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    • #14285
      Brittany Foster
      Keymaster

      One of our newest members to the forums brought up a side effect that doesn’t usually get a lot of attention. She wrote that she has noticed changes with her voice when talking and states “I have trouble with my voice “fading.’”

      Like our newest member, I have also experienced changes in my voice that happen when my oxygen levels are low or happen when I try to hold a longer conversation. My voice becomes raspy and hoarse and I feel a constriction around my throat. My doctors have said that I have reactive airways and something like low oxygen might trigger the airways to constrict and make my voice more hoarse than usual.

      Have you experienced changes in your voice like raspy voice, hoarseness, or experienced your voice fading? What has your doctor said could be the cause of this for you? Are you seeing a specialist like an ENT for this?

    • #14321
      Robin Taylor
      Participant

      Hi all! Yes. This is constant for me. If I don’t say much all day, then I answer the phone my voice is almost non-exsistent. Ive assumed it was from the oxygen and there weren’t any solutions.

      • #14932
        ronald cole
        Participant

        I have had a remarked change in my voice. It almost sounds like I am weak all the time.
        Yes! I have a raspy voice also, I live alone so do not talk much, I particularly notice it when I answer the phone. I call it my ” OLD MAN’S VOICE”. LOL, it sounds terrible. I find that with my PH, I have become much more withdrawn, and so speaking is something I do not prefer to do much. I can say that with my PH, I actually like my solitude because when I feel depressed, I do not have to involve anyone else with my attitude or bad personality.

        • #14941
          Brittany Foster
          Keymaster

          Hi ron,
          I can appreciate liking to have some alone time when I am upset or depressed but I also know from my own experiences that it’s kind of a double edge sword and you end up relying on your own willpower to pull you out of it. What do you do to take care of your mental health on days like this? Do you find that reaching out to others like on an online community can be helpful and comforting? It is for me!

    • #14322
      Kathleen Sheffer
      Participant

      Brittany, it makes sense to me that your constricted airways affect the quality of your voice.

      Robin, I wonder if your issue with your voice being fainter after not speaking all day has more to do with needing to clear your airways before speaking. Is your voice stronger on days when you use it more?

      I noticed that when I was short of breath I would speak more quietly and mumble more. Speaking tired me out! Since my heart-lung transplant, I have been able to speak louder and annunciate better. Public speaking is much easier now, as I wrote about in a blog post a while back.

      Do you find that speaking makes you short of breath? Are some days easier than others?

      • #14333
        Brittany Foster
        Keymaster

        Hey @kathleen-sheffer I have definitely noticed that it makes me more short of breath especially because I’m not breathing as much in between talking during a conversation. I have been on a pulse ox in the doctors office while they checked this and they noticed that my oxygen levels dropped when I held a conversation with them. It was very interesting to see this happen because I wasn’t sure exactly why it was going on. After seeing the data, it made more sense to me! I have done some public speaking and am wiped out after it lol! Good for you for getting that voice back girl and using it to speak up about what is important!

    • #14330
      VK
      Participant

      I have had trouble speaking too for many reasons… one is a paralyzed vocal cord (complication of heart surgery) and the other is insufficient lung capacity.

      A more recent surgery partially corrected the vocal cord (couldn’t bring it back to life but did move it to the middle where the other one could bounce off it). That part was very important because I teach college classes.

      My speech therapist is unfamiliar with lung disease so has a hard time understanding why I can only hold a note for 6-8 seconds (normal is 10-15).

      • #14334
        Brittany Foster
        Keymaster

        Hey vK,
        I can sympathize with the reduced lung capacity. They checked my vocal cords at one point for the same reason (risk of paralysis with open heart) they looked okay. At this point they found that i had GERD. My esophogus is also constricted so this must effect it too I’m sure!

    • #14331
      Rosemary Martin
      Participant

      i have attributed my sometimes Lauren Bacall voice to inhaler and nebulizer use. It is not always there but it can come and go.

      • #14335
        Brittany Foster
        Keymaster

        Hey Rosemary,
        Mine can come and go too. When it gets raspy it actually sounds kind of sexy hahahaha. Not like my usual voice !

    • #14340
      Jen Cueva
      Keymaster

      Funny, y’all mention this symptom, I get this off and on, my voice goes hoarse and raspy ,my hubby calls
      it the “PH” voice, my past PH doc and my current PH doc agree it’s common in many PHers, reasoning unknown, but I think it’s related to air constriction , low O2 , and meds, so probably a combination. I’ve had it off and on the last few years .

      LOL @brittany-foster, our “sexy “ voice sounds better , lol

    • #14342
      Brittany Foster
      Keymaster

      I believe it is related to these things too Jen. I get it off and on but definitely more after talking for an extended amount of time. It feels more strained for sure !

    • #14343
      Jen Cueva
      Keymaster

      Kathleen,
      Awesome , you get your voice back. You use it in so many positive ways!

      Prior to PH, I would have never guessed that just talking , even carrying a short conversation,or eating would wear someone out, but definitely will…

      • #14345
        Brittany Foster
        Keymaster

        Eating is also another time where I notice shortness in breath ! It amazes me what I once took for granted before my symptoms starting getting worse !

    • #14346
      Jen Cueva
      Keymaster

      So very true…I worked in Hospice and thought I was well versed in not taking things granted ….but when PH hit, it definitely reminds me of so many things we take for granted every day…

    • #14377
      Carol Volckmann
      Participant

      Hi all – Over the last year I have noticed my voice gets very horse and I keep trying to clear my throat. I was diagnosed with PAH caused by Scleroderma 9 years ago. After reading your comments I will definately check this out with my medical team. Thank you.

      • #14380
        Brittany Foster
        Keymaster

        Carol, I feel the same way that I have to keep clearing my throat as if there is something in it. It feels pretty tight around my throat after talking for any length of time too. It’s like a workout to hold a conversation some days!

    • #14383
      Carol Volckmann
      Participant

      Hi Brittany, have you talked with your doctors and have they made any suggestions? I have an appt. with Cardiologist and Pulmonologist in Nov. and will follow up to see if something might help.

      • #14384
        Brittany Foster
        Keymaster

        Hi Carol,
        they have noticed it. My doctor thinks that it’s reactive airways and they constrict when something triggers it like my oxygen levels being low. They also have tested oxygen levels while I’m talking and when I turn my oxygen up to 4 liters, it actually helps my airways relax. So I use my o2 when I’m holding a longer conversation and make sure to turn it up and I take breaks when I need to.

    • #14385
      Carol Volckmann
      Participant

      Thank you Brittany, I will definitely check with my doctors. You were very helpful. I am not on O2 and hope I can still get along without. My 6-min walks have been consistent and pretty good. I am on subcutaneous remodulin, Letairis, and Adcirca and have been pretty stable for the last few years – still hoping to get on the implantable pump asap. Thanks again.

      • #14397
        Brittany Foster
        Keymaster

        You’re welcome Carol! Definitely bring this up to your doctor especially if it is something that has been bothering you. Keep us updated 🙂

    • #14386
      Anonymous
      Inactive

      I actually have Sjogrens in addition to PAH and additional AI issues. I frequently have difficulty speaking initially due to sjogren’s dry mouth. And I believe this condition has been exacerbated by all of the meds I’m on which all have a side effect of dry mouth. I will sound hoarse, my voice will crack but I’m used to it by now. I find this issue is worst in the morning when I first wake up and after a period when I haven’t spoken in a while. I also had my deviated septum fixed earlier this year. I have chronic sinus congestion which caused me to mouth breathe a lot. Now that my nose is fixed I can breathe through my nose even when I’m congested. Not mouth breathing helped to reduce exacerbating the dry mouth.

      • #14387
        Kathleen Sheffer
        Participant

        That’s good to hear. I’m glad you have been able to identify what exacerbates your condition and make some changes to alleviate it.

        I was a mouth-breather when I had PH (before my transplant). I think most of that was due to not being able to get enough air through my nose (partially due to medications that made me stuffy). I would wake up with the same symptoms you’re describing – hoarse, dry, etc. Per-transplant, I wish I had known how important it was to do breathing exercises to strengthen my diaphragm and breathe more through my nose. It’s been super helpful to do so over the last couple years.

        Do you do anything to moisten your throat in the morning?

    • #14388
      Jen Cueva
      Keymaster

      Great points, and glad some of you have shared your tips.

      I, too, tend to use my oxygen if I’m talking a lot , I think it does help.

      As I said I believe it’s a combination of airway constriction as well as the many diuretics I take as well as some other meds that cause dry month .

      Sarah, I definitely imagine you have to have tips to help as you suffer from Sjogrens , I’m sure that makes it even worse for you. What have you found that helps?

      I also tend to be a mouth breather more often and know this doesn’t help either. I’ve used the mouthwashes for dry mouth , Biotene and I forget the other brand . I often find I have to moisten my mouth with water , I will swish around water and/or ice to help with the dryness .

      • #14398
        Brittany Foster
        Keymaster

        Thank you for these tips Jen! I know they will be helpful for those that breathe through their mouth. Luckily my nose doesn’t get congested because when it does it is SOOOO difficult for me to get any air through my mouth. When I mouth breathe when I’m congested it makes me super dizzy ! Hoping to stay a nose breather for awhile! lol! Thanks again for the advice on what you use to help with this though.

    • #14402
      ronald cole
      Participant

      Hello, Yes I have noticed an “OLD MAN VOICE” RESPEY. I never really understood exactly why.
      I read everyone’s post and I have it also. I guess it is just lack of Oxygen like Brittney says.
      It’s the least of my problems, I have so many life issues, along with PH, sometimes I don’t know when to start. My home health care Nurse sent out a Hospice evaluator, went through that. The result was it’s up to me. I talked to my PH Doctor, he said no, just told me he would let me know and we would make that decision together. I would like to feel more connected here, I am all alone here in Texas, no family, my two daughters do not care, I have made so many attempts, I came from the most insensitive, dysfunctional family in existence. That is why I am so spiritual, God is the one who is always there and won’t let me down. DSorry, just depressed today. Love you all.Ron Cole

      • #14404
        Brittany Foster
        Keymaster

        Hi Ron,
        I’m sorry you are feeling depressed today. I have my days where I am feeling like that too. Just know that you always have the support from those of us on the forums and you can always reach out here to people who understand. I wish your family was able to be more supportive of you. Are you able to attend any support groups or PH groups in your area? Have you looked this up? Might be a good way to meet people like us ! In the meantime, it helps me when I am honest about my emotions and type it out to whoever listens so if you need to do that in a safe space here you can. Thinking of you! Sending you positivity ! I’m glad you have a strong faith and that it helps you to hold onto some type of hope.

    • #14403
      Lorraine Wilkerson
      Participant

      Hello from the UK. My main reason for contributing to this forum is that I was so surprised when I turned on my emails and found this subject, not an hour after I had asked my husband if he had noticed a change in my voice. I described it to him as a sudden fading of my voice which became hoarse and raspy. He agreed he had noticed but neither of us thought for one minute that it might be due to my CTEPH. I had actually thought it may be due to my Parkinson’s Disease, but I shall certainly bring the subject to the attention of my physicians next time I attend Papworth Hospital. Thank you for so many interesting contributions and for such fortuitous timing.
      Secondly I do not feel I can contribute to the above without referring to the preceding contribution. Ron, I am so sorry you feel so down and have felt that some of the important people in your life were not supportive of you.I can understand that you may feel hurt and isolated, especially when you are not well.Just know that you are in my thoughts and I hope that things feel a little easier for you now.

      • #14405
        Brittany Foster
        Keymaster

        Hi Lorraine,
        Thank you for the kind words to Ron. I’m sure they are much appreciated. it’s nice for members to know they are not alone and are supported even if it’s virtually !

        In regards to the voice changes, I hope that you are able to talk about this with your doctor on your next visit. From what you wrote I can tell that you have other conditions that may be contributing to it too, but it definitely could be something worth mentioning! I started noticing mine as of a few years ago and it just seems to be getting worse and more raspy but it goes away with the oxygen use. Our bodies certainly go through a lot of changes!

    • #14406
      Carol Volckmann
      Participant

      Hi Ron,
      So sorry you are going through this alone- Lorraine had really good advice to seek out a PH group or another support group in your area. If you do not know of one, ask your health care nurse or your doctor. Brittany also had a good idea when she is down, she writes it all out. Ron there sre folks out there that will help, and as Brittany said just reach out to this forum – we are there for each other!Sending you a big HUG!

      • #14419
        Brittany Foster
        Keymaster

        Thank you for this support Carol! It helps to know others are there ! 🙂

    • #14417
      Jen Cueva
      Keymaster

      Hi Ron,
      Sorry you feeling so depressed, definitely know you are not alone, we all have those days. I hate to hear that your loved ones aren’t supportive, I hope this improves, as we all need support. Just know you can always find support on the forums.

      I am also in Texas, so I know there are many support groups throughout the state. If you feel comfortable, to tell me the area, maybe I’ll be able to help you find a group or PHriends near you , if you want. Otherwise, you can go to the PHA website and look under the patient tab to find a group near you .

      It looks like you’ve already received some great support here. I am happy to hear your Faith is getting you through the days.

      I am in awe at the support here, just this one post and the new PHriends jump tight in! Thank you Lorraine, VK, Carol, and Brittany I’m sure everyone has felt the support here.

      As far as the voice issue, maybe everyone can come back and post updates as they asked their doctors, I asked both of my PH Docs, previous one was Pulmonary, current one is Cardiologist, and both just attributed to PH, so I’m interested in your answers as well .

      • #14420
        Brittany Foster
        Keymaster

        Jen
        I definitely would be interested to have others ask their doctors and hear more about their reasoning behind this! It makes sense that with a lung condition our voice might become more strained. Kind of how smokers develop a “smokers” voice after strain on their lungs and COPD. Not comparing our disease to smoking, but you get what I mean!

    • #14486
      Lea A George
      Participant

      Hi everyone,
      I am a frequent reader but first time poster.

      Oddly enough my very first symptom that I had PH was a hoarse voice. I literally just woke up one morning and my voice was almost gone. I didn’t think much of it except that maybe i was getting the start of a cold. My coworkers were immediately alarmed and recommended getting checked. After 3 weeks of putting up with the hoarse voice and feeling like there was a constant lump in my throat i went to my family doc. Of course it was assumed i was getting a cold or having symptoms of acid reflux due to my described symptoms. Looking back i felt like i was being choked from the inside like someone always had a firm grip around my esophagus but instead i described it to my doc as a frog in my throat i couldn’t clear. I think if i could have expressed my problem better maybe they would not have focused on me having acid reflux for so long. I had no shortness of breath at that point. After seeing an ENT doc he confirmed i had a paralyzed left vocal cord but had no reason for it. He just called it idiopathic and left it at that. Then the other symptoms of PH started-extreme SOB, faintness and fatigue. A CT scan finally found my pulmonary artery was highly enlarged and pressing against my left vocal cord nerve. Because there was such a high pressure in my pulmonary artery it had cut off blood flow and compressed the laryngeal nerve and left my left vocal cord paralyzed. I have researched online and there is actually a name for this condition called Ortner’s syndrome. I haven’t been officially diagnosed with this as my ENT specialist and PH specialist have never made this connection. They are all amazing docs but dont seem to work together or understand each others worlds. For me, however, I certain my PH caused my vocal cord paralysis. It is also so interesting to me how the whole body is tied together. As PH patients we can have a hoarse voice for many reasons like you have all mentioned above but i wanted to throw my story out there.

      • #14488
        Kathleen Sheffer
        Participant

        Wow, thank you so much for sharing. The body is fascinating, and there’s so many links we don’t always recognize – something I learn more and more every day with transplanted organs. Has your PH treatment helped with the vocal cord paralysis?

      • #14494
        Brittany Foster
        Keymaster

        Hi Lea,
        Thank you for sharing this story with us. I know the feeling all too well. I actually had a flare up of coughing and reactive airways to the point where it felt like I was being choked. They did a vocal cord check and my vocal cords were working okay! Similar to a vascular issue causing compression though, I have an anomoly of the aorta it is right sided and gies behind my esophagus and actually presses on it. Sometimes I feel like I have a lump in my throat after swallowing or eating. After hearing your story I’m thinking it would be a good idea to see an ENT. This issue has also given me reflux over the years which can become painful! I’m glad they ended up finding the connection for you and like Kathleen I’m curious if this symptom improved for you and how it did?

    • #14512
      Jen Cueva
      Keymaster

      Wow Lea,
      Thanks for sharing your experiences.

      I know there are many reasons we tend to have these changes in our voices, I would have never been thought about issues with pressing our vocal cords but makes sense.

      I’m with Kathleen and Brittany as I would like to hear if you’ve noticed any changes with treatments.

      Brittany and Lea, an ENT could be a great resource for some of us , so great tip and something I’ve never been suggested .

      • #14522
        Brittany Foster
        Keymaster

        Next time I see my primary care doctor I will have to ask her who she recommends for an ENT ! I saw one when I was a child and not sure exactly why I did. But I do have reflux so I would be interested in knowing what they have to say. It seems like “another doctor to add to the list” but even irritation of the throat could contribute to coughing fits. I’ll keep everyone updated.

    • #14915
      Lea A George
      Participant

      Sorry for the delayed response. To answer the question did I notice an improvement in my voice after receiving treatment- yes I did!! I started on meds mid September and my voice spontaneously returned the beginning of January. It has been completely stable since. I have been to see my ENT a few times since then and my left vocal cord is still paralyzed. Once a vocal cord is paralyzed for more than a year it can never come back (according to the ENT) The doc figures my right vocal cord just compensated for the left which is why my voice has returned but i believe its due to the treatment reducing the pressures. I was on a list for surgery to receive a laryngoplasty but he cancelled the surgery as it’s no longer needed. My next appt. With the ENT is in January and I am still hopefull i will see improvement in the vocal cord or it might move. They say not possible but I choose to have hope.i still worry my voice will go again if/when my PAH worsens but the ENT says it won’t and now that my voice is back its here to stay. He doesnt seem to understand this condition at all so I’m not sure what to believe. I wish all the doctors could work together if diagnosed with a condition because as Kathleen said the body is an amazing thing and all tied together.

      • #14916
        Kathleen Sheffer
        Participant

        Definitely hold out hope! Our bodies can do amazing things and doctors can rarely be certain about anything. My friend @brad-dell’s doctors told him his kidney function would never improve, but this month his function returned to normal range for the first time since his lung transplant!

        Maybe you can ask your PH specialist to chat with your ENT and confirm what the ENT claims? I would like to believe that your voice is here to stay!

      • #14929
        Brittany Foster
        Keymaster

        Hey Lea,.i can u understand the frustration that you must be going through. I know it’s hard when you want something fixed. What symptoms are you experiencing besided the changes in the voice? See if your pulmonary doctor can fax over some information and even look online for some credible sources about voice changes and Ph. It’s always best when they have some info beforr so they feel more confident treating you!

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