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hilbiligrl

Ejection Fraction Of 15% ??

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Sorry I havent posted in a lil while but we keep getting bad news from my husbands doctor. He and I had an echo on the same day (week ago today) and I wasnt able to make his or mine. I always to go his. This time the said he had a leak in his aorta but they werent sure if it was the valve or in the aorta itself. Then today he got a phone call from the doc telling him they got the results of this echo and it shows that his ejection fraction is now 15% and they said it didn't look good and wanted him in with his heart specialist first thing monday morning (they called at 4 o clock on a friday to tell us this), on today's phone call they didnt mention any 'leak', just the EJ. My husband had congestive heart failure 7 years ago due to a pulmonary embolism but recovered well... his ejection fraction at that time was 11% and he was almost dead, but he responded to meds quickly and has done well for 7 years now, with ejection fractions of 45% yearly, but now its all of the sudden 15%.... he is not showing any symptoms at all. He and I are both worried and freaked out to the max that this means a certain death sentence.... and he NEVER worries... he's all to pieces, so I'm all to pieces as well. He doesn't have any medical insurance at all, and has ran his own towing business for 16 years and it's just me and him running the business.... but we are more worried that this means he may die really soon. (so now my illness had to go on the backburner for a bit.... )

Does anyone know of recovery from an ejection fraction this low? I don't know enough about it to know whether or not meds can bring something like this back up?

thanks so much,

tennille

hilbiligrl

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Gosh, Tennille-

I'm so sorry that you have received such scary news. I hope he has an appt. to see the cardiologist 1st thing on Monday??? There's a chance that the 15% EF (without symptoms) could simply be a mistake- best case scenario. If there is a structural problem in the aorta, very likely, it can be fixed. Thoracic surgeons reconstruct leaking aortas & aortic valves all of the time.

My best pal and workout partner just had her aortic valve replaced and her aorta reconstructed one month ago today. Her only symptom was a little bit of shortness of breath. It's a big scary open heart surgery, but she's recovered amazingly well.

I just want you to know that even if there is a structural problem- it most likely can be fixed. Focus on that as you try to get through this weekend. I'm sending prayers that the echo is a mistake...and if it's not- that it's an easy fix.

Gentle Hugs to you both-

Julie

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That's scary! Still a chance it was an error. He recovered from an 11% one before. I would think the only way for him to be symptom free at that # maybe was if it was a gradual occurance? Was his last echo 1 year ago. Praying for you both. Hope you get some better news at the follow up!!!

Brye

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my father in law has dilated cardiomyopathy and has a right ventricular ejection fraction of 11% (up from 5% originally!!!) and he still works, although he has to pace himself now. I agree that it could be an error for it to drop so suddenly.

Let us know how he gets on Monday.x

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I know that you are both worried about the financial aspect of this but I really think he should consider having the surgery anyway. It's worth it and he could live for many years after if he seeks treatment.

I know you are horribly upset but keep trying to take care of yourself in the mean time.

I know this is very scary when you are looking at both of you being in a health crisis and the fact that you are still raising children there.

Sending huge prayers your way.

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Hi you guys.... and thanks so much for your replies.... I appreciate them so much.

Keep in mind hubby is 56 and im 33 - together for 10 years now (if you havent read my 'about me'). About 1 year after we met and dating, he came down with gout and was bedridden for a good 3 mths... as he was bedridden, two blood clots formed and passed through the heart to the lungs causing the congestive heart failure. He was bad off but refused to go to the doc cuz he had not seen one since the very early 60s when he had rheumatic fever as a child. I finally mad him mad enough to finally go to the hospital and they admitted him to icu immediately. He's recovered well in my book, with just a few maintainance meds these 7 years.

Yes, he gets echos each year to keep up with how the heart is doing. He hadn't had one in about a year till now and he has had no symptoms, except a jabbing pain a few times in the heart area that he describes as like a muscle pinch or electric shock in the heart or around it. It's happened alot lately, maybe 3-5 times in a few months. Other than that, no shortness of breath, fatigue, or sleeping probs (he had all those on the first go around of heart failure). He doesnt have fluid in the lungs that they can tell by listening. He does keep some mild issues from me cuz he knows how sick I am and he knows I fall to pieces when he's sick or is having complications. But he called me immediately after the doc called him at work.... in 7 years the doc has NEVER called him at work, they always call me first, this time, they called him first and at work, so it's really got us scared to see the doc be so serious.

Yes, his heart doc appt is 8:00 first thing monday morning.

I am normally on top of these medical things that go wrong, but this one has us both scratching our heads and confused. His doc acted like it was really serious and said it was really serious. I've never seen hubby worry or be in a fret or be upset..... till now.

They took him off of coumadin, lanoxin and lasix about 2 and 1/2 years after the ICU incident.... he's still on coreg, lisinopril, lopid, folic acid, fish oil for the past about 5 years.

He's always has good blood test results with no high cholesterol and things like that. His blood pressure and heart rate seem to remain stable.... although i've noticed his heart rate is higher than normal.... but he just had the flu shot (which i was angry when he told me he got it as i wasnt there to say no) and the pneumonia shot at the same time 3 weeks ago at the doc's..... then he got a mild case of the flu for what has seemed like a few weeks, but is feeling much much better and back to normal now. I was upset with his doc for telling him to get both shots at the same time.... to me, that's just too much for a heart patient like him, even if he has been doing good.

thank you so much for the prayers, they mean so much

I have to go back to my new integrative doc appt on monday at 10 right after his appointment at 8.....

Mack's mom: I really think this doxepin is helping alot, i've been able to get out and about and go towing this past week. and the bedridden for me is starting to become less a little each day. Although I'm not by any means running around, as i still have to rest alot still and i still have many symptoms, but no where near as many nor bad. I've also noticed for the first time in a year and a half that i have no headache, i'ts been about a week and half and i've had only one or 2 small headaches that weren't even enough to take tylenol.... that is so weird. Can it be that the doxepin is working this good already? I haven't got to re-read much on the mcad since hubby's tests have been showing up bad this past week or so, but does mcad cause persistant headaches too?

once again, thanks so much for the thoughts and prayers

many blessings to you all,

tennille

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Hi Tennille-

Just wanted to let you know I'm sorry to hear about all the worrisome news.

Also, doxepin did start to help me quickly, particularly with the episodes I was having at night, allowing me to sleep better. I didn't notice headaches.

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Hi Tennille-

Headaches have been a part of my MCAD. Glad the doxepin is helping so much- did for me too- when I really needed it.

I'm so happy your hubby's appointment is 1st thing on Monday- you'll get some answers then. Knowing what you are up against is always worse than imaging... whatever :blink:. It is amazing what the surgeons can do now to reconstruct the entire aorta & valve. My friend, who recently had this done, was only in the hospital for THREE days. At one month out, she is walking 1.5 miles a day & feeling great.

If surgery becomes necessary, be sure to negotiate a cash price with the hospital and the thoracic surgeon beforehand. Insured folks get greatly discounted prices because we are a part of a "group." There is NO reason that you can't get the discounted rates and pay the same rate as everyone else. You won't automatically get them- unless you ask.

I can't imagine the worry you must be facing on so many fronts. May God's loving embrace shield you both. Relax for now & know this will work out.

Gentle hugs-

Julie

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Praying that you hear good news today for both you and your husbands dr appointments.

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Ditto! Let us know when you're able.

Hugs-

Julie

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Hello all.... sorry such a long lapse in posting an update on hubby and me. I have fallen deeply back into a 'potshole' or what i call 'weak spells' or 'severe episodes'. I was feeling some normalcy for once after a year and half to 2 years of being in a disabled state, until after the bad news about hubby's echo last week.... it seems the stress and worry perhaps has lashed out against me and now im back to not being able to barely move or talk or function. I have very very little memory of this week, even when i went to hubby's echo.... no memory for days and today is patchy. My cognitive ablilities were improving for the first time in a good year and half too since i started the doxepin for mcad, but now it's all to heck again. Im just in bad shape again, and so let down cuz i was starting to look up that I might have been getting better with mcad treatment.... so now i am unsure of the backlash.... is it nerves? I've always have had bad nerves since i was wee little.

Anyways, hubbys doc appt went ok. His new heart doc doesnt want to change any meds or add to them until hubby starts 'feeling' symptoms from the heart failure... he's afraid he will make things worse or make things progress faster. The heart doc also re-done his echo and also did a cat scan of his heart to deterimine if he needs surgery on the aorta. That was monday, and we still havent gotten results. My mind is so blotchy... but the new heart doc for hubby was very nice, hubby liked him and so did I. He seemed to calm us both down that although this is bad and things dont look well for hubby, that even with an ejection fraction in the teens, he could still live for quiet a while. Although he doesnt understand how his heart went from 35-45% ejection fraction to a 15 in less than a year. If it proceeds to drop that quickly, things look grim. So for now, it's a waiting game, trying to get things in order and going about living... well, he is for the moment... im stuck in the bed again worried sick about him, kids and everything in between.

I got results back from my own echo and holtor monitor as well (same heart doc group but i have a different heart doc).... echo was fine for me, only showing a small hole in the heart but nothing to worry about. Holtor monitor caught quiet a few tachycardia episodes were the heart rate was in the 140s. The nurse called yesterday and said it was due to excersise..... i specificaly wrote on my diary that i wasnt able to excersise and that the tachycardia was from just getting up, cooking, walking in the house... no straining, no nothing. Well, she didnt know what to say and basically she caught me at the wrong time and wrong frame of mind. I let her have it, I wasnt nice about it either, i didnt cuss or yell, but i really let the feelings and thoughts flow and told her to share my thoughts with my heart doc and told her to tell my heart doc she needed to learn to study up in the rare disease catagory and that she could also gain from a class or two in the compassion catagory.... and so on and so forth. Felt good and at this point, i dont feel a bit bad about being so hateful and really saying what i want to say as the nurse kept 'making excuses' for everthing i pointed out that wasnt right..... oh well. I still have vanderbilt next month.

I know there was some things i wanted to answer and respond to, but my mind is so disoriented and lost these past few days that i just really can't remember... and the fact that i can't remember so much has me even more scared and freaked out.

To sarah and macks mom and those who deal with mcad..... I've been trying so hard to see if i can sort out the symtpoms that seem to be improved from the doxepin from other symptoms. Is it possible even with mcad and the doxepin helping, that i relapse into my previous disable state? I don't even know if i asked that question right or not. I keep re-reading it but nothing is making sense to me. I was hoping the doxepin was doing the trick and I was even planning on taking over many of the business aspects of our towing business and getting back into the truck again. We were going to get me back to driving a truck and towing again at the very least, so that I will be in a better positiion to run the business if hubby goes down but now im wandering if it really is possible for me to really get better and be better.

I better stop there, cuz im prob a mumbled jumbled talking mess right now.

thanks everyone for the prayers.... hubby actually is feeling ok and not showing symptoms of heart failure.... hoping somehow the ejection fraction can improve again and that he can maintain.

many healing blessings to you all

tennille

hilbiligrl

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I think the stress can really knock us down it happened to me at the holidays partially from the stress of the holiday and hen knowing my husband would be on a business trip for 10 days.

I made it one day. After he left and that second day ended up calling 911.

I kept looking back at that sequence of events and thinking if I didn't know better it seemed as if it was a big giant behavior acting out because he was gone.

Problem is it was just out of my control.

The stress of all of it just really knocked me down and I felt inadequate to care for myself let alone my four kids.

That is ironic too because I always got very nervous and almost down right angry and resentful when he had to be away ( it's like I never felt in control ) now it's advanced to this.

It really is odd and it's hard to say if it's the same for you.

For you it's the stress of getting bad news but also real concern for the future and what your role needs to be.

You are getting hit with about a triple whammy.

Any normal healthy woman would be concerned and sick about what is going on.

This is enough I think in my own mind with what I'm seeing myself to cause a huge major setback for you.

I hope in another week or two maybe things will start improving again for you.

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ok.... scratch any good news... just got off phone with heart center... hubby has what she said is a huge anurism in his aorta... thoracic something or another and needs surgery asap.... and they said his ejection fraction is actually 20 %.... said he is at high risk for death during this surgery..... i just can't handle this.... im on the phone with the heart doc as we speak trying to find some financial help for surgery and a defibrilator.....

oh god, im so freaked out and upset.....

thanks everyone

tennille

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Oh Sweetie-

I am so sorry. Deep breath. You can do this. My brother also had a huge aneurysm that had actually perforated when they began the surgery. He's still alive now- 18 years later. This is survivable, with a really great hospital and thoracic surgeon, who regularly does this surgery. A major teaching hospital is ideal.

Try to keep your hubby calm- very hard with all of the stress you both are under. Keeping his BP LOW is very helpful. Once you identify the hospital, talk to the social workers there. Make sure they know how fragile you are too. They can help you with financial arrangements. Make sure you get the same discounted rate as folks with insurance- if not better :blink: . And, keep in mind, all you have to commit to is monthly payments- not paying a lump sum.

Is the defibrillator for your husband? Why? I would guess that would not be good to use on someone with a large aneurysm.... By all means, do whatever his doctor recommends.

YES, this kind of stress will make MCAD/POTS much worse even with doxepin. Once you get to a less stressful place, the doxepin will most likely be effective again. Do you have friends/family nearby to help you?

Tennille, your post brought tears to my eyes. I know that God will hold your dear husband in the palm of his hand (throughout this) and YOU in his other.

Prayers and blessings coming your way for strength, grace & the health to get through this-

Julie

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Tennille,

So sorry you are dealing with this. Stress definitely makes my symptoms worse, and I can't imagine the stress you are under right now. With regard to the doxepin, in helps me along with all the other MCAD meds - you were probably on the right track, maybe needing to add some others, only to get knocked down by all this.

Keep us posted and let us know if we can help - we'll be thinking of you.

Sarah

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Tennile, I am so sorry that you and your husband and dealing with such adversity. We are all praying for you and your husband. Please keep us informed of his status and how you are feeling.

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Thinking of you and your husband and sending lots of healing thoughts to both of you.

My brother in law had an aortic aneurysm. We were warned about the same thing regarding his prognosis with surgery. But he came through it fine and is doing well now. I certainly hope you all have as good of an outcome.

Hope you are getting some help and support for you and your family through all of this.

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Hey yall,

Just wanted to say how amazing you guys are on here and wanted to say how deeply I am grateful for the posts, encouraging words, prayers and love. Hubby is hanging in there but with lots of mild chest pain that's like a stabbing pain in rib cage where the heart is like a knife or someone who has their fingers clenched softly around the heart. His appt for the pre op is tuesday at 8 am. They said that was the soonest anyone could get him in. His surgeon has practiced for 19 years and has good reviews on him and specializes in thoracic aortic aneurisms, so we feel much better about that. Im a little shocked they didnt get him in sooner, but they said keep him from picking up anything, stressing, straining, bending over and etc until the pre op.

Hubbys heart doc nurse is so so so sweet and so helpful as she is helping to apply hubby for financial assistance in one area and im applying him for severeal others. We are calm for now, but worried senseless about him making it through surgery with a very diseased heart. However, the heart surgeon's nurse is very rude, shallow and not helpful at all... i talked to her several times yesterday and each time she was rash and rude... and trust me, i will say something or kindly write in a 'constructive criticism' note in the future as she has made this much worse as i insisted on questions and she insisted she wasn't going to ask the surgeon and she didnt know herself. She flat out refused to ask surgeon anything, so we have to wait till tues. I talked to the heart center 5 times yesterday, and still nothing informative really...... Im a little appalled.

We are working ever so hard to get 'things in order'. Im exhausted and after hubby's appt on tues morning, i think i may be brave enough to ask my new doc for maybe a small number of xanax or something as i feel im gonna crash at any moment but fighting my own illness so darn hard to get through this next week, but im very afraid to ask for a benzo as in our area the docs have became so paranoid with anyone asking for a controlled substance, so many times those who need it direly, get refused..... but i feel like if i can't get some med help with the nerves, anxiety and panic that is a constant volcanic level inside me that i have no ability to control or to fight; i feel like im gonna come crashing down at any moment.

Just wantede to thank everyone so much again. When all this calms down, i'll get to posting some feedback on other posts that i want to post on....

hoping everyone is doing ok on here.....

May God bless each one of you all so much

tennille

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I'm glad to hear you're both hanging in there Tenille.

I am sorry to hear that hubby is hurting I hope that he can just take it easy and try to relax as much as possible until Tuesday.

I know your mind must be full of a million questions right now but I think it is time to put your trust in this heart surgeon. They may not be able to answer all of your questions and may not know what they are getting into until they actually get in there and see what is going on with their own eyes. It sounds like your husband's surgeon has excellent experience.

At times like this we are really dependent on their knowledge and expertise to basically save our loved ones lives. The questions that come up in our mind may be based on fears and concerns and may not be pertinent to the actual procedure that takes place or the healing that will occur after. Each case may be a little different. You may have a time before surgery to go over some questions with your surgeon. He may give you the risks and benefits but basically it sounds as if you have no choice. It's either fix the problem or wait for the condition to deteriorate.

These medical professionals are very busy saving lives and may not have time to answer all of our questions that are not pertinent to what they are doing at the time which is very important and may not see where they apply directly to the procedure that needs to take place. I would say that is the reason the nurse refuses to ask his surgeon. She is unwilling to interrupt a very busy man who is saving lives every day for questions that maybe stemming from your worry.

We have to trust and let them do what they do-help us and save our lives.

They will get into your husband's chest and try to repair the aneurysm.

After he will be healing and hopefully on some type of treatment to help improve his heart failure. Basically you have to just follow post op instructions and report back to your surgeon and cardiologist as to how that is working. None of that can be foreseen before time how your husband's individual case will go-it's a work in progress.

When they did my ablation there was no way that they could know what my heart was doing until they got me in there and actually looked at the heart. Stimulated me with different substances. The thing that worked was adrenaline. They tried several before they got a reaction. Then they mapped out the pathway that was being triggered and ablated it. I was awake the entire time and they had agreed they would stop the procedure at any time I did not want to continue but it was fine, not bad at all.

Prior to that all he could tell me were the risk factors. I could hemorrhage to death, it could leave my diaphragm paralyzed and one other. He was very matter of fact. But until he got into see my heart he could not tell us what the outcome would be. After he met my husband in the cafeteria and said my procedure was a great success, went very well and they fixed the problem. None of that could be determined prior until it happened. He had the skills and equipment and we just had to trust.

It is scary very scary. I was reading things on the internet about the sinus node being totally knocked out etc. That didn't happen.

I know this is a very difficult time and I hope that the experience goes as well as possible for both of you. It makes it so hard when you have to wait for things like this.

I pray that the next couple days go well for you, maybe you can get something to help you relax a bit.

You are in our prayers.

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((((((((((Tennille & Hubby)))))))))))

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