My humble opinion as a heart patient and retired nurse is yes, you need to write a letter. Maybe to the hospital administrator and possibly even to the state of MI hospital association and/or the MI medical society. Again you may get a form letter as an answer but your letter should be kept on file by them and you will feel better. Since Paul is a nurse guess you have to think about whether or not this will jeopardize his career. But, I don't know where he works, so it may not matter. I know you are recalling the scare with your son's experience and some of that fear is still with you. Hope I haven't been to forward with my answer, but this journal is a place where we can feel free to express ourselves with the intent of helping others. You can find me by clicking on the Journal Central and typing in "Fran" to see my journal. Please leave me a message in my guestbook to let me know what you decided to do, if anything. Praying about decisions always helps me.
Hello Paul & Jennifer. Welcome to HVJ, a great place to read everyone else's experience with heart valve surgery. I'm glad to see that you got a 2nd opinion - I did the same & it convinced me to get my surgery done sooner rather than taking a "wait & see" approach. On July 21, I had aortic valve replacement surgery along with a bypass of my narrowed aorta. Read our journals, visit our guestbooks & ask questions. Best of luck to you both - Joy Vera
I am so happy you got a second opinion and it sounds like good news so far! I know how frustating it can be when you express great concern over something and the doctors just act like it's no big deal. For the most part, we here are not doctors and it seems like they tend to forget that... Good luck - I'm praying for a great outcome for you both!
So glad to hear you got the second opinion and it sounds like good news! Diana is right, this has to be the best website I have found. And the people are amazing! We often refer to each other as our HVJ family. Best of Luck and prayers are with you,
Welcome to the best website around. This has become my home away from home and the people here are absolutely wonderful. You will get lots of information from people that have been there and done that. It really helps when you are going through the process of surgery.
I hope that you are able to find a doctor that will take his condition seriously. You have to be your own advocate and sometimes make things happen. Insist! You only have one heart, one life. I wish you and your husband quick resolve. Hang in there, we are all here for you.
Thank you Ricki, I had to look over the paperwork again to see how large his is and there is not a size listed. In fact, the report reads that they recommend the TEE in order to measure it correctly. All over the report it mentions the TEE or agitated contrast testing so I'm increasingly angrier at the cardiologist's wait and see attitude.
We live in the thumb area of Michigan, an hour from Beaumont hospitals and an hour and a half from U of Michigan medical. If he needs surgery it will be at a large hospital, I wouldn't trust the hospital here even if they did do this type of surgery.
Thanks for the support. Today has been very emotional, I feel like tomorrow we will have a game plan and I'm afraid.
Welcome to HVJ. I had my aortic valve replaced at the Cleveland Clinic in May and the support I received from everyone on this site was invaluable as I prepared for surgery (and, of course, as I recovered.) I'm not sure where in Michigan you are but I get the idea it's not in a city with a major medical center. I'm pretty much in the same position and what I learned as I was getting diagnosed this past winter is get thee to the biggest, bestest medical center you can find. The difference in the medicine being practiced in my local area vs. what's happening at the big places is remarkable (and scary). I was very pleased with my surgery at the Cleveland Clinic but that is certainly not the only place to find excellent treatment.
I know the aneurysm word is scary but to medical people, it's not as scary as it is to us. From what I understand, most doctors will not operate until the aneurysm is at least 5 mm (and some say 5.5). To me, 0.5 is too big but what do I know?? I didn't have one (happy to say) so I only needed a new valve.
Good luck with Paul's tests on Monday and feel free to ask any questions you might have.
Fran and Kellie thank you for the welcome. I am really hoping this second opinion on Monday does the further testing so that we know exactly what his future holds. After reading so many journals I no longer feel like he has been handed a death sentence. The anuerysm word scares me. I will update on Monday when we get home. Thanks again.
Hi Jennifer and Paul
You've come to the right place for support, help and possibly some suggestions from those of us who have been down the road. This past March I had my surgery at the Cleveland Clinic and got a bovine mitral valve and a repair of my tricuspid valve. I assume you found this site because you read Adam's book, if not, please read it. So much excellent info there. Lori's death was shocking but I have to feel that she wouldn't have wanted anyone to not have their surgery because of her untimely death. The thought of living with these heart flutters and anxiety is not a positive thing. Besides there's 4 children to be loved and cared for. Please read some of the journals and you'll learn that some of us sailed thru our recoveries without any hitches and a few of us had some bleeps, but we're here and we're healthier and stronger.
Best wishes from FL.
Thank you both for your messages. He has an appointment with a new cardiologist on Monday at 3:15. It is with a Doctor in the Beaumont system, a much larger hospital.
Jacki, we have so much in common. I wish heart valve disease in husbands wasn't one of them! I am reading the journals here but reading about that woman's death was pretty upsetting. I think I'm in the stage of "it's not fair" right now and reading about her death brought those 3 words to my lips over and over.
Welcome to the family. Seems like you have alot of questions that need to be answered by a good doc. My husband Sean is also an RN and I stay home with the kids. He had surgery 4 weeks ago and doing good. Hope all goes well with him.
I apologize, I didn't realize it was Jennifer typing. You will get so much support and helpful information on here. My first thing would be to suggest you definitely find a different dr and get a 2nd opinion...
I would copy and paste your story in a word document so you don't have to type it all over. Then delete this account and start again. In the blank for last name just put your initial.Hopefully this will work, if not contact Adam Pick and he will know. Welcome to HVJ and look forward to reading your journey.