Well, this is a first for me. I wanted to create a blog so that Robbi's family and friends can log on and see how shes doing, and I will update it every couple days till we get closer to transplant, then more often, I hope.
So this first blog will be a little long, but I don't anticipate being wordy in future ones.
As some of you know, Robbi was born with Hepatitis C, She was been pretty asymptomatic (without symptoms) while growing up, but the first sign that her liver was sick was when she was 16 weeks pregnant with Molly. She was admitted to Johns Hopkins in Liver Failure, and there was talk from her docs about having to do a therapeutic abortion. Robbi & Mike had just learned the sex of the baby that morning at their ob/gyn appointment at home. So it was a very sad day.,
But, Molly is as hard headed as her mom, and in a few days with some treatment, Robbi improved and Molly's place was secure for another 22 weeks or so.
We also learned that Robbi has Thrombocytopenia on top of bad clotting factors from her liver ,so she had to deliver Molly (a little premature)at Hopkins because they were afraid of her losing too much blood. She brought Molly home looking a little more tired than she should have been, and recovered slowly and used the gym to help get rid of those extra pounds.
A couple months ago, Robbi went to the emergency room with severe abdominal pain. After a three-stooges like approach to the problem by a Gastroenterologist, a GI Surgeon, and her regular Hospitalist doc, and being told her gall bladder was HOT nad had to come out RIGHT AWAY, the end story was yes, her gall bladder should come out but its not emergent and if it needs to come out, Johns Hopkins will be doing it. Robbi's local hospital, which is right down the street from where she lives, is a real nightmare we have found out. There will be no more ER visits to that place!!
During that hospitalization we found out Robbi has developed esophageal varices, which can be a life-threatening condition. In fact, poor Robbi had a few diagnosis during that hospital stay that were all life-threatening.
She made it out in one piece and while still having her gall bladder, and was told she was to get a hepatologist and get to Hopkins as soon as possible to start the process of listing for a liver transplant.
Anyone who knows this family well knows that hearing those words were very upsetting to me, having gone through this same journey eight years ago. Her husband is very worried and the kids are not really aware that "mommy is sick". Robbis sister and sister in law are available for emergency child care, which will be needed sooner or later.
Anyway, heres whats up for next week.
We have already had out initial visit to Hopkins last week, met two transplant doctors and was set up to come back to do her pre transplant listing testing.
On Monday March 6 at Hopkins she will be having her 3D CAT scan, Labwork and EKG, Consult with the transplant surgeon, consult with Social Worker, then a chest xray. Then we go back to Frederick, and the next day back to Hopkins at the crack of dawn for Pulmonary Function Tests, 2D Echogram of liver, Bone Density Test, -LUNCH BREAK-, Psych evaluation, and finally meet with the finance department.
There are sever other tests that Robbi needs to have done but they can be done locally and don't need to be done by Hopkins. Colonoscopy and EGD and PAP smear and mammogram, oral exam to rule out any abscessed teeth, etc. By the time she is done, they will know her inside out.
Then will come the wait for the liver.
The new allocation system is called MELD, its a system used by United Network for Organ Sharing (UNOS) which is the governing body that decides organ allocations based on a persons MELD score. Anything over 15 is bad, means you are needing s transplant in your immediate future, The number is determined by using the patients Serum Bilirubin, INR, and Serum Creatinine. Robbi's number last week wehn we were there was 16. They said they like to transplant at about 20-25 MELD score.
So that's about all we know right now. Please be sure to let Robbi know you are thinking of her. I can tell you from experience that thoughts of panic, overwhelmingness, exhaustion, defeat, death, and uncertain future go through someones head when they are waiting for that call for transplant. Please send her cards and letters and leave comments on this blog for her, to let her know we love her and are here for her.
PS Please leave comments for Robbi!