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.

Readmission & Discharge

Oh crap, I was back in the hospital and my heart was NOT behaving itself. No more shocks, but lots and lots of PVC’s and NSVT. Maria was in and out all night making sure I was doing ok. Finally morning came, and around 0600 the on call doc came into my room. I had never met him until this moment. He introduced himself and asked how I was doing. I told him, not so good. He asked me why. And I told him because he hadn’t responded to my nurses many pages and I was upset at his lack of concern and care. He was taken aback. “What do you mean?” I asked him if he had put in orders for medication and if he had put in orders for blood work. He was in the process of asking why I would need any blood work, when Agie came in. Agie said he had heard I had been readmitted and he wanted to come check on me. Agie was still working the 5th floor and I was on the 6th. So, I asked Agie if he could continue being my provider while I was in here. He said, “sure, it would do me good walking up a flight of stairs every day.” I smiled and told the other doc, he was no longer needed. I told Agie, that I did not want the other guy to ever come back into my room. He said he would let the nursing desk know. I then asked Agie to explain the plan. Blood work and ekg’s. He told me that the new medication had a tendency to cause a condition called long qt, so they would need to monitor that closely with multiple ekg’s throughout the day. But, they needed to try and get my heart rhythm back under control and this was the best thing to try. They were also going to put me back on a drug called Coumadin (or warfarin)…..a blood thinner, because this was my second episode of afib. I was beginning to feel better…..not happy, but at least I had some answers and a plan going forward.

The next morning, the first doctor came back into my room. I looked at him, and asked what he was doing in here. He said, checking up on you. I told him to leave the room and not come back, that Agie was now my care provider. He honestly looked surprised and started stumbling over his words. I told him he hadn’t cared enough the day and night before to even answer my nurses’ pages, so he didn’t need to be involved in my care. I again asked him to leave. He looked at Lou and asked him why I would do that and what was wrong. Lou calmly and quietly told him he had better listen to me and leave. Nope, still not leaving. He just kept ignoring me and talking to Lou, until Lou started to get up out of his chair. Lou once again asked him to leave. He finally turned around and left. A couple of minutes later, Maria comes in to introduce me to the day shift nurse. And I asked them both to please put a note in my chart, on my door or anything else about not allowing him to come into my room again. Maria explained to the oncoming nurse what all had transpired the night before. I asked Maria if she was going to be on again tonight and if so, could I have her as my nurse again. She smiled and said she would love to.

The next 4 days passed slowly. I continued to walk the halls to work on building my stamina and I continued to do my breathing exercises. Agie came in one morning and told us about an air show that would be taking place that day and the next. He also told us of a meeting room down the hall that we could use if we wanted to watch it. He said since it was the weekend, nobody would be using it, and it had a great view with the all glass wall. So, Lou and I took a walk down there, and sure enough, we were able to watch some of the show. Of course, we weren’t able to see it all, but we could watch quite a bit of it, even though it was in the distance. All in all, it was a fairly quiet 4 days.

Then came the day of discharge. We were going to be heading straight to the airport this go round. And I was so very nervous. My last exit didn’t go as planned! Agie came in told me the discharge orders were in. He wrote me a letter for the airport security. I got my prescriptions filled and the limo was there to pick us up. I admit, I was scared. All kinds of thoughts kept racing through my mind. What if I went in to rapid afib again and I was 30,000 feet in the air? What happens if my icd starts shocking me again? Ughhhh, so not a good feeling.

We finally got to the airport, and into the line for security. Of course, since I was in a wheelchair and just had surgery, I was pulled out of the line to be patted down. REALLY?!?! Two women took me into a room, I showed them my letter from Agie, and they said they had to continue with the pat down. I asked them to please be careful with my chest as I had just had open heart surgery a few dies prior. Fortunately, they were gentle and soon I was back with Lou. We found our terminal and waited. We did have one layover and plane switch, but Lou went up to the counter and made sure we had help for the transfer.

The plane rides went smoothly. My mom was to meet us at home, and a friend of ours was going to be meeting us at the airport to pick us up. I was not allowed in the front seat for 6 weeks to allow my sternum and ribs to heal. So, we decided on using my car, which would be more comfortable and easier for me to get in and out of. I was finally home. It was late, but mom was there and she had tried to get everything ready for me. I was beat. Now, it was time for the healing to begin and hopefully the start of finally feeling better!