andrea's Story

About Me (In My Own Words)

June of 2016, I found out that I emergently required open heart surgery. An aortic valve replacement, to be exact. Of course, the first thing I did was hit up Google to read about other people’s experiences. Since it’s a relatively common surgery, I was surprised to find next to nothing online regarding experience, what to expect, etc. At that point, I promised myself that when all was said and done I would write such a thing and post it online. Well, its now December 25, 2016 (yes, Christmas day) and once again sat in the hospital (there have been about a billion hospitalizations in between but some of them are irrelevant as far as this goes. Finally, I think its time I write about what I remember about the valve replacement surgery and surrounding circumstances. My story will differ because I have some underlying medical issues. As it is, I have forgotten a lot of details already. But here we go…
In May, 2016 I had a port placed in my chest for several reasons. In the interest of not boring you with my complete medical history, lets just say its purposes were not for cancer, but rather more for prophylactic hydration and rescue from flares of my condition. I’m not going to name any names in this, but the doctor who placed this port was not smart. This was round 2 of him trying, on the previous try he went in my right side instead of my left after imaging and extensive conversation about the fact I had no usable veins on my right side. He went ahead, and after I was sedated, decided at the last second to attempt the right side anyway. No luck, and I don’t know what he did in there but I have had pain after a lot of procedures in my life but the pain I experienced after this port fail was insane. I’m not rating it 1-10 because I hate that chart, but lets just say it was pretty high on the “this really sucks” spectrum. Could not raise my arm for over a week, etc (and I’ve had previous ports so know that this should not be…it should be a relatively painless healing). Anyway, that was a little off topic, but still related. It was that same doctor who placed the port I referred to in May, 2016. After that “successful” placement, I was really sore again, not really able to use that arm at all. But remembering how violently that doctor had attempted the previous port, I assumed it was all his fault.
So, May turned into June and I was having a blast with my kids on summer vacation. We were having fun, doing our thing. The thing is, I kept getting sicker, little by little. No major event took place. We walked a lot, we played a lot of games, we rode bikes a lot. And we went to a lot of parks and hung out with lots of friends. I was getting weaker though. By the end of June I was not able to walk without hanging onto something. My kids were amazing to me and I am so proud of how much they helped out around the house, and helped me with everything. Hunter in particular, he wouldn’t let me get up and walk to the bathroom even without him helping me. Because I went downhill so incredibly slowly (and lets face it, “downhill” is not that much of a descent for me .
Anyway, one day it got particularly bad. I couldn’t say the right words (ie I meant to say “cat”, I said “sandwich” without noticing until the kids busted up with laughter). It was really strange though. That afternoon, my son (my son is a mama’s boy to the core, hes my best friend) had his head on my chest and told me “mommy there is something wrong with your heart. It is going too fast and it keeps on skipping beats. It was a Friday night and the kids were to go to their father’s for the weekend. Once he picked the children up I realized it was true, there was something wrong with my heart, and that evening after they left, things deteriorated extremely quickly. So I called 911, and it’s a good thing I did.
By this point I couldn’t walk, literally every muscle in my body was searing in pain (probably from lack of oxygen I was later told). I could no longer speak a coherent sentence. My resting heart rate was in the 180s, my blood pressure was 70/palp, and my O2 sats were in the low 80’s. I was in the middle of an adrenal crisis in addition to a cardiac event and, what we would later learn, sepsis/bacteremia. I remember being in the ambulance and them asking me which hospital I wanted to go to. I said I didn’t care, so they started driving to the closest one as they were doing my vitals and getting EKG. Suddenly the EMT called to the driver “NO, we are going to Hospital B…” (don’t want to mention any names or hospital names, so lets call it hospital B because it was the second choice due to proximity to my house – it was it a little further away), ‘...it looks like she’s having a STEMI. Lights and sirens!!” (a “STEMI” is a particular type of heart attack).
So, we get to the hospital, and despite the fact that I could hardly speak, I was trying to be good natured. I explained that I have adrenal insufficiency and I MUST HAVE an injection of stress dose steroids IMMEDIATELY. They refused. For hours. I kept saying it. They must have thought I was just delirious or something. I finally begged that they call an endocrine consult, and they did and eventually got me some steroids. Anyway, that was a little off track. They ripped off all of my clothes with a million people in the room doing a million things at once, just like you see in the movies. Did another EKG once I got into the hospital, and confirmed that I was indeed having a major cardiac event that looked to them like a STEMI. Obviously that was really bad news and I was terrified at that point. They stuck a nitroglycerine patch on my chest, accessed my port to draw labs and give me some medications and then packaged me up to go to the cath lab.
Once in the cath lab, they had the expected trouble getting peripheral access. They were assuming at this point, due to fever, etc, that I was septic and that it was due to the port, so while they were still using it at this point (there wasn’t another option at the time). Finally they ended up getting out the propofol so they could do what they needed to do on top of trying to secure good venous access elsewhere because everyone really wanted to take the port out as it was really the only good answer about where the source of infection could have been from (remember, this port was only a few weeks old and had never actually been accessed. It had to have been contaminated when they placed it… grrr stupid doctor). Anyway they finally got a triple lumen central line in my left IJ. I was out because of the propofol but they apparently found no plaque, or blockages in any of my arteries. Everything looked clean. So I had elevated heart enzymes, an EKG that showed a textbook STEMI.
One thing I haven’t talked about are my symptoms. I normally have a lot of nausea and vomiting and abdominal pain, so I don’t know if those can be counted as symptoms. I also was having a lot of left arm pain that started exactly when the port was placed, so I don’t know if that was a symptom or not. I had a super high heart rate and low blood pressure, but that is typical of adrenal crisis, which I was also experiencing. I had severe pain in all of my limbs which they tell me was because of not enough oxygen getting to them. My brain wasn’t working right “word salad”, what I said was not what I was trying to say. But of all of my symptoms, I don’t think I would have chalked it up to “heart attack” ever. So let this be a warning to you: you don’t have to drop to the floor in excruciating left chest pain to be having a heart attack. My symptoms went on for weeks. Yes, I was having a heart attack for WEEKS. Don’t mess with this stuff, folks.
Anyway, they placed a stent and admitted me to ICU. I remember them bringing me my phone and asking me which numbers out of it they should call to tell me about my status because there was a very big chnce I would be intubated and may or may not ever wake up. All I could think of was my kids, and I will never forget the heartbreak I felt when a medical professional straight up told me I was probably no going to ever see them ever again. Turns out they were wrong. After about a week in ICU, I was good enough to go to the cardiac floor, not really too sure what to do with me. By that point it was obvious that I was septic, so the port came out and they were hitting me with Vanco and Zosyn. They did an echo, and it looked normal. They weren’t sure why I was having such severe shortness of breath and chest pain. It was out of this world. That said, they couldn’t figure out how or why I had a heart attack either at 35 years old, without risk factors, and with no blocked arteries.
Finally one of the cardiologists came by and when he was listening to my heart, heard a murmur that seemed louder than it had the last time he saw me (about 2 days prior), so on a hunch, he ordered a T.E.E (trans esophageal echocardiogram) where they basically do an EGD (stick a camera down your esophagus) while doing an ultrasound from the outside so they can get a better view of the heart – viewing from the inside allows them to better visualize things because there isn’t all that breast tissue on females or muscle on males to look through. Anyway, when I was waking up from that propofol nap I heard the doctor dictating his notes… “Severe endocarditis with acute vegetation on aortic valve”. As much as I hoped it was just a drug nightmare, it wound up being true. The plan became to keep me on the cardiac floor until my cultures came back negative, and then immediately go in to replace that valve. It was a scary situation. The longer they waited, the worse that valve was getting. But going in while I still had bacteria floating around my blood, and that would be the end of it also.
After about a week and a half, I was deemed bacteria-free enough for surgery. To say I was terrified was putting it lightly, but there were no other options and my symptoms were worsening by the minute. The surgeon and his Fellow came in although with pain/palliative (I am on a lot of pain medication to begin with so tackling post surgery pain was kind of going to be a lot of trial and error, so there was quite a bit of conversation about that. Anyway, they told me the gist of what would be happening – midline incision, putting my on bypass so that they could access my aortic valve which is right in the center of the heart, and then putting it back together). I remember, as they were pushing the meds, thanking them, asking them to do their best and telling them that if I didn’t survive, I would haunt them all… we all had a little laugh, and then I was off to surgery-land.
Waking up in ICU was no fun. My pain was in no way under control. I was still on the ventilator so I had no way to communicate. I remember wiggling around because of the pain, and three or four nurses having to hold me still so that I didn’t rip out my sternal wiring. Eventually they got the pain under control, and a few hours later they finally took out the breathing tube. It was only then that I really had a chance to evaluate what was on/in my body. While out for surgery, they had placed an arterial line as well as a contraption on my wrist that allowed about 9 IV lines to go in. They had also switched the IJ in my neck to something a little bigger – I don’t know what it was, didn’t look like anything I had ever had before. Then coming out from under my ribs was a chest tube (I was lucky, most people end up with two but I guess due to anatomy, I only had one), and then a wire that was basically an external pacemaker for them to control things until the swelling decreased enough that I could do it myself. Oh and a catheter so I didn’t have to worry about getting up to use the bathroom. I’m telling ya’ those things could be handy in day to day life lol
That first day was really hard. Major heart surgery, and they wanted me walking that same afternoon. Due to the pain issues, that goal didn’t quite get accomplished. I did get into a chair for a little bit, which was excruciating, but felt good at the same time. The next day, palliative care got my pain medicines managed, the catheter came out and I walked to the bathroom and even around the unit a little bit (with assistance of a huge walker that allowed me to load all the necessary “equipment”, and rest my arms as well as a nurse following with a wheelchair and the PT telling me how to do it right and keeping an eye on my vitals). I don’t think I made it very far that day. What I do remember, is the day, weeks earlier at that point, that I first came into ICU via ambulance, there was a particularly odd doctor with a very memorable name who just kind of sat in the corner spouting off hilarious nonsense. At the time I wasn’t sure if he was real or if I was hallucinating. Anyway, that first walk, from the other end of the unit I hear “Ms G***? Holy shit. I cant believe that is you walking. I had never seen someone so sick the day you came in! Good job!” Anyway, seeing as hes one of the main intensivist doctors in a very large ICU, I think that says a lot.
My stay in ICU was almost 2 weeks, but this is much longer than most. Most would be a couple of days, but because of my underlying health problems, I ended up staying longer. Every day or two I would lose a couple of tubes – the catheter, the battery pack wire thingy controlling the external pacemaker thingy, the chest tube (don’t know what a HUGE relief that one is until its gone!), the arterial lines, most of my IV’s, and then my central line was switched for a different, more long term kind of line (Hickman / Tunneled CVC which is a line that starts either in your jugular or subclavian vein, goes straight to your heart, and then is tunneled a few inches away to an exit site to minimize infection). I was going to be going home on months worth of antibiotics because of the underlying infection that caused the endocarditis which necessitated the valve replacement. I’m not going to lie, that ICU stay was really hard. I gained about 20 pounds of water weight from my cardiac issues, and then lost 40 from baseline (so a total of 60) within 2 weeks of being out because of not being able to eat properly, and my body requiring so many extra calories.
I finally did make it out of ICU. Back to the cardiac floor for another week or so. They went sure what to do with me. I felt well enough to go home and I really think my condition wasn’t improving s fast as it should have been because I NEEDED to be with my kids. Sure they came to visit when they could but it ws difficult since they depended on their father to bring them. I needed to be on IV antibiotics for another six weeks and I wasn’t at my “home” hospital who had sent me home previously on long term antibiotic treatment. Anyway, thanks to a wonderful primary care doctor, who said he would take care of what needed to be taken care of from that end, I was eventually released home on IV antibiotics.
I wish that was the end of the story. Things went well for a couple of weeks, but one day while the home health nurse (who came to change my dressings and stuff) noticed my resting heart rate was in the 160s (it should be like 80-90). So, back to the hospital I went. Severe pericardial tamponade which is when your pericardium (the sack that holds your heart) starts to fill up with fluid. It is a part of the risks of any major heart surgery – the extra inflammation, causes extra fluid. That fluid squeezes on the heart and doesn’t allow it expand properly so it just kind of flops and quivers around without being able to adequately oxygenate the body.
So it was another emergency surgery, where they went in with a needle through my groin and then again through my chest with another needle, and drained off all the fluid. All 1.9 liters of it. Can you imagine a freaking soda bottle of fluid in your chest squeezing on your heart? I was lucky that mine stretched that far and didn’t burst. I felt immediate relief when they drained it. However, they had to do a thoracentesis as well (same basic deal but with the lungs, they go through the back with a big needle to drain off the fluid around the lungs) because my hugely stretched pericardium was making it look like I had a ton of fluid there too. As it turns out, they only got about 800ml off of my lungs, but that’s still significant I guess.
Anyway another couple of days in ICU, a couple on the cardiac floor, and home I went. There were some additional speedbumps (was on oxygen at home for a short while) that no one really knew the origination of, but it appears that finally, six months later, I’m pretty much over it. I am in the hospital right now for positive cultures. For the rest of my life I have to be very careful about infection as the new valve is from a pig so it obviously does not have an immune system, and every infection that goes through my blood is going to directly come in contact with it. So, tomorrow they do a T.E.E to make sure nothing is growing on there, and in the meantime they’ve been culturing the snot out of me and have me on antibacterial and antifungal medications. I wish I would have video taped and documented the whole experience. I really do. Kind of decided to do that with hospital stays going forward, starting now.
Since my aortic valve replacement had so many complications, I am not sure how useful it will be to others reading it. But since there doesn’t seem to be any info really at all about it out there, I figured I would post it somewhere anyway. If you have questions you can email andreaguber80@yahoo.com . I apologize in advance for spelling and grammatical errors, I did this whole thing speech to text so theres bound to be mistakes!
June of 2016, I found out that I emergently required open heart surgery. An aortic valve replacement, to be exact. Of course, the first thing I did was hit up Google to read about other people’s experiences. Since it’s a relatively common surgery, I was surprised to find next to nothing online regarding experience, what to expect, etc. At that point, I promised myself that when all was said and done I would write such a thing and post it online. Well, its now December 25, 2016 (yes, Christmas day) and once again sat in the hospital (there have been about a billion hospitalizations in between but some of them are irrelevant as far as this goes. Finally, I think its time I write about what I remember about the valve replacement surgery and surrounding circumstances. My story will differ because I have some underlying medical issues. As it is, I have forgotten a lot of details already. But here we go…
In May, 2016 I had a port placed in my chest for several reasons. In the interest of not boring you with my complete medical history, lets just say its purposes were not for cancer, but rather more for prophylactic hydration and rescue from flares of my condition. I’m not going to name any names in this, but the doctor who placed this port was not smart. This was round 2 of him trying, on the previous try he went in my right side instead of my left after imaging and extensive conversation about the fact I had no usable veins on my right side. He went ahead, and after I was sedated, decided at the last second to attempt the right side anyway. No luck, and I don’t know what he did in there but I have had pain after a lot of procedures in my life but the pain I experienced after this port fail was insane. I’m not rating it 1-10 because I hate that chart, but lets just say it was pretty high on the “this really sucks” spectrum. Could not raise my arm for over a week, etc (and I’ve had previous ports so know that this should not be…it should be a relatively painless healing). Anyway, that was a little off topic, but still related. It was that same doctor who placed the port I referred to in May, 2016. After that “successful” placement, I was really sore again, not really able to use that arm at all. But remembering how violently that doctor had attempted the previous port, I assumed it was all his fault.
So, May turned into June and I was having a blast with my kids on summer vacation. We were having fun, doing our thing. The thing is, I kept getting sicker, little by little. No major event took place. We walked a lot, we played a lot of games, we rode bikes a lot. And we went to a lot of parks and hung out with lots of friends. I was getting weaker though. By the end of June I was not able to walk without hanging onto something. My kids were amazing to me and I am so proud of how much they helped out around the house, and helped me with everything. Hunter in particular, he wouldn’t let me get up and walk to the bathroom even without him helping me. Because I went downhill so incredibly slowly (and lets face it, “downhill” is not that much of a descent for me .
Anyway, one day it got particularly bad. I couldn’t say the right words (ie I meant to say “cat”, I said “sandwich” without noticing until the kids busted up with laughter). It was really strange though. That afternoon, my son (my son is a mama’s boy to the core, hes my best friend) had his head on my chest and told me “mommy there is something wrong with your heart. It is going too fast and it keeps on skipping beats. It was a Friday night and the kids were to go to their father’s for the weekend. Once he picked the children up I realized it was true, there was something wrong with my heart, and that evening after they left, things deteriorated extremely quickly. So I called 911, and it’s a good thing I did.
By this point I couldn’t walk, literally every muscle in my body was searing in pain (probably from lack of oxygen I was later told). I could no longer speak a coherent sentence. My resting heart rate was in the 180s, my blood pressure was 70/palp, and my O2 sats were in the low 80’s. I was in the middle of an adrenal crisis in addition to a cardiac event and, what we would later learn, sepsis/bacteremia. I remember being in the ambulance and them asking me which hospital I wanted to go to. I said I didn’t care, so they started driving to the closest one as they were doing my vitals and getting EKG. Suddenly the EMT called to the driver “NO, we are going to Hospital B…” (don’t want to mention any names or hospital names, so lets call it hospital B because it was the second choice due to proximity to my house – it was it a little further away), ‘...it looks like she’s having a STEMI. Lights and sirens!!” (a “STEMI” is a particular type of heart attack).
So, we get to the hospital, and despite the fact that I could hardly speak, I was trying to be good natured. I explained that I have adrenal insufficiency and I MUST HAVE an injection of stress dose steroids IMMEDIATELY. They refused. For hours. I kept saying it. They must have thought I was just delirious or something. I finally begged that they call an endocrine consult, and they did and eventually got me some steroids. Anyway, that was a little off track. They ripped off all of my clothes with a million people in the room doing a million things at once, just like you see in the movies. Did another EKG once I got into the hospital, and confirmed that I was indeed having a major cardiac event that looked to them like a STEMI. Obviously that was really bad news and I was terrified at that point. They stuck a nitroglycerine patch on my chest, accessed my port to draw labs and give me some medications and then packaged me up to go to the cath lab.
Once in the cath lab, they had the expected trouble getting peripheral access. They were assuming at this point, due to fever, etc, that I was septic and that it was due to the port, so while they were still using it at this point (there wasn’t another option at the time). Finally they ended up getting out the propofol so they could do what they needed to do on top of trying to secure good venous access elsewhere because everyone really wanted to take the port out as it was really the only good answer about where the source of infection could have been from (remember, this port was only a few weeks old and had never actually been accessed. It had to have been contaminated when they placed it… grrr stupid doctor). Anyway they finally got a triple lumen central line in my left IJ. I was out because of the propofol but they apparently found no plaque, or blockages in any of my arteries. Everything looked clean. So I had elevated heart enzymes, an EKG that showed a textbook STEMI.
One thing I haven’t talked about are my symptoms. I normally have a lot of nausea and vomiting and abdominal pain, so I don’t know if those can be counted as symptoms. I also was having a lot of left arm pain that started exactly when the port was placed, so I don’t know if that was a symptom or not. I had a super high heart rate and low blood pressure, but that is typical of adrenal crisis, which I was also experiencing. I had severe pain in all of my limbs which they tell me was because of not enough oxygen getting to them. My brain wasn’t working right “word salad”, what I said was not what I was trying to say. But of all of my symptoms, I don’t think I would have chalked it up to “heart attack” ever. So let this be a warning to you: you don’t have to drop to the floor in excruciating left chest pain to be having a heart attack. My symptoms went on for weeks. Yes, I was having a heart attack for WEEKS. Don’t mess with this stuff, folks.
Anyway, they placed a stent and admitted me to ICU. I remember them bringing me my phone and asking me which numbers out of it they should call to tell me about my status because there was a very big chnce I would be intubated and may or may not ever wake up. All I could think of was my kids, and I will never forget the heartbreak I felt when a medical professional straight up told me I was probably no going to ever see them ever again. Turns out they were wrong. After about a week in ICU, I was good enough to go to the cardiac floor, not really too sure what to do with me. By that point it was obvious that I was septic, so the port came out and they were hitting me with Vanco and Zosyn. They did an echo, and it looked normal. They weren’t sure why I was having such severe shortness of breath and chest pain. It was out of this world. That said, they couldn’t figure out how or why I had a heart attack either at 35 years old, without risk factors, and with no blocked arteries.
Finally one of the cardiologists came by and when he was listening to my heart, heard a murmur that seemed louder than it had the last time he saw me (about 2 days prior), so on a hunch, he ordered a T.E.E (trans esophageal echocardiogram) where they basically do an EGD (stick a camera down your esophagus) while doing an ultrasound from the outside so they can get a better view of the heart – viewing from the inside allows them to better visualize things because there isn’t all that breast tissue on females or muscle on males to look through. Anyway, when I was waking up from that propofol nap I heard the doctor dictating his notes… “Severe endocarditis with acute vegetation on aortic valve”. As much as I hoped it was just a drug nightmare, it wound up being true. The plan became to keep me on the cardiac floor until my cultures came back negative, and then immediately go in to replace that valve. It was a scary situation. The longer they waited, the worse that valve was getting. But going in while I still had bacteria floating around my blood, and that would be the end of it also.
After about a week and a half, I was deemed bacteria-free enough for surgery. To say I was terrified was putting it lightly, but there were no other options and my symptoms were worsening by the minute. The surgeon and his Fellow came in although with pain/palliative (I am on a lot of pain medication to begin with so tackling post surgery pain was kind of going to be a lot of trial and error, so there was quite a bit of conversation about that. Anyway, they told me the gist of what would be happening – midline incision, putting my on bypass so that they could access my aortic valve which is right in the center of the heart, and then putting it back together). I remember, as they were pushing the meds, thanking them, asking them to do their best and telling them that if I didn’t survive, I would haunt them all… we all had a little laugh, and then I was off to surgery-land.
Waking up in ICU was no fun. My pain was in no way under control. I was still on the ventilator so I had no way to communicate. I remember wiggling around because of the pain, and three or four nurses having to hold me still so that I didn’t rip out my sternal wiring. Eventually they got the pain under control, and a few hours later they finally took out the breathing tube. It was only then that I really had a chance to evaluate what was on/in my body. While out for surgery, they had placed an arterial line as well as a contraption on my wrist that allowed about 9 IV lines to go in. They had also switched the IJ in my neck to something a little bigger – I don’t know what it was, didn’t look like anything I had ever had before. Then coming out from under my ribs was a chest tube (I was lucky, most people end up with two but I guess due to anatomy, I only had one), and then a wire that was basically an external pacemaker for them to control things until the swelling decreased enough that I could do it myself. Oh and a catheter so I didn’t have to worry about getting up to use the bathroom. I’m telling ya’ those things could be handy in day to day life lol
That first day was really hard. Major heart surgery, and they wanted me walking that same afternoon. Due to the pain issues, that goal didn’t quite get accomplished. I did get into a chair for a little bit, which was excruciating, but felt good at the same time. The next day, palliative care got my pain medicines managed, the catheter came out and I walked to the bathroom and even around the unit a little bit (with assistance of a huge walker that allowed me to load all the necessary “equipment”, and rest my arms as well as a nurse following with a wheelchair and the PT telling me how to do it right and keeping an eye on my vitals). I don’t think I made it very far that day. What I do remember, is the day, weeks earlier at that point, that I first came into ICU via ambulance, there was a particularly odd doctor with a very memorable name who just kind of sat in the corner spouting off hilarious nonsense. At the time I wasn’t sure if he was real or if I was hallucinating. Anyway, that first walk, from the other end of the unit I hear “Ms G***? Holy shit. I cant believe that is you walking. I had never seen someone so sick the day you came in! Good job!” Anyway, seeing as hes one of the main intensivist doctors in a very large ICU, I think that says a lot.
My stay in ICU was almost 2 weeks, but this is much longer than most. Most would be a couple of days, but because of my underlying health problems, I ended up staying longer. Every day or two I would lose a couple of tubes – the catheter, the battery pack wire thingy controlling the external pacemaker thingy, the chest tube (don’t know what a HUGE relief that one is until its gone!), the arterial lines, most of my IV’s, and then my central line was switched for a different, more long term kind of line (Hickman / Tunneled CVC which is a line that starts either in your jugular or subclavian vein, goes straight to your heart, and then is tunneled a few inches away to an exit site to minimize infection). I was going to be going home on months worth of antibiotics because of the underlying infection that caused the endocarditis which necessitated the valve replacement. I’m not going to lie, that ICU stay was really hard. I gained about 20 pounds of water weight from my cardiac issues, and then lost 40 from baseline (so a total of 60) within 2 weeks of being out because of not being able to eat properly, and my body requiring so many extra calories.
I finally did make it out of ICU. Back to the cardiac floor for another week or so. They went sure what to do with me. I felt well enough to go home and I really think my condition wasn’t improving s fast as it should have been because I NEEDED to be with my kids. Sure they came to visit when they could but it ws difficult since they depended on their father to bring them. I needed to be on IV antibiotics for another six weeks and I wasn’t at my “home” hospital who had sent me home previously on long term antibiotic treatment. Anyway, thanks to a wonderful primary care doctor, who said he would take care of what needed to be taken care of from that end, I was eventually released home on IV antibiotics.
I wish that was the end of the story. Things went well for a couple of weeks, but one day while the home health nurse (who came to change my dressings and stuff) noticed my resting heart rate was in the 160s (it should be like 80-90). So, back to the hospital I went. Severe pericardial tamponade which is when your pericardium (the sack that holds your heart) starts to fill up with fluid. It is a part of the risks of any major heart surgery – the extra inflammation, causes extra fluid. That fluid squeezes on the heart and doesn’t allow it expand properly so it just kind of flops and quivers around without being able to adequately oxygenate the body.
So it was another emergency surgery, where they went in with a needle through my groin and then again through my chest with another needle, and drained off all the fluid. All 1.9 liters of it. Can you imagine a freaking soda bottle of fluid in your chest squeezing on your heart? I was lucky that mine stretched that far and didn’t burst. I felt immediate relief when they drained it. However, they had to do a thoracentesis as well (same basic deal but with the lungs, they go through the back with a big needle to drain off the fluid around the lungs) because my hugely stretched pericardium was making it look like I had a ton of fluid there too. As it turns out, they only got about 800ml off of my lungs, but that’s still significant I guess.
Anyway another couple of days in ICU, a couple on the cardiac floor, and home I went. There were some additional speedbumps (was on oxygen at home for a short while) that no one really knew the origination of, but it appears that finally, six months later, I’m pretty much over it. I am in the hospital right now for positive cultures. For the rest of my life I have to be very careful about infection as the new valve is from a pig so it obviously does not have an immune system, and every infection that goes through my blood is going to directly come in contact with it. So, tomorrow they do a T.E.E to make sure nothing is growing on there, and in the meantime they’ve been culturing the snot out of me and have me on antibacterial and antifungal medications. I wish I would have video taped and documented the whole experience. I really do. Kind of decided to do that with hospital stays going forward, starting now.
Since my aortic valve replacement had so many complications, I am not sure how useful it will be to others reading it. But since there doesn’t seem to be any info really at all about it out there, I figured I would post it somewhere anyway. If you have questions you can email andreaguber80@yahoo.com . I apologize in advance for spelling and grammatical errors, I did this whole thing speech to text so theres bound to be mistakes!

More Info About Me & My Heart

More About Me

• 
  I am from:
  philadelphia suburbs
• 
  I was diagnosed with:
  Aortic Regurgitation
  
• 
  My surgery was:
  Aortic Valve Replacement