Advice

Get help

  • You are going to need a support system and the sooner you wrap your head around this, the better you’re going to be.

  • For Raylynn and myself, everything happened so fast. Literally 37 days from the first time we heard the word cirrhosis to Raylynn going in for her surgery. MOST people have months and even years to prepare, which present their own challenges, but for us it happened super fast and yet while we were going through it, it seemed like everything was so unreal….like how is this really happening?

  • You will need help. The biggest thing is taking everything one step at a time. For me, I was working full time and going to the hospital everyday for a month before I took time off work to be fully engaged with the serious matter at hand.

  • You will need help sorting through paperwork, you will need help preparing the home after surgery, you will need emotional help because this is going to take a HUGE emotional toll on the caregiver and you as the caregiver need to gird your loins or another way of putting it is, you need to put your big girl britches on, because you are in for one hell of a long ride.

  • As the caregiver, you will have to handle a lot of different things all at the same time, you will become a better multitasker.

  • First thing first. If the liver recipient works, ensure you proactively work with them to get approved for short term disability and FMLA.

  • FMLA typically covers up to 12 weeks.

  • In Raylynn’s situation, after the 12 week FMLA expired, her employer terminated her employment. It’s so difficult dealing with the emotional roller coaster of life or death and then deal with being terminated. Even though it wasn’t me being terminated and I logically understand why the employers decision, it hurt. Be prepared.

  • Lean on HR to help you fill out the paperwork correctly. Understand that HR role is to protect the company, not you as the employee, but most HR people will help as much as they’re able to.

  • If organizing paperwork isn’t your strength, identify that person in your family that is super organized and ask for their help.

Blood draws (aka phlebotomist, aka vampires)

  • Drink lots of water the night before

  • Relax, one bad stick doesn’t mean all future sticks will be bad

  • If you know, you’re a hard stick, ask for a heating pad

  • Build relationships with the people who draw your blood, ask them what their favorite soda is and bring them one the next time you go in.

Electric blankets

  • Most of the time electric blankets are not allowed and for good reason and probably for liability reasons as well. Liver recipients often have very thin skin, and because of how sick they are and the amount of medication they’re on, they often are mentally and physically incoherent.

  • There are some electric blankets that get too hot and don’t auto shut off which can cause severe bodily damage. I personally know of a person that had their arm removed because they laid on a heating pad in an unconscious state for 3 days and it burned their skin and muscle to the bone, so know the risks.

  • However, I got one for Raylynn and I swear it saved her life. Work with your doctors and nurses to ensure the safety of the liver recipient.

    As a side note, hospitals often have water heated pads.

  • The electric blanket I got for Raylynn was from Costco and you can find them on sale at around $23 dollars, which is extremely reasonable.

You are being watched

  • Everything you do is being watched.

  • How the family interacts.

  • How the family treats the liver recipient

  • EVERYTHING.

  • Are you helping or are you leaving everything to the doctors, nurses, technicians, housekeeping, etc

  • When it comes down to it, this is a life or death decision and sometimes that decision is between 2 or more potential recipients. The doctors want to give the opportunity to the person that has the greatest opportunity for success. Success is relative and defined in different ways, but I would say success equals the person that has the best chance of living a healthy and productive life. The support (family) is being reviewed as well. Does the recipient have a support system after they go home? If they don’t, they probably wont’ be approved for a transplant.

  • If you are hands off and leaving the “cleaning” to the nurses and technicians the recipient will be in filth, not because they don’t want to help (who wants to clean up explosive diarrhea), but because they are divided between several patients. Roll up your sleeves and help. Strangely Raylynn’s explosive diarrhea didn’t smell, don’t get me wrong, I didn’t want to clean it up, but someone had to do it, and that person was me. The point is you are being watched.

  • Ask the doctors “what can I do to make your life easier in treating Raylynn?” When I started asking this question, I became part of the team. The one answer from a doctor that probably saved Raylynn’s live was “contact the insurance company and have them send over the approval for the liver transplant”, so I did. In this whole process, I tell you that there are miracles upon miracles that happened and this was one of those miracles. This statement was made to me on Dec.21.2023 (Thu) or Dec.22.2023 (Fri). The reason this is important is we were heading into the weekend, and the chances of the insurance company approving this type of request going into the long Christmas weekend were slim to none, so it had to be approved before the long weekend. If we didn’t get that approval letter, she would probably be dead now. So I called the insurance company and the first person I spoke to, said they would get that sent over right now. WHAT just happened? Another miracle. I was elated and ran to tell anyone that would listen. The next few days are fuzzy to say the least, but the doctors work on the weekend and were able to get Raylynn on the transplant list in the next 2 days. Shortly afterwards she was made an offer on a liver and things started to go really fast at that point. Her surgery was on Dec.27.2023 in the early hours of about 4:30am. The night before was the calm before the operation. She only wanted me to be there, which was really hard on her mom, but this request was respected. We talked a lot, tried to get some sleep, but it was elusive and she told me everything she wanted to happen if she died. If I had to do it all over again, I would have recorded those conversations.