Leading up to the date of the surgery I was becoming more and more anxious. My main concern is that they would cancel the surgery due to bed shortages, ill health or other reasons. I was especially worried because I developed an ulcer in my mouth and the doctors are pedantic about oral health because an infection in the mouth can travel to the heart. I went to the G.P. and got a prescription for antibiotics and SM33 gel to try and heal the ulcer before the surgery, but it was still there on the day I was admitted.
The weekend before the surgery was very busy, with my son's 18th birthday party. My whole family was there and it was a wonderful, happy event with music, laughter and singing. My father and sister came from interstate & overseas, and they came home with us afterward so that they could look after my sons while I was in hospital. My sister was going to stay as long as I needed her.
I was admitted at 2p.m. on Wednesday 18th August, with the surgery scheduled for Thursday. I needed to have another chest XRay and a blood test, and an echocardiogram. The anaesthatist came and saw me and I told him of my previous problems with needing CPR after an angiogram and being awake during the failed closure with a graft. He reassured me that I would be asleep during the surgery!
The echo took a very long time - the first technician took an hour then she got her supervisor to check the results and he came in and spent another hour taking more films. When I had had the first echo in February, I had been facing away from the screen so it was fascinating to watch the images of my heart and she was kind enough to explain what they were showing.
The septum or wall between the atriums (top chambers) of the heart is meant to be straight but mine has a large bow in it - the atrial septal aneurysm. It bows from the right to the left and flops back and forth with each heart beat. The doctors were trying their hardest to get a good view of the aneurysm and the two holes on either side of it, and I had to move position several times while they dug the probe into my ribs while taking my breath, holding, breathing out & holding it.
By the time I got back to the ward I'd missed tea and was ravenous - all they could offer was tea and toast so I went wandering around the hospital trying to find a vending machine which took notes to no avail. My surgeon was waiting for me when I returned. I've been looking at your echo for the last two hours" he said.
"two hours? Why?" I asked.
He proceeded to explain that although I do have a defect in my heart the holes on either side are tiny and there is no danger of the aneurysm bursting or causing any problem in the future. The pressures in my atriums are equal which means that there is minimal blood flowing from one side to the other. In other words, the defect is not bad enough to need open heart surgery.
I was a bit shocked by this - I said why didn't I have an echo earlier, when I first saw him weeks ago - I'd organised my whole life for this and people have been worried about me, my sister and father had traveled to help me and they're pensioners ...
He said that it's routine to have an echo before the surgery and that obviously what had been there a few weeks ago was now gone. I suddenly clicked what he was telling me - I didn't need open heart surgery, now or EVER. My heart condition was something I can live with which won't cause me problems later in life.
I said to him, "How come the doctors at the previous hospital saw a large hole - they said it was 3.6cm?". He said that maybe when they tried to repair it, they caused a hole which had scarred over. In order to insert the graft through the ASD, they have to insert a probe and then blow up a balloon so that the graft can fit in there. He thinks that hole may have scarred over in the last few weeks on its own. He doesn't know for sure because he wasn't there, but I do recall that there was a lot of tension in the room while they struggled for 2 hours to make the grafts fit.
He said he would refer me to a cardiologist who would be able to offer me closure with a graft as part of a trial which is going to assess the effectiveness of closing ASD's for the treatment of migraine. I asked him if he would recommend me having the holes closed with a graft and he said "No way. It means having a device in your heart which can be displaced, get infected, have clots form around it. The abnormality in your heart will cause you no problems, many people have this same abnormality and don't even know it. I would leave well enough alone".
When he left I phoned my sons and they were shocked like I was, but then we realised the implications of it. No surgery! No 6 - 8 weeks off work unpaid! No stress over continuing heart problems. I began to realise that maybe a miracle had happened here. I had seen with my very own eyes in June, the blood crossing from one side of the heart to the other through a hole during the angiogram. I know there was a hole there. It seems like the hole had healed itself over the last few weeks.
All I can put it down to is that I have been inundated with messages of support, people all over the world have been praying for me and sending me healing thoughts. Over the last few weeks I have been feeling really well - in fact I felt like a bit of a fraud having open heart surgery when I felt so well. I do believe that if many people focus on one person for healing, and they pray for them or send messages in support of healing, that person can heal. I'm proof of that. The surgeon can't explain it, all I know is, a few weeks ago the situation was pretty bad: if I didn't have this surgery my health would suffer so much over the next few years, and in 10 years I'd be so sick I wouldn't be able to have the surgery. Now he tells me that there is no pressure difference in my heart, the blood flow is minimal from one side to the other, and it won't affect my health in the future.
I don't know what to say: all I know is, I'm healed. A miracle has happened. Believe it or not, but I have faith that this can happen and I am proof of that. Positive thinking definitely has something to do with it too. If you notice, my non-de-plume is "my healthy heart" because right from the start that was my aim - to have a healthy heart. I haven't let my situation get the better of me. I released control of the situation and left it in God's hands: whatever His plan is for me, bring it on. This is all part of my life's journey and I have learned a lot from it.
The most important lessons I've learned are how important my family and friends are to me. Nothing else matters. Possessions, external things like looks, anything. I learned to focus my attention on myself more and that may sound self centered but I needed to do that in order to get well. In the process I became more of myself - before this I tended to stretch myself thin worrying about other people and what they thought of me. I learned to slow my life down and not go at a million miles per hour and how much better I feel doing that. I learned how strong my kids are - they have grown up so much this year and they impress people with their maturity.
I hope this story inspires people to look after their health more, and that healing is possible with positive thinking and the support of others. That was the aim of writing this blog in the first place. I thought I'd be writing about my recovery from open heart surgery but instead I'm writing about more spiritual matters. Even if you're not spiritual you can get something from this I hope, the message being that anything is possible if you put your mind to it. Read some books about this kind of thing, even "The Secret" tells you how to attract what you want into your life. There are many more books like that one that talk about the power of positive thinking.
So I will now be followed up with 6 monthly echocardiograms to assess my heart, and consultations with the cardiologist. I can stop thinking of myself as someone with a heart condition and get my life back to how it was, with some modifications of course: no crazy, stressful lifestyle for me. I enjoy the slower pace. I intend to focus more on my daily walks, and take up yoga again and meditate more often. I may get back into swimming and cycling but I won't do the heavy workouts again. I can get my life back and look forward to a long healthy future.
I probably won't be writing any more blogs unless there's some update which changes things. Look after yourselves and learn about healthy hearts - remember that heart disease is the biggest killer worldwide. Living life the "healthy heart" way is beneficial for everyone.
Thank you to all the people who have prayed for me or sent me messages of healing and support, you truly caused a miracle.
Thursday, August 19, 2010
Wednesday, August 11, 2010
One week to go!
Only one week till the surgery. I feel a bit of a fraud because I feel so well - I have to keep reminding myself that now is the time to have this surgery, before complications set in. I have had so much support from people in the last couple of weeks, my head is spinning. I feel so touched and inspired by all those people who care. I never knew how much people cared.
In a way, I think people are more concerned about me because I am a single mum. If you're married people assume you are getting all the support you need. This wasn't the case when I was married though. I am definitely getting more support now. My whole focus was on him and his problems with alcohol and I ignored my own health. Years of stress led to my health suffering. I'm sure if I'd stayed in that marriage I would have had some major health crisis within 5 years. I was already heading that way.
Being single allowed me to turn my focus inward and listen to my body for the first time. For years I'd put my symptoms down to stress - the migraines, palpitations, fatigue, exhaustion etc. could all be blamed on stress. I was ignoring my body and driving it into further distress by over exercising, which was my response to stress. It worked short term, to help me feel better, but long term it affected my heart.
It's no surprise to me that I found out about my heart condition within a couple of years of separation and divorce - it is like a broken heart. But now I have the opportunity to fix my broken heart, even if it involves major surgery! (Just joking!) But seriously, I am in such a good place mentally that I feel ready to tackle this thing head on and not be in denial about it. You would think that I would be depressed and anxious, but I'm not. I've been through all that when I was in the last few years of marriage, and the year afterwards, so I know the signs to look out for if I become depressed after the surgery. Apparently it's extremely common. I won't hesitate to seek medical advice about it, because I've been through it before and it's not pretty.
The only sign I have at the moment is weird dreams and nightmares that wake me up, so I know that my subconscious mind is dealing with all the anxiety about surgery while I sleep. I've always been an insomniac so this is something I'm used to.
I'm reading a fantastic book by someone who has been through the journey of heart disease including open heart surgery. He deals with all the issues like depression, denial, etc. which is what a lot of other books seem to avoid. They only go into diet, stopping smoking, exercise etc. For those interested: "The first year. Heart disease," by Lawrence D. Chilnick. I've read a lot of books, and this one is great because it doesn't just relate to people who have heart disease from obesity, smoking and lack of exercise (which don't affect me), but for everyone who is at risk.
Heart disease is the biggest killer around the world - much bigger than cancer. The risk is growing because of our lifestyles and the thing that upsets me is that our western lifestyles are being adopted by many developing nations, and their risk is increasing along with their waistlines! Even that little island in Japan where they studied the population because of their longevity, their lifespans are decreasing probably because they have 11 Macdonalds restaurants on the island now!! What are we doing to ourselves!
If you're reading this, please look at your own lifestyle. I thought I wasn't at risk because I was so healthy, but I didn't realise that genetics is such a big risk factor. Don't be in denial - find out more about heart disease and look after yourselves and your family.
In a way, I think people are more concerned about me because I am a single mum. If you're married people assume you are getting all the support you need. This wasn't the case when I was married though. I am definitely getting more support now. My whole focus was on him and his problems with alcohol and I ignored my own health. Years of stress led to my health suffering. I'm sure if I'd stayed in that marriage I would have had some major health crisis within 5 years. I was already heading that way.
Being single allowed me to turn my focus inward and listen to my body for the first time. For years I'd put my symptoms down to stress - the migraines, palpitations, fatigue, exhaustion etc. could all be blamed on stress. I was ignoring my body and driving it into further distress by over exercising, which was my response to stress. It worked short term, to help me feel better, but long term it affected my heart.
It's no surprise to me that I found out about my heart condition within a couple of years of separation and divorce - it is like a broken heart. But now I have the opportunity to fix my broken heart, even if it involves major surgery! (Just joking!) But seriously, I am in such a good place mentally that I feel ready to tackle this thing head on and not be in denial about it. You would think that I would be depressed and anxious, but I'm not. I've been through all that when I was in the last few years of marriage, and the year afterwards, so I know the signs to look out for if I become depressed after the surgery. Apparently it's extremely common. I won't hesitate to seek medical advice about it, because I've been through it before and it's not pretty.
The only sign I have at the moment is weird dreams and nightmares that wake me up, so I know that my subconscious mind is dealing with all the anxiety about surgery while I sleep. I've always been an insomniac so this is something I'm used to.
I'm reading a fantastic book by someone who has been through the journey of heart disease including open heart surgery. He deals with all the issues like depression, denial, etc. which is what a lot of other books seem to avoid. They only go into diet, stopping smoking, exercise etc. For those interested: "The first year. Heart disease," by Lawrence D. Chilnick. I've read a lot of books, and this one is great because it doesn't just relate to people who have heart disease from obesity, smoking and lack of exercise (which don't affect me), but for everyone who is at risk.
Heart disease is the biggest killer around the world - much bigger than cancer. The risk is growing because of our lifestyles and the thing that upsets me is that our western lifestyles are being adopted by many developing nations, and their risk is increasing along with their waistlines! Even that little island in Japan where they studied the population because of their longevity, their lifespans are decreasing probably because they have 11 Macdonalds restaurants on the island now!! What are we doing to ourselves!
If you're reading this, please look at your own lifestyle. I thought I wasn't at risk because I was so healthy, but I didn't realise that genetics is such a big risk factor. Don't be in denial - find out more about heart disease and look after yourselves and your family.
Thursday, August 5, 2010
2 weeks till I join the zipper club!
I'm just focused on keeping healthy at the moment, because if I have an infection my surgery will be canceled. That's pretty hard when I work in a hospital, but I'm scrubbing my hands a lot more and taking zinc-vitamin C- echinacea-garlic tablets daily. I'm keeping a positive outlook and walking every day. What more can I do? All year I've been minimizing my stress levels, knowing what effect it has on my heart.
I used to exercise really hard - I was training for a triathlon in November '09 when I became really fatigued. I thought it was because I was training 5 times a week, and that I was just tired, but it never really went away. Since I stopped all the hard workouts at the beginning of the year, I feel much more relaxed. I used to exercise for an hour in the morning, go home and cook a meal, then work 8 hours. I always felt tired and stressed from pushing myself so hard.
I miss the exercise, especially the social and fun aspects of it, but I don't miss the injuries, muscle aches and pains and the feeling of being stressed or rushed. Just having a daily walk has helped me maintain my weight, and I feel much more at peace because I have time to smell the roses. People tell me I'll get back into fitness and sport after the surgery, but I don't know if I want to work that hard again. Exercise became a bit of an obsession for me - a bit addictive. It's nice to not be compelled to do something, or feel agitated because you don't get your "fix". I mean, I ignored my symptoms for months, if not years, and if I'd kept going at that pace I probably would have died!
I've been given the rehab programme by the hospital and I think it's aimed at elderly people, or people whose health has been compromised for a long time. I'm hoping to get back to work in 6 - 8 weeks after the surgery, but if I followed their programme I wouldn't get back for 5 or 6 months!! I think I'll have to be guided more by the surgeon as to how fast I can get back to normal activity. It will be hard to slow down to nothing! I start at the cardiac rehab officially after 4 weeks, and I'm looking forward to that. It'll be nice to get back into exercise, and it will be supervised so it'll cut down on the fear of overdoing it.
I don't think "why me?" - why has this happened to me, of all the family. I was the one who looked after myself. I think "why not me?". I'm the one in the family who is best equipped to deal with open heart surgery. The thing is, they could all have this too and not know it. The symptoms are pretty subtle and doctors don't seem to pick up on them. Plus you can live for years with an ASD and not know it till you're in your 40's, 50's or 60's. I really hope none of them have it as well - imagine a whole generation or even multiple generations who have to go through open heart surgery. Scary thought. When I'm through all of this I'll have to look into getting my sons tested - the older one had a heart murmur at birth which went away and then he had a different heart murmur, so he could have heart problems. But by the time they start causing him difficulties medicine will have advanced so far that he probably won't need open heart surgery.
My philosophy on life is that we're on a journey, life is a learning experience. I was always a bit of a control freak, but I've had to let go of all control - so much of this is out of my control anyway so why try and manipulate the situation? I just leave it in God's hands and let everything unfold as it is meant to be. I just have to trust that He knows what He's doing, and that everything will turn out OK for me and my family. That has given me peace of mind and allowed me to go with the flow - life is so much better this way.
I used to exercise really hard - I was training for a triathlon in November '09 when I became really fatigued. I thought it was because I was training 5 times a week, and that I was just tired, but it never really went away. Since I stopped all the hard workouts at the beginning of the year, I feel much more relaxed. I used to exercise for an hour in the morning, go home and cook a meal, then work 8 hours. I always felt tired and stressed from pushing myself so hard.
I miss the exercise, especially the social and fun aspects of it, but I don't miss the injuries, muscle aches and pains and the feeling of being stressed or rushed. Just having a daily walk has helped me maintain my weight, and I feel much more at peace because I have time to smell the roses. People tell me I'll get back into fitness and sport after the surgery, but I don't know if I want to work that hard again. Exercise became a bit of an obsession for me - a bit addictive. It's nice to not be compelled to do something, or feel agitated because you don't get your "fix". I mean, I ignored my symptoms for months, if not years, and if I'd kept going at that pace I probably would have died!
I've been given the rehab programme by the hospital and I think it's aimed at elderly people, or people whose health has been compromised for a long time. I'm hoping to get back to work in 6 - 8 weeks after the surgery, but if I followed their programme I wouldn't get back for 5 or 6 months!! I think I'll have to be guided more by the surgeon as to how fast I can get back to normal activity. It will be hard to slow down to nothing! I start at the cardiac rehab officially after 4 weeks, and I'm looking forward to that. It'll be nice to get back into exercise, and it will be supervised so it'll cut down on the fear of overdoing it.
I don't think "why me?" - why has this happened to me, of all the family. I was the one who looked after myself. I think "why not me?". I'm the one in the family who is best equipped to deal with open heart surgery. The thing is, they could all have this too and not know it. The symptoms are pretty subtle and doctors don't seem to pick up on them. Plus you can live for years with an ASD and not know it till you're in your 40's, 50's or 60's. I really hope none of them have it as well - imagine a whole generation or even multiple generations who have to go through open heart surgery. Scary thought. When I'm through all of this I'll have to look into getting my sons tested - the older one had a heart murmur at birth which went away and then he had a different heart murmur, so he could have heart problems. But by the time they start causing him difficulties medicine will have advanced so far that he probably won't need open heart surgery.
My philosophy on life is that we're on a journey, life is a learning experience. I was always a bit of a control freak, but I've had to let go of all control - so much of this is out of my control anyway so why try and manipulate the situation? I just leave it in God's hands and let everything unfold as it is meant to be. I just have to trust that He knows what He's doing, and that everything will turn out OK for me and my family. That has given me peace of mind and allowed me to go with the flow - life is so much better this way.
Tuesday, August 3, 2010
Support systems
I have the most amazing friends - they are the ones who stuck by me when I was going through my divorce. My friends have been my main support system because my family lives interstate or overseas. Last year I had to have a biopsy of two breast lumps which were found on a routine ultrasound - Marilyn came and supported me through that, and has been there for many many other difficult times. Brenda has been there to drive me and pick me up from hospital - she arrived at the hospital just after the staff had resuscitated me after an angiogram, and the look on her face brought it home to me how serious the situation was. Both of these friends have had parents who have gone through open heart surgery, so it's pretty confronting for them watching me go through it, but their support has been amazing.
Over the last through years my life has changed incredibly but the only constant has been my job. It's reassuring to know that it will stay the same. I can feel normal there!! Working with nurses is great - they are trained to support people, and most of them are drawn to the profession because of their caring nature. They are always there to give me a hug or to say the right thing, and their advice is always right on target. My boss was the first one to know about this apart from my best friends, and she has been really supportive of me.
My family, although separated by distance, has given me great support this year. I think it has brought us closer together. I've had fantastic conversations with each one of them and even though our outlook on life is different, it's good to know my family are there. My sister is going to drop everything to come and look after me and my boys which is fantastic.
My sons, young as they are, have been my rocks. They have really matured this year and they have stepped up to the plate. Dan is learning to cook and bake and Jordan has taken over a lot of the taxi service (dropping me & Dan at work and school) and the gardening. I'm incredibly proud of them. Dan's school has been supportive of him as well which is awesome.
I've had support from unexpected sources: Facebook has put me in touch with people I grew up with who I haven't seen in about 25 years, and some of them have sent me really supportive messages. People are so caring. I tend to withdraw into myself when I'm going through a hard time but I'm learning to reach out more. The support is out there when you need it, you just have to ask.
Thanks to all these people and to others I may have forgotten. I will always be grateful.
Over the last through years my life has changed incredibly but the only constant has been my job. It's reassuring to know that it will stay the same. I can feel normal there!! Working with nurses is great - they are trained to support people, and most of them are drawn to the profession because of their caring nature. They are always there to give me a hug or to say the right thing, and their advice is always right on target. My boss was the first one to know about this apart from my best friends, and she has been really supportive of me.
My family, although separated by distance, has given me great support this year. I think it has brought us closer together. I've had fantastic conversations with each one of them and even though our outlook on life is different, it's good to know my family are there. My sister is going to drop everything to come and look after me and my boys which is fantastic.
My sons, young as they are, have been my rocks. They have really matured this year and they have stepped up to the plate. Dan is learning to cook and bake and Jordan has taken over a lot of the taxi service (dropping me & Dan at work and school) and the gardening. I'm incredibly proud of them. Dan's school has been supportive of him as well which is awesome.
I've had support from unexpected sources: Facebook has put me in touch with people I grew up with who I haven't seen in about 25 years, and some of them have sent me really supportive messages. People are so caring. I tend to withdraw into myself when I'm going through a hard time but I'm learning to reach out more. The support is out there when you need it, you just have to ask.
Thanks to all these people and to others I may have forgotten. I will always be grateful.
Saturday, July 31, 2010
This doctor is going to fix my heart!
Open heart surgery isn't performed in the public hospital where I live so I was referred to the major cardiac hospital in my state, which is about 1 1/4 hours drive away. I had about a 5 week wait for the appointment, enough time to recover from the hectic pace of the previous few months, where I had been in and out of hospital numerous times.
On 7 July I met the surgeon who will fix my heart! I felt immediately at ease with him, especially when he emphasized that it is unacceptable for him that I should have any complications whatsoever. I said that that suits my philosophy as well, because as I am the single mother of two teenaged boys, I don't want anything bad happening to me either! He gave me his mobile phone number and said that I could let him know when I am ready for this surgery, because obviously I will need someone to look after me in the immediate post-operative period. I gave him a date in mid-August which is when a lot of my family will be here for my son's 18th birthday and he agreed to that.
How often does that happen? This doctor is caring and compassionate and cares for my welfare, not just for a body part that he has to fix! I have had no control over any of the dates of procedures or surgery up till now, and that has made me feel like my life is out of control for the last few months. At last I can organise things to suit me and my family.
Although I already knew the basics of what the surgery would entail, it was good to have him discuss it with me on a level that I could understand - he treated me very professionally. I took a copy of all my test results with me, and a typed history of all the dates of procedures etc., which he read thoroughly. This was important to me - he didn't dismiss me like a lot of other doctors do, he took me seriously and answered all my concerns. Most female patients are worried about the scar - he said he'd try and keep it as low on my chest as possible so I could still wear clothes that are low cut - I said that I don't wear low cut tops - "make the incision as large as you need to have enough visibility so that you can repair my heart with ease!"
Open heart surgery requires the heart to go on bypass - the blood is directed away from the body to a heart bypass machine which takes over the pumping action of the heart, and filters and oxygenates the blood before returning it to the body. This allows the surgeon to operate on the heart in a bloodless field. Once the heart is stopped, he will open it up to repair the septum between the atriums ( the wall between the two upper chambers of the heart) by either sewing over the defect or placing a graft over the hole. My lungs will also be deflated during the surgery.
I'll spend about 24 hours in ICU and during this time most of the tubes will be removed. I was most concerned about the pain because I know how sore my chest was after having CPR - I'll have a fentanyl or morphine PCA with a background infusion (a machine will give me narcotics straight into my bloodstream. When I'm awake enough I'll be able to control it with the push of a button). I'll be in hospital about 5 - 7 days.
The main complication to the surgery is air embolism which could cause a cerebrovascular accident or death. He has to make sure there are no bubbles of air in my heart to avoid this. He said I probably have one hole in the heart - not two, and it's been difficult for the doctors to visualize it due to it having an unusual shape, and the septum being floppy.
I've always wondered how this could have been missed for so long, especially when I have had symptoms most of my life. Apparently it worsens over time - if I don't get it repaired now, eventually the flow of blood from the left side to the right will reverse, and I will become cyanotic (blue). The pressure within my heart will cause damage to the valves and eventually I will get so sick (in 10 years' time) that it will be inoperable. So even though it's not critical that I get it fixed now, if I leave it too much longer I will be really unwell and may be too sick to undergo the surgery. Right now I'm still fit, young and healthy enough to do it so it should be done now to prevent complications.
I feel like I'm in good hands - the doctor and the other staff know their jobs so well. It's like a well-oiled machine, so organised. I have a lot of confidence in the hospital and doctor after this visit. I left there feeling positive and enthusiastic for the first time in months.
On 7 July I met the surgeon who will fix my heart! I felt immediately at ease with him, especially when he emphasized that it is unacceptable for him that I should have any complications whatsoever. I said that that suits my philosophy as well, because as I am the single mother of two teenaged boys, I don't want anything bad happening to me either! He gave me his mobile phone number and said that I could let him know when I am ready for this surgery, because obviously I will need someone to look after me in the immediate post-operative period. I gave him a date in mid-August which is when a lot of my family will be here for my son's 18th birthday and he agreed to that.
How often does that happen? This doctor is caring and compassionate and cares for my welfare, not just for a body part that he has to fix! I have had no control over any of the dates of procedures or surgery up till now, and that has made me feel like my life is out of control for the last few months. At last I can organise things to suit me and my family.
Although I already knew the basics of what the surgery would entail, it was good to have him discuss it with me on a level that I could understand - he treated me very professionally. I took a copy of all my test results with me, and a typed history of all the dates of procedures etc., which he read thoroughly. This was important to me - he didn't dismiss me like a lot of other doctors do, he took me seriously and answered all my concerns. Most female patients are worried about the scar - he said he'd try and keep it as low on my chest as possible so I could still wear clothes that are low cut - I said that I don't wear low cut tops - "make the incision as large as you need to have enough visibility so that you can repair my heart with ease!"
Open heart surgery requires the heart to go on bypass - the blood is directed away from the body to a heart bypass machine which takes over the pumping action of the heart, and filters and oxygenates the blood before returning it to the body. This allows the surgeon to operate on the heart in a bloodless field. Once the heart is stopped, he will open it up to repair the septum between the atriums ( the wall between the two upper chambers of the heart) by either sewing over the defect or placing a graft over the hole. My lungs will also be deflated during the surgery.
I'll spend about 24 hours in ICU and during this time most of the tubes will be removed. I was most concerned about the pain because I know how sore my chest was after having CPR - I'll have a fentanyl or morphine PCA with a background infusion (a machine will give me narcotics straight into my bloodstream. When I'm awake enough I'll be able to control it with the push of a button). I'll be in hospital about 5 - 7 days.
The main complication to the surgery is air embolism which could cause a cerebrovascular accident or death. He has to make sure there are no bubbles of air in my heart to avoid this. He said I probably have one hole in the heart - not two, and it's been difficult for the doctors to visualize it due to it having an unusual shape, and the septum being floppy.
I've always wondered how this could have been missed for so long, especially when I have had symptoms most of my life. Apparently it worsens over time - if I don't get it repaired now, eventually the flow of blood from the left side to the right will reverse, and I will become cyanotic (blue). The pressure within my heart will cause damage to the valves and eventually I will get so sick (in 10 years' time) that it will be inoperable. So even though it's not critical that I get it fixed now, if I leave it too much longer I will be really unwell and may be too sick to undergo the surgery. Right now I'm still fit, young and healthy enough to do it so it should be done now to prevent complications.
I feel like I'm in good hands - the doctor and the other staff know their jobs so well. It's like a well-oiled machine, so organised. I have a lot of confidence in the hospital and doctor after this visit. I left there feeling positive and enthusiastic for the first time in months.
Friday, July 30, 2010
Percutaneous closure
The multitude of tests I had had so far indicated that the holes in my heart were tiny. There was flow of blood from the left to the right through the defect. It was fascinating to watch on the screen during my angiogram - I could see the jets of blood cross from one side to the other, and then out when the heart contracted, the flow of blood in bold colours of red & blue. My main concern at this time was that the holes would be too small to fix because the Professor had attempted to pass a probe through the defect but had been unsuccessful. I assumed this was because the holes were too small.
I had a great deal of anxiety leading up to the next hospital admission - because of needing resuscitation after my last procedure, and because I was worried that they would not be able to close the holes with grafts. This is called percutaneous closure and it involves a similar procedure to the angiogram, but they use the femoral vein (large vein in the groin) to access the venous system and pass the sheath up to the heart. The graft is then fed up through the sheath and it opens up inside the defect, effectively blocking the hole.
On 2/6/10 I was admitted to hospital for an overnight stay. I was becoming very familiar with the staff of the cardiac catheter lab. by this time. I was in good spirits - this was the day my heart would be fixed! I was looking forward to getting my life back to normal.
I made a point of telling the medical staff that I wanted to be sedated because I was anxious - I would have a TOE (transoesophageal echo) probe down my throat during the procedure which I knew would be uncomfortable. To my dismay, the doctors were so intent on what was happening on the screen that they forgot about me! I was awake during the whole procedure - for 2 hours I heard everything, felt everything and could see everything.
The professor tried again and again to get the graft to sit right in the defect. Meanwhile, the TOE was causing my gag reflex to induce vomiting and choking. The nurse suctioned me - I am sure he knew I was awake, how could he not: I had tears streaming down my face and I was gagging and choking. I couldn't help myself afterwards: I made comment that he should have been more aware of his patient and asked the doctor to sedate me more. I'm no dummy: I know that there is a nurse assigned to the patient, to observe and look after them, while other nurses are scrubbed to assist, and scouts do the running for equipment etc. The nurse assigned to me was definitely lacking.
When they completed the procedure one of the doctors told me it had been unsuccessful and that the professor would talk to me in recovery. I just started crying uncontrollably and didn't stop for 2 hours. I got a massive migraine - always seem to when they muck around with my heart.
The Nurse Unit Manager, Helen, was someone I knew because she used to work at the hospital where I work. She had been involved in my care throughout all my admissions and she was one of the nurses who resuscitated me during my last procedure. She came and stayed with me for at least two hours this time, as I bawled my eyes out.
The professor came to talk to me and explain what had happened. The holes weren't too small - they were too big (more than 3.6cm)! He had tried two different size grafts and they kept slipping through and didn't sit right so they had to remove them. Because the septum or wall between the sides of my heart is so floppy, they hadn't been able to visualize the hole properly. "So what does that mean?" I asked, "Open heart surgery" was his reply.
It's my worst nightmare come true. Right from the start I had said I didn't want open heart surgery. This heart problem had gone from being a tiny PFO which I could have closed percutaneously, using minimally invasive surgery, in an elective procedure which would help my migraines, to being a major operation which could be life threatening and would have major impact on myself, my family and every aspect of my life.
It's just a complete shock to the system. I didn't know how I'd cope. I'd run out of sick leave and used up most of my holiday leave so I'd need six weeks off work, unpaid. How would my kids cope with all of this - How terrible to put them through such an ordeal. Helen organized for the Cardiac Rehabilitation Nurse to see me and she went through a lot of the education with me. The good thing about being a nurse is that we know a lot about medical stuff naturally, but the bad thing is, there's no naivety about going through a medical problem ourselves. We've seen it all and we know what open heart surgery involves. And the weird thing is, nurses seem to suffer from the strangest complications (good example is my needing CPR after an angiogram, and being awake during a procedure that most people are sedated for and don't remember!)
I was discharged home - my boys were just happy to see me, they did not seem to realise that I was home because the procedure had been unsuccessful. I had to sit down with them individually the next day and spell out what that meant. It's probably a good thing that we've learnt more and more about my heart condition over a period of months. If I'd gone from knowing nothing one day to finding out that I need open heart surgery the next, I think the shock would have severely knocked us around.
The next day was spent on the phone, ringing my father and siblings to tell them the news. I felt like when I had had to ring them to tell them I'd separated from my ex-husband: I could hear the shock and devastation in their voices. I hate doing that to people because I know they worry about me. I don't want to be a burden to anyone, especially my family. The thing is, if I don't have this operation, I could potentially be a much bigger burden on them: the risks if I don't undergo the surgery include TIA's (transient ischaemic attacks), CVA (cerebrovascular accident), pulmonary hypertension, and worsening heart disease over time. I think having a CVA would be one of the worse things to go through, and I don't want to ever be incapacitated like that.
I don't have a choice: I have to get well for my sons. Part of being a parent is keeping yourself healthy so that you are there for them when they need you. Mum died when I was in my mid 20's, newly married, and I have felt that loss my whole life. I have to get through this for my sons.
I had a great deal of anxiety leading up to the next hospital admission - because of needing resuscitation after my last procedure, and because I was worried that they would not be able to close the holes with grafts. This is called percutaneous closure and it involves a similar procedure to the angiogram, but they use the femoral vein (large vein in the groin) to access the venous system and pass the sheath up to the heart. The graft is then fed up through the sheath and it opens up inside the defect, effectively blocking the hole.
On 2/6/10 I was admitted to hospital for an overnight stay. I was becoming very familiar with the staff of the cardiac catheter lab. by this time. I was in good spirits - this was the day my heart would be fixed! I was looking forward to getting my life back to normal.
I made a point of telling the medical staff that I wanted to be sedated because I was anxious - I would have a TOE (transoesophageal echo) probe down my throat during the procedure which I knew would be uncomfortable. To my dismay, the doctors were so intent on what was happening on the screen that they forgot about me! I was awake during the whole procedure - for 2 hours I heard everything, felt everything and could see everything.
The professor tried again and again to get the graft to sit right in the defect. Meanwhile, the TOE was causing my gag reflex to induce vomiting and choking. The nurse suctioned me - I am sure he knew I was awake, how could he not: I had tears streaming down my face and I was gagging and choking. I couldn't help myself afterwards: I made comment that he should have been more aware of his patient and asked the doctor to sedate me more. I'm no dummy: I know that there is a nurse assigned to the patient, to observe and look after them, while other nurses are scrubbed to assist, and scouts do the running for equipment etc. The nurse assigned to me was definitely lacking.
When they completed the procedure one of the doctors told me it had been unsuccessful and that the professor would talk to me in recovery. I just started crying uncontrollably and didn't stop for 2 hours. I got a massive migraine - always seem to when they muck around with my heart.
The Nurse Unit Manager, Helen, was someone I knew because she used to work at the hospital where I work. She had been involved in my care throughout all my admissions and she was one of the nurses who resuscitated me during my last procedure. She came and stayed with me for at least two hours this time, as I bawled my eyes out.
The professor came to talk to me and explain what had happened. The holes weren't too small - they were too big (more than 3.6cm)! He had tried two different size grafts and they kept slipping through and didn't sit right so they had to remove them. Because the septum or wall between the sides of my heart is so floppy, they hadn't been able to visualize the hole properly. "So what does that mean?" I asked, "Open heart surgery" was his reply.
It's my worst nightmare come true. Right from the start I had said I didn't want open heart surgery. This heart problem had gone from being a tiny PFO which I could have closed percutaneously, using minimally invasive surgery, in an elective procedure which would help my migraines, to being a major operation which could be life threatening and would have major impact on myself, my family and every aspect of my life.
It's just a complete shock to the system. I didn't know how I'd cope. I'd run out of sick leave and used up most of my holiday leave so I'd need six weeks off work, unpaid. How would my kids cope with all of this - How terrible to put them through such an ordeal. Helen organized for the Cardiac Rehabilitation Nurse to see me and she went through a lot of the education with me. The good thing about being a nurse is that we know a lot about medical stuff naturally, but the bad thing is, there's no naivety about going through a medical problem ourselves. We've seen it all and we know what open heart surgery involves. And the weird thing is, nurses seem to suffer from the strangest complications (good example is my needing CPR after an angiogram, and being awake during a procedure that most people are sedated for and don't remember!)
I was discharged home - my boys were just happy to see me, they did not seem to realise that I was home because the procedure had been unsuccessful. I had to sit down with them individually the next day and spell out what that meant. It's probably a good thing that we've learnt more and more about my heart condition over a period of months. If I'd gone from knowing nothing one day to finding out that I need open heart surgery the next, I think the shock would have severely knocked us around.
The next day was spent on the phone, ringing my father and siblings to tell them the news. I felt like when I had had to ring them to tell them I'd separated from my ex-husband: I could hear the shock and devastation in their voices. I hate doing that to people because I know they worry about me. I don't want to be a burden to anyone, especially my family. The thing is, if I don't have this operation, I could potentially be a much bigger burden on them: the risks if I don't undergo the surgery include TIA's (transient ischaemic attacks), CVA (cerebrovascular accident), pulmonary hypertension, and worsening heart disease over time. I think having a CVA would be one of the worse things to go through, and I don't want to ever be incapacitated like that.
I don't have a choice: I have to get well for my sons. Part of being a parent is keeping yourself healthy so that you are there for them when they need you. Mum died when I was in my mid 20's, newly married, and I have felt that loss my whole life. I have to get through this for my sons.
Thursday, July 29, 2010
I could have died!
Extract from my diary 13/5/10: "Wow, if only the kids knew how close I was to dying yesterday - I totally down-played it so that they don't freak out. Funny thing is, I don't feel like it was my time - I didn't see the bright light or go through a tunnel or anything although I did dream, but don't know what. Maybe I'm in shock and it hasn't hit me the reality of it but I don't think I was in any danger at that point. I just feel that I'm meant to be here for a long time more. My soul could have chosen that moment to go back to heaven but it didn't. If I'd been at home or even in the carpark or lift it would have been a different story but I wasn't.
I went up for my right heart studies at 7.30a.m. and thought I'd be there half a day. I told them I couldn't be picked up till 3pm so they bumped me to the end of the list then a couple of ambulances came in so I got delayed even more so it wasn't till 1p.m. that I got on the table. Then the Professor decided to do an angiogram as well so the procedure took an hour and they had to give me heparin (blood thinner) so the sheaths had to stay in for an hour or so (they put one in my femoral artery and one in the femoral vein - they are threaded up to the heart to enable the doctors to visualise the internal structures of the heart). The procedure wasn't pleasant - I was wide awake and could feel the wires going into my heart and my cardiac rhythm kept changing.
I had to lie flat for another 3 hours so all up 6 hours flat and only had one sandwich and 2 cups of apple juice all day. Also I got a migraine post-procedure so had a dose of IMI pethidine (narcotic) and maxalon for that. At 5p.m. they started sitting me up ready to discharge me when I felt a sharp stab in my groin and told the nurse - he applied pressure to the site which was bleeding. I said "I feel faint ... really faint" ... next thing I'm waking up and the nurses are putting the defib pads on my chest and an oxygen mask on my face and they're saying "she's back!". end of extract
Apparently I had a vasovagal episode (severe faint) and my heart went into complete heart block (stopped beating) for 2 minutes. I needed chest compressions and atropine to bring my heart rhythm back, it slowly returned and my heart rate was 38 after 2 minutes. It's routine procedure these days to do chest compressions even if there is some cardiac output to support the heart and keep the blood circulating to the vital organs. Even so, if I hadn't still been in the cardiac cathetar lab. recovery I probably wouldn't have had such a good outcome. I spent the night in CCU, monitored, and my heart rate remained steady but slow overnight. All my blood tests and ECG were normal the next morning so I was allowed to go home.
The Chest Xray showed I didn't have a broken rib from the CPR, but my chest felt like an elephant had sat on it for the next week or so. Even with pain killers I ended up on antibiotics for my chest because I have asthma, and breathing deeply was so painful.
Psychologically, for the next week I was euphoric - coming that close to death, but being spared, put me on a "high". At the same time I was convinced I was going to die. There were no "what if's" - just an absolute conviction that I would die during my next hospital admission, or that I would have a heart attack on the street. That feeling didn't go for a few weeks and it was quite weird. After the euphoria came the depression - just as I had to return to work. My first shift back I was walking up the hallway towards the nurses' station and I had to stop, I was pale and shakey and felt like I was going to pass out. I wasn't "myself" for a few weeks, in fact probably 4 or 5 weeks afterwards.
I felt at the time that I wasn't ready to die - I hadn't prepared my boys for it in any way. I wrote letters to them and my friends to be opened in the event of my death. Everything faded away in importance, apart from my sons and my family and friends. All those things that worried me or seemed so important before did not matter at all. I actually get really pissed off with myself that I had previously spent so much time worrying about external things when they don't matter if your heart isn't working properly. Last year I got braces on my teeth because I always hated the sight of my crooked teeth. That decision has meant that I am tied up into a contract until the middle of next year - two years altogether. All the time and money I spent on "looking good" over the years I now feel is a waste and I would give it all away to have my health back again.
I chose not to tell my boys that I had nearly died - I told them I had fainted in hospital so they kept me overnight. However, they overheard me telling a friend on the phone and they were so angry with me that I hadn't told them the truth. I have been completely upfront with them since then because they told me they want to know everything. I still wouldn't have told them if I had the choice - I feel that at 15 and 17 they're too young to be burdened by the worry of their mother having a heart condition which could have killed her. By trusting them with this information, they are less angry about it and they can come to me and ask me questions like "what will happen to me if you die?". It is a real fear for them because I'm a single mother. I've definitely noticed them becoming more mature this year - it makes me really proud, but sad as well that they have to go through this.
I went up for my right heart studies at 7.30a.m. and thought I'd be there half a day. I told them I couldn't be picked up till 3pm so they bumped me to the end of the list then a couple of ambulances came in so I got delayed even more so it wasn't till 1p.m. that I got on the table. Then the Professor decided to do an angiogram as well so the procedure took an hour and they had to give me heparin (blood thinner) so the sheaths had to stay in for an hour or so (they put one in my femoral artery and one in the femoral vein - they are threaded up to the heart to enable the doctors to visualise the internal structures of the heart). The procedure wasn't pleasant - I was wide awake and could feel the wires going into my heart and my cardiac rhythm kept changing.
I had to lie flat for another 3 hours so all up 6 hours flat and only had one sandwich and 2 cups of apple juice all day. Also I got a migraine post-procedure so had a dose of IMI pethidine (narcotic) and maxalon for that. At 5p.m. they started sitting me up ready to discharge me when I felt a sharp stab in my groin and told the nurse - he applied pressure to the site which was bleeding. I said "I feel faint ... really faint" ... next thing I'm waking up and the nurses are putting the defib pads on my chest and an oxygen mask on my face and they're saying "she's back!". end of extract
Apparently I had a vasovagal episode (severe faint) and my heart went into complete heart block (stopped beating) for 2 minutes. I needed chest compressions and atropine to bring my heart rhythm back, it slowly returned and my heart rate was 38 after 2 minutes. It's routine procedure these days to do chest compressions even if there is some cardiac output to support the heart and keep the blood circulating to the vital organs. Even so, if I hadn't still been in the cardiac cathetar lab. recovery I probably wouldn't have had such a good outcome. I spent the night in CCU, monitored, and my heart rate remained steady but slow overnight. All my blood tests and ECG were normal the next morning so I was allowed to go home.
The Chest Xray showed I didn't have a broken rib from the CPR, but my chest felt like an elephant had sat on it for the next week or so. Even with pain killers I ended up on antibiotics for my chest because I have asthma, and breathing deeply was so painful.
Psychologically, for the next week I was euphoric - coming that close to death, but being spared, put me on a "high". At the same time I was convinced I was going to die. There were no "what if's" - just an absolute conviction that I would die during my next hospital admission, or that I would have a heart attack on the street. That feeling didn't go for a few weeks and it was quite weird. After the euphoria came the depression - just as I had to return to work. My first shift back I was walking up the hallway towards the nurses' station and I had to stop, I was pale and shakey and felt like I was going to pass out. I wasn't "myself" for a few weeks, in fact probably 4 or 5 weeks afterwards.
I felt at the time that I wasn't ready to die - I hadn't prepared my boys for it in any way. I wrote letters to them and my friends to be opened in the event of my death. Everything faded away in importance, apart from my sons and my family and friends. All those things that worried me or seemed so important before did not matter at all. I actually get really pissed off with myself that I had previously spent so much time worrying about external things when they don't matter if your heart isn't working properly. Last year I got braces on my teeth because I always hated the sight of my crooked teeth. That decision has meant that I am tied up into a contract until the middle of next year - two years altogether. All the time and money I spent on "looking good" over the years I now feel is a waste and I would give it all away to have my health back again.
I chose not to tell my boys that I had nearly died - I told them I had fainted in hospital so they kept me overnight. However, they overheard me telling a friend on the phone and they were so angry with me that I hadn't told them the truth. I have been completely upfront with them since then because they told me they want to know everything. I still wouldn't have told them if I had the choice - I feel that at 15 and 17 they're too young to be burdened by the worry of their mother having a heart condition which could have killed her. By trusting them with this information, they are less angry about it and they can come to me and ask me questions like "what will happen to me if you die?". It is a real fear for them because I'm a single mother. I've definitely noticed them becoming more mature this year - it makes me really proud, but sad as well that they have to go through this.
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