Feeling lost and unheard

[LoriSue]

Hello, I am a new member. I am spending another somewhat sleepless night surfing the net looking for direction. I was diagnosed with a Bicuspid Aortic Valve apprx. 18 months ago. I have been taking digoxin since last March. I felt pretty good up until about 6 months ago. I seem to be steadily going downhill. Every day seems harder than the previous day. I am 40 years old and it feels like my doctor (general practioner) is treating me like I am 5 years old. Today when he returned my phone call he seemed to imply that stress was causing my dizziness, shortness of breath, and inspiring my naps that seem to occur about every 5-6 hours lately. It feels like he isn't taking my symptoms seriously. I am not an expert on Bicuspid Aortic Valves but have watched my grandmother, aunt, and mother all go through the symptoms and surgery the last 20 years.
I want my life back but I know that won't happen until a doctor will listen to me. I can't even go out to feed my horses in the morning any more because it is too much for me, my fiance has to do it for me. I am a very independant, take charge woman and this is driving me crazy. Has anyone else had difficulty with the doctor taking you seriously? All I want is a referral so that I can get a proper evaluation. I have had my Doppler echo 1 1/2 years ago but I feel so crappy now and the doctor is telling me it is because I am 40 not 20 anymore. This doesn't sound right to me, does it to you?

Lori

 

[MarkU]

Find another doctor for a second opinion. Do it now. If your current doctor has a problem with it, then it just confirms that you need to make a change. It's your life.

I went too long writing my symptoms (chronic fatigue, SOB) off to other causes like work, stress, travel, etc. and ended up with some enlargement as my heart tried to compensate for my bad valve. I was 47, but I felt like I was 90. My life was miserable.

When I finally went to see my PCP, he listened to my heart for about twenty seconds and then told me to get to my cardioloigist ASAP. Had my AVR two days later.

Now I'm 50 and I feel like I'm 30 (my wife says I act like I'm 12...)


Mark

 

[hensylee]

Bless your heart, you are suffering. And you are a take charge person. Please take charge, decide you WANT to live a good life - and FIND ANOTHER DOCTOR - one who is sympathetic and will listen to you. There is a large group right here who will support you and give you information as to how you can get things pushed on. There isn't any point in going through an awful life if there is help to be had, and in your case, there probably is.

You have come to a good spot where so many have/are going through what you are. We listen and we support. Please hang with us and get the info you need.

My prayers for you.

 

[bethanne]

Lori,
I'm not understanding why you need a referral to a cardio if you already have a diagnosis of bi-cuspid aoritic valve. With that diagnosis you should already be under the care of a cardio with regular checkups. I am not familiar with HMO plans.

My diagnosis was made 7 years ago. I too am fairly new to the site and feel much bolder and more confident from what I have learned here. My cardiologoist is going to meet the new me with my checkup on Wednesday.

I too have had a slow progression of symptoms and weight gain as I am more and more inactive. Finally, I had a melt down with my family about 6 weeks ago. I just cannot keep up with my job, housework, cooking versus eating out and my kids activities and church commitments anymore. I tried a more regular exercise routine to loose weight and I didn't have enough energy to get through my day.

My cardio in the past has said your fatigue is not related to your heart you should explore your symptoms somewhere else. Which I have done and my gyn and my pcp say you need to talk to your cardiologist. Maybe with my newfound confidence he(cardio) will take me more seriously. This time my husband is coming with me and is going to vouch for my fatigue issues. He even went to my echo appt last week and that was an eye opener for him.

Good luck and you on the right path by getting educated. also you can expand the search for posts here at the bottom of the page. There is lots of good information here....

 

[Guest]

Lori, it's time to move on to another doctor who really wants to listen to you and treat you. Given your family history (with heart valve issues, I'm assuming) your doctor should be much more aggressive in your treatment.

Telling you that you're feeling yucky just because you're growing older is full of crap!

We are all here for you. Get to a good cardiologist and keep us posted as to what you find out.

 

[Jean]

Lori,

Those ahead of me are right! Get a new doctor!

Your symptoms are not your age! I was 36 when my bicuspid valve was first found. The doctor told me to watch for sob, tiredness, etc. But you do get older and I put way too much faith in the "I'm getting older" until it really hit me in July 2000 when I had a meltdown.

My family doctor still kept throwing inhalers at me saying it was my asthma acting up. Nothing worked and some made my symptoms worse. I finally told him I either had lung cancer or my valve was shot. I demanded the name of the best cardiologist he could recommend. He first ordered an echo. That was on a Thursday morning. He called me that evening and told me I had an early morning appointment with a cardiologist and apologized to me for not being more aggressive with the valve. To make a longish story short, the cardio gave me some meds for the water and my heart ... I was in congestive heart failure. I had my surgery with a homograft at the Cleveland Clinic and have felt better AND YOUNGER ever since!

Please don't wait ... seek another doctor or get tough with your present one. Good luck and God bless!

 

[Kathy]

Lori,

The only symptom that I noticed prior to mitral valve repair was fatigue, which I attributed to menopause. My GP sent me for an echogram in July 2002 and told me in August that I would need surgery in the future, but did not need to see a cardiologist for a year. I saw a cardiologist in June of 2003 and had surgery July 9.
I now have a new GP!

You didn't mention if you have ever seen a cardiologist, but I assume that one gave you your original diagnosis.

I'm glad that your husband is going with you to the appointment. I NEVER thought that I would want my husband along in a doctor's office. (It reminds me of the days when my mom took me to the pediatrician.) However, I found the whole "heart patient experience" very overwhelming and it really helped to have another brain in the room to take in what the doctor was saying and ask questions.

 

[dbbrooks]

Ditto....on the cardiologist consult, and I wouldn't stand for any two month wait for an appointment which is sometimes the case with the better cardiologists for new patients. Don't be stalled by the person that makes appointments for the doc. Your current doctor should pull strings to get you seen NOW. Until you know what you are actually working with that kind of time is luxury you can't afford. A cardiologist's work-up might even indicate another problem, but the heart/valve situation should be defined pronto.

Now get on the phone.

 

[epstns]

Hi Lori, and welcome to The Waiting Room. There are many of us out here in situations similar to yours. We are aware that the future holds valve surgery for us, but we are in various stages of our conditions, and have varying levels of knowledge of when the surgery will be needed. I went through some of the same frustrations you have. I finally "fired" my first cardio because he was treating me as if I was 80 years old (I'm "only" 56), and he attributed my aortic stenosis to senescence (old age). That, to me, wasn't good enough -- especially because he had all the personality of a fireplug (and I no longer had a dog to whiz on him). Finally we had an argument over hypertension, and I just canceled my next appointment. I did a web search for cardiologists in my locale, and found one at a better hospital, in a cardiac practice group that has its own facilities, echo techs, etc. In addition, I chose a doc who has a specialty in valve disorders. He did a re-exam, echo, etc. and concluded that I, too, have a bicuspid valve and should be treated as a 50-something guy with moderate AS. Much nicer doc to work with, and all is being watched very much more carefully. I guess my point is that the doc can make a huge difference -- so don't feel bad about making the change. Just go ahead and do it (unless your insurance is the problem, then maybe call them and ask for other recommendations as you are not satisfied with the current level of care). Remember that we are the patient, and patient here is another form of customer -- and we are entitiled to have our wishes as part of the plan.

Keep us posted, and again welcome.

 

[Nancy]

Hi Lori-

Welcome to the site.

Now, first of all. Your health and who you get to help you with it are in YOUR hands. If you are being treated shabbily by one person, move on to another. No one can take advantage of you unless you give them permission.

You are not some kind of nut. You have a heart condition and you need to be seen by a cardiologist. So INSIST on getting an appt. with one. Don't just accept what this person has said to you. You need help! And not only that, but you need it NOW.

So don't waste any more time. Call your doctor today and insist on getting the referral you need. And by the way, make some inquiries before you call your PCP and find out who the very best cardiologist is in your referral list and call them and see if there is a possibility of an opening for you, before you request your referral, so you will have a doctor of your own choosing whose name you can give to your current doctor.

This is your LIFE and you need help, you need help, you need help. Oh, did I say, you need help?

Wishing you all the best.

 

[Karlynn]

Lori,
Welcome!

I was first treated by an internist for symptoms related to my mitral valve prolapse. When I started having more problems, he dismissed me out of hand as an hysterical woman being a hypochondriac. 4 years later, when I had my valve replace, I asked the surgeon to send what was left of my mitral valve to that internist - just so he could see what was "all in my head". Get a cardiologist. You are having classic symptoms that shouldn't be ignored. It's hard to believe in this day and age that doctors are still treating women as if they are whining, crying babies blowing things out of proportion.

Just about everyone on this site has had some experience with a doctor that doesn't know "jack" about what he's supposed to be treating us for, but tries to make you think he does. We've all come to realize that we must be our own best health advocates and vigorously seek out qualified medical help. Doctors aren't God and one is not just as good as the next. If your car kept having trouble, you probably wouldn't take it back to the mechanic that told you nothing was wrong.

You are already gaining control of your medical treatment by searching the web and joining this group. Keep up the good work and don't question yourself when your thoughts are telling you that you need a new doctor - because you do.

Best wishes.

 

[ALCapshaw2]

Lori,

You have the classic symptoms of valve disease.

As everyone else has said, GET a NEW DOCTOR.

You can probably make your own appointment with a CARDIOLOGIST. INSIST on getting in ASAP and tell the scheduler you were diagnosed with a Bicuspid Valve 18 months ago and are having serious symptoms that need to be evaluated and treated ASAP. If that doesn't work, you may even want go to an ER when your symptoms are 'acting up'.

Leaving Valve disease untreated incurs several risks.
You may be retaining excess fluid and going into Congestive Heart Failure (CHF) which makes your heart have to work harder.
When your heart has to work harder, it can enlarge which if untreated may become a PERMANENT problem. If a valve closes over, you are at risk for SUDDEN DEATH.

For ALL of the above reasons you need to be seen by a CARDIOLOGIST ASAP. If your PCP won't get you in, take the bull by the horns and start calling Cardiologists directly.

'AL'

 

[Creed3]

Hi Lori

Hi Lori

I agree with what everyone else has said. You need to find yourself a new pcp and also a cardiologist. I think you need to do this asap. You can always start with the pcp you have now and demand a referral to a cardio as well as some help to get in to see a cardio right away. If he doesn't help you, find a new pcp. It is so very important to find a doctor who will take you seriously. It took me three attempts until I found a doctor who would listen to me. It turned out I had to be flown to Cleveland for surgery right away. If you can't get into see a doctor, go straight to the ER. You need to be aggressive regarding your care. I wish you all the best.

Take Care!
Gail

 

[tommy]

Lori Sue,

Your head is telling you all of the information that you need to know ...... family history .... your own infirmity. You need to get your feet moving into a cardiologist's office pronto.

In the meantime, if you have dizziness or shortness of breath, go to the emergency room. Don't hesitate.

After you get your immediate heart issues on track, I suggest that you find another doctor. Your body health can't afford to have to pursuade a doctor to listen. And your mental health can't afford the lack of confidence.

We will be thinking of you and praying for answers. You can get your life back. Hope it happens soon.

 

[Raverlaw]

Lori,

Ditto, ditto, ditto!!

Nancy, Karlyn and Al all know whereof they speak.

You should definitely be under the care of a cardiologist at this point. You can research who the best in your area is, and look for anyone who specializes in valve disease. If your PCP won't refer you to the one you want, get on the phone, report your prior diagnosis and symptoms, and get an appointment.

Please don't wait on this. You deserve much better care than you're getting.

 

[Bryan B]

Hi Lori and welcome.

Well let me just tell you...sorry, that's the first thing that came to my head after reading your post...it really hit home and it really pissed me off!

I have been sick since June of 2003 with bronchitis, prostatitis, and a couple of diagnoses I just chuckle at in retrospect. It turns out that I had endocarditis and it was finally diagnosed in late October. After going through 7 weeks of IV antibiotics and another echo to confirm the vegetation was gone my PCP declared that I was "cured". I told him that even though I felt better than I did before the endocarditis, I was still feeling fatigued and SOB. I do have a history of anxiety so he started me on Lexapro and changed my Xanax from PRN to scheduled. I went back to see him again with the same complaints so he increased my Lexapro. I insisted on a cardiology consult (hadn't seen one even during the endocarditis) and although he wasn't happy he complied and made one for me. About the 2nd sentence out of the cardio's mouth was that I needed surgery. Two hours later a surgeon confirmed it.

To sum up, my PCP decided that since I was suffering from axiety that all my symptoms were related to anxiety...even though I later found out that my follow up echo showed increased LV size, moderate aortic regurg and calcified leaflet, and my tricuspid showed moderate regurg when it had not shown any previously. The thing is I like my PCP. When I first found him I was very sick and he did a great job...and has a great bedside manner. Personally, I think there was a bit of guilt/worry about how long it took him to discover my endocarditis, so we had a little patient to doctor talk, got some things "aired out", and I will continue to see him as long as he takes my symptoms and what I have to say about them seriously.

To top off my lovely experience, my employer decided that my anxiety was the problem as well and told me to "suck it up". They were unapologetic when they found out that the endocarditis had indeed "left it's mark" and I needed surgery. As a matter of fact, they have ridden my ass non-stop during the entire time I have been waiting for surgery.

Please don't let others tell you how you are feeling or should feel. If this doctor won't listen to you, find one who will. I could tell the difference between the fatigue and SOB I was experiencing now compared to when I had anxiety. It sounds to me like your symptoms are real and are increasing with time. You need to EXPEDITE this matter NOW!

Sorry Lori (and everyone else), Lori's post really struck a nerve in me and I just needed to get that off my chest...lol! I feel better now.

 

[Georgia]

Lori, just checking in to let you know there are many of us out here. All that can be said has now been said: run, don't walk to another physician.

Pretty funny about all of us hysterical females and asthmatics, huh? If you read some old threads on this site you'll see the same theme over and over; and the worst part is the only thing that ever happens to the inept and negligent pcp's is that we leave them - thereby giving them less work and one less very ill patient. There oughta be something more we could do!

Hang in there, ask all the questions you want, and first and foremost, take care of yourself.

 

[LoriSue]

Wow

Wow

Wow, you guys are great! I really needed to hear those things from someone right now. I actually starting having episodes of low blood pressure, arrythmia and occasional syncope about 4 years ago before I was diagnosed. With a lot of fighting with my PCP he started me on atenolol which I took for the next 2 years. When my mother was diagnosed with the Bicuspid Valve around that time her cardiologist told her that if she had any female children that they should be checked since her mother and aunt both had already had AVR. I called my PCP and fought to have it done. When my PCP eventually sent me for an echo and got the results, I asked if that could be the reason when the atenolol wasn't really helping me anymore. He told me he wasn't sure what was going on. I switched doctors. I started going to a PCP that knows my mother, thinking that he would be right on top of the progression of the Valve and he took me off the atenolol and switched me to digoxin. It worked well for about a year. I felt better than I had previously. Now, the last six months I am feeling worse everyday and my repeated visits with my PCP have resulted in him telling me that I am too stressed (not true).
I guess I have a hard time sticking up for myself when it comes to medical issues but I think I need to learn that skill pretty quick. I have so many different emotions swirling around in my head right now it is hard to keep them straight. One thing that probably doesn't help is going through the AVR with 3 other close family members gives me a unique insight on the surgery and recovery itself. I was scared to death when I took care of my mom last year after her AVR. She was a horrible patient and gave me a horrible time. I saw first hand what one can experience when recovering. I vowed that I wasn't going through that. LOL. I am stubborn, but I am not stupid. I know I have to take care of it, I am only functional for about 5-6 hours at a time before I need to lay down and sleep.

Thank you so much for all your support! It helps immensely to talk to someone outside of the family because everyone in this family has a different opinion and each one is an "expert". LOL.

God Bless each and every one of you and your families.
I am off to the doctor's office. I don't have an appointment but I am not leaving there until he sees me....even if it takes all day.

Lori

 

[Nancy]

Hi Lori-

Just keep remembering that your mother's experience will be quite different than yours in regard to surgery, if that is necessary. Everyone is individual in how they feel and how they cope.

We'll do our best to get you prepared so that things don't surprise you. Even though you took care of your mother during her recovery and you know a great deal of what to expect, there's always great things to learn everyday on this site. It's my greatest source of information, and has helped me to help my husband through some very difficult times.

 

[Lisa]

Lori Sue

Lori Sue

I echo the sentiments of everyone else here. Change doctors. It's not in your head and it's not happening because you're 40. Your symptoms sound a lot like mine and I'm scheduled to have aortic valve replacement on March 19. And it's only been in the last 6 months or so that I've experienced any of the 'classic symptoms.'
I'm tired all the time. It started getting really bad this past Nov-Dec and I just knew it was time before I even had my appt. in January. I have gained 10 lbs. since the beginning of the year and the only thing that has changed is my activity level. Read: now completely sedentary.

Be kind to yourself and get it checked out. The sooner something is done then the sooner you'll be on the way to recovery and a better quality of life.