Does anyone else experience this??

[Susan BAV]

I stumbled across this thread and really appreciated it. May I whine a little (more) ? I'm in a bit of a mood (again) so will you bear with me ? After I get through venting, I may or may not hit the "submit reply" button.

Early on, as a young person, I tried not to talk about my heart problem because it was embarassing to me, to be defective. As an adult I found that if my heart condition did get brought up, which was seldom, I would sometimes be disappointed with someone else's story of their (usually) self-diagnosed heart problem. When someone needs a little sympathy or compassion for a health issue they are dealing with, I really try not to "outdo" people with my health issue. And it annoys me to not get the same treatment. My dad called it, "stealing other people's thunder," to "outdo" their story.

Also, heart patients often don't look like they're sick and/or dying. We might get off-color sometimes or glassy-eyed or puffy, but so do a lot of other people who aren't sick and/or dying.

Anyway, when I was getting sicker and sicker in the recent years and especially last year when I was pre-op, I tried not to talk about how I felt. And I didn't realize it was from the bad heart valve at first anyway. So then my surgery came up suddenly and there were a lot of my friends who didn't even know I had this problem. But they rallied around and were very supportive. I think a lot of it was from shock.

But here I am, nine months later and feeling pretty darned good , and I've had a few friends recently hint (out loud to me) about whether I needed heart surgery or not. I know it's from their ignorance. But it shocks me and it hurts me . I refuse to be nasty to them but I have told a couple of people that I wouldn't be alive right now, had I not had the surgery.

Maybe I expect too much. I know I can't change other people; I can only change my reaction to them. If I end up submitting this, I'm afraid I'll be embarassed about it later but I might send it anyway because a lot of us VR.COMers probably feel this way sometimes.

Any comments? I know there's not really an answer; we just have to deal with what we have to deal with. That's just one more reason why I'm so glad I stumbled across this site last summer, just one more reason why I'm so glad Hank set this site up! Because you all have dealt, or are dealing, with this too. I feel better already but I would like to hear your comments .

 

[Harpoon]

I think you'll find as more people reply to this that a LOT of us have experienced the problem you've described, where those that are around us find it hard to believe us when we say we have a heart condition and are really sick.


We don't really LOOK sick unless we're REALLY sick (like on death's door sick) and that's hard for most people to figure out. We FEEL it obviously, those that are VERY close to us, spouses mostly or parents, might notice that our activity level has been reduced. We just don't run as fast or do as much, it takes more effort to do laundry and other errands around the house. You might have difficulty sleeping or have a loss of appetite, those things aren't obvious to everyone who knows you...

It's hard to describe these kinds of symptoms to someone who hasn't experienced them first hand and it's VERY easy to dismiss symtoms like fatigue.

Before I had my tricuspid valve replaced my health had been slowly deteriorating over the course of about two years. At first it was REAL subtle things like a light, chronic cough and a little swelling in my ankles that you only really saw at night when I took my socks off before going to bed. After a while the cough got worse, but there really wasn't anything that looked outwardly "wrong" with me until about 4 months before surgery when I started getting VERY sick. I wasn't holding food down, I was ALWAYS puffy and my skin had a yellowish tint to it from kidney failure. I was slower, my voice was hoarse from coughing all the time and my mood was one of constant misery.

Even then though, I had a lot of "good moments" and only the people that I was around all the time knew I was getting sick, though even a few of them didn't really know what was going on or how serious it was until AFTER I had surgery.

One guy's still an idiot about it, but that's another story.... =)


Before I went in for surgery I wrote an email letter to just about all of my friends and family explaining what had been going on and what was going to happen. I felt it was important that people were NOT left out of the loop on this thing and I invited those that got the letter to pass the word around to other friends and family who didn't use email or whatever.

By the time I went in for surgery, everyone that was "close" to me had at least some idea of what was going down and why and I got a LOT of support from everyone.

There are still a few people who have no idea what happened. There are a few people who have actually criticized me for missing certain things while I was in recovery. My wife and my father went home from Cleveland for less than 24 hours while I was in pICU to take care of bills and other affairs before returning to their vigil at my bedside. During that ever so brief stop at our house the phone rang, it was a person I used to work with covering local high school sports for the public access TV station. He wanted to know if I was planning to do any basketball games in the coming season. My wife answered the phone and just about ripped his head off through it! She answered, "Steven's in a coma on life support in Cleveland right now...."

Her reply was, "Well does he know that?"


Some people will never get it. They know something's up maybe, but not the magnitide of what's happening.


One last thought, anyone who thinks open heart surgery might have been "unneccesary" just isn't worth wasting your time with.

Granted, there ARE some quacks out there in the world who will do such things to people, no profession safe from idiots who just do stuff without any regard for the people they're doing it too. Most places though, if you're having open heart surgery it's because you NEED it. Open heart surgery in and of itself isn't exactly safe and people don't always survive open heart proceedures. It literally is a matter of life and death and if someone doesn't understand that, they're not worth your time and energy.


Or at least that's MY take on it. I don't tolerate much sometimes!

 

[atydev]

Susan

Susan

I am in the same boat with you. Except my problem is my family. I was fine and ran circles around all of them untill last year when I got endocridites. I went down hill fast. I lost my job could barly keep up with my house and errands. I stayed so tired but I kept on. My family never pitched in to help so if anything got done mom had to do it. There for mom is ok cause mom still does everything for us. I got home from my OHS on June 28th 8 days after surgery my husband had me fixing his dinner plate. I was staying at my mothers so she was cooking and taking care of me. By the 3rd night my husband coming over after work my mother finally chewed him out and told him if he wanted to eat he could fix his own plate. He played it off as if he did not know I was fixing it. After 2 wks at her house I was ready to come home. I have been doing laundry, shopping, cooking, and most all house stuff. I make my children mop and vaccum since it hurts to much for me to do it. My husband is the worst of them all he acts as if I have never been sick. My incesion is badly infected right now and I am hurting really bad due to the infection. Still no relief. I feel your pain and Harry's too.

 

[SHerrin Hutt]

Hi
I think everyone has been through it at some time during their illness. I am now having trouble with cardiomyophy and it does show by looking at me. But it is real and my family are supportive as they know how, but they still just don't get it.I have spent 10 yrs with valve problems and never knew till it I was really sick what the problem were. Most of the Dr.'s thought I was crazy. My thoughts and prayers are with you. Cause I have been there.

 

[Sherry]

April, I'm concerned.

April, I'm concerned.

April,
I've read your recent post about your spouse not helping you and your other posts about the infected incision site and the clinic not giving you your INR numbers. I don't know what I can do for you, but I must say, you will need to become more vocal with the clinic about the coumadin management, and perhaps, as was suggested on the other thread, you need to sit down with your PCP and discuss all of this with him/her. The thought of you having to be driven 80 miles one way to be treated like crap just makes my blood boil. Plus, you need to go to the local E.R. about that infected incision. (Also, your husband needs to pitch in and help. I'll keep any further comments about that to myself.)

 

[ALCapshaw2]

April,

Did anyone tell you to limit your lifting to NO MORE THAN 5 POUNDS for the first several WEEKS? And then to only increase slightly for several more weeks (20 pounds I think). I've forgotten the exact details.

Please tell your PCP ALL of what has been going on since your surgery and ask for GUIDELINES for your recovery. Perhaps HE (your PCP) can give your family a Wake UP call about how much help you need and how limited your capabilities will be for at least 6 weeks.

Recovery comes in stages.

For the first 2 weeks you wil barely be able to get up and move around. Sleeping is best done in a recliner or with large pillows for support.

For the next 4 weeks you will be able to move around better but your sternum will still be VERY soft and can easily be damaged by overexertion.

Your sternum will not be FULLY healed until approximately 3 MONTHS post-op.

MANY patients continue to heal for 6 months to a year, even longer for older patients or repeat surgeries.

Heart Surgery is MAJOR SURGERY and it takes a long time to recover. It's pretty clear that your family does NOT 'GET IT'. I hope you find the support and care you need to make a successful recovery.

'AL'

 

[atydev]

Sherry

Sherry

Sherry I do plan to get more info on friday when I go back to check my levels. I promise. As far as my husband goes we had been married six months when I got sick and I am not sure he really understood my condition now. He new I had mitral valve regur. and Wolfe Parkinson. He knew I may have to have valve replacement one day. He just did not understand in sickness and in health. I finally got tired of keeping my mouth shut and told him what I thought of his inconsideration and lack of help. I got the comment why are you harping on the past. The last few weeks was the past to him and he no longer seems to think I need help. I am not gonna fight that one. I have taken care of me and my boys for the last 8 yrs by myself and done very well. I can continue. Boy is he gonna get knocked for a loop when I tell him that I had a biopsy done today and the doctor thinks it is cancer. Talk about recovering....he will either leave me on this one or die of unbelief.... Life sure seems to be getting more interesting by the day. Oh and I did get antibiotics today cephalexin 500mgs. 4x's a day. I asked if it would mess with my coumidin and he said everything messes with your coumidin. You need something to clear that up....

 

[Sherry]

April,
First of all, I'm glad to hear you're on antibiotics for that infection. Yes, some do affect your INR. I've found that it sometimes takes a while for the effect to take place, so I would have it checked a few times in the next two weeks if you are able to get it done closer to your home. Is that going to be an option? As for all this other new development with your health, I will keep you in my prayers. You certainly have been through way too much for a young woman. Try to stay strong and always remember that you have to be vocal and stick up for yourself, which it sounds like you're starting to do. Also, feel free to unload on us here on the boards, whether it's heart-related or something else. That's what we're here for.

 

[Susan BAV]

April -

Wow. I really hope things get better for you. And soon. Best wishes.

And SHerrin -

My dad had hypertrophic cardiomyopathy too and I remember how tough it was for him, a big strapping healthy-looking man, because he didn't look sick at all. Best wishes.

 

[atydev]

Susan

Susan

It is tough and no one understands it and I do tend to hide alot. I need help not pity and that is what people tend to give you when they think you look or not looking well. I had that part of my heart that got thick removed when they did my valves June 21st. So I am hoping that my heart will be all new and ready for a few 50 or so years left. I will be fine I get frustrated sometimes as anyone else here does. There are so many here that are worse of than I am. I do believe God never gives you more than you can handle. What he does hand down is to make you stronger. I vent sometimes but deep down I know it is for a reason.

 

[Harrybaby666]

Yes...It's Me Again!!! LOL

Yes...It's Me Again!!! LOL

Hi There All You Wonderful, Terrific, Special, Comedic and Most Of All Supportive People At VR.

Just thought that I would pop back in and say hi there and to let some of the latest replies to my "Have You Experienced This?" post.

Let me tell you guys, I have found it best to do like some of you have suggested and have stopped talking about what is wrong with me, and you know, for some reason, it has made these "people who I seemed to bother" even MORE curious.. You just can't win..LOL I do have to say though also that these people who didn't want to listen back a few months ago, are now seeing that I am becoming more and more limited as time marches on...so I guess the proof really is in the pudding.

April, You would think that your husband would be the most supportive one of the bunch. Is he the type that needs visible proof to really believe what is wrong with you? I am getting the same problem from my "father" (I say this because he has treated me like dirt all my life and I don't consider him my father-the dirtbag...oops. I wasn't gonna do that..lol ) I am getting that from him because he found out just before me, that he needs a heart transplant, and it was just a coincidence that I found out about my CHF pretty much right after he found out about his, so I can somewhat understand why he would be having a difficult time understanding my health, but your husband?? I mean obviously, he has seen you in the hospital and recouperating..I hope that he now understands your condition for everyones sake.

I understand to some degree how you feel physically, because I haven't had anything done yet, but I know things are getting worse. I have been absolutely EXHAUSTED more and more, and I seem to be getting chest pains now by doing the simplest of tasks. Take last week for instance: I have no car right now while waiting for Social Security, and I had to get to the Pharmacy to get my insulin needles as I had run out, Sooooooo....I walked from my house to the pharmacy which is 6 miles away, and I made it to the Pharmacy and 1/2 way back before I couldn't go any further, and luckily a friend picked me up and brought me home, but I have been having alot of chest pains since, shortness of breath and tiredness. I ended up calling my cardiologist and he said that I had over worked my heart and that I had to take it alot easier. So needless to say, it has been a wake up call and a snap out of the denial phase and accept the fact that things are getting more difficult every day-things that a 38 yr old should have no problem doing...Talk About A Reality Check!!! I just wanted to let you know April, that I am right there with you when it comes to physical symptoms, as I am with all others. Please take care of yourself, and know that I am thinking of you and all the others. Harrybaby666

 

[atydev]

Thanks Harry

Thanks Harry

Well no he still does not understand. My incision got infected and badly. Well do ya think I got help nope. Matter of fact now I am still over doing it so much that my incision is now busted from the middle of my chest to the end of the incision. Another words half of it is open. I am still cooking doing laundry fixing his lunches every night setting the coffee pot doing the grocery shopping etc. same ol stuff before and after I got sick. I have learned mothers are never allowed to get sick. This is a requirment of the job. He was really supportive at first. When I got endo. he waited on me all the time. Now he could care less.....oh well I gotta do what I gotta do. I am not complaining really. I know in time things will get better for you. Please be careful walking in this heat. Take care of you but don't give up. I think that is what keeps me going, that is I have so much to do. I can't leave this world till I get it done. Or bug everyone around me to death one or the other. keep a positive attitude and don't wait to long for surgery. I still am tired and sore but I think I am able to tell the differance already. I am almost 5 weeks post op. I do feel a difference already. No chest pains other than the sternam but that is from being cut open. I do have involentary gasping for air but not really shortness of breath at least not like it was. Best of luck to you and keep us updated on your situation.

 

[ALCapshaw2]

April,

I am seriously concerned for your welfare.

Doing the Laundry is one of the WORST things you could do post-op. That in itself could be the reason your incision is opening up. If you are 'split half open' you need get to get FIXED IMMEDIATELY. This is SERIOUS!

SOMEONE must care enough to get you to a hospital with an ER or back to LSU to get repaired. You may even need to be readmitted. Where is your mother at your time of need?

 

[SHerrin Hutt]

Hi April,
My heart goes out to you! If not for my daughter April Too! the Rn sitting down with my family and telling them what they need to do . Maybe you could get some to talk to your family and tell this is the time you need their help. your cardiologist's RN maybe. Mine is the sweetest or even your Dr.
It sounds like they need a reality check. Having had two open heart surgery I know you have to take care of yourself. I think it time you go on strike. I fear for your well being!

 

[atydev]

Thank you

Thank you

I am glad someone cares but I will be fine I promise. I did go back to LSU today and I saw some resident. My surgeon was in surgery and she nor Dr. Wolfport could not see me. He saw my incision and he packed it with medicated gauze gave me a bottle of the stuff and told me to pack it 2x's a day and come back in 2 weeks and finish the antibiotics that my PCP gave me on monday. I will say it is not oozing as bad so that is a good thing. Now it just keeps splitting. I asked the resident about that and he said if it gets worse come back...... it is half way split open....go figure that one. He said it is ok cause my breast bone is not exposed. I feel that at times like these and being at the mercy of a teaching hospital all I can do is pray and believe God has it covered. Oh my numbers were at 1.6 today so needless to say I am up to 10mg everyday. I am thinking that is a large amount. I guess I just eat to much green leafy veggies. They want me between 2 and 3. Al I do try to be careful and lift one piece of wet clothes at a time and put in the dryer. It hurts some doing that pulling but I am being as easy as I can. If my oldest son is around he will do it for me , unfortunaly he is 13 and all's he wants to do is run off and ride bikes go crawfishing, basketball, baseball,jumping on the trampoline anything but hang out in the house with me...school starts here in 3 weeks and I feel guilty ruining what is left. Oh he also has mitral valve regurg. and as you see he has not slowed down one bit since he found out about it...Thank God Thanks everyone for caring...sad though you guys care more than my family...except my mother but she has been occuppied for the last week or more and has not been available as much lately.

 

[Harrybaby666]

Hi April

Hi April

April,

Just wanted to let you know that I have had a difficult time with the Doc's in my area, so I know how your feeling with the "at the mercy of the teaching hospital" routine. The only difference is that the doc's in my area do not care enough about those who are on Medicaid like myself, and don't put his/her whole heart into the matter-they ARE willing to accept all the $$ that Medicaid gives them though...How convenient...as for the lack of support and understanding that you have received, FOR GOODNESS SAKE PLEASE, PLEASE TAKE IT EASY, AS ALL OF EVERYONE ELSE HERE ARE CONCERNED ABOUT YOU, I AM RIGHT ALONG SIDE OF THEM HOPING FOR THE BEST FOR YOU, AND YOUR IN MY PRAYERS..Take care, Harrybaby

 

[atydev]

Harry

Harry

Thanks Harry I am trying to do better I took a nap today. Have not done that since week 2 post op. I now have a cold. Sneezing my sternum out of wack. So now on top of an infection, busted open chest and a cold I think my body is saying stop. Needless to say I am going to do better. I have to my body is giving out. My husband did mop after he got home today. That was his way of saying I am going to my friends house for the rest of the evening. He just got home and went to bed.
I am sorry you are going thru the same thing. I am not on medicad just yet. I am paying out of pocket no insurance right now. My disability was just approved a month ago but has not gotten rolling yet. I was glad to know I was approved back to July 2003 that is when I had my stroke and got endocridites. So I hope when medicade kicks in they will cover some of the medical bills I have piled up here on my desk. Over 50 grand worth... You are right thought 9 out of 10 times doctors forget why they became doctors and all that they see are dollar signs. Well sometimes it is the hospitals that make them that way...looking out for there bottom line.

 

[Harrybaby666]

How hard of a time was it for you to get SS?

How hard of a time was it for you to get SS?

Hi AGAIN April...LOL
Just wanted to ask, did you have a difficult time getting SS? I am having a beast of a time getting mine--fortunately, my last denial (I am on my 4th appeal) was overturned by the administrative law judges in Virginia in March, because they stated that Judge Harap, the judge here in New Hampshire did not look hard enough at the seriousnesses of all my illnesses (I have Diabetes, Asthma, Arthritis, Periferal Neuropathy (Nerve Damage) and of course my CHF and Valves...I was just wondering what it takes to prove to the judge that I really am sick and that I need the SS. I hope yours kicks in real soon, as I know all about the unpaid medical bills as I have had some in the past and I know it's not fun..I will pray we get through our messes with ease and grace...Now if I can find ease....and Grace?? OH GRAACE...where art thou?? LOL (I am sorry for the bad humor, I have had a tiring week and I do get silly-It Keeps Me SANE!! LOL)

 

[SHerrin Hutt]

SS Disabilty

SS Disabilty

Hi April,
I am on ss Disabilty since 1996 it took me three yrs to get it and I was dieded once but the school corp. I was working for was doing all the fighting because they had to pay if ss didn't because of the school insurance I took out for a $1:00. I didn't know what it was really for at the time. I draw as much a a friend of mine that has to pay for her family health insurance. I have my primary Dr. to thank for it. He tried to get me to quite for a long time befor I did. The school corp. was making so stressful for me to go to work. They had a fit every time I had to take off for a Dr. app. The dr. don't have office hrs. after 4:00. I have been afraid to change primary care Dr. because he has supported me through all the SS crap. I have be through two review since I started getting it and it was a pain in the ****

 

[atydev]

I guess I am lucky

I guess I am lucky

I guess I am lucky I applied in july of 2003 I was denied in sept.03 I appealed and was approved in June of this year. I got a letter stating I did'nt even have to go to court. I was really happy I found out one week before my surgery so that took a real big load off. My review they said will be in one year. How does that go what do you have to go thru or do?