Question spurred by Coumadin thread

[Harpoon]

I was reading Raquel's posts in the coumadin thread about her husband's difficulties in adjusting to the radical changes in his life, the same changes we all get to fuss with before and after valve surgery, and it got me thinking about something...


Why do many (if not most?) men seem to have such difficulty facing and dealing with medical problems???

It's not just a valve related thing. I'm close to a few men who are having toruble coming to terms with medical problems. One guy I know has a rather large cyst/growth on his lower back that he's been complaining off and on about for a few years now. He won't see a doctor about it, he's afraid it might be something serious, like a cancerous tumor or something...

I keep asking, what if it's NOT? What if it's totally benign? And if it is cancer, what if it's easily treated???


Why do guys seem to dread facing up to changes in their health?

How many guys here had/have that problem?

If you don't mind my asking.


Thing is, I come from a slightly different perspective than most here (apparently anyways.)
I was born with my condition, I've always known about it, always been aware of it. Cardologists have followed me through my entire life. It's not a new thing. My first open heart surgery came only two months after I was born and the "spectre" of another surgery or other heart related complication has always been a part of my life. When my tricuspid valve started failing, I just dealt with it. I wasn't happy about it, but it was there and it was just something to work through. A problem to solve, not something to be ignored or hidden away or drive myself crazy over. I think my wife had a harder time dealing with the problem than I did.

Granted, I did have a rough time emotionally before surgery, but it was from a lack of ability. My brain and my body wanted and tried to do the things I've always been able to do and for about three months before surgery my heart just said "no."

That was hard, VERY hard.

I never tried to escape what I was going through though. No denial, no anger. it was just there, something to deal with. I'm next to religious with my medications. I talk to my cardiologist at least once a month, if not more often. I get all my blood work done and I'm tracking down other problems related to my experiences with the valve problem diligently.



Just trying to figure out why some guys just can't/won't deal with the problems they face.


It's a challange, a fight worth fighting. Why won't some guys fight?

 

[Karlynn]

Harp,
I think some of the issue deals with the emphasis our society (and most societies) place on men being the "strong ones". Any type of health issue might mean that they are having to admit they aren't as strong as they need to be/ should be. You've dealt with your health issue all your life. You always knew it was something to keep an eye on. But with "normal" healthy men, any glitch in the system means they might not be able to be what they think they should be.

So this might be part of the reason. Those that don't fall in that catagory think that Denial is a river in Africa. It's not a good place to be. One of our best friends is now just beginning chemotherapy after having a grapefruit sized tumor removed from his colon. He has a 60% probability of living 5 years. He ignored symptoms for over 3 years.

 

[Nancy]

Harpoon-

Joe has had his heart problems forever, it seems. He's had a murmur since his teen years when he had rheumatic fever. Like you, he just deals with it. He never gets too upset about getting something taken care of, just goes and gets it done. He wasn't supposed to live past 50, but here he is at 72.

He's outlived several men friends of his who were like the ones you are speaking about who wouldn't go and get help for obvious heart problems. One of those guys just keeled over and died instantly. His wife told Joe that he had had problems for many years and wouldn't go to the doctor. Another fellow was an avid runner, but also had been having heart related symptoms, Kept pushing himself when symptomatic and wouldn't go to the doctor. He died suddenly. And there are many more stories like that.

It is a mysterious thing. I've even heard some men say that they never go to the doctor because they think the doctor will be looking for medical problems to take care of. Well, duh!

 

[Sherry]

Harpoon,
What a great question. I'll offer another example of a reluctant man...about 9 years ago (2years before my own surgery), my 30 yr. old husband started getting pale, bruised, and worn down. He just chalked it up to a job change and numerous hours of work. About August of that year, he came home from work one eve, mumbled something about his vision, and went to sleep. The next morning, I could barely get him up and screamed at him that he was going to the doctor. When we got him to an immediate care clinic, they drew his blood which came out pink and watery. The doctor and I were absolutely shocked. She called the nearest ER, and when I got him up there, his Hemoglobin was 3.5, platelets were dangerously low, etc. At several nightmarish hours in the ER, a bone marrow test, etc. he was diagnosed with severe aplastic anemia. He eventually would receive a b.m. transplant and is doing fine now, but I will periodically still ask him, What were you thinking? He just says that he was really scared and chose to avoid rather than seek treatment. He certainly had someone watching out over him that year. No answer to your question, but I can identify.

 

[epstns]

In addition to all that, I think it is sort of a "guy thing," just like not wanting to ask for road directions. I think that as we grow older, we realize that life is not a guarantee, and the more of life we experience the harder we want to hold onto it (for ourselves and our families). Once we accept this, we begin to take a more active role in our own medical futures. At least that's how it worked out for me.

 

[ccrawford]

I think its also a dependancy thing. Most guys like to be independant and some take it to the extreme. The idea of needing help/getting help is pretty foreign so when illness occurs, its really a tough transition. I know I hated the idea of being in a hospital for four days and then needing some TLC during recovery. Once you get used to the idea, its not so bad. For example, I'm having some concrete poured today for a project, and its sorta nice that I've farmed it all out.

 

[tobagotwo]

I find it difficult to go to doctors for more than the base requirements.

I spent my adolescence trying to get free of adult control. I spent my young adulthood scrambling through hoops working all hours to make ends meet. As a parent, your life revolves around your family (as it should). And work keeps chewing at your time, strength, and energy, and the house has a million things that need to be done...

Now my son is grown up, and some kind of retirement light is at the end of the tunnel.

And guess what? Now a bunch of doctors want to tell me how I have to act, what I should eat, and even how I should exersize, and who should be "monitoring" me when I do. They want me to spend my days split between my work, house chores, and sitting in their offices waiting for them to deign to take the time to perform tests on me to see what else they can take away from me.

I have crystal clear coronary arteries, but a cardio at the hospital tells me I have to get on a special, low cholesterol, low fat, low sodium diet As Soon As Possible. Why? "Just to be sure. You don't want your arteries to START getting deposits, do you?" How can you argue with that non-logic?

Then they want to recruit your loved ones to rope you into their "care." Mind you, these are the same people who tell you it's all in your mind as your pericardium fills with fluid and you tell them can't breathe anymore. They have special regimens they want you to perform, and obscenely degrading and sometimes painful tests that they think might be of interest in some arcane way.

I'm sorry, but the fact is that you can get through Med School with a "D." I've met enough of those, that I only hand myself over to unknown physicians when I have no choice.

A friend of mine has Crohn's disease. His wife had some heartburn, and thought maybe she could ask about it while he was visiting the GI specialist. Five years and dozens of tests later, they have found nothing, but they are still looking. She's on three presciptions for ? And they insist she needs to keep coming back.

I went for a free skin screening, even though I protect myself well from the sun. The doctor says, "I found four spots on your back. They're not active or dangerous, and have obviously been there since birth. Maybe we should remove them, though, just to be sure. I can do them one at a time. I'll need to take a 2" circle around each spot, so they're going to leave some rather nasty scars. The back heals very slowly, so it will take several months for each to heal. When do you want to get started?"

What she saw was an opportunity to have a patient showing up at her door every couple of weeks for the next year. Never mind that there was no real requirement (other than, "Just to be sure."), or the pain, or not being able to sleep on my back for a year, or the mutilation, or the endless waits in her office so she can "check the healing" (collect a fee). Or a year of my life when I would lose what little discretional time I would have had.

No, I'm not eager to deliver myself to doctors, even though I recognize that I do need them from time to time.

They have their place in my life. But I get to choose it. And my sentiment about it is this: I've seen many doctors make mistakes and misjudgements. If I am to suffer from a misjudgement, then it should be my own.

"They that can give up essential liberty to obtain a little temporary safety deserve neither liberty nor safety." Benjamin Franklin

 

[tobagotwo]

Fuming

Fuming

Hah! Case in point.

I finally had my first cardiologist visit (4 weeks out). He says it looks good.

Then he points out I have a more pronounced inverted T-wave than before the new valve. Of course, since I couldn't get a copy of that report, I had no clue that I had an inverted T-wave. He says it's probably all right, but I'll get to wear a Holter monitor for a day.

Then he says I had some retrograde flow in the common carotid during the carotid scan before surgery. Again, I had been unable to intercept that report, so I had no idea. He's going to look for an MRI eventually on that one, but thinks it may just be from the AI before the valve was replaced.

What right do they have to Bogart my info?! How do you not tell someone these things when you get the test results? They actually told me the carotid echo came out fine, and showed no problems.

I walked in with expectations that if my rhythm was good, I'd have an echo in a few weeks and be done for a year. Now I'm looking at least at a Holter monitor, an ambulatory BP machine, and an MRI - if everything is OK, that is.

Of course, this is chicken feed compared to what most folks on VR.com go through. These aren't nasty tests. It's just the idea.

This is one of the reasons I don't like or trust doctors. If they know what they're doing, why don't they trust us to have the information as well?

Fuming,

 

[Johnny Stephens]

I have been to da nile

I have been to da nile

When I was much younger, I used to strut around saying "I ALWAYS get things checked out at the doctor." Then, one of those doctors told me I had Hodgkin's Disease. Odds were overwhelming that I would be cured, but the risk of death was not zero. For many years after this, the thought of visiting the doctor would send me on a trip down anxiety road. Surely he/she would tell me I had some deadly malady. Sure enough, many years later, a doctor told me I needed to have 2 of my heart valves replaced. Chances are you'll be OK (I nearly died) but risk of death was not zero (again).

So over the years my fears have been reinforced. I've really gotten much better about it in the last 18 months or so - I went for my most recent followup and didn't fret too much at all.

I can't detect anything that feels particularly "male" about this behavior, all I know is when the anxiety strikes it's out and out fear that has taken over. I can anticipate the inevitable "if there was something wrong, wouldn't you want to know about it?" Rationally, yes; emotionally, no. I've heard it so many times I get upset when someone asks it.

 

[Glenda]

Bob

Bob

I so agree with your opinion of doctor's. I got so upset with my onocolgist today. He is doctoring me for leukemia. I always ask for a copy of all my blood work-up each time because when I ask him questions he always says you are within the normal range. He will never give me the exact figures. He must think I am awful stupid. Since I got CML I have read everything I can get my hands on regarding CML. I belong to a CML website where we bounce off each other. (just like here) I also read everthing I can about this new miracle drug "Gleevec." This medicine is $2,000 a month, if my math is correct that's about $75 a pill. Well, low and behold today he wants me to up my dosage from 400 mg to 800 mg. I couldn't understand why because my all my blood counts and platelets are fine. Well I did and was I ever sick. I have thrown up all day. (sorry more information than you wanted to know) After waiting over 2 1/2 hours to see him I was upset anyway. I asked him what kind of valve he thinks I should get and all he said was "I don't know, I'm not a heart doctor." I just about lost my religion. If I cussed I sure could think of a few words to use.

I venting tonight and I'm sorry but I get so upset with doctor's! ! ! I have a cancer doctor, a heart cardio and surgeon, a GP, and a kidney doctor. And the problem is they don't seem to agree on anything. What's a person to do? ? ?

 

[tobagotwo]

Go with your gut, Glenda.

Actually, considering what you've been doing all day, that's probably not a good turn of the phrase.

Let's try it this way:

God built you a house. Paint it the color you want it to be.

You have spent the effort to learn about the things that test you. One thing you have come to realize is that the more you learn about the questions, the less concrete the answers become. I believe that, if you have all the information, and you've listened to and understood what the professionals recommend, then you should decide what path you will follow. Only you will have the perspective over all of your health issues that can provide clarity to your choice.

In my case, I don't have all the information. In your case, you're not getting the recommendations. That, I guess, is where we fill in as best we can.

 

[Karlynn]

Glenda,
I feel your pain! Gosh I hate doctors, simply because I had to go to so many over the years and some did a pretty good job of trying to kill me. I love both my PCP and my cardio now, but when they chastize me for going past my check-up time I tell them it's because I hate doctors.

You vent away! We're all here to yell "Amen to that!"

 

[ALCapshaw2]

I venting tonight and I'm sorry but I get so upset with doctor's! ! ! I have a cancer doctor, a heart cardio and surgeon, a GP, and a kidney doctor. And the problem is they don't seem to agree on anything. What's a person to do? ? ?

Sorry you are having such a time of it with your Doctors Glenda. Has your GP talked with your other Docs? It seems to me your GP should orchestrate your overall treatment and come up with a concensus. Otherwise, you will have to do it yourself. Best wishes for a good solution.

'AL'

 

[Nancy]

Hi Glenda-

Joe has multiple doctors as well. A long time ago, I had hoped that one doctor could be the coordinator of this diverse group of professionals. However I have come to realize that calling each doctor for their input and waiting for them to call back with ideas, perhaps when the coordinating doctor was not available is not workable at all. Too many opportunities for things to fall through the cracks, too much time wasted between calls and Joe would have to suffer as a result. The things that I found so difficult were just as difficult for someone else.

And then you have the scenario of one professional questioning another's treatment plan. Not something that would be workable at all.

It used to annoy me to no end. Joe and I did not have the medical knowledge to interpret many of the things that were being done.

Over the years I have discovered that like it or not I am now "IT". Joe can be overwhelmed with everything that goes on, so he really does rely on me to do a lot of it. It isn't a task I enjoy, but it has to be done. I have had to learn as much as I can about his conditions, just like you, so I can keep most of the balls in the air. I am no longer afraid to speak up when I don't understand something or when I feel that something isn't right. If someone gets "huffy", I could care less. I consider huffiness as a defense mechanism. Didn't used to be that way, but am now. We have caught many potential errors, drug interactions, inappropriate treatments, lack of proper responses, incorrect hospital diets, etc., not just from doctors but from other medical professionals as well, including pharmacies.

The patient really, unfortunately, has to be aware of his/her own medical situation, and has to participate in their own care. It is even more important the more complicated the problems are.

I'll give you one example.

Joe had shingles. He has had lingering pain from them. He went to the skin doctor, who told him that he had the very best medication for the pain, and wrote a script. I questioned it because in the back of my mind, I remembered some kind of interaction with one of Joe's other meds. The doctor didn't like that one bit. But I told him that before we filled the script, I would doublecheck it with Joe's cardiologist. And he said, "Yes, you do that", or something to that effect. I did call the card and they said they would get right on it. They didn't. So I called another one of his doctors who was not available and I left a message. He never called back until about a week later. So I went online to a site that has drug interactions and looked it up. There it was in black and white and it was serious. I told Joe that he should not fill the script. About a week and a half later the card's NP called back with the information that this med could cause arrhythmias, and it would not be good for Joe, something I hadn't read about. So it was a good thing that he didn't fill the script. A couple of days later the other doc that I called, returned the call and told me that he saw no problem with the script. I thanked him, and told him that we wouldn't be using it anyway. So lots of different opinions. We took the safest route between the rock and the hard place.

So I guess, it's your turn to be "IT". I understand the situation. Kind of like driving the Indianapolis 500 with all the other cars going the wrong way.

 

[Glenda]

Thanks again everyone for all the good information. I really don't think doctor's intend to be the way they are. They are all so busy, over booked, ect. but this is my life we are talking about. I do have a new heart surgeon and so far him and his office are wonderful! I met him for the first time when he came in to see me while I was still on the table from the angiogram, and then right before I was set to go home. He had already been in surgery for over five hours. Two of his nurse's assistants also dropped by the see me. Then on top of that, one of the assistants has called me every day to see how I am doing. I'm real impressed with this. The doctor even gave me his private cell phone number. How many doctor's do that? At the time I am really only having problem with the one oncologist. He rotates every three weeks with his partner, thank goodness. I like the partner so much better. He will sit down with me and go over the reports. I like my GP really well but I don't see him but every three months.

 

[Marge]

I have a husband who has always been very very good about getting check-ups and about seeking medical care when he needs to. He's gone through some fairly rough periods, medically speaking, over the years: a partial knee replacement, carpal tunnel surgery, hand surgery for Dupuytrens' contraction, a very painful episode with kidney stones (eventually had surgery for that) and finally, a couple years or so ago, prostate cancer. In June he's having a full knee replacement (the old partial has been deteriorating for some time). Through all this he remains upbeat and stoical. The guy is amazing.

Perhaps I am very naive -- but I tend to like and trust doctors. I have had three major medical crises in my life, all involving serious surgery. One set of two surgeries when I was a kid (five and six years old); another in my 30's when my left arm had to be amputated due to thrombotic complications from an arterio-venous fistula; and the latest, my valve surgery in February of this year. In all these cases I think I received model (life saving) medical care from compassionate and skilled physicians and other medical personnel. I am very grateful to all of them.

 

[Abbanabba]

In defense of the guys.... some of us girls are pretty stupid when it comes to not seeking medical advice too!!

I'm a classic for not getting things checked out. I always figure I'll be right after a good nights sleep (..which is pretty ridiculous coming from someone who's suffered from chronic insomnia for 30-odd years!!..), or that it's because I haven't had a good nights sleep.

Some of my more stupid moments:

4-5 days spent sleeping sitting in a chair because I couldn't breathe lying down (..which I now suspect was pericarditis..). Not only once, but TWICE!! (..the last time was Jan, this year..).

Dislocating my knee night-clubbing on the weekend and not seeing a doctor until the Monday (..or whenever I could get the appt..), which I have done on three separate occasions!!

Refusing to go to the doctor after a severe migrane and losing my vision. My aunt had to literally drag me to the doctor's office.

Refusing to go to the doctor with a severe cough, which turned out to be acute bronchitis.

Putting off a smear test for WAAAAAAAAY longer than I should have. It was an ad that pointed out that "YES - you CAN die of embarrassment" that finally made me give myself a stern talking to, to get that one done.

Refusing to have blood-work done for my sugar levels... until I almost went into a hypoglycemic coma!!

Avoiding cardio check-ups for 15-odd years.

Putting off the RHC last year because it wasn't 100% necessary at the time... although in hindsight, I wish I had done it because now I suspect I may have PH, I can't get them to do it!!

....and that's just off the top of my head!!

Since joining this forum, I have become far more aware of my health and am now making a concerted effort to be MUCH more pro-active.... and the doctors wonder why I get so damn antsy at them when they imply I'm being a hysterical, hypochondriac!!! HARDLY!!!

...or maybe it's an Australian thing??

Cheers
Anna : )

 

[Rain]

A new twist on that 'man' thing...

A new twist on that 'man' thing...

My husband is a little different....... It?s like he somehow thinks that if we find out we have something wrong with us.... he thinks we?ll start feeling sorry for our selves... or use it as a crutch... or something. I have no idea where this line of thinking comes from. He got it somewhere before he and I created our little family. We?ve never been ?whiners? and VERY seldom sick. (including him) Weird... just really weird.

However, I take a little responsibility myself. I?ve never been one to spend a lot of time worrying about what?s wrong with me. Kinda like Anna... always figured it?d be better in a few days. Just do what you have to do... and you'll probably feel better tomorrow. I know we pass these traits down to our children... without even meaning to. Eric graduated from college after only missing 3 ½ days school in his ENTIRE life! Ryan?s only missed 5. Three sport athletes all their lives and NEVER missed a practice. I?m proud of them... but there are times I begged them to stay home....and they wouldn?t do it. Sometimes I look back on it and think I should have put my foot down a little harder.

I seriously doubt if either one of them ever misses a days work ... but I do think they?ll take care of their health. I've talked to them both about it.. a lot. And I have always taken them to a doctor without hesitation when I thought they needed it.

 

[Mary]

Joe's shingles

Joe's shingles

Hi, Nancy.
I see where Joe has suffered from shingles. I have an outbreak twice a year. I haven't mentioned it to my cardiologist, but now I wonder if I should. I can't remember the medicine the GP prescribed the last two times to shorten the duration, and I never thought to check for side effects with my heart.
Unfortunately, I will have an episode whenever I get really worried or stressed. It's as regular as rain. I keep thinking I will be in a huge mess when surgery comes, because I think I will be both worried and stressed!
Any ideas?
Mary

 

[Harpoon]

While I was in Cleveland recovering from my vr I learned about a book called "Walk on Water" by Michael Ruhlman that's about the pediatric heart surgery team at Cleveland Clinic, the same folks who saved my life. When I got home, my mom gave me a copy of the book to read.

Towards the end, Ruhlman discusses the problems with where to go for surgery (or any other medical treatment) and the disparity in the quality of care, experience, and ability around the world. There really are only a handful of surgeons worldwide that have the kind of outcomes as Dr. Mee at CCF. The rest, while they may be good for more common conditions, can't really handle "difficult" cases. Hospital facilities are the same way. Ruhlman's point is that there really isn't any standard for that kind of care, no bar that every hospital and surgeon needs to reach in order to say they can operate a critical care pediatric heart center (there ARE some standards set by UNOS and such for hospitals that want to do transplants and those standards are evaluated with a certification process.) A lot of places say they're top notch, but they skew their statistics in a way to reflect that claim. If you actually look at the number and condition of patients going in versus coming out, there's a different story to be told.

This holds true really for any form of heart surgery (or any other type of medical care.)

It's a big business for hospitals. Lots of money involved and it's a strong source of income which usually stays in the black. Other areas, like cancer treatment or ER facilities are usually money pits for hospitals according to Ruhlman's findings.


The only statistic that's reported and recorded are mortaility rates for surgeons and hospitals. Dr. Mee's numbers are less than one percent or whatever, the top of the top. A surgeon with a 10% mortality is still considered quite good. It's relative to patients treated of course. The numbers can be skewed by reporting the mortalities on other aspects of a patent's care. Patient "A" had open heart surgery to replace an aortic valve and 4 days later he died of an acute bout of pneumonia, a complication of the assisted breathing during and after surgery. His death (the mortality record) is marked on pulminologist's tally sheet, the patient died of pneumonia. In the reporting of death statistics, there's no meniton that that pneumonia was most likely a direct result of the patient having open heart surgery. So the heart center that treated the patient doesn't have to report to anyone that the patient died under THEIR care, he died of pneumonia, not because the surgery was unsuccessful.


That's the problem with the statistics, they're not thorough enough to give a real picture of patient outcomes and a given center's success rate.


There are more "bad" doctors than good ones. There are more good doctors than great ones. In many ways, it's the luck of the draw. If you have the time and the patience and the good fortune to be in an area where you can pick and choose and find the best doctor for your treatment, you're lucky. Everyone else has to deal with whatever they have available to them and sometimes that might not be much more than an ER doctor who has little or no experience in treating a patient with a heart condition beyond an MI or hypertension.

I dread the possibility that I might have to go to the local hospital for a heart related emergency. My only hope is that my family is able to act fast enough to get me flown from there to either one of the hospitals my cardiologist practices in or Cleveland Clinic. I absolutely do not ever want to be treated for any heart related issue at the local hospital here. Been there, done that, and they don't know JACK SQUAT. They don't even know what my pediatric heart condition is, I have to explain "transposition" to them every time they listen to my heart and hear a "murmor." God help me if they call the clicking a murmor now!!!!

I wouldn't be suprised if they did!!!!


My family knows how inept the local hospital is in treating me. They know to get me some place else that can handle me. I have my cardiologist's home number if neccesary, it's programmed into my cellphone along with all the other numbers he can be reached at. Same with numbers for Cleveland Clinic, including Dr. Mee's secretary. Hopefully, they'll never get used.

Beyond that, there's not much I can do.


Although, I do know the President and CEO of the local hospital, maybe I can lean on him some to recruit a good staff cardiologist....



Getting back to the original question, I can see how a lot of guys build up this "I'm invincible" complex and have a hard time overcoming it when faced with reality. I know a lot of guys don't like to ask for directions or consult the instruction booklet when trying to put something together or fix it. Just seems like, if you KNOW something's not right, you should be "MAN enough" to do what it takes to deal with it, even if that does mean facing some really scary stuff.

Men go to war for their country or fight to defend their families almost without a second thought, why can't they fight for themselves? What's different?

That's more or less rhetorical at this point. =)