I didn't know that I would be the wife of a heart patient. I'm sure most wives of heart patients don't know that is what they are going to be eventually. My husband is young, only 38 (well 39 here in a couple of weeks). We all spend so much time worrying about Cancer that heart disease often gets overlooked. We like to eat good food in our house and heart disease never crossed my mind (even though it does run in my family AND is the number 1 killer of women!)
Back in the beginning of November 2012, Josh was experiencing symptoms that he thought was Pleurisy (from a diagnosis just a couple of years earlier). He had tightness in his chest, shortness of breath, chills. He drove himself 35 minutes to the closest emergency room and told them his symptoms. They ran some tests to find his Troponin levels were elevated. They were going to keep him overnight for observation and then perform a stress test the following day. At 4 am, Josh's heart stopped for 7 seconds. His nurse came running in to check on him. His heart started back on it's own. They decided to do an angiogram early to figure out what was going on (probably a blockage) and fix the problem. They got more than they expected when they started exploring my young husband's heart. He had 4 very clogged arteries. They placed a stent in the most important one to keep some blood flowing. The plan was to do bypass surgery in a few days. After a heart attack, they like to let the heart rest before rushing into a surgery. This was November 7th (Wednesday) and they were talking about doing a surgery the following Monday or Tuesday. Josh was in a very bad way.
This is where things got a tiny bit challenging. Josh had driven himself to the emergency room. He went to the only emergency room he had been to before. It was at a small, older, hospital. It was at a hospital he and I had both talked about before and agreed not to have any large procedures done at if that was ever a situation to be decided. My dilemma was that first, Josh was very medicated and not very healthy. This hospital he was at had already "picked" a surgeon who was going to come in and meet us that day. I've only ever been the patient, never the spouse of a patient. What are our rights? What are your rights as a patient, as a spouse? I didn't know what they were. Did we have the option of choosing another doctor? What about moving Josh to another hospital? I was lucky and had 2 angels who had gone through serious health problems with their husbands and had to previously make serious choices. They both had incredible advice and stories to help me work off of.
I decided at 2 am Thursday morning I would do as much research as possible, make as many calls as it took, and get Josh transferred to a hospital that would have much more experience in regards to heart surgery and younger patients. The first call I made was to Baylor in Frisco where I had Matilda. The girl there told me that they weren't equipped to do heart surgeries. I asked her what our options were because I didn't know where to start. She said as patients we were allowed to pick who we wanted to go to and where we wanted to go. I asked her what she thought of the hospital he was already at and she started in with "welllllllllllll legally I can't say...." And I lost it. So she said, "Well, to be honest I wouldn't, and none of my coworkers would ever have any type of procedure done at that hospital". She told me that she had seen my phone number came up as a California number. She said that if she were in Josh's situation and she lived in California, she would actually fly out to Texas to go to the Baylor Heart Hospital of Plano. She gave me all of the information and told me to just talk to a floor supervisor there and they should get me information on how to proceed. All of our out of state friends had been saying Baylor as well----AND----it was coming up tops on all lists.
Next step was to call the supervisor over at the Heart Hospital. She highly recommended a surgeon by the name of Jett and told me to quickly get Josh a case worker at the hospital he was at. She said that they would help me facilitate a transfer. She said that she thought he still did some surgeries there and the transfer would be easy. Well it turned out that he no longer did surgeries there at the hospital Josh was at. I was able to get the ball rolling with a case worker and with his office and with the Heart Hospital. Everyone pulled together so easily and we had Josh transferred by the next morning.
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When I arrived at Josh's new room at his new hospital on Friday, I went from feeling like I was leaving my husband at a dumpy nursing home and just upgraded him to a 5 star hotel. The hospital was so high tech (I will post the VHS story from the original hospital at a later time). We met with his amazing surgeon that day. He wanted to do the surgery Saturday morning because Josh's case was so serious. He said that if all went as planned, then Josh could be home as soon as Wednesday (which was perfect because Mom and Dad were leaving for France Wednesday for Thanksgiving).
I arrived at the Heart Hospital at 5 Saturday morning. They got Josh prepped (managed to get his wedding ring off, which I promptly put on my necklace) and we said our goodbyes and good luck. I went into Josh's surgery extremely confident. I really thought it was going to be cake. His surgery started around 8. The nurse had my number and was going to update me as things progressed. The first time she called me, she let me know that he wasn't really stable and while they were trying to avoid the heart lung machine, that they had to go ahead and put him on it. A few hours after that (he was supposed to be done by noon), the nurse let me know that Dr. Jett was going to come out and talk to me. When he came out into the waiting room, he let me know that he had done the grafts. He did 3 and left the original stent. He used 2 mammary arteries and then one vein from Josh's leg. Josh was not stable and all and he told me that Josh would not make it if he didn't intervene with two devices---the first a balloon pump, the second a device called the Impella. The impella is this skinny pen like structure that has a tiny propeller. It gets sewn into the Aorta and helps propel oxygenated blood from the heart to the rest of the body. Josh's surgeon is one of the top guys for robotics, so he used robotics to insert and sew in the Impella. The nurse called as soon as he was being sewn up and as soon as he had a room number. The waiting room cheered when Josh was assigned a room number.
It wasn't until around 5pm that day that his surgeon came out to talk to me and it was almost time to let me see Josh. He told me that Josh's heart was in really bad shape. After he had done the grafts, he said instead of getting strong, good beats, that his heart was just "flubbing" along. He decided at that time an intervention with the pumps was completely necessary to Josh's survival. He said that they were going to attempt to get him stable over the next couple of days. They were going to monitor things and hopefully, Josh's heart would start doing work on it's own. He said that there was a possibility that Josh's heart wouldn't start working on it's own and if this was the case, we were going to have to transfer to Baylor of Dallas and wait for a heart transplant. Josh's Ejection Fraction at the time of surgery was only about 15. (55-70% is normal) When I went to see Josh for the first time of the surgery, nothing could have prepared me for that. It wasn't the same as it is for patients who have just come out of a bypass surgery. The entire back half of his wall was machines and IVs and drips and more machines. Josh was in a special situation with the Impella because not many of the nurses are trained to use it. It also meant that he had one special nurse with him at all times, 24 hours/day. He had a breathing tube too.
I went home that night and genuinely thought that we would not be bringing him home. Ever. I thought this was it and his heart was not going to make it and I would never get to talk to him again. I got Matilda to bed, knocked out as much laundry as possible because I didn't know when I would have a chance to do that again. I prepped all Matilda's things for the next day and then slept a couple of hours.
I had to wait for Mom and Dad to come up Sunday morning, so I left a bit later for the hospital (which is an hour away from us). I got there around 10am expecting no changes from the awful day before. Somehow I managed to get there just as Dr. Jett was making rounds and had already been in to see Josh. He was sitting at the computer outside of Josh's room. I leaned around and asked how he was doing. He stopped typing, Turned around and looked at me with a huge smile and said that he actually had some of his own heart function today and that he was getting ready to take out the balloon pump. I genuinely do not think that he expected Josh's heart to ever start working on it's own again. That Sunday was a huge day.
Josh continued to make positive progress each day after that. Monday they did a heart echo while decreasing the function of the Impella device to see if Josh's heart would work well for a little while on it's own. It did. So after that, it was decided that the Impella would come out on Tuesday. He would have to go back in the OR and have it removed.
The Impella came out without a hitch and Josh was having good heart function on his own. Josh's breathing tube came out on Wednesday and by Friday they got the ball rolling to have him moved into a rehab facility. Josh was alive!!! He had/has a long road ahead of him---but he was actually moving on from surgery and the hospital.
It was slow moving and healing once we got Josh home, but he has done extraordinary. He began regular cardiologist visits with a whole slew of medications to help his body function normally. He attends cardiac rehab 3 times a week. Right before a recent "tune up" Josh's EF was 45 %. There is hope that this number is even higher after his tune up.
So welcome! I will be sharing our journey on here from now on. I am going to share with you some heart healthy recipes we love. I'm going to talk about our everyday (and even our sweet Matilda---our 18 month old baby girl and our sweet Mitzu---our 9 year old rescued Pug) . It's important to know as a patient and a spouse of a patient that you have options. You ALWAYS have options.
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