Reasons to smile

I learned the basics of how to crochet. I also learned that I need to loosen up! I'm crocheting too tight but hoping with practice I'll get better. I was always mesmerized by the lady on the subway who would knit/crochet with her eyes closed while humming. That could be me someday.


I called down for room service and ordered cream of broccoli soup and a side of broccoli for dinner and then I burst out laughing when I realized my broccoli love. I really get a kick out of myself.


My MIL brought me a bunch of goodies which included pocket tissues amongst other things. I'm thrilled. If anyone has experienced hospital tissues they would understand.


Kaydence, my niece, brought me this beautiful sign that her classmates made. I must admit that watching her attempt to unravel it to show me was just as cute as the sign itself. How could this not make you so happy?


I have zen hour. Daily. I realized that I needed a little time out, inhale/exhale space without anyone entering my room. That, and I needed the discipline to totally unplug. Each day my nurse and I will plan when I want my time. So far, so good.


I discovered a new hospital chip clip. Don't tell.


My nephew, Harry, along with his classmates each made me a get well card. I do wonder how this assignment was presented to them but it is clear that they knew:

• I needed a heart 
• I am in the hospital. Some even drew me in a hospital bed. 
• I am Harry's Auntie Shelah/Sheloh. Close enough.

They nailed it.

A confession

I was a swan free lady on Monday. You would think I would really love a day without my swan because I can shower and move around my room without feeling like a dog on a leash and I even got to breath fresh air for the first time since May 5th...but I hate it. I always secretly hate it and everyone is so excited for me and tries so hard to make it a good day. I should be happy that day but inside I'm an emotional wreck. I just feel like I'm hitting the reset button. Like I'm starting all over again since I didn't get a heart in that two week period so we are going to try again. Another two weeks. Keep waiting and while your at it try not to get another infection.

The truth is that I really haven't waited that long and some people are in the hospital for close to a year. They are fairly confident that the timing will be less but they also can't give me a date or much of a timeframe. I'm a planner. I love to plan. It isn't the wait, really, it is the unknown of when that is driving me nutso. It is like enrolling in school and having no idea how many credits it will take to graduate. It could be 2 or 110 credits and you keep going to class until someday you are notified that you have fulfilled the requirement, which is different for each student. How does that sound? Okay, bad analogy, but the point is that it is not very motivating. I know some things can't be planned in life but for the most part it seems like there is some sort of approximate measure that can be applied. Right??? Even if they could say "9 months" or "December 1st" it would help. Sure, I would be a little shocked but I could start making Halloween costumes (like I know how?) or pinning Christmas recipes and I could focus on that. I realize I could still do that now but it isn't the same.

So even though I was feeling blah I knew there was a plan in place for Monday and I'd likely feel better getting out while I could. We got lucky with nice weather. The nurses discovered that the Children's Floating has outdoor space and even though it is for kids they made an exception for me. I got to eat my ham, turkey, provolone, banana pepper, lettuce and tomato on a spinach wrap lunch under the sun. It was nice. Despite my stoic expression I did enjoy myself. And can I look like more of a creep in that boat?

So, what do I do all day?

The other day I was talking with one of the nurse managers about long term patient activities and ways to make the time pass. Your life here can easily start to feel like Groundhog Day (I swear I'm not obsessed with Bill Murray) and finding ways to differentiate one day from the next can be difficult.

So what DO I do all day? There is always vitals, swan numbers (twice a day), pills, getting weighed, tracking my fluid intake, some sort of awkward exchange between doctors/residents/fellows, discussion with my nurse about bowel movements, sleeping pills and water pills, walking twice in the hallway and someone commenting about my room smelling great. Again, it's just hand sanitizer.

So in between all that here are some things that keep me occupied:

• Knitting. Or trying to. My friend Caroline got me on my feet and my Aunt Ellen is coming to teach me some new patterns and how to crochet. 
• Coloring in my adult coloring book 
• Chat, text and email friends/family and plenty of conversation with the nurses and tech's about everything under the sun.
• Ring cleaning. One of my nurses is engaged and I was explaining that she needs to keep her ring clean. I had Christian bring in my ultrasonic ring cleaner so I could clean her ring and by the end of the week I had a full book of work. The nurses hands were dazzling. 
• Paint by number. This one. I'll report back if I actually get it done. 
• Reiki/reflexology/mind clearing/aromatherapy (roughly 20 minutes every few days. It is amazing.)
• TV/Documentaries and a movie
• Orange Is the New Black
• Friday Night Lights (Season 1. I needed something light.)
• The Jinx: The Life and Death of Robert Durst 
• I Hate Christian Laettner
• Vanishing of the Bees
• The Following (This one started strong but got to be a bit much. I jumped ship.)
• Game of Thrones
• Silicon Valley
• Joan Rivers: A Piece of Work
• Chef
• I'm embarrassed about these. I don't smoke, drink or do drugs and need some sort of guilty pleasure...here it is. The Bachelorette (this season is horrible and I might call it quits), Real Housewives of NYC, Teen Mom 
• House of Cards
• Grace and Frankie
• Craft/charity projects that my Aunt Rita coordinates.
• Visits with friends and family. Oddly, yesterday only, I had extra visitors. I felt like Ace Ventura. I had this sweet little lady bug stop by and then these disgusting pigeons. And I realize the stuffed animal fish tank is actually a dog and not a bear. Floppy ears. I guess I'm not Ace after all. 

Keep your distance

Lily is back. Sigh. I begged my nurse to make sure she didn't enter my room. I feel sorta guilty about it because a lot of patients seem to enjoy her company but I can't help how I feel. Why can't they just bring a bunch of puppies instead?

I did venture into the hall to get a better mug shot. For the record.

A few funnies this week

So I hit a little bump getting the infection and it was tough emotionally too. I thought each day when I feel like it this week I'd write about the funny things that have happened to me or at least made me smile while in the hospital. Laughter is the best medicine, right? Here goes.

When I had my infection I also had some pain on my side/rib. I suspected that it was probably just a pulled muscle from shivering, but to be cautious they decided to order a CT scan to check things out. For some reason I wasn't scheduled for my scan until 10pm and they asked me to drink contrast liquid which was a struggle for my already nauseous belly.

Well, they couldn't take me until midnight. So, finally, I'm sitting in radiology exhausted, edgy and with a barf bowl on my lap just in case waiting for the tech to give me further instruction. Here is our exchange.

Tech:  Have you had a CT scan before?
Me:  (annoyed) Yes...but it was a long time ago so I don't really remember the process.
Tech:  Alright. We will get you on the table and move you into the machine. After we scan you we are going to put some contrast in your IV and scan you again. When the contrast goes through you will feel like you are peeing all over yourself, and that is okay.
Me:  Okay. Wait. What? I know it is 12:30 in the morning but did I just hear him correctly? Whatever.

So I'm in position and it is time. He injects my IV with the solution and I feel like I'm being NUKED. I'm secretly panicking because this potion is much stronger than I imagined. Then, IT happens. I start peeing all over myself. OMG. OMG! I didn't really believe him. Actually, he is wrong. It doesn't just feel like I'm peeing, I AM peeing all over myself. I have no control over my body. This is awful.

Tech: (from a speaker while he is in a separate room) We are all done. You did good.

My body starts to cool down and I'm slowly being moved out from the machine. I don't feel wet but I'm still not sure what happened so I look down...all clear. Wow. He was right after all. It did feel like I was peeing all over myself and it is OK. Phew. Time for bed.

I feel good, I feel great, I feel wonderful... I feel good, I feel great, I feel wonderful...

My sister always got the biggest hoot out of the movie What About Bob? so I'm applying some Bob Wiley coping techniques since it has been a rough few days. First, I'll warn you that this isn't going to be a happy post. I want this space to be positive and something I can look back on to remember stories but it also needs to be realistic. I remember reading another patient blog where he wrote about some downfalls and I'm relating to that now, so maybe someone else can relate to this situation in the future.

Wednesday was when they had put my new swan in. It went fine and I had the usual schedule of pain, take pain meds, take anti-nausea meds because of the pain meds and lay in bed all day. I ended up vomiting anyway but I'd still say it wasn't a horrible day. Next day I felt tired but otherwise fine and ate, walked and did all my normal nursing home-esque activities. A few people made comments that I looked really tired and my face looked gray or blue but that isn't super unusual for me! That night I ended up spiking a fever and endured all the lovely symptoms that go along with it.

There are a lot of little details that I'm going to omit that made the weekend pretty dreadful. Basically, they think I had a line infection so they pulled my swan that was just put in along with another port which resulted in me bumping down to a 1B status on the transplant list while swan-less. There was also a whole ton of tests, new IV's, new meds, questions from the infectious disease team, no sleep, no appetite and eventually me sobbing at random times around strangers and/or really awkward people that didn't know what to do.

The swan free weekend of being allowed to pee in the bathroom, take a shower, and walk around freely was a bust because I was too nauseous to do most of that. In the medical world all of this really isn't uncommon or a big deal but I'm starting to lose my sh#t! Thankfully I'm slowly feeling better and did manage to sleep last night and I ate today.

Good news is that I'm a 1A again (since yesterday) and no matching hearts came through over the weekend, so I didn't miss out.

The other news is that my two pet sons met on Sunday. Looks like they hit it off, yeah?

10 Tidbits

1.  I got my swan pulled yesterday and got to shower and have dinner in the hospital atrium. I'll get a new one in a few hours. It is getting old.

2.  There is a new girl on the floor! She is young! I know that isn't a good thing but it is nice to know I’m no longer one amongst the older gents. 

3. One patient who has been here for a while is Mr. Spero. His dog Nero comes to visit nearly every day. Nero Spero.

4.  The hospital I'm at is in Chinatown. Apparently this has made a major influence on the dietary decisions for the "heart healthy" menu. Listed as a breakfast option - Heart Healthy Egg Foo Yung Omelet.

5.  I FaceTime with Ritz every night.

6.  There is a helipad right outside my window and I watch the medflights come in and out. 

7.  There is another patient waiting for a heart like me. He has been here since December and every time I watch a medflight land I hope it’s a heart for him. Apparently he was backup for a heart recently so I hope that means it is his turn soon! (They select a primary recipient and a backup. If the primary spikes a fever or something happens last minute where they can’t transplant the organ goes to the backup when possible.)

8.  My nurse is a beekeeper and I’m somewhat interested in starting a hive myself.  I’ll probably need to wait until next spring but it could be a new hobby! Although Ritzy's eye will look like this if he doesn’t leave them bee…

9.  I do reiki, reflexology, meditation or aromatherapy at least once a week. The hospital offers spiritual care and Eileen comes to visit me and is amazing.

10.  I have a roommate! Just when I was thinking that I needed a pet fish my aunt arrives with the best fish bowl ever. I've owned many fish in my lifetime and even drove from DC to NYC with my fish safely in his travel mug. He then lived another year in NY! Many of my fish have been named after presidents so I went with Teddy Roosevelt. The fact that Ted also resides inside the stomach of a teddy bear seems appropriate.