So TIRED!!!!!!!!

[Abbanabba]

How tired is "normal" prior to surgery?

Having gone from being quite an active person, over the last 2 yrs I have degenerated to the point were I am now on "disability" because I can't handle even a desk job. I just feel so exhausted ALL the time and even all my bones and muscles ache (..although I suspect that may also be because I just don't have the energy to use them much anymore..).

When I saw my surgeon in September, he advised me to take vigorous exercise at least 3 times a week, but honestly, I can barely muster the engery to get out of bed some days. I had also taken part in a fitness program at work (..which finished just before my chat with the surgeon..) and while everyone else was commenting on how much better they were feeling and how much more energy they had, I was finding the more I did the worse I felt (..and would subsequently feel even MORE lethargic the following day..). Part of the reason I took part in this program was to satisfy my own curiosity and see if it would have beneficial effects or not.

I know the surgeon was probably trying to ensure I would be in the best physical health when it came time for my OH, but I don't think he truly appreciated just how exhausted any sort of physical activity is making me.

Anyhoo, I guess I just wanted to know where I sit on that "great sliding scale" and maybe get some reassurance that once the new part is installed, I will (..in time..) be back to my old self.

Cheers
Anna : )

 

[Ross]

Anna it all sounds so familiar. Everything you mention are classic symptoms of heart problems. I was pretty much like you now. Once things are taken care of and you allow time for recovery, you should feel a whole lot better. Part of your problems at the moment can be some depression. You may not feel depressed, but you have a lot on your plate and it sure wouldn't amaze me any if you were.

If it should get worse then it already is, you may want to discuss it with your Doctor. Hopefully, you be all fixed up soon and this will all fall to the wayside.

 

[catwoman]

Anna:

You sound like me before surgery. When is your surgery scheduled?

 

[sylviayasgur]

hi anna!
welcome to this wonderful site. everyone here is so supportive, helpful and just understands.
about how you are feeling, a few months before my husband, joey, had his surgery, he could barley walk up the stairs to our bedroom without stopping to catch his breath. his exercise routine was dwindling.
all of what you say you feel sounds very familiar to me.
please rest assured that you will feel so much better after the surgery (just remember that you must be patient and initially you might feel worse! as you heal you will gain strength and really feel the difference in time).
when is your surgery scheduled for?
please keep us posted.
be well, sylvia

 

[LDS4EVER]

I KNOW HOW YOU FEEL

I KNOW HOW YOU FEEL

ANNA hi im chris .I had my ARV 3yrs ago and since then have gotten on disablity I get tired easier not as much engery its normal to feel this way however each of us is different I dont exersise as much as i should and im over weight and 47 you just take your time for gettting back to your ole self there is no time limit you ll have good days bad days take care hon were here for you chris

 

[Kathy]

Anna,

I was very tired before my surgery. When the doctor asked me how long I had been tired, I couldn't really answer. However, when I gave it more thought I recalled that I would lie down after a mile on the treadmill about 10 months before surgery.

I attributed much of it to age and hormones. I refused to succomb to the tiredness. I didn't take off a day of work all year. I look back now and think, "WHAT A NUT!"

 

[Harrybaby666]

I Know Just How You Feel!

I Know Just How You Feel!

Hi There Abbanabba,

I just read your post and wanted to let you know that I am going through the exact same thing you are right now....Take today for instance. I went to bed at Midnight the night before, and I didn't wake up until 1:30 pm this afternoon. I have also tried to explain just how tired I am all the time to the cardiologist, but he doesn't seem to listen. The part I hate the most about all of this is that I don't even know when or if they are going to do anything about my heart, and that in itself is terrifying!! My guess is that even if you get a full 8 hours sleep that you still feel wiped out. Am I right? Just keep being persistant with your doc, and if he still doesn't listen, maybe it will be time to find a new cardiologist. I am getting a second opinion, because I am just not happy with my cardiologist. I hope this moral support will give you strength, and I hope all goes well for you. If you would like to or need support, you can email me at [email protected] or pm me through this website. Take Care. Harrybaby666

 

[Davidcv67]

I am tired also...I'm 39 and feel 69. It hits me in the evenings after a day in the office. But I am so achy all the time....I used to exercise all the time and felt fantastic! Now with a dissection looming and the St Judes valve I can't do what I used to and I can feel the difference.

Are you officailly on disability? SS or LTD at work?

Dave

 

[MarciaB]

Anna,

I had the same question before surgery. For a while, exercise (walking) did make me feel better. But as time went on I couldn't make myself do it. I was also tired all the time, and I was really white in the face. I also noticed a time lapse of serveral hours to a day after doing something. Now that I am one month post surgery, I wonder how I did the things I was doing pre-surgery. Shear force of momentum, I think.

That last nine months I kept wondering, how bad am I supposed to feel before they will recommend surgery? My echos and the treadmill tests turned out not to be telling the whole story. When we finally did a cath with exercise (hand weights) it was discovered that my valve (mitral) was pretty good at rest, but as soon as I started moving around it got really sloppy. I was going in and out of CHF all day long. I had been telling my cardio for a long time that I could do it, but I paid later. He didn't know what to make of that until after the cath. I also became a master at moving as little as possible, even not smiling.

My feeling is that if you can't do a desk job, you are past due for surgery. If your cardio won't recommend it, find another one. Now.

Marcia

 

[R0Y]

Anna,

If you read enough posts here, you'll see that there is no "normal" fatigue level. It all depends on the individual condition. You'll see strong agreement that when your condition changes, it's time to consult your cardiologist. Your message suggests that you last spoke with the surgeon in September. The extent of the change you report calls for another consultation.

I went 30 years with a stable mitral valve prolapse that caused no problems and imposed no restructions. Then, in a matter of days, I developed heart failure that necessitated surgery. Like you, I recognized the change because of changes in my exercise tolerance. When I saw the surgeon he wanted to keep me in the hospital and perform the surgery the next day. It didn't really hit me at the time, but thinking back on that now it's both amazing (that he had an opening) and very scary (that he felt the situation was so urgent.)

Wishing you all the best in this new year.

-- roy --

 

[Abbanabba]

Thanks so much to everyone for your responses. There were a few questions asked that I'll try to answer and a few points I'd like to add:

I was originally going to go in for surgery Nov 03, but after the pre-op tests (MRI, echo, etc..) my surgeon felt that I could hold off on surgery for a while longer, even though I am quite symptomatic (..and I'm prepared to accept that this can be quite a "relative" thing; having gone from being very active, the change is much more noticable than had I been a couch potato all my life - if that makes sense..). I will be seeing my cardio in February and will try to schedule surgery for May/June, once the weather starts to cool down a little. I have enough of a time coping with the heat, let alone trying to recover from OHS on top of it (..does anyone else suffer really badly in the heat??..).

My cardio has been very good through all of this, but because of my location, I have very limited resources and there are no cardios in Western Australia who specialise in adults with congenital heart defects (..at least, not that I am aware of..), so those of us who see this guy are kind of his "research material". Having said that, however, he has been very thorough in looking into my medical history and is fantastic at talking me through everything. I have written a huge list of questions for him and would welcome any suggestions for questions I should add.

In so far as my energy decline, this was very gradual and in the beginning I actually checked out a bunch of other things (blood iron levels, thyroid, white cell count...) before heading to the cardio (..having no idea that a valve replacement would be required!!..). I was lucky to be working as a temp, so I had some control over my workload, but when it was taking me 4 days to recover from 3 days work (..albeit 11hr days..), I made the decision to go onto disability. I don't know how this works in the States, but over here you need a medical certificate from your doctor advising you won't be fit to work for a period of up to 3 months (..after which you need a new medical certificate..). My GP has been wonderful in this regard and I didn't have any problems - although I created some problems at the welfare office because my condition is congenital, but the symptoms are "temporary" and according to their forms the two just don't go together (..don't you just hate not fitting into those nice little government boxes - heh heh heh..).

The hardest thing about feeling so zonked all the time, is people look at me and see a relatively fit and healthy looking person and can't understand why I'm always sleeping in and sitting things out. Although most people know I've got a "heart condition", I still feel like they think I'm just lazy a lot of the time (..those little "oh - good afternoon!" type comments when I sleep in past 11am..). It doesn't help that I've had chronic insomnia most of my life either and they don't realise many nights I don't get to sleep before 2am... so I'm still only getting 7-9hrs a night (..which for me is amazing since I've been used to surviving on 4-5hrs most of my life..).

Anyway, it's nice to know I'm not some kind of freak and this is all part of the fun! At this stage I'm kind of looking forward to having the surgery done so I can get on with getting back to life - although I've promised myself I will use this time off to get stuck into writing those books I've got squirreled away in my head and maybe some more artwork. See - always a silver lining.

Thanks for listening to my prattle and I promise not to be so long-winded in all my posts.

Cheers
Anna : )

 

[Harrybaby666]

Hi Anna!!

Hi Anna!!

Hi Anna,

I just wanted to re assure you that you are not alone in the feeling that people "perceive" you to be in great health just because your illnesses are not visible all the time. Believe me, I am only 37, and I fight with this day in and day out, and I agree with you completely that it's frustrating to have to put up with this kind of (Excuse the term for lack of any other avaliable) ignorance about what is really not his or her judgement to make. It's taken me awhile, but now I just block out as much of the derogatory comments about my health as I can, knowing the fact that I am the one that has to contend with them, and not the other person(s). Meanwhile, Stay Strong, and as I have said, if you need someone to vent to, I posted my eamail. Take Care, Harrybaby666

 

[Karlynn]

Anna,
I'm not a big woman's libber, but I've been to enough doctors, and had a heart issue for long enough now to know that the mere fact that we are women with health issues is a big reason people don't take us seriously. I had 2 doctors at the begining of my problems tell me my physical complaints were due to "hysteria" - which would have made me laugh if I hadn't been so upset. I had a baby and a toddler, I tried to tell them I didn't have time to think about myself, let alone be hysterical. I knew people (fortunately not my family or closest friends) who honestly didn't believe my mitral valve prolapse and the symptoms I was having, were any big deal until they found out I had open heart surgery to replace the valve. I can't tell you how many people said to me "Boy, I had no idea your heart thing was that serious." I felt like responding "So in other words, you chalked up the fact that I lay on the couch for a year to me just being lazy." I found that even those that believed I was feeling badly, often wondered if I was really feeling at badly as I was acting.

It's an anoying issue, but it's also a life threatening one to be a woman and not have your health issues taken seriously. This is one of the reasons why a bigger percentage of women who have heart attacks die from them, than men. (The other is that heart attacks in women have different symptoms than men in many instances.)

This isn't just a male doctor issue. There was a study not too long ago here in the US that said that women doctors were just as likely to dismiss a woman's complaints as male doctors. You just have to love that!

The moral of this story - when you find a good doctor that listens, hang on to them!

Hang in there, you will feel better soon.

Karlynn

 

[Granbonny]

Anna

Anna

When you see your Cardiologist in Feb...INSIST on the earliest surgery date. You do have A/C in your house? You will be in there for first 2 weeks..Then venture outside in yard..for a little walk everyday. Do you have Public building with a/c..where you can go and walk. Like a mall?, ect. anywhere. Walking is the best exercise you can do after 2 weeks at home... Yes, Georgia is hot too in the summer months. I'm sure you can find a cool spot somewhere..for first few months. Don't wait...Do you have family, friends..to help you? You will need someone with you first few weeks..Good Luck. Bonnie

 

[Abbanabba]

Bonnie -
I'm still trying to sort out where I will be staying post-op, as I live 6hrs from where I will be having the surgery (..the doctors want me to stay close by so they can do post-op follow-up..). My biggest hurdle is having someone who can be around during the day in those first couple of weeks - unfortunately I don't have much in the way of family I can rely on, and all my good friends either live interestate or work full-time. I'm considering booking into a hotel over that time and there's a government scheme that offers help with that - I just have to see if I qualify.

Karlynn -
I know what you mean about doctors!! When I was trying to figure out why I was feeling so "bleargh" I was told I was depressed (..although how this has such a drastic effect on exercise tolerance, I don't know!..). When I asked for my thyroid to be checked, the doc just looked at me and said "you don't look like you have thyroid problems." - I had to tell him that my family has quite a history of thyroid issues and although I'm not overweight, there were plenty of other symptoms present to validate having it checked out - if nothing more than to exclude it as a cause. Fortunately (??) that wasn't the problem, but I just hate being treated like some overly-sensitive, depressed, hyperchondriac with nothing better to do than make up stories to waste the doctor's valuable time! I'm so glad I've now managed to find a GP who is both sensitive and pro-active.

A : )

 

[Nancy]

Hi Anna-

Exhaustion, muscle weakness having no energy are all things my husband has had before all of his heart surgeries. In his younger years, he was the picture of health, and many people had a hard time believing how serious his illness was. How you look on the outside is not an indication of what's going on inside.

Unfortunately many times patients have to be very, very pushy to get the necessary care. It's sad because there are so many diagnostic tests now that can pinpoint things. But trying to get them done is quite another scenario. I think most everyone here has had to abandon their upbringing of being nice, polite and not making a fuss. I venture to say that the majority of folks here have had to become the biggest ----- (you fill in the blanks, however you want) in the world from time to time, just to keep themselves in this world.

Never feel guilty about wanting to live and wanting to have your medical problems taken care of. The means to do it is available. If no one is going to help you, then you are going to have to help get the ball rolling for yourself.

Wishing you all the best. No one can treat you poorly if you won't let them. You deserve to be treated with intelligence, respect and professionalism.

 

[Granbonny]

Australia Members

Australia Members

I know we have several members from Australia who have posted recently. Nancy, Ross, do you recall them? Maybe we could get in touch with them and have them to post e-mail to Anna.... Anna..try to stay in hotel for at least a week. After surgery..Are you 6 hours by air or car?..Remember we are here for you..Your new family Bonnie

 

[ShezaGirlie]

Hi Anna...

Hi Anna...

Welcome aboad! Yes, the hot weather bothers me too and in July and August it gets plenty hot here in South Texas -- car temp said 117 last summer.

I think when you have a heart problem that the heat will just drain your energy so much faster especially if it's hot and humid which it is here. Don't know about your area tho...are you near Perth?

 

[Abbanabba]

Bonnie -
6hrs by car, 8hrs by train. My main concern is how I will manage the drive, especially if I can't wear a seatbelt (..there's also the problem of hitting kangaroos - they're one of the biggest causes of road accidents on rural roads..). I'm going to see if I can get some financial assistance with flying, because from what I've been told, for a 1hr flight, Kalgoorlie-Perth is one of the most expensive per kilometre flights in the world!!

Would love to get some info on our Aussie members. I've already been in touch with Grant (stormrev), but haven't come across any of the others. It would be great if we could do a memeber search by location.

Cheers
Anna : )

 

[Abbanabba]

Hi Janie,

If I were to compare a map of Australia with a map of the US, Perth would probably be about the same as San Diego, and Kalgoorlie would land you somewhere east of Tuscon, AZ, just near the New Mexico border (..except it's all back-to-front, so in reality I'm north, not south, of Perth..). Fortunately there's not too much humidity here, so that's a small blessing!!

A : )