Leading up to Open Heart Surgery
Firstly, let me share with you my pre surgery history . Ten years ago I was diagnosed with atrial fibrillation, which necessitated blood thinners, blood pressure pills and digoxin as heart meds. Three years later, I had a stent inserted during angioplasty, and had several stress tests done over the years to check on my heart health. Fast forward 5 years and an echocardiogram was ordered, and faulty valves, both aortic and mitral were identified. Two more echocardiograms at 6 month intervals, showed I was a candidate for open heart surgery.
So you can better relate, let me tell you what I had done, during my 19 day stay:
- Coronary Artery Bypass Grafting x 2
- Aortic valve replacement
- Mitral valve replacement
- Posterior aortic root enlargement
- 3 thoracentesis procedures to remove fluid from lungs
- Cardiovascular Intensive Care Unit stay 7 days, total stay in hospital 19 days
I admit to being rather naïve about how the surgery was going to affect me both physically and mentally. I read the St. Mary’s Heart Surgery Guide, but I paid more attention to what I should pack and which medications should be stopped than to querying the severity of my surgery.
I spent 7 days in the CICU, while the booklet says a normal stay is 24 hours. But during my pre-operative visit, my surgeon downplayed the difficulties and obstacles he was expecting, by simply stating that I had no option. If I didn’t have the surgery, I wasn’t going to make it past my 75th birthday (just 14 months away).
Anxiety and panic attacks
Would I have changed my mind if I knew what was coming? Of course not – there was no option. Do I think I could have gone into surgery better prepared? Yes, certainly. No one mentioned to me that surgery and recovery could/would ramp up my anxiety and panic attacks to epic proportions. Nursing staff didn’t recognize my symptoms (cold sweats, pulse racing, nausea, anxiety) as panic attacks, nor offer any medical relief. I had to self diagnose and tell them what was happening.
Delirium
The same with delirium. Floating in and out of consciousness, I was having vivid dreams, with disembodied voices telling me not to move, do not to try to get out of bed. I found out later that my bed was set to give off a voice alarm if I tried to get out of it. Simply swinging one’s legs over the side was enough to set it off. This alarm, along with nursing staff telling me it was 4:30 in the morning, and no it was not time for breakfast, and no I couldn’t get out of bed. This was all a jumble, on endless repeat to my mind’s confused state. I had never heard that delirium is a common side effect after open heart surgery and is prevalent in at least 20% of cases and is probably much higher. A few short lines in the Heart Surgery guidebook did absolutely nothing to prepare me for nights with little or no sleep.
Sore mouth, bitten tongue
When I finally came round, and was conscious, I was offered ice chips to suck on. I realized immediately that the inside of my mouth was incredibly sore, and my voice was only a squeaky imitation of my voice prior to surgery. I had bitten my tongue, especially on the right side, and when I was offered real food, if it was acidic (orange juice), vinegary (hummus), dry and hard to chew (raisin toast) it was impossible to swallow. My go to food became cream of cauliflower soup and vanilla pudding. The remainder stayed on the tray.
Upon discharge, I immediately booked a visit to my dentist office, so that they could ascertain the amount of damage sustained to the inside of my mouth. Thank goodness, as the weeks passed, my tongue healed and my normal speaking voice returned.
CPAP Mask for sleeping
Six years ago I was diagnosed with sleep apnea, and I use a CPAP mask while I sleep to prevent episodes where I stop breathing. Without the machine it is impossible for me to get a restful night’s sleep.
I was told to bring my machine to the hospital so that I could use it overnight, when I was in 3 West. However, that proved impossible. The staff tinkered with the settings, added more oxygen to the air mix, and my anxiety levels rose to such levels that I tore off the mask at first opportunity, panting profusely, and feeling claustrophobic. The result – 12 nights of restless sleep, being awake, staring at the wall clock, watching the hours tick away. After I was discharged, the CPAP machine was taken in for service, the settings were readjusted and I could finally wear it without the accompanying anxiety and panic attacks.
My Post Cardiac Journey Aug 11, 2024
3. I greatly underestimated the following:
- Seriousness of the surgery, with its complications of water filled lung sacs which necessitated undergoing thoracentesis (lung drainage) 3 times
- Side effects which included –post surgery delirium, crippling heightened anxiety levels and panic attacks, inability to sleep, tongue damage which made eating and drinking difficult, nerve damage in right hand where ring and pinky finger felt tingly, on pins and needles, even 4 weeks after surgery
- Length of hospital stay. I was expecting 5 to 10 days, instead took 19 days.
- How frustrating it is to be hooked up to electrodes for the central nurses monitor, as the battery is heavy and necessitates wearing a hospital gown with a central pocket just to carry the battery.
- Drainage tubes, urine catheter more tubes more inconvenience
- Why be told to bring slippers when we are made to wear uncomfortable ill fitting socks with latex non slip tops and bottoms?
- I didn’t know the beds were voice alarmed, so disembodied voices sternly tell you not to more, don’t try to get out of bed, only adds to the anxiety levels already experiencing, even though in place to help keep you safe
- How exhausting a trip to the bathroom can be – toilet too low, god awful toilet paper and dispenser, can’t open cleansing wipe package to clean up after diarrhea, if you can find the wipes. Trip often resulted in an anxiety attack.
- More on my anxiety attacks. I had to self diagnosis – nobody told me what was going on. I had to go for x-rays, no big deal, x-ray done right away then sit and wait for pickup. Staff got busy I waited from 12 noon to 12:35 before someone came to fetch me. No problem to someone in control, but me, I start to feel anxious, I feel queasy, my breathing changes, I start to pant. By the time I am back in my room the nursing office has sent the nurse to check on me because my portable monitor has registered my heart rate at too high a level. She asks if I am okay, I say not really, and ask her if she would take my blood sugar, as I thought it might be too low. But no 7.2, it’s okay so she asks if I would like something to eat – I ask for vanilla pudding, it doesn’t aggravate my sore mouth. I feel better, breathing slows, and I am left to reflect on what just happened. I come to the realization I just had a panic attack of epic proportion brought on by nothing of consequence. My body had changed post cardiac surgery. In the 8 years prior to surgery II had only had abt 5 or 6 panic attacks. This was all new. My recovery was being severely hampered by anxiety which manifested itself in many ways but mostly shortness of breath, increased tremors, inability to sleep and of course a grumpy disposition. I came to locking horns with staff more than once.
- Here’s another example. 4:00 pm in the afternoon am finally allowed to have a proper shower, hair washed, feel wonderful. Next morning 9:00 am new nurse/aide asks if I want a shower today. I say no thank you. Why would I? It’s only been 17 hrs since my last one. She is persistent. After all it’s all about her and her priorities, it’s her job to keep wound site clean, blah, blah, blah. I have been in hospital 17 days – my arm and chest site have healed over, no risk of infection etc. etc. I am sitting on the toilet trying to keep my anxiety in check. She pops her head in and says how about a sponge bath while I sit on the throne. It is easier to give in than to fight. I am just so fed up with these rules that are in place supposedly for the patient’s health, but instead are just another check box to be ticked off because it is there. Too many similar examples to list. Just another patient made to feel inadequate because I don’t conform to the mold.
- How difficult it was to remember names of nurses, physio staff who are always requesting that you go for a walk, etc. etc. White board helps but not enough – make name tags more visible. Have them state their name and their role/position. I forget easily now since surgery.
- St Mary’s 3 west ward, is a mixed patient ward, where both cardio and other patients reside. Rooms hold 1, 2, 3 or 4 patients, males and females mixed Fine I suppose if you are only there a day or 2, hell on earth if you stay is closer to 2 weeks. I thank Charlene every day that she moved me to the isolation ward to help my recovery. I never would have made it through recovery in a mixed general ward.
- How I hated that blow in the tube, float the balls apparatus. My lungs filled with fluid and had to be drained 3 times, I couldn’t make it work to their satisfaction – felt like a failure – demoralizing, one size doesn’t fit everyone – quit trying to make me fit in the image. A nurse told me that she wouldn’t be doing her job if she didn’t encourage me to walk, blow, cough etc. I told her this shouldn’t be about her – it’s about me. Do I have the energy right now or am I so worn out due to lack of sleep, x-rays, lung punctures, lack of food that I just want to be left alone. It is not my job to make sure that she makes a good impression. Just immature, hasn’t yet learned empathy.
- Was not prepared to never talk to a doctor after leaving ICU. All concerns funneled through a hierarchy – nurse, charge nurse, Meagan nurse practitioner, to doctor. Weekends were the worst. Felt very alone and vulnerable on weekends. Only once talked to a doctor. The 3 cardiac surgeons at St Mary’s, rotate weekend coverage between them. I was very ill my 2nd weekend in the ward and Dr Jennifer Higgins dropped in to see me. Never met Dr Ashe, but he personally read my x-ray and determined there was no water pooling on my right lung and that I could be discharged and go home. My confidence got a boost. I was right. When the nurse came in Saturday afternoon, there was a look of trepidation on her face. The x- ray from that morning identified mild to moderate effusion on the right side. She didn’t have to tell me I wouldn’t be going home on Sunday. I said that can’t be right, and sdemanded answers. I was a pain in the butt. But that is my right. I am not a dithering old woman one step away from senility. This operation has given me a reason d’etre. I have a new lease on life. I am going to become a blogger and I am going to call my blog My Post Cardiac Journey. Me, who didn’t know what a blog was until a week ago. Me, who had no clue that open heart surgery could trigger delirium and acute anxiety issues. I learned the hard way, through experience. That is what I want to tell other people who may have gone through surgery or may be on the list and want to hear my story. I do have the ability to tell and write a good story. I have a good sense of humor and don’t take myself too seriously.
- I have only been home from hospital one week now. It is a work in progress.he asked what did I mean – she could read me the report if I wanted. I said AI must have interpreted a shadow or something on the x-ray because the last thoracentesis on the right side had the tube and bag left to drain for 2 days with no accumulation. How was it possible to fill ‘mild to moderate’ in a day and a half? Dr. Ashe has left for the day. She will ask him to look at the x-ray on Sunday morning when he returns. I am right, there is nothing there and I finally get discharged 19 days after my surgery.
Don’t take this to mean I am not immensely grateful for the care I received at St Mary’s. I had the opportunity to meet and talk to some incredible people. Many people were empathetic, understanding and caring. They gave me courage to fight through the pain, confusion and anxiety. To the few who thought I was entitled by being put in a room by myself and made snide hints, let him walk in my shoes one day. I doubt he would have fared as well as myself. I helped heal myself. I fought for myself when I felt it was necessary. I questioned unrealistic outcomes, I asked why were things being done this way, I was curious, Idemanded answers. I was a pain in the butt. But that is my right. I am not a dithering old woman one step away from senility. This operation has given me a reason d’etre. I have a new lease on life. I am going to become a blogger and I am going to call my blog My Post Cardiac Journey. Me, who didn’t know what a blog was until a week ago. Me, who had no clue that open heart surgery could trigger delirium and acute anxiety issues. I learned the hard way, through experience. That is what I want to tell other people who may have gone through surgery or may be on the list and want to hear my story. I do have the ability to tell and write a good story. I have a good sense of humor and don’t take myself too seriously.
I have only been home from hospital one week now. It is a work in progress.