Tuesday night Robbi had to go to her local hospital ER for pain from her gall bladder again. They doped her up with pain meds and she was home Wednesday morning, to go to her scheduled drs appt with her Hopkins dr and also to Hopkins for an MRI that had been previously scheduled. She looked so sick, so she had the MRI at Hopkins, (in fact, when we got there they "expedited" her to get it right away, even tho we were late for the appointment due to traffic, etc. getting there.) Then we drove to the drs office, which is not at Hopkins but another location. The dr visit there was very emotional, the dr said her cancer has not grown, its still 1.5 cm so she still gets no extra MELD point for the cancer. I think this is so ridiculous. Robbi said, how sick is it to have cancer and be hoping it grows so you get an extra point? And shes right. Its a bad mental trip shes going through and very painful to
even look at her, for me as her mother, as it breaks my heart to see her so sick and so depressed, so hopeless. She cried at the drs appointment and he tried to console her but ended up giving her his cell phone number and said next time you have bad pain and feel like going to your local hospital, call me instead day or night and I will arrange to have you admitted to Hopkins.
So we get back home, Robbi goes on back to her house, and later on (last night,Thursday)got liver pain (not gall bladder this time) last night that was the worst pain she has ever had, she had Mike call the dr. on his cell phone at 1am, dr told him to have her go to her local hospital for immediate pain control and also so they could arrange for her to be transported to Hopkins to be admitted via ambulance. She got to Hopkins this morning around 10am or so, got a room, and they changed her pain meds to morphine. She has already been taken down to ultrasound and just got back to her room a little while ago.
The doc said to her, after he gave her his cell number, at the appointment Wednesday, something that kind of shocked me. He said to her she will be transplanted this month. I was so shocked, I said "July?" He said yes, there's 3 weeks left in the month. I thought that's a pretty bold statement to make, how does he know if a liver suitable for Robbi is coming available in the next 3 weeks? What if it doesn't happen, if it doesn't happen after he has said this to her she will never trust anything he says to her again. I hope he wasn't just "bullshitting" to make her feel better, as he told her this after she had broken down in tears and said she was feeling so hopeless and depressed. These are normal feeling when you have been waiting 16 months on a transplant list, and you have chronic problems,pain, feel like crap, and are having more and more frequent hospitalizations. Even someone who "has been there" telling you that these feelings are normal, really doesn't help that much. The important thing is to keep her spirits up and let her know not to give up hope, this is part of the process, and it too will pass.
My fervent wish is that they decide to keep her in the hospital until a liver becomes available for her. That's what they did to me, but I was way sicker. I don't want my Robbi to get nearly as sick as I was before she is transplanted because frankly it was a miracle I made it at all. I pray the system works like its supposed to and a liver becomes available for her before she gets any sicker. Mike got his sister in Pa. to take the girls for however long is necessary, and Raven has Jessie the dog. Mikes on is way to Hopkins to stay with her for as long as he needs to. If it gets very bad/ serious/ critical or if it looks like a transplant is going to be happening, I will be down there too.
We are all praying that "this is it". All we have is hope, nobody has said to us, "this could be it".
PLEASE remember Robbi in your thoughts and prayers. Thank you to all her wonderful girlfriends who check on her and encourage her and keep her spirits up. You know who you are!!!
I will update this blog with any new information, I promise.