I can’t breath
It started with breathing problems
We had just returned from an animal rescue mission. We rescued 6 cats from the Recoleta Cemetery in Buenos Aires, Argentina. We spent a week out there working on 2 different rescue missions: one offering guidance on TNR (trap, neuter, return of feral cats) to a group of people who manage the cat colony in Buenos Aires Botanic Gardens, and the second was removing six friendly cats from a colony that lives at Recoleta Cemetery.
It was a stressful trip; with lots of work, lots of walking, lots of running around, lots of anxiety about bringing the cats back. Nothing easy about it. While there I was extremely tired. Wait…actually before I left for the trip I was extremely tired – so tired I went and got a vitamin B12 injection hoping it would help with my energy.
You can’t cancel an animal rescue mission because you’re tired…so it went on.
While in Buenos Aires we took one of the six cats we were rescuing back to our apartment with us. She is an 8yr old beautiful long-haired black cat named Bombero. Since she was going to be our new pet cat we started letting her sleep in bed with us. Around this same time I started feeling chest congestion, would have coughing fits and had a hard time breathing when I laid down. Hmmm….I must be allergic to our new cat. Oh no!
We brought back six cats to U.S. We took five of them to a no-kill shelter, Felines Inc. in Chicago. This was already pre-arranged. We kept Bombero and brought her to our home. We already have five cats so we gave Bombero the privacy of our bedroom to settle-down and get use to the new environment.
A handful of days after we returned my congestion was getting worse – it was a heavy feeling. I just couldn’t breath and breathing when I got into bed every night seemed much more difficult.
If you can’t breath you’ll be first.
After my return from Buenos Aires the breathing problem progressed. I must be very allergic to this cat. Oh, but how I love her! I kept my breathing problems to myself. Bombero is a long-haired cat, and none of my other cats are long-haired. There must be something about her fur. I went to the petstore and bought some fur-wipes – to help remove some dander from her. This will surely help me breath. I also bought some Zyrtec. Yes, Zyrtec helps with allergies. All the while I haven’t mentioned my breathing problems to anyone – I wanted to keep Bombero!
“Wake up, your wheezing and snoring and it’s keeping me up!” says my boyfriend. “Huh? Ok.” I reply, and then go into a coughing fit. Somehow I am able to get back to sleep, but noticed I was sort of hogging all the pillows and was very much propped up and laying on an angle more than flat.
Hmm, this Zyrtec isn’t working. Then I notice, when I go up the stairs of our two-story home, I get so winded I need to stop, sit down and rest at the top of the stairs. Boy, I must be out-of-shape. I’ll go to the store and buy some supplies to start bike-riding! I’ll get my bike tuned-up later this week….uhm, I’ll do all this after I rest. I sure am tired.
Maybe I am developing asthma. I send a casual email to a friend who has severe asthma, I describe my symptoms and she sends me the info to her asthma doctor. I call to make an appointment but alas she is on vacation and won’t be back for 2 weeks. I guess I’ll wait. I must have asthma, yes, I am not allergic to Bombero – whew!
This fatigue, lack of energy and this breathing problem just won’t let up. I am busy person and this is really holding me back from getting things done.
About 5 days after returning from Buenos Aires I have a particularly bad night. I CAN NOT LAY DOWN FLAT – AT ALL. Hmm, when did this actually start. Well, when we flew back my boyfriend surprised me by upgrading us to First Class and I had a hard time laying flat and just couldn’t get comfortable. I thought First Class was all about comfort. I just lounged and watched movies instead of sleeping.
When did I start using a gazillion pillows? Hmm, that was the first night I got home. I just kept piling them on and it seemed to be more comfortable. That is sorta odd that I went from using one pillow to using every pillow in the house and a comforter…basically, sleeping upright.
Well, it’s now May 1, 2011 and it’s after midnight and I can not breath. I can’t take deep breaths, I remain calm and just take small shallow breaths. I start Googling breathing problems; allergies to long-haired cats, asthma, seasonal allergies….breathing problems after visiting Argentina…..and something catches my attention: Blood Clots! I was on a long flight, maybe I have a blood clot! Yes, that must be my problem. I will call a few emergency rooms to see what the wait times are – I would hate to have to wait hours in a waiting room.
I call two hospitals, it’s a Saturday night….the wait times are 3 to 4 hours. I called a third hospital, they aren’t even taking anymore people and recommending a different hospital…I call a fourth hospital, the nurse asks me, “What’s your problem?” I respond, “I can’t breath.” She says, “If you can’t breath you are going to be first!” Cool! Now, let’s just wait a few hours and let my boyfriend sleep some more, I’d hate to wake him up at 4am.
I dose off sitting upright on the couch. One of my cats wakes me up to feed him at 6am. I decide to then wake up my boyfriend. I go upstairs, need to sit down at the top of the stairs for a few minutes – hmmm, maybe this breathing problem and my lack of ability to run up the stairs are related – it must be that blood clot.
“Honey? Can you take me to the ER?” I ask. He pops out of bed in a panic, “What’s wrong?” “I can’t breath”, I reply. He gets dressed immediately. We go to the ER that said there would be no wait time.
As soon as I walk in I say, “I am having problems breathing, I have a blood clot”. They take my vitals, ask me questions, give me a gown and said they need to do a ton of tests. Crap, I might be here a while.
You’re in Congestive Heart Failure
I’m sorry you must have the wrong patient, I just have a blood clot.
I am the most independent person you will ever know. I tend to be a know-it-all too. Although I am really good at keeping that in check. I will listen to what you have to say and then sort of disregard it respectfully, making you think I agree, but I don’t.
I am great at putting things “away”. I live well in denial. Though in this case it’s more “disassociation”. I hate doctors, hospitals and needles, so as my symptoms progressed and I never once thought it could be heart problems….even though I am a cardiac patient and had coarctation of the aorta heart surgery when I was 2 yrs old. I hadn’t been to see my cardiologist in about 6 years. I was suppose to go once a year…but after 29 years I never had any problems, I figured I was healed. Oh, that and the last time I saw the doc he mentioned I was “obese” and needed to lose weight. At that time I was 5’4″ and 155lbs. I was offended. I never went back for another appointment.
Yes, this was dumb of me.
As I wait in the triage area of the ER, I surfed my iPad. Hospitals with wi-fi, wow, that’s cool!
A couple hours later, after tests, lots of blood work, and a CAT scan – no actual cats involved – sounds more fun than it really is…..a doctor comes in to the room and says, “You’re in congestive heart failure!” “I’m sorry, you have the wrong patient, I just have a blood clot,” is my reply. I then rattle off my name and birth date, show him my hospital wristband. He looks at his chart and checks the name and wristband and says, “No, I am talking to the right person, you are in congestive heart failure” he replies.
I feel like someone just threw a brick at my chest. Winded. I already have problems breathing, this isn’t helping. I can’t have a panic attack right now. Take small shallow breaths, breath. Ok. I start asking how this is possible and are they sure I don’t have a blood clot? They say they are admitting me. Crap. I need to call me mom.
I talk to my mom everyday. Not a big deal to have to call her right? Well, calling with bad news is never easy. I know how my mom is and to have to tell her I am being admitted to the hospital with congestive heart failure is not going to be easy. I imagine she’ll fly out the next day. Wait, the next day is Monday. I am suppose to go back to work after my two week “vacation” in Buenos Aires. Crap, I will need to take more time off.
CAT scans, EKG, echos, trans-esophageal echos, a handful of cardiologists – a whirl wind couple days…and I find out one of my valves isn’t working and they other one isn’t in great shape…but there is still something else they can’t figure out. “Do I have a regular cardiologist I can go to who knows my history?” they ask me. Oh, that guy I think….the one that thinks I was obese 10lbs ago. Great. I guess I can call him. The hospital discharges me with lasix, and metropolol. I’m breathing better.
I make an appointment for the following week. I have a major fundraiser for my favorite cat shelter, Felines Inc at the end of the week and then, as predicted my mom came to visit. I make it to the fundraiser, feeling ok, not great. I survived the weekend, just a little more tired than usual. My mom thought I looked off. Whatever she’s just a bit overly concerned. She only stayed the weekend and then returned to Florida. By Monday, I am ready to go back to work. “Honey, can you drive me?” I make this request because I am just so tired and the thought of climbing all those stairs in the subway is just exhausting.
I’ve been away from work for 3 weeks now. Spending the last week in the hospital was no fun and I am ready to get my life back. Monday and Tuesday we go to work as usually. I’m tired and a bit worn out. A couple people comment I look pale and ask how I am feeling. I have told no one at work about my heart problems – just my supervisor.
Wednesday I have off because I have a cardiologist appointment at that office where the cardiologist called me “obese”. It’s all I can think of. I’m so embarrassed and don’t want to see him. I arrive at his office and it’s his partner who sees me. He’s the nicest man on the planet. I was so relieved the other guy was “out”. This cardiologist, Dr. Randolph, has all the files from the ER, and he says, rather matter-of-fact, “I want you to go to Mayo in Rochester, MN for a consult and possible surgery.” HOLY CRAP. Saying just “crap” is no longer sufficient. Surgery?!
Dr Randolph says he will set it all up, but wants me to stay in his office until everything is arranged. By 5pm, after sitting there for 3 hours with my boyfriend, we’re both still stunned. Like deer-in-the-headlights stunned. Dr Randolph returns saying “you have your consult and some tests on Monday and Tuesday next week and possible surgery on Wednesday.”
He advises us to drive, not fly there. He gives us some advice on hotels and other tips. He ups my dose on lasix and says to remain sedentary and calm until I get there – no work, no stress. This sounds impossible.
1) I am NOT allergic to Bomebro
2) I don’t have asthma
3) I don’t have a blood clot
4) I might be out of shape, but that’s not why I can’t climb the stairs at my home.
5) Oh yea, I am a cardiac patient – living in denial is a lovely world until you are jolted into reality.
Hospitals – a place of healing or a place of boredom!
We left Dr Randolph’s office on Wednesday around 5pm, which means it was like 6pm in Florida. My mom should be home from her job. I need to call her and tell her this terrible news. Again, calling mom with bad news, not easy. I never want to upset me mom. I’m always “trying” to protect her. Calling to tell her just felt daunting. I am having problems breathing again. Is this my new “normal” breathing problems, or am I having an panic attack about this? Ok, I need to dial the number and call her. I call my brother instead. I tell him. He is silent. I ask if he is still on the line, I can tell he is stunned. He asks if I told mom yet. I say no, I called you first. He asks if I need him to call her for me, I say no, I can do it. Telling my brother wasn’t that bad. But comparing my relationship to my mom with that of my brother is like apples and oranges! I realize I need to call my mom…but first let me text my best friend, and arrange the cat sitter to take care of my cats while we are away…and let me call my other good friend who helps take care of one of my dogs…and then I made arrangements for my other dog to go to boarding…I can’t procrastinate anymore. I need to call my mom.
“Hi, Mom?” I say hesitantly into the phone
“What’s wrong?” she replies
“I just saw the cardiologist Dr Randolph and he wants me to go to Mayo for a consult and heart surgery, leaving this weekend.” I somehow manage to get all the words out but my voice was quivering and I am starting to get terrified. I start crying for the first time.
“Ok, I will call you back. I am going to buy a ticket to fly in tonight or tomorrow morning.” she rambles on, I can hear how scared she is. Her voice sounds very deliberate. I know that’s a strange word to use to describe a voice, but it was a tone I had never heard before for her.
Wednesday night was a long night. I didn’t get much sleep. I spent a lot of time on the computer, Googling heart valve surgery information. I was researching the doctors I was going to see at Mayo. I told a few more close friends. My voice stoic. I was very matter-of-fact. I didn’t lead on to any fear or concern. I didn’t want others to worry. My mom called and said she was arriving on Saturday. We would leave on Sunday for Mayo. I didn’t tell her that Dr Randolph told me to remain sedentary.
I went to work on Thursday after my Wednesday cardiologist appointment. I know Dr Randolph said not to go, but I needed to get things in order for my possible extended sick leave. Also, I don’t know how to be sedentary. I have a busy life. I have a dozen projects going on at once. I volunteer for my favorite shelters. I manage fundraisers. I have a day job I like – for the first time in years. They rely on me! I have a household full of animals; 6 cats, 2 dogs and 1 boyfriend if you are keeping track.
I get to work on Thursday – got a ride from the hubby. I am sitting at my desk and trying to figure out who the manager is at the moment. There was a bit of a management rearrangement and I have had 4 different managers in just a couple months…so I wasn’t sure who I needed to speak to. I decide I will ask the last person I knew to be my manager…turns out he was still my manager. I told him that I might need a week off or a month. Worst care scenario is I might have heart surgery next week and then I will be out for a month. If I wanted to be completely accurate I would have said, Dr Randolph said if I have heart surgery I will be off a couple months. Yea, I just couldn’t imagine being off work a couple months. I decide to say it will be a month at most. A couple months, phhftts, that’s funny! He says he isn’t sure he can approve that much leave – he’s not a “real manager” just an “acting” and sends me to his manager – a Division Director. Whoa! It’s always a little intimidating for me to walk into a Division Directors office. I realize they are human just like me…but it’s a seniority thing and I am fairly low on the totem pole. I realize I am asking for medical leave and that probably can’t be denied. I tell him my situation and he is more than kind and understanding. He says I can take as much time as I need and tells me to please give my boyfriend his email so he can get an update on my condition. I was touched by his sincerity and concern.
I walk out and go back to my manager and tell him what happened. He is also supportive but is a tad concerned with who will do my work. I can’t really worry about this at the moment. I start feeling pretty bad. Really tired. Exhausted in fact. Trouble breathing again…I go back to my desk, set up the “extended absence message” on my email system and leave for the day. Hubby picks me up and we go home to sulk and sleep and forget about the upcoming events.
The days leading up to getting to Mayo is sort of a blur. I ran some errands, made arrangements for my pets to be cared for while I was away – stocked up on food for them, cleaned the house – not sedentary at all…..then, my mom arrived. We left for Mayo on Sunday morning. I sat in the back seat, my hubby drove…my mom sat in the front seat navigating. Mom and hubby bickered most of the way, I think. I tried sleeping, upright sitting in the back seat…the breathing problems were back. Even with the increased dose of lasix it wasn’t working again. Small shallow breaths, breath, 1, 2, 3. Every time I woke up I heard them bickering.
We arrived at Mayo. Geez this place is big. We check in to a hotel. We grab dinner somewhere inside of a mall that is near the hospital. After dinner it’s straight to bed. In the morning I go to Mayo for my first appointment. It begins; needles, doctors, more needles. Crap.
I know they re-did all the tests that I had done at the ER in Chicago. The first day was all outpatient stuff. The second day was inpatient. I underwent a trans-esophageal echo cardiogram, a cardiac catheterization. Sorry I don’t know the exact technical terms of all these procedures. Oy! So many needles and IV sites. The picture above is me before or after the procedure….waiting or recovering. Actually I think it might be waiting before the procedure. Notice the arm-sleeve to hide the iv sites – otherwise I would need some Xanax. Yes, I can’t look at needles in my skin. I never understood how IV drug users could purposefully stick themselves. I’m getting nauseated reliving this as I write.
I’m lucky to still be alive.
In my first two days at Mayo I met the cardiologist Dr Cetta and the surgeon Dr Dearani. Both wore such nice people. Very patient and willing to answer my hundreds of questions. Mind you I was Googling everything and very well armed with questions.
I woke up from the trans-esophageal echo-cardiogram a bit more out of it than the first time at the Chicago hospital. I also woke up in a different room than where they said I would wake up. The doctors came in to talk to me, my mom, and my boyfriend and I knew something was seriously wrong. They seemed much more serious and less light-hearted than when I went in.
Dr Cetta explained I have an already ruptured aneurysm. If it completely tears I will die. WHAT?! I start losing my breath again. One of my valves is basically not opening/closing anymore and the other is malfunctioning. They ask me what I want, a mechanical valve or animal tissue. He told me the aneurysm would be repaired with a bovine patch, “cow tissue”. I’m vegetarian…this grosses me out. As for the valve, I think mechanical, but the thought of being on medication for the rest of my life is disappointing. So I am torn. I have the night to think about it and in the morning they will ask again, I have to sign some papers with my request.
In the morning I decide on animal tissue. I worry this will make me a bad vegetarian…but promise to donate to either cow or pig sanctuaries to offset this decision. This is when I start to think about karma.
I love animals. I have helped so many animals. I have good karma, right? Why is something so bad happening to me? Who did I wrong? I have a hard time with forgiveness and don’t speak to my biological father’s side of the family. Maybe this is from that bad karma? No, I was never mean to them, quite the opposite, they were mean to me – they have the bad karma not me. Again, why is this happening to me? Is it from all the people I didn’t help who were trying to help animals? I could only do so much. I tried to help as many people as I could. I’m sure a few slipped through the cracks, or got frustrated with my crazy schedule and gave up on me. I couldn’t stop thinking, why is this happening to me.
In conclusion to my thoughts above; “life is not always fair.” I am not sure it had to do with karma after all. I did have a congenital heart defect that was corrected when I was 2, and though we never anticipated the current events it all falls in line with a condition called Shone’s Syndrome. Yes, it’s more common in pediatric patients…and I am 30-something, but you know I never doing anything ordinary. I do things extraordinary and leave it to me to have a rare condition with adult-onset. At least I am in the right place to get it all fixed.
All my research showed that Mayo was the place to go for heart problems. Mayo was #1! I was going to get the best care possible.
Read about it!
The story you have been reading is a memoir based on my experience – not an article for technical information on Shone’s Syndrome. I realize the story is titled as Shone’s Syndrome, but it’s more so because it’s what I had to deal with, not a medical script with all the technical details about the condition. Here is a list of links you can go through for very specific info on Shone’s.
Shone’s Syndrome on Wikipedia
An extremely short description, probably not very helpful.
Shone’s Syndrome on Heart Consult
A longer description, a few more details, but not comprehensive.
A non-profit dedicated to supporting research of Shone’s
A non-profit dedicated to supporting research of Shone’s – dedicated to Christina Capozzi who lost her fight with Shone’s
Technical Medical Journal Article
Interesting statistics, shows how rare this condition is.
Shone’s syndrome diagnosed with echocardiography and confirmed at pathology
A much longer comprehensive description of Shone’s – written for a medical journal so it’s a bit technical.
Covet Point Foundation – infor on Shone’s
A basic definition with a heart diagram explaining Shone’s
…and those male nurses are cute!
When they are prepping you for surgery it’s a bit odd if you haven’t had a major surgery before. The night before and the morning off they want to to bath with a special pink gel “soap” and scrub in a particular way. Then there is the goop they want you to put up your nose. It’s very strange – but consider this a heads up.
Right before the surgery they put some special socks on and the funny looking shower cap. As a woman I didn’t need to shave my chest, but for men this would have been another thing to do….
I was waiting in the room with my mom. This handsome male nurse comes in and gives me a “chill pill”. Have I mentioned that Mayo has a ton of male nurses and they are very good looking. Is it a prerequisite? Nurse Nate says he’ll be my head nurse and then introduces me to another nurse who will be giving my family updates. It’s all a blur.
My cell phone rings. It’s someone who adopted a cat from me- he’s having some problems with one of the cats – “uhm, this isn’t a good time. Can I call you back?” …if I survive, I think to myself. I’m starting to get nervous. Darn this is scary. I start thinking of all that I have done and all that I haven’t done. I never got to skydive. I never saw wild elephants. I never saw a dingo. I didn’t see all 50 states, only saw 36. My list goes on. I try and concentrate on the happiest moment of my life. I hugged a panda. I hugged a real live panda. I hugged a panda bear. I smelled a panda bear, I hugged one. I just keep thinking about this, over and over. Somehow these thoughts calmed me.
They roll me into the surgery room. Brrr it’s cold in here. Handsome nurse Nate agrees and puts some “oven blankets” on me. Oven blankets are blankets that are stored inside an oven. Ooooh soooo warm. Toasty. Hugging a panda. Relax, breath, hugging a panda.Thinking back I was so nervous. These might be my last thoughts, I needed to think about my happiest moment.
I’m trying to look around the room, I sit up a bit. Handsome nurse Nate asks me what’s wrong. Nothing, I reply. I am looking for the heart lung machine (Cardiopulmonary bypass pump). He points to it but it’s covered in so much plastic I can’t really make it out. He slightly pushes my head back down and tells me to relax. I try. Then I think, ‘Ooh, where is the saw?!’ You know the saw they will use to cut me open, that’ll cut through my sternum (Sternum Saw). Handsome nurse Nate tells me it’s wrapped up and he can’t show it to me. But I want to see it. No he says. I can tell he is getting a bit annoyed. He tells me to take a deep breath as he puts a plastic mask over my mouth. I breath, I think, hugging a panda.
I wake up and I see my gown is off. My chest is exposed. I feel some cold liquid being smeared on my chest. I raise my head to see and say “OH”…and I hear some talking and I am out. Thinking back I think they were putting on some iodine or something like that. I didn’t get to think “hugging panda” one last time. I was out, fast.
A dream or the other-side?
I was raised Catholic – but some time around high school I started questioning this faith. I abandoned this religion after graduating from a private all girls catholic school. I hold with me the belief in a higher power, but have a problem with organized religion. I have a problem with open displays of faith which I believe to be a very personal thing. I get highly annoyed by those who try and push their faith on me.
While I was having surgery I experienced the following – I am not saying this is the other-side, nor am I saying it’s a dream. I really and truly have no idea what happened….but this is what I remember:
I’m in a park. Green grass everywhere. Very pretty. I see a black cat running up to me. It’s my Amigo – my black cat that passed away 6 months earlier. He runs towards me and leaps into my arms. He feels exactly the same. He was always a solid cat from his years on the streets. I hold him tight, I am so happy to see him. I cry a little bit. I hold him, hugging him, kissing him. He’s rubbing his cheek on my face. I am so happy to see him. He is so happy to see me. This happiness is like I’ve never felt before.
Amigo jumps out of my arms, I see him walk over to a park bench and sit next to an old man. Wait, is that Grandpa?! “Grandpa, GRANDPA!!?” I shout. Amigo jumps up on the park bench and curls up to go asleep next to Grandpa. “Grandpa!” – I keep calling him. He doesn’t looks directly at me, he motions with his hand for me to go away. “Grandpa, no, Grandpa it’s me!” Why doesn’t Grandpa want to see me. Why is he telling me to go away. This hurts. All the happiness of seeing Amigo has gone away. Why won’t my Grandpa come to me? Why is he telling me to go away? I can’t move towards him. I can’t run up to him and hug him. I’m stuck there watching him motion for me to go away. Flicking his hand to me, motioning me to go away. He had a serious face on. I was so sad, so confused. I look at Amigo, laying peacefully asleep next to him, and ZAP, I am gone. I am not there anymore…..
I wake up a couple hours after surgery. Tick Tick Tick. I hear ticking….
2 mechanical heart valves later…
What’s that ticking noise?
First I hear a lot of ticking. Tick tick tick tick. My goodness what is that loud ticking. I start waking up. I’m forming thoughts, I’m alive, what’s that ticking noise. Wait, I just had heart surgery, I’M ALIVE. I’M THINKING! Tick tick tick. Oh my goodness that noise is driving me crazy. I open my eyes. I see the nurse sitting next to me, but she’s looking at the computer screen and not at me. How can I get her attention. I can’t speak. I have something in my mouth. Tick tick tick. I notice the clock on the wall. I can’t speak. I need her to remove that clock. It’s too loud. Tick tick tick. I’m getting annoyed, more like agitated. I try to move but can’t. I think I am strapped down. I’m getting hot. I hear a bunch of beeps and buzzers. The nurse looks at me. FINALLY! She explains, I am out of surgery. I am in the ICU. I have a breathing tube in and I can not talk, to not even try.
She unstraps one hand. She gives me a pencil and paper. I scribble, “what’s ticking?” she said it was my heart. I raised my eyebrows. Why is my heart “ticking” I think to myself? As if she knows what I am thinking she replies “you got two mechanical valves.” WHAT?! In a millisecond thoughts rush through my brain. Why did I get two mechanical valves, I thought only one was failing. Why did I get mechanical valves, I signed a paper saying I wanted one animal tissue valve. Tears start rolling down my cheeks. I will be on Coumadin for the rest of my life and will have to hear this damn ticking noise forever. This sucks. I scribble “where’s my family?” – If you saw what I scribbled, it is amazing she figured out what I wrote. She said they were at the hotel. I wrote call them. She said it’s 1am. I wrote I don’t care. I’m getting annoyed with her already.
At this point I wasn’t a happy camper, I wasn’t feeling any pain yet either.
My mom, brother and boyfriend come in to the room. I am so happy to see them, but I can’t talk. I can’t move, I can’t do anything but stare at them. They are all crying. They all have this look of fear and concern on their face. Do they not see that I am alive?! They each take turns rubbing my legs, telling me I will be ok. It’s a really surreal experience because I am looking at them and it’s as if they are looking at me and not really seeing that I am awake. I start getting agitated again, the nurse tells them to leave. This nurse is really starting to piss me off. Why did she kick my family out?! Before they left my boyfriend put my cellphone in my hand. I love him. He knows my attachment to my cellphone is unhealthy, but he leaves it with me.
I motion to write. I write asking her to take the breathing tube out. She says no. I write I am thirsty. She says I can have some ice chips when they remove the breathing tube. Back to square one. When will the breathing tube come out? I am feeling anxious. She gives me something to relax. I fall asleep. I wake up an hour later. They are going to remove the breathing tube. They give me instructions how to breath when it’s being removed.
The breathing tube is removed and the nurse gives me some ice chips. She tells me not to speak. I nod ok. A few seconds later I ask “when can I go home?” She laughs and says you are in the ICU. After a couple days here you go into a regular room, after a week there then maybe you can go home if you are doing well. I do the math, that’s like 10 days from now. Hell no I am not staying in the hospital 10 days. Then she tells me to be quiet, no talking. I give her glaring mean eyes. I really dislike this lady. In my head I start calling her Evil Nurse.
I am in the hospital, there are needles all over my arms and one on my neck. I don’t like nurses or doctors and this particular nurse is starting to irritate me. I start talking, even though I am suppose to be quiet. I have lots of questions. Among them; what do I need to do to get out of the ICU and away from this nurse. I may have left off that last part. She told me I have to sit in this chair (pointing to my right) for 5 hours. Ok, put me in the chair! She says not until the morning. My goodness she is really delaying my progress. I am ready for the chair!
As I contemplate and put a plan together in my head. Plan: how soon can I get out of the hospital? I start to feel pain. Ohno. This hurts. Evil nurse hands me a button and says to push it every few minutes and it will release Fentanyl and that will help with the pain. Alright. I have it timed that it will release some meds every 7.5 minutes. I am hot. I am real hot. I ask Evil Nurse to please take my gown off. She says, “you’ll be naked.” I reply, “so?” She says no. She does uncover my legs – wait a minute, what are those knee-high socks? oh, yea, I remember they put those on me right before surgery. Ugh, take those off I am so hot. The answer is no. Ice chips please. I guzzle down a cup and ask for more. The answer is no. What time can my family come back. The answer is take a nap. I decide to surf the internet on my phone….but am suddenly nauseous. Reading made me nauseous. I manage to send out a few “i’m alive” text messages, along with some incoherent text messages and I fall asleep, somehow managing to continue to push the pain med button.
pain, nausea, don’t ask me to eat
The morning finally arrives. My family comes to visit me. I am fully awake, and talking. I am in pain though and sort of fall into a drug-induced stutter, maybe dozing off for a couple minutes every few minutes. I am so happy to see them though. I share with them how upset I am that they gave me mechanical valves. I learn that the surgery took 7 hours when it was only suppose to take 3-4 hours. My family was so relieved to see me awake and alert. They decided to go eat breakfast. Food, oh that sounds disgusting. The nausea begins.
I kept bothering Evil Nurse as to when I can get in the chair. She finally relented and put me in the chair while my family was out. It was during this process I realized all the tubes coming out of my body. I looked down my gown and there were plastic tubes coming out of my chest! I looked further down and realized I have a urinary catheter in. Ewwww.
Dr Cetta came to visit and was shocked to see me in the chair already. I told him I was ready to go home. I might have been highly drugged at this point. I do recall him telling me about the complications. I forget to tell him I didn’t want mechanical valves. Whoa. I start processing all this news.
My family comes back and Dr Dearani the surgeon comes in. Now I remember to tell him, but first I tell him I am mad at him. He replies, “you’re alive, what could you possibly made at me for?”. Well, he has a good point…but I am mad because you gave me two mechanical valves. Then he explained that the mitral valve had severe stenosis and regurgitation and was not functioning and the aortic valve which resembles a Mercedes symbol in shape was deformed and there were only 2-leafs (bicuspid) instead of three and it’s amazing it survived this long in that condition. Really? I ran a marathon in 2000, I had no problems then. I think back to all the things I’ve done in my life and how it’s lasted this long. I take it as a blessing. In the end, I thanked Dr Dearani for saving my life, even if I have to be on Coumadin forever.
Want to go for a walk?
My first day in my private room, within a couple hours of my arrival, the nurse came in and said, “Are you ready for a walk?”
“Excuse me”, I say. I motion with my head, looking at all the tubes and IVs. She says, “yep, it’s complicated but it can be done”.
Ugh, I think. This won’t be fun. Mind you I totally want to do whatever it takes to get out of the hospital as soon as possible, but when you have tubes hanging out of your chest, and IV’s in your arms it’s uncomfortable to move.
I have no choice really. So I say ok let’s go for a walk.
She helps me sit up and on the edge of the bed. I wait while she wrangles all the draining tubes and their perspective containers. She tells me to wait a minute she forgot something. I wait. She returns with a walker. A WALKER! “What’s that for?”, I ask. I know what it’s for, just wasn’t sure why she was bringing it to me. She says I will need it and she can hang the drainage containers on it. Every time I have to look at those containers I get nauseated – not sure if it’s knowing what they are or the gross contents – either way I hate looking at them and now they are being attached to this walker I need to use to go from my walk.
The nurse helps me go for a walk – it wasn’t that bad at all. She tells me I have to do this a few times a day. Oy! Ok, no complaints from me – I complain inside my head but I never voice these complaints because I don’t want to seem uncooperative nor would I want anyone to say I need to stay in the hospital longer. Like a good patient I took my daily walks.
The only thing I did complain about – daily – were all the blood draws. They were taking blood from me all the time. I was never happy and always asked, “What are you taking blood for now?”. I also questioned all the medications they were giving me too. “What’s this for?”
The nausea was so bad at this point. Everyone kept asking me to eat. The thought of food made me so nauseous, the smell would put me in a tailspin to vomit. It was about the second day in the private room when they start asking if you need to poop. I don’t usually discuss these things. The nurse must have asked me every couple hours…what the heck! Why are you so concerned? Well, you need everything to go back to “normal” before they release you. Considering I hadn’t eaten anything in 3 days I wasn’t sure how I would “go”….that and food made me so nauseous. The saving grace with my nausea was this little “smelling stick”. Oh how I loved it. It really helped me combat the nausea…going poop was a totally different problem.
At one point I needed a blood transfusion. Ohhhh how gross! I started to cry when they said I needed this. I hate having my blood drawn, but imagine them putting someone else’s blood inside you! I wasn’t even concerned about the safety of it – I mean it’s the Mayo Clinic, I am pretty sure they test their blood and it’s safe – it’s just the idea that SOMEONE ELSE’S BLOOD is being injected into my body. So gross. I did find out their blood bank is actually from employees, not the public. Who cares, it’s someone else’s blood! As you can see I find this extremely gross…..but alas, I felt better afterwards.
Day four they removed my drainage tubes. I was very excited to have these removed. After surgery you are very “chest congested” and you have to cough it out – and coughing hurts like you wouldn’t believe after heart surgery. Coughing all day long, it was a big pain. They give you a nice heart pillow to squeeze and hold to your chest when you cough., Yes it helps, but it still hurts. And then you notice when you cough the fluids start draining from your chest and into the drainage tubes. Oh so gross. I thought they would knock me out when they removed the chest tubes – no, I was completely awake and it was a surreal experience – sort of out of a horror movie! The physician assistant explained how it would be done and the way I need to breath when he’s pulling them out – exhaling only. I tell him I can’t watch. He says that’s fine. He coaches me through it. I end up watching, it’s hard not to, I mean, they are pulling tubes out of my chest. That had to be the grossed thing I have every seen in my life. The tubes were almost a foot long – he pulled them out, I exhaled, it literally took my breath away – I had a sharp pain in my arm, I screamed. He put the bloody tubes is a giant red bio-hazard bag. He made sure my arm was ok, he said the tube might have hit a nerve. I told him my arm was going to fall off. I kept looking at it expected it to fall off. It hurt that much. It went numb, then tingly. He waited with me, had me move it around, massaged it a bit. It felt better but a nerve was definitely aggravated.
I ask if he was going to remove the electric wires. Yes, I had plastic tubes and electric wires as well! He said the wires come out tomorrow, The wires help with the hearts electrical activity and pacing after surgery.They are called “Epicardial Wire Electrodes” – even that sounds gross.
My arm continues to bother me, but I don’t complain as I am hoping to get out of the hospital the next day.
The next day they come to remove the epicardial wire electrodes – very similar experience to having the drainage tubes removed. Gross bloody wires coming out of my body as I exhale. I didn’t have a sharp pain in my arm again, thankfully.
Am I going home? No. I had to wait one more day, Day 6 I went home. Some funny stuff with my blood caused the delay – it really wasn’t a delay, I mean 6 days after heart surgery I was going home! The “delay” wasn’t something I could have prevented anyhow.
I was discharged from the hospital but told I needed to stay in Rochester, MN for 24 hours after discharge and I had doctor appointments the next day, so I couldn’t really go home. I had an uncomfortable night in the hotel room. I can’t believe I am going to say the hospital bed was comfortable. I got use to sleeping on it.
Doctor appointments, check.
Lab appointment , check.
Time to drive home, check!
Nine days since I arrived at the Mayo Clinic, 7 days after surgery and I was headed home.
It’s basically “working out”
Four weeks after surgery I have to start cardiac rehabilitation. I did phase one of cardiac rehab while still in the hospital and when I was home recovering. My mom helped me with these exercises, which were basically mobility exercises. They aren’t easy, and they aren’t fun. They are very basic moves and motions with your arms, like lifting both arms over your head – it’s nearly impossible. Everything hurts for the first couple weeks after surgery.
The biggest pain or discomfort I had was the sternum pain. The sternum is an inch wide bone and they sawed it in half and then put it back together using titanium twisting ties. When you move around to much you feel it shifting. It is the most uncomfortable feeling. Another discomfort was when the very small hairs you have on your chest start growing back. Ouch! They say it’s a lot worse for men. I can’t even imagine.
Every morning when you first wake up you start to dread sitting up. The motion to sit up made me nauseous immediately, but the pain to sit up was yet another obstacle, it didn’t last long, but it hurt.
Usually people start cardiac rehab about 6 weeks after surgery, but you see I am ambitious. I started 4 weeks after surgery. I needed to get this over with so I could go back to my life.
I went back to work 18 days after surgery, that’s a full week and a half before rehab. I couldn’t sit at home. You see, when we were driving back from Mayo, one of my dogs had bloat. About a week later he died. I couldn’t sit at home without him there. I needed to get out of the house. I went back to work. I only went back part-time. I was completely out of it, and no one really gave me much work to do. I just stumbled my way through the day.
Since I went back to work part-time I was home on the other days. I made a plea on Facebook for friends to please come visit me and keep me busy. Cardiac depression was sinking in, and it didn’t help I was already depressed about one of my dogs dying. Friends and fruit baskets started coming. Part of the cardiac depression was related to not being able to go back to my regular life 100%. Not being able to drive! Needing help getting in and out of the shower, just little things like that.
I started rehab at Northwestern Memorial Hospital. It wasn’t that bad. I mean, it’s basically working out. Ugh. I did my 12 weeks of rehab, 3 days a week, 1.5 hours at a time. It consisted of warming up stretches, warming up exercising, exercising, cooling down, and then a medical lecture on various topics such as: cardiac procedures, low sodium diets, sex…Yes Sex! The people and staff were so very nice. As nice as can be actually, but it didn’t make working out any easier. I walked on the treadmill, started running a bit too. About 8 weeks into it they want you to start doing weight training, very light weights, but never the less….I really didn’t like that. I would try and wiggle my way out with excuses all the time.
I completed rehab and agreed to join a gym – they recommend it and even discuss it with you in a “counseling session”. I join the UIC gym, not too far from my home.
254 beats per minute, ut-oh.
One week after completing cardiac rehab, it was a Monday, and I was at work as usual. It was Halloween and I stopped to buy some churros to take to work as a treat for my co-workers. I get to work, I sit down at my computer, I log in and then suddenly my heart starts racing. I started feeling hot, slightly light headed. I stand up, walk to the window to catch my breath, the air is cooler by the window. My heart is still racing. My cell phone alarm reminder beeps, I have a meeting. I take the churros upstairs to my meeting. My heart is still racing. I am the first one in the conference room. I decide to call my cardiologist. I have his cell phone number and this is starting to seem more and more like an emergency. My heart is RACING! It’s never beat this fast before even when I was exercising, it’s really loud too – remember I have mechanical valves – TICK TICK TICK TICK.
I am on the phone with my cardiologist. He gives me some instructions; “hold your breath and bear down pushing your stomach out.” I do it. No change. He says, “massage your carotid artery – neck area – in a circular motion, with pressure.” No change. He asks me to take my pulse. I tell him I can’t. He asks, “you do not know how to take your pulse?” I reply I do know how but it’s beating too fast. He asks where I am, I say work. He says go to Northwestern Memorial Hospital and that he will let them know you are on your way.
I walk into the meeting room and tell my supervisor I am not feeling well and am going to the hospital. I tell everyone to enjoy the churros. At this point, I have to go back downstairs to my desk, to grab my coat and bag. I didn’t log off my computer, I figured I’d be right back. I realize I have no money to take a cab. I walk a block to the cash station, then walk around the block to catch a cab going in the right direction. All the while my heart is racing, and I am having shortness of breath and dizzy spells. I get in the cab and tell him to take me to Northwestern Memorial Hospital ER. The cab drivers says, “ohh, someone is not feeling well?” I reply, yes, me! He drives there, fast. I sat in the back seat, trying to remain calm, but feeling very hot, sweaty, dizzy, short of breath and like I may pass out. I focus on my cell phone and answer a few emails, one from my brother and on from my mom.
My boyfriend is in California on business travel. It’s 8:30am in Chicago so it’s way early in California, I decide not to call him. I get to the ER, I walk in and give my name, they were already expecting me and had called my doctor back because they hadn’t received the ambulance call. Ambulance? Who said I was going to take an ambulance! I guess my cardiologist assumed I would. Ha! Shows how well he knows me, never would I want that kind of drama/attention at work.
At this point I knew something was seriously wrong. The nurses start to undress me. Usually they give you a gown and ask you to change, the nurse literally was unbuckling my bra and putting the ECG stickers all over my body. I ask what’s going on. They say I am in a very dangerous heart rhythm. Wow, this must be serious. In less than a minute, before I was dressed in the gown there were 10 people in my room. They tell me they are going to give me some adenosine and it will feel weird but it should help bring my heart rate down. My heart rate was 254 bpm at it’s peak. They inject the medicine, it has no affect. They give me another dose – it only bring it down to 216 bpm. They tell me they are going to cardiovert me. Cardiovert? What’s that? They explain they are going to use electricity to bring my heart rate back into a normal rhythm. Wait, is that the same as the paddles? Yes, it is.
I ask if I can call my boyfriend, they say there is no time this is very serious and my heart may just stop. They ask for his phone number. I think, this will be the worst phone call he has ever received. My heart has been in this dangerous rhythm for over 30 minutes. I never lost consciousness. They are all amazed but said time is of the essence. They anesthetize me, I’m out. They cardiovert me. I wake up later feeling tingly all over. You know that feeling when your leg or arm falls asleep, well, that times 10. Whoa!
The nurse says it took 2 max jolts to get my heart back into a “normal sinus rhythm”. A couple hours later, they move me to the ICU.
More doctors, more needles, I feel as if I am back to square one. I just finished cardiac rehab the week before and here I am back in the hospital with heart problems, again.
My brother had come to visit me while I was still in the ER, and my friend Steph came to visit while I was in ICU. By 10pm that evening my boyfriend was by my side in the hospital. He looked pale, completely frightened. He explained the awful phone call. He said the nurse spoke so slowly, he was just shouting to her “Is she still alive?!” He was terrified, the nurse said I was in a very serious condition. He rushed home.
I spent 5 days in the hospital! 5 days!! When I had heart surgery I was only in there for 6. Oy, you can imagine my aggravation. First they wanted to “observe me,” then they had to get the coumadin levels down. Then they started all the test. They did what is called an “EP study”. They did a cardiac catherization, and tried to re-enact an elevated heart rate to see where in the heart the problems was. I was only slightly sedated. I recall talking to the nurse about lasik eye surgery. I felt my heart start racing, but not nearly as fast as when I arrived at the hospital. They only took it up to 175 bpm or so. They were thinking that some scar tissue may have caused tachycardia event and the would cauterize that tissue – but as it turns out it’s in a very precarious location and they could damage the electrical system in the heart if they cauterized there. They opt to give me medication.
At they end of all the test, day 4, they explain I will have to give medication a try to keep my heart is a normal rhythm. If the meds don’t work I will be getting a pacemaker. On Day 5 I am begging to go home. The tests are done, why do I have to stay here?!
At 3pm the nurse comes in and say I will be discharged but I need to give my self injections twice a day for the next week. WHAT THE……!!!!
Ok, if it means I get discharged I will figure out how to give myself lovenox injected. They make me watch a video and say I will have to give myself the first one, with nurse supervision, before I leave. I immediately feel light-headed. How will I do this? I hate needles. I tell myself buckle up buttercup you just have to do it.
It was awful, and I have no idea how I didn’t pass out. I feigned courage. I should get an Oscar for this performance, acting like it was no big deal. Now, I am ready to go home.
Burn Marks Heal
…but the psyche took a beating.
When they cardioverted me, they put this sticky pads on me, one on my chest, one on my back. They send 200+ joules of electricity through me. You know, when you see on tv that they “paddle” someone, they wake up feeling perfectly fine. Well, I did feel better, though tingly…but I also had burn marks!!! They gave me some benadryl cream to rub on the burns marks.
In the days and weeks after being released from the hospital I really started to think I suffered from a form of PTSD – post traumatic stress syndrome. I was terrified this could happen again, at any moment. I mean, I had just finished cardiac rehab and really felt “cured”. I figured I was completely done with the cardiac drama – but apparently I wasn’t. Mondays scared me too. This happened on a Monday and I have read about the theory that most heart attacks, cardiac arrests and cardiac events happen on Mondays. Every little palpitation, every twinge, tingle or hiccup I would freeze, is it happening again?
As time passes I feel better and more secure with my heart, but I no longer think I am free and clear. I know anything can happen at at moment and I need to be cautious. I need to be in tuned with my body, listen and not blow off any symptoms I might be having.
I’m a different person after all of this. I no longer feel invincible – well, actually I sort of still do but my ego is much more in check. And with every tick I hear of my heart I remember everything I went through.
Physical Fitness Achievements
In June of 2013 I participated in a 3-day 150 mile ride for the Lung Association. I trained for months and tried to be as prepared as possible. The day before my ride I had an appointment with my cardiologist. I had gotten his approval for the ride months ago, but he wanted me to see him right before the ride.
That day was as normal day as any. I biked to his office from my home, 9 miles. Easy peasy ride considering I was logging about 30-40 miles average a day. As I sit in his office and they do the all too routine EKG, I suddenly had a heart hiccup. A heart hiccup, what’s that you ask? Well, I call them “heart hiccups”, but the technical term would be ventricular tachycardia. I have a handful of these hiccups daily. They last 1/4 to 1/8 of a second! I mentioned them to my cardiologist on one of my previous appointments but he didn’t seem concerned since they don’t happen at a specific time, they last less than one second and I had no adverse affects from them (not lightheaded, not dizzy, no shortness of breath, nothing). Well, the EKG caught one and he had a ton of questions for me after that and then asked me to wear a Holter Monitor for the first day of my ride. Oh what fun! At least he didn’t say no to doing the ride. And he wasn’t concerned about the hiccup but wanted to see how many I was having, etc.
Well, I wasn’t happy about having to wear it, but it didn’t get in the way and I hardly noticed it. The ride was difficult. I trained in Chicago, on the lakefront path and in the gym taking back-to-back spin classes. I had never ridden my bike on a country rode. The ride started in Crystal Lake, IL and we rode north to Lake Geneva, WI. I will happily admit that I had to walk a few hills. Hey, at least I didn’t give up and get in the support wagon!! So, I walked a few hills, but I crossed the finish line on my bike! I actually did it!!! I was sooo proud. 50 miles a day. 50 miles is a lot!!!
This is a picture I took on the first day. Actually, it’s the only picture I took. I was born and raised in Chicago, and spent many summers on a farm in Humacao, Puerto Rico….but midwest farmland is quite beautiful. On my ride I saw; chipmunks, a bald eagle, barn kittens and sadly way too many types of roadkill. I rode with a pack of cyclist at the very beginning of the ride and then they smoked me. I was left with nothing but the sound of birds chirping and my heart valves ticking. No seriously, it was that quiet, I heard them! Well, I actually always hear them, but I heard them quite well when I was all alone on these country roads.
The ride was a fabulous experience. I am so proud of myself for completing it.
Fast forward to the results, please.
The results came back showing I have lots of “heart hiccups” but none severe, or serious enough to warrant any further testing. It’s just a good baseline reading to see how often, how prolonged they are. Good cardiac news – imagine that?!
Hmm, been thinking about this for a while. I really am not sure. I’ve sorta taken a liking to this physical fitness stuff. Funny enough it’s a similar feeling to when I was training for the Chicago Marathon in 2000 and I sorta liked that too. Oh geez. No, no, no, I have no interest in running a marathon. But I do want to set some other sort of fitness goal….