Scheduled for OHS to repair ASD (after failed cath closure), device removal and repair of tricuspid regurgitation. I am terrified since I have some other issues that put me at a 90% survival rate. Could be worse but knowing 10 out of 100 patients don’t make it in 1st 90 days scares me. Infection risk is high and I have Factor V too which contributed to the pulmonary embolism that lead to my ASD diagnosis. Testing revealed one thing after another. I have some pulmonary hypertension, right heart enlargement, and mild diastolic dysfunction. Believe most of the problems stem from undiagnosed ASD and everything got worse after the huge PE. Sounds like others with ASD have had valve problems, pulmonary hypertension ant right heart enlargement too and was wondering if these things improved after closure. I am told I must have surgery as the tricuspid regurg and shunt will cause big problems soon. Except for lack of endurance and occasional dizziness I feel ok. Just hate to put myself at such risk but realize soon my symptoms will increase. Sounds like so many people have terrible pain and get infections after surgery. Would like to know if there are any steps I can take to make recovery safer and easier. I live alone but have family that will come by daily. Thanks
Th
Anton said:
Hi Sallie
I really do wish you the very best outcome achievable. If it’s any comfort, though probably not, I started my encounters with ASD repair in the days when the survival rates for adults in my country were 50/50 and for children 70/30. It is stating the obvious to say that cardiac interventions have come a very considerable distance since then.
Device retrieval is presumably unavoidable and, as they have already tried percutaneous closure, I am assuming that your shunting does not constitute a contraindication to closure. Still, if your shunt is right-to-left you will be wanting once more the strongest possible assurance they can give you that your right heart will cope with the added pressure following closure.
PAH is, in my experience, a curse and halting its progression, perhaps even resolving it altogether in time, will be something for you to celebrate for year upon year. With its being at Stage One, I would be thinking that you will have an easier recovery from OHS than if it were more advanced. Though I have read optimistic estimates, it is my understanding that RH enlargement reduces only very, very gradually.
On the subject of safety, one thing to be conscious of post-surgery is stretching. Within days of emerging from surgery I was being given physio I could barely tolerate. The incision split open and infection set in. The result is so ugly that a few years ago a physician thought my decades-old scarring was recent. Another, not so long ago, simply took ten years off the date I reported to her! Some work colleagues, not subjected to premature physiotherapy after OHS, have enviably neat scars.
On the subject of an easier recovery, I found that having family, young and old, buzzing around me, and getting involved on a limited scale in their activities, lessened the psychological impacts. It is good that you have family to watch over you. I hope that they will furnish plenty of diversions. The internal physical impacts are not so much within a person’s control. Some hearts, mine among them, register strong objections to any interference. Recovery times from both OHS and percutaneous closure have been protracted and roughly the same for me. Yet some of my close relatives bounced back from OHS for ASDs comparatively quickly. Hopefully you will be a rapid recoverer.
I look very forward to reading your updates once you are out of hospital.
Kind regards
Anton
Thanks so very much for your thoughtful and informative post. I was worked up at two different medical facilities. One felt the pulmonary htn, rt heart enlargement and tricuspid regurg were a result of the saddle PE and would improve with time. When things started to worsen instead of improve I obtained another opinion and the large ASD was discovered which seemed to explain so much including my long history of palpitations and difficulty with exercise endurance. The first MD still thinks I had a pfo that didn’t require correction but had no explanation for what is now severe tricuspid regurgitation that will cause portal hypertension if not repaired soon. I decided to collect all my records for review at the Cleveland Clinic. I was in touch with them when I learned that the closure failed and they felt closure might have been ill advised given the pulmonary htn and TR. Although there doesn’t seem to be any question about my need for tricuspid valve repair or replacement I remain concerned about closing the ASD. I need clarity on this before proceeding with scheduled surgery. I will hear from them in a couple weeks. They do robotic repair of tricuspid valve as well as ASD which would lessen infection risk and pain. Not sure if both repairs can be accomplished at same time robotically. That would be great.
Your comments convinced me that pursuing the additional opinion with a Clinic that is taking the tome to do their own interpretations of my multiple CT scans, echocardigrams and rt heart cath is the right thing to do. This is serious business and I just want to feel confident that doctors very experienced with my problems are looking at my history.
So sorry you had such a hard time of it. I will most certainly take the lifting restrictions very seriously. Thanks for the advice.
Hi Sallie,
How far have you come with this? I imagine the tests and consultations are time consuming, but it sounds like you still had a ways to go almost a month ago.
I hope that this can safely and successfully happen for you!
Wishing you well,
SK