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.

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!