This topic contains 12 replies, has 6 voices, and was last updated by  Brittany Foster 4 months, 2 weeks ago.

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  • #17286
     Colleen Steele 
    Keymaster

    When battling PH there are obvious things such as cigarette smoke or heavy perfumes that can irritate the symptoms of the disease. Have you discovered triggers that might not be so obvious that you have had to explain to your friends, family and/or caregivers?

    For example, my son was diagnosed with PH as a child. As his disease progressed I noticed I was having a difficult time getting him to brush his teeth every day. I sat him down to discuss the importance of caring for his teeth and that’s when he explained that the minty flavor of the paste made it difficult for him to breath. I was forcing him to brush and he was struggling every time he did. We switched to a child’s fruit flavor tooth paste and that is what he used until his transplant at age 14. Can anyone relate?

  • #17317
     Jimi Mcintosh 
    Participant

    Nearly anything that is strong, pungent, can affect you. Blooming Bradford pear trees shuts my breathing down. Locker rooms, sweaty clothes and
    Diesel vehicles causes me to reach for rescue inhaler. I love to swim, but, I cannot breathe in an enclosed pool. Know what your triggers are, and try to avoid them, whenever possible. I find that “Arm & Hammer” Pet Fresh generally works to eliminate these odors in cars and homes with carpet. I purchase it at “Dollar Tree” , when it’s in stock.

    • #17320
       Jen Cueva 
      Participant

      Great way to find solutions, Jimi! You are so correct as those strong and pungent smells are the worst!

      Is the Pet Fresh Carpet you’re getting a neutralizer, not scented ? Thanks for sharing .

  • #17319
     Jen Cueva 
    Participant

    I seem to have such a keen sense of smell since PH, Colleen! I find that cigarette smoke is definitely a huge one, my Stepdad smokes and smells like it , he knows I rarely spend too much time around him as he cannot stop the smoking for more than like a few hours. Just sad!

    Mostly things like Vick’s and strong odors seem to affect my breathing, lately it’s whatever is blowing in, darn allergies ! ( Never affected me much until the last few years )

    I know my tastebuds ha e changed as well, my PH Doc said it was the meds, some days I just cannot even be near eggs cooking and meat often is a tough one for me. Often my food all lacks flavor , not due to seasoning , etc, it’s my tastebuds. Does anyone else experience this ?

    Interesting that your son was like that with his toothpaste , I’m glad y’all were able to talk and you found a solution!

  • #17321
     Colleen Steele 
    Keymaster

    First of all, yay, we have Jen back after some technical difficulties! I don’t recall my son having taste bud issues but I can imagine that over time the meds start playing cruel little tricks like that. Jen, it’s funny that you specifically mentioned Vick’s because that has always been a big no for my son. The smell would literally take his breath away and even since transplant he doesn’t want it near him. I hear you about the cigarette smell too! Years ago we were looking into buying a used car and my son could tell in a second if someone had smoked in one of them. The dealer became indignant that they had cleaned all of their cars well and he couldn’t smell anything, but nope, couldn’t hide that smell from my PHer. Nice try though.

    Jimi, thanks for sharing the “Arm & Hammer” tip! I never thought to try that, and we might be searching for a used car again. We still wouldn’t buy one with a smoke odor but to freshen up any other smells I will keep it in mind. I know my son could never be at an in-door pool either. The second he would walk into the room he described it as the feeling of being punched in the chest. Both the heat and the odor was too much for him.

    • #17330
       Jen Cueva 
      Participant

      Aww thanks Colleen, I’m happy to be back with y’all !

      Funny story on the car , we have been to non-smoking places and I tell my hubby, someone is smoking, later he finds a man smoking just outside the area we were in. Yes, can’t hide those smells ! Lol , yes that Vick’s is horrible and most people want you to use that when you’re sick, not this family, lol

      That makes total sense with the indoor pool, the heat and all of the chemicals, so crazy as it reminded me when I tried cleaning my toilet with bleach in my early PH days, definitely not a good idea!

  • #17529
     Margie Novak 
    Participant

    Well for me….. and you can laugh at this…. I have always always had my hair colored blonde. The last time I went to the hairdresser and she started to put the dye on my hair I thought I was going to choke to death! I could not breathe at all. I had my oxygen on and it was still difficult. I suffered through it praying that the dye only had to stay on for 20 minutes but there is no avoiding that hair coloring smell if I want to be a blonde!! The things we do to look semi-good!!! take care margie

    • #17535
       Brittany Foster 
      Keymaster

      Oh gosh Margie!!!! I know that smell all too well. Before my breathing got worse a few years ago, I loved going to get my hair done (I’m a natural blonde but keep up with the highlights and the smell of the blonde is super strong!) . I also get really sensitive eyes from it and they start watering. I have noticed over the past few years that my allergies and sensitivity to smells has increased dramatically!!! Do you notice a shift in your body’s response to smells, allergens, etc?

    • #17555
       Jen Cueva 
      Participant

      Ohh Margie, too funny, but I can relate! I’m a natural brunette but get highlights and now I can tolerate the hair color as it’s all natural and not so many chemicals. That’s definitely one I forgot about and nail salons , too, certain ones can make me sick. I agree with Brittany as I think the last few years my allergies for sure, have increased.

      Thanks for sharing, yes, the things we do for beauty, hehe

      • #17565
         Brittany Foster 
        Keymaster

        It’s so crazy how I am so much more sensitive to allergens than I ever was before. The cat and dog at my mom’s house bothers me a lot more they ever did before. It’s like I go into their house and just immediately start coughing. It all started after my surgery, maybe because I’m actually breathing AIR in now hahaha! But seriously, that COULD be the problem.

  • #17558
     Kathleen Sheffer 
    Participant

    I noticed I’m far more sensitive to smells since my transplant. Might be a side-effect of Prednisone for me.

    I first noticed this when I was in the ICU right after surgery. My family had eaten some pizza with whole garlic cloves on and I could smell it on my dad’s breath for days. Disgusting! I didn’t want him in the room and kept accusing him of eating more of it (especially aggravating because I couldn’t eat anything).

    • #17564
       Jen Cueva 
      Participant

      Hi Kathleen!
      Wow, I couldn’t imagine that garlic breath for 2 days, hehe ( I love garlic )

      But, I think in the hospital, not able to eat anything, we tend to automatically just be more sensitive to smells, I know I am. I’m sure the prednisone didn’t help! 🤗

    • #17566
       Brittany Foster 
      Keymaster

      Yes the medications that they gave me after surgery definitely increased my sensitivity to smells and changed around my taste buds I think. I never was a spicy food fan, now I load up the siracha for the flavor and pour on the hot sauce. SO WEIRD! and the garlic smell would definitely get to me too. I got sick and threw up a few days after my surgery when I started eating foods again it was like my body just wasn’t used to it. I smelled that gross throw up smell in my room for days later and it was repulsive.

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