Year One

Wow! Has it already been a year? So very hard to believe. So very much has happened this past year. It’s hard to even know where to start. But, here it goes.

The weekend we were planning on leaving Cleveland, true to form, we had a pretty good snow storm. It wasn’t so much in Cleveland itself, but the whole route coming and going. So, Lou and I decided to play it safe and wait for the middle of the week to attempt this extraction. The weather was calling for sunny days, although a bit cold. But at least the snow on the roads would have a chance to melt making traveling that much safer.

Lou arrived without incident, and we got ready to leave the next morning. We wanted to wait to leave a little bit later in the morning….allowing the sun to come up and continue its melting. We went downstairs for breakfast, and I was able to say goodbye to the staff I had gotten to know over the last month and a half. We got the car loaded, well Lou did, and we were off. I was in awe of the surroundings. The last time I had driven this route, everything was still green and growing! Now, it was covered in snow. I was expecting it, but it was no less shocking to see. The best part? I got to drive!! I know, I know….big deal. It was to me. I wasn’t allowed to even be able to sit in the front seat for the first 6 weeks, to allow my sternum to heal somewhat. And this was beyond the 6 week time constraint, so I drove!

We finally made it home that night. I was ready to crash. We got the important stuff out of the car and would deal with the rest in the morning after we both got some sleep. We got up the next morning and began the day. I still had to do a lot of resting, still trying to build up stamina and energy levels. But, I’ve been told, and found it’s true….this is a marathon not a sprint.

I had calls to make, and appointments to schedule. I needed to get set up with local cardiac rehab. I didn’t want to loose the momentum I had built up with Cleveland. I also needed to schedule an appointment with my GP. So very much to do. And we were going to be headed back to Cleveland in a week and a half for another biopsy.

I finally got a hold of someone at a local cardiac rehab facility and scheduled an appointment for my intake. This would take place just a couple of days before we would be leaving, so would work out perfectly. I was also able to get in to see my GP before leaving. All moving in the right direction!

Honestly, I was not very impressed with my local cardiac rehab team. I was comparing them to the program at Cleveland, and they were sorely lacking. As I as the “youngster” in the room, they didn’t really pay much attention to me. I wasn’t given set goals, nor was I given any type of agenda. I basically did my own thing. Which, I guess, is ok. I was just disappointed in how apathetic they seemed to be, just because I was “young” and didn’t have a heart attack. Different strokes, I reckon! And all this after waiting almost 2 weeks to get in to my first session!! It had to be approved by “their” cardiologist. Even though Cleveland had sent them extensive notes on what I had been doing with them….both inpatient and outpatient. Oh well, at least I was doing something.

Then I left for Cleveland, got my biopsy and labs done. All looked good. Biopsy report showed 1R, so no new treatment regimen. And once again, homeward bound. The following week I would follow up with my local heart failure doctor. I had been in communication with him. Let him know everything result wise. This would be my first visit with him after transplant.

Talk about crap hitting the fan! I went in to my appointment with Dr Baran. Now, I had been in contact with my pulmonologist and heart failure doctor at Cleveland, as my oxygen sats were once again dropping at night. I was thinking it still had to do with the paralyzed diaphragm. Dr Baran’s post transplant nurse came out to the waiting room and grabbed me. Sat me down in the room and asked lots of questions, updated medical history and drug list. All of this took a good while, as all my medications had changed. Then she took my vitals. Oops, wrong move! I was satting at 88% on room air. She wasn’t happy about that. I told her I had been in contact with both Dr Aboussuan (pulm) and Dr Tang (HF), and that they were still thinking it had to do with my diaphragm and that I was working on the exercises Dr Aboussuan had given me. So, Cleveland was very aware. I also gave her the reports and results from my visit to Cleveland the week before. She turned back to look at me, and said “we’ll see what Dr Baran says when he comes in here.” And she left the room.

A few minutes later, Dr Baran walks in, asks how I’m doing….I tell him, and says I am admitting you. WHAT?!?!?! Ummm, no. I have appointments later today. He says yes you do, with the ER. He brought his nurse back in to the room, and asked her to take me down to the ER and wait there with me until they got me into a room. She was not to leave until that point. (See, Dr Baran knows me way too well! He knew I’d sneak off.)

I was so mad! I didn’t need admitting! I just needed to go home and rest. I remember being admitted into the ER and I remember going into a room having an IV placed and blood drawn. I also remember later that night being taken into the cath lab for an emergency biopsy and right heart cath. I remember Dr Baran coming in to do the procedure and I remember him talking about putting me on ECMO. I quite honestly don’t remember much beyond that. I honestly don’t even know if I was taken to the cath lab from a room, or the ER.

Pretty much the month of March is a big blur to me. I don’t know if what I was seeing and hearing were real, or part of the ICU delirium. What I know came from Lou and a few other people.

I crashed later that night. And I crashed hard! I was placed on ECMO and had a balloon pump inserted. I was in cardiogenic shock, but they could find no definitive answers as to why. I wasn’t in rejection, my right heart cath showed some elevation in pressures, but not horrible. Blood work showed my rejection medication levels were fine, and that I wasn’t in DIC (disseminated intravascular coagulation). Most everything was coming back fine. Still no real answers. So, this all happened on March 2nd. My local team was in constant communication with Cleveland trying to get me stabilized and figured out. By the 4th, one of the local heart failure docs came out to talk with Lou. Basically, he came out to say that they had done everything they could, but they were still loosing me. Cleveland requested for them to get me packaged up and prepare for their team to come get me and transport back to them. Dang it! I missed my second jet ride!! I know it took the locals a while to get me packaged, but finally, the jet was here, I had a team of 5 doctors to transport me, including my transplant surgeon, and off we went.

I know that for the next 2 weeks, I was in an induced coma, still on ECMO and the balloon pump. And I know it was touch and go there for a while. I know Lou had to call my GP and talk to him about switching me to a trach, as they don’t want to leave the endotracheal tube in past 10 days. I know that the nurses would bring me out of the coma to make sure I was still “in there”. Some of this, I have recollection of. But again, I have no idea if real or imagined.

Slowly, very slowly, I started kind of improving. I wasn’t totally out of the woods, but there was a collective sigh of relief. They brought me out of the coma, and left me out. I did still have the trach in, and I still wasn’t doing well, but I was alive. By this time, Lou had gone home. He wasn’t allowed in the ICU, and there was really nothing for him to do except wander the halls and wait to hear word. So, he decided to head back home. Once I was out of the coma, I could facetime with him. I couldn’t talk, but could nod and shake my head. Even that was a chore for me. But, at least we could see each other.

Lou did an awesome job of updating people on his facebook page, and the transplant and hcm pages. He didn’t hold anything back, nor did he sugar coat. He told it like it was. I reckon it scared some people. But there were others that were anxiously awaiting daily updates. I was still in the ICU. I know they had me on heparin, as the ECMO caused blood clots to develop. Problem was, even though I had and was still developing clots, I was bleeding at the same time. Again, nothing really abnormal in my labs. Nobody could figure out what was going on. I remember one time, I threw up a huge blood clot. I was still on IV heparin. And every time I would suction, I was suctioning up fresh blood. Bleeding and clotting at the same time.

Eventually, I was stable enough to get transferred to the transplant floor. I was so shocked at how weak I was. My legs and arms looked like toothpicks. I had lost all of my muscle mass. Just before I got moved, the ICU staff wanted to switch me to a drug called Eliquis and get me off the IV heparin. I was taking oral medications and doing fairly well with it, so we switched. I got up to the 8th floor, and got to see all my nursing friends. I was happy about that!

Then, we got more good news! Cleveland had opened up the transplant floor for one visitor. I called Lou and told him. He made plans to head up for that coming weekend (Easter weekend). We were both very excited. We hadn’t seen each other in over a month. And a scary month it had been!

Lou got up there and I was able to introduce him to some of my favorite nurses. As it was the weekend, it was fairly quiet, so we got to spend a lot of time together. Lou was shocked to see my legs! He couldn’t believe how much they had atrophied in a months time. I had already started working with both occupational and physical therapy, so I was starting to try and get some musculature back. Boy, was it tough!! I was also trying to do some massage therapy on my legs and feet. I had developed some peripheral neuropathy after the transplant that had gotten some better, but this crash and my month long ICU stay made it worse.

That Monday, Lou was getting ready to head home, and he volunteered to rub my legs for me before he took off. Oh, did it ever feel good! On my left leg. Then he got to my right leg. He got to one part and OUCH! that hurt! I felt the area, and noticed a couple of bumps. My nurse walks in about that time with my drugs and I tell her about it. She looks and feels, and she does see the bumps. She noted it in my chart. Said we would keep an eye on it and to let her know if it got any worse. Lou then got ready to leave. It had been nice having him there!

Later that night, the oncoming nurse asked about my pain. It was still there, it still hurt, but hadn’t changed much. The next day, I said something to Emily, the NP covering the floor. She suggested trying some ice. I also asked if I could try some capsaicin to see if that would help. She got that ordered and also ordered an xray. When PT came in a bit later, I noticed my toes were now starting to drag when I walked. And my leg was really starting to hurt more. Xray results came back….no breaks.

Wednesday, and pain only increasing. Nothing was touching it. I now had 4 lumps where it was painful. So, they did another ultrasound to check for more clots. Nothing new on my right leg, but they did discover some new clots in my left leg in addition to what was already there and a couple of other fun features. One was a pseudoaneurysm in my left groin and the other was an AV fistula. Both caused by the ECMO cannulation. Nothing really concerning at this point.

Thursday, Emily came in and said everything was in place for me to be moved to Avon Acute Rehab facility. They weren’t concerned with my leg thinking it just muscle soreness since I had been up and trying to walk. So, that evening, I got to take an ambulance ride to Avon. As I got settled in to my new room, the nurse and I went over some of my medical history. And I told her about my leg pain. She, too, was able to feel and see the 4 bumps on my leg. She checked pedal pulses, all good. Then I got settled in for the evening and night. The next day, I began my rehab.

I honestly wasn’t able to do much between the pain and also not knowing why I had the pain. Plus, my toes were really dragging by this point. The doctor that had come in that morning was not the caring type….guess a good way to put it. He came in and slapped on my lower right leg. I flew out of bed! Oh, it hurt so bad! But again, nothing extra was done. So, I spent my Friday doing a little bit of rehab, but pretty much staying in my room.

Saturday, and the oncall doc came in to do her rounds. We talked about a few things and she asked if there were anything else concerning me. I told her about my leg. She told me she would look at the imaging that had already been done and see if there was something else she could do. A couple of hours later, my nurse came in and told me that I was going over to the Avon Hospital for a CT scan of my lower legs. About 1/2 hour later, the ambulance crew shows up and takes me over there. The CT only took a few minutes, then I was heading back to the rehab facility. By the time I had gotten settled back into bed, I got notification of new test results. I opened it up, and sure enough, me CT results had come back. The more I read, the paler I became. My nurse was still in the room, and I asked her to read and confirm what I was seeing. Yup, I had an active bleed into my right calf. Compartment syndrome! Oh gosh! I knew what that meant! I knew that Avon couldn’t handle this type of complication, so I asked if I was going back to main campus. I was, just didn’t know when.

Neither one of us heard anything more that night. The next day, Saturday, my nurse comes in. And I tell her to look at my foot. My foot has now turned purple. She leaves the room to call the doc (different than the day before) and to find out when I was to be transferred. I pretty much stayed where I was until about 4 that afternoon. By the time I got back to the main campus, it was late and I had no idea what the next steps would be. I was on the phone with Lou when vascular medicine walked in. He asked a few questions, then pulled no punches. He told us both, that had this been taken care of Monday, all would have been fine. As it was now, he wouldn’t know until he got in there whether or not my leg could even be saved. And he said, if they could save my leg, chances are, I would very likely be permanently handicapped. I was flipping out and crying, Lou was asking if he should head up. The doctor said yes, head up now.

I was then taken into the OR for an emergency fasciotomy, not knowing if I would wake up with a leg or a missing lower leg…..

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.

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!

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!

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!

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.