Cleveland Revisited

The day had come to head back to Cleveland.  Lou had arranged his travels, so he would be in Cincinnati the day I would leave for Cleveland.  He would drive up and pick me up at the airport and go with me to the appointments the next day.

I finally finished my day at work and rushed home to get my bag, change clothes and pick up Robin. She would be dropping me off at the airport and picking me up the next evening. Rush, rush, rush.

We pulled up at the drop off spot at the airport and I made my way to the ticket counter to get checked in. All went smoothly at check in and through security. I got to my terminal and had a chance to catch my breath and wait for the plane to come in. I finally got on the plane and in my seat. The flight was uneventful and I arrived in Cleveland late that night. Lou was there waiting and we got on the road for the 25 miles into the city and the hotel where we would be staying that night. We checked in and arranged for an early morning shuttle to the hospital.

Morning came quickly, as we were both very tired and anxious to get answers. The shuttle driver dropped us off at the front entrance, and I went in to get checked in at the lab. Dr Thamilarasan had ordered more blood work, ekg and chest xray. I finished all of that and headed down to get my echo done.

The echo lasted a very long time….even longer than normal, as Dr Tham wanted to get extra pictures of what was going on with my heart. After the echo was complete, I checked in for my visit with Dr Tham.

I was called back and vitals and history were taken. We also went over all my medications. I gave the nurse all the copies of labs, xrays, echos, ekgs and visits since I was last there 7 months ago, including my latest echo done at UVa. Dr Thamalarasan came into the room 15 or so minutes later. he was very kind and polite as he always is, but he didn’t sugar coat anything. He told us my heart was failing, my EF was still down around 25% and that I needed to see the heart failure team. He mentioned the “T” word again. He also told us he wanted to admit me and get more tests done….namely a TEE to see what else was going on. Of course I told him I was scheduled to fly home after my appointments that day. He just said lets see what Heart Failure tells me.

So, with my head still reeling, we make our way up two floors to see yet another doctor….one specializing in heart failure.

Dr Thamalarasan had set up this appointment with Dr Wilson Tang. I was called back into the exam room by the nurse, vitals and history taken. And then a heart failure fellow came in. She spent about 45 minutes in there with us asking questions, answering questions and getting to know me and my history. She then told us she was going to go out and speak with Dr Tang and that they would be back in shortly.

Soon, there was a knock on the door, and Dr Tang came in followed by the fellow. We went over the same ground and then he told us that I needed to be admitted, I needed to get a right heart cath done, I needed to do another metabolic stress test and I needed to meet with EP.

I’m like….whoa! I have a flight to catch in a few hours, and I’m scheduled back to work tomorrow! Dr Tang took this all in stride and said, that’s fine…then you will need to come back within the month and get this all done. But, he did want me to meet with the EP that afternoon before I left. He had already had it arranged. He also said that my heart had become stiff and that I would be needing a transplant. He adjusted a lot of my medications…took me off of some and added others. He explained, its a balancing act at this point. Either extreme, too much or too little, would cause even more heart failure symptoms. So, we would try this new medication regimen. Dr Tang spent over an hour with us. He had us plenty scared. Lou asked some questions, but mainly, if I were to stay 1) could it be done as outpatient, and 2) when could we start and how long would it take. Yes, all could be done as an outpatient and the EP he had in mind wanted to do some more invasive tests as well. It would depend on what he told us and what he wanted to do. So, off we went to the next appointment….the EP.

So, down we go one floor to the EP department. I get called back into the room and first get my device interrogated. Then I get put into a room. Yet another time that day, we go over my history and problems. The nurse leaves and a few minutes later, Dr Bhargava walks in and introduces himself to us. More questions and answers between us, and then he gets down to business. His feeling after looking at my echo, is that the myectomy caused a complete left bundle branch block (very common post a well executed myectomy) and that my heart just couldn’t compensate. He said I have an asynchronous left ventricle….meaning my left and right ventricles (bottom chambers of the heart) weren’t beating in synch, which is, what he felt, causing the lowering EF. His suggestion was to put in an upgrade to the ICD I already had in place. Essentially, he would add a 3rd lead into my left ventricle and pace both ventricles as close to 100% as possible. He also wanted to a procedure to make sure that my arteries were clean and that he would be able to thread the new lead in without issues.

I put a call into my supervisor, and she was very sympathetic and accommodating. So all of these additional tests were scheduled for that week. Lou and I were able to escape back to the hotel to try and organize our thoughts with these new developments. My mind was certainly reeling!

The new tests were scheduled quickly. Although, I would need to be off my coumadin for several days for a couple of them….those tests were scheduled for later in the week. So, another week of fun filled testing in my future! Yippee!

I got the tests done, and it was decided that I would be a great candidate for a BI-V upgrade. It was hoped that the Bi-V would help me keep my heart for as long as possible (a transplant has a shelf life), or even help prevent that from ever happening! The implant was to be scheduled for about 5 weeks later, the first opening Dr Bhargava had in his schedule. My other tests showed what we already knew. My heart had stiffened, my mitral valve was still leaking mildly, and that my aortic valve had started leaking. So, the race was on trying to preserve my heart for as long as possible.

The fun just never stops!

The Move

Oh, don’t get me wrong, but moving was NOT something I wanted to be doing. I had finally found a medical team that I not only trusted, but liked a whole lot, my mom was still going to be living in Utah….and she had no close family there to watch over her, and I HATED Virginia. This will be my 3rd time living in Virginia, and I had had not so pleasant experiences while living there. So no, I wasn’t looking forward to the move.

Luckily, I was able to transfer with my job. I would be doing the same thing, and only about 45 minutes from my step son and his new wife. I would spend my time trying to find a place to live and getting it ready to house us and the critters, while Lou would get the house and critters ready for moving.

We decided it would be better to haul my car out and load some of the stuff I would need into the car. I had found an airbnb to stay in that would be centrally located for my job and also to begin house hunting. I went to work that Friday, and was able to say goodbye to some of my friends and coworkers. A few of my coworkers planned a small get together at a bowling alley later that night. It was fun hanging out with them and getting to see a few more people. We all had a great time, but tears were shed.

We got everything loaded that was going to be heading out with this first trip, and we left out Monday morning. It was a somber 3 days of driving, but we finally made it to Virginia. Unfortunately, Virginia had just gotten a major snow storm, and we arrived the day after. We are used to snow, but Virginia, not so much. They had received about 15″ of snow and everything was shut down. We unloaded some stuff at Louis’s and put it in his attic, and drove to where I would be spending the next little bit. I finally got to meet Robin in person, and she showed me around her house and showed me my room. We got the rest of my stuff unloaded and I prepared to settle in. Lou spent that night with me, and then headed off the next morning as I headed in to work.

I still had heard nothing back from UVa about an appointment or even setting up an appointment, and Dr Afshar had wanted me seen within a month. So, I continually called UVa and left countless messages, but I never got a call back. Finally, one day, towards the end of January, I got a hold of a real person. I told her what I needed and what my doctor wanted. She said the soonest they could get me in would be mid March. And she also told me that she needed all my records. I told her that Ashley (Dr Afshar’s nurse) had already forwarded them. She told me that they were never received. I had an awful feeling that things weren’t going to run as smooth for me out here. So, I contacted Ashley, told her that my records had never been received, and asked if she could send them again. I also told her when the earliest that they could get me in would be. So, they would have to continue to be my “doctor”. She was appalled that they couldn’t or wouldn’t get me in sooner with what was going on. She also told me she would pass this along to Dr Afshar.

So, two weeks later and I received my appointment schedule. Nowhere on there did I see an order for an echo. So, I called UVa again. I had to leave a message. A week later, I still hadn’t heard back, so placed another call. This time I got a person, but she said all she could do was leave a message for the nurse. Another week passed and again, nothing. So I called. I wouldn’t hang up this time until I spoke with the nurse. When she finally got on the line, she was very curt and rude. I told her what I wanted. She told me that the doctor would have to order the test and that my insurance wouldn’t pay for it. I got angry! I said, look, I know what my insurance will and won’t pay for, as I’ve been dealing with this for several years. My EF has dropped drastically, and by the time I get in to see you, it will have been another 3 months since I have had one done. And, my doctor didn’t have time before I left to figure out why! Now, you talk to the doctor and get an echo ordered. I will be taking time off from work and driving 3 hours to get to my appointment. I want to do everything at the same time. And I told her to call me back when it was ordered. I was fuming!

Well, I got my way, and the echo was ordered. The day came for my appointment. I had high hopes and expectations. I was hoping for an answer to my EF problem and I was also hoping I would get solutions to making me feel better again. I drove up to Charlottesville and found a place to park. I was early for my appointment, so I expected to wait my turn. But, once I checked in, I was called back fairly quickly. The echo was my first test. I really liked the echo tech. We spoke and laughed while the testing was going on. It helped pass the time. She also told me that I would really like Dr Kramer. Again, I was very hopeful that this would be a great visit. My next visit was with the genetic counselor. I told him I had already had the test done, and it was inconclusive and that I had already spoken to a genetic counselor. He asked if it was ok for him to talk with me…sure….as he had a new counselor he was working with. Again, I spent another great 1/2 hour with a member of the HCM team. Things were looking up. I also met with a pharmacist, and we went over my med list. My next visit was with Dr Kramer’s nurse. And here is where things started to go very wrong. She came in, introduced herself and then never tore her gaze away from the computer screen. She spent a total of 5 minutes with me, and told me Dr Kramer would be in as soon as he looked at my echo. Great, I would start getting answers.

Dr Kramer came into the room, and quite honestly, he was very nice and pleasant, but he really didn’t give me any answers. He was about ready to leave, and I had to ask him if he had looked at my echo. He told me he had, so I asked about the EF. He told me it was about 30%-35%. Now, I know this is just preliminary and that it still had to be officially read, but I was shocked. So, I asked him when he wanted to see me again. He said, “oh, I’ll see you in a year.” I KNOW my jaw hit the floor! I looked at him and said “My EF has gone from 65% down to 35% in 6 months, and you want to see me in a YEAR?!?!” I was honestly floored by his response. I then said, “I just moved here and don’t even know where I will be living and do not have a local cardiologist established yet.” “Oh, then I guess I can see you in 6 months.” I was shocked. I then asked about my coumadin and how we would go about transferring that care. He told me I would have to go to the coumadin clinic. I’m like, “I live 3 hours away! I cannot take off a day of work every month to just get my finder poked!” He told me that the HCM clinic did not manage coumadin.

As I left, I set up my follow up appointment, but my mind was already whirling away. As soon as I got into my car, I called Ashley and explained the coumadin thing….she was shocked, too, but told me that they would keep managing it until I got established elsewhere. I then called Lou and told him what had happened. I asked his opinion about contacting Cleveland. He was in agreement.

The next day, I sent an email to my HCM doctor at Cleveland Clinic, asking if he would mind taking me on as a patient. I got an email back a couple of days later, saying that was fine. As soon as I got that confirmation email, I called UVa and canceled my upcoming appointment. I was so very glad that I could go back to Cleveland. I sent an email back to Luwanda, explaining the situation. And that I would forward the official echo results, once I received them.

I received the finalized reading a couple of days later, and noticed my EF reading was actually 25%. I copied the results and emailed it to Luwanda. She called me back the next day, and told me that Dr Thamilarasan had rearranged his schedule to get me in 10 days later. Not only that, but she was setting up an appointment with the heart failure team. If I couldn’t do it then, the soonest I could come in would be the end of May. I said, “He wants to see me sooner, rather than later, doesn’t he?” “Yes”. So, I had to contact my supervisor of a couple of months and let her know I would need to take a day off already. I would work the day before, fly out that night, do my appointments the next day and fly out that night to return to work the following day…….that was my plan, anyway. But you know what they say about plans….”the best laid plans of mice and men often go awry”….

And boy, did it!

The start of end!

Healing Time

We made it home! Thankfully, without incident. I was exhausted. My mom had set up a temporary bed for me on the couch. It would be much easier to get up while already partially sitting up than trying to get up from a laying position on the bed. Plus, a lot less stairs for me to try to traverse. All went well for the first couple of weeks. I did a lot of sleeping. But I tried to walk outside as much as I could. I was able to visit the horses from outside the fence line, as Lou wouldn’t allow me to go in with them. Even though all of the were very friendly….too friendly at times, we didn’t want to chance them running into me, knocking me down, or head butting against my chest. Daisy was able to come out. Her, we both trusted to be gentle. I had a followup with my doctor at the end of a month. I met with him and my favorite nurse practitioner. They were both very pleased with how I was healing. Jeff put in an order for me to be able to begin cardiac rehab. Since we were there, we walked across the hall before checking out to set up my appointment times for the next several weeks. I was to start the following week. Gulp! But, I was happy that I was going to be monitored during exertion. I was going to be able to see what I could handle while doing things.

The following week began my physical therapy. I had no idea what was going to happen. So, we got there early. The receptionist had me sit down for a few minutes while she called one of the techs over. The tech got me hooked up to the telemetry and had me start with the bike. He explained that if I felt faint, or if my heart went into certain rhythms, they would stop me. They would also be monitoring my blood pressure throughout the exercise. He asked if I had any questions…nope. He showed me how to get started and I was off. I wasn’t able to do much for the first several visits, but gradually, I was able to build up my stamina and was able to add the treadmill to my activities. Most of the time, I was able to meet or exceed the goals they set for me. Some days, I wasn’t. But I was told this was to be expected. Good days, bad days!

At one point, about 5 weeks into therapy, I saw my doctor and another of my favorite nurse practitioners in the hallway. They both spotted me and came in to see how I was doing and to say hi. Dr Afshar had another appointment to get to, but the NP stayed a few minutes longer. I told her I was doing much better and ready to get back to work. She told me she would speak with Dr Afshar and get back with me. A couple of days later, I was released to drive and to return to work. They wanted me to start out slow, so half days for a week to see how I did. After that, if all ok, I would be released to go back full time. YIPPEEE!!

I did well that first week, so I was able to return to work, without restrictions. My incision was healing very well, I was having little to no chest pain. I was still taking my Tylenol 3 times a day, but that was mainly for my arthritis pain, as I couldn’t take anymore anti-inflammatory drugs. The next month to 6 weeks passed without problems. I was still tired when I got home from work, but I pretty much went back to my regular routine. Then, around Thanksgiving, I started feeling run down again. I didn’t know if I was pushing too hard, or if I was coming down with something. My followup appointment with Dr Afshar was coming up December 8th. I already had my order for bloodwork and I knew they were going to be doing an echo. I would wait until then to see what was going on. I didn’t really say anything to anybody yet. I would wait until I had some answers.

December 8. I got to my appointment early, and as typical, I was called back for my echo a few minutes later. After my echo, I was put into a room and checked in. The pharmacist came in and we went over my medications. Asked if I had any questions about anything, no. Then Jeff came in. It was good to see him, as I hadn’t seen or talked to him in a while. We spent a few minutes catching up on things. He had copies of my surgical reports that we went over. The labs I had had done, and I asked him a few questions about my pathology report from Cleveland. (the muscle they removed from my myectomy was sent to pathology). Jeff looked at it, and told me it showed classic HCM, but to talk to Dr Afshar about it. Jeff left to go report to Dr Afshar, and about 10 minutes later, they both came back into the room. Dr Afshar asked how I was doing, any new signs/symptoms, and asked if I had any questions. We talked a bit about my labs and the pathology report. He confirmed what Jeff had told me. Then we talked about my echo results. He was pretty concerned. When I left Cleveland, my ejection fraction was about 60% (very good reading). My echo today (3 months post), showed my EF was down to 48%. This explained why I wasn’t feeling too well, but not why it had dropped. He also said it appeared that my mitral valve repair hadn’t held. They could see a big stream on the echo. Dr Afshar wanted to do another type of echo, called a TEE (transesophageal echo), where they would pass a scope down my throat to get a more direct look at my heart (without bones and extra muscle to obscure the heart muscle). We got that scheduled for a couple of weeks later, as he wanted a particular doctor to perform the procedure, and that was the soonest he could fit me in. Unfortunately, it was scheduled a week before I was to move to Virginia.

The day of the procedure arrived. I got to the hospital and checked in. I was taken back to a room and prepped…..had an IV inserted and hooked up to the monitor. The doctor came in and consented me, and then I was taken back to the procedure room. The next thing I knew, I was awake in a recovery room. Dr Afshar came in a little bit later and explained the results. It wasn’t that my mitral valve repair had failed, but that I also had an aortic valve leak. The two jets combined, which made it appear worse than it was. However, in that 2 weeks, my ef had dropped even further. Dr Afshar was pretty concerned. He knew I was leaving and wanted to make sure I was seen by the COE in Virginia within a month. He had no idea what was causing such a drastic drop in my EF. And since I was leaving, he wasn’t going to be able to really get in to it. He didn’t really do any med changes, as he didn’t know what was causing this. So, he reiterated again, about being seen quickly once I was out in Virginia. He also told me, that he was still my doctor until I got settled out there and to not hesitate to call if there were any problems or issues that came up.

He had his secretary make copies of my chart and sent to UVa. He also wrote up a very detailed progress note explaining the situation and my history. We said our goodbyes and I was discharged. Since I was already there, I went down to medical records to have them copy my chart so I could take it with me. That way, if there were any problems during the drip east, I would have copies of my records to show to whomever treated me.

A couple of weeks later, and I was gone.

Readmission & Discharge

Oh crap, I was back in the hospital and my heart was NOT behaving itself. No more shocks, but lots and lots of PVC’s and NSVT. Maria was in and out all night making sure I was doing ok. Finally morning came, and around 0600 the on call doc came into my room. I had never met him until this moment. He introduced himself and asked how I was doing. I told him, not so good. He asked me why. And I told him because he hadn’t responded to my nurses many pages and I was upset at his lack of concern and care. He was taken aback. “What do you mean?” I asked him if he had put in orders for medication and if he had put in orders for blood work. He was in the process of asking why I would need any blood work, when Agie came in. Agie said he had heard I had been readmitted and he wanted to come check on me. Agie was still working the 5th floor and I was on the 6th. So, I asked Agie if he could continue being my provider while I was in here. He said, “sure, it would do me good walking up a flight of stairs every day.” I smiled and told the other doc, he was no longer needed. I told Agie, that I did not want the other guy to ever come back into my room. He said he would let the nursing desk know. I then asked Agie to explain the plan. Blood work and ekg’s. He told me that the new medication had a tendency to cause a condition called long qt, so they would need to monitor that closely with multiple ekg’s throughout the day. But, they needed to try and get my heart rhythm back under control and this was the best thing to try. They were also going to put me back on a drug called Coumadin (or warfarin)…..a blood thinner, because this was my second episode of afib. I was beginning to feel better…..not happy, but at least I had some answers and a plan going forward.

The next morning, the first doctor came back into my room. I looked at him, and asked what he was doing in here. He said, checking up on you. I told him to leave the room and not come back, that Agie was now my care provider. He honestly looked surprised and started stumbling over his words. I told him he hadn’t cared enough the day and night before to even answer my nurses’ pages, so he didn’t need to be involved in my care. I again asked him to leave. He looked at Lou and asked him why I would do that and what was wrong. Lou calmly and quietly told him he had better listen to me and leave. Nope, still not leaving. He just kept ignoring me and talking to Lou, until Lou started to get up out of his chair. Lou once again asked him to leave. He finally turned around and left. A couple of minutes later, Maria comes in to introduce me to the day shift nurse. And I asked them both to please put a note in my chart, on my door or anything else about not allowing him to come into my room again. Maria explained to the oncoming nurse what all had transpired the night before. I asked Maria if she was going to be on again tonight and if so, could I have her as my nurse again. She smiled and said she would love to.

The next 4 days passed slowly. I continued to walk the halls to work on building my stamina and I continued to do my breathing exercises. Agie came in one morning and told us about an air show that would be taking place that day and the next. He also told us of a meeting room down the hall that we could use if we wanted to watch it. He said since it was the weekend, nobody would be using it, and it had a great view with the all glass wall. So, Lou and I took a walk down there, and sure enough, we were able to watch some of the show. Of course, we weren’t able to see it all, but we could watch quite a bit of it, even though it was in the distance. All in all, it was a fairly quiet 4 days.

Then came the day of discharge. We were going to be heading straight to the airport this go round. And I was so very nervous. My last exit didn’t go as planned! Agie came in told me the discharge orders were in. He wrote me a letter for the airport security. I got my prescriptions filled and the limo was there to pick us up. I admit, I was scared. All kinds of thoughts kept racing through my mind. What if I went in to rapid afib again and I was 30,000 feet in the air? What happens if my icd starts shocking me again? Ughhhh, so not a good feeling.

We finally got to the airport, and into the line for security. Of course, since I was in a wheelchair and just had surgery, I was pulled out of the line to be patted down. REALLY?!?! Two women took me into a room, I showed them my letter from Agie, and they said they had to continue with the pat down. I asked them to please be careful with my chest as I had just had open heart surgery a few dies prior. Fortunately, they were gentle and soon I was back with Lou. We found our terminal and waited. We did have one layover and plane switch, but Lou went up to the counter and made sure we had help for the transfer.

The plane rides went smoothly. My mom was to meet us at home, and a friend of ours was going to be meeting us at the airport to pick us up. I was not allowed in the front seat for 6 weeks to allow my sternum and ribs to heal. So, we decided on using my car, which would be more comfortable and easier for me to get in and out of. I was finally home. It was late, but mom was there and she had tried to get everything ready for me. I was beat. Now, it was time for the healing to begin and hopefully the start of finally feeling better!

Discharge

“Free at last, free at last! Thank God Almighty, we are free at last!”

Famous quote by Martin Luther King, Jr. And yes, I was saying this over and over in my head. Agie had already come in to boot me out of the door. All we were waiting for were the orders and the nurse to come and discharge me. I had a couple of prescriptions, but the pharmacy had already filled them and brought them up to me. I always feel like a caged animal when I am in the hospital, so the seconds ticked by like hours waiting and waiting. Finally, the nurse came in with the discharge papers. We would be flying out Sunday (this was Friday late morning). The ombudsman office had already arranged for transport to the hotel. It was just a couple of miles up the road, so wouldn’t take too long to get there.

As is protocol, I was wheeled down to the first floor for checkout and to pick up the shuttle bus. We got downstairs, and I started feeling “off”. I didn’t say anything, I just figured it was because I was tired after the morning rush around and getting to leave. So, we got into the shuttle bus, and I began to have cold sweats. Again, I figured it was because of the hustle of the morning and just 4 days out of open heart surgery. So, again, didn’t say anything. (Yeah, don’t be like me!)

We got to the hotel room about 20 minutes later. I went to sit down, while Lou checked us in. It was an older hotel with very small elevators. We were up on the 5th floor. So, up we went. By this time, I was in horrible shape. I went to lay down on one of the beds. I asked Lou to turn on the air conditioner, as I was sweating profusely. I also hadn’t had any of my drugs since earlier that morning, so Lou offered to go find me some Tylenol. I had pretty much stripped down to my camisol and underpants. I couldn’t stand the heat. I just lay on the bed waiting for the air to finally cool the room.

Lou got back about 10 minutes later…he had to go down the block to a drugstore to get me some Tylenol. He shook out a couple and got me some water. He asked if I was doing ok. I told him what was going on, and that my heart rate was pretty high, because I couldn’t count it. He asked if he needed to call EMS. I said no at that point, I just needed to rest.

About 5 minutes later, I started screaming. Lou had no idea what was going on. I had just gotten my first ever shock from my ICD. Oh CRAP! Not only one shock, but continuously shocked. Lou was freaking out, I was screaming “Make it stop, make it stop! Oh, please just make it stop!”

Lou called 911, and sat on the bed next to me and put an arm around my shoulder, and I got shocked again. Lou was on the phone with dispatch, and she was asking too many questions. He was getting frustrated, I was getting shocked and I just screamed to her to get the paramedics here and stop me getting nailed! (I don’t think I said it that nicely, however.)

The paramedics got there finally, and hooked me up to the monitor. I could see my rhythm going across the screen. It appeared to be VTach (ventricular tachycardia). I knew my parameters for my ICD were set to deliver therapy (shock) at 200 bpm (beats per minute) and I was nearing that threshold again. I screamed at the paramedics to get a line in me and give me some lidocaine, as I was going to be shocked again. They got me on the gurney and then the fun began. Remember, old hotel, very small elevators….they had to figure out how to get me, the gurney, the equipment and the paramedics down in the elevator. Not sure how they did it, but I was finally in the ambulance.

One paramedic was trying to start an IV in my left arm, and the other was sitting on the jump seat watching the monitor and calling the Cleveland Clinic ER. I was watching the monitor, too…and could see I was nearing the threshold again. I know I shouldn’t have, but I yelled at the medic putting in the IV to hurry and if he couldn’t do it, to give it to me so I could. Then I got shocked. He yelled at me to hold still. I looked at him, and said, “I just got shocked!! How do you expect me to hold still!! Now, get it in me!” Finally, the other medic grabbed some stuff and got an IV in my right arm and off we went back to the place I had left only 45 minutes earlier.

We arrived at the ER in moments, got placed into a trauma room and in comes the whole ER team. Things began to happen quickly. Quite honestly, most of this whole time is a blur. I am pretty sure they sedated me. The next thing I can fully remember, I was being transported to a room. This time on the 6th floor. Lou filled me in on some of the stuff that happened. I had to be cardioverted 3 times before my heart finally went back into a normal sinus rhythm and stay there. Then, we had to wait for a bed to open up before they could transfer me to the floor.

I was devastated! I got up to the floor just right before shift change, so again, a lot going on in a short amount of time. I had no idea what had happened, nor why it happened…..and nobody could answer my questions. This was now about 6pm or so. Around 7pm, my night nurse came in to introduce herself. Maria was the best!

At this point, I still had no idea what happened. I kept asking, but nobody could answer. I also asked for some more Tylenol. Hello, pain, open heart surgery 4 days ago! Maria told me not only were there no orders for Tylenol in my chart, but there were no medication orders at all! WHAT?!?! So, she sent a message to the on call provider and we waited for his response. By 1030 pm, we still had heard nothing. And I still had no idea what had happened. I lost it. I bawled my eyes out. I mean, why me? What the heck did I do wrong to cause this? I was fine this morning! Maria came back in and tried to soothe me as best she could. She was getting frustrated, too. She still had not heard anything from anybody.

Finally about 11pm the EP (electrophysiolgy) fellow came in to my room. He did a quick interrogation of my device. He said, “I heard you had a little bit of a problem earlier today.” He asked me how many times I had been shocked. I told him I didn’t know, as I wasn’t too focused on counting them at the time, but I figured around 25. Lou guestimated about 10-15. The fellow looked and counted, and he said you were shocked 26 times in about 1/2 hour time frame…..and all of them were inappropriate. (meaning I was not in a “shockable” rhythm)

I finally had a name to my rhythm abnormality…..Rapid Atrial Fibrillation with Rapid Ventricular Response. This is also the rhythm I was in when this journey first began, but again, nobody told me. All I had been told is that I was in Afib.

He also told me it was nothing I had done that caused this. Sometimes it happens after surgeons go playing around with the heart. He said they were going to keep me for 4 additional days and do a loading dose of an antiarrhythmic called Sotolol. And that they were going to increase on of my medications that had just been decreased called Metroprolol (helps slow down heart rate). The fellow left and Maria came back in. I told her what transpired and asked if she had heard anything from the on call doc…..nope. But that she was still trying to get a hold of him and she was documenting everything. I also asked if there were any orders for blood work in the morning….again, nope. I was shocked. I would think at least they would want to make sure my potassium was holding steady. My labs the previous morning showed all looked good, but my labs from the ER visit showed my potassium level had dropped below normal. Plus, I was still anemic from the surgery. I was getting mad, and Maria was getting upset. But she was doing all she could do at this point.

I will continue the saga another day, but I will tell you, getting shocked was no walk in the park. It feels as if a horse is kicking you from inside your chest. Lou even felt some of the shocks when he was holding on to me. It was terrifying. And it is something I hope to never repeat again!

Grieving

I am going to deviate for just a moment from my story. This post showed up in Facebook the other day, and so aptly describes what those with an affected by chronic illnesses may go through. I have also copied what I posted on my wall. I hope you take the time to read through this post. And I ask that you remember before judging, try to put yourself in their shoes. You do not know what they may be going through at the moment. Please feel free to respond, copy and share.

Please excuse the F bomb. Micki D (whomever she is) nails it!


This is so very true. Right now I’m so wrapped up in what I’ve become BECAUSE of this stupid disease, it’s hard to be and stay positive. I get the “But you don’t look sick” line ALL the time. It’s hard to look beyond the moment, yet you want so much to “see” 5 years from now and you are “healthy”. I fought tooth and nail to avoid surgery at all costs. I spent 2 years trying anything I could. Ultimately, it was surgery or die for me. Now, I realize it isn’t quite that dramatic for everyone, but it was for me….literally. But…again for me….it was short lived. I felt great for about 6 weeks, the right back down the tube. So the highs were high, until it was once more taken away. And now, here I am staring transplant in the face. I’m being told “you should be happy!”. But I’m not. Don’t get me wrong! Please! Am I grateful? YOU BET! Am I happy? NO!
I am grateful for the technology that allows such precise medicine to happen. I am grateful for my team of doctors, whom have kept me alive the last couple of years. I am grateful for my heart failure doc for his persistence in pushing my listing through the committee. I am especially grateful to Lou for standing beside me through all of this and through all my ups and downs (which there have been plenty). We tend to forget our loved ones while we are going through this process. Yes, we are in the middle of it, but they are going through their own type grief process.

But, I mourn the loss of the life I once knew. Looking back, I can see where I had been symptomatic for a long time, I just didn’t know what it was. And, I mourn the life I will have. I know it doesn’t make sense…..but I don’t know who I am supposed to be. Even though I fight my constraints in the here and now, I know and understand this person. I don’t know how to not to be sick!
But mostly I mourn the person who must die in order for me to live. It saddens me. But, I am so very grateful to their and their families’ willing sacrifice.
So yes, I grieve what I once was, what I have become and what I am to become…..

I just want to say one more thing about this. I don’t think people realize the enormous expense of having a chronic illness. I know my expenses over the last 6 years have surpassed a couple of million dollars. Yes, I have insurance, but it doesn’t cover 100%. And I can look forward to even more expenses after transplant! So, it’s hard….mentally, physically, emotionally and financially. You never know what the other person is going through. So please, everyone, be kind to one another!

Surgery & Post Surgery

It was here. Gulp!

I had to make a phone call the night before my surgery to learn of my scheduled time. I was first on the docket and had to arrive at the clinic by 0530.

After my phone call, Lou and I went down the street to a local diner and had a “last” meal. Between my nerves and my disease progression, I just couldn’t eat much at all. Back to the room we went. I was given instructions to shower the night before and day of surgery with a special antiseptic soap. So, I did that, and we settled in for a long night of waiting.

The morning came quickly with the night dragging on for ever. (Explain that one!) But arrive, it did. Another shower and dressed, and we were out the door and on the way to Cleveland. Gordon would meet Lou there that morning so that he could return the rental car. I got all checked in and then was instructed to go to the surgical suite. Signed in there and sat in the waiting room until I was called back to get prepped. I was terrified and excited all at once. I was anxious to finally start feeling human again!

Prep took about 1/2 hour or so, and then Lou was allowed to come back and wait with me. We were there for about 15-20 minutes before the entire OR crew came in for their “huddle”. This is where they get together with the patient and confirm demographics, patient and procedure. This is also where the attending surgeon can either confirm the procedure and route of going or sometimes, even do some minor changes in technique. All confirmed, and it was time for me to be wheeled into the surgical suite.

I remember, it was so very cold in the room. I spoke briefly with one of the surgical interns (he was going to be assisting in the surgery) and I remember asking him to take pictures. Unfortunately, that didn’t happen, darn it! But that is about the last thing I remember until I was waking up in the ICU.

Oh my, was I in pain! And not my chest, but my back! It was in horrible spasms! I was extubated and I remember trying to roll over onto my side. All of this is fuzzy, but I do know they finally allowed me to get off the bed and into the chair that was in the room. This is where I stayed for the next day and a half.

Blood, blood, blood. It seemed as if they were drawing blood every 5 minutes. Luckily, they were able to get it out of the arterial line that was still in my neck. I remember the room was so bright. Lights on all over the place. And it was so very loud. Lots and lots going on all the time. I know that they kept me in the ICU a little bit longer than normal, because they couldn’t control my blood pressure. I wasn’t sleeping (how can anyone with all the lights and noise!). But I do remember one time my second night there, where I was finally able to catnap.

One of the side affects of one of the drugs I take, is night terrors. Lou calls them my screaming mimi’s. I don’t get them frequently, but I do get them. So, I remember during my catnap, I started screaming. The nurses came running in and woke me and decided I had had a bit too much pain medication (the button was in my lap), even though I hadn’t pushed the button in hours. So, that was taken away from me. And I heard them laughing and saying I was gorked out of my mind as they were walking away from me. I then remember I started crying. I was overwhelmed and discouraged. I just wanted to get out of there and get home.

Finally, the next day, I was able to be moved into the step down unit. Yeah for me! My blood pressure was doing much better, my heart rate and rhythm was looking good and I was able to keep down a couple of peaches.

It was nice being in a regular room. Of course it was busy during the transition, but finally…peace and quiet. I was finally able to actually try and get some rest. I didn’t have to worry about trying to get up (I still had the foley catheter in) and I couldn’t anyway. At least not without help. They had the bed alarm on. I didn’t realize it, and of course, I tried to get up on my own! Oops!

Life kinda started settling down a bit. As much as it can settle while in a hospital, anyway. I had a great team of nurses, and I absolutely loved the Surgical Nurse Practitioner that took over my care while on the floor…..Agie Stimjanin. He was great! Very attentive and welcoming. It made being there so much better.

The next day, I was able to get the foley removed and the alarm was taken off the bed. I was FREE! Well, as free as I could be in the hospital LOL. I was able to get up and walk around. And it was hard! But, I did it. I was walking laps by that evening. I would never win races, but hey….gotta start somewhere. Also, during this time, the respiratory tech came in and taught me how to use the spirometer. I was instructed to do this as much as I could during the day. The goal was to keep my lungs open and functioning to help prevent pneumonia.

The morning of the 4th day, Agie came in and asked me if I was ready to go home. I got up and started packing my stuff away. He laughed. “I take that as a yes!” Agie said to give them a couple of hours, but he would go out and start writing up my discharge orders. WOOHOO! Even more freedom! We weren’t going to go far, as we were not scheduled to fly out until Sunday (this was Friday). We already had a room booked just a couple of miles from the clinic.

I was grateful for everyone there at the clinic, but even more grateful that I was one step closer to being able to go home.

But, as goes for my life, things are never as simple as they seem……..

Cleveland Bound

The day finally arrived for us to leave for Cleveland. To say I was scared, would be a gross understatement! I was terrified! Someone was going to cut into my chest, crack my breastbone and remove a portion of my heart! It wasn’t where I was getting this done, but THAT I was getting it done. Cleveland has an awesome reputation! And the surgeon I would have, is top notch in what he does. Dr Afshar did his fellowship at Cleveland and knew the major players. So this did make both of us feel a bit better.

Lou also had one of his longtime customers living in Cleveland. So, he contacted Gordon to let him know of our plans.

We arrived in Cleveland and was met at the airport by the limo driver. One of the nice things Cleveland does for their myectomy patients, is provide a limo service from the airport to the hotel and then back to the airport when we were ready to leave. We arrived late at night….about 11pm, if memory serves (which has been hit or miss lately!), but our driver was there waiting with a sign with our name. We got loaded into the car and took off. I was so tired by this time! It was about a 20-25 min drive to the hotel. We had booked a room on campus so it would be easier to figure out where we were going in the morning…..my first appointment was at 0730 for bloodwork.

We got to the hotel around 1am, and the driver went in to get us checked in. He came back out to let us know that there had been a mistake and that there were no rooms for us available, and that we were going to be put up for the night in the other campus hotel. So, we drove over there, finally got checked in and I basically crashed. I did remember to set my alarm though! Ughhhhh, 6am came wayyyyy to early! I was exhausted and our day hadn’t even really started yet!

I hopped in the shower, and got cleaned up and dressed, while Lou got our suitcases all packed and ready to go. Although, we had no idea where we were going to be able to leave them, since we were checking out of this hotel. Got downstairs, got the checkout process done, and the front desk staff offered to let us keep our suitcases in their locked room across from the desk. Great! One less thing we were going to have to figure out!

We walked through the skywalk over to the main campus and tried to orient ourselves to where everything was. My schedule that day was very tight. First place we had to find, was the lab…where I would also get a chest xray and ekg. There were people there in red jackets that we found so very helpful! They were able to direct us to all the places we would need for the morning. Luckily, they were all within feet of each other. Bloodwork, ekg and chest xray complete! Now on the get the echo. Got signed in for that, and was able to catch a breather for a few minutes.

After the echo, I would meet with my HCM doc. And then from there, I would meet with the surgeon’s nurse and then finally the surgeon.

I have just got to say, Dr Thamilarasan is a wonderful doctor! He was the one that I was scheduled with to be my hcm doc. I love him! Very soft spoken and so very kind. He took the time to answer all our questions and address our concerns. He also went over the echo results with us…which weren’t very good. But Cleveland Clinic is rated #1 in the world for a reason….they are great at what they do!

We got a break for a while before I was to meet with the nurse. So, we headed to find something to eat, as neither of us had eaten much in the last 2 days. Finally, the time had come to head upstairs and meet with the surgical staff. Gulp!

We met with Dr Smedira’s nurse first. We went over history and medications and kind of paused when I mentioned I was taking turmeric for my arthritis pain. She asked when my last dose had been….I told her that morning. She asked if anyone had told me to stop it….No. Why would I stop it, its the only thing helping with my pain. She said she was pretty sure that it increased bleeding time, and that it should have been stopped about a week ago. She said she would have to get it cleared by the surgeon. I know my jaw dropped. This we were NOT expecting!

Dr Smedira came in a few minutes later and asked me about the turmeric. Then he said something that stopped me cold and I admit, I lost it! He said that I would have to come back in 2 weeks and then they could do the surgery. I told him that if I left, I wasn’t coming back! Nobody had told me anything about stopping drugs! He asked to see the packet that was sent to me. I brought it out and showed him. He looked all through it and said, kind of under his breath, “you would have to be a PhD to understand a lot of this!”. Once he finished looking, he asked if I had received a do and don’t list of medications. I told him what was in that packet is what I had received. It wasn’t in there. He was not happy….and neither was I. I had finally psyched myself up to get this surgery done, and now I am being told I couldn’t….because of some clerical error. Meanwhile, Lou was doing his thing and trying to find a work around. He asked Dr Smedira the bare minimum we would need before he would feel comfortable to do surgery on me….a minimum of 5 days. So Lou got a hold of his brother in Cincinnati and his friend Gordon. Gordon was able to find us a room on the outskirts of Cleveland that offered clinic discounts, and find us a place to rent a car. So, I guess we were going to be able to play tourist for a couple of days. Gordon came and picked us up at the hotel and took us to the other one he had found. Then he took us to pick up the car and we all went out to dinner. Gordon had his wife meet us. What a way to begin this journey!

We spent the next several days doing some sightseeing….which was nice. We were able to go to a park that was right by Lake Erie, took a small train ride and got to see some of the countryside, and we got to visit the Amish country. All in all a nice reprieve. But, all good things come to an end….and the day for my rescheduled surgery was upon us.

PRE-SURGERY

I had run out of all options. Surgery was the only thing left for me. Dr Afshar and I met to discuss what we needed to do to go forward. I spoke with Lisa at the HCMA. As of right this moment, I was considered a straight forward myectomy case. Myectomy translates literally into removal of heart muscle. I had to make a decision on where and when I wanted to get the surgery. Myectomy is typically not considered an emergent type of surgery, like you would for stents or bypass. So, I had some time to weigh all the options. Everyone felt I would do just fine at IMC, but I had some reservations. I discussed these with Dr Afshar.

First off, myectomies done at high volume centers (meaning they do a lot of them every year) have much better outcomes. Take too little muscle, and you either get no changes or very little changes in improvement. Or, you might become obstructed again. Take too much, and you destroy the heart.

Next, I would be placed in the care of nurses that, quite honestly, did not understand HCM. Remember, I had to do a lot of educating while I was hospitalized just weeks earlier. And I wasn’t too confident in the care I would be receiving.

On the flip side, it was close to home, and I trusted my HCM team. Big decisions to be made. Dr Afshar and I met to discuss and weigh pros and cons. I voiced my reservations, and he totally understood them. Then I looked him in the eye and asked him which he would choose. He said, if it was his sister, he would want her to go to the best facility she could. Cleveland Clinic.

It was decided. Cleveland Clinic was in network for my insurance, and the paperwork was started. I got a phone call a couple of days later to go over my health history. A week later, I was scheduled. I wanted to be able to do as much of the pretesting locally as possible, to help cut the costs of hotels and such while in Cleveland. Cleveland would only allow me to do a right heart cath. All other testing would be done at Cleveland in the 2 days prior to the scheduled surgery. I had 2 months in which to mentally and physically prepare for this invasion. But, I was so looking forward to feeling better!

I got my right heart cath scheduled, and showed up at the appropriate time and place. Light sedation and the doctor was ready to go. About 40 minutes later, I was being wheeled into recovery. They went through my wrist, so I had this funky pressure contraption that had to stay on for about 2 hours to make sure I didn’t bleed all over the place. All I can say, is thank goodness for iphones and ipads! At least I had something to do!

The doctor came in about an hour or so later and started talking to me. I couldn’t quite get what she was saying, so I stopped her. She looked at me and asked if anyone else had spoken to me yet. No, just the nurse that came in periodically to release the pressure on my wrist. She said, you are being admitted. WHATTTTTT?!?!? No, I’m not! Why would I need to be admitted?? She said, there is something else going on and we can’t figure it out yet. We need to do some more testing and contact Cleveland. You no longer have a gradient.

I was flabbergasted. How could I not have a gradient when just a couple of weeks earlier, I was measuring at 70 at rest and 99 provocable. It made no sense. I said, no, I am not being admitted, I’m going home. I need to meet with Dr Afshar and figure out what is going on.

I was finally released, and a followup was scheduled. Later that afternoon, I got a call from Dr Afshar’s partner. She asked if I had ever had problems with oxygenation before. No, not ever. She told me that my sats had fallen drastically during the procedure and that I would need to go on oxygen at night. Can this get any worse?!

So, oxygen was my new friend at bedtime. I met with Dr Afshar, and he told me he was glad I was going to Cleveland. My case had become too complex for them to be able to handle. He had been in touch with Cleveland, and they wanted a specialized echo to confirm their suspicions about what was happening. So, we scheduled an echo for a couple of days later.

The echo confirmed. My mitral valve had pretty much blown up. Which meant repair or replacement. Oh gosh! I had no desire to get a replacement and be on coumadin the rest of my life!!! I was living a nightmare.

I still had not told too many about my condition. I’m a pretty private person. Besides, this was my problem, not anyone else’s . But, I had people start coming up to me asking what was wrong. I kept being told I either looked pale or gray. It was getting to the point, I was scared to drive. I would fall asleep driving. I could not keep my eyes open. Work was hard, too. Again, I had a very difficult time staying awake. So, we modified my work load. I wouldn’t draw, but I would check people in and put their orders into the computer. Ok, fine. I spoke to Lou about my fear of driving. So, for the last couple of weeks leading up to surgery, Lou drove me to work and picked me up at night after work. I typically slept while he drove. I was also falling asleep at the table while working on ebay. This was not a fun time for me.

Because we had no money, it was decided I would fly to Cleveland to get the surgery and then fly back home. Lou would stay to take care of the horses and ebay. Until all this started happening. As I was slowly getting worse, Lou decided he needed to be there with me. So, I called my travel agent to see if she could work a miracle for me. And sure enough, she was able to not only get us another flight out, but Lou was on the same flights as me!

The day had arrived. We were leaving for Cleveland. And, hopefully, I would get my life back!

The Next Two Years

I could not believe the difference in concern and care with my new group! After 2 years of not being heard, I was in tears. Someone was not only listening to me, but actually asking me to take part in my care! Blame was shifting away from me and onto this disease. I was learning more and more about what living with HCM meant for me, my life, and my family. I tried talking to my family and explaining that this was a genetic disease. I even got gene tested…although that came up as inconclusive. Remember, only about 50% of the genes have been identified. So, even though I had a wonderful group of medical providers, I was still hitting a roadblock with my family. Frustrating is an accurate word!

Onward and upward! My whole care plan was adjusted. More testing was done. I found out I was obstructed….which was what was causing the majority of my symptoms. Surgery was discussed, but dismissed (by me!). I was terrified of the thought of having to go through open heart surgery! I started doing more research and I stumbled upon the HCMA Facebook group. What a godsend they were! I admit, I was a lurker for several months before finally posting my first post introducing myself. So many were encouraging and trying to put my fears at ease about surgery.

But, me being me…..I wanted to put it off as long as possible. My doctor, Kia Afshar, told me about a trial they were participating in with a drug called perhexiline. He thought I might be a good candidate. The drug company was trying to determine if this drug could have an impact on exercise capability and tolerance in the obstructed group of HCM. And, as my exercise tolerance had decreased dramatically, I was all for trying. So, I went through the consenting and screening process.

One of the tests that I had to do was called a VO2 Max. I had never heard of it, but apparently its pretty popular with athletes. It measures how well your body utilizes the oxygen it takes in, and how well you recover after exercising. What a fun test! (NOT!) I would tease each time, I felt like a pilot in a fighter jet plane. You wore a contraption similar to their helmets. For this test, I could choose to do treadmill or stationary bike. As a group, we decided the bike would probably be my safest route. Not only did I have to wear this funky mask, but I also had to be hooked up to the monitor. No chance for modesty during any of these tests!

On goes the nose clamp, then a hollow “bite” tube for breathing. Then a pulse ox attached to my brow. All of this held in place by straps that go around my head in various spots. On to the bike I climb.

To do this test, that exertion intensifies at measured intervals. So, every 2 minutes the resistance would increase. I had to keep my “speed” between a certain parameter, I could not close my eyes, and I had to hold on to the bars. My blood pressure would be taken every minute. They wanted me to “go” as long as I could and gave me a number (7 minutes) to shoot for. Nope, didn’t make it! I think I lasted 4 or 5 minutes. I had to wait an hour after this test to do what was called the walk test. How far I could walk in a premeasured distance in 6 minutes. After all of this, I finally got to meet with my doctor.

I was excited and nervous at the same time. Hopefully I would pass the screening process and be put on the study…..and since it was a phase 2, I would be getting study drug! Hopeful was my name!

Dr Afshar came into the conference room and went over the results thus far. EKG, blood work, echo all fit well within the protocol guidelines. Then he started talking about the VO2. He threw out some numbers and then mentioned a word that literally stopped my world. I heard nothing after that.

TRANSPLANT!

Are we talking about me?!?! Transplant? What?

For this particular study, I had to repeat all these tests within 2 weeks and fall within a certain guideline to be enrolled. I decided to use these next couple of weeks to find out more information on what the VO2 results meant. What I found out devastated me. My first VO2 result was 11. Someone for my age and sex, to receive a poor number, was roughly between 27-30 (depends on the chart you look at). Below 12 they start talking transplant.

On to round 2 of testing! Again, after echo, ekg and VO2, I met with Dr Afshar. My VO2 number came back at 9 this time! I could just cry!!! We were thinking that I might be too sick to be enrolled, but all the numbers and tests were sent into the drug company to analyze. I remember, I was really down on myself during this time. Nobody I could really talk to that could truly understand, except the HCM group. I’m sure they were getting sick of my boohooing. But, I honestly had nobody else I could turn to.

I finally heard back from the study coordinators. I was accepted into the study!! I scheduled my first visit, and looked forward to trying a new drug. I so did not want surgery! In the meantime, I met with the EP (the original doctor I had scheduled with) and the genetic counselor. It was decided because of my family history, multiple episodes of NSVT (non sustained V-Tach) and multifocal PVCs, that an ICD would be very appropriate. So, we got that scheduled and I started taking study drug.

Let me digress for just a moment and do some explaining of terminology.

EP – Electrophyisologist (the heart electrician, if you will)

NSVT – Non Sustained Ventricular Tachycardia (a fast heart rate – greater than 100 – that originates in the ventricles) This can be life threatening

PVC – Premature Ventricular Contraction In and of itself, this is a pretty benign arrythymia…we all get them. Kinda feels like a hiccup of the heart. In my case, I have PVCs that originate in different parts of my heart, and a lot of them. Again, all in all, not horrible, but could be a sign of an unstable heart.

For the next 4 months, I took my study drug, in addition to my other drugs, and had my ICD implanted. I was feeling pretty good! I found out that my coordinators had enrolled another fellow hcm’er into the study and he was doing well, too. End of the study came, and time to do the exit testing. I was kind of excited to see how well my numbers increased, since I did feel so much better!

Come to find out, it was a short lived euphoria. My number did go up from 9…..up to 10. I was devastated. The week after my exit testing, the drug company actually pulled the study. They were not getting the numbers they had hoped for. I finished the study, but the other guy in my group did not. But we both agreed we should go to Europe and get some of the drug! (Perhexiline is available in Europe and in Australia).

My next followup appointment with my doctor, we discussed in detail the need to myectomy. But, there was one more option to try. Its a drug called Norpace that has had some positive results for some of those with obstruction. He was willing to give it a shot, but I would have to do an inpatient loading of the drug to make sure I didn’t develop long Q-T. We scheduled a time for me to come in….after work on Friday, and to be discharged on Sunday evening….and a weekend Dr Afshar was on the floor.

Into the hospital I went. Unfortunately, the nursing staff did not know how to “manage” me. I was not their typical heart failure patient, and the doctor allowed me to go anywhere I wanted within the hospital. I just needed to be there to get my drugs, and to do my ekg’s. I even had to educate a couple of the nurses about this disease, as they had never even heard of it! I stayed my weekend, no long Q-T and got discharged. I gave it the old college try, but 7 weeks later, and I noticed no difference in how I felt. The end had come. No more options, except SURGERY!