Posted 2/23/2014 1:22 PM (GMT -6)
Okay, Meg...You have to pull yourself together, it's not about you. I don't want to sound harsh, but let me tell you a quick story.
I always said I could never do well in an emergency. But one day my mother flat-lined at the kitchen table...you can't get any more dire than that. I quickly, with the help of hubby, eased her to the floor, called 911. Although my CPR certification was like 12 years before, I performed CPR right up until the EMT's arrived. I then proceeded to have my breakdown while they zapped my mom continuallly until they got a heartbeat. She survived.
Just put those gloomy thoughts right out of your head, stop with the pity party. Your focus should be on your son, and in turn, his son. Your grandson can play a huge role in taking care of his dad (assuming that the grandson you live with is your sick son's son). You will likely need all the help you can get. You don't mention your son's age. Also it would help to know what medications he is on.
Do you go to appointments with your son? If so, you need to write a list of questions to ask when you get there. I hope he is seeing a hepatologist, rather than a GP or Gastro doctor. Once you get that biopsy done, you will know much more. If your son doesn't share with you, you need to have a big talk with him and any other people that may assist in his care. The transplant team does not look favorably on a patient who has no caregiver in place to support the listee. Although a couple of people here have had to go it alone, they have had to lie about having a caregiver. The team knows that transplant success depends a lot on a supportive family. And they expect to see caregivers at the classes and at all appointments.
Important things to do while on the TP list:
Stay off alcohol, drugs and tobacco of any kind. He will be thrown off the list if, say, he shows alcohol in his bloodwork, so be careful with ANYTHING that contains alcohol or unprescribed prescription drugs.
Adhere to a low sodium diet, very low. The goal is 1 gram (1000 mg) per day. Fresh fruits, vegetables, chicken, fish are a good start. You would be very surprised how much sodium is in 2 slices of bread! And anything canned is going to have a ton of sodium, same with deli meats usually. No processed foods at all is best and for seasonings many use Mrs Dash and herbs instead. Eating in restaurants is very tricky, as chefs are not nutritionists generally and have no clue what low sodium really means. READ ALL LABELS.
As Mamalama said, start keeping a file of all his test results, labs, appointments kept, etc. So many times you will be referring back to these and you will save a lot of time by doing so. And yes, get started on applying for SS as this is considered a "TERMINAL DISEASE" and you should use that nomenclature I'm told.
Unfortunately, without treatment, your son will become a lot sicker, and need almost 'round the clock care. He should have a living will, Power of Atty papers, etc. in place while he is alert and lucid. Conditions can change rapidly with this disease.
Now the good news, there has never been a more promising and rewarding time in the history of this terrible disease. The new treatment that just came out has huge success rates in trials and beyond. So there is SO MUCH more hope now. My brother, after his transplant, had his hepatitis come raging back. Now he is undetectable!
I have been through all this and I know you can pull yourself together and be the strong mom and grandmom for now, you can have your breakdown later, I promise :)
All the best to you and your family,