April 10th surgery still have terrible trouble breathing

[hmr28]

My father had bypass surgery in 1998 (triple) with no heart damage or enlargement and sailed through the surgery and recovery. He had aortic valve replacement (tissue valve was used pig) for aortic stenosis on April 10th. Prior to the surgery he was diagnosed with very mild COPD. They actually said it was the heart valve that was causing his mild symptoms of breathlessness. He is an amputee but he was able to climb stairs easily, work all day (he works as a professor-talking is his job!) come home and be fairly active fixing things around the house and in the yard. Prior to the surgery he had mild breathlessness with more strenuous activity (2 flights of stairs) and his resting pulse ox was 96 or 97. He was on 02 at night because he has sleep disturbances-he has been on it for a year he was on a 2 for the volume of 02. After the surgery he had a low cbc (7.2) and his kidney function was poor for about a week he also had 2 pleural effusions which were relived. He was in the hospital for 2 weeks. Prior to discharge they gave him a transfusion of one pint of blood which brought the cbc to 7.5. He could not breath at all. Standing was taxing for him but they sent him home. Since he was home he had some swelling and his lungs began to "rasp" according to the home health nurse, his pulse ox was around 92-93 on 2 and he had to be on 02 all day and night (rather than just at night as he did before the surgery). A week or so went by and we finally convinced the home health nurse that there was something seriously wrong. So she called the dr's and had him go to the er that day. The er said he was swollen and had fluid retention in his lungs. They took his cbc and it was only 8 so we saw the cardiologist (this was last wed) who finally agreed to transfuse him. He got 2 pints of blood. He also saw the lung dr the next day who said he was happy with dad's progress, this was a tough surgery, not to expect too much, his breathing would improve greatly until it is better than what it was before the surgery...blah blah. He had a few good days but by Monday I noticed he was getting breathless eaisliy again. We had to have him on 3 liters of o2 to keep his oxygen at 94 or above. We told the home health nurse and got the standard, well he'll improve it is just a bad day.....response. She actually said his lungs sounded great. It has gotten steadily worse. However, during the transfusion they provided him with lasix and sent him home on 80 mg of lasix daily. So his fluid is just about totally gone. He lost 25 lbs of fluid in less than a week. Obviously it was not just the fluid causing the breathing problems though since he is worse now! Today he was so breathless he was gasping like a fish on any movement at all, standing up took great effort. We walked about 45 feet and his 02 dropped from 94 to 77. This has happened pretty much anytime he has moved today. Also we now have him on 4 liters of 02. Sooooo what do you guys think could be going on here? What could be causing his breathlessness? What should we be asking his various dr's? Has anyone else had a similar experience with breathing problems after the surgery? I feel so terrible for him, he gasps like a fish and gets confused when the o2 level drops. He can't talk to his colleagues on the phone without coughing incessantly as soon as he speaks for more than a few sentences. He is very worried that he won't be able to go back to work in the fall, and feels like he is not recovering nearly as well as his surgeon told him he would. Heck the surgeon said he'd feel like a 40 year old after he had the surgery instead of 67, only now he feels more like 90 (he mentioned this today-how he felt let down by his expectations about how the surgery would go) Sorry for rambling so much, I just wanted to give as much info as I had in the hopes of getting some information that might help.
Oh he has very faithfully done the exercises with the spirometer but he gets so depressed when he can't even make a 1,000 most times.

 

[sarahsunshine]

I think you are doing everything that you can and are very lucky that your dad is on Oxygen to begin with. If he was not on O2, they might not have subscribed him any and they would be dealing with his situation much better.

I am not an expert by any means, but some suggestions are simply from hanging out here for the past while.

It's obvious that your dad is not receiving sufficient circulation when he does any exercise.

Has your dad received an x-ray or echo recently? There are a couple people who have gone downhill several weeks post surgery due to fluid buildup next to the heart that is decreasing it's oumping efficiency. I don't remember what it's called. This is a possibility, especially if his lungs are now clear. I would go into the ER or get an appontment with the cardiologist/surgeon immediately and request an echo to rule this out. The process of removing the fluid does not require OHS, and can have immediate improvements... if that's the problem.

I hope someone comes by soon with some more suggestions to ask the surgeon cardiologist, but your dad definitely needs to see someone soon, and if his 02 goes down to 77 with 45 ft of walking while on O2, this needs to be addressed.

 

[hmr28]

thank you!

thank you!

Hi Sarah,
Thank you for replying. I will ask the surgeon if any tests have been done to determine if there is any fluid around the heart. When he went to the ER last week they did do a chest xray which is when the noticed the fluid around the lungs (the transfusion and lasix followed that). Would the xray have caught if there was anything around the heart or is an echo better for that? It would be nice it were something simple or explainable at least then we could relax a little. Right now we are convinced they are just not listening to us regarding how bad it is.

 

[escargome]

Hi hmr28, I'm gonna throw my 2 cents in now. I call his cardiologist and give him the numbers you stated here. I would insist on an appointment today. If the cardiologist is unable to see him, then go to the ER. It is not my intent to scare you, but many of the symptoms you describe are the same as my mom suffered when her CHD was acting up. I tend to agree with Sarah, it seems like his heart is not able to fully function (it's just my opinion and I'm not a doctor) But you have to be his advocate. Be a thorn in everyones side until they provide answers and relief for your dad. Good Luck. I will keep your dad in my prayers.

 

[Sarah_Louise]

Can't help but just wanted to let you know im thinking of you and your dad & i hope everything is sorted for him soon,
Love Sarah xxx

 

[Lily]

No real idea of what's wrong EXCEPT post-op A-fib/A-flutter literally knocked my breath right out. Really awful. I remember gasping for breath just talking with the nurse on the telephone. But I wasn't in the rhythm problem constantly so my doctor didn't catch it the first followup but a few days later I happened to be in it when I saw him again.

 

[sarahsunshine]

Any updates?

 

[hmr28]

update

update

We took him to the er and then they admitted him to the hospital for what the cardiologist is calling a "tune up". They are still not telling us what is causing the problem. He does have some fluid build up again on the right side lung so they are giving iv lasix and may do another thoro on Monday but they are taking a wait and see attitude. They did a ct-no emboli (good news!), an echo (supposedly no problem with the new valve and the heart looks good). Personally I think they are clueless but I am not sure what to suggest we do next. The fluid does not seem to be enough that it would effect his breathing so much (he had much more right after the operation which was drained out and was not nearly as breathless as he is now) I suggested today it may be one of his medications. They put him on all new stuff after the surgery (except for the zocor and coumadin which he was on before). Right now he is on
Atenolol 25 mg 2x daily
Diltizaem 240mg 1x daily
The lasix which was 40 and is not 80mg
other meds-
Flomax, coumadin, iron, folic acid, zocor
They are finally seeing what we have been talking about all along though that he has such severe breathlessness on any activity that it hinders him from doing anything. So at least they can see we aren't just being complainers which is the feeling I got when we took him to see all the Dr's individually last week (when they all said oh he's fine, just healing, give him time...etc) boy have they changed there tune now. They are attempting to blame each other now, the cardiologist blamed the lungs and the pulmonoligist blamed the heart...still no consensus from the peanut gallery.

Lily you mentioned a-fib, he has actually been in permanent controlled a-fib for close to 20 years and does not seem to cause him any fatigue or problems (at least not before the operation).

If anyone else has any ideas or suggestions on what to ask the dr's or for me to do research on I'd appreciate it.
Thank you again for your help,
Helen

 

[karla]

I would assume they checked his CBC again to see what his H&H is (hemoglobin and hematocrit), especially since he was anemic and needed transfused recently?

 

[escargome]

Hi hmr28, well I sincerely hope by now those finger pointers have come up with a true reason for your dad's suffering. I will agree with you that on occassion doctors treat the families of patients like they are nuts. Just hang in there. I can't recommend any thing for your dad that hasn't already been done. Lasix while a good thing can also throw off a person's potassium levels so make sure they keep a clost on on those (kidney problems might occur). Also as karla said, how are his CBC levels? I have been keeping your family in my prayers and hope that your dad is back to his feisty self real soon.