How to cope with Echo appointments and Cardiologists?

[themalteser]

As most of you know, I'm 28 years old dx with BAV and mild root dilation. Next week I got a follow up appointment with my Cardiologist, and I cannot cope, just literally can't cope! I'm not sleeping, I'm worrying..... I'm fed up......

To make it worse, my family and I purchased a new house, and we're looking to move within the next couple of weeks.... I'm already thinking I am not going to be able to move as I will be having surgery, the results are going to be terrible that they are going to keep me in hospital etc etc.... I can't beleive that my root will stay stable at 4.4, even though so many professionals told me that these things takes a very long time to progress.... but inside my stupid head, I keep thinking that it expanded to way over 5!!!!!

I'm catastrophising all this.... I also feel I'm 28 years old, and too young to be visiting cardiologists etc.... especially when they keep saying, I don't have anything to worry about.... why the heck I have to visit them each year or 6 months? I want to get on with my life and live normal..... but then they tell me, that I should carry on as normal, as there is nothing to worry about!

Please help me

 

[escargome]

OK, breathe in, breathe out, etc. Yes you do seem to have a lot on your plate, but you can get through all this. Just keep your doctor's appointments and don't dwell on the "what might happen". You see your doctor every 6 months or yearly so you and they can stay ahead of the deal. Maybe you can seek some type of professional help with stress management. It sometimes is useful to dump all our fears on someone whom we don't know and will likely never see again. In any case, take heart, we are here to support and listen to you.

 

[piglet]

Hi themalteder,
I'm so sorry you are having such a hard time. I tend to be a worry-wart so I can totally understand what you are going through. I was so used to not having to think about my health and took it completely for granted. When my heath issues arose I felt scared, isolated, confused, angry, even jealous of the healthy people. It feels like nobody gets it and I used to get angry when people would say things like "don't worry there are many worse off than you" or "at least your alive and you haven't been told you are going to die". words like these helped me not. It's normal to feel this way. All I can say is I'm there for you. Knowledge and distraction will help. I know how hard it can be to put it out of your mind, but you must try part of the time. Stress will make you feel worse. Come here and vent often!! Please and we all will try and alleve some of the fear you are understandably feeling. You are right, in a perfect world, at your age you shouldn't have to deal with these issues, it blows, CHUNKS!! that said though I feel that the fact that the doctors are keeping an eye on you is a GOOD thing and shows that they truely want what's best for your long healthy life ahead.

 

[drivetopless]

Hi, there-
I know how you feel. . .I always had more anxiety right before the echo check up, and this anxiety would make me symptomatic. Once I got the news no change, the symptoms miraculously disappeared. I waited 13 years before I needed surgery, but those checkup as important to make sure they fix you at the optimal time-- not to soon and not too late. Some thoughts that I used to talk myself off the ledge during this waiting periods. . . It could take years to progress. . . .Why worry about something you have no control over . . . . every time I get a pass on surgery is more time for the surgeon to practice on someone else. . .there has never been a better time in medical history to have this surgery if I need it. . . . I'm so lucky to be monitored frequently as many die prematurely because they don't know or don't keep an eye on it. . . . once I get the surgery my life expectancy is increased.

Good luck!

 

[Julian]

As most of you know, I'm 28 years old dx with BAV and mild root dilation. Next week I got a follow up appointment with my Cardiologist, and I cannot cope, just literally can't cope! I'm not sleeping, I'm worrying..... I'm fed up......

To make it worse, my family and I purchased a new house, and we're looking to move within the next couple of weeks.... I'm already thinking I am not going to be able to move as I will be having surgery, the results are going to be terrible that they are going to keep me in hospital etc etc.... I can't believe that my root will stay stable at 4.4, even though so many professionals told me that these things takes a very long time to progress.... but inside my stupid head, I keep thinking that it expanded to way over 5!!!!!

I'm catastrophising all this.... I also feel I'm 28 years old, and too young to be visiting cardiologists etc.... especially when they keep saying, I don't have anything to worry about.... why the heck I have to visit them each year or 6 months? I want to get on with my life and live normal..... but then they tell me, that I should carry on as normal, as there is nothing to worry about!

Please help me

My root was 4.2 and the docs replaced it since they were already in there. They didn't want to have to go in twice, my aortic valve was the real problem, I was living with bad symptoms for years before I had the surgery. I know its hard but there is no benefit in worrying about stuff that hasn't happened and may not happen in the future. If you are having real symptoms from your condition than its time to get it done, if there are no symptoms and the doctors aren't worried about doing surgery ASAP than you shouldn't be worried.

On a side note just food for thought, the stresses of buying a home, especially at a time when your concerned about your health. Yikes! Wife and kids! Responsibilities! What AM I GOING TO DO!!! OMG!!!

I don't know if you have a mortgage but do you know what the word mortgage means? It has French and Greek origins. Translated it means death-grip. No joke, look it up. I worked in the lending industry for some years, I studied basic banking practice for a bit. Banks know you have an emotional tie to your house. To them its strictly business when they lend you money but when it comes to houses they know it runs deep and people will literally kill for a house that truly isn't theirs because they have an emotional tie to it. The point I'm trying to make is, love your family and be a good provider but don't get caught up in the emotional trap of "being a homeowner". You truly never own your home, in most states you have to pay property tax for life, if you don't they take the house. If you truly do your best and do things with all your heart it will work out no matter what. Even when it seems its not working out, it will work out.

IMHO getting 15+ years in debt to buy anything is a bad idea for MOST people, its something that people in America do that truly makes no sense. Take a random survey and ask people what their plan is for paying off their house and becoming a true homeowner, most will look at you crazy. BRAINWASHED.

Sorry to change the topic, I just wanted to get your mind off of things for awhile. Hope it worked. I leave you with this: Matthew 6:25-34 if you feel led look it up. I know all the stuff your concerned with sucks now and is truly DIFFICULT but years from now it will all be worked out. Be at peace.

 

[misaacka]

Hey, themalteser. I also commiserate over the bad timing you're experiencing. No, at 28, it's not fair. My own BAV was diagnosed at 32, not too much older than you; that's when all the echos and tracking started for me. After 12 years, I moved to take a new job, and my new cardiologist did one echo and told me to come back in 5 years. Huh?! I thought that was weird . . . I mean, you track frequently not just to notice changes, but to note the rate of change so you can plan appropriately for intervention. But I was just happy to be able to forget about it, so I did, and didn't remember until, umm, eight years later (that was this summer). By then, I'd been symptomatic for several years, but I'd chalked the symptoms up to anything but my heart. Consequently, I'm having surgery on the 17th, and it feels as if it's out of the blue, but that's only because I wasn't doing my regular echos.

Maybe this will help you reframe the way you think about echos: not as an axe hanging over your head, ready to fall at any instant, but more like a wind sock at the airport, gauging direction and strength of air flow. If you and your docs are not paying attention, you WILL get walloped by a big gust at some point! If you pay attention, that won't happen. See? You're fearing the echos for exactly whay they'll help to prevent. No bad surprises! Don't be like me. Get those echos, and relax!

 

[epstns]

Malteser - I know what you mean about being the youngest person in the cardio's waiting room. I've had them ask me "Which patient are you waiting for?" And I'm 63 years old!

Hang in there. It is rough for a while, then it gets easier.

 

[themalteser]

Hi all,

Thank you so much for all your replies, it means so much for me your reassurance.

Escargome - I got an appointment with a psychologist this Thursday, hopefully he will help me on this issue, thank you for replying to my thread, Breathing in and out does relief so much stress, but sometimes it's hard when my heart is thumping away, because I'm anxious. I try to lie down on my back, and it thumps even more, so I get more anxious, and get myself in a cycle!

Piglet - Yep, you're right, makes me worse when people say things like that... I suppose, I'm being monitored and should feel secured rather than anxious.... it's funny, my wife keeps telling me to calm down, and it's better being monitored etc etc.... She tells me that so many people have so many conditions which are not being monitored for and I should relax, and she's right, but than, when she was having her smear test, she was extremely anxious about it!! I've asked her, why she's getting anxious, and she said that it's not the actual test, but it's the way the test is performed!!! Don't know whether she's lying!

Drivetopless: You're right, I suppose I'm catastrophising so much!! I've learnt a couple of days ago that 95% of our fears are never true! My cardiologist told me, as I probably said before that, it takes a very long time for it to expand, and I don't need surgery for some time, he said possibly 10 - 20 years, he also said that there is a possibility I will never need it!, but, I find this hard to believe in my Naive brain that it takes time to expand etc..... 4.4 or 4.6 is so close to 5.0cm, but when I asked this, my cardiologist told me, it's even close to normal 3.8!

Julian : You hit the nail on it's head! This mortgage is doing my nuts!, I'm worried about it constantly, and the more I get worried, the more my chest feels tight and there I go again..... Very interesting what you told me about the actual meaning of mortgage, death - grip, I never ever knew that, and I can see exactly why! we're so much in "love" with this house we're buying, that if our mortgage falls through, we will be extremely gutted! as we're planning the colour of bedrooms, furniture etc..... Thanks for this information, you helped me thinking a bit away from my next Friday's echo.... I look forward for the time when everything normalise again.... and feel peace inside me, as at the moment, I'm angry at myself, and therefore, it's making me impatient with everyone else, including my family. (Probably they get the worst of me to be honest, as I'm constantly low with them!)

Misaacka - Thank you for your kind words, true, I need to stop thinking of them as a penalty, but rather as a measure! I just wish that my cardiologist will tell me , see you next year, nothing changed!! I'm hoping hoping hoping, and I know, but Hope is men's worst enemy! Just need to relax.... I was speaking to someone at work, telling them about my condition, with the hope of having some reassurance, and she told me that I'm sooo young to be going through all this, than I tried to say, but I was born with this and 5% of the population have it, and she turned around and said, oh, it's so unlucky you're one of the 5%!!!!!!!!!! So, she throwed me deep into a state of anxiety! Some people are just awful!! As 5% is quite a lot, my cardiologist keeps reminding me that 5% have my condition to make me feel better!!! That's why I'm so scared of my next appointment

Epstns, You don't look 63 at all from your picture!!! No wonder they've asked you "which patient are you waiting for!!", How long will it stay rough for? Will this feeling ever go away ? I tried to read a bit on the bicuspid foundation website, and made me feel sick, it made me feel hopeless that patients like me, it says, even after surgery, we are not fixed.... don't know whom to believe, whether my cardiologist, telling me that my condition is nothing to worry about, as if anything, it can be fixed forever, and he mentioned some famous names... or this kind of website!!

I've waisted another day worried about Friday... another day I could have enjoyed with my family, and now it's too late, because my little children are fast asleep, and I feel awful I've waisted a day!!! Can't wait to change my state of mind completely!!!

 

[piglet]

I'm glad your feeling a bit better, it's so hard to put these fears in the back of the cupboard but keep trying. I know what you mean about the house, when we bought the one we are in now (23 years now OMG) I had it decorated the moment we decided to put in an offer. We are so silly us humans, it'd sure be nice if we could live life day to day like our dogs. It's the weekend now, why not go to the seaside or the park and watch the kids play. Buy them some inexpensive water guns and have a picnic, something along those lines. Show them Daddy still knows how to live.:thumbup: I hope you are sleeping now too. :angel:

 

[epstns]

Malteser - Mild root dilation sounds a long way from aneurysm. What was it on the bicuspid foundation web site that made you feel so hopeless? Do you know if it really applies to you?

I was diagnosed with aortic stenosis when I was in my early 50's. I learned about the possible connections between bicuspid valves and connective tissue disorders. My surgeon and cardio even instructed me to stop lifting weights, just in case I might have some enlargement of my aorta, as it was not clearly imaged on the echo's. Well, when it finally came time for surgery, we did the obligatory heart cath (they always do one for patients over 50) and lo and behold -- no enlargement of my aorta. So, all the worry turned out to be just that. Worry for no good reason. So all this time I was concerned about something that didn't have an impact. I guess my point is to be aware of things but not to focus on them unless we know they apply.

As I mentioned, I had over 9 years to know that I would require valve surgery. The first few months were pure hell. I was so afraid of it all that I would awaken during the night in full anxiety attack mode. Then I came to the realization that I would just have to get this done when the time was right. The alternative was, as they say, "Get your affairs in order." I knew that I could chicken out and not have the surgery, but that would mean a much shorter life span, and most of us don't want that. So, I just accepted my future fate and got on with life. The ensuing years were good years. Things didn't start getting rough until the last 6 months or a year, when my endurance was reduced enough that I had to admit it to others around me. By then I was emotionally committed. All there was left to do was choose the surgeon and hospital, pick the date and choose a valve. Then once I had my "plan" all I had to do was follow it. No second guessing, just do it. It didn't all turn out as I had dreamed it could, but it is still miles ahead of where I would be if I refused treatment. It is also miles ahead of where I was just before surgery, and I'm only 5.5 months into recovery. I'm truly looking forward to seeing how the rest of recovery unfolds. Life is good. Yours will be, too.

By the way. . . my avatar is an old picture. Taken just about when I joined. . . much more grey hair now.

 

[ron]

Hello Malteser,

I just wanted to throw my two cents in off something your said...

"My cardiologist told me, as I probably said before that, it takes a very long time for it to expand, and I don't need surgery for some time, he said possibly 10 - 20 years, he also said that there is a possibility I will never need it!, but, I find this hard to believe in my Naive brain that it takes time to expand etc..... 4.4 or 4.6 is so close to 5.0cm, but when I asked this, my cardiologist told me, it's even close to normal 3.8!"

I spoke to four surgeons before my recent surgery - all top notch guys. The surgeon at Cedar Sanai in Los Angeles informed me that anueryms can grow exponentially. Meaning they tend to stay at a fixed number for awhile, but then when they start to grow, they grow quickly. I have heard this point confirmed from several other people. Another surgeon informed me that they now know that anything above 3.6 is not considered normal. I was also informed that unless I do the surgery under total circulatory arrest (freezing the body) - and remove the ascending aorta - that there would always be a chance of another anuerysm growing on tope of the graft (such as in a Bentall procedure). Another surgeon informed me that anuerysm dissection (rupture) is very deadly and I would be lucky to survive it.

That was all I needed to hear. I found surgeons with very low mortality rates (less than 1%) and chose the one I like the best. I am only 1 month out of surgery, so I cannot give you any news on my long term results. But I do feel excellent, and I know that waiting absolutely sucked. Now I also had severe aortic stenosis, so I was heading for surgery anyway. Thankfully, they fixed both things while they were in there.

So that's my two cents. I don't want to steer you in one way or the other, but I do feel obliged to share the info I just learned. This is an emerging and constantly developing field of medicine....

 

[Lynlw]

Hello Malteser,

I just wanted to throw my two cents in off something your said...

"My cardiologist told me, as I probably said before that, it takes a very long time for it to expand, and I don't need surgery for some time, he said possibly 10 - 20 years, he also said that there is a possibility I will never need it!, but, I find this hard to believe in my Naive brain that it takes time to expand etc..... 4.4 or 4.6 is so close to 5.0cm, but when I asked this, my cardiologist told me, it's even close to normal 3.8!"

I spoke to four surgeons before my recent surgery - all top notch guys. The surgeon at Cedar Sanai in Los Angeles informed me that anueryms can grow exponentially. Meaning they tend to stay at a fixed number for awhile, but then when they start to grow, they grow quickly. I have heard this point confirmed from several other people. Another surgeon informed me that they now know that anything above 3.6 is not considered normal. I was also informed that unless I do the surgery under total circulatory arrest (freezing the body) - and remove the ascending aorta - that there would always be a chance of another anuerysm growing on tope of the graft (such as in a Bentall procedure). Another surgeon informed me that anuerysm dissection (rupture) is very deadly and I would be lucky to survive it.

That was all I needed to hear. I found surgeons with very low mortality rates (less than 1%) and chose the one I like the best. I am only 1 month out of surgery, so I cannot give you any news on my long term results. But I do feel excellent, and I know that waiting absolutely sucked. Now I also had severe aortic stenosis, so I was heading for surgery anyway. Thankfully, they fixed both things while they were in there.

So that's my two cents. I don't want to steer you in one way or the other, but I do feel obliged to share the info I just learned. This is an emerging and constantly developing field of medicine....

Are you talking about the Aortic Root like Maltese has, that usually is about 1cm larger than the rest of the Aorta? In males the Normals for the Root are about 3.63 to 3.91 compared to the ascending which is about 2.86

 

[themalteser]

Hi Ron and Lyn, thank you for your input. I agree with Lyn in that the aortic root is the bulge of the aorta, and it's about 1cm larger that the rest 3.63 to 3.91 is the norm, mine is 4.4 (MRI) 4.7(CT) so that is why cardiologist is referring to it as mild at the moment.

There is also the bells theory, as one cardiologist suggested to me. He told me that, just because the norm is 3.8 in say such amount of people, doesn't mean that mine won't be normal, as this could be my normal measurement of the aorta. My measurements from start to finish are as follows:

Annulus - 3.2cm
Sinus of valsalve: 4.4cm x 3.3cm
Sinotubular juntion - 3.4 cm
Mid Ascending - 3.1 cm
Upper Ascending - 2.3cm
than it goes to arch at 2.2cm
and descending around 1.9cm

I tried to draw it with a ruler, and can visualise why perhaps a cardiologist might see it as mild, as next to normal aorta is not a huge difference ..... But..... This was December last year, and since than, oh, I just don't want to know the numbers, I just pray they are the same or better!!

Epstns - Thank you for all your kind words, the whole of bicuspid foundation website really makes me feel hopeless, for example they say that 5% of bicuspid aortic valves experience dissection, or that the journey is long or creating a climate of hope for individuals and families, makes it feel that the condition is much worse, that I need some sort of hope to go through life..... Or perhaps, I'm anxious and reading the website totally the wrong way!! I don't know, but its like looking at a website for people with terminal illnesses etc, they all try to teach about hope etc..... I can't understand why there is even a foundation because of bicuspid valve..... I get mixed feelings, don't know whether it's me or not, but my cardiologist keeps reminding me that there is nothing to worry about, than i go on the internet, and they say the absolute opposite! ....... I need to learn a bit from your attitude towards all this, it makes perfect sense what you've told me, in that to accept my future fate and carry on living! You're right!, I am just fearing everything at the moment!!

Piglet, Thank you for your lovely suggestions, they make complete sense, I should always seek to spend time with my family!! what I've done today, after reading your statement is I sat down with my children and watched Cars movie (Disney) and they absolutely loved it! to be honest, I really enjoyed it as well, than we gone to the balloon fiesta here in Bristol (They fly 100s of hot air balloons and it's really nice http://www.bristolballoonfiesta.co.uk/) ..... But, I was up and down today at one point I really enjoy the time, and than I start thinking what if I can't do this again etc etc, and now I'm counting to Friday.... AGAIN!! .... Just want to push a button and stop thinking about it!!

 

[piglet]

I'm so glad to hear you took some much needed time to enjoy life, there are so many great things to enjoy! The balloon fiesta sounds wonderful!! Wouldn't it be awesome to switch worry off!! I think having a visit with a phsycologist is a great idea, it can't hurt and he/or she may have some good coping stratagies that you haven't thought of. For now keep stuffing worry in your back pocket until you have to deal with it. Have a GREAT week, talk to you soon. Chin up, that's where the sun is.

I found a link for you http://visitbristol.co.uk/site/food-and-drink/eating-out
Happy wife, Happy home

 

[themalteser]

Feel sick... 18 hours to cardiologist appointment! 14.30UK time (Friday) .... Wish it's true that 95% of our fears are never true!! Just want all to be stable!

Oh well....

 

[escargome]

hey themalteser, flash back in your mind to the wonderful time you had at the Balloon Festival with your family. Find a happy place in your mind and go there. Say how did the appt with the psychologist go. I hope you will be able to calm your fears. I'm praying that you will be stable and that you can calm your thumping heart.

 

[themalteser]

Hello Escargome, thankyou for replying to me. Yes, I need to calm down, taken half a diazepam to help me sleep tonight, it's weird but, don't know why, but when I think of happy times with my family, I feel sad, sad cause I wish I could go back that time....receiving news that we're having twins, seeing the first faces of my children, meeting my wife the first time etc etc. Sorry, I'm waffling and started to sound depressing! Had the appointment with my psychologist, which was very fruitful, went through hypotesis A and B; A being that I really have a problem, that all my fears are true and that tomorrow's outcome is terrible, whilst hypotesis B is that, yes, perhaps I do have a little issue, bit bringing all evidences to support that I have nothing to worry about, and that tomorrow is just a routine.

 

[escargome]

Well then try to stick with hypotesis B. I know sometimes sadness overcomes us. I have some times like that when my family refers to "mom is in her pit of dispair". At those times I just try to take it one second at a time. Then if I can get through that then it's one minute at a time, then on to one hour, etc. After my AVR I just said to myself "well self, you survived that, your family loves you and you have the opportunity to see life as a gift. So make the most of it. I'm sending good vibes in your direction. Keep us posted on how the cardiologist visit goes. Remember, stick with hypotesis B.

 

[piglet]

my family refers to "mom is in her pit of dispair".

that's MEAN!! Maybe if they brought you flowers or dinner you'd feel better.

 

[themalteser]

Results, and assessment:

Cadiologist said that I need to get my blood pressure right, it's high at the moment, highest reading 159/90 today. Therefore he put me on a 25mg x 2 Atenolol. I'm currently only on 1 mg. He asked me to loose weight (I'm 14st) and start proper exercise regime. He told me that aortic root my size, possibly only around 100 or less people per year dissect per year.

Echo - Aorta- same size as before, 33mm ascending pipe, 44/45mm sinus of valsalva. Aortic valve is competent 1.2m/s velocity. He said that the problem is that when you start growing older, the pipe will increase it's size, and that is when they will replace, he told me for now all I need to do is to stay cool!

EKG - Normal, incomplete Right Budle Branch Block, which he told me exisit in the majority of normal population.

He told me that I can carry on as normal. Would like to review me in 3 months time, to assess my Atenolol medication. and carry on a 6 month follow up.

So..... Blood pressure business! I try my best to slim down and get this right..... can I ask, he would like me to take 25mg twice a day, morning and evening. I like to have a drink during weekend, around a bottle of red wine whilst watching TV, do you think that this will be ok whilst on these medication ?

Thank you everyone.