When you are on the active Organ Transplant List, you will need to have a “Go Bag” ready.
What You Need In Your Heart/Lung Transplant “Go Bag”
Packing for your Heart Transplant is an exciting and important part of the transplant process. When you are on the active Organ Transplant List, you will need to have a “Go Bag” or hospital bag packed and ready. It is a great idea to take the bag with you in the car everywhere to prevent having to return home to collect it.
Even 4 months after transplant I still have a go bag ready. This is because I have had a number of rejections and have been re-admitted to hospital urgently. The one time I didn’t have it with me we were actually at St Vincent’s when they admitted me and my poor Husband drove to the Blue Mountains to pick up my hospital and bring it back to me in Darlinghurst.
What You Need In An Organ Transplant “Go Bag”
The following is a hospital bag checklist that I use and the reasoning and experiences behind my choices.
Medications:
Take a few days’ supply of your Pre Transplant medications just in case you arrive after pharmacy hours. As you will be preparing for surgery the team may adjust your regular medications to ensure you are in top form for the transplant surgery.
Keep an accurate list of all medications. I now keep an updated list on my mobile for convenience. Watch out for future posts on Medications, Anti-Rejection Medications and Non Anti-Rejection Medications
PBS TIP:
Ask the hospital Pharmacist to record all scripts dispensed to you as an In or Out-patient on the Australian (Pharmaceutical Benefits Scheme) PBS record. Even if you have not paid for medications while in hospital they count towards your PBS Safety Net Limit. This means when you reach the thresh-hold you pay less for each prescription for the rest of the calendar year.
Post Transplant you will often feel like you are always at the Chemist! In fact you may feel like a walking talking Chemical Cocktail!
Ear Plugs
Take dozens of them. A cardiac care ward with all the cardiac patients’ telemetry buzzing and beeping is the noisiest of wards. The first free days you will be in ICU which is even more noisy.
Eye Mask
At St Vincent’s Hospital you are not given the option of a private room unless you are infectious. With three other patients in your ward there is always a light going on and off regularly throughout the night.
You may even find that after the morning rush of Doctor visits, blood tests and other scans the middle of the day is the best time to catch up on an hour of sleep. When you are in the ICU it is always brightly lit.
Air pods/ Headphones
I used music, meditation and white noise to filter out excessive ward noise. Please look out for a future post on Sleeplessness In Hospital.
Slippers or thongs/slides
Hospital floors are cold, hard and not hygienic.
Undies, Size Up
You may need at least 2 pairs a day as you may have blood stains from abdomen drains and leads. You can get more brought in for you as you need them.
Take undies that are 1 to 2 sizes bigger than you currently are. I went into my transplant surgery weighing 58 kilos and came out of ICU at 70 kilos! This was due to the extra IV fluids I needed to support my new heart during surgery. I was given oral and IV diuretics but it still took many weeks to lose some of that fluid weight.
HOSPITAL UNDIES TIP:
Post transplant, I was unable to wear my own undies due to fluid retention and a catheter. I went without undies for EIGHT DAYS. After I was finally able to have a shower and put on my own clothes, I said to my roommate that it was great to finally wear a pair of undies. It was then that I found out that there are disposable hospital undies available that I could have asked for and worn.
Front opening wireless surgical bra
I remember shopping for a front opening surgical bra with a friend before I had bilateral breast cancer surgery in August 2022. I suggested that I would rather have my boobs out than wear such an ugly bra. Upon reflection it was the least of my worries and these bras turned out to be practical and comfortable. Still ugly though.
Strapless, wireless bandeau style bras
These are comfortable and easy to get on and off while having tubes, drains and cannulas inserted as you can step into them and pull them up rather than over your head or reaching behind you. Your arms are also free from IV tubes.
A Sarong
Yes, you read that correctly. If you have cannulas and an IV attached to your arms it is hard to get dressed independently. You will need a nurse to unhook the IV fluid bag and pass it through the garment sleeve. You can use the sarong to wrap around your torso over your underwear and PJ pants so you are not stuck in the bathroom until a nurse can save you. It makes you more independent and an absolute Legend with the nurses.
Robe, lightweight and mid to long length
If your transplant will happen at St Vincent’s Hospital you need to be aware that the wards are very old and outdated.
The bathrooms are shared between 4 patients. There are no benches to store toiletries or clothes, and few hooks to use either. You may find it easier to wear a gown after you shower then change into clothes back in your bed area. Though, when I’ve tried this strategy someone always walks in on me starkers.
Socks
Your feet will get cold from the anti-rejection drugs and may even feel frozen
Clothing
For the first few days you may find it easier to wear a hospital gown rather than your own clothing. I found the gowns became dirty and bloody quickly due to drains and surgery sites.
I packed a second hospital bag with large, loose and comfortable PJs and clothes. When I was able to have a shower and be confident that the bleeding and oozing had stopped, my husband brought in the clothes I had ready in this second bag. I also had a few plastic bags for dirty washing to be sent home.
Basic toiletries
Expect that you will not be having a shower or getting out of bed for a few days. It was day 9 post transplant that I was allowed to finally and blissfully have a shower due to all the drains, catheters, central line, tubing and pacing wires still inserted in my neck, chest, abdomen and urethra.
In the first week I found I only needed:
Toothbrush and toothpaste
Lip balm
Face and Body Moisturiser
Hair comb, brush, scrunches or hair ties,
even a headband depending on your hair type and length. Remember you will not be able to shower for many days after your Heart/lung transplant surgery.
Dry Hair Shampoo,
as you will potentially have unwashed hair for more than a week.
Mirror.
You can not get to the bathroom in the first days / week. When you can use the ward bathroom, if you are more short than tall, you will not be tall enough to see the mirrors in the St Vincent’s Hospital ward bathrooms as they are hung way up high. Male or female it’s nice to check your teeth before visitors arrive with a handheld mirror. I usually take in a mirror with suctions caps so I can stick it up somewhere.
Shampoo and Conditioner,
I packed this in the second bag too for later.
Shower wash,
one with lavender or chamomile or aloe vera is soothing for mind and body.
Shaving foam and razor,
for when you’re feeling up to it.
Entertainment
When it comes to keeping occupied, believe me for the first 7 to 10 days you will not be up for too much at all. When you feel better ask your family to bring items in for you. The last thing you want is expensive tech devices going missing and a lot of clutter around you that you are not able to reach, find or use.
Mobile
In the first few days you may not need or be able to even use your phone. This is why my Husband, Steve updated all our friends through the WhatsApp Chat Group.
Phone and iPod Charger
You have probably spent some time already in hospitals to know that power points are usually on the wall behind the bed. This makes them hard to reach. Consider taking in extra long charging cables or a power board with a 5 to 10 meter lead.
EXTRA CREATURE COMFORTS
The following items may seem excessive but most transplant patients are in hospital on average 3 to 6 weeks post surgery and potentially readmitted. I had these items set aside at home in a secondary hospital bag ready for my hubby to bring in if and when they were needed:
Plush Blanket or dressing gown
as hospital blankets are scratchy particularly after surgery and spending so much time in bed.
Your own pillow
as hospital ones are flat and rubber encased which make you hot and sweaty. They also squeak. Pillows are always in short supply in hospital so good luck getting a second one.
Mattress protector
as the plastic/rubber wrapped hospital mattresses are hot, sticky and sweaty and make you slide down the bed. Not great when you can not use your arms to push yourself back up the bed after surgery.
A tip is to raise the bed’s middle section under your knees as this helps prevent you sliding down the bed in the first place.
Equipment you will need at home
Home Health Monitoring Equipment
When you arrive home you will need health monitoring equipment including a thermometer, blood pressure measuring unit, personal scales.
Wedge Pillow
At home you are less likely to have a bed head that can be raised mechanically. You will not be able to use your arms to get in and out of bed. This becomes more difficult if you are laying flat. A wedge pillow or multiple pillows arrange as a “nest” may help you breath better and be more independent when you want to sit up or get out of bed.
Bell Or Alert button
You may find that you are bed-bound but really need help. It is great to have some way of getting your family or carers attention without having to strain yourself and call/shout out. My family, God bless them bought a pair of exquisite, Spanish Castanets, also known as clackers or palillos.
Plastic Storage Tubs
You will be surprised at the volume of medications you will need to organise and store at home. I talk more about this in Part 1 of 3 posts about medications.
Please see these posts on hospital routines and Part 2 on Anti Rejection Medications and Part 3 on NON Anti Rejection Medications for more information and tips I have learnt along the way.
Reminder
If you leave something at home before the transplant the hospital is able to provide basic essentials if you forget something. You will need very little while you are in ICU, sedated and bed-bound. Family can bring in other items as you need them. Although, all bets are off if we have another COVID lockdown!
If you packed something in your Organ Transplant Go Bag or arranged for items at home to assist you that is not included here please leave a message in the comment form below.
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