How I'm managing life after transplant

It's been a month since my new heart and I thought I'd share how I'm managing it all so far. It's a lot of work and I've learned some good and not so good things! Hopefully my experience so far will help other transplant patients or anyone recovering from surgery.

My mistakes on the first night
For two months straight I took some sort of sleeping/anti-anxiety/pain med combo before bed. So why on earth did I think the first night home that I was so tired I'd just pass out cold turkey?!?!  It was a very long day leaving the hospital and going home. I exercised a lot (for me) which meant walking from my hospital room to the car, car to the house and I was emotionally drained. It didn't matter.

I was up all night, had to rummage around for my pain meds in the dark and ended up crouched in the bathroom (scaring the s@$! out of Christian) trying not to pass out because I got up too quick and was mega dehydrated. Lesson learned. Here is what I should have done and suggest...

1.) Take your pills even if you are not in pain at that moment. Once you lay down your body starts to ache.

2.) Set up your nightstand and bed so everything is within arms reach. Sleeping is one of my biggest issues so this is important. Include:

• Pain/sleep meds 
• Water
• Hand sanitizer

• A notebook (your mind goes nutso and you may want to write or list questions for your next appointment)

• Put your Patient Therapy Log near your bed along with your pressure cuff, thermometer, etc. and do all your vitals as soon as you wake up.

• Borrow/buy/make some sort of body pillow. I used my sisters Boppy and it has been major. You won't have a fancy hospital bed that will contort your body if your chest or back hurts so the pillows help to get you there. 

• I was a heat pad junkie for the entire month. You can make one out of rice and a long sock...but I got this entire spa hot/cold kit for my birthday and it is amazing. Take it to bed.

Drugs

Keep pills within view so you see them when you wake up and pull that days pills from the case. I take it with me around the house as a reminder.

I take different meds at 9am, 12pm, 6pm and 9pm. To keep track of when to take everything I've been using an app called Dosecast.  It stores my med list with the dosage, the time(s) to take it and it sends me reminders. It can also track how many pills remaining so you know when to refill. I love it.

I took a picture with my phone of my drug list so I always have it. Also, if you forget to bring it to your appointment you can just pull it up on your phone.

The pharmacist suggested two people fill the weekly pill box so someone can double check. I already learned that this is important - one pill bounced into another day and I caught it later. If there was someone watching when the box was filled we would have caught it then.

I also labeled the top of my containers with a sharpie so it is easier to find them.

Side effects
Everyone is going to handle the meds and recovery differently. Overall I've done well. Lack of sleep is my biggest issue where I used to sleep 10-12 hours and now I'm getting 5-7 hours. Part of it is the steroids just keeping me up but I also have back/neck/shoulder pain and headaches at night. I wake up a lot at and I'm usually up for the day between 5-6:30 am.

Trembling - Mostly hands but if I'm tired my body gets super weak and I feel a little shaky all over.

Chest/sternum pain - They cracked my ribs. Bending down/reaching/laying on my stomach and unfortunately laughing really hurts. Sneezing is the most painful. Hugging a pillow while sneezing makes a huge difference. Tufts gives a heart pillow for a reason! When I'm not within reach of a pillow I will put my hand on my chest and apply pressure. That does the trick too.

Day of transplant/A few weeks later

Chubby face and weight gain - So far I've gained a little weight but I think it's unrelated to the drugs and just healthy - eating normal meals again weight gain. I think, however, the size of my cheeks are a result of the steroids! I was warned this would happen. It should lessen once the steroid dose goes down...hopefully.



Protection - home and outside (mask, sani, sun)

I took the big plastic hospital sanitizer bottles (see nightstand pic above) and replaced them with blue glass pumps and have them all around the house - living room, kitchen, porch, bedroom so I see them and they look a little nicer : )
I keep sanitizer and masks in my bag and in the car so I have them when I'm out. I still have to sit in the back seat of the car because my sternum isn't fully healed. It is really boring sitting alone back there and I feel powerless because I can't change the channel or the AC. To keep myself busy I've started a mask selfie collage!

The meds increase the chance of skin cancer. As an already fair skinned lady with moles and freckles I'm taking no chances. Hats, screen, shade. And I just bought an umbrella and UPV 50 rash guard for the beach. Take that, sun.

Scars and bruising

First, I need to credit my surgeon for his knife skills. My scar is pretty thin. I've also been using Mederma a LOT and I do think it helps. Scars are still a little red but healing well. I also have three holes in my stomach from the chest tubes that were fairly large. They are now about the width of a pencil eraser and are slowly getting better.  My neck/catheter scars are another story.

I also have random bruises all over my body that are hanging around : (

Mental health
It is still a lot wrapping my head around all of this. I'm trying to keep up with knitting and painting and I'm cooking and reading more which relaxes me.

My porch has been my little zen space where I spend a lot of my mornings. I still sit there thinking about how lucky I am that I'm:
1.) breathing
2.) breathing without difficulty    
3.) breathing fresh air! Outside!

And of course, able to snuggle with Ritz.