7 Months post op...not the best news..not the worst

[offwego]

Hi All,

Been months since updating...

I've been feeling not quite right the past 3 months or so but didn't really notice until 3 weeks ago after walking 4 miles the next day feeling so completely wiped out I could barely walk 2 blocks.

I did not have my follow up Echo in March and that was stupid...but..

I called and saw the cardiologist and had an Echo tuesday...My bp has been high for the first time in a long time and he prescribed 160 mg Diovan, which is what i took the first time the valve was repaired to relieve some symptoms.

Well I got a message this morning from the cardiologist..."The valve is fine but the heart is a little weak, maybe as a result of years of it leaking. You are on the right medications to make the heart stronger. You will be ok but you need to see me"

I freaked out as I am just not feeling right...I am not so much short of breath like i used to get but I am tired and just dont have the right energy...and it's not 'getting older' (I'm 55)...I know i can be in better condition but inside I knew it was my heart.

I feel hotter, less energy and all that.

I will see him of course asap to find out more...I don't know about the ability for a heart to get stronger...I do know that while I am not overweight, dont smoke and do take care of myself, that I can do much more to be in better shape..and I do wonder if my couch potato lifestyle too often is in any way contributing to this...I doubt it actually as it's just a feeling that's hard to explain.

I walked 2 miles in the heat yesterday and was going to walk over the Brooklyn bridge for the first time of my life..Then I thought,,"no this is not the time to do this..it's too hot and it's a stupid idea".

Anyway, just venting here as I know some of you can relate..

any words of experience or anything is appreciated as always!

I was ready to schedule surgery next week! It would be nice not to have to do this for the third time?

 

[offwego]

Here's a million dollar question....If your heart is weaker from years of leaking ...can it get stronger? I know this might sound stupid or simplistic but years of having valve problems and knowing there is nothing that can be done other than meds or surgery has given me the feeling that it is what it is in many ways with our hearts..

would be nice to think it could be made stronger...and not even sure what else can be done if not really...i know many people live wiht less than efficient hearts...

thanks for reading.

 

[dick0236]

Anyway, just venting here as I know some of you can relate..

any words of experience or anything is appreciated as always!

I was ready to schedule surgery next week! It would be nice not to have to do this for the third time?

I think the feelings you are having are natual for folks who go thru OHS. Those feelings get to be less and less as time goes by and you become more secure in your recovery. I know how it feels when your doc says "everything is OK....but". Go see him and determine your next steps. Like he implies, your heart sugery has been successful. If you are like me, youi jump to too conclusions.....too quickly. I have also been feeling very hot and listless....but my weather....and yours, with temps above 100F, will sap the strength quickly.....and the weather we are having is NO time to test our recovery......wait till fall.

 

[Guest]

My cardio advised me to have my surgery when I did. His statement was "You can wait but your heart health will decline, even if you have the surgery then, you never get back what you lost." I have read that any type of exercise that you are able to do strengthens the heart, it's doing the right kind for you. Heart failure patients are advised this to help them with their symptoms. Ask your doctor lots of questions, if medications are necessary then you take them. Pay attention to your symptoms and how they effect you, don't hesitate to seek the medical care you need.

If you feel tired after exercising, take a day or so off, start again and then don't push as far or hard as you did on the previous session. Increase slowly as you gain strength. In answering your question about walking in the heat, heart patients tend to be more sensitive to temperature so make sure you are hydrated if you feel like going for a walk. Best of luck to you.

 

[offwego]

Thanks for the replies...Yes the hot weather doesn't help and it makes it more obvious that something's not right...

My doctor a top notch cardiologist...He knows his stuff...I had my first MV repair in 2003 and it didn't hold up ...and I saw doctors and was really left to decide if I wanted it repaired or replaced while it was being monitored...THe year before this surgery I didn't go for follow ups and finally went for one and was told I needed the surgery within a couple of weeks.

Things look encouraging in the pre op tests, not much enlargement..and as the doctor said on my voicemail...after surgery the heart was beating very strongly..

He did use the words 'a little weak'...My feeling is that hopefully medication can control it and that your doctor (Lucy) is right that I can never get back what was lost...but don't know what it might be yet anyway.

All I know is that something had to give..I've been living like an old man for a few months not knowing what's wrong...

It's so hard as everyone blames age, 'take a yoga' class...ugh..

I'll post a follow up tomorrow when I know more.

thanks again for reading.

 

[offwego]

Here's the update. The cardiologist just called and said the EF was 40% and should be around 50%..He said my high BP is not a result of the heart (I had been on Prednisone 6 weeks ago and a round of Solumedrol and took aleve 2 aleve 2x a day for 3 weeks) He is not aware of this even though I told his assistant to tell him...Perhaps that drove my pressure up? Clearly it does.

He went on to say the fact my bp CAN be high is a good sign. He repeated over and over that with careful monitoring and adjusting the medications the heart WILL improve and wihtin a year we will wean off of them if it does.

He was a dominating alpha dog to me and I am very irritated about it to be frank. I understand his time is valuable and he is very very busy...But he said to me "we both know you are a complicated guy"...I guess I'm not like most of his patients who are much older than me and he can push them around. I'm really furious how he spoke to me. wow.

I think I'll see him again next week, he'll do an EKG and we will talk a bit more...but in the future, I can't have a doctor who I fear upsetting...I mentioned to him that I NEVER call him, this was one time that I missed his calls!! He said he was leaving the office yesterday and his assistants were all telling him to call me as I was upset. He went on and on and on about how we must establish 'game rules' and I cannot be doing this.

I'm really upset at being spoken to that way. wow. I don't need drama with my doctor. I don't pride myself in being a sheep but I am always polite and considerate to him.

Anyway, it really is the best news possible.

oh, he added that we cannot definitively say that the way i am feeling is related to the EF being down and that my feeling hot overexerted and easily sweating is NOT a function of a problem with the heart. Certainly he knows more than me..I do have MS as well that is as light a case as can be..but it does make things more complicated.

 

[AgilityDog]

You are right, you should not have to fear upsetting your doctor. I suggest you begin interviewing a new one.

My EF is 40-45%, because of damage from the mitral valve (I was slow to get diagnosed because, after all, a 46 year old who runs dog agility just COULDn't have a heart problem. Riiiiiiight.) I am on carvedilol which is an alpha and beta blocker. I understand it is proven to extend longevity in people with heart failure (ummm, honey, that's you and me.) I'm also on sotalol for an arrythmia issue. My cardio would like to also put me on nitroglycerine to help my ventricles work better and more in sync, but he can't because I get migraines, and can't even take ACE inhibitors because the nitrites from both those drugs trigger migraines.
I wouldn't be surprised if your doctor (or your new doctor) wanted to adjust or change your medications, or add new ones to help the heart pump better.
Oh, and I also have problems in the heat.

 

[Bill B]

Just knowing you are in the New York area and your cardiologist is a very sharp guy, he's probably under as much stress as you are. You admit you did not do an echo earlier and that in years past you did not always do proper follow-up. Doctors hate that, rightfully so. He called after your recent echo and said you needed to see him. That to me means he was a bit keyed up by you delaying this echo and was expressing some concern that you might not comply. Then what happned is not entirely clear. You complain that he was all over you when he called again. But then you later mention that his staff told him you were "very upset" and that he needed to call you. What's that about? He called and seems to have been annoyed with you about that. You guys are having some kind of communication problem. Did you call and complain to his staff that he needed to call you? Why? He had called you already and asked that you come see him. Why not just schedule an appoinment for as soon as possible? That's what he seems to want. If he's that good, I'd just do that. Sorry if I am misunderstanding, but that is what I read.

 

[offwego]

Just knowing you are in the New York area and your cardiologist is a very sharp guy, he's probably under as much stress as you are. You admit you did not do an echo earlier and that in years past you did not always do proper follow-up. Doctors hate that, rightfully so. He called after your recent echo and said you needed to see him. That to me means he was a bit keyed up by you delaying this echo and was expressing some concern that you might not comply. Then what happned is not entirely clear. You complain that he was all over you when he called again. But then you later mention that his staff told him you were "very upset" and that he needed to call you. What's that about? He called and seems to have been annoyed with you about that. You guys are having some kind of communication problem. Did you call and complain to his staff that he needed to call you? Why? He had called you already and asked that you come see him. Why not just schedule an appoinment for as soon as possible? That's what he seems to want. If he's that good, I'd just do that. Sorry if I am misunderstanding, but that is what I read.

Yes you are misunderstanding what happened.

I'll explain. First off, I live in NJ and NYC. He was my cardiologist only for my first preop testing and followup 8 years ago. After that I continued being monitored by another cardiologist in NJ. I was diligent in all of my followups.

This doctor was not at all one bit upset that I didn't follow up with him..He didn't mention it. I forgot to mention in my first post that I did in fact follow up but with the cardiac surgeon. I was upset and forget that until today.

I moved back to NYC and went back to this doctor for a checkup and he referred me to the same cardiac surgeon's office. I met with the head of surgery and had the operation in November 2011. It went very well and I was extremely happy that the valve was able to be repaired.

I did go for several post op follow ups with the NY cardiologist.

I went back to see him last week after being exhausted and of course needed to see him anyway for a follow up echo. There was zero issue with the doctor about me not coming before this..not a word was said.

So I had the test Tuesday and I called his office for the test results. He called back and I missed his call and he left a message that I posted...and of course it was upsetting to hear 'the heart is weak'. No criticism of the doctor at all yet.

I called back as he suggested and left a message for him to call me. I took a xanax and fell back asleep and missed his call. I called back and said I really wanted to speak to the doctor and I missed his calls.

I do think he is a top notch doctor. 100% no question of that. But I have witnessed him being incredibly bombastic and nasty (only once) and he is very judgmental of me..He seems to mean well but I do threaten him..Clearly. I know it. I ask questions, I do some things he may not approve of but I am very intelligent and very well spoken and most importantly I am extremely polite and show respect at all times.

He was out of line. I don't like it. I don't have the patience or the inclination to get into personal issues with this doctor..clearly we do set each other off.

Lastly I am going to continue to see him as I do trust his judgement but I do not like much about his personality. He prescribed 80mg of Diovan...I took 160 after feeling it would be better and I have used it in the past. I told him this and he said, "I told you to take 160mg..."...When we spoke yesterday I asked him if I could double the dose and take 160 in the am and 160 in the PM. He thought that would be a good idea and to watch out for dizziness.

I'm in a bit of a tough spot as I know he is a good guy and I totally understand the stress of his job and yes this is NYC....

It's not an ego thing going on here for me. It's simple stuff really. I treat everyone with respect. I was raised that way. I am also not perfect and allowed to be freaked out after two OHS' and being diagnosed with MS.

I don't like to be brushed off and told "Heart issues do not cause sweating"... Give me a break already. A good word or words would go a very long way with me.

I am truly po'd at his doctor and I have to suck it up and accept it for now. But I am steaming.

Gotta watch that BP! Time for a....walk!

 

[offwego]

I'd rather focus on in this thread not about the doctor, it's not really important.

What is important now is that I am starting to feel a little better...I just took the second dose of 160mg Diovan and am taking good care of myself.

The doctor told me not to exercise until we have the BP down to normal..I have to take it again but it was slowly going down...144/90 this morning..I dont think my monitor is accurate and need to buy a new one.

I've never had high blood pressure and of course with my luck, I am sensitive to it...I've been feeling anxious and just awful...I learned 80% of the time people with high bp never find out the reason..

I do suspect the Prednisone from about 4-5 weeks ago didn't help...Solumedrol and Prednisone raise BP of course..in addition 2 aleve 2x a day for 3 weeks didn't help either...

It's a full time job coordinating doctors and I need to get a new primary care physician in NYC asap...The average time with a doctor is about 7 minutes I read..and experienced..It's not easy to keep it all together perfectly under the best of times..it's much harder when you are not feeling well.

 

[Jimmyjames]

have your GP do bloodwork to check your testosorone (excuse the spelling) level if low it can cause fatigue. most older males are low in there levels. It will make a big difference with the medication and how you feel.

 

[offwego]

have your GP do bloodwork to check your testosorone (excuse the spelling) level if low it can cause fatigue. most older males are low in there levels. It will make a big difference with the medication and how you feel.

Good point and agree that does need to be checked again. I am injecting 1cc Testosterone Ethanate once a week but it's been over a year since levels have been checked. I was prescribed Androgel in the past but prefer the injection.

I just came back from the cardiologist.

To begin with the Mitral Valve is working great with only trace regurgitation. As mentioned the EF is 40% which is worse than it was post surgery.

I got copies of the Echo and blood work and Red Blood count is high 6.28 (range 4.00-6.00), Hemogolbin is 19.1 (range 13.5-17), Hematocrit is 56.6 (range is 39.0-51.0) and Carbon Dioxide is 32 (range is 22-31).

The doctor wants me to repeat the test next week. He left for a trip and is gone for 10 days and I am seeing him again in two weeks.

He changed the Toprol to Coreg 12.5 mg 2x a day and said he will want to double it once I have been taking it for a little while. He wants me to stay at 160 Diovan for a bit and then increase that to 320mg.

They did an EKG while I was there.

He said that he is CERTAIN, the heart will return to normal size and that the EF will improve. He was very nice to me and considering I was late and he was catching a plane, he could not have been nicer.

He said my condition is complicated in that with the heart and with MS and who knows what else, it is impossible to say exactly what might be making me tired or not feeling right. To me that meant my guess is just about as good as anyone's and my conclusion is that I am and always have been very sensitive to how I feel and to medications and it's no surprise that with my heart functioning as it has, that I have not felt right. I have no doubt that a couple of weeks ago when I felt as if I could hardly move the next day after a 4 mile walk, that it was related to my heart and my newly discovered high blood pressure.

All in all, it is really great news. The Mitral Valve has only trace leakage...that's amazing to me as it's just about been worse than that for the past 10 years, even after my first repair surgery. The left ventricle is mildly dilated, The LV ejection fraction is mildly decreased, All words describing heart condition in Echo are mild or trace and the conclusion in the test is that overall LVEF appears to be worse. Which is clear.

Of course, I'd like to feel 'perfect' but these medications should help heart return to normal size and in a few months time, I know he will try to wean me off of them to see how I do.

This is a pretty free wake up call...I do need to take a bit more care of myself and simply at the minimum walk briskly 1/2 hour each day..

Yesterday I took out a bicycle for the first time since I can remember! was great fun on a flat road..until one big hill, didn't tackle it but it was good to get out.

thanks for reading yet another rambling post!

 

[Bina]

That does sound like a pretty good update today. At 7 mths post op it was difficult for me to do much of anything. You are okay !!

 

[offwego]

That does sound like a pretty good update today. At 7 mths post op it was difficult for me to do much of anything. You are okay !!

Thanks Bina. I don't know why exactly but I just was doing so well post op that I thought it was all smooth sailing from a couple of months out. The surgery went better than I ever hoped, much better than the first. No issues whatsoever. But at the same time after 3 monthsI didn't think much about it and yet I have not been feeling 'right' often, due to a few factors and maybe now with the Coreg and diovan, regular checkups and a bit of exercise, I'll feel as I had expected to feel.

It was a rough few days when I first felt so bad and then got news of my heart being 'a little weak'.

Seems as though things might start shaping up and I am doing my part being more active...rode a bike for the first time in a long time yesterday!

 

[offwego]

I'm actually excited at the prospect of feeling better...It's like a 'freebie' compared to OHS..lol.

The cardiologist wants me to get to 320mg Diovan and 25mg of Coreg...I am taking half that amount now...But I increased the Diovan today to 320mg (was up around there last week) as my bp was definitely too high (got a much more accurage wrist bp reader compared to the cuff one that was wildly inaccurate (and always high)..

I'm glad the doctor is so sure the heart will normalize and improve...As I've posted, he's not the type to 'sugarcoat' anything at all...He even believes I might be able to be off the bp meds after about a year...but i seem to tolerate them well enough so it is what it is..

Of course there can always be a placebo effect but after 3 days on 12.5 x 2 Coreg, there are some small but noticeable and pleasant reactions...My breaths feel just a little better, hard to explain exactly..it's not like an improvement to shortness of breath I had in the past (before surgery) but the breaths feel almost 'calmer'..

I like that he is treating this aggressively and the dosages of both meds seem to be near maximum. He's away for 10 days but I know he doesn't have a problem with me increasing (only the Diovan for now) as long as I watch out for dizzyness or other side effects..But I've been on Diovan in the past for years and I tolerate it very well.

I have been more active than usual since Thursday and as much as I wanted to go out and take pictures in Central Park today, I'm taking it easy and later going for a walk.

SOrry for the rambling post but it's 'funny' how even after two valve surgeries how I completely ignored that i was not really feeling right and figured I was as recovered as I would ever would.

I've read a few threads here about the question of getting surgery done sooner rather than later and after many appointments after the first surgery and sick of the echo tests and all that, I took a break for at least a year while I moved into the city...and I made a 'To Do' list and #1 was see my cardiologist...that was in October...I never expected him to say, "You need surgery to fix or replace your Mitral Valve".

Talk about stupid for missing appointments...but I just needed to move into NYC and get myself ready I suppose..I think deep down I knew exactly what was going on, I set up home not far rom the hospital, and after the news I needed a second surgery. I marched like a soldier to the hospital and got it done like a champ.

But I celebrated a bit too soon.

Thank god for second chances and a valuable lesson learned.

Never again.

 

[Bina]

I hear what you are saying. Sometimes our mind can try to trick us into believing some symptoms are normal when they are
definitely not. Been down that road and am trying to stay off of it.
Stay well.

 

[offwego]

It's cool having two friends who are cardiologists! Such a different experience obviously..

They both (and my doctor) all say the same thing. I'm surprised. it's def good news and they all even agree on the same meds at the same dosages. To them, there are no real heart issues and that simply and plainly it will take a few months and that I need to do aerobic exercise and the EF will improve.

The weird and sorta disappointing thing is that they all are surprised I can even feel any symptoms of a heart that is operating with a=n ejection fraction of 40%...Obviously I can't know what or why I have felt as I do...Clearly the high blood pressure is prime suspect and at this point I don't know why the blood pressure got high.

I was also surprised and a little disappointed I guess that the high readings of Red blood count, hemocrit and hemoglobin are in one opinion, not related to my heart at all.

But that might be good news too...

It could be many things including something as simple as being dehydrated or connected to the Testosterone injection I do weekly.

I'm not that worried about that and I am sticking to the meds and will increase the Coreg soon and follow doctors orders regarding exercise. this was probably the kick I needed to really take it more seriously.

 

[FixedAgain]

Boy o boy do I have an update for this thread...I can't seem to log in under my old name but I promised myself I would share this story here.

I'm still reeling from it all as you will all relate...

Here goes.

Things continued from where I left off pretty much the same...I went back for a follow up in November 2012 and nothing had changed..

I was finally accepting that this was life as it would be and it could have been worse...and I moved forward with my life but was just tired much more than ever, heat and cold sensitive, a bit short of breath and just felt 'older'..

I started to just chalk it up to just the way it is...but I lived a somewhat less active life and hibernated most of the winter..

I didn't go back to the doctor for a check up until two weeks ago...This time the echo showed an EF of 35% down from 40%..pre op it was 50%.

I got blood work and the doctor called telling me that I really have to get my testosterone checked as my blood is very thick and my Hematocrit levels, Red Blood cells and Hemoglobin were too high..Then he had to go, as he was going on vacation.

A minute later the nurse practitioner called and we went over the numbers..she said, "I don't know why he is just noticing that..they have been pretty much the same for over a year"

Well, Google is our friend right? A quick search of Hematocrit and Testosterone gave me the information I needed...ALL ALONG IT WAS MY TESTOSTERONE INJECTIONS causing all the problems!!!!!

I just knew it...and i was the world's biggest idiot to not have been on top of such a thing..Literally the worst and most dangerous mistake I have ever made...No excuse but you would think a cardiologist who orders these tests, including Testosterone would have noticed????

I was feeling absolutely ill the last few days...and believe it or not and against the nurses suggestion, I hoped in a taxi and went to the Red Cross and donated a pint of blood! This is what I read is the best and maybe only way to lower levels fast!

I felt immediately better...MUCH better!

I checked all my blood tests and saw clearly the numbers were wacked since the first blood test when I went to complain about how I was feeling.

I had the levels checked again and they dropped 3% and I donated another pint of blood..Yes I know all about the risks...yeah...anema...umm...no problem..take my iron. please!!

Just got the new results and for the first time they are ALL NORMAL.

And I feel completely different...so much better!

Of course I have an appointment with the doctor for the testosterone and he told me to immediately reduce in half..and do it 2x a week instead of one and we will test in 4 weeks.

This is such a terrible story and at the same time, the ending (so far) is that I am feeling much better.

The nurse poo poo'd me and said normally after levels dropping that fast they would have to test for some adrenal cancer or something...sorry but I had to laugh...

I will NEVER listen to a doctor again in my life..I will DISCUSS but no more listening...I hope I didn't permanently hurt my body...all other tests came back normal..but my god,,,,high levels of Red bloods cells wrecks our heart and other organs and can fuel cancer.

I know the ultimate fault is my own but I can only move forward.

I have weaned down on on the dreaded Coreg by 50% but won't stop taking it until I see the doctor and as the nurse told me that the heart will need time to remodel and very likely the ejection fraction will slowly increase.

The mental stress of all of this has been enormous...anyway..wanted to share this with everyone as a cautionary tale and also the good news that the valve is holding up in spite of the bad treatment by the owner.

Unreal.

 

[pellicle]

very interesting post. I am glad that you are now on top of the problem and looking at the right solutions.

I have often said that as the patient you must become informed and be your most vocal advocate. Rather than simply submitting to the treatment of doctors, I think that the best approach is to act as a project manager and treat them as specialist contractors. While they often know their stuff it can be impossible for them to be across every detail when they see (how many patients?) many each day.

The trick is in learning when to accept their decisions and when to qurstion more.

Personally I always question everything and evaluate the answers based on what I know. It I don't know enough then I learn what it is clear that I don't know.

Bottom line for me is that noone is as effected by my health as me, and noone considersy my health as importantly as I do

again, glad you are going in the right direction

 

[FixedAgain]

I made a new recent thread but wanted to update this thread too.

Just got the results of the Echo taken January 2nd and the Ejection Fraction increased from 35% to 51% and this was all with NO medication.

It's incredible that my cardiologist (or more accurately FORMER cardiologist) never looked closely at the results of the blood tests and rather threw medication at the problem as my symptoms at the time were confusing and he just did what he always has done in the past.

Unfortunately, I wish my new cardiologist would have seen me sooner as I have been off all meds fo 5 months...there is Severe Left atrium dilitation that scared the pants off of me but finally we spoke and we're back on the Coreg and Diovan and it's expected to shrink back to where it was to hopefully Mild or Moderate..She was very confident of this.

The other great news and end of this really terrible long two year ordeal, is the Ejection Fraction which was 51% before MV repair and down to 35% in August 2013, probably will go higher...How high, I have no idea but it will be fun to check back here in a few months after an echo and me doing regular exercise.

I'm very lucky I was able to (unfortunately) figure this one out almost all by myself...