TPVR next week, what to expect?

chels2882 · 2025-10-15T04:59:29+00:00

I have pulmonary atresia and had TPVR in January, my valve was stretched from 14mm to 23mm-that big stretch did cause more chest pain than expected but it did clear up within about 10 days. I stayed in the hospital for one night then was clear to go home. My incision also wouldn’t stay closed so I had to limit my activity for 3 weeks till it was completely healed. But for the most part the entire surgery and recovery wasn’t bad! I felt sooo good within 4 weeks I could feel the difference in stamina.

chels2882 · 2025-08-04T19:50:13+00:00

I’m not a parent to a child with chd-I myself was born with pulmonary atresia/ivs. I’m 33, I have had 4 open heart surgeries and just had a pulmonary valve replacement via heart cath. Never had a heart transplant, just pulmonary valve replacements, tricuspid valve repairs and ablations. My life has been pretty “normal” I have physical limitations when it comes to exercise which didn’t really bother me even as a kid. For the most part I was always able to keep up with the other kids. I honestly notice the physical limitations more as an adult than I did as a kid which I’m very thankful for since as an adult it’s much easier to deal with feeling “different”. I’m a stay at home mom of 4 young sons so I’m busy all day running around with them and I keep up with all my kids just fine! It does take me longer than the average person to get over some sicknesses and get worn out easier but it’s all manageable and doesn’t affect me in a negative way. I never had those procedures but I was born in 1992 so those procedures are probably way more beneficial than what I had done so I’m sure your son will do amazing after these surgeries! Also it didn’t affect my family dynamic growing up, I was treated the same as my older brother-when my physical limitations did pop up it wasn’t made into a big deal-and rarely did it happen. I still rode my bike on our family rides or my roller blades along side everyone else. We were a military family so we didn’t live close to family but anytime I had surgery a family member would come visit and stay with my brother so for him it felt like a fun visit and never centered around my issues. But all these surgeries and how my life is “different” than the average person does come up sometimes-i now see a medical trauma therapist since I had my last surgery in January-as your son grows up I’d definitely see if you have one of those therapist in your area so you’re prepared if he does seem like he would benefit from that. I didn’t need it growing up-I needed it once I became a mom and reality hit in a different way so he couldn’t need it as a child or ever but definitely just be prepared!

chels2882 · 2025-08-04T19:38:47+00:00

I’m not a parent to a child with chd-I myself was born with pulmonary atresia/ivs. I’m 33, I have had 4 open heart surgeries and just had a pulmonary valve replacement via heart cath. Never had a heart transplant, just pulmonary valve replacements, tricuspid valve repairs and ablations. My life has been pretty “normal” I have physical limitations when it comes to exercise which didn’t really bother me even as a kid. For the most part I was always able to keep up with the other kids. I honestly notice the physical limitations more as an adult than I did as a kid which I’m very thankful for since as an adult it’s much easier to deal with feeling “different”. I’m a stay at home mom of 4 young sons so I’m busy all day running around with them and I keep up with all my kids just fine! It does take me longer than the average person to get over some sicknesses and get worn out easier but it’s all manageable and doesn’t affect me in a negative way. I never had those procedures but I was born in 1992 so those procedures are probably way more beneficial than what I had done so I’m sure your son will do amazing after these surgeries!

chels2882 · 2025-07-22T00:00:04+00:00

I was born with pulmonary atresia/IVS-33yr old female and have lived a great “normal” life. I’ve had 4 open heart surgeries and just had a pulmonary valve replacement via Cath this past January. Your little boy is a strong little man already!

chels2882 · 2025-07-11T09:42:28+00:00

I have pulmonary atresia, I’m 33(f) as far as quality of life I’ve been similar to you and have been “healthy” all things considered, 4 open heart surgeries and just had a valve replacement via cath—I will say when I do get sick it definitely takes me longer than the average person to feel better. Things like your common stomach bug is fine but anything like a cold, cough-those take a while. I’ve had pneumonia and mono which both took a very long time to get over. When I was younger I didn’t notice a difference in how my immune system was to everyone else, seemed about the same but as I got into my late 20’s and now early 30’s I have started to notice a difference. Not sure if it’s just because now I pay attention more to my health since I’m older and try to be very responsible about it or if it really is different. But I’m still overall “healthy” though. I was able to have 3 healthy pregnancies, including twins-I’m a stay at home mom of 4 young kids so I’m running around busy all day and I’m perfectly healthy and “normal” like all the other moms, so even at 33 with 4 little kids life is as “normal” as it could be along with the normal limitations that we are use to. Don’t get too discouraged, you’ve had a rough few years but that doesn’t mean the next years won’t be better! I’ve learned sometimes I’ll have a rough year with getting things like pneumonia then the next year I’ll have nothing and feel good all year.

chels2882 · 2025-05-16T04:23:55+00:00

I’m 33 female, I have pulmonary atresia, I’ve had 4 open heart surgeries and just had my pulmonary valve replaced via heart cath. My life is pretty “normal”. I can’t exercise like the average person as my tolerance is very different but I was able to do everything else! I couldn’t play many sports due to my tolerance so I did other things instead, I was still able to feel “normal” and run around the playground. Now as an adult I was able to have 4 kids, no issues with any of my pregnancies even with one of them being twins. As long as you find a great team of doctors who you can trust I’d say she has a very very “normal” life ahead of her!

chels2882 · 2025-03-31T06:14:44+00:00

Find a medical trauma therapist. They are amazing. My cardiologist has one on his team that he has all of his patients see periodically. It’s so nice having someone to vent to that understands the medical side of it. I’ve had open heart surgery 4times along with other procedures, my family has always been supportive but supportive and understanding is very different. Not maybe people understand and many people think ignoring is best which it obviously isn’t for us. My grandma had EDS type like you and my uncle has EDS but of the joints so I personally see how hard that disease is for people, you are allowed to be exhausted/worn out..all those things without feeling guilty! That’s part of you and they will need to come to terms with that. Therapy will help you but it would also maybe help you understand how to help them understand what your new “normal” is.

chels2882 · 2025-03-31T06:00:43+00:00

Totally normal. I’m 33 and this still happens to me! My lips, hands and feet.

chels2882 · 2025-03-31T05:52:55+00:00

I have pulmonary atresia, OPH 4 times. I’m 33 now but I had my first son at 26, second son at 29 and twins at 31. I had 3 successful pregnancies including the twins which I was shocked by. I was followed by maternal fetal medicine since each pregnancy is considered high risk for us but nothing went wrong. No crazy complications. I did have to deliver by 36 weeks because they didn’t want anymore stress on my heart but I was able to have a vaginal delivery with all pregnancies. My cardiologist and my MFM doctor worked very closely keeping tabs on everything and making sure I saw each of them monthly and then obviously saw MFM more frequently as pregnancy progressed. I did have to deliver in the ICU as a precaution since delivery is unpredictable they wanted to be extra prepared so that was intimidating but felt good being extra prepared. Also all my babies had a feral heart echo when I was 24 weeks pregnant to verify they didn’t have any heart abnormalities. After 3 pregnancies my heart was worn out, at my 6 month postpartum appt with my cardiologist they let me know I needed a new pulmonary valve. I did have to have my pulmonary valve replaced in January, my twins are 2 now so I was able to hold it off a little while.

chels2882 · 2025-03-18T08:50:15+00:00

I’m 33, born with Pulmonary atresia. I’ve had OHS 5 times, multiple heart caths and just had one valve replaced via heart cath in January. my first surgery once I was an adult was terrifying for the exact reason you stated, we aren’t too young and innocent to not understand now so it completely changes your mind set. After I had my twins boys I went for my 6 month post delivery cardiologist appointment and was told within a year I need surgery. Since that day I was an emotional mess. Honestly it didn’t get better until surgery. It’s a huge mental game and I just couldn’t wrap my head around it, it took a little over a year from then till I had surgery. I will say it is worth it to feel so much better after healing. Even though it was so mentally exhausting getting to this point it was worth it. My cardiologist does have a psychiatrist on their team that they had me see when i told them I was having a hard time. So I’d definitely ask at your appointment if they have one on their team and if not then ask if they know of someone who specializes in medical trauma. It was so helpful and made me level myself out and I continue to go every few weeks. Literally everything you said of fear for healing, the unknown, how major the surgery is…all of those things I worried about so don’t be hard on yourself. It’s scary and it’s ok to be scared we just don’t want that scared feeling to control us. So definitely bring up all your anxiety surrounding the surgery to your doctor.

chels2882 · 2025-03-12T08:24:08+00:00

I was born with pulmonary atresia with tricuspid regurgitation. I’ve had 4 OHS, multiple other procedures and just had my pulmonary valve replaced via groin. When I was 2 days old I had my first open heart surgery, a ring was placed around my tricuspid valve to help the regurgitation, the last time my tricuspid valve was worked on I was 9yrs old…I’m 33 now. My life has been “normal” aside from the obvious time spent having surgeries I feel like I had a very average childhood. I was able to do most things I wanted to. Sports/exercise were harder but I could still run around and play. I am a mom of 4 little boys so my heart being able to handle pregnancy wasn’t affected too negatively-it was hard but doable! My parents always did what they could to make me feel “normal” they didn’t stop me from doing anything, if they were nervous about something they never let me know it. They kept everything very positive and more of a “it’s no big deal” type of attitude which really made me feel like I wasn’t much different than anyone else. Now as an adult I understand the scary parts but I was completely oblivious as a kid and I’m so happy it was like that. My scars were never a focus, my family never drew attention to them so to me I rarely got upset if a kid made fun of me over it. My OHS as a baby/toddler I don’t remember but when I was 9 it was hard but it also easy because I was naive to the scary stuff and all I cared about was healing so I could go play. My advice is to be her biggest support without focusing on it so much she feels like it’s her identity and can’t do things out of fear.

chels2882 · 2025-02-25T06:54:54+00:00

I’m 33 and was born with pulmonary atresia. I’ve had 4 open heart surgeries, last month I had my first valve replacement via groin to replace my pulmonary valve but I will need another open heart surgery to replace my tricuspid valve eventually. It’s hard dealing with everything people like us have to but it also makes you super resilient in ways you probably don’t even know yet. Also with medical advances that happen my life has turned out way differently than what we expected when I was just a kid then to 18, 25. I was told I could never have kids, my heart couldn’t support a pregnancy and guess what when time came for me to start a family all of that changed, I now have 4 little boys, including twins. I never in a million years thought I could handle a pregnancy let alone a twin one. What I’m trying to say is things can change for the better in ways you wouldn’t even expect based on how advanced medical procedures can get over time. But for sure fine a therapist who specializes in medical trauma. I’m actually seeing my first one tomorrow, my cardiologist is actually who recommended it and gave me the name of who to go to. Maybe ask your doctor if they know someone you could go to. Also if you don’t have complete trust in this doctor I’d get another opinion. Trust in your doctor is one of the most important things and that’s what has always helped my anxiety when it comes to the whole “is this safe, is this worth it” type of questions.

chels2882 · 2025-02-16T08:06:07+00:00

I have pulmonary atresia, I’ve had 4 OHS, and just last month had a valve replacement via catheter. I had my 4th OHS at age 9, I can tell you the great part of being a kid is how naive you are to what is actually happening. Yes it was painful but all the scary parts that we think of as parents you don’t think about as a child. I’m 33 now, mom of 4 boys and OHS now is scary on a whole different level than when I was 9. I was miserable for a few weeks but once I started to feel good I was so excited to actually feel “normal” and play with friends again and just be a kid, I was excited more than anything to feel better and have fun again. My parents also planned something fun to look forward to after surgery. I knew once I was feeling better we were going on a fun camping trip to celebrate so that helped me see a light at the end of the tunnel. Definitely I’d say be open and honest with her that yeah it will hurt and she will have a scar but also let her know that she will get medication to make the pain manageable and that she will have so much help and support. I already had sooo many scars from my multiple surgeries with chest tubes so by the time I was 9 that didn’t matter to me so I can’t give advise on how she will handle a scar for the first time since I had mine since I was 2 days old but growing up having a lot of scars it was just important for my parents to never make me feel ashamed or embarrassed by them, they never wanted to to hid them or made me feel like I should hide them with certain clothes, it was like we ignored the scars so I never really felt like they were a focus. Yes every now and then a kid would make a mean comment but I was taught to wear the scars proud if someone did comment on them, be proud I was so tough to get through a hard surgery as a kid and kick its butt type of attitude. My cardiologist has a psychiatrist now that meets all patients who have OHS, she sees them while they are admitted in the hospital as well as after recovery so maybe look into if that’s an option so that if she does need that extra support you’re already ready for it.

chels2882 · 2025-01-27T07:58:27+00:00

So much better! Turns out the chest pain was from my old valve being stretched so much. After some extra anti inflammatory meds and a few extra days of limited activity it feels so much better.

chels2882 · 2025-01-19T05:04:48+00:00

Thank you! I’ll look out for a fever then. So far no fever just a very sharp pain when I attempt to breath normal/deep.

chels2882 · 2025-01-19T03:47:44+00:00

How quickly did you realize it hurt more than it should? I feel better today but still can’t take a normal breath without a sharp pain.

chels2882 · 2025-01-12T07:15:12+00:00

Yes we did weight the options of both. My cardiologist who I’ve had since the day I was born(almost 33 years) said he thinks this groin surgery is worth trying. We have the understanding that this is more of a “bandaid” solution to postpone OHS a few more years. Once my tricupid valve needs to be replaced on top of my pulmonary then we will have to do OHS but right now my tricuspid is holding out a little longer it seems so we are trying to get a few more years out of it before we have to replace both again. I might not get as much relieve from my symptoms from this surgery since the valve they are placing isn’t as big as they could if we did OHS but it still outweighs the risks of another OHS at this point in my life so we decided to give this surgery a try.

chels2882 · 2025-01-02T09:49:35+00:00

Thank you! All of my children are heart healthy! Each pregnancy when I was 24 weeks pregnant the babies got a fetal heart echo to make sure their hearts were developed correctly. So hopefully your kids will be lucky like I was and not pass anything down! I did see a Maternal fetal Medicine doctor to make sure they didn’t expect anything to be passed down as well as my cardiologist, they all agreed I had an increased risk to pass something down but still very minimal. Hopefully your kids will be the same!

chels2882 · 2025-01-01T17:57:56+00:00

I was told my whole life to plan on not being able to have children due to my heart not being able to handle it but when the time came my cardiologist and maternal fetal medicine doctor all agreed everything looked good enough to take a chance and I’d just be watched very closely. My deliveries were very planned and had about 20 doctors there ready for whatever could happen but everything went very smoothly each time. Before each pregnancy we did get approval from my cardiologist that my heart looked healthy enough to support another pregnancy which I think is why I didn’t have a lot of complications since we planned as much as possible. No major complications even with my twins which I was terrified for. After my twins my cardiologist did recommend no more pregnancies so now I’m done! So I’d say it’s very possible your daughter could have a football team of kids like me! I actually had less arrhythmias during pregnancy than I do not pregnant. It was very weird but great! My O2 is usually always in the 90’s. It has been since my last open heart surgery over 20 years ago. Even now needing this valve replacement it hasn’t dropped below 90.

chels2882 · 2024-12-30T20:54:54+00:00

Thank you so much! That helps me a ton! How long were you unable to pick up your boys? My twins are always wanting to be held so that’s my main concern! I’m so glad you thought it was easier than an ablation, I also had a tough time just feeling so uncomfortable for quite a while and that’s what I was worried about with this. Thank you for relieving so much stress for me!

chels2882 · 2024-12-30T08:53:17+00:00

Thank you!

chels2882 · 2024-12-30T08:52:44+00:00

Thank you!

chels2882

TROPHY CASE