Today was a big day in clinic - not only was it the transplant follow up and biopsy, but also my post-op visit. Originally it was going to be today and tomorrow, but since they are trying to keep people at home as much as possible they decided to do it all today.
I was up and out of bed by 7am, got dressed, had an Ensure (since you're not really supposed to eat before going to the cath lab but I knew I needed something and they said that was ok), and we were able to head out by 7:30ish. Last night we packaged up the couple hundred ear protectors Peter made, and I wrote thank you notes to the nurses and staff in the ICU and the cardiac floor I was on. The plan was to drop them off as a thank you, and hopefully the ear protectors, which is a simple piece you put on the back of your head but can attach the elastic of face masks to, will help them feel more comfortable. I made masks for two of my nurses who had me for 4 days total and were wonderful, and since I'm going to be making masks anyways I offered to make them for the other nurses and staff that worked with me while I was inpatient. We divy'd them up between the two floors and then kept some to give to the heart transplant clinic staff too. I had also packed all my pills for the day, my booklet that I write my bp/pulse/weight/temp in each day, and lots of snacks for after biopsy.
We got to the hospital, Peter dropped me off in front, then went and parked the car. Masks were on before we got out of the car. We went through screening, grabbed a wheelchair and Peter wheeled me to clinic. I had a blood draw, which took a few tries since we needed to save my good vein for the IV later - but they got it. Then I met with the transplant nurse coordinator - and this time it is the one who is assignd to me and I talk to on the phone all the time. It was good to see her in person, and not have to re-explain everything. She appreciated the ear saver and wants a mask, and said she would ask around and let me know who else on the team does, which I'm excited about. Next the heart transplant doc came in, and he thought things were looking good. He changed around meds a little bit, and hopefully that will make me feel even better.
Next we headed up to the cath lab. This is in the main hospital building, which is a bit of a ways from the clinics, so Peter wheeled me over there. At that point I was pretty tired, so was looking forward to laying down and having the hour after the procedure to stay laying. We got there, I got ready, and then Dr. Schroder, one of the transplant surgeons (he is the one who was going to do my dry run, and who went to get my heart and sent me the video which is on a page now if you didn't see it - I think its amazing to look at) came over and took out all my staples and stitches. Peter held my hand through it, as it was a little painful. Dr. Schroder gave us some instructions, said he would love a mask, and said he will ask the heart transplant team who wants a mask. I'm excited to do a little something to show my gratitude. After the staples and stiches were out, it felt much, much better. After that just had to wait for them to take me back. I laid down with lights low and rested, but didn't fall asleep.
After a delay for an emergency case, I was taken back, and the biopsy only took about 20 minutes. It was cool to see it on the monitor - I could see the little claw grab at something, and then they would take it out. I'll get the results tomorrow. While I was in the cath lab, Peter callled the 3rd floor cardiac step down unit and got the ok to drop off the bag, and he said the charge nurse was really excited about the ear protectors and that they would love masks. He got lunch, and then waited until they called him. When I was brought back to the prep area, it was an hour of laying down and they let Peter back. The nurse was able to raise the head of the bed once 15 minutes passed, and at that point it was about 1:30pm. I had some orange juice, and then a protein bar, a cheese stick, and some almonds from home. At the end of the hour, I had to do a few more blood pressures and then I was good to go.
Next, they came to do an echocardiogram (ultrasound of the heart). This was Peter's first time seeing it after the transplant, and really my first time as well, being able to really pay attention, as last week it was done during the biopsy. It was kind of amazing to watch an echo and see a normal formed, normal functioning heart. The person doing the echo pointed out each part of the heart, and it was pretty cool to see how different it looked from my original heart. It was also a little surreal after 30+ years of seeing my old heart on the monitor. I think this is one of the moments where it really hit me that hey, I have a new heart.
Once the echo was done, I still needed an x-ray, which was back towards the clinics. They called for transport, which means someone comes with a wheelchair for you. We had to walk past the building where the ICU is, so Peter headed up to give that floor their thank you bag while I was brought over to x-ray. Peter said that the nurses were touched by my note, excited about the masks, but said that the ear protectors were "currency" and they were extremely grateful to have them. I'm really glad that we can do our small part to support the healthcare workers during all of this. Peter is going to keep printing the ear protectors, and I'll be making masks. While he was dropping things off, I got to clinic, was called back got my xray, and by the time I came out he was ready to take me to the car.
We got in the car about 3:30pm, and then it was off to home. My chest is feeling a bit more sore than normal (which I'm not surprised by). We stopped by Walgreens to pick up my new prescription, some guaze, and some steri-strips (and by we I mean I stayed in the car and Peter went in). Got home, immediately stripped down and put clothes in the washing machine and changed into pj's (well, I did, Peter put on real clothes). Then lounged on the couch. Peter was wonderful and made dinner, and now I'm back on the couch writing this while he makes me chocolate chip cookies.
So most clinic days won't be this long, but I now go to every other week appointments, which is exciting. I'm hoping that a good nights sleep will lead to my chest being less sore so that I can get back into my routine, but we will see. Tomorrow may need to be an easy day.
Here is hoping that all of you are doing well, and that you're finding ways to use your time. Please continue to stay home - in a lot of places the curve has flattened, and we are in a crucial place that if we keep it up this may go away more quickly. Since they now know that covid-19 is airborne, please please wear a mask whenever you are out and going to be around people - but keep social distancing. It is looking like a lot of people may have the virus without any signs, and if you do have it and wear a mask that helps to protect others from getting it. If you are exposed to someone who has a mask, it decreases your risk some. And if you both are wearing masks, the chance of infection is very, very low. And if you don't have one and need one, let me know. I'm (hopefully) going to be cranking these out and a few more isn't hard to do. Especially if you're a friend of mine in healthcare, let me know. But really, the best thing to do is stay home.
Ok, shout out to my amazing husband. As I finished writing this, he brings me two warm chocolate chip cookies, which taste amazing, and a glass of cold milk. I am a lucky, lucky woman. He takes such good care of me.
BACKGROUND
As many of you know, Jodie was born with congenital heart defects and had surgery at 10 days and 18 months old. She did ok throughout childhood, but had to be on some medications through high school, then another was added in college. Jodie went on to grad school, and unexpectedly required a valve replacement in 2007. It turned out she was in the early stages of heart failure, but only found out after the procedure. She needed to get a pacemaker since her heart stopped beating on its own, and then a few months later upgraded to a pacemaker/ defibrillator due to low heart function. In 2008, Jodie was told that she would eventually need a heart transplant, and that the doctor predicted it to be necessary within the next 5 years.
In the 12+ years since then, Jodie was upgraded to a bi-ventricular pacemaker/defibrillator which helped her feel better but didn't improve her numbers, had it replaced two more times due to the battery almost running out (normal process), was put on a new medication that helped her feel much better but still didn't improve the numbers. Then in April of 2019 things started to get interesting. Jodie went into an atrial flutter and after 3 weeks, had to be cardioverted (think being shocked with paddles, but more controlled and while under anesthesia) to get her rhythm back to normal. Then over the summer she started feeling more and more tired, and having slightly worse symptoms. Jodie had some tests in August that showed things were worse, and the doctor told us in October that we would need to check back in early 2020 to see how things are. After having those tests, its clear that Jodie needs to have a heart transplant.
WHY DID WE START THIS BLOG?
Jodie and Peter decided to keep this blog for a few reasons. First, as a way to keep our friends and family up to date. Second, as a way to share how we are doing and what we are going through (and potentially what we need). Third, as a way to document this journey.
We have learned that we want the people around us, and those who care about us, to know what is going on, but don't always have the energy to talk about it over and over. We will be sharing was is "on our hearts" as we go through this journey. We welcome you to check in as often as you like. Thoughts and prayers are much appreciated. You are always welcome to reach out individually, but please feel free to leave comments on our posts and we will try to respond to everyone when we can. We are also planning to use this platform to share news when we don't have time or energy to send to everyone.
Some of our posts may be more emotional, and some may be about more mundane things. Once we get to step 4, it could take anywhere between 1 day and a year or more to reach step 5. We have no way to know. As we are in that waiting period, we do know that one of the things that will be helpful to us will be to keep busy - board game nights, movies, etc. If you are nearby, please do reach out. While Jodie can't be doing anything too strenuous right now, we still want to connect with people. If things come up that we need or could use help on, we may post it here, or reach out specifically to those who have let us know they want to help.
Thank you for walking with us through this journey as we share what is on our hearts. Please check back for updates. We will add information as it becomes available and as we go through the process ahead.
God bless,
Jodie & Peter Elliott
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One month post transplant!
Wow. It is almost unbelievable that it has been one month since the transplant. So much has happened, with two weeks in the hospital, and ...
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