Anger and sadness

[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). 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]

Definite Anger and Sadness!

Definite Anger and Sadness!

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]

We are all fortunate

We are all fortunate

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]

Life is short

Life is short

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]

In an instant

In an instant

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]

thanks, nancy, for starting this incredibly sensitive and important thread

thanks, nancy, for starting this incredibly sensitive and important thread

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 needed this today

I needed this today

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.