Aortic dissection, aortic aneurysm - The aorta - Life after an aortic dissection
There is no such thing as a long story short when it comes to an aortic dissection is there?
Just before Thanksgiving 2004, I couldn't seem to shake a cough that mainly felt like pressure in my chest. Being a preschool teacher, I was not a stranger to bronchitis and pneumonia. After talking with my sister, she convinced me to go to urgent care where they did a chest xray just to make sure it wasn't pneumonia. I left with a prescription and what he thought "most likely" was a bronchitis of some sort.
The next day, the urgent care doctor calls, tries to explain what he thinks he saw, but could be mistaken and wants to talk to my MD. A week later I had a catscan which only took 5 minutes, but then I didn't get to leave until I saw my MD. I knew that wasn't a good sign, but had no idea how bad a sign it was. My MD asked me to sit, patted me on the shoulder and progressed to explain that I have a dissected abdominal aortic aneurysm and asked me if I remember having any severe chest pain recently?
Having just turned 39, always physically active, ate well, had 4 children with no complications and no blood pressure issues, no heart disease in the family, etc., nothing came to mind. He sent me home telling me to do nothing - no activity - until I saw a vascular surgeon which he set up an appt. with that Monday for me. Nothing against the surgeon (except the 400 plus dollars to walk in the door for nothing!), but when he finally came into the room (thank God my cousin was with to take notes and hear what maybe I would miss or misinterpret), he proceeded to ask me why I was there. (Really? that's why I am here is for you to tell me why I'm here!). I told him my MD set up the appt and said he had sent my catscan results etc., over prior to my appt with him. Within 5 minutes, I was out the door, with the vascular surgeon telling me to get another scan in 6 months to a year as he didn't have any of the info - no scan results, so I should just go on with my life.
My cousin and I stopped at the Cheesecake factory after the appt as both of us were confused at the "blow off" attitude the surgeon had had and she encouraged me to get another opinion as my MD had been extremely concerned to the point of telling me not to lift anything and to do nothing stressful. Again - thank God my cousin was with to vouch for this! Always have someone with you when you go to appts, as being the person going through the event, we don't always hear things the right way and your back-up can help clarify and even ask questions that for some reason freeze up in your own brain while you sit there with the doctor.
Luckily a previous client of mine worked at Abbott Northwestern and got a name of a thoracic surgeon for me to get a second opinion. My husband came with me for the appt, and this surgeon Dr. Eales was phenomenal. He explained what I had, told me the concerns with what I have, had suggestions (like going on a blood pressure medication to help prevent the dissection reopening so I should contact my MD who would monitor that), told me no weight lifting, push mowing, shoveling etc., not to do anything that would cause me to hold my breath or bare down ever again (I'm so glad I had had my 4 kids as that had always been a dream of mine since I was a kid). He too then asked me of any memory of a painful chest episode as I was quite young to have this condition. It finally dawned on me that the previous fall (October 2003), we had taken a family trip to Wisconsin Dells. We were having a quick lunch at McDonald's in the van before we were to go horse back riding. I suddenly couldn't move as I felt this pressure in my chest travel from my sternum to my belly button. I could hardly breath so I thought I was having an anxiety attack. I remember wanting to grab the McDonald's bag to breath into, but my body wouldn't move. I just sat there looking at my husband, trying to breath through it. I thought it only lasted a few minutes, but he remembers it lasting at least 10 to 15 minutes. I remember envisioning a tearing experience as this pressure traveled downward, and then it was gone. I was able to breath again and off we went horseback riding. We were on a much needed family vacation and I wasn't going to ruin that by having to return to Minnesota for what I considered an anxiety attack. I only contacted my MD when I got home because I ended up having blood in my urine (never had in my life before so figured I should probably check that out). I thought maybe it was a bladder infection (which was not common for me) - so he put me on meds for it but we did no other research.
In hind sight, life seemed harder after that trip - everything took more energy even trying to keep up with all my preschool kids and my emotions were all over the place, but I just didn't know why, until my catscan results. Then it all made sense.
After this phenomenal surgeon visit (which by the way, I don't remember receiving a medical bill for?) I contacted my MD about his suggestions. My MD agreed with the heart meds/blood pressure meds recommendation, but suggested waiting until after Christmas as the side effects might ruin my holiday since they could make you tired (understatement to say the least), but I should have taken him up on the anxiety pill suggestion though. I just wasn't one to want to pop a pill. I thought I could handle it. I was only 39 for gosh sakes!
After some obvious panic attacks, I got through Christmas and enjoyed every second of it with the looming amazement of what I had survived according to what my MD had said.
Then, December 28th, 2004 happened (barely a month after my chest xray). I woke after midnite, with waves of heat radiating down my arms. Not painful, but regular, kind of like contraction waves when going into labor. I shifted, walked around, drank water, figured it was anxiety, would doze off, but would be woken by the waves of heat. I woke my husband, told him I needed to go to the ER, that something just wasn't right. (God knows why) but I took a shower, and even painted my toenails red (I'm just not one of those people, but for some reason, I needed to do it). I had called my sister to come stay with my kids as it was like 3am. By then, my body had kicked into adrenaline mode and I was shaking, on top of the radiating heat waves down my arms. No chest pain, just an oddness feeling.
My sister settled in, and I kissed my kids good-bye while they were still asleep in their beds. I would have woke them if I had only known how much my life was going to change over the next hours, weeks, months, and years. This is the hard part. This is the emotional part still to this day - the tears still just flood, even as I write this now. Hopefully cathartic; you'd think 6 years would lighten the emotions, but bam there they are as I swallow hard.
By the time we reached Fairview Southdale hospital ER (closer to my house than Abbott Northwestern), I had some back discomfort, but didn't know if it was just from my body shaking. That phenomenal Abbott surgeon had told me before we left our visit, that if at anytime I felt odd, to not hesitate, but go directly to the ER as no doctor office is equipped to handle a bursting aneurysm. He had told me to let them know what I had, because the heart attack tests they would run I would pass (since it wasn't a heart attack) and they would send me home. Thank God I remembered that as I checked into the ER as my husband went to park the car.
They took me back fairly quickly having told them my situation and if I recall, we had contacted my MD and he might have told them I was coming.
The ER did an EKG which showed normal. Then gave me an iv of something that helped decrease the shaking while I waited for a catscan. All the time there, I planned on returning home that early morning, that we figured it was just anxiety and I told my husband I should cancel preschool for the day. He told me to not worry about it, my sister could take care of it (stupid unimportant crap that we think is important!).
The catscan was reviewed by the on-call vascular surgeons and that was it. They thought they saw a leak in my descending thoracic aorta and they would have to operate. I couldn't leave. I had to go to the bathroom, but they wouldn't even let me walk to the bathroom - they wheeled me on the ER bed to the bathroom so I could go before they did the heart ultrasound to make sure it could handle the surgery.
Then I freaked out that the surgeon would end up being the one I saw that blew me off not a month prior. I didn't want him. I tried calling Abbott to talk to the surgeon I had seen there, but was told he was on vacation. Like I was going to be let go from Fairview -- but your mind just doesn't work right when your adrenaline is rushing through your body.
I tried not to cry, but it was my only release. My blood pressure was starting to rise, which they didn't want to have happen, so they did what they could to keep me grounded. Then the surgeon came in, and thank God it wasn't who I thought it was going to be. I later found out that my surgeon was the top. I was in the best hands. My husband recalls asking Dr. Northrup (now retired from surgery at Fairview) how many surgeries like this he had done before, only to feel (unneccessarily)embarrassed after finding out how phenomenally skilled he was, but Northrup reassured my husband he would do his best. It's important to ask question and it's your right to ask, and I was blessed to have Northrup as the on-call surgeon that day.
I was given the list of scenarios - could die, could live, could have kidney failure, could be paralyzed and so on and so on. I know they have to be upfront, but all I wanted to do was go home. Were they sure? Had they read the scan right? They said there was no possibility to be sure unless they went in surgically. I didn't have any options.
My husband allowed me to call my sister and one of my preschool parents to tell her I wouldn't be working that day as I needed my sister to get my kids up to the hospital so I could see them, to hug them possibly for the last time. I was angry, scared, frustrated, sad, and the list of emotions went on and on. (wow, 6 years later and still so vivid in my mind and heart!)
In my gut, I didn't feel like it was my time yet. I was determined to survive, and that is what I held on to.
They gave me some kind of sedative to help me relax as they wanted to keep my blood pressure down. I was being wheeled to the surgery prep area, but I needed to see my kids. I just remember needing to see them and then just by chance there my sister was in the hallway with my kids as they were wheeling me down the hallway. I remember seeing them fuzzily and mumbling something, the drugs were taking affect (this is so hard - even still - even though I know I'm still here and so thankful to be). My kids were 4,7,10, and 12 at the time. I was only 39 ---- this doesn't happen when you are 39. I wanted to raise my kids. I wanted to go home and just be. I am there Mom!!!!
I remember waking up to wanting to pull that throat tube out - it was choking me, making me gag. I heard voices, but couldn't see anyone and then I could feel the tube slide out and I could breath without gagging. And then I was out again.
I woke up in the ICU in a room that was dark, and I could hear those monitors beeping. I would fade in and out as the blood pressure cuff would tighten like clock work and then the nurse kept measuring where my arms were at height wise. I remember thinking she was a Kovorkian follower and was going to put me out of my misery. There wasn't anything they could do for me I thought. I couldn't move. I must be paralyzed. I was screaming inside my head in between fading in and out. I tried to ask her what she was doing and I think she tried to tell me, but I couldn't understand. Thank God my sister came in. I told her the nurse was trying to kill me. She told me she would talk to the nurse (I can only laugh about it now of course). She did talk to the nurse and explained my concerns and then my sister talked to me and told me the nurse wasn't and so the nurse tried to explain everything she was doing as she was doing it - they needed to keep my arms a certain height above my heart due to the surgery. I remember talking to the nurse quite a bit - it was her birthday and here she was working with me - taking care of me. Later, I felt bad that I thought she was trying to kill me on her birthday. (I had so many great faceless nurses that attended to me in ICU and throughout my whole hospital stay.) I truly don't think they get the credit they deserve.
Then Dr. Northrup came in and explained what he had to do. I asked him what the box was up by my heart. He told me it was a novacaine ball because he had to remove some ribs. I remember laughing thinking he was joking.
He had to do a Thoracotomy to get to my descending thoracic aorta (a surgery they often have to do for lung cancer patients - I remember being glad I wasn't a smoker). They removed the left rib just along my bra line, skipped a rib, and removed the next rib down. They left the sheething, hoping that it would provide some protection from pain later on. (If it actually has helped, I would have hated to find out what the pain would have been like without it!). The surgery had lasted over 12 hours and I had had countless bags of blood replaced. I had incisions down by my upper thighs due to being put on bypass during the surgery and after surgery I guess I was huge from all the fluids they had to pump into me. My husband said noone would have recognized me -- (good thing I didn't have a mirror) - but I couldn't move anyway so I wasn't going anywhere. The down side was, the surgery was already too extensive to fix the original abdominal dissected area -- so I still have that. They can't tell me if there for sure was a leak, as once they started surgery, there was already a lot of blood, and they couldn't take the risk if there wasn't one; they just couldn't be 100 percent sure.
I was physically fit going into this surgery, but in just one day, it was as if I had been hit by a semi. When they wanted me to get up and walk, I thought they were totally nuts. I remember how hard it was. It was so tiring, just walking from one room to another. I know they have to make you move, but my drugged up brain and body was not in an agreeable state of mind. I think they tricked me by saying that they could move me to my new room, but they didn't have a chair yet, and well, it's just right next door. NOTTTTTTT!!! It felt like miles away - but when you are barely shuffeling your feet, well, let's just say I wasn't sprinting to my next room. I do have to admit - it did feel good to walk AFTER I got back to my bed --- it's tough to get yourself motivated to walk - but you do it, again, and again, and again --- thank God our bodies are miraculous healers on their own.
As for the ribs, or lack of the two I should say ---- I have had 4 children and have never ever experienced pain like missing my two ribs (and my deliveries were not pain free!!!!!). After the novacaine ball was removed, I didn't want to even shift. I was terrified of coughing, sneezing, laughing; I couldn't lie flat, I couldn't lay on my sides, I could barely sit up as the muscles in my back had been cut through. My incision ran from under my left breast, under my left armpit and up and around my left back shoulder blade and I had 3 drainage tubes in my left side rib cage to help drainage. And they wanted me to walk???? I sweated just eatting. The nurses told me later that the whole eatting process gets your whole body involved - with digestion and all, so actually it's quite strenuous on your body.
Why it always seemed to be lunch time when people would come visit, I'm not sure, but there I would sit, just drenched in sweat, trying to look like a human since I hadn't been able to shower --- it is all just humbling suffice it to say.
I was there for at least 10 days. They couldn't let me go til the fluid was out of my lungs, rib cage, etc., And that is when I was put on my lifetime commitment of heart meds. I just couldn't wait to get home, back to my life.
Back to my home yes, back to my life - what it was before 12/28? No.
I couldn't drive for 6 months until I was able to start physical therapy to get strength back in my left arm (I couldn't even lift a gallon milk jug) and I also needed to gain more flexible motion in my neck so I could try to look over my shoulder. The seatbelt was a nightmare, just having the strength to click it in place. I could have thrown up by the pressure of the belt across my chest and well, the anxiety and fear that would shoot through my brain as soon as I'd get into a vehicle as memories of my dissection would strike out of no where.
It was tiring just going to the bathroom as my core muscles were shot --- I could have used one of those senior citizen toilets back then (the tall ones) --- the regular toilets felt like trying to sit on a preschool sized toilet - I couldn't brace myself at all as putting even the slightest bit of pressure on my left arm sent stabbing pain into my left chest.
Wow ---- the memories that come flooding forward. The challenges, the pain, the isolation you feel. But I'm here and thankful everyday that I am.
I had to quit my job --- the doctors don't want me to risk getting sick with a cough that could reopen my dissection and my family and friends who were there for me during this whole event were extremely displeased and ready to disown me when 2 years ago I tried working at a preschool center for 3 weeks as I missed working with kids, and it was nice getting a pay check for awhile, but preschool kids are sick alot, and the risk was too high, and well, I just don't want to go through all of that again -- the fear is still there.
The lack of ribs interfers with doing other forms of work, not to mention all the nerves, muscles etc., they had to sever, on top of still having the original dissected aneurysm, and the effects of the heart meds. There are just days when I can feel like I'm treading in water. The emotions can be high or low and anxiety kicks in now and then. Walking and doing the treadmill keeps me going, not to mention my kids!
I've been to the emergency room several times since my surgery; maybe anxiety induced, but more often than not, I think my blood pressure gets too low (like when I tried switching from Metoprolol to another beta blocker since it was cheaper ----- huge mistake -- thought I was going to die --- I felt like I was climbing out of my skin, grasping to stay alive -- trying to force my heart to beat). Once back on the Metoprolol - I was back to normal, as normal as I can be.
Everytime I have gone to the ER or have seen a new doctor for what ever reason - I get the same "Wow, do you know what you have?" "Do you know how screwed up your aorta is?" "You must have an important purpose for still being here!"
I know they mean well, but the pressure of those words weighs heavily. What if the reason I am still here is to be a mom? Even though I think it is very important - not everyone else can see it that way. It's like I'm supposed to do some kind of phenomenal act or something. You know - "most people don't survive what you have and you are too young to have what you have (granted that was when I was 39, but they always told me this is something 65 or older people get).
I used to get a catscan every 6 months, but have had to put it on hold due to not being able to afford the deductible even though I pay alot for my health insurance (you know the kind you have to have - the prexisting condition insurance kind) and my husband was laid off last May. I am thankful that we at least have insurance - it's just shy of 400 dollars a month just for me with a 3000 dollar deductible, but being in Minnesota - we do have phenomenal doctors/surgeons here.
I can't qualify for disability because I was self-employed and we own our house even though I haven't been able to find a job or figure out one that I can do with my situation. But I also don't want to succumb to living off the system. I liked making my own money and I don't want my condition to "define" who I am.
I look normal on the outside, but I'm reminded every day of what I have and what I have gone through, whether it be aching pain, or pains that show up in the oddest of places which in turn can kick in the anxiety. Depending on what time I take my meds, or what I take it with, or who knows what triggers my meds to give me side effects that might last a whole day including just feeling overwhelmingly tired, but I am not a nap taker.
But the worst part of the after affects of my situation is that mentally I know who I am and what I would like to be able to do, but know that I can't, if I want to still be here that is. It's the realizing you have to suck it up as the risk is too high. No more skiing, skating, running, bowling, sleeping on my stomach even to mention a few.
The best part of this experience if I needed to state one is that I don't take life for granted anymore and didn't even realize that I was, until I went through this.
I have my days where I get frustrated and angry and try to figure out how or why or what caused this to happen, but they don't have an answer. It doesn't run in my family. My parents and siblings have had scans and they don't have any aneurysms (which I'm extremely thankful for). My kids will need to be checked as they get older - just for precautionary sake.
I did just find out this past fall, through some medical reports from my past, that in 2002 when I was 37, I had had a hysterectomy in the spring, and in that summer I had had an ultrasound done through an internist due to some discomfort in my abdominal area just below my sternum where I felt pressure and throbbing at times. The test looked fine and he chalked it up to maybe scar tissue from my surgery. So I never pursued it further. I finally requested a printout from the radiologist who read my ultrasound and it states very clearly that I had an unusually large aorta for someone my age! But the internist never said anything nor suggested any further tests (you know the whole you are only 37 so there is nothing to be concerned about). Considering that my dissection took place a year later and my surgery a year after that -- has of course crossed my mind that maybe if I had been put on meds back then as a preventative -- maybe I wouldn't have had to have gone through all of this.
My sister questions whether the surgeon who did my hysterectomy nicked me. The doctors have told me coughing too hard can even cause it - so who knows if all the different times I got pneumonia caused it - and there are reports that certain birth control pills can cause issues for those who have vascular issues (which no one ever checks and how do you?), they've asked if I have Marfans (I'm 5 foot 4 and don't have long lengthy arms so I don't really fit with the criteria for that either), could be from pushing during labor and the list goes on and on and on.
I can't reverse what has happened either. All you can do is take care of yourself and appreciate every day you have. I don't mind my birthdays (as others complain that they are another year older) since I know I got another year to be with my family and friends.
I always believed in a higher power and still do. It has led me to look at life in different ways, to expand my spiritual path beyond blindly following, and I continue to grow and question and learn. Look where it has led me after 6 years of searching --- here, this site, and even if just writing this blog is the reason why, I can accept it.
Even if no one reads this as this is the short version --(there is so much more to the last 6 years and I could probably vent until infinity), it is still cathartic, and I don't feel alone anymore.
I thank you for being there.
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