Anger and sadness

[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]

Thanks and we're all lucky

Thanks and we're all lucky

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 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]

Nope! Not gonna go there............

Nope! Not gonna go there............

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]

Things that make you go hmmn

Things that make you go hmmn

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]

Do I get angry!??

Do I get angry!??

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]

to baldstuart

to baldstuart

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]

Sounds interesting!

Sounds interesting!

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]

hope this helps

hope this helps

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 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]

How it affects your outlook on life

How it affects your outlook on life

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!