When did you know it was time?

[mom2angel]

Sorry if this is the most asked question. I'm just looking for stories here. I'm ready to fire my cardiologist and find a new one. I feel it is time for valve replacement with a larger mechanical valve. I've finally been having symptoms for the past few months. I feel like my cardio and I are just not communicating well. Of course, he's not living with my symptoms, and I'm not much of a complainer, so I probably just need to call him today and stress how much my symptoms are affecting my day to day life. That's my plan.
The last time I had this surgery, I was 13. I have all the same symptoms now, except the cough. My ankles are also swollen, and I don't remember them being swollen at 13. Just curious how everyone else got the Dr. to give them the go ahead for surgery. Thanks

 

[honeybunny]

Has your cardio ordered any test? An echo might reveal an issue that would prompt surgery. That, and a TEE for a closer look at my native valve, determined that I would need surgery within a year. I had it four months later. I had shortness of breath but that was my only real symptom.

 

[Protimenow]

In my case, I knew for 20+ years that I would be needing the surgery. Things continued to get worse through the years. I didn't have as much endurance as I'd have liked, my fingers didn't 'pink up' very rapidly after squeezing the tips. My left arm blood pressure was always lower than that in my right arm.

I had a good job, good insurance, and finally asked the doctor 'how sick do I have to be (to need the surgery)?'

Perhaps I could have gone a few more years, but I would have continued to damage my heart -- damage that no new valve would reverse. At age 41 my surgeon and I decided that it was time. I almost looked forward to finally getting this resolved.

In your case, maybe you SHOULD fine a different cardio. If it's negatively impacting your life, and perhaps putting too much stress on your heart walls, a second opinion (and possibly a second surgery) may be a good choice.

 

[dornole]

When I was coughing up blood, had to sleep upright in a chair, and couldn't go up a flight of stairs without resting. But, nobody knew I had a heart issue and I was only being followed by a gynecologist due to my ignorance that this was not a suitable general practitioner. Should have complained louder, earlier and much more clearly.

 

[ottagal]

You know your body the best. If your cardiologist's decisions aren't sitting well with you, then I would be definitely going for at least a second opinion. All the best. Thinking of you.

 

[mom2angel]

Thanks everyone. I made a phone call to my cardio's office today, and I think I got my point across. I basically had to be blunt and tell them that something has to get done or I will go elsewhere. They did refill my Lasix prescription which ran out 2 days ago. I took one this afternoon. That should help me breath better again for the time being.
The nurse said the Dr. Is trying to hold off as long as possible, because every surgery comes with risks, and this one is riskier since it's my third OHS. I just think he didn't realize how bad my symptoms have gotten. Also, I just want communication. If they think there's a better way to buy time, like some meds or something, I just want to be aware of that.
They did a stress test 2 1/2 weeks ago, but I'm still waiting on the Dr. to look at it. That right there is part of my frustration with him. I'll wait to hear from him about my call today. I see another cardio on the 30th. If I like him better, I might just switch. Thanks for your stories everyone.

 

[mom2angel]

I've known for at least 8 years that this was a possibility someday. My artificial valve isn't large enough. The pressure gradient is around 8 to 10 when it should be around 3 or 4. So, they've always told me that I need to tell them when I start having symptoms and they will do surgery. Symptoms have shown up over the last few months, and keep getting worse. So, now I'm just thinking we should act, and I feel like Im getting the run around. I truly believe today's phone call will get the ball rolling though.

 

[pellicle]

Hi

...The pressure gradient is around 8 to 10 when it should be around 3 or 4. So, they've always told me that I need to tell them when I start having symptoms and they will do surgery. Symptoms have shown up over the last few months, and keep getting worse. So, now I'm just thinking we should act, and I feel like Im getting the run around. I truly believe today's phone call will get the ball rolling though.

don't accept the "run around" ask for actual answers as to "why not" (if that is what they're saying to you) and no matter what seek a second opinion. Don't just threaten them with such, just go do it.

Then you'll have a better understanding ... and like Ottagal says "you know your body" ... and its not as if you're a newbie and its all "new to you".

Best Wishes

 

[Northernlights]

Mom2angel
I agree you need a second opinion, but I suggest rather than another cardiologist you ask your cardiologist to refer you for a surgical consult with the Cleveland Clinic ( you could also use their remote consult service). Since the question is surgical risk versus waiting it makes sense to have a surgical opinion. A third mechanical valve replacement obviously does carry risk, but much of the risk of surgery lies in the presence of heart failure. Since you already have diastolic dysfunction there are risks too in leaving the surgery late so it becomes irreversible. Surgery doesn't get less risky with waiting. Often we minimise our symptoms even to ourselves but when doctors ask how you are they really want to know!

It would be sensible anyway for your valve replacement to go to a surgeon very experienced in reoperation to reduce the risk as much as possible (it isn't a job for a local hospital!) so I suggest Cleveland. In these circumstances you need to think of the best despite the logistical inconvenience. At the least they can tell you whether they think it's time.
All the best

 

[mom2angel]

Thanks pellicle. Northern lights, that's great advice. I've always done everything local, here in Nebraska, except the brain surgery at the Mayo Clinic. My gut has been telling me I need to venture out this time to a "better" place, someplace more known for this type of thing. Thank you so much for the suggestion. I will look into that. This time, being an adult and having kids of my own, and the dr speaking of more risks, makes it all too real, and makes me want to go at this a different way than before. Thanks agin. I will check out the Cleveland Clinic.

 

[Agian]

M2A, a gradient of 8-10 doesn't sound high.

 

[pellicle]

Northern lights, that's great advice. I've always done everything local, here in Nebraska, except the brain surgery at the Mayo Clinic.... Thanks agin. I will check out the Cleveland Clinic.

I just want to reiterate how good that advice is. It echos the advice I was given by mu surgeon in discussion about my third OHS. I went to a hospital for my 3rd that was the best in my state.

You should consider this as if your life depended on the outcome.

Best Wishes

 

[Superman]

As far as a second opinion goes - I would still get one. You don't want to 'threaten' your cardiologist into action. Maybe that's not what you intended, but it can read that way. One might still wonder if they were doing what they believe was the right thing to do in your circumstances, or simply acting to avoid litigation.

Best to get an impartial second opinion from another cardiologist, or surgeon if that's and option without a referral, and see what their thoughts are about your situation without telling them of any dissatisfaction or, "leading the witness", so to speak.

 

[epstns]

It sounds like m2m's main issue is one of communication and focus on the part of her cardio. To me, the lack of focus and the refusal to communicate are critical issues and, in my case, would trigger my move to a different cardio. I just don't tolerate that sort of behavior when it comes to critical elements of my health. I am not abusive or nasty, I just find a doc who is more in tune with my needs and style. I did "fire" my first cardio for reasons like these (and a few more).

On the other hand, if the doc is available and will confer with m2m, I would ask point-blank "What are your criteria for intervention and where do I stand against each?" There may be valid concerns for which the doc is being cautious, but unless you know what they may be, you and the doc cannot have a dialog about how important each may be to you. . . the patient.

These are major life issues and the decision process belongs equally to the patient and the doctor. . . not just the doc.

{OK. . . now I'll step off my soap box.}

 

[mom2angel]

Steve, I agree with everything you said in your post. I also have good news. On Wednesday, I got my old nurse involved. Cindy was my nurse from the age of 2 to 35. Two years ago at age 35, they changed me to a different doctor, the one I'm not thrilled with, so she is no longer my nurse. However, she knows me well, and she's great. So, she said she would be my advocate and talk to Dr. Cramer for me. Two days later, on Friday, I get a call from her saying they will get me in for surgery. Yay! Now I have appts for an echo, CT Scan and a Pulmonary Function test on Oct 31st. Then I meet with the surgeon on Nov. 9th and we should set a surgery date then. I'm so happy to finally have the ok. But it's also becoming very surreal now. I am 37 with a 10 year old son and 5 year old daughter. The last time I did this, I was 13, in 8th grade and had no one to take care of but myself. This time, I'm doing this as an adult with many responsibilities, so it's very different this time. We thought the valve I had now would last forever, so we never even planned for this surgery. But, it needs to be done. I'm on Lasix, and it helps me breath a little better. My feet and abdomen have swelled with fluid, so my body is saying it's necessary. I'm glad to have all of you who have been through this as adults.
i'm not the least bit scared. I've done this twice and the brain surgery and C-sections. Just glad to be getting it done. I'm not a tv watcher at all, except when I'm in the hospital. I'm a music lover and always have a radio on, but I despise tv, unless I'm laid up. One of my favorite shows from a kid was WKRP in Cincinnati. I own the complete 1st season. There are 4 seasons. I recently purchased the last 3 seasons off Amazon, because I was hopeful for an upcoming surgery. They came in the mail last week. I am not opening them until after surgery. I'm looking forward to watching them while laid up. They will bring back so many memories. Also, I have videos of Country's Family Reunion. It's a show where a lot of older country music stars get together and reminisce and sing. I have several videos of them that I haven't seen because I'm not one to sit and watch TV. I can't tell you how excited I am to catch up on them after surgery though. Praying all goes well. Thanks for all the advice and comments. Happy Sunday!

 

[epstns]

m2m - I love it when things work out so well. It sounds like your nurse advocate knew how to bridge the communication gaps. One more place where nurses are so special.

 

[SumoRunner]

In the late 80s, I asked my cardiologist when and how he would know it was time. He said I would know before he did. I was a runner for a long time and he was aware that I was rather competitive about it. He knew it would come to a matter of athletic performance. Some years later there was a 15Km race that I ran every year for 10 yrs, and I performed terribly. There was nothing wrong in my training regimen leading up to it, no incipient injuries, nothing that might explain why I did poorly. Afterward, it took far longer than usual to recover and feel 100%. So my wife forced me to go see the Dr again. The minute I walked in, with her by my side, since she never went with me for annual checkups, he knew it must be time. After an echo test, it was confirmed and the surgery was scheduled for a few months later.

I returned to run that 15K again, 21 times more, plus another 300+ road races. I'd still be doing them today but for arthritis that crept up on me. Now I just walk an occasional 5K. The heart is still in perfect condition 26 yrs after.

 

[Superman]

Good luck as you navigate this process. I hope all communication is clear and there are no surprises for you.

Your kids will do great. They can help take care of mommy for a bit. I had four kids, one infant daughter and three boys 3, 5, and almost 8 years old when I had my last OHS (five kids now - so I must have recovered okay). They were great. I spent time reading to them in daddy's recliner. It was a big win to join everyone at the dinner table again.

 

[dornole]

Glad you have everything nailed down. Def line up help with the kids - I hope you have a good co-parent, but also line up rides, extra day care if needed (is your 5 year old in school?), an after school nanny would be great to help with driving and even getting dinner ready.

 

[DachsieMom]

Yes, I had young children, too. My friends started a meal train online. It really helped (also, avoids people dropping off three pastas in one night!). Best of luck.