This time I'm scared of having valve replacement soon...

[bramma11]

Hello everyone…My name is Debbie…I am a 66 year old retired woman, and have been having more trouble with exhaustion & short of breath…I do have mild COPD which was diagnosed after a menagerie of testing in April, 2012, and then concluded Mild COPD….My last echo was in October of 2012 & concluded I am at a 50% EF with Aortic sclerotic regurgitation valve disease which was originally diagnosed in 1992 …In October, 2012 my cardio ordered a MUGA test to compare it with the next echo which, if not sooner because of my symptoms, will be scheduled in October, 2013…I have not scheduled this test to date…And, I have not been to my regular MD for any of the blood work needed to be done….Or, to my Nephrologist, or my cardio, or to my Gastroenterologist = I am months past due for all….I have never gone this long before.

Very honestly – I feel frightened this time…I’m scared!....I can’t go up & down stairs, or do housework, or shovel (I have to pay some one to have this done), or mow my lawn in summer, or do much of anything without being really short of breath and becoming exhausted. And, I have a daily/hourly chronic cough which has worsened. And, of course, nausea at times when I eat foods with gluten in them (take omeprazole for nausea on occasion).

I must be honest in admitting I started smoking again – I had the help of a Quit Coach in April, 2012 & quit for 4 months with the aid of nicotine patches & nicotine gum…BUT, I went off the Quit Coach schedule to soon & met my demise of starting again…And, like many of us when quitting I gained 25 pounds…That gain wasn’t the real reason I started – I just thought – oh well, one won’t hurt = YA RIGHT!...Anyway, I am back up to nearly 1 pack a day again…SO, I know the cigs could be the culprit of the exhaustion & short of breath being much much worse…Please believe I do know this…

Yet, at the same time, I am scared that I am close to valve replacement surgery. And, though not afraid necessarily of the surgery itself, I am afraid of the aftermath considering the problems/diseases I have that will possibly make the recovery very difficult…For example, my cardio informed that the kidney function will more than likely plummet after surgery, and may need some dialysis temporarily, and the function may not increase again – stabilize….And, of course taking warfarin/coumadin is not possible with kidney disease = I would opt for a tissue valve anyway, and because of my age would be the choice….

OK…I feel like I am whining….However, I would really like to hear some feedback as to your opinions – I know I need to quit smoking…
What do you think of a MUGA test?...
Have you had a fear like this before your cardio told you – it’s time?
I was diagnosed with valve disease in 1992, but have never felt this
frightened of being close to surgery
Do you have kidney disease & then had a valve replacement – any
problems after surgery?
Do you have any of the following list of diseases = any
difficulties/problems because of them?
Could the COPD/smoking be the only cause of being exhausted & short
of breath?...I know I wasn’t so short of breath when I quit for
those 4 months…
Anything else = please feel free to respond

Thank you for your suggestions, help and opinions
My apologies for the length of this post
Respectfully,
Debbie

Following are all of the problems/diseases I have:
1 Aortic sclerotic regurgitation valve disease = diagnosed 1992 =
moderate = ejection fraction 50
2 Nonobstructive coronary artery disease
3 Celiac = diagnosed via biopsy/not completely GF, but don't eat many
foods with gluten
4 Gastro esophageal reflux disease
5 Degenerative joint disease of spine – History of facet joint injections
in the past
6 Lumbar laminectomy = April 2010 = still have back pain with any & all
bending or standing more than 5 minutes, etc...Surgeon warned me
that a future Fusion is likely
7 Osteo arthritis = hands – knees = cortisone shots in both knees 2012
8 Osteopenia – diagnosed with bone scan
9 Stage III Chronis kidney disease = only 1 kidney = gave left kidney to
sister 1992
10 Dyslipidemia = on cholesterol med = pravastatin 40 mg -
11 Hypothyroidism due to Hashimoto’s thyroiditis = on levothyroxin 88MCG
= balanced
12 Lymphedema = in arms only
13 Edema = Dr’s told me not related to heart = idiopathic = on
Spironolactone/Aldactone = 75 mg
14 Mild COPD
15 Type 2 Diabetes = fairly careful with 'sugar' foods
16 Hypertension = not bad according to my own blood pressure testing -
can’t take any of the meds prescribed = off any meds

 

[njean]

First of, welcome to the forum, Debbie!

Talking from past experience and having had multiple OHS myself, I can well understand the fear and anxiety you are going through right now. I think the same holds true for the rest of us. But from the symptoms you described, it's time for you to do something about this....it ain't gonna fix itself! Your CHF will continue to escalate making your breathing even more labored and put more pressure on your already weakened lungs and heart.

Don't let fear stop you from doing what needs to be done. You need this surgery to prolong and better the quality of your life. Medical technology is so advanced and the knowledge heart surgeons have access to, is awesome. Once your heart is repaired and stronger, if there are other health issues to follow, they can be addressed then. In the meantime, focus on the immediate....getting your heart fixed.

Good luck to you!

 

[youngmom]

welcome to the forum. I too get confused if my shortness of breath and tiredness comes from smoking. I think you should go with the numbers. if your ef is low and ur heart is over worked then i say sugery. I guess symptoms can be a bit confusing.Get a second opinion. my prayers are with u.

 

[ski girl]

Debbie - as you said - quit smoking. For many reasons.

You do indeed have an impressive collection of medical conditions but getting your heart problems fixed will most likely HELP these problems. From what I can tell the heart issue is the most likely to kill you so get yourself in to your cardio and sort this out. You clearly have symptoms, it's time, yes it's scary but there are a boatload of people on this site who have gone through OHS and not one of us will say we wish we didn't have it done.

And recovery will be a lot easier if you go into it as healthy as you possibly can be - again, quit smoking, eat well, do some light exercise, and try to change your mindset from that of a scared victim to that of someone who is excited to see how much better her life will be post-surgery!

Good luck from down under!

 

[Heart Of The Sunrise]

Debbie: I agree with ski girl... it's time for surgery and you really should stop smoking. I can tell you my story. When diagnosed in Oct. 2012. I was absolutely terrified. I was afraid to fall asleep because I knew I would not wake-up. I went 2 weeks with practically no sleep. Things started to get better shortly after New Years. Karen and I joined the YMCA. I started walking 2 miles (in 32 minutes) 6 to 7 days per week. I did not experience any shortness of breath after walking. I lost 12 pounds. I then researched my condition....the remedies for it.....I determined what I felt was the best and right for me in terms of valve choice. I then was able to verify here on VR.org that my surgeon was very skilled at the specific procedure and the type of valve that I desired. I went into surgery in the best shape of my life. I also was well educated in the choices I had to make and felt confident in them. Fear is totally understandable. Unfortunately, it will accomplish nothing and may actually be counterproductive. My complex surgery took 9 hours from prep to ICU. I was almost released Friday- 4 days post-op from the hospital. Non-heart related issues kept me there 9 days total. I am now 3 weeks post-op today. My cardio follow-up went great early last week. Follow-up with my family physician tomorrow. I feel great and am walking two miles per day already. (4) 20 minute walks. I feel great and my normal sleep patterns are finally back. There is no question that my Cardiac-pre-hab contributed to my successful surgery and now smooth recovery!:thumbup:

 

[DebbyA]

Hi Debbie,

Welcome to the forums! You do have a lot to contend with. I second the "get it done" advice you've already gotten here. I also think that some of the fear in medical situations is not being in control. Maybe you could work with your primary physician on a plan for getting all those pre-surgery tests done and have a little control (and leave the state of denial). As Norma says, it won't improve on its own. It also occurred to me that anxiety can cause breathlessness, so if you get your valve fixed, you can eliminate TWO causes of breathlessness.
I don't know anything about kidney problems, but you should express your fears about recovery to any surgeons you interview, and consider going to a top-ranked surgical center that has more experience dealing with complicated arrays of diseases.

Keep us posted!

 

[bramma11]

I'm not sure I'm replying to all correctly...please forgive me if this way of responding to all who have given me advice is not the right way....I just want to thank all of you for your direct responses...I am taking your advice & making appointments...Yes, it's time for me to stop 'hiding'. Just so you know, I am not having anxiety - just a very very uncomfortable 'gut' feeling along with the very suspicious symptoms that 'it might be time'. I have been dealing with many of these medical problems for a long time. The diseased valve was diagnosed in 1992 & have had echos all these years. But, once again, I have never felt scared as I have been for a number of months now. And, I have never gone this long in between doctor appointments, blood work, and ordered tests....Thank you so much all for your reassurance that after recovery I can physically & emotionally feel much better......I really appreciate your input....

Respectfully with care
Debbie

 

[bramma11]

First of all, I want to thank all those of you who responded to my original post...thank you so much for your candid/direct responses...

Just to let you know I have made the appointments for the testing (Muga Scan), for my cardio, & all the blood work needed to be done beginning next week...

And, I must admit I had some pretty high anxiety just before making the call to set the appointments & after setting them...Yes, I am nervous...I am feeling calmer today & glad I finally did it...

Respectfully & with care
Debbie

 

[njean]

Glad to hear that you've taken control of some of your fear and scheduled the necessary tests. You'd be surprised how much courage we all possess when it comes to "push leads to shove". You can do it!

Let us know how things look when you get your results back. Good luck!

 

[Chris M]

Hi Debbie.

Personally I think you will almost certainly feel much better after valve surgery, especially in the areas of tiredness and breathlessness; classic symptoms of a poorly working heart and heart valve I believe.

I underwent mitral valve replacement surgery almost two years ago now. I had to wait nine months for this surgery and was unbelievably frightened at the prospect, not ever having had any health problems in my life before. So I totally understand your anxiety and I guess it's quite a normal response for some people. Once I got a date, however, I felt better, quite positive and excited in fact, and after the surgery itself I felt ok mentally so it does pass!

I would encourage you to quit smoking if you can, I'm sure it makes surgery easier/safer and certainly helps with recovery. The last thing you need is a smoker's cough after OHS, believe me!

I was a lifelong smoker; 37 years. I had a persistent cough, shortness of breath and tiredness - I got puffed out just climbing one flight of stairs in my house and everything took so much effort. Thinking my smoking was the cause of this I quit in 2010. The cough disappeared in a couple of days, as if by magic, the breathlessness & fatigue remained. THAT was when I eventually discovered it was my mitral valve, what a shock! About a year later I had the surgery which pretty much fixed the problem and now I feel great.

I know that mitral valve symptoms may be a little different to the aortic valve but there are some similarities in your story that I can identify with so I hope you will find reading about my experiences helpful.

 

[BarbATS]

Hi, Debbie,

As a 67-year-old retired woman, I feel I can relate to you. I can also say, having had mitral valve replacement surgery, with a mechanical valve, nearly 13 years ago, the sooner you do this, the better for you. When I was being monitored for 14 years after mitral valve repair, at one point my doc said (as I questioned him
about when was the right time to go ahead) "You'll know. You are the only one who will be able to make that ultimate assessment. Your body will give you the right message." I think you are hearing that message now. Good. The next item on the agenda (!) is your commitment to yourself to be in the best place--physically AND emotionally--to see this process through with all the enthusiasm and dedication to yourself you can muster. Nothing is perfect, but one thought helped me confront uncertainty and fearfulness: my realization that it was very important that I join the team that was going to be working so hard to help me! Leaving smoking behind is surely a really important aspect of this dedication to yourself and your future. Can you approach this job as your down payment on the future you? This is something ONLY YOU can give to yourself, and what a gift it will be!

I hope these thoughts might be of some help.
I wish you all the best in your journey. I would enjoy hearing from you...
Barb

 

[bramma11]

Once again, thank you all for your advice, support, and direct responses...

I made the appointment for the MUGA scan & for my cardio after the scan...However, because the scan is lengthy with a need to stay completely still, my cardio cancelled it because I have a chronic cough & it would be impossible for me to not cough...I was so disappointed with the cancellation because based on my research, the MUGA scan is more accurate with EF, etc...So, my cardio set up an apptmnt for this coming Monday. I don't know what will happen after that - another echo was mentioned...I was told that it needs to be determined whether the cough is from my lungs or heart...I am assuming that tests will be set up..If it is determined that more likely it is my lungs (COPD diagnosed), then I will have to see my Pulmonary specialist...So, here I go folks....I can't put this off any longer...the shortness of breath & fatigue & cough is really hard to deal with...

Once again, I really appreciate your help
Thank you
Respectfully with care,
Debbie

 

[virginian777]

first you have come to the right place these peple have helped me go thou two count the avrs in the last year 1st one was leaking so 2-14-13 a new one was put in.best advise i can give is come here often and you will get the answers you seek.

 

[pellicle]

Once again, thank you all for your advice, support, and direct responses...

I made the appointment for the MUGA scan & for my cardio after the scan.
... specialist...So, here I go folks....I can't put this off any longer...the shortness of breath & fatigue & cough is really hard to deal with...

Good to hear Debbie

I am sure you have made the right decision. Its hard to do but waiting won't make it better. Its always better to be younger and healthier when you have surgery and neither of these will come to you as tie goes on.

Do you have friends and family that can provide support too?

 

[Gail in Ca]

I would just add that many of us have been pretty sick going into a OHS. For my 2nd and 3rd, I was not healthy, due to CHF (2nd) and effects of bacterial endocarditis (3rd). However, I came thru really well. The surgeons have worked on so many patients that are less than healthy. If you have a very confident surgeon, you will feel confident, too, about your surgery and recovery.
Also, I wondered if your chronic cough was due to a drug. I had one caused by lisinopril. When I was taken off that one my cough disappeared. Sorry about the test but I'm sure they can get the answers they need from a different one, maybe a mri with contrast? We are all anxious before facing surgery, especially open heart. Take care.

 

[neil]

good luck debbie, as you can see you have a lot of friends here to help you

 

[bramma11]

Once again.....Thank you all for responding...

A question was asked about my cough from lisinopril....No, my cough isn't from lisinopril..I was on that med a long time ago & had a bad cough because of it......

I went to my cardio yesterday & spent a lot of time discussing everything including possible surgery (suggested I have a very good surgeon especially because of all of me medical issues besides the valve disease - in other words - Rochester,Mn = Mayo would have a better team there to deal with it all). In addition the discussion included the cough, arm pain, fatigue, shortness of breath, & the cardio definitely wants me to have the MUGA scan because it is more accurate with EF, etc....So, I am back on the schedule for this coming Thursday to have a MUGA scan (it had been cancelled because of my horrible coughing)...I feel much more confident with having a MUGA scan than another echo (echo's are more subjective)...I was given a prescription of Benzonatate (3 times daily) for the cough, and an albuterol puffer (4 times daily) - so hopefully they will help & I will be able to lie still while I have the Muga scan....

I don't feel as nervous as I was...All of you have really helped me feel better...Usually I am a woman who faces things, what ever they are, & then I deal with whatever comes my way...So, these many months of not going to these doctor appointments - ignoring it all - really isn't like me...Now, that I am 'back on track' with taking care, I feel better...

I do have one question...Have you had a MUGA scan? And, what is your opinion of the scan?

Thank you so very much for your support...It really has helped me...

Respectfully with care
Debbie

 

[bramma11]

Within my last reply/post I forgot to mention some of the results of my blood work yesterday (I won't go into the exact levels)...WBC=HIGH, RBC=HIGH, Glucose fasting=HIGH, Cholesterol =HIGH/Trig=HIGH/Hdl=LOW/Ldl=HIGH, Creatinine=HIGH...

Some of these results didn't surprise me (glucose fasting, creatinine) - But, the WBC & RBC & cholesterol levels did surprise me...My cholesterol MED (Pravastin) was bumped up to 80mg= Pravastatin is one of the lowest/safest acting cholesterol meds.

Debbie

 

[carolinemc]

Bramma11, you have mentioned a quit date. You know you will breathe better without those cancer sticks, as my mother called them. She was once a smoker, long gone now, died from RA complications. I am somber, been for 12 years now. Lungs feel better and I now know what I am allergic to, the cigs masked a lot, and had smokers cough also. Just figure out how you want to do it and go for it. You know you can't smoke in the hospital, and quit before the surgery helps a lot, I did it. You can too, just put your mind to it. I had by aortic valve replaced after being somber 7 months and still smoker free. And finding a good message board helps also. I try to be here on weekends, so if you need a quit buddy, here I am, and there are others here also for you. And the smoking is not helping the lungs breathe also. You just keep hanging in there, do as the doctors tell you and you will be fine. Don't worry, be happy. Hugs for you today. :thumbup:

 

[Pat J]

Well, you are a mess aren't you woman?!

I have absolutely been as frightened as you as I had never had surgery before, am terrified of doctors and had my aortic valve replaced 9 weeks ago.

It's no longer an option once it starts impacting your life as much as it is yours.

While there is not much you can do to avoid a valve replacement, there are some things you do have control of to prepare for the surgery. You are obviously gathering info so you will be smart patient.

You can start fortifying your body - get as healthy as you can....eat right, do whatever exercise you can, cut down on smoking, get your mind straight and maybe your emotions will follow along.

Was it easy for me?

Heck no.

Was I terrified?

Yep.

Did I survive?

Yes and most DO.

Do I ever want to do it again?

No way!

BUT I RODE MY BICYCLE TODAY. I'm alive, with a hell of a scar and doing really well. The worst was thinking about the surgery BEFORE the surgery!

I found this quote before surgery that I used as my mantra:

"You never know how strong you are until being strong is your only choice." by Bob Marley