Anyone as frustrated as I am?

[Harrybaby666]

Hi Gang,

Just wanted to ask if there is anyone as frustrated with symptoms as I am? It seems as if I am becoming more and more limited everyday...yesterday, I went out shopping with a friend and just by walking around I got VERY SOB, then EXTREMELY tired. Earlier in the day, my heart was pounding so hard that I thought that it was going to fall out of my chest, and the day before, I simply laid down as I was feeling really tired and weak and I was hearing a horrible "swishing" sound coming from my heart. I don't mean to vent, but, I am finding that even doing the simple things gives me alot of symptoms such as chest pain, pressure and the other above mentioned symptoms. I just thought that I would ask, thinking I might at least not feel as disgusted with my health as I have been lately. Thanks for listening...Harrybaby666

 

[fyrfytr]

Hey Harrybaby666
I used to have feel the same way. It seemed that everyday it was something different. Since my surgery I have felt Great, getting stronger everyday. I know when I am overdoing it and need to slow down, but am doing just fine.
If I was you I would sure let me Cardio know what is going on.
Take Care

Dave
_____________________________
Surgery: 4/21/03
Aortic Aneurysm Repair
AVR, with a St. Jude Mechanical

 

[Herb M]

Visit your cardiologist. He may just assure you that nothing is really bad.

You may have to pace yourself until you get over your bad feelings. My cardiologist suggested I take a nitroglycerin tablet a few minutes before I expect to exert myself to avoid angina. I found I really did not have to do that because I have learned to pace my activities to avoid discomfort. I rermain very functional.

 

[Nancy]

Hi Harry-

Write down each and every symptom you have in a little notebook. Date each entry and also indicate what you were doing at the time. At the next cardiology appointment bring this with you and discuss it with the cardiologist. Symptoms can play a part in the path to surgery.

I forgot, do you have a surgery date yet?

Also you should be calling your cardiologist with any significant changes in how you are feeling.

Take care,

 

[hensylee]

Call your doctor's office - the nurse will reassure you or have you come in. Don't let it go.

 

[Harrybaby666]

Hi Fyrfytr

Hi Fyrfytr

Hi Fyrfytr,
I have been complaining to the cardiologist and nurse, but I think that because I am on medicaid that they put me low on the priority list. I am getting a second opinion in February with a new cardiologist and will be hoping for better answers than this one has given me. As for doing things, I am finding out real fast what I can do and what I can't do and I am trying to accept things for the way they are, but it is sooo hard at times. Thanks for the support. Harrybaby666

 

[Harrybaby666]

Hi Herb

Hi Herb

Hi Herb,

I have learned to pace myself, and here is something that I seem to have found out...I had to go off my lasix for a day because of kidney surgery I had last week, and wam! I paid for it all day yesterday with sob, and fatigue. I will tell you though that the medical practice here in my town, Rochester, New Hampshire, really leaves alot to be desired. I have found that the doctors are really uncaring to those who are on medicaid and just don't want to be bothered with us, which is evidenced by trying to get them to understand that these symptoms are real and just because a test says your ok, it is no reason to rule out other possiblities that could be contributing factors. Thanks for your support and kind words. Harrybaby666

 

[Harrybaby666]

Hi Nancy...

Hi Nancy...

Hi Nancy,

No, as of yet, I don't have a surgery date, but as of my last echo, my valves seem to be doing better, so I don't know whats going to happen, but as I have mentioned to the others, the doc seems to be blowing me off, so I am going to another cardiologist in February and get a second opinion, I am however doing like you suggest, by writing down all my symptoms and documenting the date, time and what I was doing at the time and keeping a journal to present to the new cardiologist. I really feel as though because I am on medicaid that this cardiologist just doesn't want to bother with me considering the fact that he cancelled 4 count them 4 of my schedualed appointments without trying to reschedual them. As I have told the others though, I do know that I am suffering from Congestive Heart Failure, and if I even miss one day of my Lasix, L@@K OUT! I am amazed at how much of a difference in how I feel if I take the lasix as opposed to if I have to miss a day (I was told to go off it for a day while I had kidney surgery last week). I just get so frustrated at the symptoms, and trying to pound it into Dr. Funk's head. As for my valves, he hasn't told me if anything will be done about them, but I do know that he has me down as having Mitral Regurgitation, but at what level I do not know. Thank God for Second Opinions. Thanks for your ever giving support and advice, I am glad I am not alone. Take care, and I hope all is well with you and your hubby..Harrybaby666

 

[Harrybaby666]

Hi Hensy..

Hi Hensy..

Hi Hensy,

I have decided to seek out another cardiologist for a couple of reasons. First, as I have told the others, I really feel as though because of my medicaid, he is not taking me seriously, and putting me low on the priority list, and second, in the past two weeks I have seen him back-pedal on what he has said in the past, and therefore, I cannot trust his word. I have called him time and time again, and all I get is his nurse, and she seems to have quite the lack of interest in what is going on with me, and because of this, I feel as though I cannot communicate with them well. I guess I just had to vent again, as I can deal with these issues to a point, but then I have to get it out, but at least I am learning to fight back instead of letting them run me over....Thanks for your caring and ongoing support....Now, How are things with you? Are you feeling great or what? I have seen all the jokes that you and Ross have been flinging out there for us to read, and they are hilarious!!! I hope all is well with you and yours and look forward to reading more of your posts. Thanks again, Harrybaby666

 

[KimC]

Harry,

I'm sorry to hear of your suffering. Try to keep focused on a good book or spend time talking with a friend or loved one.

Please keep us updated. I hope your doctor can help.

Peace,

 

[Harrybaby666]

Hi Kim

Hi Kim

Hi Kim,

Thankfully, I have a good friend who is really in the same boat as I am and it does help to talk things out with her, although I sometimes I feel as if I might be burdening her with too much, but I am glad she is there. Thanks for caring. Harrybaby666

 

[Nancy]

Harry-

Are you keeping to a very low sodium diet? That can make all the difference if you have CHF. It's a good thing you have a new cardiologist.

Hope you feel better.

 

[Harrybaby666]

Hi Nancy,

Hi Nancy,

Hi Nancy,

Yes, I am watching my salt...and carefully. especially since my weight seems to rollercoaster between 4 and 8 pounds from what I normally weigh...that's enough to scare me in itself...Harrybaby666

 

[Kevin M]

The comments to date make good sense.

Try your best to keep your mood up. It's hard because it feels like you're slowly deteriorating away sometimes. I hope your experience is like mine. Immediately after surgery, I felt far better. Easier to breath, no sleep apnea, no pounding in the chest.

Keep your chin up and stay strong. You're going to get through this. Remember, there are always good days and bad days. Today may suck, but tomorrow will probably be better.
Kev

 

[Harrybaby666]

Hi Kevin

Hi Kevin

Hi There Kevin,

I really appreciate your moral support. it is amazing how just a few kind words can help a person, and as I have told others, this keeps me going although I have my bad days like everyone else. Before your surgery, you must have felt the same way I do now, am I right? I get so tired and frustrated between the symptoms and the not having the support or understanding of the docs that it does get hard for me not to give up. I almost have to slap myself into remembering that it's MY body, and that I have the right to quality medical treatment and understanding. Thanks for your words of support. Harrybaby666

 

[atydev]

I am going thru the same

I am going thru the same

I too am going thru the same thing. My job never offered insurance and so I am going to a teaching hospital. First it took me 6 wks to get my medical records. Second I call and it takes days for the nurse not doctor to call me back. I have been waiting for my appointment for my first cardio. appt. to be mailed to me for 5 wks. I called to day and no one new what I was talking about nothing had been scheduled by arythmmia clinic. I explained my symptoms were worse. I can now feel my heart beating in my eyes and neck actually in just about every part of my body from the waist up just about all the time. I have cut back most everything and just about lay around all day. At least for the last few days and I feel worse now after resting. I am so tired. I know something has changed and I am getting worse. No one seems to care at least at the teaching hospital because it is free care. I know your frustration, we just want to be fixed we didnt ask for these problems and who cares who pays for the bill so long as it gets paid. That though my dear is the difference between a greedy person and someone that loves others and sees their patients as God's children and treats others as they want to be treated. Just remember to pray keep faith and continue to seek another doctor. That is what I am doing to relieve the frustration. Keep us posted

April

 

[Harrybaby666]

Hi There April

Hi There April

Hi April,

I am sure glad that it's not just me that is going through this...what a mess. I am absolutely disgusted with the difference in treatment that some people get while others are indirectly told to put up or shut up..I know this sounds rude, but in this horrible section of NH, this seems to be the going saying to those who are on medicaid or underinsured. I feel the same way you do...it's MY body....Not theirs. I feel as I have the right to have informed decisions about what is going to affect me and not them..Please keep me posted on how you are doing as I hope things get alot better for you. Take Care, Harrybaby

 

[Kevin M]

It's tough to have to deal with all that stuff when you are not feeling well. It's no wonder we get frustrated. In addition to the physical problem, that increased stress level probably aggrevates the condition further.

Remember. Good days and bad days. Not every day will be good, but you rarely will have a whole bunch of low energy high stress bad days in a row. If you are, then you need to find a way to relax yourself.

I remember the bags under the eyes, the cold extremities, the frightening palipitations, waking up not breathing..... shiver. All the while not being able to properly express to family, co-workers and friends how I felt.

Try to stay positive. A good attitude will carry you far, even though it feels impossible to achieve sometimes.
Kev

 

[Harrybaby666]

Hi Kevin

Hi Kevin

Hi Kevin,

I know how you feel about not being able to communicate to people about what is going wrong. I have a friend who keeps trying to get me to give up and just accept whatever the doctor has/has not told me, but I feel that It's My body, I have every right to persue the medical issues until I get a definitive answer. I will tell you that I really feel let down by my cardiologist, and I will be seeing a new one in February and I hope things will be better then. As for the bags under the eyes, I definitely have enough luggage under my eyes to put gucci to shame, and from the way you have sounded in your writing, it seems as if we have (or in your case had) alot of the same symptoms. I will tell you that its hard getting through the rough days, especially when you have just slept 16 hours and get up and want to go right back to bed 3 or 4 hours later. Thanks for your advice and encouragement. Harrybaby666

 

[Herb M]

Have you started a new medication in the past few weeks? It is not uncommon for a medication that is supposed to help actually makes a condition worse. I have had that experience.