Month Two

Yesterday marked two months with my remarkable new heart. It has been a time of trial and error; tests, tests and more test; a time for new goals and achievements. This has also been a time of a lot of ups and downs. Thankfully, mostly ups.

I was able to begin a formal outpatient rehab program! That was exciting for me, as anytime I exerted with my old heart, I would go into even more arrhythmias than normal. So being able to be monitored while exerting helps reset my mindset. It has been so very nice watching the monitor and just seeing sinus tach and not tons of multifocal pvc’s! Today at the red center here in the hotel, I was able to go 42 minutes and peddled 7.4 miles. Doesn’t sound like much, does it. But considering 2 months ago, I had a hard time walking to the mailbox without stopping several times, it’s a huge improvement. I go go outpatient rehab m-w-f and still go to inpatient on Tuesday and Thursday. It forces me to get out every day. I am now walking to and from the hospital before and after my appointments. Again, it’s not a huge distance, but it is more than I would have been able to do before. THANK YOU DONOR!

I also had my fifth and sixth biopsies. So far, all my results have been 1r. So low grade infection that will continued to be monitored, but no changes in my medication routine. I have had weekly blood work. Unfortunately, we have had to do some constant adjustments with my tacrolimus, as my levels continue to jump all over the place. I’ve been told that this is very normal as my body adjusts to my new heart and my body settles in with the new drugs. Because of the high dose of prednisone and tacrolimus, I do have the shakes. It especially rears it’s head when I use fine motor skills. Trying to drink from a glass or write anything with a pen has been challenging, to say the least. I’ve been told, it will improve as I start decreasing the prednisone. And hopefully, that will happen next month when I come in for my next biopsy. I can just see myself standing in front of a patient to draw them, and my hand shaking holding the needle!

During this past month, I also met with a few new team members. I added a sleep disorder doc and a pulmonologist to my ever growing list of specialists. I pushed for both, as I’m still having problems with my lungs and my sats dropping,especially at night and when I am under exertion. I will be doing another sleep study this coming week (so not looking forward to that!). So will see what those results will show. Did I get rid of the central sleep apnea as my heart failure doc was hoping? Luckily, the testing will be done here at the hotel I am staying at, but up one more floor. So at least I won’t have to travel far, nor figure out how to get there! Sleep continues to elude me….whether from drugs or breathing issues, I guess we’ll find out next week.

I also met with the pulmonologist last week. He ordered some breathing test to measure my lung capacity. Good news is, I’m not making things up! Bad news is, I have a paralyzed left diaphragm. It has actually caused my breathing tests to be about 40% less than they were 18 months ago when I was testing to get listed. Also, when I lay flat, my numbers are greater than 25% less than when I am sitting. Not good for either. I know for any open heart procedure, they must cut the phrenic nerve (the nerve that works the diaphragm), and this is my second open heart surgery. So I asked if this could be the issue. He said more than likely. However, I was having issues with my sats dropping starting about 6 weeks before I got my call. Since I never had the appointment with a pulmonologist before transplant, we don’t know the reason. It could have just simply been that my heart was failing faster than we thought and with my blood pressure being so low, I just wasn’t being perfused appropriately. We may never know. He did have me meet with a respiratory therapist to give me a new little toy to play with. This one is called an inspiratory muscle trainer. It is supposed to help strengthen the surrounding muscles to help with breathing. Kind of assisting the diaphragm in its job, as it hopefully begins to recover. I asked if this was a common occurrence after open heart. He says for him it is, but this is what he does, so he sees a lot of it. But, in the overall scheme of things with all the surgeries done, it’s relatively rare. Lucky me! He did say to continue with rehab, as movement will definitely help.

So, as of right now, I am scheduled to go home next weekend..lord willing and the creek don’t rise! But of course, long term weather shows that there is supposed to be a huge winter storm hitting pretty much our whole route home!

Lou has been working hard on getting the house as germ free ready as possible. He will be working with a plumber next week to get a UV water filtration system installed, as we are on well water and cannot guarantee how safe the well water is. Even taking a shower could be hazardous for me at this juncture. He converted our covered back porch into a temporary storage area, later to be our eBay room. And yesterday, we got a new washer delivered. Our old one was about 15 years old, and had some mold around the gasket. Lots of changes and lots to learn!

Thank you to donors and their families everywhere! Especially thankful for my donor and their family as they go through this year of firsts.

Month One

One month, 4 weeks, 28 days.

Doesn’t seem like much, does it. But this has been a very special month for me.

November 25 started out as any normal day for me. I got up, went to work, headed home and began to prep for Thanksgiving the next day. I got my turkey breast out of its brine bath, made the cranberry sauce and then made some homemade eggnog. It was just going to be a quiet day, just the two of us.

However, the universe had other plans.

I finally finished cleaning up and headed back to the bedroom to get ready for bed. About 930 my phone rang. It was from a 216 area code….Cleveland, so I answered the phone. It was Jocelyn from the pretransplant team. I didn’t think much of it, because I had put a call into them the day before. We began talking. Jocelyn asked how I was doing, then started asking me all kinds of covid type questions. Again, didn’t think much of it, as everyone was asking these type of questions anymore.

Then…….

“You are probably wondering why I am asking all these questions.” Yeah, kinda. I told her I had called the day before with some questions and I just assumed that was why she was calling. Then the bomb dropped….

Jocelyn said, “I am calling to let you know, we have found a heart for you. I need to find out if you would like it. Dr Smedira has looked over the donor heart, and it is a perfect fit for you. Are you interested?”

I’m sure if anyone would have done a video of me at that moment, I would have looked like a fish out of water. I had been waiting so long, and didn’t think I would ever get this call. I was in shock. I finally croaked out, “yes, yes I want it!” Jocelyn told me to keep my phone line open, as she would start putting my flight plan in place. Once she got it all in together, she would call me with the time to be at the airport. She then said, “I know it’s hard, but try to get some rest. This will be a long night for you.” We hung up, and I ran out of the room to find Lou.

Lou was out on the side porch talking with Louis. I frantically gestured to him to come in. He finally saw me and poked his head in the door. He saw my face and asked what was wrong. I told him “ Cleveland just called, they have a heart for me!” He told Louis he would need to call him back.

So much going through both of our minds! I thought I was prepared for this call. I quickly found out otherwise. I quickly told Lou what Jocelyn had told me. We both thought it serendipitous that Dr Smedira was the one to approve this heart for me, as he was my surgeon for my myectomy. There was so much to do and very little time to do it in.

Both of us got on the phone to get things in place. Luckily, we were able to get a hold of Susan. She told us to not worry about the animals, her and her family had it covered. I called my mother, Lou called Louis back, as we began the process of preparing to leave. My mind was still scrambled. I could not wrap my head around the fact that I would be getting a new heart. At the same time, I was saddened that another family was going to be going through this holiday season without their loved one. It would be a start of firsts for them.

Lou and I finally got calls, texts and messages done for now. I still hadn’t heard back from Jocelyn, and it was coming on midnight. We both decided to try to lay down for a bit, as we knew the next several days were going to be busy and without much rest. Of course, intentions were good, but neither one of us could settle our minds enough to really rest.

I finally got a phone call from Jocelyn about 1am. Unfortunately, it wasn’t with flight information. She called to let me know that nobody had been able to get ahold of Suffolk airport. Now mind you, I had spoken to them 15 months earlier, and was assured they were there 24/7/365. This was also confirmed by Cleveland clinic transplant team. After numerous attempts and messages and no response, Jocelyn was trying to find another airport. We finally decided on Franklin airport. It was about 20 miles away, but still well within reason for travel. I got a phone call back about 15 minutes later. All was set for Franklin for a 4am landing and pickup. Jocelyn texted me all the pertinent info and Lou and I began the final preparations to leave.

We got on the road, and headed into Franklin. As we got closer, we noticed how dark everything was. Since neither of us had been to this particular airport, we weren’t sure exactly where we were going. I put a quick call into Trev, the guy that was opening the airport for us. He told us where to go and where we could park our car. We both got into the lounge and gave our heartfelt thanks to Trev. He had the radio on, so we could hear the jet as they were approaching the airport. We went outside to watch as the circled and landed.

My flight

The pilot got out and took our suitcases. Trev offered to fuel them up, which they declined. As we were getting on the jet, the pilot asked Trev how much for the airport fee. Trev refused to take any money from them. He wished us well, and we were off. I tell ya, I could really get used to private jet flying! We made it to Cleveland in about 55 minutes. We went up to about 48,000 feet and traveling about 550mph!

We arrived at the small Cleveland airport about 15 minutes for the hospital. A security officer was there waiting for us. He got us to the hospital and we headed up to the 5th floor to get checked in. Lou was able to go in with me for a while. But we both knew, once I got my covid test, he would have to leave, and we wouldn’t be able to see each other again. I got into my room, the nurse came in and got me hooked up to the monitor. So much happened in that first hour….plus I got there just before shift change. So very busy up front. Lou was able to spend a couple of hours with me, then he had to leave. The nurse came back in to do my covid test. From that moment on, I was considered to be in a covid cold unit.

Luckily, we were still able to talk on the phone. During all this, we were trying to get Lou set up in the hotel. It was difficult, since it was thanksgiving day, and the person we needed to speak with wasn’t available. We reached out to the pretransplant team for assistance. They reached out to the nurse case manager and the social worker. Finally Lou had a room secured. I still hadn’t heard when I was supposed to be taken into the OR, but that all was still a go. This whole time, I kept having to silence my monitor. As I was pretty much in bigeminy all the time, my monitors alarms kept going off every 4 minutes. I thought it was pretty hilarious. I had been dealing with this for so long, I was used to it. But it was nice having concrete verification!

While in holding in preop.

I had doctors and nurses coming in and out all the time. Blood work, and more blood work. IVs placed, questions asked and answered. Lungs and heart listened to. Then an anesthesiology fellow came in to place an art line.

My covid test came back negative, now all we needed was an OR time. We had been hearing through the grapevine, I would be going into surgery at 11pm. But nobody had been able to verify yet. Finally around 10pm, we got confirmation. And it got busy once more. At 1045pm, the OR team came to get me. I was wheeled into the OR, started getting prepped, and before I was fully placed under anesthesia, I asked once more to have someone get a picture of my native heart.

Then I was gone……

Another visit, another surgery

Well, the next several weeks flew by, and it was soon time for another trip to Cleveland.

In the meantime, I had been able to find and secure us a place to live. Lou was still making his treks across the country getting our stuff out of Utah and preparing to move into our new house. The owner allowed me to take early possession so that I could begin to get it ready to receive the horses. I had found fencing and other supplies, and Louis was kind enough to come out and help me, not only pick up supplies, but to put the fence up. I was excited. The horses were going to have some grass….almost 5 acres….to munch down. And, we were not going to have to worry about snow and freezing weather, as we were already into May.

Again, Lou and I arranged our schedule for me to fly in and him to be in Cincinnati. He would pick me up at the Cleveland airport and we would make our way to the hotel. My procedure was scheduled for the next day, early. I had been off my coumadin for the last 4 days in anticipation of this procedure. It had been a very long day for both of us, and it was promising to be a long day tomorrow. I knew I would have an overnight stay, so Lou would be able to stay in the room with me.

Well, the day dawned, as it is wont to do. We had arranged for an early morning ride into the clinic via the shuttle, and our truck would just stay in the hotel parking lot for the time being. Once I got released, we would come back, stay the night and head out the following morning. The shuttle driver dropped us off at the entrance, and we proceeded to get checked in. Once checked in, we made our way up to the cath lab area and sat in the waiting room.

A few minutes later, my name was called…but I was only taken into a little closet type room to check my INR. It had come done nicely, so I was set to go. I went back into the waiting room to wait until I would go back into the prep area. About a half an hour later….I was paged. I went back by myself to get ready. I got an IV placed, hooked up to the monitor, vitals taken and then another wait. Pretty soon, an EP fellow came to consent me to the procedure. In the meantime, Lou had been paged and he was allowed to come back until I was taken into the cath lab. Dr Bhargava and his surgical team made it into my cubicle where they verified who I was and the procedure I was there for. Then off to the cath lab.

One thing I can tell you, walking into the cath lab is like waking off a plane onto Antartica. It is FREEZING in there! So, of course I asked for nice, warm blankies! Then I was mostly out. I remember bits and pieces of what went on, but most of it is a blur. The next thing I remember for sure, is I was in recovery and screaming because my back was spasming so badly. I found out later, I had been lying flat on that hard table to about 8 hours…so even longer than the time I was cut open for my myectomy.

Dr Bhargava had told Lou it would probably take about 4-5 hours, and then when it was done, Lou say him walking out into the waiting room and pulled him into another little room. Lou thought the worse. Dr Bhargava explained that, even though my arteries were clear, the artery he wanted to place the left wire had a sharp angle that made it very difficult to place it correctly. As it was, he was only able to get it about 50% of what he wanted to do. But it was in.

I was eventually taken to my room and rest. They have the best nurses at Cleveland! Everyone is so helpful. I asked for their most amazing water filled heating pad machine. It helps my back so much, especially being on those awful hospital mattresses. I was finally able to get settled down. The nurses had brought in pillows, sheets and blankets for Lou to sleep as well. It had been a very long day.

The next day, Dr Bhargava came in and went over what had happened. He wanted me to follow up with another interrogation in a month. But, I could do that locally. Other than that, I was free to go, and to follow up with him when I came back in about 3 months to see Dr Thamalarasan and Dr Tang.

We were released. The calm before the storm.

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……..