Sometimes I feel overwhelmed and frustrated

[hannahsmom]

Hello,

We recently had to take Hannah to her primary care doctor or an unrelated illness and the doctor filling in (who has seen her periodically) listened to her heart and said "Oh she has a murmur?!" This frustrates me as they sound so alarmed which scares the 13 year old sitting there. Shouldn't this Dr be reading her chart before going into the exam so this it not a surprise to her?! Hannah was just seen by her cardio in July and everything looked great. I understand that the murmur can still exist after surgery especially with a mechanical valve. It just seems that many Primary Care dr's seem uninformed when it comes to her type of condition. Does anyone else notice this when they are seeing their primary care or other doctors? I find this especially frustrating as her cardio and her primary care are both Cleveland Clinic doctors and have full access to her records. I am wondering if I need to call the dr's office and request that they be more informed and a little more sensative to her situation. She gets really tired of hearing that her type of surgery is for "old" people. The last thing a kid wants to hear is that they are weird!

There are days that I have such a positive outlook and really feel positive that my baby girl will live a long fulfulling life. Then there are days that I am overwhelmed with anxiety and fear for her future. Little things like this doctor's comment trigger that anxiety.

I am basically venting here because this is the only place where I feel understood as a heart patient parent.
I work very hard to stay positive for Hannah's sake, but sometime internally I am losing it! Any advise on patient/parent's/loved ones on dealing with this anxiety?

 

[dick0236]

. .........She gets really tired of hearing that her type of surgery is for "old" people. The last thing a kid wants to hear is that they are weird!

There are days that I have such a positive outlook and really feel positive that my baby girl will live a long fulfulling life. Then there are days that I am overwhelmed with anxiety and fear for her future. Little things like this doctor's comment trigger that anxiety.
?

I understand....and, thankfully, as she matures these types of comments will lessen....but they will always be scary when made by medical professionals...who ought to know better....but doctors, like most of us, often "put their mouths in motion before they put their minds in gear"....and I've learned to remind them of their insensitivity. I see nothing wrong with "calling a doc out". Most recently a young cardio, who was my new regular cardio, told me "you are a medical miracle" and I reminded him that, while it might be true, I didn't need to hear it from a doctor.

You have every reason to be positive that "my baby girl will live a long fulfilling life".

 

[escargome]

Well I sure hope that Hannah grows up to understand and forgive people who put their foot in their mouth and then chew. Anyway, you are doing a fine job with her and yes there will be times when you will go into a closet to scream. About 2 years ago, I had to go to the ER for an unrelated to heart issue. The ER doc, who by the way was quite young, said "My God!! you have a murmur". I looked at him square in the eye, knowing that a slight murmur had remained after my AVR and said to him "Thanks for the info doc. I will tell my cardiologist, who will likely just laugh" "However, does your mother know you are playing doctor"? He was quiet for a while, then said, I guess you already knew about your heart... So just keep doing what you have been doing and your little girl will certainly grow up to be a compassionate understanding woman.

 

[Freddie]

First of all don't sell yourself short, your doing just a fine job with Hannah.

Escargome (Chris) is right on the money when is comes to doctors; The ER doc, who by the way was quite young, said "My God!! you have a murmur". I looked at him square in the eye, knowing that a slight murmur had remained after my AVR and said to him "Thanks for the info doc. I will tell my cardiologist, who will likely just laugh" "However, does your mother know you are playing doctor"? I talk the same way when asked or told something that I already know from a doctor.

If this is to ever happen again and a doctor say's "Oh she has a murmur?!", just simply respond 'duh yea, didn't you read it in her file?' You'll see how quickly you get the respect from that doctor and the lasting impression you will give to your daughter. Being 13yrs she'll think you're pretty cool and tough for informing the doctor and it will be less upsetting for the both of you.

 

[hannahsmom]

Thank you all for your responses. It's nice to hear I am not the only one who is bothered by this. She doesn't say it bothers her but I know her faces and it does bother her too.
I think I will make that call and kindly ask them to be more thoughtful.

On a more positive note, I just got home from watching her cheer at the first football game of her 8th grade year. Seeing her out there with her friends living it up is the highlight of my life. So I end this day feeling a lot better than I did when it started.

Thanks for the support.

Words can explain how much I appreciate it.

Kelly

 

[Agian]

Most recently a young cardio, who was my new regular cardio, told me "you are a medical miracle" and I reminded him that, while it might be true, I didn't need to hear it from a doctor.

It almost sounds like he thinks longevity with an artificial valve is rare, or that you're living on borrowed time. A comment like that would irk me as well.

 

[pellicle]

Kelly

I read this last night and didn't know what to say. This morning I see many wiser words than I could have said. I am gladmtomhave read that it helped you.

You and I are different (and as the parent of rather than the sufferer of your situation is also different to many of us here), for I was the child and you are the mother.

The world I grew up in was vastly different to the one now. There was no gold star on the wrist, there was no worry about my feelings. These are all part of a modern world that I don't understand (and perhaps because of that) don't agree with. So with that in mind let me relate as best I can.

My mother was a tough woman. She grew up on sheep farms just after WW2 and knew what hard work was. Her first child died soon after birth and as I have been told and come to understand loved and cherished me from day 1 (and even throughout my teen age years) {which I am certain were not easy if you knew me then}.

It must have been a shock when I was 5 to have found her baby had a heart murmur. She was not a science educated woman and the threat to her child must have been immense as she saw it (having lost one but 7 years earlier). I do not know the ways she felt anguish or many of the tears she cried (although I do know some). So incan not pretend to known what you feel.

Son as the child I will tell you a little of your daughters side through the lens of time and mature hindsight.

As I said, I was a child I can not know what she went through, but she never once complained to me aboit my heart or wished for anything else. Instead she directed my life to make the most of it. She knew in her heart that I would not be served by a life as a labourer or worker, so chose to assist me to develop my life in a career in sciences. For I was a child of science to be sure.

For my own part as I grew up I was matured INTO the environment of yearly trips to the capital city to have checkups, being prodded and listened to by an endless stream of doctors and having new and different machines attached to me almost every time I went there.

I strangely never resented any of this because no one told me at I should. I always allowed doctors (well not the cute women doctors with "thickly hands") to examine me and listen.

As I grew into an adult in considered it part of my role, to help other doctors learn so that they could help others.

I believe that we come to understand this world as it is taught to us. Only later can some more reflective of us re-learn it as it may actually be. So I encourage you to consider teaching and guiding your child to not resent these things, but to accept them and to make that who you are and what is your life. Her life can not be as you wished it beforehand.

As to venting I encourage you to vent here. I for one will listen and I'd you want it, will make observations. I know that sometimes people don't want much comment, as its "not about the nail" (by the way I encourage you to YouTube search that title).

Mum was beside me through two heart surgeries, and my wife through my third. It has been a blessing to have such wonderful strong women in my life.

I know they were not perpetually strong like some fiction, and they cried on my shoulder and sobbrd beside me on occasions. But that didn't make them weak, to me that just made them human.

 

[pellicle]

It almost sounds like he thinks longevity with an artificial valve is rare, or that you're living on borrowed time. A comment like that would irk me as well.

I used to think that after my 1992 surgery that I could come to think of myself as cured. Of course that was comfortable for a time. The reality is however that I am not. For sure we all get older, and for sure we all have one thing or another to challenge our health. But it is a mistake to think of ones self as "normal" for we are not.

Our repairs have given us much over the life we could have expected just fifty years ago. We can do much towards leading "normal lives" but as the decades pass it becomes true for most of us we will not live exactly as we would have had we not had the surgeries.

The surgeries do knock some thing out of us, the later in life the more.

My point is to understand the hand you have been dealt, don't risk it by bluffing it up, and (try to) love every minute of your time here.

We are all living on time loaned to us.

 

[hannahsmom]

Pellicle,

Thank you for providing the child's point of view. I too follow the same ideas as your mother. All you want is for your child to be happy. Hannah was diagnosed at 6 months old, so she knows no different. We encourage her to live a normal life doing the things she loves. Before surgery she was a dancer and a swimmer. Since surgery she still dances and swims and has since made the cheer squad. My husband, her father also has BAV and will one day require surgery. We have accepted this as their paths and don't let it hinder their lives and don't dwell on it. I put on an amazing front. After Hannah's surgery my mother once told me I should win an Oscar for my "strong" performance. Friends and other members of the family kept saying how strong and positive I was, only to have my mother tell me I should have won an Oscar for my "strong" performance. As my mother, she read right through me.

My main frustration with the dr's visit the other day was that we went in for possible strep throat and the dr couldn't even take 5 minutes to read her chart and see that she is a heart patient who has valve replacement surgery. Instead she made a comment in a tone I could see scared Hannah. An hour later I was dropping her off at a friend's end of summer sleepover and she went about her life.

In addition to the two heart patients in my life, two of my brother are epileptic. One who has severe epilepsy and to the point that he is on disability, lives with my family and I. I watched my big brother go from a happy normal 16 year to a depressed, introverted, and pessimistic person in the blink of an eye. Between his condition and the supposed side effects of his medication, he is a completely different person. While I know my mother did not mean to, she made no effort to hide fears about his condition and I believe this effected him tremendously. When Hannah was disagnosed I made it very clear to her that was not how we would be with her and that I needed her to do the same. She has thankfully done an amazing job.

There is no doubt her condition may cause her life to have it's downs but we do our best make sure it's filled with mostly ups!

 

[Agian]

What's normal Pel? My friends used to feel sorry for me because I was on BP tablets in my early 20s. I don't doubt that OHS knocks the stuffing out of people. But I was perfectly normal until I was told I'll need a valve replacement almost three months ago. Now I'm a fragile 'heart patient'.

Look at some of the folks here: A competitive weight lifter, a young man who works with sheet metal, the fellow from Canada looking forward to his patrols, despite the warfarin.

 

[pellicle]

What's normal Pel? My friends used to feel sorry for me because I was on BP tablets in my early 20s. I don't doubt that OHS knocks the stuffing out of people.

Well I've met normal people ... never got on well with them.

Look at some of the folks here: A competitive weight lifter, a young man who works with sheet metal, the fellow from Canada looking forward to his patrols, despite the warfarin.

You seem to have misunderstood me. It is a complex idea, but without writing an essay here "compared to what you could have been if you didn't have the heart valve issue"

Of course the younger you are the better when you have surgery. People who choose a mechanical and have their valve done early in life probably have the best chance. Those of us who have tissue early, have aneurysms to deal with (creating more surgeries) and just the sheer complications associated with these things make a difference. Like the guy who is the weightlifter.

There is much more than just the tick box item of a surgery and a recovery.

Now I'm a fragile 'heart patient'.

I did not say that, nor is it what I mean. I lost my dive licence after my surgery in my late twenties because there could be thoracic adhesions that could tear my lung from the surgery. There is much to learn my padawan

And warfarin wasn't even on my list...

I continue to live my life as near as I can to the way I lived in my twenties albeit as a fella in late forties. But just like old sports injuries have a way of catching up with you, so too does all this

 

[tom in MO]

Normal is a setting on the washing machine It has nothing to do with people.

Remember doctors are people too. They have good days and bad ones. Even my best doctors have days that they are not as good as my worst. My best doctor, when it comes to communication, is chronically late, sometimes by as much as an hour.

If I were you, since he was a replacement and not your primary doctor, I would let it slide.

 

[pellicle]

Hi

Before surgery she was a dancer and a swimmer. Since surgery she still dances and swims and has since made the cheer squad.

great stuff

I put on an amazing front

lookkng back as an adult I think my mum did too

Instead she made a comment in a tone I could see scared Hannah. An hour later I was dropping her off at a friend's end of summer sleepover and she went about her life.

well, I think that will all be past and gone as she will take her cues from you ...

I watched my big brother go from a happy normal 16 year to a depressed, introverted, and pessimistic person in the blink of an eye. Between his condition and the supposed side effects of his medication, he is a completely different person

I have a friend friend that has gone a similar way. Her confidence was rocked when she had a siezure as a younger woman and woke up with minor injuries at the bottom of the steps. A Dr happened to say "lucky you didn't get hurt, if youd been riding your bicycle it could have been worse". Her mother agreed with the doctor, wanting to protect her.

From that day on she just lost all confidence and gradually withdrew. A siezure could happen any time. It has been disheartening to witness. Noone seems to have been able to help her shake it, and now 20 years later its probably impossible.

There is no doubt her condition may cause her life to have it's downs but we do our best make sure it's filled with mostly ups!

Life has its ups and downs, you just dust off and move on.

My point is that you should just live and be happy, for only a fool knows what will certainly happen.

It is wonderful to hear how you (like my mother) are making her life full, happy and fear free.

 

[kimcdougc]

Pellicle,

We are all born dying. None of us knows when our time is up here on this earth. I have never in my life (and I am 53) looked at the cup as half empty but half full. Doom and gloom are not living. You gotta look at life with a smile because all we have is this minute, this day. So I choose to look up and forward now matter how long I have. Just my 2 cents.

Hannahsmom,

You are doing a great job with your daughter. She will realize as she gets older just how strong and positive you are. She will also learn that Drs. don't always know best. Good thing she has you on the sidelines cheering her on. She will be and is one awesome young woman! Being positive is a lot to do with OHS patients battle and you are doing great!

Kim

___________________________________________________________________________________________________________________

AVR May 23, 2013 at 53 years old female. On-x 21mm valve. In the waiting room 10 years. Dr. Glenn Barnhart, Swedish Medical Center, Cherry Hill location, Seattle, WA.

 

[pellicle]

Pellicle,

.... You gotta look at life with a smile because all we have is this minute, this day. So I choose to look up and forward now matter how long I have. Just my 2 cents.

I believe that is more or less what I posted ... yet you appear to be correcting me.

I wrote:

Life has its ups and downs, you just dust off and move on.

My point is that you should just live and be happy, for only a fool knows what will certainly happen.

It is wonderful to hear how you (like my mother) are making her life full, happy and fear free.

 

[Mom2izzy]

Sometimes I feel overwhelmed and frustrated

I was diagnosed with mitral valve prolapse when I was 7, and didn't have it fixed until I was 40. I don't know if I ever went to a Dr. that didn't make some ridiculous comment. As a kid, if they wanted to listen again, I made them pay me a nickel! As I got older, every time someone new was preparing to listen to my heart, I would warn them about my noisy valve. I would tell them I had a cardio keeping an eye on it, and that it wasn't as bad as it sounds. When I did this BEFORE they listened, I got way fewer "stupid" remarks. I think I started this after one doc was bound and determined that I needed to go in and have a recheck immediately because "it must have gotten worse...that is not OK". It think it is helpful to give a heads up to the docs, so they are less surprised. In an ideal world they would all have time to read a patient's history prior to the appointment, but it won't always be the case.

 

[Superbob]

Lots of great comments here -- you obviously are a great mom to Hannah...just wanted to toss in my own experience (though it may not be terribly relevant) that when I was a young man in my 20s, an internist told me he heard a heart murmur and said I would eventually need AVR (I did, at age 63). BUT in all those intervening years, many other doctors listened and told me they did not hear a murmur. Indeed, you would think they would read the full record and charts before piping up (and especially when a child is the patient) but doctors are busy folks and sometimes they speak without full information. All best to you and your precious Hannah....