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6 weeks post-surgery and still worse than before. Help!

lisaheart77
0 Recommendations

Ladies, I don't often post but I am at my wits end. I'm 44 and have been pretty fit most of my adult life. After worsening shortness of breath and an increasingly loud heart murmur sent me to a cardiologist, I found out in November that I had 100 percent blockage in one artery, 80 percent in another, and moderate damage to two heart valves from radiation I received for cancer when I was 20. They put a stent in one and left the other alone. In the ensuing months I've had further evaluation and because of severe shortness of breath, we decided to go ahead with heart valve replacement surgery. Turns out it was a good thing we did it when we did since my valves were not moderately damaged but pretty much shot. I was also in congestive heart failure. So they did a double valve replacement (mitral and aortic) and a single bypass.

Since then, I've had a lot of problems with fluid retention. Not in my legs at all (my feet don't swell or anything) but mainly in my body. I get completely winded when I exert myself even slightly like putting on pants or getting out of a car (though sitting is okay). I had a liter of fluid tapped from around my right lung and they said I would feel so much better after, but I don't. My doctor said that's because I still have pleural effusion and put me on diuretics, but its like I'm taking nothing. '

It's been six weeks since the surgery. I am still not even close to breathing as well as I did prior. It's scary! By the way, they have said my heart muscle was undamaged so that is good news.

Anyone else have a similar experience?

Explore topics in this discussion:

Exercise Surgery Back pain Beta blockers Hernia Lasix Hiatal hernia Stress Uterine cancer Fever Cardiomyopathy Hypertension Edema Aortic stenosis Diarrhea Cancer Heart failure Lipitor Bypass surgery Colchicine Pneumonia Hypertrophic cardiomyopathy Stent Omeprazole Dehydration Arthritis Coumadin Furosemide Pain Pacemaker Heart attack Congestive heart failure

19 replies

Kennarina

Hello Lisa - what a dreadful story! I have not had anything similar, but my gut feeling is that you MUST go immediately back to your doctor, especially with your heart failure diagnosis. By six weeks post-op after virtually ANY medical procedure, the patient should be seeing some improvement.

Please don't take NO for an answer.

Good luck and please keep us posted....

XOXOXO


http://www.myheartsisters.org

spared

I had by pass surgery 7 weeks ago and I also have plural effusion. The doctor said he hoped my body would absorb it over time. My breathing is getting better....but I am still out of breath when I go upstairs. It is frustrating going from being a runner to feeling so out of shape. Listen to your body. If it isn't improving.....go back to the doctor and keep going until someone listens.

BonnieX2

Hi, I had my second bypass surgery on May 6th, I also still am experiencing shortness of breath. I also had a pleural effusion, but, not enough to drain the fluid. My heart surgeon said that some people have more shortness of breath than others. I had absolutely no shortness of breath during the first open heart which was 4 1/2 yrs ago. I have not a clue why I am having so much trouble this time, go figure!! I'm half way wondering if my problem is with the beta blocker I was off from for two weeks before restarting. Let's hope this ongoing problem goes away soon so we can get on with the rest of the healing process. Good luck!

gracie62

Lisa:
I have never had anything like your issues, but Bonnie may be onto something. Have you checked each and every one of the meds you are on, cardiac or otherwise, to see if any of them can be contributing to or causing your symptoms? I know some drugs can cause water retention even if you are on a diuretic - kind of counteracting each other. You might want to have your pharmacist look at your list of meds and see if he can see any that might work against each other, counter-affect, etc. A lot of drugs can cause shortness of breath, but that is usually in the fine print of those long print outs they give us. I was on 2 meds that when taken in combination caused an entirely different set of side effects than when taken alone. I found this out through an alert from www.iguard.com. That is a site where you can enter your meds and get alerts about new side effects they learn about, drug interactions, and contradictions.

I hope that you figure this out soon and get relief. I know how frustrating it can be to undergo surgery and expect to be fixed, only to still be sick or even sicker than before you had the surgery.

Take care -

Dianna

kk_stl

Lisa,
Congrats on getting through such a complicated surgery and educating yourself on some very complex research. I was told a double valve replacement increased the risk to two digits. In my mom's case, because of her age, they opted to only replace the aortic valve. She is about 6 weeks post op also.

She had asymptomatic aortic stenosis. The doctors were amazed she was never out of breath. Her stenosis was deemed critical per an echo test so she had the surgery done while her ejection fraction and other vital stats were in good shape.

She is very frustrated right now as she now gets out of breath when walking for any distance other than around the house and she never had that problem before the surgery.

If your valves were blocked (i.e., stenosis) vs. leaking, we were told that the body has to reregulate itself with the new improved blood flow now going to parts of her body that had been deprived.

Post surgery, her lungs did not recuperate very quickly and she had a combination of breathing treatments and diuretics to improve issues. It was a balancing act of administering the right dosage of a loop diuretic and not causing her kidneys to go into failure. It was explained that the fluid they inject into your body for bypass can take awhile for your lungs to clear out. In her case, they told us the fluid was inside the lungs so they could not drain the lungs.

Her kidney function dropped only once and when they temporarily took her off the diuretic to give them a chance to recover, she had to receive bipap treatments. The bipap breathing machine forces air both in/out of your lungs. It was extremely uncomfortable for her to get these treatments but necessary for her recovery. I later found out the bipap machine is a type of ventillator. I guess she was fortunate they didn't have to reinsert her breathing tube.

Anyway, her furosemide (loop diuretic) was doubled for a few weeks and then gradually reduced. She is now at 40mg which was the level she had before surgery.

She developed edema in her legs about her 4th week post op. After restricting her sodium intake in her diet and elevating her legs, the edema luckily went away in a week. The doctor choose this route vs. adjusting her medication. Given her age, she was put in an inpatient rehab/skilled nursing facility for 2 weeks after a 2 week stay at the hospital. The rehab center could not offer us a diet restricted in sodium or cholesterol if you can believe that! So, we can only guess her edema may have been a result of a high sodium diet. Lucily, she develped the edema a day before her release so we could control her diet better when she got home.

She is also taking a calcium channel blocker to control her hypertension. Her GP explained that this type of drug can also be the culprit of edema.

Since my mom was so physically deconditioned prior to her surgery (e.g., lower back pain and arthritis in both knees), it is difficult to evaluate if she is better off since the surgery. She is dealing with even more fatigue now which hopefully will improve over time.

I did alot of research about asymptomatic aortic stenosis as the risk of sudden death from this condition is extremely low. She had never fainted from her problem and shortness of breath could be caused from alot of other unrelated problems. The calcium around her valve was very bad but could be explained by years of untreated hypertension. Her prior GPs couldn't figure out how to lower her blood pressure until the last one who added a calcium channel blocker to the regimen.

That's interesting that the echo test only indicated moderate valve damage in your case. We were told it was a good thing they replaced my mom's valve when they did. When they replaced her valve, they found obstruction below it from a thickened heart wall so they shaved away part of that wall to improve blood flow. I believe the condition is called Hypertrophic Cardiomyopathy with Obstruction (HCM) though nobody has confirmed this as of yet. Strangely, it was a thallium stress test that revealed this problem though nobody every explained it to us before the surgery. When her catheterization test came out clean, I didn't bother to push the "obstruction" issue noted on the stress test. I didn't realize obstruction could be caused by something other than blocked arteries. lol

They can correct the HCM without open heart surgery through alcohol ablation inserted through a catheterization procedure but since they were in there to start with for the valve replacement, they choose to treat things surgically.

She also had problems with her BP fluctuating widely post op. They waited to see if her body would regulate itself but it didn't. She's on the same regimen of BP meds prior to her surgery except her beta blocker is now doubled.

She also went into complete heart block after weaning her off the temporary pacemaker. We were told beforehand that sometimes the sinus node is affected by aortic valve replacement and a permanent pacemaker is required. She doesn't mind the pacemaker. We look at it as a type of backup in case she needs it.

She also develped afib after surgery but it was corrected through a dose of medication and went away. I'm not sure if it will resurface again but the pacemaker folks review her pacemaker EKG stats every 3 months and can detect any future problems.

We are learning to take each day with an open mind. My mom is now incontinent at times during the day. Perhaps in her weakened condition, her keegle muscles have declined. They doubled her dose of oxybutin and that seems to help things out.

Currently, her loss of appetite is her biggest complaint right now. It is difficult for her to now take all of her medication even though she splits it up in the morning and evening.

On a positive note, her chronic diarrhea seems to have cleared up but it is too soon to see if that will be long term.

She doesn't like taking her potassium supplements since they have a tendency to upset her stomach.
She is being treated with omeprazole for a large hiatal hernia as well as a safety net in case the surgery caused her a stress ulcer. She developed a lower GI bleed after the surgery in which they could never pinpoint the cause (e.g., ulcer, colitis, irritation from rectal tube inserted after surgery). Her blood count improved so that problem is at bay, at least for now.

She will begin her cardio rehab soon. Unlike yourself, she doesn't like to exercise. We are hoping the rehab will improve the shortness of breath problem. It is a 12 week program, 3x a week.

My mom's cardio doesn't seem too concerned about her congestive heart failure. It seems to be regulated okay with diet and medication (loop diuretic). Presently, she is in no danger zone for this problem. She developed CHF after an acute MI last November. For twenty years, her GPs heard a heart murmur but never ordered any cardio workup. Since she doesn't have blocked arteries, her surgeon believes the heart attack was caused by extreme dehydration from her colonoscopy in November.

As a word of caution to others...when your GP informs you that you have a heart murmur, insist that you get a cardio workup. It could end up being an innocent murmur but it could also be worse, as in her case. Interpretation of the severity of a heart murmur with a stethoscope alone is a dangerous line to walk. The surgeons admitted that most patients are often referred to them too late for them to help a patient.

Edema can also collect in the abdomen but my mom hasn't had that problem to date. Her new GP showed me how to check for it. Slightly press your index finger on the suspected area for a minute or so. After removing your finger, run it over that area. If it is indented, you have edema. We did this in an area of the leg that didn't even appear swollen! Prior to this we were only checking the ankles and feet.

I'm also assuming you aren't having any respiratory problems like congestion or a runny nose and fever and they have ruled out post op pneumonia.

Anyway, you are a young woman and I'm sure your recovery will be drastically different than for my mom who is almost 80 years old. I wish you luck and just continue being your own health care advocate.

Though it's not at the top of my priority list right now, I might have my mom goto a kidney specialist. There is some debate is the medical field about the long term use of diuretics and its impact on your kidneys. Perhaps it's not as important for my mom's age but at your young age, you might want to explore ultra filtration as a means of draining the fluid off your lungs.

I guess my mom's mitral valve could get worse with leaking now that the "dam" of blood is opened from her aortic valve. They will monitor it through a periodic echo and symptoms. On a positive note, they are now using robotics to repair/replace mitral valves so hopefully if the need arises, that will be an option for her down the road.

Please keep us posted on how you're doing. I've been away from the site for awhile but things have finally slowed down enough for me to start reading again. :-)

KK

afargelli

I have not had any of your experiences but I would like to suggest the following: Have you had a pulmanary function test? Is you blood pressure high?
Would you consider a second opinion from a Cardiologist?

It is so challenging when we are in the spin of a medical condition that we forget that we have the option to change doc's, research and reguest diagnostic tests

I hope you find the above helpful

sternum

Hi There :)

I am so sorry that you have to go through these horrendous complications. When I left the hospital
(six days after a quadruple by-pass) instead of gaining strength, I ended up losing strength. I was staying in my younger son's apartment near the Hospital. My home is a couple of hundred miles further up Island and I wanted to make sure everything went well before I left for home. It finally got to the point where I had barely enough strength to walk from the bedroom to the bathroom
(Next room over) and I could barely breathe.

That scared me enough to have my daughter call 911. When I got to the emergency room they did a couple of tests and discovered the fluid around my lungs. The next step was to tap in and put in a drain tube. Wellll !!
that turned on the faucet and they ended up draining over a litre of fluid in a very short time. After I was sent home, I had a great night's sleep and was able to move around freely. Next evening, same thing. Couldn' breathe, lost strength, etc. That time I did not wait. I had my daughter drive me back to ER and every thing was repeated on the opposite side. More fluid. But that time it did not drain as quickly. By the second time the doctor realizied there was definately something wrong and I was kept in over night to be sent to a room in the morning.

All of this is just to tell you that if your body is telling you there is a problem, don't wait for a doctor's appointment, head straight to an ER and get it dealt with immediately. You will have the problem solved and possibly avoid some very nasty complications down the road. Please, take care of yourself.
Be blessed --- Gloria ---

lisaheart77

Hi Everyone,

Thank you so much for your posts... I find myself logging into my iphone to see if new ones have come, it is so good to not feel alone here. And I will be taking your excellent advice as well. I'll be looking up my drugs to see if any might be hindering the diuretics, though all I was taking for awhile was lipitor and coumadin... so who knows.

By the way, for those on beta blockers suffering shortness of breath--I took metropolol before surgery and had my shortness of breath symptoms worsen dramatically. Despite this, they tried to give it to me the day I went home from the hospital and I ended up with symptoms akin to a panic attack, I was practically hyperventilating just from going to the restroom five feet from my bed(btw, the doctors hate this, they really want to be able to give out those beta blockers!). I am currently not on beta blockers and hopefully can avoid those bad boys!

Anyway, I am going to do a little more research to try to understand why diuretics aren't working on me. I am taking lasix twice a day (80 mg each time) and it's just not helping.

I have to admit, it is soooo discouraging every day to wake up with no improvement whatsoever... and to look back a week and see that no, no improvement over that either. However, I try to hang on to the small things--my energy is better than it was and my stamina: I can do a lot more without suffering at the end of the day like earlier in my recovery. But as for breathing? My life becomes more limited. It's hard to get around my apartment even. Shopping is out of the question, anything involving walking except the shortest distances (If I walk really slowly I manage, but if I speed it up, I feel like I'll die, or just explode). Those little scooter things are starting to look good :-)

Anyway, thanks again for responding to me. I will keep you posted if and when I start to improve. And any additional advice is much appreciated,

Lisa

kk_stl

Lisa
I completely understand your frustration. As my mom's caregiver I asked the hospitalist in the ICU if it wasn't time to bring in a lung specialist consult. He was very offended by this request but I was at that point of not seeing results quickly enough and I wasn't about to let my mom go into permanent kidney failure because they were too proud to seek help from a specialist.

I did alot of praying and alot of worrying during that time not to mention consoling my mom when she had to get the breathing treatments. We were told the combination of walking, breathing treatments and diuretics was what would help her lungs and breathing turn around.

I know you don't feel like walking when you're short of breath but it sounds like moving around is key to recovery. I also know that those breathing devices (bipap) can be used at home and ordered through a durable medical equipment provider.

The ICU nurses explained to me that the fluid was inside the lungs instead of around her lungs so draining it with a needle or tube (as they did for my friend when fluid collected around her lungs for stage 4 uterine cancer) was not an option for my mom.

They assured us that my mom wouldn't go into permanent kidney failure as they were taking blood tests frequently enough to stop the diuretic at the sign of a downturn in kidney function.

I'm not trying to scare you but you really need your kidneys monitored frequently and to be aware of the symptoms of kidney failure. I don't know what a normal dosage is for a water pill.

At my mom's followup with her surgeon--6 weeks post op they took a lung xray to make sure her lungs were clear. They were clear even though she still exhibits shortness of breath he has approved her for cardio rehab.

As you're finding out there are many culprits that can cause this condition...medication, lung fluid, etc. If you are still under your surgeon's care, I would be on the phone to him now to get this resolved.

If he doesn't respond then I'd consult a lung specialist. There might be damage you're doing to your lungs/kidneys that you are not aware of. However, specialists typically have a long wait list unless a doctor can move you up on the list.

My mom's PCP sees her every 4 weeks now, her cardio every 3 months, and her pacemaker doc every 3 months.

I am sorry you are dealing with this. It was bad enough when my mom went through this but it gave us some comfort she was in the hospital in case something went wrong. They took daily xrays pics of her lungs to evaluate how to treat her each day.

Please let us know how you are doing. The hospital gave us a nice checklist of a green/yellow/red zone for congestive heart failure. If you haven't received anything like that, I'd be happy to share a copy with you.

The doctors didn't exactly call her condition CHF when she was in ICU since the fluid in the lungs was a side effect of open heart surgery. They told us it would take several months to determine if the lung problem was chronic or long term and therefore CHF.

I know it is scary and frustrating all at the same time after undergoing such a major surgery. You have empowered yourself with research and info more than my mom ever could but please be sure to rest and take care of yourself and to ask for help from family/friends to ligten your burden so that you give your mind and body a chance to recover. It takes alot out of a caregiver to research and deal with the bureacracy of the medical field so I can only imagine how it affects the patient herself.

Please keep us posted on your progress.

KK

spared

Lisa,
How are you feeling? I am still short of breath too. The nurse said it could take a long time for the fluid to dissipate completely. It is frustrating to not be able to function they way I use to. Keep us posted.
Karen

lisaheart77

Hi KK,

Thank you so much for your post. It was really helpful on many levels. Just seeing that it's too soon to tell if its CHF puts my fears to rest for awhile. My cardiologist has been great and responsive, but you know, it's hard to get all the info you need from one person.

His PA called me today, yes on a sunday and a holiday weekend, to talk to me about the diuretics. She said that sometimes people don't absorb them well and that I could go into emergency for IV diuretics. I opted to wait until tomorrow, although now my feet are swollen in addition to everything else.

It's really hard to wake up EVERY day not ANY better. But these responses I'm getting are making me feel more optimistic at least.

KK, how is your mom doing now? I hope she has seen great improvement... Warm regards, Lisa

lisaheart77

Hi Karen,

I'm sorry to hear you are not feeling much better. I'm the same, maybe worse, since the diuretics continue to be ineffective. But tomorrow I'll go and get an IV for diuretics and that should help (I am SO OVER getting IV's:-)

I can tell this will take awhile. It's hard needing to be given a ride 40 yards because walking is too traumatic (who would have thought that slow walking would be the hardest thing I've ever done physically--I've climbed mountains in the past!).

I really hope you begin to feel better soon. Any signs of improvement are welcome at this point!

Hang in there, it's simply GOT to change!

Lisa

Ecksunbeam

Dear KK,

Hi'ya! I've been wondering about you and your mom, how ya'll are doing, etc. Thanks for popping in. I'm glad Mom pulled through--and that you chose to do a rehab facility for a couple of weeks. Also sounds like your own adrenal glands have had a chance to settle down somewhat :--)

One little suggestion: I am a massage therapist--and this works! Don't take my word for it--just try it. Have Mom very lightly tap on her top chest from her breasts to the bottom of her neck and shoulders (all around) with the finger tips of both hands for 20 or 30 seconds. It can be very light tapping. (You can also do it.) If she has fluid in her lungs, GUARANTEED she will begin to cough it up in less than 60 seconds. You can also do light karate chops with the sides of your hands, or lightly pound with your fists between her shoulder blades and the high center of her back. This sounds barbaric, especially for a frail 80 year old woman; however, it will not only not hurt her, but it will feel good! These tapping methods also have a tendency to bring up old congestion that has been stuck deep down in the lungs for a long time. It can be done several times a day. Cardiac rehab will also help strengthen and clear her lungs and additional fluid retention more than she realizes--especially the exercise bike.

I suspect that your Mom will require at least a good year of recuperation, but if she follows the program, she may be surprised to discover that a year from now she feels and looks 10 years younger!

Be careful with diueritics! She should also be following up with a high quality vitamin/mineral supplement. Might I also suggest lemonade or iced tea with lemon, if Mom likes it? Lemons help to balance out electrolytes (depleted by dieuretics), and, as contradictory as it sounds, she should stay well-hydrated.

And CONGRATULATIONS to you, KK. You are now an official ICU caregiver war hero. You've earned your stripes. Crazy-making, eh? Needless to say, you still sound sane (relatively speaking, of course. LOL!). And both you and Mom are still with us! WAY TO GO!

May the Blessings Be!

Sherrie

iowachris

Lisa,

I suffered mild atelectasis w/small pleurel effusion around 6 weeks after triple bypass.

Mine wasn't bad enough to drain. But, I tell you what I was getting fustrated that at 6 weeks I felt worse then I did being released from the hospital from the surgery.

I felt so bad on the 6th of last month my husband took me to the ER because I could hardly breath. They put me on an antibiotic and told me to have a follow up with my cardiologist.

He put me on a drug called Colchicine. It's for "gout" and he told me although I don't have gout they have found this med to help relieve the "rubbing" pain and to help me breath better. (I had shortness of breath because it hurt to breath) He told me to finish out the antibiotic.

Well I did that - and for two weeks I carried a low grade fever and just felt tired and worn out. But shortness of breath pain started to ease up. Now, I feel like I am on the road to recovery. It's now 9 weeks since my surgery and I am pain free. They still have me on Lasix and the Colchincine. I actually can pick up my 6 month old triplet grandsons again. Get on the tread mill and have a good work out.

I don't know why some of us have complications and others don't. I never felt the Lasix really was doing anything for me. But, I guess maybe thats why I only had small infusion.

I wish you the best and pain free soon. Keep us informed of your healing process and what the doctors do for it. Keep on plugging away at them to find you relief. That is what we pay them for. I'm tired of them telling us it's all in our heads.

Chris

Winglover

Glad to hear you are going to receive IV diuretics. You are on very high oral doses with no response. What is your nutritional status like? If your protein and albumin levels are low you will retain fluid constantly even with high doses of Lasix. Hope they are monitoring your kidney function as well. My dad could not get rid of the fluid in his lower body and legs because of his protein and albumin levels. Please keep us posted.
Prayers go out to you!
Lisa

Sarcasma40

Lisa,
I had trouble with fluid retention after my by-pass two years ago. (3 HA's, triple by-pass and was told no heart damage too).
I was not scheduled for follow-up appt. for two weeks but made appt. after only one week. Chest x-ray showed lungs 40% full of fluid, though the rest of me was retaining too even though I was on lasiks and diuretics. They gave me steroids and I was amazed how quickly my body was able to deal with the fluids, my breathing improved and the rest of me responded too. Everyday I felt 20% better than the day before.

I don't know if steroids are an option for you, but I wanted to mention it because it made such a difference for me so quickly.
Much love to all the sisters,
Stacey

lisaheart77

Well, I am back, back in Hotel California where you can check out anytime you like, but you can never leave.... anyway, they decided to admit me so here I am again, in the hospital. They did start me on the IV diuretics and I'm finally feeling a little bit better than I was the last few days. The swelling in my feet is gone (Yay!) but I have a lot of fluid back around my lungs. Had it tapped less than two weeks ago but it's back stronger than ever.

Yesterday, I drove myself here. It was so hard to do anything that it took me two hours to get out of my apartment and down to my car. I drove up to ER and they didn't have any parking spaces so I had to park in the garage across the street. WHAT a nightmare... yesterday I could not walk 10 feet without misery and having to stop and rest. The nice thing, I walked in, told them my doctor had called ahead and that I was 6 weeks postop and they had me in a wheelchair and in a room in about 20 seconds.

Anyway, I am feeling a little better today, and they are going to do an intense diuretic regime. They are monitoring all my blood etc. to make sure I am not creating new problems.

I am SO GLAD I have been reading posts on this website. Last night about 2 am the ER doctor FINALLY came in to talk to me. And he started talking about how I have all the symptoms of CHF and that it may be something I have to live with (he is a young doctor and this is a teaching hospital so I think he was trying t be impressive). Fortunately, one of you had mentioned that their doctor said you couldn't tell for months after open heart surgery what the real cause of this stuff is since so often it happens simply because of the surgery. I mentioned that to him and he agreed but if I hadn't read this, I would have been totally freaked out. As it is, I am cautiously optimistic.... I thank you again for your well wishes and support. It has made a tremendous difference in my outlook :-)

lisaheart77

Hi Stacey, I must have been posting at the same time as you. They have mentioned steroids as a possibility, but I am afraid of them. The times I've taken them they had a really negative impact on my weight, and my face got all puffy etc. Yes I'm vain, but vanity doesn't rule here. I would take steroids in a minute if it's necessary but I'm hoping I can take care of it withut resorting to that. Do you remember what kind of steroids you were taking? Also, did you have negative side effects in addition to the improvements?

Thanks!

Lisa

Winglover

Lisa,
So glad to hear you are getting the help you need! The IV diuretics should make you feel better in no time. Keep us posted.
Lisa

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