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    • #25604
      Jen Cueva
      Moderator

      I read this column by a fellow PH columnist, Ellie. I found this quite impressive as well as positive. Although I am grateful to have an amazing hubby, some are looking for love and not so lucky. Take a read of Ellie’s column, and I bet this will shine a bit of positive light on relationships.

      I wish Ellie and her relationship all the best. I actually know a few PH couples who fell in love. Both have PH, I bet this makes things interesting.

      She did an excellent job with her tips and her mindset when she decided to choose a partner. Are you looking for love and PH keeping that from happening? Have you had a poor experience with relationships in the past? Let’s talk about love and relationships. What qualities do you look for in a partner? Are you honest from day one?

    • #25627
      Tien Nguyen
      Participant

      Everything is already made so difficult with PH and having to add another person’s feelings and concerns into the situation, makes things so much more confusing. I was in a four year relationship that was going well but she broke it off a week before I was diagnosed. She said the symptoms that I was exhibiting had her convinced I was using cocaine( which I wasn’t using and street drugs ) I was too sick and tired to prove otherwise, so I let it end. I’ve been single for almost 4 yrs now and there has been moments that I wished I had someone to hold me I was in pain or someone to help organize my numerous meds. A great many times, I just stopped and wanted to give up. But thinking about my daughter’s would help me pull through. Cuz sadly, once I’m gone then there’s not many people that they could depend on. I resolved that I would get my life back in order and provide a stable environment for the 3 of us. But i despised online dating because people tend to either think too much of themselves or the messaging back and forth was so tedious. An in person interaction was what I craved for. But to even suggest a meeting was usually met with a silent response. I try to tell myself that this heart condition doesn’t define me and so I will tell whoever I meet that I’m sick, whenever I feel like I should. But that didn’t work too well, I’ve been yelled at and lectured for waiting too long cuz the other person was looking for a long term relationship and didn’t want to waste her time on me. That one comment actually made me smile. Not sure why. And the ones that I tell straight from the beginning, I tend not to hear from anymore. Maybe I just haven’t met the right person. Either way, the only thing i can say about dating with PH is that it sucks. Lol

    • #25632
      Colleen Steele
      Keymaster

      @simplyme my jaw dropped when I read about your former partner accusing your health problems being cocaine related. That must have really been shocking for you to have anyone, especially someone you care about, make such an accusation. Finding the right person is hard enough but I can image how much more complicated it is when you are living with serious health problems.

      My son is 20 and even post-transplant he isn’t even making an effort to start a relationship with anyone. He said there is too much to worry about in regard to his health to involve another person. I hope he changes his mind and finds love in the future. I know it’s hard but everyone deserves someone special in their life.

      I so think it’s important not to rush relationships which it sounds like you are cautious of doing. I’m hopeful that in time you will meet the right person. Thank you for sharing your relationship experiences. I’m sure there are members here who can identify with what you are going through.

    • #25652
      Jen Cueva
      Moderator

      @simplyme, I am so sorry to hear of your past partners. I like that you are focusing on your girls and you first is a great idea. But, I also agree that everyone deserves someone. I always feel that it is usually when one least expects it; they find love.

      I hope that you keep the positive outlook that your PH does not define you. I am shocked by your ex accusing you of drugs. I have heard some heartbreaking stories, but I have also listened to stories of finding love. Having someone to be by your side helps, but it also takes a special someone.

      Don’t give up on love.

    • #25653
      Jen Cueva
      Moderator

      @colleensteele that breaks my heart for Cullen. But, I cannot imagine dating with PH at that age. I have a younger PH friend that is now married and adopted 2 little kids. I remember her dating and how frustrated she would get in her early 20s.

      I hope that he, too, will change his mind and find true love. Love is never to be rushed, even more important when dealing with health issues such as PH and post-transplant.

    • #25663
      Joanne Sperando
      Participant

      I became single again 5 years ago. It took me a long time, but I finally tried online dating with not a lot of success. Having to explain 3 illnesses was daunting. Trying to date with gut issues that come along with PH meds was nearly impossible. There are a few websites that specialize in dating with chronic illnesses, but the numbers of participants is extremely low. I’m not hopeful, unfortunately.

    • #25674
      Jen Cueva
      Moderator

      Hi @joanne-sperando-schmidt, I am sorry to hear that you are feeling hopeless. I can imagine explaining 3 illnesses, and as you mention, gut issues are complicated. I am not saying things are easy by any means.

      I have been married 28 years, over half of that time has been PH life. I can certainly understand how navigating dating with unpleasant side effects is nearly impossible for you. Marriage life with some of these, I, too, find embarrassing at times. It takes work for us, also. I get it but he also has known about PH so no surprises. Well, not as many, lol.

      Thanks for sharing your thoughts, and we all deserve love, I think. But also understand your views, too. As I mentioned, dating life would be difficult.

    • #25684
      Tien Nguyen
      Participant

      Gut issues, that is so much better than the other terms i have for it. At this point, i can’t even imagine living with a new gf and me having but issues in the middle of the night. And sadly, I’ve lost count of how many pairs of jeans and boxers I’ve thrown away. So I feel pretty hopeless as well, Joanne. I’ve been diagnosed for over 4 yrs and I have yet to even meet another individual with PH in person. And it’s so sad and utterly stupid that I would feel that I would rather have cancer rather than this. And I didn’t fully comprehend why my doctors cared so much if I had family support or not. It is very critical to have family and friends that will be there. I thought that I had my families support but was proved wrong when my sister convinced everyone that selling my home would be the smart thing to do before i died so they could avoid all the red tape. Being diagnosed with PH and all that comes along with it, let’s add on homelessness, unemployed and no state or federal assistance. I’m so sorry, I think I went a little off subject. Most times I just want and feel like I need a hug or someone to hold. But when a guy says those things, females think that it’s just a lie or that maybe I’m gay. Lol but honestly that’s what I’m looking for. But I feel like it is hopeless. But at least i still have my kids and that helps most of the time. Lol sorry again for going off subject, i guess I just got carried away.

    • #25695
      Colleen Steele
      Keymaster

      @simplyme there is no such thing as going off topic. Topics often lead into another one and that is ok. Never hesitate to express what you are feeling.

      You mentioned that you haven’t met anyone with PH. Here is a link from the PH Association that might help you find a support group, if you are interested.

      Support Group Map and Meeting Calendar

    • #25708
      Jen Cueva
      Moderator

      @simplyme, I am so sorry that you are feeling so hopeless. @colleensteele offered another excellent resource, PHA. It certainly does make PH better when you have some support. Often, I think those who do not have family find support from others, like this forum. I have several PH friends who have no family. Their support system may be a fur baby, other PH patients, and a few close friends.

      Air hugs coming your way from Texas- everyone needs hugs. My hubby is a big guy, and he likes hugs, too. There is no shame here. Take care of yourself.

    • #25798
      Joanne Sperando
      Participant

      I’m a support group leader here in NY and I can’t encourage attendance enough! It’s a wonderful tool for coping with PH…sharing your trials and maybe a few laughs too, with people that know exactly what you’re going through.

    • #25808
      Colleen Steele
      Keymaster

      That’s great @joanne-sperando-schmidt! How long have you been a group leader? Thank you for sharing and encouraging others to join support groups too.

    • #25810
      Jen Cueva
      Moderator

      Hi @joanne-sperando-schmidt, I have a PHriend in Niagara Falls, NY area who is also a support group leader. Do you have a large group there? Did you start a support group because they did not have one in your area? I think that is awesome!

      Being a part of a support group online or in-person certainly is a huge help. You certainly do laugh and sometimes cry together. How long have you had PH?

    • #25821
      Carol Volckmann
      Participant

      Hi Tien, First I am horrified to hear about your ex girl friend. But the more I think about it, I am glad she is out of your life. She showed her real personality and I cannot believe she would stand by you and be able to share with you your life as it is.

      The resources for you to check out I believe would really be helpful. Also reaching out to friends and being afraid in letting them know about your PH. Some may be unable to handle it, but don’t give up for some will reach back and kust let them know what you need

      I wish you all the very best and send you HUGS from WA state
      ☺🐶♥️

    • #25822
      Joanne Sperando
      Participant

      I founded the Long Island, NY group in 1999 or 2000. Now, I co-lead with two other patients and two NPs. We started another group in the next county. It’s very rewarding, putting PHers together and I love seeing friendships form.

    • #25823
      Joanne Sperando
      Participant

      Hi Jen, our group is on Long Island. I started the first one in the area and now we can two. Niagra Falls is waaaay upstate. how great that your friend started a group there. I’m the third person in my family to get PH and I’ve had it for 21 years (22 in July!). My brother passed in 2015 after 20 years with PH and my aunt passed in 1963.

    • #25830
      Jen Cueva
      Moderator

      @cdvol3gmail-com, thanks for your support to Tien. I am sure that he appreciates the suggestions, too. You bring up an important point. Often if we let our friends and family know they may be OK with our PH. I find that we are most afraid of the response. I hope that you are doing well this week. When did you say that your follow-up appointments are?

    • #25831
      Jen Cueva
      Moderator

      Hi @joanne-sperando-schmidt, I am sorry to hear about the loss of your brother. I know several PHriends who have familial PH. That must be difficult.

      22 years, wow! Amazing! I am just over 15 years and know several that are more long=term like yourself.

      That is awesome that you started the PH group. I am sure that in the time since you began the support groups, you have seen and bonded with many PH patients and caregivers. Thank you for doing such an important job.

      How many people do you think that y’all have between the 2 SGs?

    • #25835
      Joanne Sperando
      Participant

      @jenc, Well, at one point, the newer group in Suffolk county had about 10 members, but we’ve lost some patients and have now consolidated the two groups into one. I suspect that as more people are diagnosed in Suffolk, we’ll expand again. The Nassau group has about 50 active members but as I’m sure you know, attendance and participation waxes and wanes. Newbies come to us very often and it’s usually the first time they meet a fellow patient. Yes, it’s SO important to bring our community together!

    • #25836
      Jen Cueva
      Moderator

      @joanne-sperando-schmidt, it is indeed essential. I remember the first time that I met another PH patient. That was a great feeling! It helps so much as you go through things and can share with others who understand. That has to feel amazing to know how important you are, and the other members are for the newbies. That is a large group.

      How are you doing with your PH currently?

    • #25841
      Joanne Sperando
      Participant

      @jenc I’m stable. Unfortunately, I developed Ulcerative Colitis from annoying the hell out of my GI system with all the vasodilation. The colitis in combination with the PH is why I finally stopped working after 13 years of trying to tough it out. I had open heart surgery in 2016 when a pulmonary artery aneurysm that we’d been watching for over a year kept growing and growing. So I now have a PA made of dacron and a cow pulmonary valve. I don’t know how that will impact my survival but I seem to be doing ok!

    • #25842
      Jen Cueva
      Moderator

      Wow, @joanne-sperando-schmidt, that is horrible! I am sorry to hear about the ulcerative colitis. You are not the first person that I have known who develops GI issues after awhile. Some doctors refuse that it is related, but I agree with the years of vasodilation. It certainly makes sense, although no fun!

      Wow, you have been on a journey for sure. I am happy that they went in after watching the PA aneurysm grow. Now, you are the first who I have heard this from. How scary that must have been, not knowing if it would rupture at any time.

      I am happy to hear that you are doing OK so far. I am sure, like many of us, every day is different. Do you require oxygen, or has the open-heart surgery helped that, too? Thanks for sharing your journey with us. I am certain that it will help others.

    • #25867
      Joanne Sperando
      Participant

      @jenc, hundreds of PHers talk about gut issues. I could’t understand any doctor that doubts the connection to the PH meds. If you’re vasodilating a person, you simply can’t restrict it to the lung vessels. It’s going to result in typical dilation side effects, like redness/flushing, foot pain, jaw pain, and GUT issues. Yes, my journey has had it’s share of ups and downs. The aneurysm surgery was indeed rare, but I have heard from others who were under consideration for it too. I think we’ll be hearing about it more. My doctor wrote a paper on it. The only time I’ve used O2 is when I’m not feeling well. After my hospital stay, my insurance company took it away from me because my 02 sats were consistently good.

    • #25877
      Jen Cueva
      Moderator

      @joanne-sperando-schmidt, I can understand how this frustrates you. Sadly, not all doctors aren’t as educated as others( putting it nicely). It certainly makes sense. What is your doctor’s name? Do you have the paper that he wrote? I would love to give it a read.

      I am grateful that you do not require oxygen as often. Insurances change their guidelines for oxygen all of the time. It is frustrating to deal with them. I have had to call and fight for my oxygen if they did not feel that my oxygen was low enough. I knew several years ago that they were trying to get some new guidelines for PH patients who wear O2.

      Any plans this week? Are y’all still on lockdown?

    • #25886
      Colleen Steele
      Keymaster

      @joanne-sperando-schmidt I find it frustrating that insurance took your O2 away even if your sats were good. Do you sometimes feel like you are struggling to breath even when your sats are reading well? My son never exhibited significant desaturation until he was in end stage PH. 97 was his norm and if it dipped to the low 90’s that was our indicator that he was really struggling. PH isn’t just about low oxygen, it’s also “feeling” like you can’t breath. His doctor’s put him on oxygen even when his sats were in the 90’s… and it helped him a great deal.

    • #25893
      Joanne Sperando
      Participant

      @jenc I started my PH journey with Dr. Robyn Barst at Columbia Presbyterian in NYC. She worked with a great team, including her fellow cardiologist, Dr. Evelyn Horn. My brother and I saw them both until Dr. Horn moved on to Weill Cornell and started a PH center there. After Dr. Barst retired, I transferred to Dr. Horn who remembered me from 1998. In fact, she diagnosed me. I can’t find the article but there’s a LOT of info out there now about pulmonary artery aneurysms in PH. I consider myself VERY fortunate to be in her care. She’s pulled me out of the fire twice! Yes, we’re still on lockdown and I’m planning my first virtual meeting with PHA’s help for next week!


      @colleensteele
      , I absolutely feel better some days than others. I bought a portable O2 concentrator for traveling and use that if I feel I need it.

    • #25895
      Jen Cueva
      Moderator

      Wow, @joanne-sperando-schmidt, I have heard so many beautiful stories of Dr. Barst. I know that she is certainly missed in the PH world. She was a true pioneer. I can relate to that, Dr. Channick, my PH doctor for about 10 years before I had to change, was a lifesaver for me. I am grateful that you are here and sharing your journey.

      I certainly want to research a bit more about PH and PA aneurysms. I cannot wait to hear more about your virtual meeting. Do y’all do virtual during the harsh winter months, too? I know that y’all have such cold winters.

    • #25909
      Joanne Sperando
      Participant

      @jenc All the stories are absolutely true. Dr. Barst and Dr. Horn are pioneers. And I know Dr. Channick too. I met him when I served on the PHA board. We’re so fortunate to have minds like these in our community. I’ll let you know how the virtual meeting goes…it’s our first!

    • #25911
      Jen Cueva
      Moderator

      How long were you on the PHA boards, @joanne-sperando-schmidt? Maybe that is why your name keeps sounding familiar. I worked with Katie and those in advocacy for years. I still do as I find the time.

      I miss Dr. Channick greatly!

      I led a patient panel at the PH Conference in Dallas about 4 years ago. Were you there, or did I ask you that already?

      Good luck with your meeting, have you joined any of the virtual PHA HH yet?

    • #25984
      Joanne Sperando
      Participant

      I served two terms on the board. it was a wonderful experience. I haven’t been to a conference in a long time. What’s PHA HH?

    • #25992
      Jen Cueva
      Moderator

      Impressive, @joanne-sperando-schmidt, I am sure that you know a few of my PHriends, too, then. PHA HH is the virtual happy hour that I have seen some weeks on Facebook. I have yet to remember to attend. It is usually on Thursdays, and I think it is on Zoom.

      How did your virtual support group meeting go?

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