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I have sat down to write this post a thousand times…but it took me months to process it, go through the thoughts of what to share and what not to share, and actually do it. I started this blog almost 10 years ago to document our lives for my daughter to have when she gets older and to share with others…share recipes, motivation, travel, tips for running and just life in general. So here it goes, I am sharing so those that have followed along all these years know more about what happened and those that are new and finding this because they are going through something similar know they aren’t alone. A couple years ago when I went through my BRCA gene testing and my surgery I shared here and still get emails of people telling me their stories, asking good questions, and thanking me for being open about it because it has helped them. It can be hard to put ourselves out there, but I never want people to feel alone. Tough conversations that help others are worth it to me. Ok, let me start… my husband had open heart surgery May 15th, 2020 while in the middle of a pandemic. Like anything of this magnitude, it was an experience that will stay with my family forever.
My husband had a faulty valve and Afib that had been previously diagnosed. We knew with some testing that he also had an aortic aneurysm. Because of this we knew that open heart surgery was in his future. At the time, we didn’t know though that a global pandemic was heading our way.
In October 2018, my husband had a cardioversion, which is a procedure to shock the heart to try to get it to beat regularly, sinus rhythm. After that he had been on medication Amiodarone, to keep his heart beating in sinus rhythm, and Eliquis, which is a blood thinner to help prevent stroke. In February 2020, the medication was no longer keeping him out of Afib and his cardiologist had determined it was time for heart surgery. It had been scheduled for March 22, 2020. Well, if you remember, March 13, 2020 is kind of when the wheels fell off of the US and the pandemic really took hold with schools, many businesses, and even Disneyland closing. Because he wasn’t at a complete emergency state the doctors, not knowing what the next few weeks would hold as far as the pandemic goes, pushed the procedure out until beginning of April. Beginning of April came, and much to my disagreement my husband chose to push it out to May because on the news at the time was constant Coronavirus updates, death tolls, and news about the hospital spread unknown. When May came we all knew it needed to happen.
Let me add at this point, that my husbands cardiologist and thoracic surgeon are located in Scottsdale, AZ…and we are not. We live in a completely different state, but this was my husband’s trusted cardiologist and friend for years, so there is no one he wanted to put his life into the hands of (especially during a pandemic) except for him. Before the pandemic, when preparing for the surgery, we went back and forth on what this would look like when he had his surgery because our daughter is 10, in school and heavily committed to dance. We had gone through scenarios of my mom staying with her while we went to Scottsdale, but had a hard time reconciling the idea of her being away from us A. for that long and B. for such a major surgery for my husband. While the pandemic greatly complicated matters, school and dance having to social distance and being on Zoom gave us the opportunity we needed to be able to all travel together to Arizona and no one had to be apart (except for the hospital, but we will get to that in a bit). So we loaded up the car and drove the 13 hours to Scottsdale, Arizona. We packed a cooler with food to eat along the way to limit our exposure to the public. We rented a house there, which again during a pandemic complicates things a little. I remember getting to the house after driving for 13 hours and having them wait in the car while I went in and disinfected and wiped down everything. Image may be NSFW.
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My husband’s surgery was actually suppose to be on Thursday, May 14th. It had been scheduled for the morning, but was pushed to 1pm, which meant we had to drop him off at 11am. That morning was gut wrenching. We couldn’t go in the hospital because of covid precautions. We pulled up out front and gave our hugs and said our goodbyes with tears pouring out of all of us. I had a really hard time wrapping my head around the whole idea of pulling up to a door and saying goodbye to my husband for him to go in by himself to have open heart surgery and us just driving away. My daughter and I drove away…to the parking lot across the street to hold each other and cry. We went back to the house to wait. I was told by the hospital that someone in the operating room would call periodically to give me the progress of the surgery. At 1:15pm my phone rang and it was my husband’s cell phone calling me. I was thinking he was already in surgery so I quickly answered and it was him saying they were running a little late, but calling to say he loved us and they were preparing to take him into the OR. He had a slight sedative to relax him and I could tell. Around 4:00pm I am getting a little antsy that I hadn’t hear anything yet and my phone rings. It is my husband’s cell phone again. I was like WTF? He said that the surgeon had been in an emergency surgery that took far longer than expected and they could do the surgery that evening, but they recommend doing it first thing in the morning so the surgery team is fresh. Of course we agreed, a fresh surgery team is always ideal instead of a tired team. Because he was already admitted to the hospital, had his IVs in, his sedative in, and his covid test done, they were going to keep him there in the hospital for the night and take him to surgery for pre-op at 4:30am and surgery at 6:30am. That night was rough, because we were separated, but no surgery had even taken place yet. My cell rang at 4am and it was my husband starting to mildly freak out. He said, “maybe having the surgery pushed was a sign I’m not suppose to have the surgery and you should come get me.” I said absolutely not. You are having the surgery and it will be fine. That was the last time I was able to talk to him for days.
I waited for my phone calls, but didn’t receive any. So after 6 hours I called, teary and scared, and the hospital connected me through to the operating room. The nurse told me he was still in surgery and doing well. She said that they were just taking him off the bypass machine and they would call when they “close him up”. 3 hours later I still hadn’t heard. Teary again, I call the hospital and was told that he was out of surgery and in the ICU and “surprised no one called you”. I was really annoyed that because of the hospital covid rules we couldn’t be there and I was promised phone call updates and never received any. But I was relieved to know my husband made it through surgery. The ICU nurse told me that hopefully around 11pm he would be off the ventilator and they would help him call us. Phew, I was relieved that surgery was over, he was in the ICU, everything was all good. We made it through the hardest part right?
At 10:48pm my phone rang…but it was my husband’s cardiologist and friend calling me. I answered the phone and could tell he didn’t sound good and my heart felt like it was stuck in my throat. I feel like moments like this is something you see on TV or think about how it might feel, but it was REAL this time. My whole body started uncontrollably shaking. He told me that my husband was extremely acidotic and that his kidneys never started working after surgery. They said that his heart, blood pressure and body in general was having a very hard time. I didn’t know what this meant so I just flat out asked, “but is he going to be ok? He isn’t going to die right?” and when I heard back wasn’t reassuring. He said, “well he had extensive heart damage and heart damage can be hard on the kidneys, so he came out of surgery in critical condition and he is still in very critical condition.” This was not the answer I was looking for. At that moment all I wanted to hear was that he won’t die. He told me that he won’t leave my husband’s side and would stay all night to personally make sure everything is done that can be done. I got off the phone, hugged my daughter, and told her we needed to pray.
I didn’t sleep all night. Around 2am I had another call from the cardiologist saying that it was basically the same thing, but that he was still there with my husband and talking to him, even though my husband was still on a ventilator. The next call was to tell me that my husband hadn’t got any worse, so I took that as a plus and continued to pray. The whole next day was basically the same thing. Still on a ventilator, kidneys still not working. They pumped him with tons of fluids trying to get the kidneys to kick in because urine output was extremely poor. I have never talked to people so much about urine output as I did in those next 4 days. Meanwhile, I am in a location that I don’t know, in a house that isn’t mine, unable to visit my husband in the hospital, and with our 10 year old daughter who every time my phone would ring was worried her dad had died. I wouldn’t wish this situation on even my least favorite person. The days seemed very long waiting for news which rarely came and I would call and the ICU nurse would try to nicely tell me that they know how hard it is that we couldn’t be there and they are taking good care of him.
A couple days later the nurse that morning told me that the doctors were planning to take him off the ventilator later that day to see how it goes. This was encouraging. I waited and waited and called back and the ICU nurse said that he was still very out of it, but that she would go in and help him call us. We heard his voice for the first time in days and both my daughter and I started to bawl our eyes out. It barely sounded like him and he was very out of it, but it was a gift to hear him talk. Later when I talked to the cardiologist he said that it was troubling that his kidneys still weren’t functioning and that he might have to start dialysis, but they want to avoid this if at all possible. I had no idea that kidney failure was something that could happen after open heart surgery. Going into surgery we were told he would spend a few days in ICU and then a few days in regular hospital room and then would come home. We were also told that within the first 24 hours after surgery they get them up out of bed and want them moving and how important that is for recovery. So after days in the ICU and knowing that my husband couldn’t get out of bed, I was mentally panicking at how bad this was. When day 6 came, and this had been the day that before surgery we thought he would be coming home to us, came and went and he was still in the ICU I was battling a major panic attack.
Because of all the fluids they pumped into him to try to get his kidneys working, but they still weren’t working, his body was very very swollen with fluid retention. He went into the hospital weighing 221. He was 263 at this point from fluid. He was miserable and didn’t understand what was going on. His dexterity from being so swollen was so bad that he couldn’t even grip the phone and kept dropping it when we tried to FaceTime. This was the lowest of the low. One of the things that I had read and what the doctors told us all along is that the mindset is so important. That the patient needs to stay positive and never give up. This FaceTime call was when I could feel my husband giving up. He called me early the next morning and was so mad. Mad at everything. He was convinced that he would be an invalid for the rest of his life and was so upset that I told him that fateful morning before the surgery that I wouldn’t come get him and he needed to have the surgery. I felt like I was carrying the weight of the world on me then. I got off the phone, called my best friend, and started bawling that my husband thinks I ruined his life and what if I did? What if he is like this forever? We all need friends like this because she calmed me down, assured me things won’t stay this bad. I then called the cardiologist and told him that I was worried Joe was giving up and that he thinks he will be an invalid forever and could he please talk to him and check on him.
The next day my husband’s cardiologist’s wife called me, who is also a friend. She asked how we were doing and asked if I needed anything and told me that her husband went to my husband and gave him some tough love telling him he can’t give up. Weeks later I found out from my husband that the cardiologist basically had a come to Jesus moment with him and didn’t sugar coat it. He said that if my husband hadn’t had the surgery he would’ve been lucky to make it 6 more months. My husband’s attitude got better after this. The extra fluid made it really hard to walk, but he got up and tried. It was hard for him to eat, but he tried. Being away from him and not being able to be there in person to encourage him and help him was the hardest part. He called me after trying to eat lunch one day and was so frustrated that because of the dexterity problems he spilled more food all over him than he was able to get in his mouth. I got off the phone and cried, yet again, because if I was allowed to be in the hospital I could’ve been there to help him eat. I called the ICU nurse and told her that he was having a really hard time gripping anything because of the extreme swelling and asked if anyone could help him the next time. She said they know that it’s hard family can’t be there because those are the kinds of things that they normally help with, but she said that got him cleaned up after he spilled all over and changed his gown. That didn’t make me feel much better. Image may be NSFW.
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Then the ray of light we had been praying for. His kidneys weren’t getting much better, but they weren’t getting much worse. The doctors felt he was stable enough to move from the ICU to a regular hospital room. He spent 8 days in ICU and it is like a fishbowl with glass walls and sleeping is hard to do. I was hopefully that being moved to a regular room would help correct his sleep pattern. Spoiler alert, it didn’t. But at least it was a little quieter in that room and the best part of all, he had a window! After not seeing him for 9 days, not being able to visit him IN the hospital, we decided to find his window and be outside. With the help of a nurse, we figured out where on the hotel complex his window was. My daughter made a sign and it was glorious. We called him on the phone so we could hear each other and he came to the window and we were able to see each other. He was on the second floor, but it worked. We did that several times a day.
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My husband’s doctors never started dialysis. Very very slowly the kidneys started to wake up. He was begging to go home. He just wanted to be with us and knew he would be in a much better mindset with us as well. He was very depressed from being in the hospital for nearly 2 weeks without being able to see us except through a window. (Looking back, I think we realize how much the pandemic has effected all aspects of life, but one thing I didn’t previously think about was how having loved ones around you in a hospital can help the healing process.) The doctors agreed with him, but worried if I was up to the task of the level of care he needed. I’m not going ton lie, I was 100% scared of that as well. I had a conversation with him that I wasn’t sure I knew what to do and with no formal medical training I was worried I wouldn’t be able to do it. He was so adamant that he needed to get out of the hospital that I agreed to do whatever I needed to do. Image may be NSFW.
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He was released from the hospital weighting 252, still 30+ extra pounds of fluid retention. Walking was painful and he had to be on a super strict food and liquid diet to help control the swelling. I had to try to wedge compression socks on his tree trunk legs (tip: using a plastic bag helps slide them on a little better). Showering, walking, sitting up, EVERYTHING needed assistance…but we did it. We made it work. He still had some fluid in his lungs which made sleeping hard. He couldn’t lay down. When he would actually fall asleep he would wake up every hour because of the diuretics he was on to help reduce the swelling. I was so tired that I gave up trying to sleep in a bed and just slept whenever I could, which usually meant on the chair next to my husband and he would just wake me up when he needed help. One night I woke up with him trying to get up and move around by himself and got mad for not waking me up to help him. He said that he just felt so bad because he could see how tired I was and wanted me to be able to sleep. I agreed that I was exhausted, but that I would rather him wake me up than having to call an ambulance because of fall or injury.
We all were VERY homesick. We missed our own bed, our own kitchen, and we were tired of wearing the same few things over and over again. My daughter had been doing distance learning (more or less) and dance on zoom this whole time. She was in tears after every zoom and I couldn’t blame her. She was tired of it all just like the rest of us. Most of all we missed our dog, who is like our second kid. He was staying with my mom and all we wanted was to be home. My husband had regular doctors appointments and after a couple weeks of being out off the hospital our sanity was wavering. It was 110 on a daily basis in Scottsdale, which meant I would take my husband outside at 5am to walk and even then it was still in the 80s. We wanted to go home so bad we were all cranky because of it. My husband was sore, but willing to do whatever needed to be done to go home. At his next set of doctors appointments it was our goal to get the OK for us to travel home. Because of the pandemic, telemedicine visits were normal and we could meet with his doctors that way. His surgeon was worried about blood clots forming, but said we could make the long drive home as long as we stopped every couple hours for him to walk around. We had to have his INR checks and follow up appointments booked at our local doctors before we were allowed to leave. We jumped through all the hoops (I might have literally begged once or twice for our local cardiologist to get us in sooner than they were originally willing to do). Once we got that ok I loaded the car up with everything that night so we couldn’t the road at 4am the next day.
I never said this out loud to anyone, but I want to be real here in case anyone reading this is going through the same thing. It was a long drive, but we made it. I was so mentally, emotionally, and physically exhausted by the time we got home that I just went to my bed and cried. I cried out of exhaustion, but also tears of joy. I was so happy to be home, but most of all happy to be home with my WHOLE family. When my husband had been in critical condition, one of the thoughts that came to my head, that is still disturbing to me to this day, was “if my husband dies, I don’t know if my daughter and I will ever be able to go home.” I couldn’t even fathom getting in a car, just the two of us, and making that long horrible drive home. I don’t know why this kept coming into my head, but it did. So the day we made the drive the 3 of us and we were home was like my prayers had been answered.
The road since has been up and down, but my husband lost all that fluid weight and then some extra pounds too. He is very good about regular exercise and… mostly good about his diet. He is on coumadin still and is good about going for his INR checks. He has cardiac rehab twice a week. He takes all his meds each day and we are extra grateful to not be in Arizona heat anymore.
About a month after being home he had an appointment for just a general checkup with his general practitioner. She ordered general blood work and we expected everything to be… well general. But of course, it’s 2020 so that wasn’t the case. Something showed up that spurred the doctor to order some other labs and blood work. The results came back and we were referred to a hematologist/oncologist. Now we were both like, WTF? Yep, here we go again. Multiple myeloma. To be honest I don’t think I even knew what this was prior to this diagnosis and had to google it. (Word to the wise: don’t google it. It’s scary and horrifying to read about it on google).
I was mad. I was so so mad. I yelled at God that how could this happen just a couple months after everything we just went through. But here we are, this is where we are, so after being mad I put my head down and focused on what needed to happen now. Bone marrow biopsy, PET scan, and many many blood draws and various lab works later we know it hasn’t spread to any organs and there are no bone lesions. THANK YOU GOD. It is just another battle, but we are getting through it and I know that we can get through anything. (I would like to add a middle finger to 2020 though!)
We are super incredibly lucky for the support system and friends what we have. I am so grateful and there are no words to truly express how loved and supported we felt, even while being miles away from home and while social distancing in a pandemic. Without that support I don’t think we would’ve made it. With daily checkins from friends, cookies delivered to our rental house, groceries, DoorDash gifts, cupcakes, fruit basket, and so much more, it kept us going. (Not to mention a treadmill, but that is a whole blog post on it’s own coming soon!) Thank you to each and every one of you.
If I could share ONE thing I know, that is to be your own, or your loved ones, advocate when it comes to health matters. You sometimes need to push to get what needs to be done. Your gut is often right. If you feel like something is off get it checked and checked again. If you don’t get the call you are waiting for, CALL. If you feel like you haven’t heard from a doctor and you should have, check in with them. Our medical workers are often so overworked, have so many patients, that things can slip through the cracks. It is usually to no ones fault other than the medical system we have in place in this country that had created this atmosphere. If you aren’t your own advocate, no one is going to do it for you.
If you made it to this part of the blog post you deserve a medal! I will periodically keep you updated, per usual. I hope you all are staying healthy during this crazy year. I can’t wait until we can all safely be together again.
Here are some other relevant posts:
Waiting for BRCA Gene Mutation Test Results…
My BRCA 1 Test Results Are In…
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