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    • #15489
      Dori Herrick

        Intimacy is an important part of adult lives. PH can bring some awkwardness to the bedroom. My Pulmonary P.A. met with one of the heads of the PHA yesterday to put the final touches on an informational mini-book/pamphlet called “Intimacy and PH”. It will be available in the coming months Not sure if it will be free, but watch for it.
        In the meantime, I thought it would be a good topic to address. Some may not feel comfortable, but we are all adults, so let’s talk about it.
        Some tricks that I have learned: For those on oxygen, running the cannula behind the head can reduce obstruction while making love. For those with a pump, placing it on a bedside shelf or at your side can help.
        What tips or tricks do you have to make PH less awkward in the bedroom?

      • #15493

        Definitely a good topic. Unfortunately it is something I struggle with in the confidence department when thinking that I have to use my oxygen. I admittedly don’t use the oxygen when I have sex but I pay the price for it. It’s more of an issue for me because I struggled a lot with body image in the past and the oxygen added onto that just bothers me. Something that has been helpful though is that I’ve tried more positions that allow me to be laying on my side or more standing or upright positions because I have struggled with being unable to breathe as well when I’m laying flat or on my stomach so I like to stay more propped up!

        • #15495
          Dori Herrick

            Thank you for being brave enough to admit the confidence issue. Most women tend to have self-confidence issues in our youth. Adding oxygen must make it even more awkward. But also remember that your confidence and courage, along with beauty, are what attracts men. If you treat it like no-big-deal, so will your partner.

            The positioning is a very good point to bring up. Most of us with PH have trouble breathing in certain positions. To that, I will add that you can never have too many pillows available to help.

            • #15506

              You’re right Dori,
              I definitely could use some extra confidence and there are so many woman who struggle with this whether they have PH or not. It’s unfortunate that so many of us struggle with being so critical of ourselves but we would never judge someone else with the same lens we judge ourselves ( at least that’s how I am anyways)… And pillows are definitely helpful!!!

        • #15508
          Kathleen Sheffer

            Love this topic! PH significantly impacted my sex life. I didn’t really enjoy sex, but did it because I wanted to have the full experience in my relationships. I kind of thought everyone was crazy for liking it so much. Turns out it’s 1000 times better now that I have healthy organs and circulation.

            Ok, @brittany-foster – WEAR YOUR OXYGEN! OMG. Even when I wasn’t wearing oxygen full time, I put it on for sex. My boyfriend thought it was sexy that I could breathe a bit better. It really doesn’t get in the way as much as you think it will. I was dealing with pump tubing and oxygen tubing and we worked around it easily. My enjoyment of sex was still affected by my shortness of breath so I can’t imagine how much worse it would have been if I hadn’t had oxygen on. Just try it! If I’m wrong and it doesn’t improve anything, take it off, no harm done.

            • #15509

              @kathleen-sheffer girl, you right though! For real, I need to bring this up to someone, I feel like if I attempted to tell my doctor about it he would just be like “well duh you get out of breath and lightheaded if you’re NOT wearing the oxygen.” Honestly can’t even picture myself having talks about sex with him. I would probably turn eight shades of red from embarassment hahaahaha ! It’s not even like my boyfriend would be uncomfortable with it, it’s just my own darn insecurities (on top of already having insecurities with body etc) ohhhh the joys!

              • #15510
                Kathleen Sheffer

                  Yeah, it’s so hard to know who to talk to about this stuff. I’ve made the mistake of trusting nurse practitioners and ended up not getting empathetic answers to my questions. I actually got misinformation, probably in an attempt to steer the conversation elsewhere. Maybe a therapist or social worker would be a better source? It’s been helpful for me to talk to other women, whether they have my condition or not. Sex is usually a little awkward for everyone and it helps to know it’s not just me.

                  It’s tough, though, because even as I write this I’m censoring myself a bit (especially knowing my MOTHER reads our forums sometimes). It’s a topic either for face-to-face where both people can giggle about it or for deep dives into Google searches. Ha!

                  Okay. Fine. Here we go. I would ask your partner to focus on foreplay. This is something you can do together while you’re lying in the most comfortable position possible and wearing oxygen. I have to believe that he kisses you while you have your cannula on (correct me if I’m wrong). If you’re not already, get more comfortable just cuddling and being close while you’re wearing oxygen. Let things escalate and keep it on. If it starts to make you feel self-conscious, take it off. But hopefully you won’t be thinking about the oxygen. The more you can work up to the act of intercourse the better. (I’m grossed out typing this.) Take your time to warm up, get the blood flowing, talk about how much you want each other, and so on…it’ll be easier when you’re ready, and probably require less time physically exerting yourself. Maybe minimizing that time isn’t your goal, but I personally remember just wanting it to stop because I was so tired and exhausted. Yikes. Anyway, my main point – spend the bulk of your time in a comfortable position for you where you’re able to rest and turn each other on.

                  And maybe turn your liter flow up! Just saying.

            • #15517
              Dori Herrick

                @kathleen-sheffer & @brittany-foster
                Thank you both for adding to the conversation and for pointing out the discomfort you feel bringing it up with medical personnel or anyone. Knowing that PH affects more people in their youth and that during our younger years, sex is not a subject we like to address publicly, I do believe that is why the booklet “Intimacy and PH” will be important.
                I have been married for more than 20 years, so my comfort level with this subject is a lot more open, but I still feel myself blushing a little as I type. I think our culture in America is much more quiet about the bedroom than most places.

                • #15524
                  Kathleen Sheffer

                    I am SO looking forward to your booklet! I’d also love to learn more about how you got this process started. There are some topics I believe are not addressed well with patients and I would love to partner with my medical team to create resources for patients. Was this your idea or did your PA approach you for help with the project?

                    • #15529
                      Dori Herrick

                        Just to clarify, my PA was working on it with the PHA for a few years. She did approach me with the subeject last year for additional input. She also knows I am active on this forum and suggested it might be a good topic to bring up. I said it absolutely is something most of us are interested in, but not willing to talk about. From what she shared with me, I believe that their booklet will help fill that void. I will update when I find out how to get a copy.

                      • #15530
                        Kathleen Sheffer

                          Ohhh I misread and thought you met with your PA to put the finishing touches on it! That’s still great – PHA is always creating resources for patients. I am interested in making some resources for heart-lung transplant patients, which is even more of a niche population. I just need to find the time to do so!

                          Love this topic and hope others will chime in if they feel up to discussing. Thanks for bringing it up!

                        • #15532

                          I’d love to hear more about it and would definitely be interested in reading it. I feel like these topics need to be talked about because I know I’m not the only one having insecurities and having difficulty. It can be very frustrating and often sex feels difficult or too intimate to share about. But the more it’s talked about openly the more others can see they aren’t alone on their feelings. When I realize I’m not alone in how I feel it makes it easier to discuss.

                      • #15537

                        So true Dori. There’s so many other topics that like Kathleen is saying aren’t addressed as much. I was involved in a clinical study about the menstrual cycle and PH and it was very eye opening for me. Not only did it make me more in touch with my body, but it also made me more aware of the hormones and reasons why I felt the way I did throughout my cycle. This is also a topic that may he hard for others to talk about openly but I think as a culture we could be more open about this without feeling embarrassed or ashamed.

                    • #15554
                      Brian Gilbert

                        When reading this, I thought PH stood for PentHouse. LOL!! Ok, from a male caregivers perspective, I didn’t care about the o2 line or the Hickman line for her veletri. We definitely had to adjust where pillows were in place to keep her head and chest elevated or in different positions so she could breathe. I was also the one who did most of the ‘work’ so she didn’t have to expend too much energy. Because PH forced us to change up a bit and find new positions and ways to do things, it kept sex exciting. As her disease progressed, her breathing became priority over everything else. PH was definitely the first things on our mind when we woke up and went to bed. I have to say, that’s a mood killer. Needless to say, our sex life dwindled to nothing during her journey to transplant. She was transplanted with heart and lungs on 1/3/19. The road to recovery has begun. We’ve talked about sex prior to transplant and she said it’s one of the many things she’s looking forward to in her post transplant life. I would have to agree with her. : )

                        • #15556

                          Hi Brian,
                          Thank you for sharing your perspective in this. It can be such a hard topic to talk about and even a hard subject to bring up to our partners. I have found that if I dont say anything about how I’m feeling, I can’t leave it up to others and assume that they know my comfort level. Did you find this hard to talk about with her ? Do you have worries that you kept inside too? You’re right that it can kill the “mood” especially if it remains the “elephant in the room”. I hope that post transplant you have many things to look forward to and I’m sure sex and intimacy is on the top of that list of things ! It’s a big factor in relationships but it can be the hardest thing to be completely honest about. Thank you again for your feedback on this and for giving the caregiver perspective.

                          • #15560
                            Brian Gilbert

                              It’s definitely a tough conversation. I didn’t want to make her feel uncomfortable or less of what she was before PH. She’s had enough on her mind with fighting to live. And, it’s not her fault as to why she had PH. It’s tough being the healthy one in the relationship and able to do anything and everything we did before PH while your other half is slowly fading away. Even though I told her I still found her very sexy, and she’d smile, I felt like she didn’t believe me simply because she no longer felt good about herself. I also have to say if PH had come along very early in our relationship that we may not have made it as the odds would’ve been stacked against us (age, sex drive, young relationship, etc.). We’re certainly not out of the woods yet, but we’ve been together for over 18 years now and are 100% committed to each other regardless of what happens. Sex is certainly a part of a healthy relationship, we’re in the ‘under reconstruction’ zone for the moment but I know will come out the other side a stronger couple.

                            • #15561

                              It seems like you are able to keep such a positive attitude and I’m sure that has helped her to stay as strong as she has/does. She is lucky to have you reminding her of how good looking she is. It’s always a huge confidence booster when my boyfriend says that to me even if I don’t have the same confidende in myself. Knowing someone believes in you and belives in the strength of your relationship is a huge reason why many of us continue to push through the struggles. I know you will get all of that and more because your relationship has already been tested in so many ways and it seeme like it has grown through the ups and downs. I admire that a lot.

                            • #15562
                              Brian Gilbert

                                There’s definitely plenty of negative in the world without me adding to it. Staying positive is hard to do on some days, especially if you know sex isn’t going to be an option to help cheer you up. But if you get in a rut of negativity, the longer you stay there, the deeper the hole gets and the harder it is to climb out. Despite what we’re going through, we’ve got way too much to be thankful for to let this and the lack of sex get us down or keep us down. She has a trach in right now and can’t talk so our conversations are all going in my favor. LOL!! I’m taking advantage while I can because when she can talk, I’m going to get an earful….and you know what, I’ll be happy to hear her voice again, even if she’s fussing at me. 🙂 I even joked with her that with the wrist restraints on the hospital bed, the tape, the tubes, etc. we could get kind of kinky but we’d set a safe word up before we started. Because she has the trach and can’t talk, she wouldn’t be able to say the safe word so I could totally have my way with her. That made her smile. : )

                              • #15563

                                I truly appreciate your sense of humor. You seem like you know how to make each other smile and laugh. Personally, having that connection and being able to lighten up even the hardest of situations is what real intimacy is all about. I’m always thankful that my boyfriend is able to provide comic relief in hospitals even though it’s stressful for him.

                            • #15568
                              Dori Herrick


                                It is great to hear from a spouse’s perspective. Sex has dwindled for my husband and I also. But, we have found that a sense-of-humor and the ability to communicate are paramount for a marriage to survive with a chronic disease.
                                I hope that the transplant is the beginning of better times for you.

                                • #15570
                                  Brian Gilbert

                                    I think it’s absolute paramount that we all keep a sense of humor no matter what we’re going through. Unlike George Costanza, I am not getting smarter while not having sex. : )

                                    If you care to follow along with my wife’s transplant journey, I’ve got a story on my blog and I post updates daily on my Facebook page

                                  • #15572

                                    It’s so good to hear how involved you are and how you both use humor in your relationship. It definitely goes a long way and helps my boyfriend and I cope with everything. I’m interested in staying in the loop and following your journey!

                                  • #15574
                                    Brian Gilbert

                                      I think back to when my wife was first diagnosed with IPAH in September of 2013. We scanned the internet for whatever we could find, which was very little other than the doomsday information. I want to contribute when and where I can so others who are newly diagnosed or searching for info on PH aren’t as afraid as we were. Life with PH takes management and organization, but you can have a life.

                                    • #15585

                                      I think it’s very admirable how you are using your experience to help others who are going through something similar. I think its important for patients and caregivers to not lose their zest for life and their desire to keep pushing forward through all the struggle. It is easy to get caught up in everything you read on the internet and there seems to be more bad than good nowadays. It’s good to have a place for hope! I truly appreciate everyone’s contributions 🙂

                                    • #15575
                                      Kathleen Sheffer

                                        Thank you for sharing your blog and all the updates on Facebook. I’m following closely. Love you both.

                                      • #15583
                                        Brian Gilbert

                                          @kathleen-sheffer, you’ve been a HUGE inspiration during this process. Out of probably 100 people or so we’ve met through the lung transplant program here at Duke (in person and online), most are IPF or CF while only two others were transplanted due to PH. Further proof that PH is rare. 🙂

                                    • #15603

                                        I have had PAH for a few years now. In doing research on this disease I found the vast majority of patients are female. I’m a male so already an oddball, but Im not worried about fitting in lol.

                                        My case started up a couple years after mitral valve replacement. Supposedly this is secondary to left heart disease. As for physical condition I am in great shape, work out regular and am very acive despite the fatigue.

                                        Anyway- I have severe PAH (at least that’s what my cardiologist calls it)and I frequently am short of breath but do manage to go to the gym regularly and as of this time I am on no meds for this nor am I on O2. That said….this thread got my attention.

                                        First of all ladies…don’t worry so much about attractiveness or whatever worries you have about you thinking your man may not be attracted to you or whatever. Believe me, just you wanting them is pretty much enough to overcome other stuff. That is probably easier said than done though so I get that.

                                        As a man who has a pretty good drive most of the time, this PAH thing is absolutley destroying my/our sex life as the months go by. It has deteriorated quite a bit in the past two years. As you may imagine, not being able to breathe re-distributes oxygen/blood to other parts of the body that my brian believes to be more important. No matter what I want so this has created quite the situation.

                                        My cardiologist wont prescribe revatio to help with this and my PAH as he feels I am not bad enough YET. I dont know if I should see a pulmonologist or what. I understand eventually this will deteriorate to the point that sex or even getting an erection is probably out of the question. Until then I am trying to fight this the best I can, but the wife is growing tired of it all. Lots of excuses now. Likely she is trying to save the last bits of dignity and “manhood” I have left, but rejecton is much worse.

                                        Anyway- was curious if anyone has suggestions or knows of sources to deal with this from a male’s perspective.

                                        Again ladies- just tell them you want them and they will take care of you. I’d kill for my other half to have the libido y’all say you have.

                                        • #15609

                                          Hi Jay,
                                          Thank you for the advice for the ladies of the group and I hope you get some good feedback from the males in the group regarding what you have been experiencing. That must be so hard for both of you. As a female, I know that communication is so important and conversations about sex can be difficult.

                                          I would definitely recommend that you see a pulmonary doctor and one that hopefully specializes in PH. Maybe even researching male doctors. As a female it’s easier to talk about my sex life with female doctors vs the male doctors I have. Don’t know if it would be easier for you to bring all this up to a male doctor who maybe can have some good suggestions for you.

                                          Keep the communication open with your partner and I would suggest seeing a specialist in PH and trying to get an appt as soon as possible. Have you just been going to a cardiologist for awhile?

                                      • #15618

                                          Don’t know any tricks, but do have a related question vis a vis intimacy and PH. Is there now a dating site for people with handicaps? I realize there may not be enough people with PHA or, specifically, enough men with PH to balance out the higher number of women with the disease.

                                          I would gladly offer my humble services to set straight this cruel female/male imbalance in our PHA ranks. This proposed dating site could also solve two of PH’s largest problems, female body image and related low self-esteem.

                                          Think about it. Wouldn’t a PH lady desiring intimacy, find her body image concerns to be negligible if she’s in a potential relationship with an understanding PH guy? Why allow this random disease to hijack one more aspect of your life?

                                          And, as her confidence (and experience) grows, would that not also improve her fragile self-esteem? It’s a circular problem where changing any one element improves all the circle’s functioning. Let me know of any interest out there.

                                          • #15621

                                            Hi Greg,
                                            A dating site for those with chronic illness actually sounds like a good idea. I don’t know of any personally, but I know a lot of social media groups through Facebook and maybe you could create your own , something like “singles with PH” if you were looking for it to be PH specific. I know that it could be very difficult to have someone who also had a chronic illness if i were dating them but it is good in some ways like a deeper level of understanding and experience. Even just building that connection of trust and understanding could lead to a relationship in the future. I would suggest finding groups through Facebook and seeing who may be interested in a site like that and taking the initiative to do something like that yourself ! I’m not very tech savvy when it comes to creating new groups but there are a lot of people who are!

                                            • #28726
                                              carol keilty

                                                Thank you Jen and yes that is about what I am doing. To make love is like walking two flights of stairs and one flight is hard. I wonder is anyone has ever had something happen when they are making love that landed them in the hospital or are we pretty safe? I get pains in my chest a lot lately and that is what happens to me and then I get scared and that doesn’t make for a very nice feeling. I have stopped actually and I guess that might be a better idea for now. To have an orgasm really freaks me out it feels like my heart is going to explode with blood. This is a very hard topic I haven’t told anyone this stuff sure wouldn’t talk to the doctor about it I feel really embarrassed just typing this out. Well here I am telling this stuff so hopefully someone can tell me how they feel. Thanks for this opportunity.

                                              • #28737
                                                Jen Cueva

                                                  Hi @carol, please never be ashamed here. We are a non-judgment group and want to discuss these sensitive topics. It sounds like being”on hold” because of the chest pains is the best plan for now. It is not saying that sex is out or orgasms by any means. It sounds like you are the one worried about something happening, so it certainly will damper the mood. If you do not want to bring this up to your PH team, nurse, works, too, maybe a talk therapy session may help. Would you do that? When we are scared to do any physical much at all, sex is not at the top of our list.

                                                  Funny, my hubby was in the room and asked my previous PH doc years ago. He told me what I suggested., listen to your body.

                                                  Thank you for being vulnerable and sharing your concerns.

                                            • #15628
                                              Melainie Garcia

                                                Another female chiming in. I was diagnosed with PH 11 years ago, when I was 43. In the beginning, the impact on my husband’s and my sex life was negligible. I slept with O2 and I think I may have worn the cannula during intimacy.

                                                As time moved on, my PH progressed. I remember once, about 2 years ago, having to sit up very suddenly, gasping for air for what felt like several minutes. I think it was 1 or 2 minutes, maybe not that long. (Time loses it’s meaning when you can’t breath, am I right?) This was following an orgasm. It killed the mood. I think it scared my husband. I know it scared me. I thought for sure I was going to pass out. I made a joke about it, to lighten the mood. Praising his skills, but it left it’s mark on our psyche.

                                                Our sex life has dwindled to almost nothing. We are in love, we are a team, we hold hands while we watch TV, we sleep holding hands sometime, but I would be a liar if I said I didn’t miss the physical intimacy we used to have. When we do make it happen, I am not as comfortable anymore. I guess I should turn up my concentrator and employ more foreplay. That would be fun. I’m too young to give up on sex. So is my hubby.

                                                PH makes us have to rethink our approach to everything that we do. Going to work, going to a store or having a roll in the hay. Smile!

                                                • #15630

                                                  So true Melanie,
                                                  It definitely changes the way we have to think about things and when it comes to sex it’s difficult when we know there are roadblocks that kill the mood! This has happened to me before when I have an orgasm and I start to have spotted vision or feel more short of breath. I think it has to do with the bloodflow at the moment and the contraction that is happening within the body at this time. Even the breathing that gets a bit heavier before this may have an effect! Try putting that oxygen up a little higher and seeing if that helps you. When I have an orgasm when I’m sitting upright it is less of a headrush than if I’m laying down flat. Maybe a change in your position could be helpful too!

                                                • #15631
                                                  Kathleen Sheffer

                                                    Thank you for sharing, Melainie. It sounds like you have a loving relationship and will work through this challenge together!

                                                • #16492
                                                  John Valenti

                                                    Hi All,
                                                    Or as we say here down under “G’Day”.
                                                    I would like to thank Jay for his comments and agree with him 100% .
                                                    I would like to tell you of a story that happened to me only a few weeks back while in a support group for PHers. The conversation got onto side effects of various meds that can be taken in the care of various types of PH, and as usuall the room was full of ladies of all ages and Dx’s and I, as usual, was the only Male (52 y/o, Idiopathic Pulmonary Arterial Hypertension, ) Anyways , the girls are all going on about things, so i thought, i will drop some humor into this, and watch the girls faces.
                                                    I asked the group for their permission if i stated something that has caused me great hassles since being DXed and with their permission i asked “How many of you are on Sildenfinal or a vassodilator ?, to which many ladies raised their hands, I then asked, How many of you know what these do to a Male?
                                                    Well they looked around the room and at each other and all had a blank look on their faces. I paused for a few seconds, and slammed my hands down on the table and said in a loud voice “UNWANTED ERECTIONS”, all the room roared with laughter, and the jokes started to fly, as things finally calmed down, I explained that because of Sildenifal i had many embarassing moments (and still do to some extent), and had to ask for my meds to be changed to reduce the embarassing side effects.
                                                    the fact was the ladies had never thought that vassodilators had that kind of effect on males.
                                                    well that’s my fun fact for the day.
                                                    take care and breathe easy !

                                                    • #16505

                                                      LOL JOHN!!!
                                                      I actually asked my cardiologist about this when he first mentioned this medication to me. I’m not taking this as part of my therapy but in the beginning they were thinking about a low dose for me. I even asked him “wait, would that mean that I would walk around horny all the time!?” hahahaha we both had a good laugh but then he explained that it works differently with men and women and got into the details of how the medications work that I really did’t want to hear coming from my male doctor lol!!!! But I’m glad you were able to break the ice at the meeting and brought some much needed laughter to the room. There always needs to be one class clown hahaha!

                                                  • #16516
                                                    Jen Cueva

                                                      Wow… sorry just now catching up and love this topic! It’s definitely something we all as PHers , I would think deal with .

                                                      So many good tips from the ladies and gentlemen here! I appreciate your openness, humor and experience CRS! I was DX in 2005, happily married 20+ years and I know , I don’t usually use my O2 for sex, but need to try harder to use or. It doesn’t bother my hubby at all, but I’m like Brittany and most women, it’s a self conscious thing fir me as well. Obviously, we don’t have a sex life as I would want, lol but we DO have sex!

                                                      Pillows are definitely your best friends so you’re not flat and trying new positions to see what may work best for you is the best ! It’s all about experimenting! ( @brittany-foster, I’m on 9 Revatio per day and I wish it made me walk around horny all day, but then maybe not as I d8mt have the energy to take care of that, lol )

                                                      , I almost fell out on the floor laughing as I read “ my Mom reads these “ …well I’m sure Mom knows women need sex as well, lol …

                                                      I agree with several of you , it’s often such s taboo subject and we are often embarrassed to bring it up with our doctors a d e en our significant others at times!

                                                      Lol John, love that humor😂

                                                      Melanie, I can relate to some e degree as often when my hubby thinks I’m struggling with air during sex, he thinks he’s hurting me and it kills the mood( he has often brought this up in our discussions) …I believe Brian mentioned he did most the work, I’m sure my hubby feeels that often …

                                                      Sorry so long and thanks again for you all with your comments!

                                                      • #16528

                                                        Thanks for all your responses. I think it’s good when there’s definitely some humor that goes into this. Nothing really fazes my boyfriend anymore lol he has literally seen it ALL in our relationship. From me post op to me needing him because I was about to pass out while on the toilet LOL! But now we just joke about things. When I first got my PEG tube put in I was like “it’s gonna be so weird when we have sex” He was like I wouldn’t even notice if you had lingerie on, most guys don’t even notice that stuff with sex, LOL! I was like “thanks for being so observant” hahahaha! But when you can make light out of it together and make a joke about it, it definitely eases any type of tension that could be in the way of your sex drive

                                                    • #16521

                                                        Honesty can help – “If I bring the strength, will you bring the stamina?”

                                                        That reminds me, I’m considering making a post about gender roles for PH patients in romantic relationships. I’ve wondered if the relationship experience is significantly different for affected men than women (and not just in the realm of bedroom recreation).

                                                        • #16529

                                                          VK really interesting thing to think about. I would think that it does take a lot of what I would consider my “femininity” away. Even though I don’t like to label myself and label what a “women’s role” is or anything like that, I do feel like I want to contribute and the days when I can’t do things like clean up around the house, cook, and do laundry or things like that it just takes a hit to my feelings and just to my “femaleness” . And I know in this day and age MEN should also be doing these things, but after my boyfriend works all day long until 7:30 at night I wish I could have the energy to do more. It also takes away a lot of the “kids” talk because I know that right now I would never be able to have a biological child. As much as I hate to admit it, it does crush me inside as a woman.

                                                          • #16539

                                                              @brittany-foster we’re not the same gender but we’re on the same wavelength, actually. I think that gender roles end up causing us to all feel inadequate. From the man’s perspective it’s being able to work a full time job, provide for the family, and do heavy labor (of many sorts). The physical inadequacy caused by PH can be emasculating just because the very stereotype of a man is someone who has great physical capability. PM me if you’re interested in doing a 2-way post about gender roles in PH.

                                                            • #16553

                                                              So true VK and you’re right that it must feel difficult as a male to feel like you “can’t” do the things that our society expects from us. I hate that gender roles are so strong in society but that’s the way it is and I know things have been changing and this topic of conversation has been brought to the public awareness but from a disease standpoint it’s not really talked about as much. Definitely message me with what you would want to say from a male perspective and I can contribute as a female and we can post a topic post together!

                                                        • #16572

                                                          Não gosto de ter relação usando o oxigênio. Acho incômodo, mas no meu caso é o correto a fazer. Não fico tão cansada depois. Geralmente quando não uso, ao final do sexo estou muito cansada e com falta de ar e acaba não sendo prazeroso porque quero que acabe logo.

                                                          Translated from Portuguese (as best as I can – Kathleen):

                                                          I do not like having intercourse using oxygen. I find it uncomfortable, but in my case it is the right thing to do. I’m not so tired afterwards. Usually when I do not use [oxygen], at the end of sex I am very tired and short of breath and it is not pleasant because I want it to end soon.

                                                          • #16588
                                                            Kathleen Sheffer

                                                              Thank you for sharing your experience, Francisca. This is exactly how I felt before my transplant. Oxygen made me feel a bit better, but sex always made me very tired and short of breath. You might even consider turning your oxygen flow up a liter or two while being intimate. I get especially short of breath whenever my adrenaline increases, which it often does during these times. I’m glad your oxygen helps to improve your experience, but we have a cure soon so you can feel the difference with healthy lungs!

                                                              Sorry in advance for the poor Google translation. / Desculpe antecipadamente pela fraca tradução do Google.

                                                              Obrigado por compartilhar sua experiência, Francisca. Foi exatamente assim que me senti antes do meu transplante. Oxigênio me fez sentir um pouco melhor, mas o sexo sempre me deixou muito cansada e sem fôlego. Você pode até considerar transformar seu fluxo de oxigênio em um litro ou dois, enquanto é íntimo. Eu fico com falta de ar quando minha adrenalina aumenta, o que geralmente acontece durante esses momentos. Fico feliz que seu oxigênio ajude a melhorar sua experiência, mas logo teremos uma cura para que você possa sentir a diferença com os pulmões saudáveis!

                                                            • #16590

                                                              I completely get it ! I am very similar to how you feel. I know that if I don’t wear it and if sex is more exertional for me than I will pay the price for it later and be out of breath and dizzy towards the end (which gets in the way of full enjoyment of it) . It’s a hard balance between being self conscious and doing what’s right.

                                                          • #28705
                                                            carol keilty

                                                              This was a great topic one that I have been worried about as well. I am older now but it is still a part of life. I am so afraid of having a heart attack or something and so is my husband that we don’t make love very often at all. This was good to know thank you all of you for the input. Carol

                                                              • #28711
                                                                Jen Cueva

                                                                  Hi @carol, so true, this is an important topic to approach. You say that you are worried that you may have a heart attack, etc. I am the opposite; my hubby thinks he will “hurt” me or cause my PH to worsen. It can be difficult, and planning is a no go with PH. You have to gauge how you are feeling at the time. Cuddling and touching do not require too much energy. Take it slow and stop if you feel like things are not good.

                                                                  At one PH Conference in Dallas, they did an intimacy session, and it was quite popular. even to consider

                                                                  Listen to your body, just like another exercise, take it slow.

                                                              • #29253
                                                                Jen Cueva

                                                                  Since this had some discussion within the last few months, I wanted to share this event with y’all. PHA offers a PH live event for women about intimacy and self-image. Thinking that you may enjoy this a bit, @carol.

                                                                  Check it out here, PH, Intimacy, and Self-Image. Then let’s talk about it.

                                                                  • #29256
                                                                    Colleen Steele

                                                                      @jenc when I received an email about this I noted to myself that we should share the link here…and than I forgot. So glad you thought to post it. It’s informative and well done. I hope members check-it out.

                                                                      • #29258
                                                                        Jen Cueva

                                                                          Thanks, @colleensteele, I was planning to post this earlier, but I also forgot; thankful for my gazillion post-it notes. I hope some members will find it helpful. This is an important topic that isn’t discussed often.

                                                                          For me, my oxygen tube is not making me feel sexy at all. Manny is so sweet and tells me that I always look sexy. I struggle with this as I know many others do as well. Men with PH also struggle with this. I have heard that they feel “less of a man” if they can not perform. Any men here want to share their thoughts on this?

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