Questions about Septal Myectomy recovery

[Bettie]

Hi,
I had my septal myectomy January 27, 2005 at the Cleveland Clinic. The surgery went fine and all of the doctors and nurses said that I did great. I was dismissed on the afternoon of January 31st.
However, I'm having several snags along the way. A few days after I was home I was nauseous and lost my dinner. I went to the emergency and the doctor said that he didn't think that it was anything to do with my surgeries because there were so many bugs going around. He gave me some medicine for my stomach and I went home.
The nausea started to clear up , but I still don't have a true hungry feeling. I was walking three times a day and went shopping with my sister and went to one of my meetings, and for several days was able to be fairly active.
Then I really started feeling nauseous and had a pain on my left side in the back and starting behind the shoulder blades and down. It was a sharp pain about like sciatica , but it wasn't constant. If I would bend a certain way or try to get out of bed it would hurt. I also started getting a little short of breath which was not a symptom for me before surgery.
My sister took me to our emergency. I live in a small town in Indiana with a population of around 13,000. They x-rayed me and found that I had fluid around my lungs. He said that there was more on the left than on the right. After calling my doctor and the Cleveland clinic they ended up taking me to a hospital at Ft. Wayne which is around 35 miles away.
I was there 4 nights . I had not seen my new cardiologist at that time. My appointment was for March 25th and they couldn't move it up sooner. I ended up with cardiologists from another group. They drew blood and blood gasses, took x-rays and monitored my heart. They gave me Ibuprophin which helped the back pain, and he gave me prevacid. It didn't seem to help and I was still nauseous. When I went home , He prescribed 2 a day which I hope will help. I couldn't eat much breakfast or lunch today, but I feel as though I can eat dinner tonight.
Before they sent be home I had another x-ray and the doctor said that it was very similar to the x-ray I had when I arrived even though I lost around 4 lbs of water in 4 nights that I was there due to the lasix. They sent me home with a prescription for one lasix to be taken each day. I have an appointment in a week to have another x-ray and blood check. I know that they are trying not to be too invasive, but do you think that they are not taking care of this soon enough?
I would also like to know if anyone has had problems with fluid around the lungs. Also I find it difficult to know where to call when I need help. I feel a bit like a hot potato being passed around. My hometown clinic would want me to call Cleveland. I called Smedira's nurse and she thought that I should check with my cardiologist which I haven't seen yet.(The reason I'm getting a new cardiologist is because I thought that the one that I had before didn't know a whole lot about HCM so I went to Dr. Lever for a 2nd opinion.
Bettie (I've written messages on here before. I'm 66 and wasn't diagnosed with HOCM until about 3 years ago,
How long does it take to be able to eat a regular meal again?

[felixdacat]

Bettie,

I had similar experiences post-Myectomy as you, but that does not mean that they were the same. Post open heart surgery can be tricky for some, a breeze for others.
Look at what Pres. Clinton is going through.
That being said, since they are giving you lasiks, are you also taking potassium? They usually give you potassium supplements because the lasiks makes you lose so much. With me, after a trip to the emergency room for sever nausea, it turned out that I had overdosed on potassium.
Most of the doctors I spoke to said that this was very unusual. Therefore, please check with your doctor before reducing or stopping the potassium.
Even when the nausea went away, I still was not hungry until I was 2 months post-op. That too is unusual.
Please keep us updated.

[Reenie]

Bettie, I believe Lynn Stewart also had some problems with fluid on the lungs and they drained it for her. I bet she'll post soon. In the meantime, I hope you're feeling better quickly.

Reenie

[Rene' Koenig]

Bettie.

By any chance did you go to Lutheran Hospital? Do you remember who the Cardiologist was? Just curious...that's where I always go.

Hope you feel better soon.

Rene'

[shirleymahoney]

Betti

I had problems with fluid also after surgery but mine was right after surgery, i mean i was full and my legs were sooo swollen it does take a while sometimes for the fluid to go it really depends on the person, i hope you are feeling better and it will get better

Shirley

[Burton Borrok]

Hi Bettie,
We remember you well. Funny thing though – You say you’re from Indiana – but you just do not look like an Indian to me. I can’t understand it.

If you look through the posts on this site you will see that lots of folks have lots of different reactions post myectomy – all the way from a glassy smooth road to an unmarked pathway of tremendous potholes. There does seem to be some similarities in all these paths however, and it may be something you would wish to bare in mind.

Everybody takes whatever reactions they happen to have seriously, and they do not rest until everything is under control and they are again heading in the right direction.

Also, whatever road is theirs to follow, I think almost everybody will readily admit, at least in retrospect, that it was a good move to have made, and they wound up better off in the long run because of it.

Sooo, stay on top of things, make sure you get the care you deserve, keep us posted, and feel better soon.
Burt

[Pam Alexson]

Hi Betty,

I am sorry to hear you are having difficulties. It can be a very trying time when you do not feel well and you have been through a lot.

I too had fluid in my lungs. They felt initially that it may have been bacterial . I was at the time 7 weeks post myectomy and realizeed that I should have been well on my way to feeling much better. I was lucky to only be a little more then 1 hour away from my HCM hospital and place they did my myectomy. I had all the same complaints that you describe and I was running fevers. Be sure to check yours.

They admitted me and did the x-rays, blood work , blood cultures, assessed me and decided even though the fluid did not look to be an exorbitant amount, that they should drain it. They did however view that it was more fluid then I had left with after my surgery. I went down and I had a left lung thoracentesis( draining of the fluid surrounding the lung ; trapped in the pleural space). Unlike president Clintons( They are going to go into a space in his ribs), they went through my back. I drained 600 cc's immediately and they hooked me up to drainage and I drained another 250cc's into the evening. When they took that fluid out , what a relief to take a deep breath. It did not turn out to culture any bacteria. Follow X-rays show the lower left lobe is somewhat collapsed. This is not an unusual occurrence to have fluid get trapped in the pleural space( lining surronding the lung). The fluid post open heart varies from person to person and each person is different in regards to if it gets better or worse; our bodies are each different.

I have had no further problems since then and it was 12-2003. It would be great if you were evaluated at the place you had surgery but this is not always possible I realize. Hopefully you can get somecoordination going between your specialists and your local provider. In retrospect I realize that just that amount of extra fluid can be too much for some. I have heard of some draining 1000cc's and more.

Felix brought up a good point regarding Lasix. Watch your potassium , it can leave you feeling nauseated when it is low. Low magnesium can also do this. My nause did not abate at the time I was drained because it was the amiodorone they had me on that was contributing to it . It did decrease however.

I hope this has helped. Be persistant; I know it is a tough time for you. It just maybe they have to drain you.

Keep us posted and hang in there.

Pam

[Bettie]

Thank you all for your post myectomy info.

Hi,
Thank you all for your fast responses to my post myectomy questions. No, they did not give me potassium and they drew plenty of my blood when I was in the hospital in order to check for different things.
I'm wondering if they will be able to drain the liquid off around the lungs using lasix.
I feel better now , but still have some shortness of breath if I try to walk to fast.
Bettie

[Pam Alexson]

Bettie, Hi

The tricky thing about using the lasix to drain fluid that is trapped in spaces is just that. It is trapped in spaces. The area has to be receptive to allowing the fluid to move . What happens in the lung is there is that pleural space that is a wrapping around the lung. When the fluid enters this space, the wrapping or membrane comes away from the lung wall and the fluid gets in there not allowing a tight seal around the lung for full inflation to occur. About 1% of people who have open heart surgery end up with this complication. Most have the fluid in the lower lobe of the lung where it is more responsive to moving out. When it gets in the lining it can get a bit more complicated. This area is likening to a capsule ; like a ballooon of fluid with not as much ability to have the advantage of larger blood vessel perfusion with direct vessel to vessel transfer, which is why it tends to sit and become more gelatiness in composition. Scar tissue build up makes the area less permeable as well. In time the area is at more risk of causing a more permanent atelectasis( collapse) of that area of the lung where the fluid is. With the nature of this fluid and the prolonged length of time that it remains trapped, the lung area can fail to reinflate even if the fluid is finally taken out.

It is technical, but you as the patient can use the understanding to be proactive and to report any symptoms that worsen or get better.

For me the Cat Scan they did revealed that the fluid amount warranted removal. The chest x-ray persay was abit inconclusive.

Discuss all these things and your concerns/ normal activity limiting symptoms with your health care providers. They need to be looking at this carefully for you.

Good luck and feel better soon.

Pam