I’m so sorry, Jennifer! I know how frightening this must be for you. And frustrating. Our 7 month preemie daughter, 24 years ago, was born with a hole in her heart. At the time, they told me that it was fairly common with preemies, and that it most likely could be repaired with a certain medication. And it was. I can’t help but wonder why it can’t be used on adults with a similar problem, but it apparently can’t . I wish I had more information or experience with this, but mine was different. I sincerely hope that you can find the right surgeon and surgery to finally correct this for your husband! God bless!

https://my.clevelandclinic.org/health/treatments/11627-patent-foramen-ovale-pfo--catheter-based-procedures

https://youtu.be/jfGo7bSqCpo

The advances in medical technology are amazing... They discovered my dad had a hole in his heart when he around 9 years old, I think. Not sure what else was involved but he was kept in bed for an entire year. :( Wishing you and your DH the best of luck!

I have no info or experience but wish you and DH success in researching and finding the best surgeon. It always amazes me the breadth of knowledge and experience here.

The "hole in the heart" that preemies or babies are born with is different. That is the PDA or patent ductus arteriosis. This is the opening that allows for fetal circulation within the womb, skipping the lungs, since the mother is oxygenating the blood.

At delivery it should start closing and be closed within the first few days of life. If it doesn't, they give Ibuprofen to assist in closing of this opening. That is the reason for no Ibuprofen in pregnancy after 28 weeks gestation.

LynnNM - I can only imagine what a stressful time it was for you after having a preemie and then finding out she had heart issues. I'm glad to hear she healed up and is doing well. Is she in Nashville?

3katz4me - it was your comment on Roarah's post that prompted my post. I had tried to PM you. I think the part where you say it's "uneventful" is what's throwing me about this entire procedure. It's heart surgery and I can't wrap my head around the nonchalant attitude I get from the Dr.'s and nurses. There were some missteps when he had his stroke so maybe I'm being too vigilant about his care now. I appreciate your comments and I hope your husband is still doing well.

Mdln! I consider myself pretty good on the internet but your research blew me away. The Cleveland Clinic site and their video has to be the most comprehensive information on PFO closure I've received to date - and that includes at the Dr.s office. Thank you very much.

Party_music50 - Your poor father. How awful for a 9yr old boy to be kept in bed for a full year. It must have driven him nuts, and in turn all the nurses, I'm sure. When he got out I hope he made up for lost time in spades.

DLM - thanks for your kind words. It wasn't until Roarahs quite scary post and the outpouring of support that I remembered I have an entire community online to ask. There are people on this site that will see and experience more things in their life than I could ever imagine.

RNmom - I knew ibuprofen should be restricted during pregnancy but I didn't realize why. What an odd connection but I sure am glad someone discovered it. Medicine and the practice of it is a wondrous thing.

Thanks to everyone for your comments and kind words. He will get better, that I'm sure of.

I have nothing to add but prayers for you and your husband.

Glad you found the information useful. Cleveland Clinic ranks #1 in the US for cardiology. https://health.usnews.com/best-hospitals/area/oh/cleveland-clinic-6410670/cardiology-and-heart-surgery

This is the same cardiologist, but he goes a little deeper into the research. https://youtu.be/3isa-hL7hrY

DH was born prematurely. Had heart surgery at age 6 and again at 59 to repair a hole in the atrial septium. From the imaging, It didn't appear to be a defect in the septium, but something much more complex. That said, the hole was in a difficult location. I sent you a message with more details about what we went through. As scary as it sounds, we're doing well now. Feel free to ask questions.

mdln is correct about Cleveland Clinic. We considered that and Mayo, but DH insisted on staying local. Fortunately, our hospital has a heart center that is outstanding. He made the right choice for us.

You may not have a choice, but try to find a surgeon who works on adults with congenital defects rather than one who mainly works on children.

Jennifer - is your DH actually having open heart surgery to correct the defect? My DH did not have surgery. He had an interventional cardiology procedure done with conscious sedation. My understanding is that most cases these days can be corrected without surgery. That was not the case in the past and perhaps your DHs case is different than mine.

Deliah - Thank you for the prayers. After the last year, we will happily accept them all.

Mdln - The doctor in those videos presents everything so well. I really appreciate the links. We have chosen University of Kansas Medical Center. It's #24 on the list, lower than I expected, but our Dr. specializes in PFO closure and comes highly recommended.

Moxie - Thank you for the PM and sharing your story. My DH, too, wanted to stay local. I was lucky enough to find someone close by who specializes in PFO closures.

3katz4me - Oh, no, he is not having open heart surgery. That's just me using the wrong terminology! Thanks for letting me know. I need to be more careful, especially when I am talking about medical issues. He is supposed to have the procedure like your DH. Again, I certainly appreciate your comments & support.

Glad to hear he’s having the interventional procedure. It sounds terribly frightening but I think they do a lot of these. All of DHs providers were very reassuring about it and it was truly uneventful. He had it done in the cath lab and went home the same day. How old is your DH? When is he having the procedure?

Just making the list is a good sign! Glad you liked the videos; I agree he explains things well.

My daughter was born with two holes in her heart (ASD and VSD). She had open heart surgery at 4 months of age to repair the defects. This was at Children’s Mercy in KC. It was a very scary time for us (she was our firstborn) but it is amazing what doctors can do these days and in our daughter’s case, having the surgery made a night and day difference in her health. She is now 11 and a very healthy girl. Your husband will be in good hands and remember, this is going to make him feel better.

"maybe I'm being too vigilant about his care now"

Jennifer, never apologize for being vigilant when it comes to health care and your loved ones. You're arming yourself with knowledge. It's love and caring.

In my opinion you can never be too vigilant about medical care. It's an art as much as a science and certainly not without error. I am always deeply involved in researching and evaluating my own care and who provides it as well as DH's.

HI Jennifer, I had a stroke on October 27 and a second one while in the hospital on Tuesday. Every test except the bubble study and an endoscopy like exam of my heart, TEE, was negative. It was determined I did have a large PFO if addition to an ASA. New evidence shows that having the two together and being under 55 is more risk for recurrent strokes. Because I had two strokes in a few days and after TPA and with aspirin and heparin shots so immediate closure was a viable option, if insurance covers it or not I am not sure but certainly hope so:).

I had two catheters, one in each leg near the groin on Friday. I was awake during the procedure and I was discharged on Saturday. I was on vacation in Orlando when I had my first stroke but was well enough to make the journey by car home to ct. in two 9 hour with many bathroom breaks drives and was home last night.

Most cardiologists think closing the hole is the way to go after stroke but my neurologists all like the warfarin route first. Studies are mixed on if closure helps prevent or not but the most resent study I read by Harvard was that closure had better success at prevention than warfarin treatments. even with a PFO I am still considered cryptogenic, i.e. they still do not know for certain what caused my strokes. So PFO closure is still considered controversial by many health providers.

Good luck to you both.

link to Harvard article https://www.health.harvard.edu/heart-health/after-a-stroke-with-no-clear-cause-a-heart-repair-may-be-in-order

Xo

Research the doctor well and his success rate. Such information CAN be found. We did that with hubs hip surgery. All doctors are not created equal. The squeaky wheel patient often gets the best care. However, for hubs surgery, we were very pleased with the overall care he received, from every person at the hospital in addition to the surgeon. Very professional and their answers were research/science based, not dismissive. We were treated like adults who had a role in our own care. Hoping you find that!! Apparently it does exist!

3katz - We expect him
to have the procedure in December (fingers crossed!). DH really wants to get this done so he can
move on. Also, we have met our yearly out
of pocket maximum so if we can get it done in 2018 it will save us quite a lot.

Mdln – DH finally watched those videos and agrees they
answered a lot of questions we had. Not
that our Dr. isn’t informative, we just didn’t know what questions to ask. You don’t know what you don’t know, right?

MandyAnn – It’s nice to see another KC’r on the forum. I am sorry to hear about your daughter’s
heart issues. I can’t even imagine open
heart surgery on someone so tiny. Children’s Mercy has a great reputation and I’m
glad to hear the surgery was a success. Eleven is a fun age, isn't it?

MissMyGardens – Thanks for the encouragement. I try to be vigilant
but am also conscience to not be a pest to the Drs & nurses. They are good – it’s just that they do it
every day so I don’t think they understand the other side.

Roarah! – I have been following your progress on the other
thread. I was thrilled to hear you had your surgery were then healthy enough to
drive back home to be with your family. I’m really wowed at your recovery and so happy
for you. I know you feel like the road
is long but you are already making great strides. Thank you for sharing. You’re
story gives me comfort for DH’s upcoming procedure. Being awake for it sounds a little unnerving,
though. And as for insurance, my
hospital offered to do the procedure for $35,000 if I paid cash. Luckily insurance should pay but, honestly, I
would be OK paying if it meant DH would be healthy. He is my BFF.

PinkMtn – I’m glad to hear your DH’s hip surgery went well. That’s a major surgery and, if I remember
correctly, requires all hands on deck for the recovery piece of it. When DH had his stoke in January we found out
the hard way not all doctors are created equally. I’ve since researched this procedure to its
limits (and my own) and am comfortable using the University of Kansas Medical
Center.

Again, GW to the rescue. I started this thread very unsure about our
situation. Today, I feel confident and
mentally prepared for whatever comes our way. Thanks to everyone for your comments.