Dec 24, 2011

Robbi will be admitted to Hopkins Dec 26 for 4-5 days so they can get the fluid off her. Her ankles, etc are swelling and they would rather take care of it ASAP rather than later so it's not so hard to get off. Last time she walked around with the fluid for way too long.

She has completed some of her pre listing tests and has the rest already scheduled, will probably get some done while she is inpatient, too. Shes almost ready to be listed and hopefully on track for a Jan-Feb transplant. She's crazy-excited about Christmas, just like she's always been since she was a little kid.

Merry Christmas to all!!!!

December 18, 2011

Robbi has been maintaining status quo the past month or so. She is able to keep food down better the past 2 weeks. She has her schedule for days she is to report to Hopkins for the remainder of her testing pre-transplant. Looks like the track for Jan-Feb transplant still remains.

I find her energy level to be AMAZING. She has been able to get out and do some serious Christmas shopping and decorating lately. Of course, always followed by a few days of rest to "recharge". She has attended a church Christmas dinner gathering and is looking forward to going to Hopkins liver transplant Christmas party.

Her family was chosen many months ago to be the recipient of Hopkins "family" to receive Christmas presents and goodies. They are providing her family w/ an entire Christmas dinner, as well as gifts for the whole family. A blessing, to be sure.

The long term effect of Robbi's sickness on her girls has yet to be seen. Her 4 year old was crying at school one day and told the school nurse that "her mommy was sick". Robbi and Mike have not told the girls she needs another transplant yet. All they know is she is sick and needs to rest a lot.

Robbi has continued the Christmas traditions in her family like baking cookies and goodies and is making it as normal of a holiday as possible. I continue to be amazed at her bravery, and ability to get through every day with a positive attitude for her family's sake.

Thank you for all of your prayers and well-wishes and may each of you have a blessed Holiday season.

Friday November 18, 2011

Robbi met with the transplant team regarding her re-listing this week. They are moving forward with the listing process and not making her wait until she has been at zero viral load for 8 weeks as originally planned. She is very motivated and anxious to get all the tests completed as fast as possible. Transplant Team also said she will most likely be transplanted Jan-Feb 2012 rather than before Christmas. They want to get her inpatient and bulk her up as much as possible before transplant. Get some weight back on her.
Robbi's appetite is very good in the evenings but during the day she is very nauseated and does throw up all day long. She is about 115 lbs and is very, very thin. If not for the vomiting she would probably be a healthy weight. She does sleep much of the day away, but she likes to be awake and interactive when the girls get home from school, and she cooks dinner for the family and does as much as she can in the evenings with them. Mike is a great help to her, and allows her to sleep as much as she needs to during the day. They still do family activities and errands together most of the time.
Robbi is extremely excited to start making scrapbook pages for her new album, which she won as a door prize a few weekends ago when her Grandmother, her sister and I attended a Women's Conference. She has been wanting to get started in scrapbooking, a hobby she can do while resting, and while in the hospital, she hopes. She is still collecting supplies and stuff here and there before she starts. She plans to go to a free scrapbooking group 2 x a month at the girl's school.:)
She hasn't lost her sense of humor or her caring and compassionate nature for others as she goes through all of this nightmarish re-transplant process.
Thank You for continuing your prayers for Robbi.

Robbi's Mom

Friday, November 11, 2011

Robbi has been resting a lot lately and weighs 115 lbs (she says- she looks A LOT thinner than that to me) past several weeks, the nausea continues (from the treatment) and she throws up 5-6 times a day. That's why she is so thin- she can't keep anything down. Mike has her drinking Ensure. Her birthday was Wednesday
and she even threw up her birthday cake. :(

The good news is her viral load is NEGATIVE zero, meaning she has cleared the virus. Now they will see if she has a SVR (sustained viral response) and keeps it down to zero (undetectable), then when they transplant her she will have none of the virus in her system and when they transplant her new liver (soon, we hope) she will be able to live a long normal life afterwards with no Hep C anymore. :)She is currently re-listing for her next transplant and we will be doing the "waiting for the phone to ring" through the Holidays.

Please remember Robbi in your prayers and pray she gets a new liver in time before the one she has now 'craps out'.

I will continue to update.

October 12, 2011

Robbi has been in Hopkins again, after just getting out in September, this time for left sided kidney pain. While she is in there they have continued to wean her off the Prograf and started her on the Cellcept. The Teleprivir cannot be given w/ any immunosuppressant other than Cellcept, which is the reason for the change. Generally they do not like to change your immunosuppressant if all is going well with it.
Teleprivir is a new drug just approved by the FDA in March of this year. Its a "booster" drug to be given the first 12 days of Interferon/combo therapy. Robbi is being given it towards the end of her therapy- they said after she has received it for a few days her viral load will be -0-. Hooray!
They are transplanting her again by the end of the year. She is starting her tests to be re-listed next week when she gets out of the hospital. I am sure I listed all those tests somewhere a long ways back when she was just being listed the first time. So much has happened since then! I
so hope she can get a new liver with a -0- viral load, and live a long and happy life. She sure deserves a break after all she has been through. Shes been so brave and strong throughout it all.
Just like my Robbi always is.
Dunno how ready the girls are for this rollercoaster again, I don't even think Mike & Robbi have told them yet. Maybe its best they don't know till it's imminent.
Thank you all for your prayers and good thoughts you send to Robbi and her family.

Robbi's Mom

September 2011

Robbi's first anniversary of her liver transplant came and went (September 16) with her in the hospital. I made fancy cupcakes for her and her nurses. Mike delivered them. Her back has several compression fractures and that's what has been causing her pain this time. She should be back home in a few days.

July 2011

Hi. Heres an update on Robbi, hope I don't leave anything out:

Robbi has been doing very well with her Interferon and ribavirin therapy. Pills everyday plus injection once a week. Leaves her sick for about 2 days afterwards. But her viral load is going down and thats what we want. Treatment is working!

In June Robbi was in hosp for a week (Hopkins) due to her huge abdomen and pain. They started
talking about one thing then changed their minds and then discharged her, having done nothing. Oh well. She feels better now but has a huge abdomen and a really ugly hernia.
Also she had all her hair cut off cos it was falling out (from treatment)., but it looks GREAT short too.

So currently shes enjoying summer w/ her kids, and doing her treatment. She has lost so much weight she looks anorexic. Thanks everybody for keeping her in your thoughts and prayers.
Sept 16 is her 1 year mark. Pics to follow....

Valentines Day is Robbi's first day alone with the girls, getting them off to school, etc since her in-laws are gone. I talked to her about 4pm she was doing fine, was a little tired but otherwise ok. She had a stent removed & new one put in last Friday and was fine after that except for a bad backache which persists.

Please remember her in your prayers.

Robbi's Mom

Update 1-24-2011

Robbi is doing much better the past week. She was finally able to start eating and her GI system problems seem to be over. She is still tired during the day and needs to lay down. She is still not driving yet. Her in laws are still there, thank God, for real.
Thanks for remembering Robbi in your prayers-

Robbi's mom

HOO-RAY!!!!!

ROBBI CAME HOME TODAY!!!!!

Robbi

Robbi in happier days- about a month before her transplant...

UPDATE Sunday 1-17-2011

Robbi definately coming home tomorrow if her labs continue to look good!!!!

Robbi's Mom

Sunday January 16 2010

Poor Robbi still in hospital. Her kidneys haven't started to kick in and make decent urine yet. Shes quite sick of being in there. She told me it was like being in solitary confinement or prison. :( I still got 4-5 months on her I was in June 2001- November 2001. Most of it was in a coma or drugged reeeeeealllly good.)
I haven't been on VH or my other boards due to this fry-gatin' knee. Appreciate you're lookin' out for my little one.

Robbi's Mom

Januay 4 2011

For Robbi, who loves butterflies...

January 4 2011

Robbi is slowly improving, waiting for some of her numbers to come down and some to come up.
Shes sick of the hospital and the 'food' there. She waited 2 weeks to eat!!!
Her sister, husband, me and bruce have been visiting her as often as we can. Its not a cheap trip gas-wise plus you have to pay for parking. About a $50 adventure. Too bad. But thank God shes there and not a local hospital because the lcals hospitals are pretty much clueless.
Please don't stop praying for Robbi.

Robbis Mom