Life Happens

Hello everyone! I would like to sincerely thank everyone for their generosity as I traverse this post-transplant life. So much has happened since the last update! During all of the chaos surrounding my very long hospital stay in 2024, I decided to go back to school and get a degree in social work. I am happy to say I have graduated with my bachelor’s degree and will be participating in the commencement ceremony on May 18, 2025! I am graduating with a 3.98 GPA!!

Also, I was able to connect with my donor’s family and have remained in close contact with his mother. Tammy came up here for Erik’s 33rd birthday and we celebrated it together. It was so nice to be able to say thank you in person! It was one of the hardest calls I had to make when I called to tell her that Erik’s heart was failing, but she understood and said Erik would be proud that he bought me 4 years of life.

But I have jumped ahead of myself….

The last update was about the issues I was having with clotting and bleeding at the same time. Although that is mostly resolved (still don’t know why this was happening!), I will still occasionally get a clot despite being on blood thinners and within the parameters I need to be. This has been extremely frustrating for my care team and me. I am still on blood thinners and probably will be for life. At least I have a home INR machine, so I don’t need to travel to get it tested. Last year, in March, I started feeling pretty bad. My CardioMems numbers kept increasing (my Mems unit wasn’t removed with the transplant…thank goodness!). Despite repeated use of diuretics, I could not get the fluid retention under control. Eventually, I landed in my local ER and was life-flighted to Cleveland (for the second time!). This was the end of April of 2024. We eventually discovered that my heart was failing. I was placed in the ICU (those nurses ROCK!!!) for the next 4 months. I was placed on a balloon pump, which ended up getting infected (oh I was so sick! Everyone thought I was going to die), then had a milrinone drip placed once the found out I could not have another balloon pump installed, I was listed at a status 2 with exception with UNOS, and I was going stir crazy!

Unfortunately, since the team did not know what was happening with my heart, they decided to be extra cautious in accepting a new heart. Even though I am AB+ (and can receive anyone’s heart), it was the antibodies they were watching closely. Finally, I was awoken about 0200 on August 21, 2024. I thought my sats had fallen again, but I was surrounded by the night nurses. My nurse had the pleasure of telling me that they had found a heart for me. Tentatively, surgery was scheduled for sometime around noon that day. I quickly called Lou (woke him up), and told him the news. As he was preparing to leave to head up to Cleveland, I was busy “cleaning” my room. A lot of stuff accumulates when you are someplace for 41/2 months! We knew Lou wouldn’t get up there in time to see me off. I did, however, get to “ring the bell”! (couldn’t upload the video, so you get a blurry screenshot LOL)

Of course, me being me, things did not go smoothly. I know bits and pieces. I know that they had to leave my chest open, then they had to go back in the next day because I developed a pericardial tamponade. They cleaned out clots and blood from around the pericardium (this is the sac that surrounds the heart muscle). Then, I still wasn’t responding very well, and they took me back in for an exploratory surgery. What they discovered was that because of all my surgeries, I had developed adhesions (scar tissue) around my inferior vena cava (IVC). They discovered this by ultrasound…I did not have blood flow between my liver and my heart. So, they had to go in and clean this out. (This is so rare that the docs that discovered it asked permission for and received it to publish a case paper in the Ultrasound Journal. The paper has since been published. The fellow who contacted me said that to their knowledge, this has never happened before.) Then, when I was starting to wake up, I was not responding appropriately, nor was I moving my right side. So, they began their stroke protocol procedure. Even though the CT was negative, even today, I am weaker on my right side than I should be.

Then the final blow happened a couple of weeks ago. Over the last couple of years, I have had increasing visual problems….nobody could figure out what was going on. I went to my neuro-opthalmologist’s appointment, and was told I am now legally blind. I still have central vision, but I have lost peripheral vision. That means I am no longer allowed to drive. There goes my independence! This is still so new, I am still processing what this will mean. I do have appointments set up with the Department of Aging and Rehabilitative Services (DARS) and with the Virginia Department for the Blind and Vision Impaired (DBVI) next week. I am hoping that DARS will be able to help me find a job and that DBVI can assist with this, too. I am still planning on getting my master’s in social work and working with the transplant population. In the meantime, the increased financial burden from the second transplant has put us in a pickle. Lou will be 71 next month, and is on social security. And I have been on social security disability for 4 years. Neither of these incomes meets our monthly outlay. I am hoping against hope, there is a job out there that I can do in the interim that will be willing to work with my erratic medical appointment schedule. Thank you all for reading and following my journey.

Thank you again

Debbie

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.

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.

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.

PRE-SURGERY

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Finally!

I didn’t know what I was going to do, but knew I had to find a new doctor and fairly quickly.

I had heard about a heart fair at a local hospital the first Saturday in February, so about 10 days later. It was a free event, so decided I had better go check it out. During the interim, I began researching cardiologist through my insurances’ website. I would read through the minimal bios, and I found about 5 I wanted to research further. I spoke to the referral nurse at the office I was working, to get her opinion. She hadn’t heard of any of them before. So, to the computer I went once more.

After a little bit more searching, I zeroed in on one doctor. He listed his specialty as an Electrophysiologist (the “electrical” heart doc). Plus, he listed research and genetics as a subspecialty.

Hmmmm, sounding promising! So, I made an appointment. I couldn’t be seen until the end of May, but at least I had an appointment!

The day of the fair dawned cold and clear. I drove to the hospital, about 20 minutes from my house, and was surprised at how full the parking lot was already! It was a packed house!

I finally worked my way to the entrance, and started asking who I should speak with about HCM….

Two hours later (quite literally!), I finally found a nurse that had actually heard of the disease (nobody else had even heard of it before!), and directed me to go to the heart failure clinic at the other end of the hospital and downstairs.

It took me a while to traverse the hallways and the horde of people, but I finally got down to where I needed to be, and found blessed silence. There was me and one Nurse Practitioner down there. She asked if she could help me with anything, and I told her I was directed down here to see if this is where I needed to be. I was able to explain my history and story. She listened and then told me I was in the right spot!!

Victory!!

I told her I had an appointment with an EP in a couple of months. She told me yes, to keep that appointment, and that the doctor I had scheduled with was also part of the HCM team. But, I should really call this number (she handed me a business card with the clinics number circled) on Monday and tell them I needed to schedule an appointment with the HCM clinic.

Talk about relief! I wanted to cry right then and there! You mean, not only have you heard about this disease, but you have a clinic devoted to HCM patients?!

You bet that number was the first call I made Monday morning, and I got an appointment for 2 weeks later. I was excited and nervous at the same time. The next couple of weeks crawled and flew by.

My appointment day finally arrived. I did not know what to expect. I had already arranged with work to go in later that day, after the appointment, so I was dressed in my scrubs. I got down to the sign in desk, and was checked in with little fuss, as all of my medical records had already been sent over.

I was called back to the room by one of the medical assistants and vitals checked. She told me the pharmacist would be in shortly. Pharmacist? Really? And a few minutes later, he walks in. He goes over my complete medication list and asks me questions pertaining to their dosage and usage. About 10 minutes after the pharmacist leaves, in comes a Nurse Practitioner…..Jeff (he would become one of my favorite!).

Jeff spent a very long time with me…at least an hour. We went over my medical history, my family history, my medication, and we spoke about how I was feeling. Did anything cause my symptoms to worsen or to get better? Then he did a very thorough exam. He told me he was going to go out and speak with the doctor and that they would be back in a little bit.

This next part, lasted about 20 minutes. Then Jeff and a doctor walked in. The doctor told me I could call him Rami (as his name was just waaay too long and hard to pronounce!)

We covered a lot of the same ground, just not to the extent that Jeff and I had. Another quick listen and look. And then we sat down to discuss the upcoming plan of action.

What? You mean I actually have a say? How novel!

I left the clinic that morning very excited and happy! Not only did I appreciate the “team” approach, but to actually have medical personnel that understood my disease. Most importantly to me, they LISTENED to what I had to say, and appreciated my input into my care! I didn’t know what the future was going to hold for me at that moment, but I honestly didn’t care….because I had found a group that wanted to help me.

I was to learn a bit later, that I had stumbled on an HCMA approved Center of Excellence for HCM. What a HUGE difference in approach and care!

I made a follow up appointment for 2 weeks later, and so began the next leg of this journey…..