Introduction and a couple questions

[queenofhearts]

I found this site about a week before my OHS (March 17th), but with all the preparations for surgery, didn't have a chance to sign in, but I sure wish I had. I'm a 41 yo female and until the last 6 months, never had a problem with my heart.

My surgery was to remove a tumor (papilloma fibroedema) that was growing next to my mitral valve - there was also a question whether my valve needed to be repaired or replaced, but it turned out to be okay. My problems started back in August 03 when I had a TIA, and a subsequent TEE showed what appeared to be a blood clot in my left atrium. After six months of monitoring, coumadin, and a change of cardiologists, they discovered through another TEE on Feb. 27th that my "clot" was actually a tumor. I was scheduled for surgery before I even saw the surgeon - apparently it's imperative these tumors are removed soon, especially since I already had a TIA. What a shock!

The op went according to plan, but I started retaining fluid in my chest cavity about 4 days post op, and my oxygen levels started dropping into the 80s on room air and I felt like I was suffocating, even on oxygen. My docs upped my lasix dose to the point I was spending more time in the bathroom than in bed, but I was still having problems breathing (more like gasping for air). On the 5th day, 1350cc of fluid was drained from the right side of my chest, to the surprise of my docs - apparently x-rays showed only minimal fluid retention.

Since my release from the hospital (with home oxygen), my lasix dose has been lowered a bit but I still have a "sloshing" feeling in my chest, more noticeable in the morning, or when I'm reclining or laying down. Is this considered normal or a side effect from surgery? Although my oxygen sats are back in the 90s, I still feel SOB, fatigued, and just plain icky most days. I'm walking about 1/2 mile twice a day, but still get winded and have to use the O2 again when I'm done. My docs are trying to wean me off the oxygen, although more x-rays show a bit of fluid in my chest.

Any idea if this is considered a normal post-op complication and should it start getting better soon?

 

[Ross]

Hello there and welcome to the forum.

Is it normal? Everyone is different in complications and after effects. While it's not normal to have that much fluid retention, being your not far out of surgery, it's probably something normal for you.

With continued exercise and deep breathing (Deep breathing meaning as much as you possibly can) the fluid and your O2 sats should start increasing. The best thing you can do is to exercise as much as possible. I know what it's like because I'm O2 also and very limited in what I can do. The more you get your heart rate up, the more your heart will learn to use whats available to compensate and soon things will iron out.

Recovery is long and slow, but it will get a little better each day. Have patience with yourself.

 

[Susan BAV]

Hi and welcome -

I don't have any experience that I can share or comfort you with regarding your circumstances but I think I remember reading about another member who has a tumor next to her mitral valve.

More experienced members will probably be on soon to welcome you also.

Best wishes, ~Susan W

 

[Sherry]

Hello, Queen of Hearts,
I just welcomed you on the other thread (visual episodes) but I'll welcome you here too. In regard your post surgical complications, I had a serious pericardial and plural effusion also. It was almost seven years ago, but I do remember not being able to lie flat on my back b/c I felt like I was suffocating. It took a few weeks for them to figure it out. Why it took so long, I don't know. Sounds like you're on the mend though. Take care, and again, welcome to our site. The people here are fantastic

 

[Nancy]

Hi Queenofhearts-

Welcome to the site. I think you should call your surgeon or cardiologist tomorrow and have them take a look and listen at the chest area. It might be normal, but retaining a lot of fluid isn't something you want your heart to have to deal with right now. Use your spirometer and exercise as best you can. But please get it checked out. Having a "sloshing sound" in your chest doesn't sound too "fun". If it were my husband he'd be in the surgeon's or card's office tomorrow.

I believe in "sooner rather than later".

 

[Bryan B]

Interesting subject Queen. I had my surgery the same day, but my o2 levels were in the upper 90's while I was still in ICU and have stayed in the mid to upper 90's throughout my hospital stay. After being home a few days I did have some swelling...especially in my right foot, and developed a pain in my right side about a week after coming home. During my first post-op visit to my surgeon I mentioned my swollen foot and the "hitch" in my side. He decided not to put me on Lasix, and all of my swelling has subsided. But I still have the pain in my right side. It's not constant, and only occurs during strong deep breathing...i.e. involuntary yawn, involuntary burp, or when I push my spirometer breathing to the limit. I had hoped this would dissipate like the swelling did but it has not. I plan to call my surgeon tomorrow (since I know he sees patients on Mondays). I'm hoping it's just muscle/tissue soreness from the surgery, but I don't want to overlook the possibility of it being a problem with my right lung. My left side feels great, and I feel like if it wasn't for the pain in my right side I could reach my pre-surgery spirometer readings (3000+). Instead I seem to be stuck at ~1500.

Sorry, didn't mean to highjack your thread. I just thought maybe I could get some feedback too without starting a new thread. From what I understand there is no "normal" recovery. Everyone seems to have to deal with their own body's way of reacting to the shock of the surgery. It sounds like you are doing everything right in taking care of your symptoms.

Welcome to the site fellow St. Paddy's patient!

 

[Dee]

Welcome Queen of Hearts!

I too had a tumor, but mine was attached to my mitral valve so I now have a mechanical valve. My tumor was a Myxoma, I don't know what the difference is between that and the kind you had. They were hoping that I wouldn't have to have my valve removed, but after they got in there they discovered the tumor was attached to it, bummer. I'm 39 years old and had never had anything wrong with my heart until then. It is such a shock to think that you're perfectly healthy and then before you know it you're having OHS. I went to the Dr. with some chest pains on Oct. 21, 2003 and had surgery on the 25th. It took a couple of days before they did the surgery because I had to have the tests done first. Boy, once they realize that it's a tumor in there, they want to get it out ASAP, don't they? I'm glad they didn't have to remove your valve though, I wish I would have been that lucky.

As far as the other symptoms you're having....I had some fluid retention but it seemed to dissipate on it's own pretty well. I did have pneumonia two weeks post op and was hospitalized for 3 days to clear it up. That's when they discovered the fluid around my heart. I did have quite a bit of discomfort in my left side, but I'm not sure that was because of the pneumonia or the fluid around the heart. I'm not much help for you on this part I guess.

Bryan:
If I were you I would for sure call your cardio tomorrow, your symptoms sound a lot like mine when I had pneumonia. I had a sharp pain when I would breath deep and I wasn't able to get my spirometer up as high as I was before. I guess pneumonia is fairly common after OHS. So get checked, ok?

I wish you both the best in your recovery process. It is long but it does get better with time! The one thing that I think helped me more than anything was to get into cadiac rehab right away. I started about a week and a half post-op.

Keep us up to date and welcome to both of you!

~DeeDee~

 

[queenofhearts]

Thanks for the Welcome

Thanks for the Welcome

DeeDee - wow...your story sounds like mine, only you got in for surgery quicker. My tumor was initially diagnosed as a myxoma, but it wasn't until they got inside my heart that they discovered it was a papilloma. Apparently papillomas are even a bit more rare than myxomas, but basically cause the same problems.

I don't know what to think about my fluid build-up. I've got home health care nurses visiting every 3rd day and just saw the surgeon last Thursday and the cardiologist last Friday - everyone agrees my lungs sound clear, but that's not where the fluid is building up. Of course none of them can hear anything sloshing around, maybe I just feel it more in the morning. The nurse will be visiting again on Tuesday and maybe if I stay horizontal, she'll be able to hear it.

The only other problem I'm having right now is my appetite - I have to force myself to eat and have lost quite a bit of weight, but I think it's getting better also. Had a problem vomiting in the evenings, but my docs thought it was acid buildup and changed my pepcid to nexium, which helps.

I'll be seeing my docs again next Monday, but will definitely be calling if any of this gets worse.

 

[Susan BAV]

Oh, I remember that my cardiologist had me on a one quart a day of fluid for the first month post-op also. That included soup, water, juice, any fluid at all. It took the entire quart in water just to take all the pills I had to take all day long. And the Coumadin blood draws were torturous; I was so dried up. He let me have two quarts of fluid daily after one month and after three months, he said I could consume whatever fluid I wanted to. Don't know if that helps but also be sure and do your spirometer exercises, if you were given one.

Best wishes, ~Susan W

 

[Dee]

Queen of Hearts:
So I'm assuming your tumor like the myxoma was benign. I sure hope so. I kinda wish I would have lost some weight, but the opposite happened to me, I gained a few pounds. My taste buds were so off at first, nothing tasted "normal", but I guess that didn't keep me from gaining those few pounds. I guess it's pretty normal to lose some weight after OHS from what I hear....I don't know what happened with me! I hope each day finds you feeling a little better!!


Bryan:
I sent you a private message to appologize for thinking you were new to the site! Like I said, there are sooo many people on here that sometimes I get confused who is who Sorry about that, it doesn't see to take much to confuse me these days...is that part of having OHS? I need something to blame it on! Let us know what the doc says. I hope each day finds you feeling better too!

~DeeDee~

 

[Bryan B]

Dee,

We can chalk it up to pumphead cant we?

Everything turned out ok. I'm going to start a thread just to make people aware of what I was experiencing...but I'm glad I went in!

Thanks!

 

[queenofhearts]

My Tumor

My Tumor

Dee - my tumor is benign also...my docs first thought it was a myxoma, but it wasn't until surgery that they discovered it was a papilloma fibroedema - similar to a myxoma, only a bit more rare. My surgeon has been operating on hearts for about 10 years and said he sees maybe 1 or 2 myxomas a year, but mine was the first papilloma fibroedema he's seen. He said it looked like a "pretty little sea anenome" growing next to my mitral valve - yuck! I told him I didn't share his vision of pretty! The pathologists are also preserving it to show others. Guess that's my 5 minutes of fame - being a host to a tumor!

Things are going better today - I'm breathing better today (feels like less fluid), have a bit more energy and was able to eat more today. I started taking vitamins, extra iron, and drinking some of those nutrition drinks (Boost and Ensure) so I can maintain my weight. Hopefully I've reached a turning point and will start feeling better, but it's still going to be a long road.

I wanted to thank everyone for their welcome and information. You guys are great.

 

[Dee]

Boy, I guess you do have your claim to fame!! Where did you have your surgery??

You aren't taking Coumadin or Warfarin are you?? If you are, Boost and Ensure has a ton of Vitamin K in them and that will really mess with your INR. Hopefully you're not having to take the blood thinners. That's the one real bummer about them having to remove my valve, is that I'll be on blood thinners the rest of my life and I'm having a hard time managing my INR. It seems to be going along just fine and then all of the sudden it goes down or spikes Yesterday it surprised me with a 6.0 when they want me at the highest of 4.0!! I call it the Warfarin War!!!

Glad to hear you are feeling a little better and hope you continue to with each day!!

~DeeDee~

 

[queenofhearts]

No Coumadin!

No Coumadin!

I got to stop the coumandin after the tumor was gone - one of the good side effects of this surgery! Otherwise you can be sure I wouldn't be doing the supplements and vitamins. It's nice not having to worry about what I eat.

My surgery was done at Swedish Hospital in Seattle, WA. They do a lot of heart research there and have some great docs. They also have a home health nurse program and I've been seen about every 3rd day at home since my release.

 

[Dee]

Lucky you!! I'm jealous, no coumadin!!

Do you live near Seattle?? My mom lives in Anacortes, in the San Jaun Islands. We come up to visit her every summer. Another member that I've gotten acquainted with is Lorisue and she lives near Portland. She hasn't had surgery yet, but is likely facing surgery sometime in the future.

This website is great, isn't it?? You get to know so many people and all of them know what you're going through. I only wish I would have found it earlier on.

~DeeDee~

 

[queenofhearts]

Location

Location

I'm just south of Seattle - Anacortes is a bit north of here and the San Juans are just beautiful.