Monday, April 27, 2009

Monday April 27 2009

Not much going on past few days with Robbi, except her ascites fluid build up in abdomen which will cause the body to resemble pregnancy- ( not octo-mom big!!!!) But bigger than Robbi wants to be, since she has been working hard since Molly was born to get back in shape, and was looking very *buff* before she started to get sick weeks ago. :(. Her transplant surgeon told her she must quit working immediately , last week. Another :(. As of today, she is enjoying the warmer weather, trying to "keep cooled off" (it went from chilly to sweltering here in 1-2 days!!) and doing what she does everyday- carpooling 5-6 kids to and from school every day, and keeping up with Molly all day.
Thank you to friends, family & followers of Robbis blog for the well-wishes. Your comments make Robbi :)smile.
(MELD score remains unchanged)
Robbis Mom

Tuesday, April 21, 2009

Tuesday April 21, 2009

Friday Robbi was feeling bad so she called her transplant doc @ Hopkins and he said he wanted to see her Monday morning. So we made the trip to Baltimore in the pouring rain yesterday.
He said her liver is "going downhill fast" and give or take she has 6 mos to 1 year before she will need to be transplanted. They did bloodwork and we started on the trip back home. Before we got anywhere near home, Robbi was nauseated and looked terrible. When we got back, she had to lay down, had chills and couldn't get warm, and had a fever.
Mike ended up having to take her to her local hosp emergency room. They scanned her, did labs, etc and gave her some morphine and something to bring her fever down, and some antibiotics for urinary tract infection, and contacted JHH who said she did not need to be transported down there.
So today her hubby is staying home from work to take care of her, and she still feels pretty bad. Hopefully its just a bug she picked up and she will be feeling better soon.
Her next regular scheduled appointment is June. We won't know her updated MELD score till later today, from when they drew the labs yesterday at Hopkins. Her last one was 17.
Thanks for all your well wishes for Robbi.

Robbi's Mom

Saturday, April 18, 2009

Saturday April 17 2009

Robbi was having a few symptomatic things going on yesterday, spontaneous nosebleed she couldn't get under control, a couple other things I don't think she would appreciate me putting on the blog, so she called her hepatologist @ Hopkins and he wants to see her Monday morning at 10:30am. He said he will get blood work done then too. Maybe we will get a new MELD score. Please keep her in your thoughts this weekend.

Robbi's Mom

Friday, April 17, 2009

A really quick note to let you know Robbi is doing ok. Shes still a yellow-ish color, something I didn't really realize till lately because its been coming on so slowly. Whites of her eyes are still white, though. Shes starting to have problems with ascites. And the itching has gotten a little bit better but not much. Her spirits continue to be good (as it relates to this issue) but still NO LETTER YET! Its Friday!!!!

Robbi's Mom

Monday, April 13, 2009

Waiting on the Mail Bunny, Not EasterBunny

Hope you all had a nice Easter. The whole family ate Easter dinner at Robbi's, with the kids and grandkids, and Mom & Rich. My girls are very good cooks!
This week is the one we are expecting the letter from Hopkins regarding the waiting list. Pins and needles, man!
Robbi got a letter last Friday from Hopkins, on the 29th this month they are having an all day seminar for pre and post transplant patients, her surgeon is going to give a talk about how the surgery goes, and a few other speakers, then lunch, then a tour of their transplant unit.
That should be interesting.

Saturday, April 11, 2009

UNOS: What it is and How it Works

Here is a wonderful website for UNOS explaining organ allocation and how their organization operates.

Thursday, April 9, 2009

How they calculate the MELD scores

The MELD score is what determines who gets the next organ. Its an allocation system I am just learning too, as the year of my transplant was the last year before they initiated the MELD system. Anyway, heres a link to how they do it and why:

THURSDAY April 9 2009

Today is the day the Medical Committee meets to discuss Robbis case and decide if shes a candidate for the transplant list. Please keep her in your thoughts today. We will get a letter next week to let us know what their decision is. Nail-biting and pencil-chewing time.

Robbis Mom

Tuesday, April 7, 2009

Robbis second day of testing at Hopkins is finally over. She met with psychiatrist, financial counselor, and had a Ct scan, and sono, and did her pulmonary tests. No icky needle, either!!!
Thank God. Ask anybody who has ever had Arterial Blood Gasses drawn. But they didn't need to do them, so at the end of the day they said the medical committee meets this Thursday and they make the decisions who goes on the list or not and she will most probably be listed, and her wait will be anywhere they estimate from a couple months to a year. She said one person got their transplant six days after they got put on the list.
It was all good news to hear and she is young and healthy so they said she will do fine. We left there feeling really good about this.
Now we wait for the letter! :)

Robbi's Mom

Monday, April 6, 2009

And I forgot to say her MELD score was 17 today.
Today was a very uplifting day, if you can call it that. Robbi, Mike and I arrived at Johns Hopkins and she immediately had her 3D cat scan of her liver, labs (18 tubes!), Surgical consult- met her surgeon and he is wonderful, and we all feet much more comfortable once we met him. She also met her Social worker and her Transplant CoOrdinator, and had a chest xray. The surgeon said he estimates- his best guess because we kind of forced him to tell us- that Robbi has a few months to a year before she will need to be transplanted. She will have a few episodes where she gets worse, and hopefully they are few, and hopefully all the planets will align and she will get her new liver.
Tomorrow she starts off her day at Hopkins with Pulmonary Function Test, a 2d echo, bone denisty scan, Psych consultation and Financial Consultation.
They are very organized at Hopkins and as big and diverse as the hospital is, you don't feel like "you are a number". All of the people who work there are so nice- even to each other!! (Our last experience in another hospital was quite the opposite.) The 2 hour drive down is a drag but hey, could be worse. We wre going to check out taking the metro from Shady Grove or something and see how that goes.
Thank you for taking the time to read about Robbi and offer her encouragement. She is fortunate to have sych wonderful friends and family.

Robbis Mom

April 6 2009

Saturday, April 4, 2009

March 2009

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.

Robbi's Mom

PS Please leave comments for Robbi!