Here's Robbi with a neck free of IV's!!!
I talked to Robbi this morning. Maybe a little bit of cabin fever setting in, staying in her room most of the time except for her walks. She said she isn't going to be coming home until Friday this week. They have to tweek her meds, find the proper Prograf level, have started her on blood pressure meds because shes become hypertensive (which happens to most transplant patients), shes starting on the Coumadin pills instead of Heparin IV. Its not a set-back, its just getting it all together before she leaves.
Once she does leave, for the first month she has to have labs done every Tuesday and Thursday, which she can do at the lab near her house. She has to be back at Hopkins for their clinic once a week, either Wednesday afternoon or Friday mornings.
I can't remember the second month but there are still lots of labs and clinic visits. Not until about 6 mos out does it really get a little more sane. But they follow her closely for the first year, and still follow her for the second year. A little different than my experience.
Her in-laws are leaving Saturday so I will be at her house Saturday until her other mother in law arrives about a week later. Mainly to be sure Robbi doesn't try to jump back into her old self, mopping floors and running around taking care of the kids. Hopefully she will be happy to be home and happy to be resting during the day while the girls are at school, and the first weekend at home she will need her rest too.
It feels weird to be home and not at the hospital, but Robbi gives me phone updates. She lost 10 pounds of fluid in 1 day and shes so excited about that. Its really tiring to drag around the extra weight in fluid when you aren't used to it, and you are worn out anyway. So she is loving the Lasix and is happy to get weighed when she is losing the fluid like that! (In the picture you can see that she still has some fluid in her face. In person, I don't even notice it, but it shows up in the picture.
Robbi's Mom
Once she does leave, for the first month she has to have labs done every Tuesday and Thursday, which she can do at the lab near her house. She has to be back at Hopkins for their clinic once a week, either Wednesday afternoon or Friday mornings.
I can't remember the second month but there are still lots of labs and clinic visits. Not until about 6 mos out does it really get a little more sane. But they follow her closely for the first year, and still follow her for the second year. A little different than my experience.
Her in-laws are leaving Saturday so I will be at her house Saturday until her other mother in law arrives about a week later. Mainly to be sure Robbi doesn't try to jump back into her old self, mopping floors and running around taking care of the kids. Hopefully she will be happy to be home and happy to be resting during the day while the girls are at school, and the first weekend at home she will need her rest too.
It feels weird to be home and not at the hospital, but Robbi gives me phone updates. She lost 10 pounds of fluid in 1 day and shes so excited about that. Its really tiring to drag around the extra weight in fluid when you aren't used to it, and you are worn out anyway. So she is loving the Lasix and is happy to get weighed when she is losing the fluid like that! (In the picture you can see that she still has some fluid in her face. In person, I don't even notice it, but it shows up in the picture.
Robbi's Mom
4 comments:
Wow! Great news......yeah....I bet getting all the meds just right is a monster pain in the butt!
Ten pounds in one day....wow....that's amazing!! Just call her Tinkles now, huh?
You are seriously going to have a tough time keeping her still when she gets home....she's felt bad for so long she's going to be itching to do stuff.....you may have to invest in some handcuffs.......you can always use them later for recreational reasons....(if you don't have a pair already....lol)
Great to be able to hear the smile and happiness in you just by what you write.
love and hugs!
Hi, I found your blog through Websleuths. I too have liver disease. I sclerosing choliangitis (sp) I am doing well on meds. They give me a transplant called imuran and other drugs. I am very lucky after 9 years of having this to not need a transplant. I have beaten the odds. I will pray for Robbi. Her story is inspiring. I have to add that seeing her scar made me say OUCH! It makes my cancer scars including the one I will get tomorrow look very small lol.
But Angela after you have a transplant, that is a scar you grow to love cos it symbolizes survival, bravery, pain, and recovery. Robbi can rock that scar in a 2 piece but I can't with mine cos I got a ventral hernia as a result of my surgery (not uncommon) that's just NOT gonna look attractive in a 2 piece, in fact you need a blousy or steel belted radial one piece bathing suit. Her scar is much more "petite" than mine, mine goes all the way around to my back.
If I can suck in my hernia enough I will get a side by side of us and put it up on the blog, otherwise, no way.
Also Angela, although I hope you never have to get a transplant, if you do, that will be your "cure". You will live to a ripe old age.
For Heppers like Robbi and I, a liver transplant only buys you more time. The Hepatitis virus starts attacking the newly transplanted liver as soon as its in and your own blood supply is running through it.
I suppose if you are young when you get your first and need another one 10 years or so down the line, its possible for a 2nd transplant.
I can't even imagine going through that again.
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