends to show that the longevity post-surgery is virtually the same for this age group whether you receive a double or single lung transplant…and if they can help 2 people with one donor, that’s their prerogative.
My left lung is much worse than my right. I had a radioactive contrast procedure done in April that showed my left lung was only getting about 25% blood/oxygen flow compared to my right which was getting 75%.
So, just passing the time waiting. Fortunately, I still have a part-time job that I can do completely online (web stuff), so that gives me something to do!
June 12, 2018 at 11:56 am #13003
Thanks again for replying and sharing your experiences with me. I find it so valuable to hear from others and about their experience, but I know sharing isn’t always easy so I appreciate it!
If I can ask, when were you diagnosed again? It just helps me understand the timeline / progression a bit better. My FEVs are usually in the low to mid-50s but of course alternate if I am sick, fatigued, etc. I struggle with stairs and inclines as well, but can still do them just slowly as you say. It’s hard for me to accept this as I often get odd looks from others about not being able to do stairs, or taking the elevator at 30 years old. The only time this doesn’t happen is when I have my oxygen on.
So sorry to hear of your hospitalization due the respiratory virus. It drives me nuts when this happens, and I try to raise awareness about germ exposure to others when I get admitted to hospital. I hope it helps others understand the importance of preventing germ exposure, especially to those of us immune compromised. I’m glad you’re back activated on the list as of May 31st and I hope lungs come for you soon!!! Have you had any calls yet? I know they often say that it is common to get a couple of “false” calls before the real deal, but that adrenaline would be overwhelming. I do hope the first call is the best call!
My left lung is also far worse than my right, I wonder if there is a pattern for this? Lol. So are you listed for single and/or double lung transplant? Just curious. It doesn’t seem common for single lung transplants to be done here as I don’t know many people who’ve been through this here… mostly double.
Glad you can still work for something to keep your mind occupied as you pass the ‘waiting time’. If inclined, go enjoy the ocean for me too .. my favourite place in the world and I am no where near the ocean!
Take care and talk to you soon. Hoping everything is going well for you Steve.
June 13, 2018 at 10:03 am #13031
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 (different medication). Didn’t work. Long story, short…we tried different methods over the course of about 7 or 8 years…and the cough became increasingly more troublesome.
Fast forward to 2014. My wife and I were at the end of our 5th trip to Uganda (working with orphans) and I became very ill on the last night (super high fever). We thought it might be that I contracted malaria (very common) and we had with us the ‘malaria cure’ – a 2-day course of strong antibiotics. After the 36-hour travel home (during which I was very miserable!), I still felt bad and headed straight to my PCP. As the nurse was taking my vitals, my heart rate was over 170 bpm and wouldn’t go down.
So my doc sent me straight across the street to the hospital where they put me in ICU for 3 days. My heart rate still wouldn’t go down, even with the meds they were trying, so they decided to try and ‘kick-start’ my heart by stopping it (with drugs) for a couple moments (felt really weird!), then restarted with another drug. It didn’t work! On the 3rd day, my heart self-converted back to a normal sinus rhythm on its own and they discharged me. While I was there they did several EKGs as well as a chest x-ray, looking at my heart. A few days later my doc calls me and tells me that my chest x-ray revealed that my lungs were very ‘cloudy’, so they wanted me back to do a hi-res CT scan. A couple days later, the radiologist and local pulmonologist confirmed that I had IPF.
The one ‘pulmonologist’ in our little town is a general practitioner that specializes in lung disorders and sleep studies. Fortunately, my wife works for the hospital (grant writer) and I was able to be referred to a very good pulmonologist that had studied under one of the nation’s top lung specialists up in Seattle at UofW. He’s amazing! At first he tried to refer me to the program at UofW, but they have very stringent requirements for acceptance into their program. At the time, I was a bit overweight and they absolutely don’t accept anyone with a BMI higher than 30. So he said we could either try Stanford or UCLA. I don’t have any contacts in the Bay Area, but I have family in Southern California that I was welcome to stay with, so we chose UCLA. They are a little more ‘forgiving’ when in comes to the weight issue, but still wanted me to lose (which I did!).
In March of 2017 I went to UCLA to begin the lung transplant evaluation (many appointments tests and procedures over the course of 2 weeks). My test results at that time weren’t quite low enough to put me on the list yet. So they decided to wait and have me come back every 2-3 months for follow-up tests. Over the course of that year, my results were steadily declining. Slowly at first, but more rapidly since this past November. At my appointment 2 ½ months ago, my UCLA pulmonologist said, “It’s time!”. So I came back down in April to re-do the transplant evaluation process. I met with the surgeon, psychologist, social worker, cardiologist (had a heart cath procedure), etc. A couple weeks after my tests they presented my case to the larger transplant committee, and I was accepted into the program for one lung (due to my age – 61). Their protocol is anyone between 60-70 receives a single lung unless there are very special circumstances that would warrant a double.
So, now I’m here in LA awaiting ‘the call.’
The beach is also my happy place. I was born and raised in a small beach town here in SoCal, so I go every time I’m down here! Even living in Oregon, the coast is only 90 minutes away from where we live, and we go there often!
Please feel free to ask any questions! I don’t mind at all!
Blessings on your life journey!
Steve ( 0 )====:::
(that’s supposed to be a guitar!)
- This reply was modified 4 years ago by Steve Daggett.
June 14, 2018 at 8:01 pm #13053
Thank you so much for reposting this for me! Somehow it disappeared into the abiss but I didn’t want to miss what valuable insight you’ve shared, so I appreciate your willingness to share again.
You were diagnosed a little over a year before me, my date was April 2016. So sorry to hear of your lengthy experience with a dry cough and repeated attempts at medications to treat the cough. I read somewhere that so many patients with IPF are mistaken for having asthma and oftentimes, by the time their IPF is formally diagnosed, the progression of the disease is quite bad. Were you prescribed both regular-use inhalers (ie. a corticosteroid taken a couple of times throughout the day) plus rescue inhalers, to open up your airways during a dry cough spell? Right now I am on 4 inhalers which I don’t love, nor do I know many others with IPF who use inhalers.
That must have been so scary for you and your wife to fall so ill while away. Glad you got home when you did, although I can only imagine how difficult the trip was for you to get home feeling so unwell. It must have also been so scary to learn how high of a heart rate you had, and that it wouldn’t go back down despite medications. Wow! I had a HRCT scan as well to diagnosis me, but I had to fight for it as they suspected I had IPF for about 4 months before actually looking into it I’ve since learned. They kept saying, “but she’s too young”…
Glad you were able to be referred to a pulmonologist that is so specialized and sounds as though you like and are comfortable with. This is so important! It sounds as though it wasn’t a long time between when you were diagnosed to when you were referred to the lung transplant program? Glad you were able to complete the testing and get listed for transplant, as scary as it is. Hmm, I wonder if other centres follow that protocol about single lung transplantation based on age? I’d never heard of it but I certainly am not well-versed in any transplant programs in the US. I’d be curious to know though!
I hope you’re finding ‘feel-good’ things that are making the time pass, and keeping you feeling well in the interim. You’re so lucky to be by the beach, and I’m very jealous. I just love the ocean and beach, like you, and plan most of my vacation destinations around coastlines and the beauty of the ocean. I hope to head to England this September, but not to London , instead I want to see the Lake District and the coastal sections of England more than the city of London. I’ll spend a day in London for sure, but definitely more interested in coastal destinations.
Thank you again for sharing and I look forward to continuing to chat with you. Kindest regards, and may the perfect pair of lungs come for you soon Steve.
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