This topic contains 44 replies, has 8 voices, and was last updated by  Jen Cueva 2 months, 3 weeks ago.

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  • #17914
     Brittany Foster 
    Keymaster

    Cyanosis is when the lips, hands, or toes turn blue. For me, this seems to happen when I am exerting myself. On exertion my oygen levels drop and this bluish coloring to the skin can be a sign of hypoxia. There are many of my PHriends who also have this symptom of turning the blue or very pale color when their oxygen is low or when the body isn’t getting proper bloodflow and oxygen to the periphery of the body.

    Here is a link talking about PH and hypoxia (low oxygen levels) .

    When I notice myself getting cyanotic I either go for my oxygen, take a rest, or do both to help with this. This is something that is a common occurrence for me and something that my doctors are aware of and are okay with me monitoring on my own. I usually know when it needs further attention.

    Do you ever experience the symptom of cyanosis or getting very pale because of lack of blood flow or oxygen? Is it caused by this lack of oxygen for you or is it caused by something else? Is this something you have discussed with your doctor?

  • #17915
     Colleen Steele 
    Keymaster

    Sometimes my son’s lips would look a bit on the bluish side but usually his would go a very, very deep red and his lips would swell when his oxygen dipped or he was having other symptoms. Just like you it was often a tell that we needed to monitor him because when his coloring changed, if he wasn’t already having issues, he was about to. I did notice when his heart failure progressed his lips would often look very pale. It’s sad but also interesting how are bodies give us visual hints when something isn’t right, sometimes before we even feel sick.

    • #17931
       Brittany Foster 
      Keymaster

      Colleen,
      That is very interesting about his visual changes in his coloring. When I played sports, before they realized what was going on with my shortness of breath and oxygen levels they would tell me that I was almost like a plum color. I have pictures of myself skating and all I can think is, “why didn’t I notice these things before?” For me, I was always short of breath but it was diagnosed as “exercise asthma” for years of playing sports and coming off the field or ice a completely different coloring or the reddest red that it almost looked purple. It is something that I spread awareness about for the younger generation and the importance of testing oxygen levels on exertion when patients complain of shortness of breath.

      • #18023
         Colleen Steele 
        Keymaster

        Brittany, my son played sports before diagnosis too and it was how we became suspicious that something was wrong. If he didn’t play sports it might have taken us longer to realize his health problems. I cover this part of his story a little in my article coming out next Monday.

        Only because I have Long Q-T Syndrome I was concerned that my son had it too and that was what was causing his symptoms. Sure enough, he had long Q-T, much worse than mine and so we had to pull him out of sports. Breathing problems increased and he was diagnosed with asthma…which later we found out he didn’t have, at all. Long Q-T can cause sudden death so it was important that he was diagnosed and pulled out of sports but I wonder, if he had stayed active if the PH would have been found sooner. When he played sports his coloring was bazaar and as with your experience, I wonder now how I didn’t figure out that it wasn’t normal.

        You mentioned that almost immediately after your recent surgery you noticed better coloring in yourself, especially your lips. That was my son after transplant. When I got to see him after surgery for the first time I gasped because already his coloring was so much better.

      • #18042
         Brittany Foster 
        Keymaster

        Colleen,
        Like you, my mom also wonders about these things. She sometimes wonders about sports and everything out loud. After everything was diagnosed correctly for me, my doctors will comment and say “it is a miracle that you were able to get through sports for all those years” . I think back to the times playing ice hockey and honestly have to throw up a “thank you” to whoever is listening up there because I do NOT know how I made it through some games where I would pass out afterwards and lose consciousness sometimes. It’s so scary because I KEPT GOING even when I knew my body was telling me to stop.

        I was also diagnosed as having “asthma” for so long. Inhaler after inhaler just never worked for me. My pulmonologist now even says “you don’t have asthma”. I just hope that future generations will get a quicker diagnosis and don’t just push through it like I did for all those years.

        The color is definitely something that I noticed a difference in after the surgery. Especially the coloring around my eyes. Under my eyes would get like a purple/ bluish color and now it isn’t as bad as it was before my surgery ! I don’t look like a vampire anymore (not as bad anyways) lol!

  • #17925
     Jen Cueva 
    Participant

    Yes, I do get cyanosis at times due to my PH. I have had it off and on since I was diagnosed (actually before). I have discussed this symptom with my PH doctors and they are aware as this is an ongoing issue.

    My cyanosis presents itself at times by pale grey or bluish lips, fingertips, toes, feet and even around my knees at times. Most often it occurs when I’ve overexerted myself or having a “ PH Crisis”. When this happens, I rest, turn up the O2, or put it on and it usually subsides after a bit.

    I’ve heard many PHriends discuss cyanosis as a symptom of their PH as well. I was told by several doctors that when these cyanotic episodes happen, we may not see a low O2 saturation. We can have cyanosis even if our oxygen saturation is within our norm, it may be due to the lack of blood flow( circulation), although the oxygen is in our bodies, it’s just not getting to the areas it needs to. I hope I wrote this to make sense to y’all.

    Thanks for the link and great topic, Brittany.

    • #17933
       Brittany Foster 
      Keymaster

      Jen,
      OMG I also get this around my knees too and it looks like mottled skin (like red or purplish circles) on my lower extremities. I had an exercise test where they tested the circulation and blood flow to the lower half of my body and the pressured actually dropped significantly which signaled them to think that my circulation and blood flow was just poor to the extremities. They gave me a scan like a CT scan when they first found this to make sure there wasn’t anything structurally preventing the blood flow from getting there but it was just general circulation too. And you’re right, even if our oxygen levels test as okay, there still is that limited blood flow that can lead to a lot of our symptoms for sure!

  • #17941
     Valerie 
    Participant

    Hi all!
    Oh, yes, cyanosis haunts me always. I think I have it all my life (at least all my CONSCIOUS life). The fact that it is called “cyanosis”, I found out by accident, reading the entry in my card after visiting a therapist. Usually doctors don’t call it anything, just take my hand, look at my nails, nod and sigh. I keep getting told I have purple lips and purple nails. Personally I think it’s normal pale-pink color of, but I, perhaps, simply trained. I have pale skin and I avoid sunburn, so cyanosis is noticeable better.

    • #17946
       Colleen Steele 
      Keymaster

      Valerie, there is so much medical speak to learn when you have a disease like PH. Words like “cyanosis” took me a while to pick up on too. A lot of times during hospital rounds I would make notes of words I would hear the team use that I didn’t know, then look them up.

      It’s funny that you mention how you think your coloring looks normal because my son would often say that about himself too. I would ask him if he was ok because his coloring looked off. He would look in the mirror and tell me I’m imagining things.

    • #17955
       Jen Cueva 
      Participant

      Valeria, I had to laugh when I read about you thinking that your color is normal, when my hubby tells me that my color “ is off”, I tell him it’s just my usual color minus makeup. I have a pale complexion as well.

      As Colleen says, often medical staff use terms we may not know. Keeping a list or even asking them if you’re unsure helps you to be educated on your personal health.

    • #17959
       Brittany Foster 
      Keymaster

      Jen and Colleen,
      I like your idea about keeping a notebook to keep track of the terms you might not be familiar with. That’s a really good tip for those wanting to advocate some more and feel like that have some control in their healthcare. Usually I used to take more of a back seat to my health and would just not at what the doctors were saying without asking many questions or clarification. My fertility specialist is great at making sure I understand things. before every surgery I had done with him for my tubes and ovaries he would tell me, “okay now repeat everything I just said in your own words so I can check for your understanding of what’s going on.” It caught me off guard because I never had a doctor do that but it was such good practice !

      Valerie, I know exactly what you mean by feeling like it’s normal for you. As I mentioned before, I thought many of my symptoms including the shortness of breath and tightness in my neck and throat were “normal” it’s only until it’s brought to our attention that it’s not a normal feeling or that it’s related to a condition that we start actually noticing these things and being more aware of them. At least that’s how it is for me anyways. I go around thinking everything is “normal” until I get told otherwise

      • #18024
         Colleen Steele 
        Keymaster

        Brittany, I wish more doctors would do the “repeat back to me,” way of making sure their patients understand what they are being told. I have only known one doctor to do this and that is my son’s Pulmonary/Transplant doctor. I’ve heard her do it several times but always before a bronchoscopy. She will ask him to repeat back to her what the risks of the procedure are and I know he’s not fond of the practice but it’s been a good way to keep him more responsive about his health care. She has also tripped him up a few times which led to more discussion so it’s really a helpful practice if only more doctors would do this.

        Valerie, it is so true about symptoms becoming the normal and harder to identify. I can remember appointments when my son expressed that he was doing well, no problems. By the end of the appointment it would be determined that maybe he wasn’t doing as well as he thought. His PH doctor said to him a number of times, “I think you are just so use to feeling this way that you are no longer as aware that you are having problems.”

      • #18035
         Brittany Foster 
        Keymaster

        Coleen,
        I can fully relate. Yesterday I was at a lot of appointments during the day and I went into my primary care office without my oxygen and feeling way over confident in myself. I have been so used to the low oxygen levels in my body that I feel like I just adapted to it and my body adapted to it. My levels were 85 in the office and let’s just say that she wasn’t impressed that I didn’t have my oxygen with me. I was honestly getting so used to it being low that I started to just adjust to the symptoms I was getting. When it gets too low I am very light headed and will use the oxygen as needed.

      • #18046
         Colleen Steele 
        Keymaster

        Brittany, what you experienced at your appointment sounds familiar. Just trying to convince my son to start using oxygen was a challenge. I remember the heated conversation he had with his doctor as he insisted that he was surviving just fine without supplemental oxygen. Let’s just say, the doctor one the argument. To his surprise he felt so much better while using it, imagine that!

      • #18048
         Brittany Foster 
        Keymaster

        I definitely notice the benefits of using oxygen therapy and fully admit that it helps me so much with my energy level. Less headaches, better focus, just over all better health it seems like. Wearing it out with my friends I make choices in wearing it or not (if I’m really feeling that bad I usually am not going to be going out at all). But I totally get where your son’s argument was trying to come from. Arguing with my primary care doctor about it would have been a battle that I knew i was going to lose. She gave me brutal honestly when she said “your body is going to run out of any energy that it has” . I felt that . lol. Truth hurts, but sometimes it’s necessary and they can’t just “take it easy on me” because I’ll get the inch and take a mile.

      • #18052
         Jen Cueva 
        Participant

        I can relate to you Brittany as far as needing someone to be brutally honest, at times, like you, I tend to “take that inch and get the extra mile”.

        My hubby is usually this person as well as my PH Doctor, it’s often after Ive pushed myself too far. I hate to admit, by this time, I usually need it! Shh..don”t tell them that!

        As far as wearing the oxygen, I can relate to your son, Colleen as well as Brittany! When I think I am doing “alright”, I often will go without my O2. I know I am better now, but still guilty of this at times.It is pretty silly on my part as I know if I JUST wear it, I will feel better.

        I also usually have horrible headaches, lightheaded, dizziness when I need to be wearing it.

      • #18073
         Brittany Foster 
        Keymaster

        Jen,
        I get the dizziness and headaches too. Our body has all these ways of alerting us when it needs that brutal reminder. If I’m not getting a lecture by some of my doctors, it feels like a get a heck of a “talking to” by my own body. Especially on the days I feel well and want to be more active. Sometimes i overdo it !

      • #18087
         Jen Cueva 
        Participant

        Yes, Brittany, if it isn’t the doctors (or my hubby for me, too)our bodies definitely will let us know. Our bodies tend to lecture us in other ways like the symptoms we experience.

        It is often easy to overexert ourselves. I am sure post surgery for you it is even easier to do. Be sure you are giving yourself a little more time. You’ve been rough so much!

  • #17991
     Valerie 
    Participant

    Colleen, it’s really good advice to write down unfamiliar words and ask about it then. The problem with my doctors is they don’t say anything, lol.
    Jen, you and the son of Colleen as same as I, lol. We are used to the color that others see as “purple”. I liked the way you say “usual color minus makeup.”
    Brittany, you mentioned something very important. Indeed, we can get used to something and consider it normal, although in fact it is not normal, and we have no idea about it.

    • #18006
       Brittany Foster 
      Keymaster

      Exactly ! I’m glad you are able to connect with what I’m saying, but it is tough that you had to go through that and experience those things that are “normal” for us but abnormal for anyone else living in our body or seeing things from the outside. Like my lips being really pale white or like a bluish color. Those are things that I don’t get too alarmed about but people see me and say “looks like you’re turning into a smurf” lol gotta keep the humor !

      • #18020
         Jen Cueva 
        Participant

        Hehe Brittany…”you’re turning into a smurf”, definitely keep that humor!

        It seems that we tend to get accustomed to these things as y’all mention and these things can be very concerning to those that are around us. I know my hubby usually notices my color changes before I do. It’s funny, I often feel like a chameleon, hehe ( Not just anyone can do that, LOL )

      • #18034
         Valerie 
        Participant

        Turning into a Smurf is a great idea, lol. When my limbs turn pale and cold, and someone points it out to me, I joke: “I’m a vampire, do you want me to bite you?”
        It’s great that you all try to keep a sense of humor in these difficult situations. Thank you all for sharing with me!

      • #18036
         Brittany Foster 
        Keymaster

        Valerie !
        Love the vampire comment haha! Some days I feel like an actual real life vampire in need of blood flow and circulation. Under my eyes gets very bluish purple when this happens and I swear I look like I am a character from the Twilight series haha! Have to keep some sense of humor or life would feel too difficult.

      • #18043
         Brittany Foster 
        Keymaster

        Jen,
        EXACTLY!! I try to convince my medical team that these are my super powers… I don’t think they’re as impressed a I am lol!! Gotta keep this sense of humor alive somehow. Luckily for me, mostly all my doctors have the same sense of humor as me (some are a little serious but it’s a good balance of the ones who keep me grounded and the ones that keep me laughing)

      • #18053
         Jen Cueva 
        Participant

        Hehe Brittany, yes, I am lucky to have some serious doctors and a few with that sense of humor, so it is a good balance. We definitely need to keep some sense of humor along with our Superpowers, Hehe

  • #18007
     Robin Webster 
    Participant

    I do notice the blue fingernails sometimes. Usually that is my signal way before I even realize that I feel short of breath or anything. For a few years before I was diagnosed, the lower half of my legs looked as if I had been sunburned with a pair of ankle socks on. Very strange. People often remarked on it, and it embarrassed me, but I had no idea what had caused it.

    • #18009
       Brittany Foster 
      Keymaster

      That’s interesting that you say that about your feet and lower part of your legs. From poor circulation my feet and lower half of my legs go from red red to a pale or bluish color. My fingernails also get really pale to the point where if you press on the nailbed it doesn’t have good capillary refill (this is usually something the doctors will check too when they look at the hands or nails). you can test this but squeezing your finger tip and seeing how fast you regain color into it or pressing down on the nail bed and seeing how quickly it goes back to its original color after pressing it. Have you ever done that self test before to check for circulation in your hands/feet? It’s something I do to test my levels when I don’t have my oxygen sensor handy. What do you do to relieve yourself of the redness, or does it just go away on its own?

  • #18109
     DAVID PETERSON 
    Participant

    Yes, but when my oxygen is low and I do have Raynaud’s syndrome

    • #18111
       Jen Cueva 
      Participant

      Hi David! That’s often an issue, especially with the Raynaud’s. Do you have a pulse oximeter to check your oxygen levels so that you will know when it may be an issue? Or, do you just go by symptoms?

    • #18121
       Brittany Foster 
      Keymaster

      Hi David ,
      I know that for some with Raynauds it’s also difficult to get an accurate pulse ox reading. Sometimes the doctors will use a sensor that goes on the ear to check for a more accurate reading. Is this how the docs or you check your own oxygen levels or do you get an accurate reading just using a pulse ox? To see if the pulse ox is accurate, I usually look at what the pulse reading is. If it matches up to my actual heart rate then I trust what it says for a reading. Do your hands turn bright red with the raynauds ? Some people turn blue, white AND red!

      • #18127
         Jen Cueva 
        Participant

        Brittany, so true! I had forgot about those ear oxygen monitors. Have they ever used them on you ? I’ve had them use one on me during a six minute walk once. I don’t have Raynaud’s, but they did mention that prior to my PH diagnosis. Later they agreed it was “ just the PH”.

  • #18605
     Libby 
    Participant

    I get purple feet and knees! And those little red circles you mentioned Brittany, sort of blotchy-like.

    • #18611
       Jen Cueva 
      Participant

      Libby, have you found any tips to help when this happens? I know that massaging the area can help, Movement also may help with the blood circulation.

  • #18609
     Ally 
    Participant

    Yes and it’s getting worse my O2 hovers at 89 even with an ABG

    • #18612
       Jen Cueva 
      Participant

      Sorry that you’re dealing with this too, Ally. I’m guessing that you are using oxygen (O2) to help your oxygen levels.

      Ouch…just reading ABG makes my wrist sore, lol

    • #18620
       Brittany Foster 
      Keymaster

      These types of noticeable symptoms get worse for me too. I make sure to take hot baths at night when I can, I try to avoid extreme temperatures and usually would rather stay indoors if it’s too hot to avoid triggers that would potentially make my oxygen even lower. I know that my heart is already being overworked and it just doesn’t need any more stress. And Libby, for your comment, YES it does look like blotchy spots. This is the mottled skin look that I get all over my arms and sometimes around my mouth and face too like around my chin I get these little tiny almost like goosebumps bumps when I am low on oxygen or am getting that “blue” color.

      • #18645
         Jen Cueva 
        Participant

        Oh, I like warm baths and soaks at night.

        The splotchy spots can be caused by a variety of things.

        Great tips, Brittany.

        Here is a little bit of information for those who may want to check it out.

      • #18646
         Brittany Foster 
        Keymaster

        Thanks so much for the great info, Jen! You’re always such a great resource and wealth of information ! So glad to have you here 🙂 hope you are doing okay today and that your pain is getting controlled better. TAKE IT EASY

      • #18654
         Jen Cueva 
        Participant

        Thanks, Brittany. I appreciate all of the information and support that I receive here in the forums. I try and pay it forward in a way as I share my information with others with PH. Hopefully, others can learn from my posts.

        Currently in ” take it easy ” mode, lol

      • #18658
         Brittany Foster 
        Keymaster

        Jen,
        ALL of us need a reminder to go into “take it easy mode” sometimes! It is a huge part of self care but one that is much easier said than done!

      • #18662
         Jen Cueva 
        Participant

        True, Brittany! Telling others to take it easy is much easier than reminding ourselves that. Self-care is important and something that I’m always working on to improve.

      • #18666
         Brittany Foster 
        Keymaster

        Jen,
        same here! people will tell me to “take it easy” as I’m most definitely doing something that looks like I’m NOT taking it easy LOL! Happens WAYYYY to often.

      • #18697
         Jen Cueva 
        Participant

        Yes, Brittany, the same story here. Do your boyfriend and mom ” remind” you to take it easy? I think our taking it easy maybe isn’t the same as theirs. hehe

      • #18714
         Brittany Foster 
        Keymaster

        Jen,
        My mom is definitely one to remind me WAY more about taking it easy. Guys are way more superficial than women I think. So if I “look okay”, unless I say something and speak up about my symptoms to my boyfriend, he will just assume everything is “fine” and that I can keep up and don’t need to rest. He just takes things for what they appear to be (even though he knows that a lot of this is part of having an invisible illness) but unless I’m really honest about how I’m feeling and doing then he won’t be the one to bring it up.

      • #18722
         Jen Cueva 
        Participant

        Oh, my hubby usually notices too quick when I’m not feeling good. I try and act like, ” all is good” and it never works. I’m sure it’s because I’ve been married so long and he’s been dealing with me with PH from the beginning.

        Since I’m older ( a tad, lol ) and my mom isn’t and hasn’t been my main caregiver. She’s more like your boyfriend and I usually can act ” normal ” and she goes with it, lol

        For her, it takes more visible clues before she starts telling me to sit down and take it easy. She often asks, ” do you have that air on?”, even on the phone.

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