Pulmonary hypertension can be isolating; find people who ‘get it’

[azebraman]

Thank you for this post! I am still looking for social support and actually, this group has so far – in the past 3 days I’ve been seeking – been able to provide enough for me.

I’m enough of a diagnostic quandary that looking at other diagnosis-specific forums leaves me out quite a bit. I have a pulmonologist telling me to watch out for a reduced lifespan, but those outside the specialty (even my cardiologist) don’t see anything wrong with me because I “look so normal and healthy”.

My PHTN being the root of my concerns, I think, brought me here. I’m probably never going to find another person who had the same cause (I’m betting that few people have spinal defects and had to undergo a surgery that traumatized their ribcage), but here I find people with the same end result and the same concerns.

[brittany-foster]

VK,
i’m glad that you are finding support here and that you are sharing with us ! I know how hard it can be when even doctors don’t seem to understand. I too have restriction from my chest walls not being able to expand properly because of having open heart surgery. I also was born with a rare form of spina bifida and have surgery on my back as a child and scoliosis which also impacts my breathing and expansion of my lungs. I have something called central hypoventliation syndrome which means my brain and spine don’t send the proper signals to my body to breathe. Over the years this really restricted me and that is what my PH is secondary to because I have hypoxia (low blood oxygen) because of lack of exchange of gases. We are definitely all complicated that’s for sure ! So hard when it’s not straightforward !

[azebraman]

Britt – To be honest you’re the first person I’ve run into with chest restriction from open heart surgery. Did your doctors tell your parents your life would be “perfectly normal” once the defect was fixed? My peds surgeon did and now it’s difficult to convince the parents that things aren’t normal (they’re now on the team of people who “don’t get it”). :-\

[brittany-foster]

They thought so originally but I have had more surgeries and have a pacemaker so the original prediction of ‘being fine’ has gone out the window! They have actually been testing other children in the office and bringing awareness to testing oxygen on exertion which is how they diagnosed mine! They have so much to learn!

[robin-frankel]

Brittany, how long did it take you to recover from open heart? I need a thromboendoarterectomy which is open heart and lung. Certainly I am concerned about recovery time, how much time in San Diego my husband would have to be off work for, and how my brain will be affected by the hypothermia they use. I know this wasnt your surgery but maybe you have some tips on open heart/lung that you’ve heard? Thanks Robin

[kathleen-sheffer]

Hi Robin,

Hopefully your team can answer some of these questions. My heart-lung transplant was a more major surgery, with lots of new medications to handle afterward. However, the incision itself is similar to open-heart surgery (they actually retraced the incision from when I had open-heart at birth). The scars continue to heal, but were mostly healed after six months. Based on what I’ve heard from others who have had open-heart surgery, I think six months is a good approximation for how long it will take you to feel “recovered.”

I’m not sure how long you will need to spend in San Diego. I think a week in the hospital is usually normal. I had to stay near the hospital for two months for testing, but hopefully you won’t have the same need. Everyone’s recovery process is different so don’t feel like you need to keep yourself to a timeline. It’s great to gather information to have an idea of what you and your husband need to prepare for, but it could always be much longer (or much shorter). Don’t set yourself up for failure by having unrealistic expectations for yourself. These things take time, and are much easier in the long run if you put the time in.

Have you considered fundraising to help cover the expenses? Most people do this before going on the transplant list, and it sounds like you will experience similar trials: relocation, loss of wages, etc. This can give you a cushion so you don’t have to worry about money while you’re worrying about your health. People want to help! I wish you the best of luck with your surgery. Please continue to ask questions. I’m sure @brittany-foster will have knowledge to add.

[robin-frankel]

Hello, Kathleen, thank you for all the info! They say it’s a twelve hour surgery on heart lung bypass using hypothermia every twenty minutes to preserve brain function, then ventilator and seven to ten days in ICU. That’s all I know. I may be there weeks or a month. we are self employed and if we don’t work we don’t get paid, we have a private practice that can fall apart quickly. I have severe stage glaucoma and have rebuilt my career before with eleven eye surgeries. I am concerned that I must advocate for my sight. Prednisone etc is out. I’m told my husband must stay with me but I will check, I’d like to have power of attorney for my adult kids to sub. It’s the recovery that concerns me with autoimmune disease and glaucoma. Every week I feel like a light that is dimming, I know that sounds dramatic but it’s the best description. My tests confirm I’m in trouble. Hope I get accepted, but what comes behind it financially and physically is scary!

[brittany-foster]

Hi Robin,
@kathleen-sheffer is so right that everyones recocery looks different depending on how they heal and if there are any surprises during the surgery. I always hope for tue best but plan ahead of time and let people know that I may be needing extra help. From my experiences, I tried doing way too much after I started to feel a little better. My advice would be don’t push yourself the extra mile even if you are given an inch! You want to heal completely. It isn’t just a physical healing. It’s an emotional one too and sometimes the emotional healing is more difficult to cope with. I would suggest speaking about your fears, doubts, and worries beforehand so it’s not all held in. The more mentally prepared you are and the more info you know the better. There is no such thing as too much knowledge. Those are ways you can prepare before. My doctors have said to me that it is helpful to do some core strength exercises before a surgery. That helped me during my last one! Healing is NOT linear. Be patient with yourself.