The driest May on record?

This morning on the news Pete Bouchard (who I have an inexplicable crush on) said that this could be the driest May in Boston since 1944. Well, there seems to be a heart drought too. There were no transplants done in May or April at Tufts or (I think) at any hospitals in the entire New England Region. Eek. I'm not sure if Christian is being very optimistic or just plain nerdy but he thinks based on the law of averages there is going to be a surge of available hearts in the near future.

To make things more interesting while I twiddle my thumbs I thought we could play a game. The other day I was told a story about a previous transplant patient and how she had friends and family submit their guess as to when she would get her heart. Turns out her guess was the closest! The best part is that she ended up getting her heart on (or maybe a day away?) from Valentine's Day. I'm cheesy and thought that was really exciting.

Those that know me well won't be surprised to hear that I did a little research to learn how this kind of thing has been done in the past. Apparently it is fairly common to have an official pool to guess baby due dates? There are sites like BellyBets and BabyBookie that organize it all! Clearly I don't have children. People have said I'm getting a "new life" with a new heart but I think comparing it to the birth of a child is a bit much, so I'm creating my own game to guess when the heart drought ends and my matching heart becomes available.

How to play? In the comments section list:

1. the dates you are guessing
2. your name 
3. (optional) something I should think about when I'm getting prepped on the table and the anesthesia hasn't kicked in yet and I start to panic. Jokes? A picture? A memory? Future plans?

You can list up to three dates and there isn't a deadline to submit. There will be a prize for the winner but I haven't decided yet - but at the least a Snickers bar will be involved.

Here is my guess:

1. June 26th, July 7th or September 1st
2. I'll (try!) to think about this picture to keep my jitters at bay. We took a huge risk having an outdoor wedding in Ireland and moments before the ceremony this rainbow appeared. 

Hopefully both of these droughts will end soon, the rain will fall and maybe we will see a rainbow in New England!! See? I'm cheesy.

Have a rotten day!

The moment I've been fearing has come. Okay, not my BIGGEST fear (obvi) but the moment when this situation starts to get old and everything feels the same. Sure, I get different nurse assignments and different visitors but it is hard to really distinguish one day from the next when you are living in a box. I get to walk down the hall twice a day with a nurse and otherwise I'm tethered to a pole in my room. It really makes me sympathize with how Oscar the Grouch must feel. I mean, the guy can't really move around in that can and for the most part he just sits there watching Big Bird and Grover happily gallivant all over Sesame Street. I feel you, Oscar. No wonder you are such a pill!

I'm lucky to have TV, books, random projects, phone calls and emails to keep me busy and honestly the days are flying by…but I've been here for 20 days and I'm starting to feel it. I'm a little grumpy. I understand that weather is the universally safe topic of conversation but it is starting to conjure up some emotion in me. Apparently some nights have been cold and we even had frost warnings about a week ago. I'm sure I'd be complaining too, but I haven't been outside in a while and the windows in my room don't open so I can't even smell the dirty city air. It takes a lot of restraint not to shout "Frost sounds good to me right about now!"

Most days I'm feeling totally fine and then I'll have a day when a harmless comment about the weather gets right under my skin. We are all allowed to be grumpy sometimes so I'm cashing in today. I have been thoroughly enjoying my Grouch Anthem this Memorial Day weekend but I can't help but think it can always be worse. So many men and women have given their life while serving our country. Some of those people have living parents, a spouse, children and friends that are going through really hard times. I need to keep myself in check. I'm going to purchase a fan for my room to simulate wind. The weather is fine!

Hospital Living 101

I've been hospitalized 5 times within the past 11 months averaging a week long visit each time. I think that makes me an expert at hospital living. I really hope that this post is useless for everyone but I thought I'd share my personal "rules" or "tips" or whatever you want to call them on how I make the best of my hospital stay.

This is in no special order and I think some stuff might be specific to cardiology...

Pack a sleep mask. This is somewhat critical to your happiness especially if you are grumpy between 4:00 - 6:00 in the morning like me. Why? Because phlebotomists only care about one thing. Blood. They will loudly bust in your room and turn on EVERY light switch they can find.

Similar to vacation you do get room service, TV in bed and you are trying (sorta) to relax. Even though you may be on a physical break do not mentally check out. I try to ask questions, know what pills the nurse gives me and ask if they just hand it over. We all have days when we accidentally put milk in the kitchen cabinet instead of the fridge (or at least I do!) and nurses are no different. Let me be clear that they have NEVER made a mistake...but we are all human. 

Pack hand sanitizer that smells good. If you are forced to use a commode day in and day out at least treat yourself to good sanitizer to make the experience slightly better. Plus, people walk into your room and think it smells fantastic...when little do they know it is hand sanitizer and they are standing next to a bowl of pee. Sorry. 

Pack your toothbrush, floss and mouthwash. Doesn't this seem like overkill? It's not. If you are restricted from showering for a number of days you will inevitably start to feel pretty disgusting. The one thing you can wash every day, all day is your mouth. Go nuts! It will make you feel better.

Unless you are extremely sick do not eat in your bed. When you are home would you eat a plate of steak and potatoes while lying in bed? Probably not. Try not to do it in the hospital. It makes you feel gross/dirty and even though your bed, eating space, and possibly even your toilet is within arms reach there needs to be a distinction between these activities. BONUS: Don't throw away any food in your room! Waking up to old chinese food sitting in the trash next to your bed is a horrible start to your day. No amount of Pure Paradise scented hand sanitizer will mask the smell. I've learned this the hard way : (

Be kind, respectful and obedient to the hospital staff, especially the nurses. They are taking care of you 24 hours a day and most are too busy to eat lunch. Sure, I might have a massive stash of chocolates and Twizzlers at the ready to keep their blood sugar up, but it's really about respecting them. I'm surprised when I hear that patients aren't cooperative or have attitude. Wait, aren't they trying to save your life? I think nurses should play this scene from Jerry Maguire as a patient orientation video. They are just trying to help!

And on a super unrelated note, Happy Red Nose Day! Thanks to my Aunt Rita for my nose!

My favorite littles and My Little Pony?!

What a great day yesterday! I not only had a partially Swan free day but I had a visit from my sister Kristie and the cutest children ever - Harry, Kaydence and baby AJ.

Harry said "Auntie, you look weird!" and Kaydence told me all about the time she went to the hospital but they let her go home and they didn't put wires on her. So cute.

Earlier that day I was hanging in my room when the door busts open and an actual miniature pony walks in my room! I wasn't on drugs. Lily is a volunteer who comes to the hospital a few times a year to visit patients. Truth be told...I'm really not a fan of ponies or horses. They are pretty and everything but I had a bad experience in Ireland riding a horse that decided to gallop and I was bouncing around wildly and did my best to stay on. It was terrifying. Anyway, Lilly comes over to my bed and I gave her a quick pat on the nose. Then her owner says "Oh, she wants to kiss you." so I laugh timidly hoping the urge will pass. We don't get everything we want, right? Then the owner says that I need to bring my face closer. OH. NO. WHAT? I was scared Lily could sense I didn't like mini ponies and would bite me, but I do as I'm told…and I got a kiss.

I was too shocked to take a picture when Lily was in my room, but here is her hiney leaving and some guy she was with.

Stop lookin' at me, swan!

Most cardiac patients are familiar with the dreaded Swan, or right heart catheter that is placed in the jugular for a few days - except in my case. It measures heart pressures and lots of other stuff (???) to help better understand what is going on. The inventor is Jeremy Swan but I think many call it that because the catheter also resembles the shape of a swans neck. It sucks. It sucks because I can't sleep well and I'm pretty much tethered to my bed because they don't want it shifting around. This means I can't go into the bathroom or shower or do much of anything. I've had mine in for 12 days which is pretty much the max before risk of infection. See the blue guy on my neck? That's it. The other messy wires really aren't as crazy/serious as they look…although I was telling my sister that I'm convinced they are secretly playing Pin the Tail on the Donkey on my chest. Thoughts?

The exciting news is that I go on Swan holiday today when they pull the sucker out for a whopping 24 hours! This means I can roam the hallways, take a shower and I can forgo the commode (or the throne, as I call it) and go into the actual bathroom while on holiday. The little things : )

A little history and some future plans...

I've been hemming and hawing over the idea of blogging for a while now. In some ways I'm more scared to put myself out there than over what will come in the next few weeks, months, and years of my life which is a WAY bigger deal. I was diagnosed with Cardiomyopathy, a type of heart disease at the age of 21 and managed to maintain a normal active life up until the past year when my heart got weaker. I've been in and out of the hospital for months and a few weeks ago my cardiologist decided enough was enough - admit me until I have a heart.  I've been here for almost two weeks with IV meds along with oral meds and a catheter in my neck. So far, I've been doing well physically and emotionally but there is still road to travel.

As a petite, 32 year old female who is sharing a hospital floor with all men who are mostly 20+ years older it can get a little lonely. I've always struggled with the fact that it doesn't make sense that this happened and it would have been nice to connect with someone around my age going through the same situation. I intend to use this space to clear my head, share random stories about my hospital life and keep friends and family updated. However, I really hope that by doing this it will someday help another young person get them through this crazy journey. 

One of my nurses had a great suggestion - each day write down something that I want to do or accomplish in my "new" life after transplant. Some people talk about running marathons after transplant but I really have no interest in that! I hate running. First on my list will be to go hiking with my husband. Earlier on in our relationship when I was feeling well Christian and I would go hiking on the easy trails and we really enjoyed it. Then, last fall we went to the White Mountains for a long weekend and stopped to go for a hike...but once we got to the actual base I turned to him and told him it was too steep for me to handle. Even though he is my husband and totally understood I was still embarrassed that I couldn't do it. Then we went to Colorado for a friends wedding and I ended up getting sick and had to stay in the hospital while (I insisted) Christian go to the wedding. When he called that night he told me that they all went hiking during the day and I was so envious of the fun they had. Since hiking is one of his favorite things it made me feel bad that I couldn't experience it with him. It will feel good to be able to share that activity again and I imagine once I get to the top of the mountain it will feel like a real accomplishment!

So what do you think? Any other suggestions I should add to the list?