Many of you have asked me what my days are like here and how I am doing. Since I am two weeks in I do feel like I have been able to establish a bit of a routine. I use that word loosely, of course, because one of the first things I learned was the only consistent thing around here is inconsistency.
Well, there are a few consistent things such as my 5AM wake up! This is the time of day that I am most confused as to where I am! Is it a prison or a hospital? What feels like a fleet of people enter my room and start doing things to me before I can even fully wake up. My blood is drawn, my blood pressure is taken, my temperature is taken…then I have to stand up and get on a scale to be weighed, have my blood pressure taken three more times and then I get to head to the bathroom and pee into a container since they are keeping track of all the fluid going in and out of me.
After this they leave me alone for a while and, if I can go back to sleep, I do. I wake up about 8am and order breakfast. While I’m waiting for breakfast I spend some time readying my Bible and praying. After breakfast I do the best I can do with all of these tubes coming out of me to get washed up and dressed and looking somewhat presentable! I was so discouraged when I first came here that I was having to wear a long bulky hospital gown with pj pants or leggings underneath. I couldn’t believe this would be my new attire indefinitely until I left this place! So I found a website called shouldershirts.com that had hospital type shirts with openings at the shoulders to allow for all of the things I have going on. It was a very happy day when those shirts arrived and I could stop wearing the gown!
So I put on my shoulder shirt and my lounge pants (not sure what to call them but you know what I mean right? the pants you can’t wait to put on when you get home from work!) and head out to the hallway for my walk. My goal is to walk a mile in the morning and a mile at night so I tracked down the PT soon after I arrived and found out that I have to walk 15 times around the floor I am on in order to get to a mile. There are a few other heart transplant patients here waiting as well. As I have been walking I have met all of them and sometimes a few of us will walk together. The doctors want us staying strong so we are expected to keep moving and to strengthen as much as possible so that our recovery will be quick.
After walking, or sometimes before, the doctors will stop in to see me and check my numbers for fluid in my heart. Because this is a teaching hospital there are always several people doing rounds with the doc. Soon after they come by it is usually time to order my lunch since it takes 45 minutes to arrive. While I am waiting on lunch I may read, talk on the phone or maybe even try to color in one of my many adult coloring books given to me in preparation for this stay. I eat lunch and then resume any of those activities unless I have visitors. I think I have had visitors during almost every afternoon since I started having visitors and I am thankful for the many friends who have taken time out of their day to come see me and encourage and pray for me! After a few days here the docs gave me “patio privileges” (again you see the confusion as to hospital or prison!) so I get to go down to the little side patio by the gift shop and sit. That has been a interesting experience that I’ll possibly elaborate on later. It is so awesome to feel the sun and smell the fresh air! Several days Joe or the boys will bring Lizzie, my miniature daschund, to visit which brings me much joy!
After I go back up to my room I order dinner and return to my to do list or my long list of “things to do when you’re bored”. Some time in the afternoon I also will go to the “gym” and exercise. That means I am riding this machine I call the pedal pusher- it’s kinda like a stationary bike but you push the pedals and pull and push the arms. It is a good workout so I try to get in there every other day to do it. Once I have eaten my dinner I go out for another walk and get to experience a shift change while I’m out there. That can make for some major traffic in the hallways but I’ve gotten used to it and it’s fun to see who is coming and going.
Many evenings after my walk or during it Joe will come either with the boys or without and keep me company for a few hours. We usually watch tv or a movie or something. Then I try to start winding down around 10:30. The nurse and tech do one last swoop through my room checking vitals and giving meds along with checking my numbers for fluid in my heart. So around 11pm everybody leaves and I am left alone to fall asleep. I sleep until 5am and the day starts all over again! It can feel a little bit like the movie “Groundhog Day” in here so I do try to break up the monotony a little bit.
I thought it would be interesting to end this post with a list of all of the Mayo staff who enter my room in a single day so here goes… Nurse, Tech, Transplant Doctor, Resident doctor, Nurse Practitioner, Head Nurse, Caring Canines dog and owner (love this one!), Occupational Therapist, Physical Therapist, Dietician, Social Worker, volunteer who has a musician/singer to sing to me (awkward!), Picc Team Nurse, Respiratory person, housekeeping, laundry guy, Nutritionist, Support Group leader, room service. I’m sure I am probably missing a few even still! So all in all I get about 10 minutes alone each day! Jk! I am thankful for the good care I receive here but it is pretty hard to have some peace and quiet!! Well, I hope I haven’t bored you to tears but now you have a window into my world. It really is like living in a whole different world here.