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]

Thanks

Thanks

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]

Anger

Anger

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]

Feelings

Feelings

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 .... 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! )
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 ...

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. 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]

The fun never ends!

The fun never ends!

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.
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 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]

My Mom and I

My Mom and I

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

 

[Guest]

*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'

 

[Turkey Hunter]

Nancy, thanks for this thread

Nancy, thanks for this thread

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