Tag: gift of life

Month Two

Yesterday marked two months with my remarkable new heart. It has been a time of trial and error; tests, tests and more test; a time for new goals and achievements. This has also been a time of a lot of ups and downs. Thankfully, mostly ups.

I was able to begin a formal outpatient rehab program! That was exciting for me, as anytime I exerted with my old heart, I would go into even more arrhythmias than normal. So being able to be monitored while exerting helps reset my mindset. It has been so very nice watching the monitor and just seeing sinus tach and not tons of multifocal pvc’s! Today at the red center here in the hotel, I was able to go 42 minutes and peddled 7.4 miles. Doesn’t sound like much, does it. But considering 2 months ago, I had a hard time walking to the mailbox without stopping several times, it’s a huge improvement. I go go outpatient rehab m-w-f and still go to inpatient on Tuesday and Thursday. It forces me to get out every day. I am now walking to and from the hospital before and after my appointments. Again, it’s not a huge distance, but it is more than I would have been able to do before. THANK YOU DONOR!

I also had my fifth and sixth biopsies. So far, all my results have been 1r. So low grade infection that will continued to be monitored, but no changes in my medication routine. I have had weekly blood work. Unfortunately, we have had to do some constant adjustments with my tacrolimus, as my levels continue to jump all over the place. I’ve been told that this is very normal as my body adjusts to my new heart and my body settles in with the new drugs. Because of the high dose of prednisone and tacrolimus, I do have the shakes. It especially rears it’s head when I use fine motor skills. Trying to drink from a glass or write anything with a pen has been challenging, to say the least. I’ve been told, it will improve as I start decreasing the prednisone. And hopefully, that will happen next month when I come in for my next biopsy. I can just see myself standing in front of a patient to draw them, and my hand shaking holding the needle!

During this past month, I also met with a few new team members. I added a sleep disorder doc and a pulmonologist to my ever growing list of specialists. I pushed for both, as I’m still having problems with my lungs and my sats dropping,especially at night and when I am under exertion. I will be doing another sleep study this coming week (so not looking forward to that!). So will see what those results will show. Did I get rid of the central sleep apnea as my heart failure doc was hoping? Luckily, the testing will be done here at the hotel I am staying at, but up one more floor. So at least I won’t have to travel far, nor figure out how to get there! Sleep continues to elude me….whether from drugs or breathing issues, I guess we’ll find out next week.

I also met with the pulmonologist last week. He ordered some breathing test to measure my lung capacity. Good news is, I’m not making things up! Bad news is, I have a paralyzed left diaphragm. It has actually caused my breathing tests to be about 40% less than they were 18 months ago when I was testing to get listed. Also, when I lay flat, my numbers are greater than 25% less than when I am sitting. Not good for either. I know for any open heart procedure, they must cut the phrenic nerve (the nerve that works the diaphragm), and this is my second open heart surgery. So I asked if this could be the issue. He said more than likely. However, I was having issues with my sats dropping starting about 6 weeks before I got my call. Since I never had the appointment with a pulmonologist before transplant, we don’t know the reason. It could have just simply been that my heart was failing faster than we thought and with my blood pressure being so low, I just wasn’t being perfused appropriately. We may never know. He did have me meet with a respiratory therapist to give me a new little toy to play with. This one is called an inspiratory muscle trainer. It is supposed to help strengthen the surrounding muscles to help with breathing. Kind of assisting the diaphragm in its job, as it hopefully begins to recover. I asked if this was a common occurrence after open heart. He says for him it is, but this is what he does, so he sees a lot of it. But, in the overall scheme of things with all the surgeries done, it’s relatively rare. Lucky me! He did say to continue with rehab, as movement will definitely help.

So, as of right now, I am scheduled to go home next weekend..lord willing and the creek don’t rise! But of course, long term weather shows that there is supposed to be a huge winter storm hitting pretty much our whole route home!

Lou has been working hard on getting the house as germ free ready as possible. He will be working with a plumber next week to get a UV water filtration system installed, as we are on well water and cannot guarantee how safe the well water is. Even taking a shower could be hazardous for me at this juncture. He converted our covered back porch into a temporary storage area, later to be our eBay room. And yesterday, we got a new washer delivered. Our old one was about 15 years old, and had some mold around the gasket. Lots of changes and lots to learn!

Thank you to donors and their families everywhere! Especially thankful for my donor and their family as they go through this year of firsts.

Month One

One month, 4 weeks, 28 days.

Doesn’t seem like much, does it. But this has been a very special month for me.

November 25 started out as any normal day for me. I got up, went to work, headed home and began to prep for Thanksgiving the next day. I got my turkey breast out of its brine bath, made the cranberry sauce and then made some homemade eggnog. It was just going to be a quiet day, just the two of us.

However, the universe had other plans.

I finally finished cleaning up and headed back to the bedroom to get ready for bed. About 930 my phone rang. It was from a 216 area code….Cleveland, so I answered the phone. It was Jocelyn from the pretransplant team. I didn’t think much of it, because I had put a call into them the day before. We began talking. Jocelyn asked how I was doing, then started asking me all kinds of covid type questions. Again, didn’t think much of it, as everyone was asking these type of questions anymore.

Then…….

“You are probably wondering why I am asking all these questions.” Yeah, kinda. I told her I had called the day before with some questions and I just assumed that was why she was calling. Then the bomb dropped….

Jocelyn said, “I am calling to let you know, we have found a heart for you. I need to find out if you would like it. Dr Smedira has looked over the donor heart, and it is a perfect fit for you. Are you interested?”

I’m sure if anyone would have done a video of me at that moment, I would have looked like a fish out of water. I had been waiting so long, and didn’t think I would ever get this call. I was in shock. I finally croaked out, “yes, yes I want it!” Jocelyn told me to keep my phone line open, as she would start putting my flight plan in place. Once she got it all in together, she would call me with the time to be at the airport. She then said, “I know it’s hard, but try to get some rest. This will be a long night for you.” We hung up, and I ran out of the room to find Lou.

Lou was out on the side porch talking with Louis. I frantically gestured to him to come in. He finally saw me and poked his head in the door. He saw my face and asked what was wrong. I told him “ Cleveland just called, they have a heart for me!” He told Louis he would need to call him back.

So much going through both of our minds! I thought I was prepared for this call. I quickly found out otherwise. I quickly told Lou what Jocelyn had told me. We both thought it serendipitous that Dr Smedira was the one to approve this heart for me, as he was my surgeon for my myectomy. There was so much to do and very little time to do it in.

Both of us got on the phone to get things in place. Luckily, we were able to get a hold of Susan. She told us to not worry about the animals, her and her family had it covered. I called my mother, Lou called Louis back, as we began the process of preparing to leave. My mind was still scrambled. I could not wrap my head around the fact that I would be getting a new heart. At the same time, I was saddened that another family was going to be going through this holiday season without their loved one. It would be a start of firsts for them.

Lou and I finally got calls, texts and messages done for now. I still hadn’t heard back from Jocelyn, and it was coming on midnight. We both decided to try to lay down for a bit, as we knew the next several days were going to be busy and without much rest. Of course, intentions were good, but neither one of us could settle our minds enough to really rest.

I finally got a phone call from Jocelyn about 1am. Unfortunately, it wasn’t with flight information. She called to let me know that nobody had been able to get ahold of Suffolk airport. Now mind you, I had spoken to them 15 months earlier, and was assured they were there 24/7/365. This was also confirmed by Cleveland clinic transplant team. After numerous attempts and messages and no response, Jocelyn was trying to find another airport. We finally decided on Franklin airport. It was about 20 miles away, but still well within reason for travel. I got a phone call back about 15 minutes later. All was set for Franklin for a 4am landing and pickup. Jocelyn texted me all the pertinent info and Lou and I began the final preparations to leave.

We got on the road, and headed into Franklin. As we got closer, we noticed how dark everything was. Since neither of us had been to this particular airport, we weren’t sure exactly where we were going. I put a quick call into Trev, the guy that was opening the airport for us. He told us where to go and where we could park our car. We both got into the lounge and gave our heartfelt thanks to Trev. He had the radio on, so we could hear the jet as they were approaching the airport. We went outside to watch as the circled and landed.

My flight

The pilot got out and took our suitcases. Trev offered to fuel them up, which they declined. As we were getting on the jet, the pilot asked Trev how much for the airport fee. Trev refused to take any money from them. He wished us well, and we were off. I tell ya, I could really get used to private jet flying! We made it to Cleveland in about 55 minutes. We went up to about 48,000 feet and traveling about 550mph!

We arrived at the small Cleveland airport about 15 minutes for the hospital. A security officer was there waiting for us. He got us to the hospital and we headed up to the 5th floor to get checked in. Lou was able to go in with me for a while. But we both knew, once I got my covid test, he would have to leave, and we wouldn’t be able to see each other again. I got into my room, the nurse came in and got me hooked up to the monitor. So much happened in that first hour….plus I got there just before shift change. So very busy up front. Lou was able to spend a couple of hours with me, then he had to leave. The nurse came back in to do my covid test. From that moment on, I was considered to be in a covid cold unit.

Luckily, we were still able to talk on the phone. During all this, we were trying to get Lou set up in the hotel. It was difficult, since it was thanksgiving day, and the person we needed to speak with wasn’t available. We reached out to the pretransplant team for assistance. They reached out to the nurse case manager and the social worker. Finally Lou had a room secured. I still hadn’t heard when I was supposed to be taken into the OR, but that all was still a go. This whole time, I kept having to silence my monitor. As I was pretty much in bigeminy all the time, my monitors alarms kept going off every 4 minutes. I thought it was pretty hilarious. I had been dealing with this for so long, I was used to it. But it was nice having concrete verification!

While in holding in preop.

I had doctors and nurses coming in and out all the time. Blood work, and more blood work. IVs placed, questions asked and answered. Lungs and heart listened to. Then an anesthesiology fellow came in to place an art line.

My covid test came back negative, now all we needed was an OR time. We had been hearing through the grapevine, I would be going into surgery at 11pm. But nobody had been able to verify yet. Finally around 10pm, we got confirmation. And it got busy once more. At 1045pm, the OR team came to get me. I was wheeled into the OR, started getting prepped, and before I was fully placed under anesthesia, I asked once more to have someone get a picture of my native heart.

Then I was gone……