Some are written for the transplant candidate, some for the primary care giver. Some are obvious, some not so. All should be read to gain perspective. Some will cost a little money, but considering the 'adventure' you are about to begin, the cost is almost irrelevant. All are time savers, stress reducers, or helpful tips to maintain the health of the transplant candidate and primary care giver.
NOTE: I was just rereading this as I loaded it. Some of this may sound paranoid, but remember after surgery the transplant recipient's immune system will be suppressed. You can not take a chance on any type of illness. Food borne disease is the most common form of illness. I used to teach food service sanitation for licensing to comply with heath dept regulations. This gave me an edge preparing for this. Before surgery is equally important. The candidate must be in top form to withstand the rigors of the surgery.
Get a cell phone. You will be spending a lot of time away from home. I got so much accomplished in the car back & forth to the hospital. Some companies offer discounts, explain your circumstances
Get a pager. I linked my cell phone to my pager. If someone called me and the phone was turned off, they could leave a message and when they hung up the system would page me. A great time saver! This also allowed me to screen calls based on priority. I really got it in case a liver came up and the hospital was trying to reach me. As it turned out, I was home getting ready for bed when the call came in. But I still find this system useful.
Get voice mail put on your home line. You can access it even if your not home. It only cost us $7 a month. If not available in your area, get an answering machine that you can access remotely. Leave a message instructing callers to contact you at your cell/pager number for emergencies.
Give everyone ALL your phone numbers.
Get as much credit as you can. Raise the limits on your credit cards. If you get offers for new ones, take them. No one can predict what lies ahead for you, and you don't want to be caught short if you need it Example: What if you have to rent a hospital bed and they won't bill your insurance? You can get it back eventually, but with a charge card you can avoid a 'cash crunch'.
Always have something to read with you.
If you have a relative who is home most of the time, make arrangements for them to act as a 'communications center' for you. Give them a list of people to call when an organ is found, or an emergency, or ??? One call does it all!
I cut my hair and beard short (almost off) when Dad got bad. It saved time every day. If your hair is long enough, start to tie it back. You'll find every minute you can save will be needed.
Nap whenever you can.
Stay busy! To much time on your hands is not good, you worry to much. Worry is counterproductive. It's vital that you as primary care giver are in optimum condition.
Keep a hospital bag packed for both of you at all times. Put it near the door you leave the house by.
Take time for yourself! Someone else can help relieve you for a few hours every week. Go to a movie, have lunch with a friend, go to the library, do something for you every week. Your mental condition is just as important as the transplant candidates. The daily stress can eat you alive. Take a mini vacation every week and invest a few hours in mental recovery.
Use a paper towel to flush public toilets, turn on and off faucets, grab the doorknob to leave. You cannot afford to get sick! The transplant recipients immune system will be suppressed after surgery. To this day I still do this, and guess what? I seldom get a cold anymore.
Close the toilet lid before flushing. Studies show a standard flush toilet sends a 'mist' of micro droplets as far a six feet away.
If you hand wash dishes, allow them to sit a few minutes in a rinse water sink of hot water with a splash of bleach. This is the cheapest way for restaurants to comply with health dept. regulations and kills most organisms that cause food borne illness. Check with your local health department for more information.
If you use a dish washer, turn up the hot water as hot as possible. Throw some bleach in the rinse cycle (check with the manufacturer first).
Don't camp out at the hospital if there is no immediate danger. On the day of surgery, ask if there is waiting area you can lay down in. Our transplant coordinator tried to steer us to an on campus student housing apartment with many beds. At first we refused, but after a few hours changed our minds. We went and I collapsed, total wiped out.
Put paper towels and Dixie cups in the bathroom(s). Make it clear to all visitors they are to wash their hands when they enter your home. No risks / germs allowed!
Buy lots of micro wavable frozen meals. Some are quite good. Portions come in many sizes now. If you check the nutritional info labels you can find something to suit almost any special diet. It takes some research. I spent a lot of time looking at labels in the supermarket before I found what we needed, but it was a wise investment. In the long run, this saved a lot of time.
If you have a pet, what arrangements have you made? My best friend had a key to the house. When we where at the hospital during Dad's surgery, Paul took the dog for a walk after work, then joined us waiting. The first month Dad was home, the dog was in the kennel, with once a week overnight visits. Talk to your Dr. about health care precautions and your pet. You may have to temporarily relocate yours.
Buy disposable plates, utensils, and cups. They come in a variety of shapes and sizes. I bought bulk quantities. By using single use, disposabls there is less chance of the transplant recipient contracting a food borne illness. Keep them in the original wrapping or a covered container until used. Even before surgery, it is vital that the transplant candidate (and you!) remain in the best of health. Don't take chances! (And I don't want to hear about the environment, depending on where you live, I can give you facts and figures arguing both sides of this issue - besides this is a medical necessity - seriously). It's also a great time/stress saver (which is important also!)
Tell EVERYONE that your waiting on a transplant. You would be amazed at the positive response you'll get.
Take help when offered. This is not the time for foolish pride.
If needed, put your foot down! The candidate may be sick, and allowances can be made, but control will shift to the primary care giver. Be prepared for this. If the candidate's behavior, habits, or attitude are detrimental to their health, take charge. It's tough, but sometimes it has to be done.
Have a living will, power of attorney (legal & medical), and any other documents taken care of NOW! Put copies in a safe place. Give a copy to your Dr., a friend, anyone named on the documents, and ALWAYS take copies to the hospital with you. Make sure they are put in your chart along with emergency phone numbers.
Have reliable transportation. Develop alternate routes and plans for getting to the hospital. When Dad went on the waiting list, I realized that even though reliable, my car was 8 years old & Dad's was 9. I traded mine in for a lease on a new '96 Ford Ranger. An unexpected benefit was the height was just right for Dad to step into without stooping down or reaching up. And sure enough, Dad's car dropped it's trans 3 days after his surgery.
Who else can drive if something happens? Who can leave work? Get up in the middle of the night?
Make a list of questions to ask when you visit the doctor. Keep it in the same place always.
Make a list of phone numbers and post it by a designated central phone. We used the kitchen. Keep a copy of the list with you at all times. I tucked mine into the case of my cell phone.
Have a small 'hospital wallet' with copies of insurance cards, prescriptions, and phone numbers. A small calendar book with pockets works, so does a child's wallet.
Get telephones with big numbers. Put them by all beds. We live in a split level and also had one for each floor. Get one you can preprogram emergency numbers into including your cell /pager number.
Contact your local fire department or whoever supplies emergency medical services (ambulances) in your area. Explain your situation. Find out where they are required to take you in an emergency. Dad's nearest Dr. was at a hospital a few miles further away than the one designated. We had to sign a waver to have them take him there (if needed - luckily it wasn't). The fire department "flagged" our address in the computer. They also had us post large signs on all the entrances to the house and inside the house with Dad's medical condition, location of his prescriptions, and emergency phone numbers. I put them on his bedroom door, on the stairs, right inside as you come in the front door, over the kitchen table, and in the family room by Dad's chair. Red posterboard cut in half with a white printed information sheet worked good.
Keep a shopping list. I've never used one, but I was to tired to think when I shopped.
Is your employer ready for you to miss work? Can your coworkers cover for you? Is anyone going on vacation?
Get a maid / cleaning service to come in weekly. They will catch the things you'll miss. Explain your circumstances. Often discounts are available.
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