My Story

Last Thursday marked 12 weeks since the date of my open heart surgery and 14 and a half weeks since I first entered the hospital and this whole thing started. I have been wanting to write my own version of what happened for a while.  In some ways wish I would have sooner because I seem to have some amnesia to a lot of it. I think that’s your brains way of protecting you similar to experiencing child birth. But here’s what sticks out.

Last fall 2021 I finally got myself to find a Doctors office that I liked who would do some blood work for me to investigate the fatigue and migraines I had been experiencing since Miller was born. Most people I spoke with blamed it on having a small child, but deep down on my gut I could tell it was something more. For years I have experienced bouts of “not feeling right” and was finally in a place to dig deeper. My new Practitioner saw some clues in my blood work. She told me to take some supplements and come back in 6 weeks to do more testing. Well that second round didn’t happen because their whole office was practically shut down due to COVID in the coming months and then mid December after a fun ski weekend in Mammoth where Mike had a cold all weekend and I felt great, driving home in the car back to Reno I asked myself the question, “am I finally getting this cold he’s had the past 5 days? Darn-it” I had been feeling invincible.

I got the cold and then some. It was a week before Christmas and I assumed it would be gone by the holidays. We considered not having family come, but after multiple negative COVID tests they decided they wanted to come anyways. I was so worried to pass along this cold, for me it wasn’t it quick five days, it wouldn’t go away and only kept getting worse. By January I went in to see my practitioner and they gave me steroids for what was now a pretty bad case of Bronchitis. They told me to go to urgent care if it doesn’t go away so I could get a chest X-ray. A month into this sickness I went to Urgent care. Yes I had Bronchitis, no to pneumonia. And now yes to COVID. Mike had tested positive at home- the main reason I went in… I was worried about COVID on top of my month long cold. Well COVID came and went, it was worse for me being sick already but I survived fine. And now I was left with bronchitis still but in ways it was better. I had started to have weird symptoms that were not normal for a cold. Confusion, problems with sight, my brain was not feeling right. Night sweats had started before COVID but had gone away for a while and now we’re back and concerning. Many people blamed it on Long COVID but I was not convinced.

Fast forward to early March…Although not feeling one hundred percent, I felt okay enough to take Miller to Manhattan Beach for a long weekend. While there I pushed through, but underneath it all I could tell something was really wrong and just wanted to get back home. My whole trip I was telling all my friends I just don’t feel right.  I came home and finally got that second round of blood work I had wanted a day later.  We did deeper dive and some more rare testing.  And four days after getting back home I was acutely ill with a severe fever and went to the ER. Even then I was trying to push thru it, but in the recent days two different people told me stories of how someone they new had gotten deadly Sick and hadn’t known it. It was time to get answers. I went to the hospital thinking I’d be back with the right meds finally. I was admitted. And there started the journey to this whole thing that I finally had a name for. 

Thank goodness my first ER doctor wanted to figure things out. My blood work from a few days previous had come back that I had active Epstein Barr.  But he also thought there was something else beneath it all so he kept digging and many, many different tests later he found Bacterial infection that landed on my aortic valve and created a mass.  I had Bacterial Endocarditis on top of the Epstein Barr.  The Endocarditis was much more serious and we needed to focus on that first. Talk about adding insult to injury. Even to this day the doctors feel my blood work showed I might have a third factor that we have not discovered yet. Maybe the thing that has been making me feel fatigued over the years. We are still hoping to look into that in the future months as I’m feeling much better.

This is where everything is a little blurry in my mind. And you can probably tell by now I wasn’t an English major so bare with my writing skills…That first hospital stay was a handful of days. We decided to go the conservative route and try antibiotics for four weeks hoping that would take care of the bacterial infection and would help me avoid surgery to have it removed.  I had my midline set and was sent home. We needed help at home with Miller and family and friends stepped in (thank you).  A handful of days after being home my mom was set to come help with Miller. The day she came in I had been feeling some stomach pains and also had been having a hard time with my antibiotic injections. Doctors instructed me to go back to the ER to make sure things were going smooth. My mom arrived in the afternoon, and literally ten minutes later we left to figure things out at the ER, and unfortunately and unexpectedly I was admitted again. I had formed a blood clot in my arm so the midline had to come out.  I also had minor Gallstones (go figure)…but more importantly, things had gotten worse with the infection, and after many more tests later it was determined I was going to need surgery in the next few days. My body was shutting down. My life depended on it.  Things kind of get even more blurry from here on out. Many tests to figure out many different things that were going on with me or not going on with me. Many days of sitting waiting, sleepless nights. More tests, more meds. And finally the decision was made to stay in Reno for the surgery which was set for March 31st. 

We had debated about going elsewhere for the surgery. Naturally, I wanted the absolute best doctor to work on me. Friends had helped us get connected with a doctor in San Francisco who was doing surgeries similar to what I needed and with the potential to be less invasive (not open heart).  Ultimately we decided to stay with the CT surgeon we had been working with here. After talking to him and seeing his perspective on my situation I felt very comfortable with him moving forward. He seemed like a gentle giant. He reminded me of one of my best childhood friends, and that gave me comfort.  He set my mind at ease but he also scared me telling me all the percentage points of what could go wrong including death.  I was too tired and too sick to go elsewhere at this point. It was time to move forward. 

If you’ve been following my story you know that I had many complications along the way. Problems with my medicines, midlines, IV lines, allergic reactions, etc.  Lots of fevers. And a lot of unknowns. That’s the stuff I’ve kind of blurred together… it’s less important to detail all of that so I’ll continue on with my Cliff Notes version of what I have been through.

After that second ER visit I never left the hospital before my surgery as they kept me that whole week preparing me for the day of surgery.  I would need to stay at least five days after surgery which was a long time to be away from my family. The hospital made some exceptions and let Miller and my mom come to visit me the day before surgery which was definitely a boost in my mind for positive thoughts going forward. Did I fear it may be the last time I would see my family?  Yes.  There was a chance of death from the procedure. 

March 31st was surgery day. I remember waiting to go in. I can remember meeting the team in the surgical room of at least 15 people moving about getting things ready. The room was cold. They played loud music I think 80s. It was longer than I imagined before I was out. Next thing I remember was waking up to the tube down my throat that needed to be left in for a few hours. I had tubes coming out of my abdomen as well draining fluid from my body. I had been on the heart and lung machine for an hour and a half during surgery, total surgery three hours I believe. Recovery was tough the first few days. But I had good nurses, David was my favorite. There was construction below my room which made rest hard. The physical pain was very real. But daily I saw improvements. I needed lasix to pull the excess 25 pounds of fluid off of me from surgery. Mike said I was almost unrecognizable for a brief time. I also needed to have multiple blood transfusions.  My body had been so depleted. Five days later they discharged me, believing that with all the noise at the hospital I would be better to recover at home. I could barely move on my own. Going home was scary.

One thing we didn’t do before I left the hospital is go back to my original antibiotic medicine that would be administered through my new midline on the non blood clot arm for the next 4 weeks. I had switched to penicillin while I was at the hospital. We were going back to Ceftriaxone. I had been on it before so nobody thought twice about it. The first time I received the medicine at home I had a terrible reaction to it. It was the only time I went back to the ER via ambulance. Mike said the men in the house from the fire department were the best looking guys in Reno…ha ha. Even one of the guys who had been on the Bachelorette was there. I was so out of it I pretty much missed it all. Landing back in the ER bought me a few more days at the hospital, I can’t even remember how many at this point. They switched me back to penicillin and I would stay on that until I was done with my antibiotics. I would have to wear a Fanny pack that held the meds in a compression ball that continuously infused me…its a good thing I like fanny packs!

When I finally did make it back home it was a slow road. I know there were multiple more ER trips. My last ER stay was at the end of April when my sister was in town helping. To all the people who were able to make it out and help me thank you so much. You will forever be woven into my story and I couldn’t have done it without you. My girlfriend Shannon was there at the beginning I can’t even believe how much I have improved since she had been helping me. I couldn’t even sit up in a chair by myself at that point… When my sister was in town I laid on the ground for the first time it had already been a month past my surgery. Laying on the ground was so difficult. I was only there for about a minute and I was in pain for a couple days because of it. Tina was the master of making meals! We are still enjoying frozen dishes that she prepared for us. But more than anything, everybody helped so much with Miller. And Miller feels so connected to all of you, so thank you very much for taking care of our family. At 12 weeks postop I am still unable to pick Miller up regularly. Just to give you an idea of where I’m at now.

Back to my last ER trip(s)…As I was nearing the end of my antibiotics at the end of April my veins were just so tired of being poked.  I went into the ER to have it looked at and they kept me for I believe three nights. I needed to switch my midline to a new location. I was running out of veins that were able to handle the constant injection.  The last night I was there was because there were no doctors or nurses who could set my new midline and I was furious to be just sitting in the hospital waiting. It was the first time I had really freaked out at the hospital and I was losing my mind. I had been on an IV constantly now for over seven weeks. I was going home the next day no matter what I told them. I woke up to the same dilemma. Nobody who could set my midline… Does the hospital not operate over the weekend?  My doctor for that stay allowed me to leave, not by her choice, with a regular IV in my arm as long as I went back to the ER the next day to have the new midline set. That seems like a lot of work, but to me it was important to be home with Miller.  The next morning we went in at 7am. They had a horrible time finding a place to set the midline. The first nurse I had gave me phlebitis as she missed my vein and pumped a ton of fluid right into my arm. Phlebitis is when your arm is completely swollen it takes about 8 weeks to go back to normal. And I still feel tightness in my left bicep from this right now. Thank goodness all the swelling went away within the first two weeks.  They found a vein in the same arm they had missed in…I only had 3 days of antibiotics left, what could go wrong?. Well I was back in the ER the very next day because of the phlebitis.  I was so worn out from all of these different ER visits I’m sure I missed a few in my story here. I had two more days with the antibiotics and we went home.

Turns out we made it almost to the end.  Thanks to all my Nurse friends for helping me in the final hours of my midline.  I refused to go back to the ER again. We had decided to end my antibiotics 12 hours early. In the long run that doesn’t seem like a lot but we were afraid that it would affect my recovery and ridding of the bacterial infection. My arm was so swollen from my last ER visit. Eventually my arm was so swollen it pushed anything that was going into my vein right back out. We didn’t even know if I was getting the medicine anymore. That day when we decided to pull the IV out at home which seems a little risky I immediately started feeling better. Don’t worry we did consult the pharmacist before we did it.  I was finally done with antibiotics I had been on them for so long. 

Turns out ending the antibiotics early did not affect my recovery. Doctors visits and follow ups after have showed that I am doing great. There is no more bacterial infection. Epstein Barr has run it’s course. And no more ER visits. In mid-May I was accepted to the cardiac rehab program. I’ve been participating in this program three days a week for two hours a day ever since. It’s a group class, one hour of education and one hour of workout. I can’t tell you how much stronger I have gotten since I started. I might be in better shape now than I was before I got sick.  Just yesterday I was able to increase my max target heart rate from 152 to 179. That means my heart is working well and I am able to push it more today than I have been able to since my surgery. I love being able to workout with nurses right by my side it has really given me the confidence to know that I am OK. 

Today 12 weeks out from my surgery this is what I am left with: feeling tired more often. Not being able to think straight yet, my mind feels like scrambled eggs sometimes. Not being able to find words or thoughts the way I used to. Having some anxiety in daily life which is very physical in my chest. Being able to hear my heart tick with every beat now that I have a mechanical valve. Having the feeling of wanting to be home more often than out and about. Being left with knowing the small things that bug you are not important. Getting rid of people in my life that are not supportive. Decluttering everything. Noticing the small beauties in nature. Making time for things that matter to me, I’m still working on this one. And saying no to things that I don’t want to do, this one is still really hard but I’m working on it.

I’m doing great. I have been told the total recovery is about a year. The hardest part is that I look normal now. But don’t quite feel normal, maybe I’m still finding my new normal. Thank you for all the positive thoughts you all have provided the past few months. They have made a huge difference. And for those of you who have been wanting to reach out but haven’t yet, please do!. I am ready to take on the communication. Hopefully the road from here is easy. 

I will leave you with some stats of the past few months. 30 total days in hospital, 9 trips to ER, 47 days of IV therapy, 5 post-op out-patient visits, 16 days of physical therapy so far…will do 36 total.  This last one is crazy: weight going in to surgery 120lbs, weight right after surgery 140lbs, weight 3 weeks post-op 110 lbs, weight 12 weeks post-op 115lbs. And I am happy where I am now!

Thank you for following my journey!

Anne