Tag: establishing care

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!