Does anyone else experience this??

[Bryan B]

Harpoon,

I too have known for as long as I can remember that this day would "probably" come. But dammit, I had beaten the odds for 43 years...just long enough to think "hmm, maybe I won't ever have to face that day". Growing up with it may have softened the blow of hearing the bad news, but it has still been a tough pill to swallow.

 

[Glenda]

Bill, you are so right. I wouldn't wish all this on anyone. I just kinda get feeling down sometimes. I am so thankful that I found this site. I have learned so much and know that there are others going through the same thing.

Love and God Bless. Glenda

 

[Birky]

I agree with a lot of you that have posted. I always hear that I couldn't believe you have a heart problem. You look so good. I think the only ones that noticed how bad I looked was my kids and husband. I looked so tired all the time before the surgery. Now, other than a few extra pounds, I feel great. My outlook on life has changed immensely. I am here for a visit and I am going to enjoy the journey. People cannot really say they know how you feel until they walk in your shoes. It seems that when you reach this age, everyone has something or another. I don't dwell on it and glad the surgery is behind me. I am enjoying life without be short of breath, tired etc. My bosses are a lot younger than me so it was tough for her to understand until her 47 yr. old husband was in CHF and 150lbs. overweight. Had a stomach banding last year and was in the hospital for almost 6 weeks cause he didn't follow the rules as far as what he was to eat. So what went around, came around. Now I think she gets the picture that life isn't a bowl of cherries. Sorry this is so long.

 

[Peggy in Alaska]

Still Waiting

Still Waiting

Al:

You ask why I am still waiting for surgery. I am still waiting because with Ebsteins anomaly, as with other types of valve problems, you don't do replacement until symptoms are really bad. The doc will continue to monitor me with tests and will be the one to decide when my symptoms are bad enough to warrant replacement. I don't relish the thought of multiple replacement surgeries in my lifetime so I am content to wait till I really need it. Just because I am dog tired after 8 hours at the office doesn't mean it is time to have surgery. I don't have a-fib, or CHF, or fainting or dizzy spells. So as long as I remain status quo, I will not have surgery and will simply have to put up with my Boss saying I look fine.

 

[M&M]

Hi Harry, I'm from New Hampshire toooo. I just wanted to let you know 'friends' and 'family' do that to me too - they tell me I looook great - I think they are trying to cheer me up when I'm not feeling well. I pretty much don't tell them now when I don't feel good. Then when the doctors find something 'wrong' with my heart - my husband will say to me: How come you didn't say anything !!! Because I look marvelous dear.. don't you think...

Anyways, I just wanted to let you know your not alone. I hear ya.. and I can sympathize - when it happens to them - then and only then will they understand. I hope your new doctor gives you some answers and some solutions and more importantly I hope you start to feel better.

Marilyn and ****
Runner

 

[Enudely]

Glenda,
I'm so sorry to hear how bad you are suffering. I just wanted to put my advice out to you.... being overweight is a very serious problem, especially with a heart condition and having to go through surgery. I have been addicted to sugar and have had friends that were so addicted that they stopped all sugar cold turkey. It's really hard at first but after a while you stop craving sweets. You're probably going for the "sugar rush" that it gives you but just tell yourself that it is a false high and will drop you harder afterwards. I am two weeks post op and I thought a number of times how lucky that I'm not overweight... I think it would have been much more difficult. I'm sure being so inactive from all that cancer hasn't helped you. My tip, stop buying sweets!! If they're not in your house, you can't eat them! And ask your doctor for help with losing weight.

 

[Harrybaby666]

My Sincerest Gratitude, Thanks and Support

My Sincerest Gratitude, Thanks and Support

Hi Gang,

I had to be away from the computer for a couple of days, but I wanted to get back on and say a big Thank You to everyone who has replied. I feel so much better knowing that what is happening to me is not in my head, and that I am supported by great people on this website, who drive me with his/her kind words to keep fighting. If anyone else gets to feeling down like I have been, please know that I am right in your corners and I am always thinking of all the people on this forum. You are all in my prayers and thoughts. Harrybaby666

 

[Harrybaby666]

Hi Runner! (Fellow NH resident...LOL)

Hi Runner! (Fellow NH resident...LOL)

Hi Runner,

Thank you for your ever encouraging words. I have been having a really hard time with my health in general, and like you, I am "waiting" for something to be done with my heart. I am in Rochester, and let me tell you, the doctors over here are LOUSY. They don't seem to want to bother, they cancel your appointments on a regular basis, and they don't seem to want to listen to you or to put forth any more effort than is absolutely necessary. I hope that you have better luck with whoever your docs are, and that you will get the finest treatment when you do go in for surgery. Take Care, and please keep me informed as to how your doing.. Harrybaby666

 

[Abbanabba]

Yeah - I just love that "oh it's pretty standard surgery" line. That's when I pull out the "..yeah - that being in ICU after you've been cleft in twain, had your heart stopped, been wired back together and put on a breathing machine until your body can breath on it's own again thing, is a piece of cake!! What the hell am I so worried about?..". That usually makes most people stop and look a little more concerned!! (..heh heh heh ..)

A : )

 

[M&M]

Harry, I haven't heard of 'any' good doctors in that part of our state. You need a 'big' teaching center who deals with alot of cases and can handle your needs. I go to Dartmouth Hitchcock Medical Center in Lebanon - I get excellent care up there. I use to go to Concord - needless to say I was sick all the time. Wrotten meds - wrotten bediside care and just plain inconsiderate and uncareing. They never listened to 'me' and if they did it was always 'stress' was the reason. I even did a cardiac rehab there and had tons of pvcs and so forth - they said oh its nothing. I said yea those were but your not seeing the big long ones I get.. They just thought I was making it up.. Needless to say I ended up being diagnosed with ventricular tachycardia and had to have an ICD. I'd be dead if I had listened to them - but more importantly I would have been frustrated immensely. If you have a PCP who gives you referrals you can always try Dartmouth in Lebanon. There are alot of great cardiologist doctors up there and they are sooo thorough. I've had this leaky mitral valve for 10 years since my heart attack and the doctors up in Darthmouth were the only ones who diagnosed it. They are so thorough and they are "NICE".. They were also one ones who diagnosed my ventricular tachycardias - I could actually see them on the ekg when went up there.. and my interrogation use to show them as well. I don't have them anymore - my doc has them well under control with meds. Thank god.. but the problem is the meds are so strong - I can't walk upstairs very well - because my ICD does not understand the 'upwards' motion and therefore does not give me my needed heart beats - so I get short of breath. Technology has only come so far. But I can run on flat surface and breath great.. I can't complain though because without technology I never would have been able to run 35 road races of which 6 were half marathons last year. My quality of life is very good. He really 'works' with his patients and trys to make them 'happy'..

Hang in there - hopefully good help is on the way. The first thing I discussed with him on my first visit was my 'quality of life' - right in the very beginning - just so he knows - what I want and what I hope to achieve out the relationship. I was 'honest' and upfront and I want the 'best'.

If things don't go well Harry - remember this cardiac stuff is 'big' business and there are lots of hospitals looking for your business. You may have to travel as I do myself - but its well worth the trip. I'd rather make one trip and get good results than to make 10 trips to a local yocal.. who would rather chaulk your problems up to "all in your head" rather than find a solution for you. Sometimes they really just don't know what they are doing and so its easier to blame the patient. That's a bad doc..

Good Luck
Runner

 

[Enudely]

Well, I can't let myself fall for that "it was a routine surgery and not that big of a deal" line..... when I woke up on the ventilator, the morpine pump that was supposed to be supplying my veins was (unbeknownst to the docs) NOT WORKING!! I was on no painkillers when I woke up!!! Yes, this is rare, and I don't want to scare any of you pre-surgery folks..... just remember, waking up on the ventilator would have been MUCH NICER for me, had I been on painkillers!!! (i.e, it could always be worse!!!)

 

[Harrybaby666]

Hi Runner

Hi Runner

Good Evening Runner,

It's funny that you mention Dartmouth Hitchcock...I am seeing them right now for my kidneys (a diabetic's nightmare!!!) I will be going up there for an operation in March to remove a staghorn stone from my left kidney, and let me tell you, I am impressed with the treatment I am getting from them. If I can ever get a car (still waiting for SS), I would definitely switch to them for my cardiology, but right now that's not possible..the only reason I am going up there now is because no other hospital in my area can do the type of operation that I need. I must say that is bad when I hear that you have never heard of any good doc in my area...Go figure...Bad Reputations spread quickly....I have gotten set up with a new cardiologist, and when I see him for the first time, I am going to do like you did and let him know what is up with my quality of life and mention to him that I want a doctor who is going to listen to me, take me seriously, and not put me on the back burner. Hopefully, this will help. I am glad you are getting the care that one in our conditions should expect and deserve. Take Care, and let me know how things are going. Harrybaby666

 

[Marge]

Well, I haven't got a long experience of this, since I was diagnosed with CHF in early November and have only been planning valve surgery since December -- so far most people I've told about the CHF and the surgery have been really nice and concerned, even sometimes, to my mind, overly concerned! I say overly, because as a person with a disability (not heart related) that I've lived with for years, one thing I don't really like is people fussing over me. But say "heart failure" to them and it sounds so ominous, and then they start wanting to carry my groceries for me & assuring me that they are praying for me. They look at me like I am likely to drop dead right in front of them without warning. I have to reassure them that it doesn't mean THAT! So now I have stopped mentioning "heart failure" and I just tell them I am having surgery to "fix" a leaky valve. Leaving the impression, I suppose, that after it is "fixed" all will be well and I'll be as good as new (not exactly true because the surgery won't reverse the damage already done to my heart, but I'd rather not go into explanations).

I did get the "oh, open heart is routine surgery these days" line from one idiot when I went to a big lunch last Saturday, but another guy who was there, who had CABG a year or so ago, quickly set the person straight. "It may be routine for the surgeon," he said. "It's not routine for the PATIENT." He proceeded to talk about some of his experiences and the "routine surgery" guy turned rather green and just stared at his plate for a while.

 

[Bryan B]

Anna,

"..yeah - that being in ICU after you've been cleft in twain, had your heart stopped, been wired back together and put on a breathing machine until your body can breath on it's own again thing, is a piece of cake!! What the hell am I so worried about?.."

I read your post today before a visit to my PCP for a follow up visit for my endocarditis. I was talking to the receptionist and told her of my impending surgery and she gave me the "routine procedure" thing. I thought this would be the perfect time to use your quote, but the "cleft in twain" part may have confused the receptionist (not to mention me).

 

[Harpoon]

"cleft in twain"

Cut or split down the middle....





Yes, some times I can be a smart ass, but usually, I'm just an ass.....


It's well past my bedtime and I'm up helping my wife put together her Avon catalogs and leafing through a cookbook entitled, "How to Make Love and Dinner at the Same Time" of all things....


Looking for slow cooker soup recipes.

 

[SHerrin Hutt]

Barry

Barry

I've been there too! I have had medical problem since 1992 but everyone looked at me like they thought I was the crazy one. I felt like the little boy who cried wolf. But in the end it really was something there after all. 12 yrs later and many-many phy. and specialists and lots of test and different hops. Im finally feel half way normal. That was the problem most of the time you could not tell by looking how ill I was. I was carring around oxygen for three yrs. but that didn't keep me down. I went to Ny, Jamica on a cruise Boston , La, to visit my daughter who as a traveling Rn. I ended up with alot of back problem from carring the oxygen around but I wouldn't have missed out the fun for anything. I have been . I have been SS disabilty for 6 yrs. after I had my second open heart surgery I was getting out my car in a handicap space and this guy made a remark I didn't look sick. ( MY responce was you don't look look Like a ass but you sure act like one.) I usually don't react to theses kinds but it was just a bad day.

Sherrin Hutt
Valve REPAIR 5/99
VALVE REPLACEMENT 3/02

 

[Sunshine susan]

Wow--this one really hit close to home--no pun intended. My AVR with St. Judes was 2/99. I was a model patient both because I wanted to be and because I was lucky. My friends and co-workers were then and still are (ie INR tests, follow-up appts, etc.) fantastic and amazed at my resilience. My family (actually my husband's family as my own of what I have left live in another state & I don't see them much) on the other hand act like it never happened. (My daughter was very young at the time so I don't count her--now a pre-med student she gets concerned now because of all I do.) Like it didn't even happen when it did. Their reaction to me is not something I can really explain. Mostly like non-reaction. "Oh dear dear, now we must tip-toe around like this never happened." I am and was sole support of my family, but that has become the expectation--whoever heard of an able-bodied man who lets his wife with the heart & bone issues continue to solely bring home the bacon. I am a professional and love my work, but do get tired of other family members being so consoled due to arthritis, sinus procedures, head colds, a sore foot and a myriad of other constant complaints. I don't need consoling, but perhaps some acquiesence that I cannot forever do it all alone while everyone else has their hand out. As you all said so well, only those in the situation understand how you feel, before and after surgery. I felt survival of the whole thing was a new beginning---this chick may soon be looking for yet another new beginning as I march off on my own. This is so far down in the post that hopefully no one will actually read it, but I feel better having said it. Susan

 

[McCln]

Hi Harry

Hi Harry

I can only go by what you say about your friend. You may be talking too much about your health issues. Most people who have had bad experiences with the medical arena, do not feel comfortable talking medical conditions with others. There are people who are afraid of doctors and hospitals. They are not trying to be unsymopathic to you, just the medical talk mat make them feel uncomfortable. Just try to be calm and friendly to this friend and try to talk about other things besides health issues. Give it a try. Not everyone likes to talk about health problems and hospitals and doctors. Take it one day at a time and you will feel better soon enough.

Caroline
09-13-04
Aortic valve replacement
St. Jude's valve

 

[delvoura66]

Dear Harry,

I have gotten to the point where on the days that I am feeling so
bad. I just keep it to myself. This surgery does change you, it effects your daily life and quality of life. After 2 years I don't expect others to understand what I go though. My fears and days of unbelievable fatigue and depression. Most people will look at you and say there is nothing wrong. They could never
comprehend what our lives have become unless they live it. Don't
stress about your friend.

 

[Harrybaby666]

Hi There Delvoura!!

Hi There Delvoura!!

Hi There Delvoura,

I just wanted to contact you and say thank you for your kind words. I still haven't had any surgery yet, but today I see a brand new cardiologist, and I am in hopes that he will help ease my mind alot by telling me outright what is EXACTLY wrong with my heart. So far I know that I have Mitral Valve regurgitation (actually, all 4 are leaking, but the Mitral Valve is the worst) and that I have cardiomyopathy and CHF which I suppose is really the whole thing wrapped up into one nice bundle, but I still feel like my last cardiologist left alot of information out that I should have been told. I pray today that I will get the difinitive answers that I need. I see by your profile that you and I are the same age. Isn't it aweful to be so young and be so sick...? Please keep me informed as to how you are doing, and know that you can always contact me if you need some extra peer support. My email is: [email protected] or you can pm me also. Take care, and once again, thank you for your kind words. Harrybaby666

P.S. You have such a pretty name. H.