What's new
By:
Filters
Cystic Fibrosis Forum (EXP)

This is a sample guest message. Register a free account today to become a member! Once signed in, you'll be able to participate on this site by adding your own topics and posts, as well as connect with other members through your own private inbox!

Open Heart Surgery

A

abloedel

New member
About two months ago, a mass was discovered in the Right Atrium of my heart. Initially, it was thought to be a blood clot and I was put on anticoagulatin therapy. There has been no change, so they've decided it's "most likely" a tumor and will have to be removed via open heart surgery.

I meet with the surgeon on Halloween (sort of a strange irony in the date), and then we will schedule the surgery - which will most likely be the same week or the following week. The CF docs wanted me on ab'x for at least week before the surgery, so I got a PICC (I SOOOO miss my port - it was so much easier) and have started my IV's.

I know it will be a very major surgery, but I have to say I'm most worried about being intubated. For those of you who have had this type of surgery, can you tell me what it's like, what to expect, etc. I'm so worried about not being able to communicate and not being able to cough and clear my lungs.

I'm also curious about anyone having this type of surgery and successes you had during recovery and what you did to help keep your lungs "clear" - as clear as possible anyway....

Thanks for any info and suggestions.

Amy
 
A

abloedel

New member
About two months ago, a mass was discovered in the Right Atrium of my heart. Initially, it was thought to be a blood clot and I was put on anticoagulatin therapy. There has been no change, so they've decided it's "most likely" a tumor and will have to be removed via open heart surgery.

I meet with the surgeon on Halloween (sort of a strange irony in the date), and then we will schedule the surgery - which will most likely be the same week or the following week. The CF docs wanted me on ab'x for at least week before the surgery, so I got a PICC (I SOOOO miss my port - it was so much easier) and have started my IV's.

I know it will be a very major surgery, but I have to say I'm most worried about being intubated. For those of you who have had this type of surgery, can you tell me what it's like, what to expect, etc. I'm so worried about not being able to communicate and not being able to cough and clear my lungs.

I'm also curious about anyone having this type of surgery and successes you had during recovery and what you did to help keep your lungs "clear" - as clear as possible anyway....

Thanks for any info and suggestions.

Amy
 
A

abloedel

New member
About two months ago, a mass was discovered in the Right Atrium of my heart. Initially, it was thought to be a blood clot and I was put on anticoagulatin therapy. There has been no change, so they've decided it's "most likely" a tumor and will have to be removed via open heart surgery.

I meet with the surgeon on Halloween (sort of a strange irony in the date), and then we will schedule the surgery - which will most likely be the same week or the following week. The CF docs wanted me on ab'x for at least week before the surgery, so I got a PICC (I SOOOO miss my port - it was so much easier) and have started my IV's.

I know it will be a very major surgery, but I have to say I'm most worried about being intubated. For those of you who have had this type of surgery, can you tell me what it's like, what to expect, etc. I'm so worried about not being able to communicate and not being able to cough and clear my lungs.

I'm also curious about anyone having this type of surgery and successes you had during recovery and what you did to help keep your lungs "clear" - as clear as possible anyway....

Thanks for any info and suggestions.

Amy
 
L

LouLou

New member
don't have any advice for you - just want to say my prayers are with you. One thought I had was while there 'in there' is there anything they can do to help your lung situation. Other than taking out a lobe which of course won't help if all your lobes are pretty healthy I don't know what they could do 'while they are in the area.' Keep us posted and see if they can take pictures if that interests you.
 
L

LouLou

New member
don't have any advice for you - just want to say my prayers are with you. One thought I had was while there 'in there' is there anything they can do to help your lung situation. Other than taking out a lobe which of course won't help if all your lobes are pretty healthy I don't know what they could do 'while they are in the area.' Keep us posted and see if they can take pictures if that interests you.
 
L

LouLou

New member
don't have any advice for you - just want to say my prayers are with you. One thought I had was while there 'in there' is there anything they can do to help your lung situation. Other than taking out a lobe which of course won't help if all your lobes are pretty healthy I don't know what they could do 'while they are in the area.' Keep us posted and see if they can take pictures if that interests you.
 
D

Debi

New member
It is my understanding that almost everyone is intubated during major surgery, whether or not they have cf. I believe, but you can ask the surgeon or anesthesiologist to be sure, that for surgery, they put you under anesthesia before intubating you. The intubation is to allow your lungs not to stress during surgery. In most surgeries, the tube is removed during recovery, and you wouldn't even know you had been intubated. However, in some cases it is necessary to remain on the ventilator for a day or two longer to give your lungs a longer chance to rest. This might be more likely for a cfer. Again, you should definitely talk to the doctor in more detail so you'll have the best answers.

I was intubated once when I was a preteen for a surgery but didn't even know about it because it was for such a short time. I was intubated about 9-10 years ago after a very bad lung infection that ran amok. I had conscious sedation while they actually did the intubation, and then was on the vent for about 5 days. I was very afraid about being intubated because it wasn't for a specific amount of time and we didn't even know if it would help. Obviously it did, for which I am very grateful to my doctor. It was a last ditch effort to save my life.

While I was intubated I communicated by writing on a spiral bound notebook. My husband had brought me a large one and several pens. I still have it. Some of the entries are really funny now because I was on mild sedatives and pain killers, and not 100% in my right mind. So, remember to take a spiral notebook and pens with you.

While intubated you will not need to worry about coughing and clearing your lungs yourself. Respiratory therapists will periodically suction out the mucous. For me, the first few times I was suctioned were very unpleasant. I learned that, for me, the best thing to do was to have the nurse give me ativan (an anti-anxiety medicine) about 15 minutes before suctioning to cut down on the anxiety. For me, I was worried while they were suctioning that I wouldn't ever be able to get another breath. Once they started giving me the anti-anxiety drugs before the suctioning, it was fine. I highly recommend telling the doctors and nurses all the things that you are worried about beforehand so they can be prepared to make you comfortable and as worry-free as possible.

Everyone is so different, so make sure you ask questions and do whatever you need to be at ease and comfortable. I think you're going to be just fine. Let us know when the surgery will be so we can send positive thoughts your way before, during and after. I am already sending good thoughts in your direction. Feel free to ask lots of questions both here and especially at the doctors' offices. I hope you will also have a chance to meet with the anesthesiologist - you might want to ask if they don't automatically schedule such a meeting. Even if you do it by phone it will help set your mind at ease a little.
 
D

Debi

New member
It is my understanding that almost everyone is intubated during major surgery, whether or not they have cf. I believe, but you can ask the surgeon or anesthesiologist to be sure, that for surgery, they put you under anesthesia before intubating you. The intubation is to allow your lungs not to stress during surgery. In most surgeries, the tube is removed during recovery, and you wouldn't even know you had been intubated. However, in some cases it is necessary to remain on the ventilator for a day or two longer to give your lungs a longer chance to rest. This might be more likely for a cfer. Again, you should definitely talk to the doctor in more detail so you'll have the best answers.

I was intubated once when I was a preteen for a surgery but didn't even know about it because it was for such a short time. I was intubated about 9-10 years ago after a very bad lung infection that ran amok. I had conscious sedation while they actually did the intubation, and then was on the vent for about 5 days. I was very afraid about being intubated because it wasn't for a specific amount of time and we didn't even know if it would help. Obviously it did, for which I am very grateful to my doctor. It was a last ditch effort to save my life.

While I was intubated I communicated by writing on a spiral bound notebook. My husband had brought me a large one and several pens. I still have it. Some of the entries are really funny now because I was on mild sedatives and pain killers, and not 100% in my right mind. So, remember to take a spiral notebook and pens with you.

While intubated you will not need to worry about coughing and clearing your lungs yourself. Respiratory therapists will periodically suction out the mucous. For me, the first few times I was suctioned were very unpleasant. I learned that, for me, the best thing to do was to have the nurse give me ativan (an anti-anxiety medicine) about 15 minutes before suctioning to cut down on the anxiety. For me, I was worried while they were suctioning that I wouldn't ever be able to get another breath. Once they started giving me the anti-anxiety drugs before the suctioning, it was fine. I highly recommend telling the doctors and nurses all the things that you are worried about beforehand so they can be prepared to make you comfortable and as worry-free as possible.

Everyone is so different, so make sure you ask questions and do whatever you need to be at ease and comfortable. I think you're going to be just fine. Let us know when the surgery will be so we can send positive thoughts your way before, during and after. I am already sending good thoughts in your direction. Feel free to ask lots of questions both here and especially at the doctors' offices. I hope you will also have a chance to meet with the anesthesiologist - you might want to ask if they don't automatically schedule such a meeting. Even if you do it by phone it will help set your mind at ease a little.
 
D

Debi

New member
It is my understanding that almost everyone is intubated during major surgery, whether or not they have cf. I believe, but you can ask the surgeon or anesthesiologist to be sure, that for surgery, they put you under anesthesia before intubating you. The intubation is to allow your lungs not to stress during surgery. In most surgeries, the tube is removed during recovery, and you wouldn't even know you had been intubated. However, in some cases it is necessary to remain on the ventilator for a day or two longer to give your lungs a longer chance to rest. This might be more likely for a cfer. Again, you should definitely talk to the doctor in more detail so you'll have the best answers.

I was intubated once when I was a preteen for a surgery but didn't even know about it because it was for such a short time. I was intubated about 9-10 years ago after a very bad lung infection that ran amok. I had conscious sedation while they actually did the intubation, and then was on the vent for about 5 days. I was very afraid about being intubated because it wasn't for a specific amount of time and we didn't even know if it would help. Obviously it did, for which I am very grateful to my doctor. It was a last ditch effort to save my life.

While I was intubated I communicated by writing on a spiral bound notebook. My husband had brought me a large one and several pens. I still have it. Some of the entries are really funny now because I was on mild sedatives and pain killers, and not 100% in my right mind. So, remember to take a spiral notebook and pens with you.

While intubated you will not need to worry about coughing and clearing your lungs yourself. Respiratory therapists will periodically suction out the mucous. For me, the first few times I was suctioned were very unpleasant. I learned that, for me, the best thing to do was to have the nurse give me ativan (an anti-anxiety medicine) about 15 minutes before suctioning to cut down on the anxiety. For me, I was worried while they were suctioning that I wouldn't ever be able to get another breath. Once they started giving me the anti-anxiety drugs before the suctioning, it was fine. I highly recommend telling the doctors and nurses all the things that you are worried about beforehand so they can be prepared to make you comfortable and as worry-free as possible.

Everyone is so different, so make sure you ask questions and do whatever you need to be at ease and comfortable. I think you're going to be just fine. Let us know when the surgery will be so we can send positive thoughts your way before, during and after. I am already sending good thoughts in your direction. Feel free to ask lots of questions both here and especially at the doctors' offices. I hope you will also have a chance to meet with the anesthesiologist - you might want to ask if they don't automatically schedule such a meeting. Even if you do it by phone it will help set your mind at ease a little.
 
J

JazzysMom

New member
I dont have any answers, but I would hope that the surgeon would discuss all this with you especially given the fact that you have CF. If they dont offer, you better ask. Good Luck & Maybe the Halloween Consult is a good omen!
 
J

JazzysMom

New member
I dont have any answers, but I would hope that the surgeon would discuss all this with you especially given the fact that you have CF. If they dont offer, you better ask. Good Luck & Maybe the Halloween Consult is a good omen!
 
J

JazzysMom

New member
I dont have any answers, but I would hope that the surgeon would discuss all this with you especially given the fact that you have CF. If they dont offer, you better ask. Good Luck & Maybe the Halloween Consult is a good omen!
 
J

JennifersHope

New member
Hi Amy... I was just intubated last Thrusday, they told me right as they were putting me to sleep that I may have to be intubated for a few days after wards, which I wasn't , thankfully... but in general they try to take you off the vent as soon as possible... I don't remember being intubated or being put on the vent at all... or waking up with it.

I think if you do end up needing to be vented for a few days.. Debis advice is out of this world great...

Also maybe you can have a few key words written on flash cards such as pain, pain meds, anxiety, mouth dry, hot, cold , etc.. so that all you have to do is point to them.. but my friend that had the open heart surgery for the myomexia didn't need to be vented past the surgery time..

I am going to be praying that for you as well.. If you do.,, please post and let us know.. I feel for you and am thinking of you.

With love,

Jennifer
 
J

JennifersHope

New member
Hi Amy... I was just intubated last Thrusday, they told me right as they were putting me to sleep that I may have to be intubated for a few days after wards, which I wasn't , thankfully... but in general they try to take you off the vent as soon as possible... I don't remember being intubated or being put on the vent at all... or waking up with it.

I think if you do end up needing to be vented for a few days.. Debis advice is out of this world great...

Also maybe you can have a few key words written on flash cards such as pain, pain meds, anxiety, mouth dry, hot, cold , etc.. so that all you have to do is point to them.. but my friend that had the open heart surgery for the myomexia didn't need to be vented past the surgery time..

I am going to be praying that for you as well.. If you do.,, please post and let us know.. I feel for you and am thinking of you.

With love,

Jennifer
 
J

JennifersHope

New member
Hi Amy... I was just intubated last Thrusday, they told me right as they were putting me to sleep that I may have to be intubated for a few days after wards, which I wasn't , thankfully... but in general they try to take you off the vent as soon as possible... I don't remember being intubated or being put on the vent at all... or waking up with it.

I think if you do end up needing to be vented for a few days.. Debis advice is out of this world great...

Also maybe you can have a few key words written on flash cards such as pain, pain meds, anxiety, mouth dry, hot, cold , etc.. so that all you have to do is point to them.. but my friend that had the open heart surgery for the myomexia didn't need to be vented past the surgery time..

I am going to be praying that for you as well.. If you do.,, please post and let us know.. I feel for you and am thinking of you.

With love,

Jennifer
 
J

Jem

New member
Just wanted to let you know that I will be praying for you. I also know a woman who had a mass the size of a golf ball removed from one of her heart chambers 4 years ago and she did very very well. You will too!!! <img src="i/expressions/heart.gif" border="0">

(((((Hugs)))))
 
J

Jem

New member
Just wanted to let you know that I will be praying for you. I also know a woman who had a mass the size of a golf ball removed from one of her heart chambers 4 years ago and she did very very well. You will too!!! <img src="i/expressions/heart.gif" border="0">

(((((Hugs)))))
 
J

Jem

New member
Just wanted to let you know that I will be praying for you. I also know a woman who had a mass the size of a golf ball removed from one of her heart chambers 4 years ago and she did very very well. You will too!!! <img src="i/expressions/heart.gif" border="0">

(((((Hugs)))))
 
You must log in or register to reply here.
Top