Anger and sadness

[Nancy]

I mentioned this on another thread, and Ben thought it would make a good topic for a thread, so here it is.

Granted, I am the spouse of a valver and have not experienced things first hand, I still have many feeling related to Joe's very compromised health.

Here is a man who played semi-pro baseball, minor league pro football, and loved track and basketball where he was constantly on the move. So he was athletic and active and had a very responsible profession.

There have been times in his long and dramatic struggle with the after-effects of having had rheumatic fever as a teenager, that he cannot even pull up his shorts because he is so out of breath. He can't run anymore, he can't walk the dog, and there are days that he can hardly get around the house.

His health gets better and then gets worse, so he is never in a stable state of being.

He is in the hospital much of the time, and sometimes, he has three or more medical appts. in a week.

Do we feel sadness, you bet! Do we feel anger at the stupid disease that robbed him of his health, you bet!

He has wonderful and caring doctors without whom he wouldn't be here, but all the king's horses and all the king's men can't put Humpty back together again. And he'll never get back to good health.

So, I am sure others have similar feelings about their problems, even though they are not as dramatic as Joe's (although some of you may be).

I don't remember a thread expressing how everyone actually FEELS about what is going on with them.

So blast away.

[tantekay]

Hi! I'm a mom of a very vivacoius 2 1/2 year old with a fairly complex CHD. He's had to OHS (4 weeks and 5 mos) and he's due for a 3rd this summer. I think it's wonderful that you bring up the fact that sometimes you just feel angry about what's going on. So many people get bogged down in the diagnosis and treatment that they don't take time to truly "feel" anything about what they are going through. I remember when we got the diagnosis at 1 week old feeling very overwhelmed, upset, angry and most of all guilty that I somehow caused this to happen to my baby. Faith had played a big part of our journey, but there are days I still wake up and think that this is not fair that my son has to have surgery again!! But I do my best to give hime the most "normal" childhood I can which includes starting preschool in the fall -- I'm still not too sure of this but his cardiologist is very happy about it so I guess it's ok -- plus if he had not had the heart defect he would be going to preshcool anyway. Through all this I just know that I love him and tell him everyday he's perfect and I wouldn't trade him for anything.

My dad (under the recommedation of a counselor he was seeing for depression) recommended a book called When bad things happen to good people by Harold Kushner -- it's a fairly short read but kind of weighty as it deals a lot with faith and understanding that bad things just happen. It's helped me alot and addressed a lot of my feelings -- maybe it could hekp someone else.

My best to you and Joe -- you will be in my prayers. take care

[Ross]

Mine all started when I was 31 with my first bout of pneumonia. I had no idea that by the time I'd reach 33, I would be in medical intensive care 6 different times with pneumonia again. This lead to the open lung biopsy and diagnosis of Pulmonary Hemosiderosis. With each round, less and less of my lungs were functioning.

Next in line came the unannounced Aortic Dissection.
The hell I went through then, the stroke, the DVT, Pneumonia again, having to learn to walk and talk right again and so forth, the things we take for granted everyday that others could do and I could not. When it was all said and done, I was just happy to be alive. I didn't care to much about anything else.

Next in line came the Hip replacement from all of the High Dose Prednisone destroying my left femoral head. There went my ability to run after my kids, not to mention being out of breath trying too. Climbing stairs takes a certain special walk since the joint doesn't move like the real deal.

Next up came the aortic valve replacement
I was so hoping that the breathlessness would be relieved with the addition of a functioning valve. Well that didn't happen either. Another trip to hell, collapsed lung, Staph infection from an IV line, more lung troubles, having to learn to walk again after my 50 days on my back and coming out of the hospital on oxygen and never getting off of it again.

Now this new thing with the chronic CHF and poor kidney output.....

Yes I'm angry. I feel that I'm a burden to my loved ones, that I'm the cause of our economic problems and the reason we've never been able to get off of the ground economically. Between my lungs and Heart Surgeries, we never have known what it was like to have money saved. Living in constant fear with each passing day that today may be the last for us economically and then lose everything. I feel my kids were short changed in their upbringing, since I couldn't play ball, chase them, or other things that other dads do with their sons.

This last year has brought about a lot of reflection. I'm so limited in what I can do now, that I can't even work on my own car anymore, normal everyday things like taking a bath are an extreme chore, well I can go on and on. Never in my worst nighmares did I think I'd be in such a predicament at this early age. Angry, you betcha I am.

[PamO]

Nancy, thank you! As another wife of a valver, it is frustrating and I get angry sometimes at the injustice and unfairness of it all. I look at my husband, who is doing well, but can no longer do things he someday may want to do (he wants to climb Longs Peak this summer - it's freaking me out).

But, when I get angry at how I perceive it as unfair, I then remember that, without his surgery and the lifetime of Coumadin, I would not have him at all. Without medical science, I would be a 41 year old widow. That knocks me back into being sane.

And, Nancy, thank you again for being such a supportive person on this site. When I came on board here, searching frantically for information in the four days we had until Mike's surgery, you were such a calm voice of reason with your advice. Your tips for the hospital were invaluable and the suggestions for the first few weeks home kept me from going bonkers with his weirdness from the drugs and anesthesia. You are a gem.

[Birky]

You all have gone through so much and I imagine it is hard to stay focused on just everyday things. My Mom always says that God gives you no more than you can handle, but at times I find this hard to believe. It seems like it never ends. We never get ahead with medical bills even with insurance. My problems are so little compared to others so I am not going to complaine.
God bless you all,

[Phyllis]

I feel my kids were short changed in their upbringing, since I couldn't play ball, chase them, or other things that other dads do with their sons.

If you asked your kids Ross, I think they would tell you that they learned many more important things than how to play ball from you. Your shining example of integrity, compassion and a willingness to help others is worth a thousand games of catch! They will be all the stronger for it.

[Emma]

Great thread Nancy!

So... how do I feel about Chloe's condition?

Thats hard to answer I think cos I feel different things at different times.
For the most part I just feel grateful and SO happy thats shes here with us.

She's been through so much and is totally my hero!
She's had 3 open hearts, a cath, suspected menengitis so had a lumbar puncture for that, collapsed lungs, numerous medications, countless blood tests, RSV twice, paralysed vocal chords... the list goes on, but still she's a chatty, happy, bright and outgoing little girl. How could I fail to be proud of her and feel anything but happiness when she's around.

The biggest feeling when she was first diagnosed was 'guilt'. Was this my fault? What did I do to cause her to have these problems? I have since come to terms with the fact it's just one of those things, yet I do feel slightly down sometimes (wouldn't say angry any more) have very occasional tears and bouts of 'Why her?' 'What will her adulthood be like?' 'Why did it have to be Chloe that had the poorly heart when we see all our family and friends have worries about their children that only revolve around colds or a tummy bug?'. Not that I would ever wish the CHD world on anyone else, but God knows I have wished Chloe didnt have to deal with it sometimes.

But I would never change her and if CHD is part of what made her the gorgeous, intelligent little girl she is, then so be it and I would never want to change a thing.
Having a heart child has completely changed me as a person, I'm well aware of that. I think I have a greater ability to empathise with people with problems in their own lives, I no longer worry about small things in life, I don't get stressed at work over trivial matters, I know what is important - and thats all thanks to Chloe and what she's taught our family about life.

Emma
xxx

[rbl1999]

Oh, my, this is a real tear jerker!!!!We sure all have been thru a lot.
OK, folks... Mine started with losing my mom at age 51 (I was 21) of a heart attack (probably aorta valve disease) My husband was diagnosed with renal failure that same year at age 27. He had a kidney transplant a year later and spent 4 months in the hospital with 12 visits to the OR!!! We had 3 small children. Things went along pretty good, til 1998 when he was diagnosed with prostate cancer and that was a nightmare with 7 admits to the hospital. He, like Ross, has taken immunosuppressants for so long (33 years) that he is a mess!!! His shoulders are so bad that he is not even eligible for shoulder replacements.. And then it was my turn!!!!! Diagnosed with Bicuspid Aorta Valve Disease in 2005, told it would be about 5 years and ended up having AVR 7/2006. But the beat goes on!!! We feel fortuante that he has had his kidney for 33 years and that I am doing well 7 months post op.. My dog (maltese) is diabetic, blind and has an immune disorder. My children say that we can't even have a healthy dog!!!! But, here we are, all posting away and getting lots of support from each other... Hugs to everyone!!! Rose

[Tom F.]

I have nothing to compare with what some of you have suffered, just a wee bit of arthritis and a valve sparring aorta replacement surgery. But the phrase that I used to turn to again and again as a young Lieutenant of Marines when I believed it was quitting time was: "God doesn't send you any more pain than you can handle". And that is usually the truth when you think about it. As bad as it gets, you get through it. And that is not intended for one second to minimize what Ross and all the others have suffered. Rather, its in recognition of the strength you all have shown in facing it all.

And by the way, bitching about it along the way is fully authorized !

[sue943]

I don't feel anger nor sadness, just resignation. More a case of what else can go wrong with my life?

Where do we start? My daughter became hearing impaired at the age of three. That really hit me hard, if only I could have changed places with her. Then I developed type II diabetes six years ago. My son was diagnosed as being bipolar. My daughter almost lost her sight, she had severely detached retinas in both eyes at the same time, her sight is slightly impaired but not too bad, had she lost her sight she would then have been isolated as she lip reads. Next were the kidney stones, their treatment caused endocarditis, which caused the stroke the day before my mother died - so I missed her funeral. Then my heart developed a murmer, both mitral and aortic valves. My renal function is impaired due to the antibiotics for the endocarditis. Had the double valve replacements. Then a few days after being discharged I developed complete heart block, the day before my daughter's wedding - so I missed that. Then I lost my job. My daughter then had an abnormal PAP smear and her husband failed an importnat examination. Now my thyroid function isn't what it should be, possibly an effect of the amiodarone.

No, no anger, not even 'Why me?' - more a case of why not me? There are plenty of people worse off than me.

[Karlynn]

I was angry early on, but more than that I felt terribly inadequate as a mother and wife. Since my valve problems started with my 2nd full term pregnancy, my children were very little when Mommy wasn't feeling good. They had to make a few trips to the ER - because of Mommy. One time they decided to keep me over night and as my husband was taking our baby daughter and toddler son home, my son turned and ran back to me and sadly said "Mommy I want you to come. Why can't you come too." Makes me tear-up to think of it 20 years later. They had to put up a lot with Mommy not going to church with them, or to see Grandma and Grandpa, or other fun things. I had no energy and constant arrhythmia.

But all of this has made me so grateful for so much. It's the little, bitty things in life that bring me joy. I drove into my driveway this morning saw a lovely splash of red, in dead-looking branches of one of our trees. There sat one of the 2 male cardinals that live in our yard (with their mates). I got out and he decided I needed a song. So I just stood there, looked and listened. Made my day.

[Praline]

I do not have any real reason to feel angry or sad on my behalf. True , I just went through open heart surgery with pretty serious complications but I feel lucky to have made it through. Besides some AFib/flutter and high blood pressure to frustrate me, I am fine.

BUT I went through all the emotions that you all are describing last year when my brother died at 61.
First I felt sad that he was gone. I am still sad.I miss him so much!!
I also felt grateful to have been able to give him 22 years of freedom from the dialysis machine.. When he went on dialysis, I was able to donate one of my kidneys. Even if I was only a half match ( on a scale of 1-10, a 5), that kidney kept going all that time.
The last 10 years of his life, I felt frustrated, From taking all the anti rejection meds, his bones were gone. He broke one leg twice, the other leg once.He had knee replacements on both knees. His hands were always sore. I so wished there was something I could do.
BUT when he died I was very ANGRY.You see, when he had the kidney transplant they left his own kidneys in. They were just not working..too big a surgery to remove them I guess. From what I know, it is a quite common practice. He developed renal cell carcinoma in one of his own kidneys. He complained for months about pain in his back but...they were so busy worrying about the transplanted kidney that they forgot he had 2 other kidneys. By the time they realized what was going on and diagnosed the renal cell carcinoma, it had already spread. He died last year from malignant tumors in his brain and lungs. We were all asking ourselves why they had missed checking his own kidneys when he was complaining of pain..... I still fell angry thinking about it.

It makes me wonder about all the screening tests that doctors want to do and that insurances will cover. And others that they do not recommend. There is no colon cancer in my family so why do a colonoscopy? I lost a brother to kidney cancer and I have 2 other brothers who have kidney problems. So wouldn't it make more sense to do some kind of kidney scan instead of the colonoscopy? Heart disease is one of the main killers of women. Why not do some heart tests as part of annual checkups?

[Granbonny]

First..to Tantekay..What a beautiful little boy:) :) :) I, too, have an age 2 1/2 year old Grandaughter..Adopted from Russia..Home 1 year March 15th...:) ..she has no problems, but, yet, I worry when mom called today and said she had diarrhea...( We think from cutting teeth)....Your post made me feel..How lucky we are..:) ....Next...Yes, I was age 61 when I was told that I had to have surgery in 3 days for an Aneurysm...(No symptoms).. Husband and I were retired and traveling in our new motorhome......That was put on hold....for 6 months. The worse..was having to tell my age 9 year old Grandson .that Grandbonny could not do things with him..like we had done in past years...That is when I was angry...Hard to explain to an age 9 year old.Why, I could not come and watch him play ball, ect...After a few months..I was able to go back and do things with him:) ....Adult children understand..but hard to explain to young children.:( ..I am so blessed, now at 4 years ( March 25th)that I can do all the things with my Grandchildren...:) ..No anger now. I guess that is why I have stayed on VR.Com so long..Just letting people know, there is life after OHS.:) Bonnie

[Ann L]

In reading this thread, I can only try to swollow this huge lump in my throat and quietly bow my head and says thanks for your examples of strength & integrity. I watched my then 57 yr old mom deal with 4 heart-related surgeries (diseased arteries) for years when during an angiogram, she had a heart attack and didn't make it. It had only been 30 days earlier that my dad had to unexpectedly have OHS (angina, subsequent bypasses). This was 25 years ago.

My mom was the last of 10 children, all of whom had heart/artery disease and I grew up watching how this effected not only my siblings but also my cousins. We all felt blessed for the time we had. Also, let me tell you that there were tears, many prayers, and lots of childhood stalking of my mom when she'd come back from the hospital :o .... and I wouldn't trade away one millisecond ... especially for the things she had taught me about living. She will always be my bestest, closest friend that I look forward to seeing again someday.

It's seems like ages ago that I lost my mom and had to find the strength to help my dad fight for his own survival along with his grief. And I think I have loosened my grip on that strength with my own accelerating symptoms and gradual decline in stamina ... so from the bottom of my heart, thank you for sharing your stories here. I don't know yet where my valve disease is going to take me but I know one thing for sure... you can bet I've been reminded of some of the reasons and whys... bless you.

[aussigal]

Its stuff like you have all written above that keeps me coming back here...

And it keeps me grateful...

there are so many others LOTS worse-off than me I find it hard to feel worthy of a whinge ...

whenever I have depressed moments (ask my hubby he'll tell you how ridiculously sad I get! :rolleyes: )
I remember how lucky I am to be alive,
to have 3 wonderful sons,
to have a hubby who does care even tho I think he hates me sometimes ,
to know about my disease so I can get it fixed before it takes me,
to have found VR.com,
to have so many blessings I could go on for ages but I wont...
you get the idea :D ...

I have found a positive attitude and to surround yourself with loved ones is the best medicine...

I try to remember always to be grateful for small things...

everyones story has touched me , I had to go get the tissues out...you are all such beautiful people...I love you all

[cocoalab]

Wow I have been so touched by each of your stories. I know I don't post alot but I read all the time and it is nice to know you and to learn from your experiences.

I don't think I feel angry too often, sometimes a little sad that so many hard and sad things happen. We have had a few hardships with Andrew and now Joel and financial dificulties, but when I look back and see how God has taken care of us through it all I am encouraged. That doesn't mean nothing sad will ever happen or that the hard things weren't hard just that we got through them and I never was left alone and never will be.

Today I am a little sad. Maybe it is the medicine maybe it is the still waiting to hear from doctor blues.:rolleyes: But it will get better. My heart at least isn't giving me palpitations so I am greatful for that!

I don't know if I want to know the future I think it works better to take it one day at a time. Sure would like some answers to my nagging questions though. Ah well...eventually.:)

[imhayley]

Well first off...HUGS to all!!! I believe what doesn't kill ya gives you post tramatic stress disorder. This has been the case for me.:eek:
I knew something was wrong with my heart some 5 or so years ago. I was just told by my pcp that I had a mvp w/ mild regurg. I was told everyone has this and get on with life. I continued to think I was just getting old when I would be tired most the time and had no real social life as sleeping was my hobby. My heart would pound and skip and jump and off to the E.R. I would go. Anxiety attacks...that's what they said EVERY SINGLE (F WORD) TIME.
I decide I want to go to beauty school to be a nail tech and make lots of money:D I start school and then in class one day I feel like I'm having a heart attack. Once again It was written off as stress. I finally went to see the Cardio and since I had no insurance I was told to get some due to the expensive tests that would need to be perfomed. I wore a heart monitor for one week and returned to the cardio. I told him I can't get insurance but was still trying. He told me I had sinus tachacardia and I would be just fine. I questioned him as to why he told me we would do all these test and he got angry about me questioning him and FIRED me as his patient. No referal NOTHING!!! Went to a new cardio which by the way I had to wait 6 more weeks for because they are so busy. I met with the new Cardio and one month later had OHS w/ maze procedure. During the time I was in the hospital (the only time I've ever been admitted overnight and first time I've ever stayed there except visits to the ER.) my little Maltese tinkerbell had to be put down as her back went out. MY poor husband had to come and tell me this while I'm just coming back to life. That alone was devestating especially on all the morphine. I was wrecked. My father decides to start trouble in the hospital since he Isn't in control of things and that was a mess. Come home to no tinkerbell just to go back for another week with an INR of 11.9 . I have never been so scared and felt so alone in my whole life. I still can't belive this happened to ME. WHy WHY??????I can't have any children now and I'm just crushed over that one. My family ....my ENTIRE family lives here in the SAME city as me and they are so self centered that not ONE of them cared for me when I came home either time from the hospital. Just a phone call a couple times a month. I have PTSD Im depressed most the time. I cry when I see a freaking commercial and I pole vault over mouse turds. I continue to spit blood...been to all the docs with no real answer and had to just accept that one. I had built my business up for my first year and then BAM! out of work for 2 months....still trying to get my business going again...slowly but surely. Then the yorkie we got to cheer me up ...her name is Kia Ora...she has liver disease and now has seizures and is on borrowed time. I would have said say la vi but I want to get into heaven and am even bitter about that deal. Okay enough from me. but I think feelings are a good thing because I use to drink and drug them away when I was in my 20's run from them in my early thirties and now at 39 it's all hitting me at one time. THis year I turn 40 oh that makes me cry just thinking about it. Thanks I truly truly needed this.....I have gotten MORE support from you people here and you really did help me basically stay alive and want to fight the fight and I'm so blessed to have you all to communicate these feelings to. WOW It's so warming to me ...you will never know the gratitude I feel.

[Christina L]

used to joke about the saying "Life's a bitch and then you die." Those were the days when life was a BEACH.

Since then Mom has died of breast cancer, her brother died the next year of esophageal cancer, and in between their 95-year-old mother died of a broken heart.

Two years after Mom died, I found out I needed mitral valve surgery.

I really haven't had time yet to be angry. Sadness is the emotion I have felt for the last five years. Also shock.

Life changes SO fast - on a dime.

I am trying to regain my equilibrium and to see the good in life but right now it is very hard. I miss "yesterday" when our family was all together and the only thing I had to worry about was getting a date on Saturday night, not endless doctors' appointments and the fear about what tomorrow will bring.

Since my MV repair, I have had ups and downs - right now trying to find out why I am desaturating at night and having to wear oxygen.

After reading many of the stories here, I realize it is all relative - there are some who are worse off and some who are better off.

Karlynn, I loved your story of the cardinals.

Life truly is a #$%$ at times but my faith and hope is that something far, far, far better awaits us in the next life (I know it does) where we will be with our family again and our old frail human bodies will be discarded.

Christina L

[knightfan2691]

*pauses*

I wonder if this thread will take over as the #1 thread in terms of posts/views ... eclipsing the sex thread ;).

*takes a deep breath*

I don't even know where to begin. I'm mad, but not really. I'm sad, but not really. I'm frustrated, uneasy, detached, unable to focus/concentrate, unnerved.

Yet, at the same time, I'm energized, excited, thrilled, happy.

I have a knot in my stomach ... along with abdominal pains that just won't go away.

I have things I want to do ... that take a back seat to things I have to do. I know what all I need to do to get things scheduled, but I don't know where to begin to get things scheduled "for the best". Yet, ultimately, I'm not "in charge" of how things will be.

*sighs*

So much to do, so little time. And my health takes away from the money and time to do some of the things I want to do ... which really aggravates me.

I was off work again today because I couldn't go in because of the abdominal pains. I slept for several hours this morning ... yet, this afternoon and even somewhat this evening, I'm exhausted. Partly because just thinking of things I have to and want to do ... and working out the details of accomplishing all of 'em ... is frustratingly tiring.

As I noted in another thread, sometimes I wish things were easier/fairer so I could enjoy life more. Yet, I know it is my responsibility ... my choice ... to enjoy the life that I have. And, I do. But, I need a new job ... to the point of being in desperation.

Arg. I better stop there.

Irony rocks.



Cort, "Mr MC" / "Mr Road Trip", 32swm/pig valve/pacemaker
MC:family.IL.guide.future = http://www.chevyasylum.com/cort/
chdQB = http://www.chevyasylum.com/cort/quilt.html
"Who's gonna hold me tonight?" ... Trace Adkins ... 'Help Me Understand'

[Ben Smith]

Wow, After my bitching in a different thread, some of what I read on this thread makes me feel as if I am a whiner !!!

Although, each of us has different reactions to the difficulties handed to us. I, myself have found that most often I am a very happy individual. It's just those times when I do ask the " why me" questions.
I was one of those guys that had it all 6 years ago. I was in great shape and had a great career going. It is scary what it takes to bring you back to earth. I, personally was on a high of physical fitness and strict diet, the picture of health.
Yes, I had been aware of my congenital valvular disease, just didn't believe it. It was hard for me to admit that I, could be stopped at all. Much less by a bad heart valve that I had been told about for years.

When I was young, I was told that I would never be very big.....nor would I be able to anything very physical. Let me tell ya, I am 6' 6" tall and have always been physical in everything I do........why were the docs so wrong ?????

I ignored what I knew as a child and just lived my life until I was challenged (by a very dear friend I must add) to go to the cardio and prove nothing was wrong with me......... well we know how that turned out. Not only did they show me my valve was shot....they showed me I had a large aneurysm in my ascending aorta.

This made me so angry, I was not sure how to handle it. I was taking care of my self. Diet, exercise... you name it. I was in great shape. Why would this happen to someone who actually cared about their health?? There are many folks who just eat and live any way that works easiest for them........ why me??

My anger about this continues ongoing. I know how selfish this sounds, that is what this thread is about. Getting it off our chest.

I am mostly a very happy person, glad to still be here with my family. Yet, there are those days that I am very angry about the whole idea of having to deal with this surgery and the ongoing emotional issues that come with it.

Let me end my "whining" session by thanking those valvers that came before me that granted the medical advances that have occured and given me a very normal life, post AVR.

I ahve more to say, however, none of this reads as I feel it !! I am not sure how to put my feelings into words.

Thank you for listening,

Ben

[Karlynn]

Cort, I hope you are right. I hope this ends up being the most viewed, most responded to thread. Then we'll have Ross put it in the Resources forum. And we'll refer to it when we get into our little bickering threads about valves and coumadin and reops.

While each of us have a different story, these different stories are the common bond we share. We are survivors and we are conquerors, and we are victors and we are winners. And to the winner goes the spoils. The spoils are the knowledge that we choose to live, no matter what we must go through in order to do it. The sun is brighter and the night skies are more stunning. The laugh of a friend and the hug of a family member hold more meaning. A silly joke or story are a reason to rejoyce. I could go on, but I know you all know what I'm talking about. And that is the other thread binds us.

[geebee]

Sometimes I feel guilty for whining about my problems when there are others worse off. But I remember talking with my sister who was apologizing for complaining about her problems when I have had 3 OHS. I realized that we each have our own levels of what is tough for us and what we can handle. I decided then that I would allow myself the feelings that come when they come.

I have been really angry and really sad. Mostly it was about missing out on having children. I really feel I would have been a good mother (and, of course, my children would have been the most gorgeous and intelligent ever).;) ;) :D I've had some bouts with illness that had nothing to do with my heart and actually wrote good days on the calendar because they were so few and far between. Now that the good days outnumber the bad, I just feel grateful for still being around. I feel like I have been on borrowed time for 25 years and I hope no one calls in the mortgage.;) ;) ;)

Anyway, I miss my parents and I miss the children I never had. But I thank God every day for the people still in my life and the people who will come into my life in the future. I hope to be around for a long, long time and truly hope I leave some mark to show I was here.

God bless all of you for being in my life.

[gadgetman]

WOW!!!!!!

Ain't we a bunch of great folks or what!!!!!!

Like a lot of you, I came to ValveReplacement.com crying, cussing, screaming, and fighting WHY ME, WHY ME???????? After reading the stories and experiences of others here, I quickly found out:

1. I didn't have to be alone in this.

2. I wasn't as bad off as some other folks.

3. There was something to look forward to on the other side of the Mountain!

4. Somebody would be here 24/7 to answer, question, rant, listen, slap, kick (Mary????), pick up, bring down, pray, help and just provide a cyber shoulder when it was needed.

5. I could actually give just about as much as I receive, both in the "waiting Room" and "over the Mountain, through the Brook, over the sea, etc.".

Just like a family, we've had some disagreements, happy and sad times, been lied to (remember some of our SPAMMERS), been told the truth (even when WE didn't want to hear it), asked someone to pass the potatos, thrown potatos (and other things) across the table, and overall just enjoyed each other's company.

They always say things can be a "blessing in disguise". As far as VR.COM and our family it is very, very true. We share a common bond (or "thread that binds us together" as Karlynn said). None of us asked to be here (ARE YOU CRAZY!!!!). But God, fate or luck (pick one or all) led us here so we could share in our fear, pain, agony, anger, grief, happiness and joy. In our own way, we each provide support to the others here.

I will be eternally grateful for this site, the founders that got it going and keep it going, current and future members of our family, and hope and pray that one day we are still around to listen to folks say "What is this Open Heart Surgery they talked about?".

Thanks to one and all and,

May God Bless,

Danny

[Debbrn]

Growing up I wanted the "American Dream", a husband, 2.4 children and a house. And I almost forgot: Good health was just assumed.

Reality: I was born with a complex heart defect, I have no children, and I am a widow. Yes, I have a new house, but it is not my dream home yet.

Have I been angry, scared and depressed? YOU BET!!

I'm I a survivor? YOU BET I AM!!!!

Karlynn-You are so right. We are winners and to the winners go the spoils.

Growing up with a heart defect was very difficult. Growing up was very lonely and sad. My mother was unable to convey to me that eventhough life was filled with challenges, things were going to be ok. While I was looking for an earthly peace, God reached down and gave me His heavenly peace.

At the age of 27 while I was in the surgeon's waiting room, I met a wonderful man and married him 10 months later. He was also a patient. Because of both of our heart problems, we cherished every minute we had together. We never went a day without telling each other we loved each other and giving each other a hug. Not many couples have that blessing. We had 2 wonderful years together. Next week will be our wedding anniversary and the anniversary of his death. It will be the 10 years since he died. I have come a very long way through grief including anger and depression.

Now I am learning to deal with my health. Not knowing what kind of future I will have is scary. Getting tired makes me angry. Being tired makes me feel weak and less of a person at times. It tends to isolate me if I am not careful.
The last month or so has been good. I seem to have a little more energy and therefore more confidence. I am very appreciative of the good days. I am learning how to take care of myself physically and mentally.

I will never "get over" my heart problems and the death of my husband, but I will learn to adapt and move on. I think that the challenges that I have faced has allowed me to enjoy and appreciate the blessings that I have received much more.

Debbie

[clouddancer22]

Oh Nancy, thank you so much for this thread! I dumped so much on my first thread, the emotions were running so stron. Ross, I am so sorry I was angry with you, goodness, I will keep you in our prayers. Also, everyone, sorry in advance if I ramble.

Oh, yes, anger, sadness, confusion, guilt . . . My 'lil baby girl is sweet 16 now, with three younger brothers. She is a real trouper. She has Mosiac Turner's Syndrome, short stature, and severe aortic stenosis, a bicuspid valve. I don't even know what else to say about my life, I try to take it all in stride. PPl who know me say I am incredibly strong, but I feel like an incredible loser.

My poor daughter. I am tall, slim, and athletic. My dear daughter wants to be like her mommy. She has been on the swim team for 7 years now, is the head clarinetist at her high school, tried to be on track. Awww, they made her quit. She keeps trying to do sports, and keeps getting denied.

I am sorry, I will try to post again. Too many tears. I had to take out my contacts when I read this thread. I knew this was going to happen.

[OldManEmu]

I am resigned to the fact that I no longer have an OEM heart; this is obviously less than ideal, however I think I am fortunate along with the rest of us despite many having had to endure a very difficult run. Only 50 years ago these valve problems would have been a certain slow painful death sentence for all of us, and for 80% of the world’s population not fortunate enough to live in a western country it still is. Just look at how few members we have from non western countries!! It puts our problems into perspective. :)

[Mb]

Wow....Nancy you have obviously done a service to this Board by starting this thread.

My husband is the heart valve patient. He had rheumatic fever when he was 18-1/2 years old. I met him when he was 19....just going back to work. I was 15 at the time. This past week we celebrated our 37th wedding anniversary.

Neither of us have ever been angry about his health condition. I know neither of us have ever said "why me?". For me, when he first went into heart failure 5 years ago, I did have to slap myself a bit and remind myself that I ALWAYS knew the day would come when he would need heart surgery. It was never a secret that he had heart damage that would need repair one day. So, I pciked myself up, and dealt with it. My husband on the other hand, has a deep and abiding faith in God. He feels he is exactly where God wants him to be, for His reasons, and not for us to understand.

We have both been scared. Confused. Anxious. Not angry.

Many years ago, I read a book by Lee Iaccoco. There was one paragrpha in that book that changed my perspective on life, and I will paraphrase it here:

No one gets through this life without tragedy and problems. Most people will expereicne the death of their parents. There is a 50% chance that your spouse will die before you do. You will loose your job. Your children might disappoint you, and not turn out the way you had hoped. You will get sick, or your spouse will get sick. These things happen to everyone. No one gets through life without these things happening to them. So, when it happens to you, don't say "why me". Get through the problems. Enjoy life. It is worth it.


Remember that he lost his job VERY publicly, his wife died after a long bout with diabetes, I believe. He spoke from experience.

[hensylee]

this is also my story with my brother - ditto, Nancy. Thanks for this.


I mentioned this on another thread, and Ben thought it would make a good topic for a thread, so here it is.

Granted, I am the spouse of a valver and have not experienced things first hand, I still have many feeling related to Joe's very compromised health.

Here is a man who played semi-pro baseball, minor league pro football, and loved track and basketball where he was constantly on the move. So he was athletic and active and had a very responsible profession.

There have been times in his long and dramatic struggle with the after-effects of having had rheumatic fever as a teenager, that he cannot even pull up his shorts because he is so out of breath. He can't run anymore, he can't walk the dog, and there are days that he can hardly get around the house.

His health gets better and then gets worse, so he is never in a stable state of being.

He is in the hospital much of the time, and sometimes, he has three or more medical appts. in a week.

Do we feel sadness, you bet! Do we feel anger at the stupid disease that robbed him of his health, you bet!

He has wonderful and caring doctors without whom he wouldn't be here, but all the king's horses and all the king's men can't put Humpty back together again. And he'll never get back to good health.

So, I am sure others have similar feelings about their problems, even though they are not as dramatic as Joe's (although some of you may be).

I don't remember a thread expressing how everyone actually FEELS about what is going on with them.

So blast away.

[kingpeta]

I read through all these threads. In the beginning, I got all pumped up to talk about my problems and how angry, sad & depressed I am about them. By the time I got to the end, I realized I have nothing to complain about. I was born with a bicuspid valve. Learned about it 20 some years ago and dismissed it as nothing to worry about until I'm 75. Well, that didn't work out so here I am. Yes I went through sugery. I take 7 different meds daily. I get sick of the ticking at times. I worry about the next doctor appointment. I worry about dying unexpectedly and leaving my wife & children. But then I think about you all who have endured far more than I and how you continue to live life. I think about my next door neighbor who has MS and lost her leg last year in a motorcycle accident. Her husband broke man bones in the same accident. Was that fair to them? I think about my brother that died in 1984 due to melanoma. He was 34 and was building computers in his home before "home computer" was a household word. Was that fair? I think about my pastor who had a stroke 5 years ago at a young age. He has recovered well and preaches with more feeling and energy. All these people have been affected by bad things that can happen in life. People say "things happen for a reason". I think life happens for a reason and I need to start figuring out my reason. I have nothing to complain about! I can go to work, sleep well, enjoy activities, love my kids and plan for the future. No one ever said life would be easy. We have such a short time here on earth and there's so much to learn. I will try to count my blessings just as mom said. One of those blessings is this forum and the people here. thank you all for lifting me up a bit today. God Bless.

[Granbonny]

3 years ago, we sat around our community pool with 3 great male friends...doing things that family do..watching our Grandchildren swim, playing scrabble, ect...then, one friend had OHS..(Bypass)..We walked together everyday..To recoup and laugh........6 months later, he had a melanoma and died 6 months later.:( :( Then another friend..thought he had food poison (Lived alone)..they found him dead 3 days later from bleeding to death (throwing up blood)..and now, my Hubby's best friend has moved to Fla. to live out his last months.(Rare cancer)I cry every week when I go next door. checking on house, outside fish, ect. and see where he placed his shoes outside the kitchen door.....And all 3 of these men were younger than me... Just retired and enjoying life with their Grandchildren........Even tho, it was raining today..I drove a 2 hour round trip..just to hug my Grandchildren play and laugh..( for 2 hours).......Bonnie

[geebee]

I am so very bummed out right now as I am reminded, once again, that life can change in an instant. My family is still dealing with my BIL who is fighting the problems left from his cerebral aneurysm (can't write, read or hold utensils) and undergoing extensive PT in the hospital.
Then I got a call a couple of hours ago from the Chief of the Fire Station where I work part-time. The woman I job share with had a serious car accident yesterday. I even remember hearing the call on the dispatch scanner but, of course, I did not know it was her. She is in critical condition with chest injuries and broken bones.
Once again, the message comes to never take life for granted as it changes when we least expect. The world is such a precarious place but one that is oh so very precious. How lucky we all are to be here.

[strawberry]

Yes, Yes, Yes.

Nancy, you guys have been through sooo much. Of course the anger and sadness are going to be there...I find it comes and goes, do you. I think there are a variety of people here...some may have few symptoms, had the surgery, had no complications, and may feel a lot less of the anger and sadness. I think people with chronic problems like your hubby and Ross have a lot more to feel sad and angry about. I haven't had to deal with the valve issue yet, but I have a lot of other stupid things that add up and can wear you down, especially when you're "young" (T - 12 days to the big 4-0). My one condition I had rendered me completely senseless with pain, left me riduculed at work since it took 9 months to get a dx so it was all in my head, and left me unable to do the active things with my then 2 year old. Finally dx with an incurable, hard to even treat pain condition. There were many times death seemed like a welcome friend. I lucked out and one of the medicines that sometimes works worked for me and I have a fairly pain free life. The message board for that disorder though is full of anger, grief, despair, desperation, because many do have to live forever in pain. On the other hand, there are some people who absolutely amaze me with their spirit and optimism despite the every day awful pain....Anyway, my point is yes I've felt it but not with the valves. My biggest feeling when I was in the throes was jealous. I'd see moms with their kids, heck I'd see anyone walking along at a normal pace and I would feel robbed. The gift of the whole situation is I never ever ever take being pain free for granted. Everytime I do something with my daughter that I couldn't do, I think about the fact that I thought I could never do that again. I know that's not the case with Joe...it sux, but if he has "good" days, I'm sure you know what I mean. Take care.

[Glenda]

To be completely honest, I'm human and there have been times that I have been angry at God. I came from a very dysfunctional family. I won't go into everything I went through as a child and teen-ager. It's wasn't pleasant. I could write a book. I had rheumatic fever when I was about six and almost died. I remember them bringing my mother home in hand cuffs, because she was in prison at the time, to tell me goodbye. I escaped all the sexual, physical and verbal abuse finally when I married my wonderful husband at the age of 18. Everyone in my family is dead, either from heart or cancer and I have both! I had an emergency appendectomy at 16 because of a beating my mother had given me in one of her drunken rages. I had my gall bladder removed in 1970, had a emergency hysterectomy in 1982. Had breast cancer in 2000, kidney cancer in 2002, diagnosed with chronic myloid leukemia in 2003, had my aorta valve replaced in 2004, was dianosed with Type II diabetes and I have advanced degenerative arthritis. I got the scare of my life a couple of months ago when the doctor thought I possible could have cancer in my remaining kidney. I sincerely believe with all my heart that so many people were praying for me and if there was cancer in that remaining kidney, it was gone by the time I had the CAT scan. You talk about miracles. As for me, I've had several, in fact I'm a walking, living miracle! ! I'm a survivor.

This has been a longer and harder road than I ever expected. I'm not afraid of dying. Like I told the doctor right before I went under for the AVR, "whatever happens, I win." There's something about having a terminal illness that makes you think about what's really important in life. For one, I don't ever take anything for granted. I also appreciate all the little things in life, such as standing up, taking a walk, having a few moments without pain, a child's smile, keeping a good meal down, being able to do my own house work, the laundry, the cooking, brush hogging 46 acres, mowing the yard, working in my flowers, reading a book, even having a normal bowel movement, etc. I could go on and on. I told you I could write a book.:) :)

I don't like living in this land called Cancer. I ask myself many times why do I have it, what causes it and can it be cured? Even though I have been angry I have never cursed God. I know that God did not give me cancer or heart disease. I have probably done this to myself by bad eating, overweight, germs, genetics, etc. But through all this God has had his hand on my shoulder, working through the doctors to heal me, lifting me up to wings of prayers and care, simply wrapping his arms around me when I couldn't even pray.

One of the major things I have learned through all my illnesses is that life is very uncertain. Only God has the master plan. Only God knows that my future holds. He if has taken care of me today, He will certainly take care of me tomorrow.

Nancy, thanks for starting this thread. I know that sometimes it's good theraphy to just talk about where we've been and what we've been through. I can always find someone that's been through so much more. Hugs and prayers are coming your way for you and Joe. You both are such an inspiration to me. I'm so thankful that I found this forum.

[Mary]

Nancy stated, "I don't remember a thread expressing how everyone actually FEELS about what is going on with them."

I don't feel much of anything.
If I thought crying out would help, I'd cry out.
But sooner or later, I'd have to quit crying.

I've learned that my Life is a composite of wonderful events, God awful events, mediocre events.
Stuff happens.

When I get a jolt out of the blue, I decide if I can alter the outcome, try to make plans, and eventually get back to the business of living.

I believe that the good and bad, the Ying and Yang, are my life.
And where there is life, there is hope.

[Gemma]

Nancy, this was a wonderful idea for a thread.

From finding out about Jim's BAV in March 2003, I've felt all sorts of things - guilt (it was me who'd sent him to his GP to find out what was wrong - maybe if I hadn't forced him to go it would've all been fine), sadness (that we'd only been together 3 months, yet I'd known him for nearly 10 years - why hadn't I broken up with my useless ex sooner so I would've maybe been in a position to get together with Jim sooner and enjoy some more "normal" time together before his diagnosis), anger (with all the people who didn't believe there was anything wrong with him), fear (that he'd die on the operating table and I'd never see him again, and that nobody would tell me for days because I'm not his next of kin), frustration (with Jim, for worrying after his op that he wasn't able to do things, and specifically after he developed a-flutter because then he spent months being paranoid that the slightest thing would start it off again).

But, as time has passed I've realised the good in all these things - if we hadn't got together when we did, Jim might really not be here now. We had already made all our mistakes in other relationships, and can now have a great relationship together as a result. He didn't die, and fortunately so far I've been right that the a-flutter is controlled with beta-blockers (or was maybe a one-off - but better to keep taking the pills just in case!). Jim's recently joined 2 motorbike trials-riding clubs and most Sundays is riding round muddy woods and cliffs having a whale of a time. The people who really matter have stuck by him, and those that didn't get it don't have a place in our lives any more.

My over-riding emotion these days is determination - that we will spend our lives together doing just what any other couple does, and that Jim's AVR surgery was a hill we had to overcome together to get on with the rest of our lives.

We may not have a particularly dramatic story compared to some people, and we're fortunate that he doesn't have any other complications, but thanks Nancy for the opportunity to talk about how it feels, not just the practicalities of VR.

Gemma.

[Phyllis]

Nancy stated, "I don't remember a thread expressing how everyone actually FEELS about what is going on with them."

I don't feel much of anything.
If I thought crying out would help, I'd cry out.
But sooner or later, I'd have to quit crying.

I've learned that my Life is a composite of wonderful events, God awful events, mediocre events.
Stuff happens.

When I get a jolt out of the blue, I decide if I can alter the outcome, try to make plans, and eventually get back to the business of living.

I believe that the good and bad, the Ying and Yang, are my life.
And where there is life, there is hope.

Mary,
That's that attitude that is going to keep you going into your 100's. Have read a lot about studys on people who have reached their 100's and that seems to be the same attitude that they all have including my soon to be 102 father-in-law. Keep smiling!:)

[Ross]

Nancy stated, "I don't remember a thread expressing how everyone actually FEELS about what is going on with them."

I don't feel much of anything.
If I thought crying out would help, I'd cry out.
But sooner or later, I'd have to quit crying.

I've learned that my Life is a composite of wonderful events, God awful events, mediocre events.
Stuff happens.

When I get a jolt out of the blue, I decide if I can alter the outcome, try to make plans, and eventually get back to the business of living.

I believe that the good and bad, the Ying and Yang, are my life.
And where there is life, there is hope.
I think truly this is how we all feel. I know somedays I feel so beat down that I wonder if the next day is going to come and others, well I love them.

[sylviayasgur]

when joey and i met some 24 years ago, he told me about his heart condition, knowing that he might need ohs some day.
after 19 years of marriage, joey finally needed the surgery.
was i angry...not really. fearful? i was petrified.
over the years i have not really felt the anger. the fear is what has been a constant underlying feeling. i worry a lot.

i feel sad when i think of our two daughters and how they worry about joey. what saddens me is that they are so young and shouldn't have to carry so much worry, but i know it will only make them better people in the end (it already has).

i consider us so fortunate for having had 19 long years before joey actually needed his surgery_ they were a gift.
but the real gift is now.
we have a great life, loving kids, a fairly healthy (declining, elderly parents) and close extended family.
like karlynn, when i drive down my block, i notice the beautiful majestic trees, the ducks in the pond, the blue skies, i hear the birds outside the window in the mornings, the cardinals...little things are now big.

although i haven't been on much lately, i do lurk from time to time to make sure everyone is ok. i am well aware that everyone has their own issues, some more severe than others.
i know some of you have so many difficulties and i worry about you.

i am so thankful for this site. you have held my hand through hard times; you have been my supporters and given me strength.
i could never have gotten to this point without you.


hoping you are all ok...stay well,
sylvia

[joanne6]

I am still exhausted from our vacation. I know how lucky I am to have been able to take a beautiful trip with my wonderful husband.
This thread is perfectly timed for me today. I have been so depressed for the last few months. Finding out I needed heart surgery after being told for years that mitral valve prolapse does not lead to surgery=that is a joke as many of us know.
I made the decision to leave my job of 28 years as a hospice nurse and become a disease management nurse. This is a job where I don't have the physical demands of the hospice job.
My mom got sick and died in Dec. I still am not making much progress accepting that loss. She was so supportive during my surgery and recovery.
I am just feeling so sorry for myself and I have to much to be grateful for. I too believe I have post traumatic stress disorder from the events of the surgery.
I go back to work tomorrow and hope that getting into a routine again will help.
I am so lucky to have found this site. I pray that you all have long and healthy lives from here on and that we will continue to be here for each other.

[aussiemember]

Finding out I needed heart surgery after being told for years that mitral valve prolapse does not lead to surgery=that is a joke as many of us know.


Hi Joanne,

I too was told that my Mitral Valve Prolapse would never need surgery and was a benign condition. What a shock then to find out last Thursday at my annual checkup that I will need surgery at some stage - unfortunately it looks like mine is not repairable and so I will need it replaced. I'm angry at all the doctors over the years (I was diagnosed at 13 and am now 37) who dimissed my condition as nothing and made me feel like a hypochondriac for asking for yearly check-ups. I'm also angry because it makes me wonder how many others out there with this condition are not having regular check-ups and may end up with considerable damage because things are not picked up in time.

On the other hand reading through this thread is a good reminder of how many others out there are in much worse situations. How grateful I am for this place and for the fantastic support and information it offers.

Jeanne.

[Karlynn]

Hi Joanne,

I too was told that my Mitral Valve Prolapse would never need surgery and was a benign condition. What a shock then to find out last Thursday at my annual checkup that I will need surgery at some stage - unfortunately it looks like mine is not repairable and so I will need it replaced. I'm angry at all the doctors over the years (I was diagnosed at 13 and am now 37) who dimissed my condition as nothing and made me feel like a hypochondriac for asking for yearly check-ups. I'm also angry because it makes me wonder how many others out there with this condition are not having regular check-ups and may end up with considerable damage because things are not picked up in time.

On the other hand reading through this thread is a good reminder of how many others out there are in much worse situations. How grateful I am for this place and for the fantastic support and information it offers.

Jeanne.

Jeanne - as a member said on another thread "Been there, done that and even bought the t-shirt". I too was told when I was 22 and my MVP/MVR was diagnosed that "lots of people have it. It's no big deal." At 26 I began having big problems with arrhythmia. Unfortunately, the first doctor to treat me for it told me I would go back to normal after the pregnancy and when I didn't, he assumed it was all in my head. His first treatment for me after the baby was born was to prescribe Valium, which I never took. Then he prescribed an anti-arrhythmic he knew nothing about and it nearly killed me. (I think it was his sick attempt at showing me I was blowing things out of proportion.) I too, worry about those young adults who are experiencing symptoms and being told they're too young to have problems, or that they are imagining it.

[aussiemember]

Jeanne - as a member said on another thread "Been there, done that and even bought the t-shirt". I too was told when I was 22 and my MVP/MVR was diagnosed that "lots of people have it. It's no big deal." At 26 I began having big problems with arrhythmia. Unfortunately, the first doctor to treat me for it told me I would go back to normal after the pregnancy and when I didn't, he assumed it was all in my head. His first treatment for me after the baby was born was to prescribe Valium, which I never took. Then he prescribed an anti-arrhythmic he knew nothing about and it nearly killed me. (I think it was his sick attempt at showing me I was blowing things out of proportion.) I too, worry about those young adults who are experiencing symptoms and being told they're too young to have problems, or that they are imagining it.

Karlynn,

Thanks so much for your comments - it is so unbelievably helpful to have someone else who has "been there, done that" and who understands what I am going through. Friends try and understand but they take the lovely approach that - "don't worry - you'll be fine etc. etc." - which makes me want to send them off for major surgery and see how they like it.

The other thing is I had a TEE today which confirmed what the echo had said. The procedure was no problems and even the stuff they sprayed on my throat didn't taste too bad. BUT the interesting thing was the cardiologist doing it said I was lucky I had had my children early (23 years old) - as I probably wouldn't have been able to have them much later than that due to my heart. I was NEVER warned about that at any stage - you wonder when they are going to wake up to the dangers of this "benign" condition????

Sorry for my venting - and once again - thanks so much for your support - I don't know what I would have done if I hadn't found this place :-)

[PamO]

I thought about this thread last night watching "Greys Anatomy." A gentleman had an aneurysm and it was surgery or burst. He was on the verge of getting married to a what I call "flightly" Type A person who could handle it. She left him right when his aneurysm burst. He survived and when he found out she had left, his response was, "how could anyone do that?"

The episode reminded me that everyone handles things differently. Some face them head on, some run, some deny them, some drown them or medicate them. It's one thing I also had to learn when my mother passed away. I really saw just how differently my brothers and sisters handled the situation than me and had to understand the fact that they didn't handle it the same as me. It was frustrating but eye opening.

[aussigal]

....keep coming back to this thread...

.....I am joyful that we have accepted our lives.....

.... almost wish that everyone on this planet gets to endure a life-altering event so that they too can learn to appreciate the small pleasures in life so much more than material riches...

[tantekay]

First..to Tantekay..What a beautiful little boy:) :) :) I, too, have an age 2 1/2 year old Grandaughter..Adopted from Russia..Home 1 year March 15th...:) ..she has no problems, but, yet, I worry when mom called today and said she had diarrhea...( We think from cutting teeth)....Your post made me feel..How lucky we are..:)


Thank you for the kind words about Eric. I hope your grandaughter is going well. Eric still has a couple of molars to cut on one side, so I guess we'll be dealing with that soon as well - tee-hee:D After reading your post, I got to thinking that we are all lucky people in one way or another. My father has had 2 heart attacks (due to blockages) and we were very lucky to celebrate his 60th birthday a couple of weekends ago. I was also very lucky to have an aunt that was like another mother to me. Unfortunately, we lost her to a heart attack (don't know the cause) 8 years ago as of 2/17. But I was so lucky to have her there for me when I was growing up. I guess I'm a hopeless optimistic with the understanding that reality just grabs ahold and sometimes won't let go, but I try to find the positive in everything. I just feel lucky that have my children in my life. I have a 10 year old daughter and my son. Although he has a heart defect, I wouldn't trade him for anything - he has the best personality and can always make me laugh even when I'm bogged down with the daily routine, and not feeling too happy. I tell him all the time that he's perfect!! To me he is!!:)

And now I digress -- I'm getting ready to head to the cardiologist for a check-up -- I have PAC's and I'm prone to a-fibs. I haven't been in a few years because things have been going well -- no overnight hospital stays since 2/02(???) and only had one bad incident that had me at the ER and back at the Dr. office while I was pregnant with Eric. I'm assuming that all will go well, and hope that it does. However, after everything life has handed me, I know things can change on a dime. As I've read all the other posts about how they were fine one day and the next their life was changed forever by a diagnosis. My heat goes out to all and hope that everyone does well. As I read some posts I think -- I don't know how I would deal with that -- they are so strong. Many people ask how my husband and I deal with what we are going through. My reply is I guess what mosts reply is -- it's just a part of life, we deal with it, keeps up with the meds, and always hope for the best. So keep hoping for the best, and at least everyone on here was lucky enough to find this site for support.

(Also, Granbonny --- do you still travel in the motor home? My in-laws are retired, and spend most of their time traveling in their motorhome. They winter in Florida, and take trips just about all summer. We now keep in touch through e-mails and phone calls, and see each other a few months a year - but they love it.)

[gijanet]

not now, not tonight...........maybe never. Then I would have to rehash through all of those dreadful moments starting with my brother's death in a car accident, my sister's death from cervical cancer two years later, Katie's arrival and subsequent "diagnosis," then December 2000, when Katie was three weeks old recovering from her first heart surgery and my dad damn near killed himself in a car accident in one of our freak ice storms...........I had my daughter in the PICU at Cook's and my dad across the street in the trauma ICU at Harris Methodist.............

the night of Dec. 12th was so surrealistic, yet still so vivid in my mind. I was in the PICU with Katie. She was one week post-op; the surgery went well, but we were continuing to have some recovery issues and another NEC scare. I was just mulling over whether I wanted to try and make it home on the ice or just stay at the hospital and wait it out. Trip was thankfully spending the night with a friend. Then Katie's nurse tells me I have a phone call. It was the ER at Harris telling me I needed to get over there ASAP as they were taking my dad up to the OR. I just knew this had to be someone's bad idea of a practical joke..........You've been punked.............although that was pre-punk days. Well, it wasn't. I got there in time to ride up with him in the elevator. Got Don and mom on the phone. Don was still stationed out in Wylie - a 2 hour commute on a good day. He was going to try and make it over to pick up mom in Arlington and then head over, but I put my foot down...............geez, just what I needed was one more thing to worry about......them out on the ice when all the news channels were blasting how many wrecks there were.............what good could they do anyway? I was already there. I'd handle it.............that's me..........always the handler..........

I get a few OR updates..............the waiting room is virtually empty except for one other family who was weather bound for the night............hospital staff was skeletal as so many employees couldn't make it in.........six hours later, the surgeon came out to talk to me. Daddy had ruptured his bowel, broken his left hip, and had a huge hematoma on his head. The surgeon had removed half his colon and his spleen. The hip had to wait for now and they would just watch the hematoma for now.................due to his age and the trauma and the fact that he was a three pack a day smoker, he gave him a 50-50 chance of surviving. I wandered across the street to check on Katie, then went back to see daddy in recovery.......then I wandered back and forth between the two ICUs the rest of the night.................and repeated this cycle for another five weeks............

soooooooooooooo, if I allowed myself to dwell on this issue, I would have to relive those next four surgeries; Don's deployment while Katie's third surgery was pending; daddy's being bounced around from one care facility to another because of Medicare, his metal trache and his combativeness and the utter sense of helplessness I felt at the time; the immense guilt I still feel over farming my son out to whomever would take him in during our times of crises and for not being there spiritually and emotionally for him much of the last five years, even when I managed to be there physically; my decision to retire from the guard even though I was due to deploy and up for Major in a year; my current job which is sucking my life's blood and spirit from me; that constant feeling of "waiting for the next shoe to drop" before each PC visit...........and it always did drop, damn it!; and the constant self-doubt of whether I am doing the right thing for my daughter......... the hours of research, the seeking out of additional opinions and others' advice and experiences......... and the haunting uncertainty of what the future holds for my precious daughter...................

I would then have to revisit the age-old question of "Why us, Lord, when so many rapists and child molesters and murderers go unscathed?" ...................when I have, I think, long since put that behind me, so, noooooooooo, I am not going to go back to that place........................it's not a good place to be...............

I just hope God has got all of His ducks in a row when I come knocking on His door.<grin>

Hugs. Janet

[Teresa UK]

Compared to many of you reading this, my health problem is minor. But to people who have no particular health issues, this would be considered a biggie. Like many others here, I have cared for and watched people I love suffer terribly over many years. My dad with heart issues, my mum with multiple sclerosis, my sister with cancer. I can’t even begin to tell you how they suffered in a million small – and not so small – ways; enduring incredible indignity and misery. But comparison is pointless, because the world is a big place and we could each compare ourselves to billions of other people, who may live short or long, healthy or unhealthy, sad or contented lives. For a start, there are billions of people who live short miserable lives in fear from start to finish – through poverty, famine, war, ignorance, intolerance, whatever. So I can’t see it as an injustice that I or my family should be ill when others aren’t, because living life to the full takes many subtle forms. I’m with those who believe that relationships, the mind and emotions are far, far more important than the body. I learnt this from my family who, despite everything they endured, truly “lived”. I think that people who have a difficult road to travel see what others don’t, they feel more deeply and their emotions and relationships are more honest. So, no, I never have thought “why me”. But. Anger? Oh yes. Sadness? Yes, even more so. For all the obvious and not-so-obvious reasons that many of you have articulated so well. People who think they know me say I’m a “strong” person, but the reality is that I put both those emotions in a little drawer in my brain and I only take a peek in there occasionally, when no-one else is around and I’m feeling strong enough to give them hell then slam the drawer shut. Which I do, often.

[901]

I',ve had the thoughts of "Why me, and why not "them"?"

I've come to believe it's devine intervention, it's pat of "the plan"! When the time is right, my experiences will be used to help someone. I don't know who or when but when it happens I'll know that is why I had to climb the mountain.

Although I didn't breeze through, I feel like my experiences were relatively trivial compared to what some members on this site have been through.

I'd like to be able to reach out to all the new people/members that show up in the pre-surgery area and assure them that they will most likely be OK and even if they aren't, VR.com is the place to go to vent or cry or help cheer someone else to the other side.

[Lisa]

Where to start? I think we've all been through the gamut of emotions..mostly I feel numb. Sort of like Ben said, hard to put the feelings into words. I had a good check-up this past Friday, but my it's sort of dampened by the fact that my MOM had an echo a few days prior to that for her BAV. The doc says my new ( 2 yrs this month) valve sounds great, no leaks! I didn't even have an echo done this time, yeah! BUT how am I supposed to feel good about it when my Mom is possibly facing surgery soon. We're waiting on the results of her echo now. She has been in the waiting room for a couple of years now. I lost my brother to this non-discriminating disease in 1991...he had a unicuspid aortic valve. One of my uncles had a BAV replacement a few years ago. My cardiologist is now my Mother's cardio...she retired a this past July and moved to P'cola to be near me (at the age of 54, lucky!). He suggested to me the other day that we should think of having a geneticist study our family because it's highly unusual to have so many family members with same disease....it is a bit interesting....my bro was age 3 when he had his first OHS. I made it to age 31 before my first. My mom's bro was in his 50's. And now my mom. I'm just praying she stays in the waiting room. I don't know what I'll do if I lose her too...it's all so tangled up for me emotionally.

[Debrinha GT]

:mad: The answer is yes, and very frustrated at times too!! Not only because I've been having surgeries since I was ten, but so many other things have made me ask the BIG question: "Why me?" Anyway, first, I was born with this terrible eyesight which has in many ways spoiled things for me and interfered with things I've wanted to do. I'm grateful to be able to see, but it isn't easy having to live your whole life with only 25% eyesight and having to go through all the nasty jokes and remarks that I've had to hear, especially as a child. Then, when I was seven, I got really ill with rheumathic fever and wasn't able to go out and play with my friends until after my first OHS which was nearly three years later. I was just enjoying my teenage years when I was faced with the news that I had to go in again for another surgery. I even remember it so well!! I was 14 then and begged the doctor to let me have my 15th birthday party first just in case. I must say that my life was quite good after that and I did a lot of things: learned English, went abroad, got married and so on, but well, too good to be true!! I had tickets to go to Scotland for a nice holiday with my husband on January 2nd, 1996 when I was told, just weeks before, that I wouldn't be able to go on a plane because there had been a rupture on my valve and I had to have surgey within the next month. My whole world fell apart as I was also trying to get pregnant at the time. Just not fair, was it!!?? Once the shock had worn off, I pulled myself together and hoped for the best. Well, here I am again!! Once more in line for yet another surgery and hoping and praying that I WILL be able to board the plane to New Zealand on April 23rd to meet with my friend Wendy and her family and have one of the best times of my life!!!!!! As the old saying goes: Once bitten twice shy!! And there's still people who ask me if I like having surgeries!!?? That wasn't very nice, was it!!??? I must say though that God has been good to me!! Now, as for losing a loved one, well, many people I loved have left this world but the one who has really left me crying until today, and that happened in 1988, was my step dad's death from ALS. How I miss him!!!!!!!!!!!! But I know that he's watching over me and when my turn comes, he'll be right there to guide me safely into the unknown.
Thanks for reading, and Nancy, thanks for starting this thread. I suppose we did need a place to get things off our chest without feeling reluctant about doing so.
Débora

[baldstuart]

Thank you all for sharing stories It makes our problems seem so small. Stuart has been dealing with alot for the last 7 months after his Ross procedure. He was given a new lease on life then returned to work only to be fired from his job the day he came back.He feels better physically but emoitionally and mentally not 100%. He is having some serious memory loss issues. They say it is from the bypass machine?? His personality has changed and I am sure part of it is because of some depression he is dealing with.His best friends Dad killed himself last Tuesday. This man was like his own father (stuarts dad is an alcoholic) We just passed the anniversary of his sisters death from an brain anuerysm ( She was age 36 and left 4 children the youngest 8 months old with Down syndrome) He is searching for answers that I think he will never find.He wonders why does God take the good ones and leave the ones like his abusive father here? He wonders why he was spared. SOOOO many questions!!! I worry about him ,I am sad for him and YEAH I get mad. But I am so glad we have VR.com I probably use this site more than my Husband but when he has questions or issues we come straight to VR.com and here we get answers But mostly just the feeling of not being so alone in all this. Thanks!!!!:)

[tantekay]

I don't know if this is the right thing to recommend or not, but it's helped my father through depression (due to job problems) and he's had 2 heart attacks, and after finding out my son was born with a fairly complex heart defect and having been through 2 OHS, I finally have decided to read it. It's a book called When bad things happen to good people. It's written by a rabbi - Harold Kushner, but it's kind of written just around our relationship with God. I am methodist, and found a lot of things I could relate to. We are getting ready to go to surgery this summer for my son's 3rd OHS and hopefully the last he'll have to have. We'll still have a lifetime of cardio checkups, more caths and a possible ablation (spelling???) for his arrythmia problems but it's helped me find some peace and strength to get ready for this next surgery. I wish you the best and I know the people here can help. This is a wonderful group.

[Debrinha GT]

So sorry to hear about your little boy! When is his next surgery due? I'll keep him and your family all in my prayers from now on. The name of the book sounds very appealing to us here but can you tell us the name of the author? That would make it easier to ask around the shops, especially here in Brazil where they must have had it translated into Portuguese and perhaps even changed the name. Thanks and take care!
Débora

[Ross]

.... almost wish that everyone on this planet gets to endure a life-altering event so that they too can learn to appreciate the small pleasures in life so much more than material riches...

We should be so lucky. People will never understand until it has happened to them. I don't care how many times we stand here and tell them. They can never fully appreciate it until they've had their own eye opening experience themselves. ;)

[tantekay]

The name of the book sounds very appealing to us here but can you tell us the name of the author?



We now have a surgery date of June 27th. We were told by our cardio to pick a date that fits into our schedule for this summer. UMMMM No good date at all for surgery, nope not a single day, I think we'll just skip surgery... hahaha:D When you know starting the journey that there will be 3 surgeries, you know that last one - the fontan - is coming, but you just never seem ready.

anyway, the book -- here's all the info I can get "When Bad Things Happen to Good People. Harold S. Kushner. First Published by Schocken Books in 1981.

Like I said, this book may not be for all, but I have found it comforting, good luck finding it.

[Andyrdj]

Whilst a positve outlook is great - there are certainly times when being blase and totally chilled about it is appropriate - there are times when the whole "trying to bear up" thing does get on your wick!

And you think "dammit, I'm going to indulge in a little anger and feeling sorry for myself". And why shouldn't you? Seeing healthy people running around carefree is bound to cause envy.

I'm going to be restrained here, however, because I certainly don't want to spread any bitterness to anyone else, or give them a sense of hopelessness.

I'll just say that it does affect my attitude to religion and ethics

Even if I thought there was a God (which I don't - in the cold light of day, I am an atheist), I would refuse to worship him.

BUT I also will not hate him.

Rather, in those times I feel I need to be angry at someone, have someone to blame, and forget my atheist viewpoint, I shake my head at Him and think "You made a bad decision there". I feel disappointment.

I suppose I could believe in a "God" or higher being who was imperfect, whose hands were tied and who has simply made the best out of a tremendously complex job (running the universe).

But to believe in an all wise, perfect plan - that has left me long ago, and for reasons beyond simply my personal discomfort. Certainly, there are people much worse off than me, and knowing that, I truly grieve.

But it can be positive, such attitude. It makes you realise that there is no inherent rightness, no "natural" state that is somehow more desirable than "tampering with nature".

We're all here because someone wasn't happy with how things were, and set out to improve them. Humans have to take on life and win!