Still Waiting

Well 2009 is almost over and Robbi is still anxiously awaiting her call from Hopkins.
Shes very very tired all the time and is sneaking naps in whenever possible. I remember sleeping all day and all night when I was towards the end. I don't know how Robbi does it with 2 kids underfoot but she does. I now Mike and my brother help her out too.
We wish nobody ill will but if anybody is drinking and driving in Region 2 this New Years Eve, I hope they are organ donors and are blood type A+. Its a sad fact of life that drinking holidays produce organ donors....
Peace and Good Health to all our friends and family in 2010. 2009 was sure a sucky year for our family.

Robbi's Holiday party given by Hopkins was nice. I think I heard there were several hundred people there. I forgot my camera as usual. Robbi looked great. Her team said she is going to do great because she is in such good physical condition. We got to see the Hopkins Transplant Quilt which is always a work in progress. Robbi still feels ok, very tired all the time though.

Still waiting.....

Still waiting, Robbis feeling kind of middle-of-the-road. We are going to go to her donor family/ recipient/ waiting list holiday party at Hopkins. That should be fun.
Everyone is packed and ready to go, just waiting for a liver to come.....

HOORAY, Moving right along....

Robbi is officially "next up" for the next liver so she could get the call to report to Hopkins for her transplant *anytime*. I am thinking the next 7 days, Hopkins pops out transplsnts like a well oiled machine, apparently. They did 2 in 3 days last week.

Keeps those prayers going, we are almost there, and thanks to all.

molly

my daughters... madi

Finally some news....Robbis MELD is over 18, after her bloodwork she had done at last weeks dr appt @ Hopkins. She got the news yesterday that she is in the top 7 for transplant, I think she said 2 very sick ppl ahead of her that are blood type A...the doctor said he anticipates she could be called for a new liver in 3 weeks or 3 months, but he expects a "holiday transplant".
I am sick/excited, if that makes sense. Thank you everybody for your continued prayers.

Robbi's Mom

New News

Finally some good- but scarey- news. Robbi's appt @ Hopkins was yesterday. Her dr said shes now an 18 (MELD score) and that she will "probably" go (for a liver) over the holidays. Which makes us all happy but scares the heck out of us too.
we are still absorbing the news, more later.

abbie

Facebook | My Photos - Beach TRIP 09

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No news is good news, I suppose. Her MELD last week was 16 but that won't move her down on the list. She is always tired but who wouldn't be with all she does all day? She finally quit her job at the gym, I am glad even though she wasn't doing anything strenuous there. She has enough to do at home. I still haven't gotten her to sit down with me and try to pull up these great pics....thanks Summer for all your good wishes. Next Hopkins appointment is November.

Robbi's Mom

September Already

I apologize for being so slow in updates, but no news is good news! Robbi and her family (hubby & kids) had a great summer, went on 2 vacations, one to beach plus a couple of weekend camping trips. Robbi looks great, sometimes her ankles get a little swollen and she has had ascites off and on, they gave her Lasix for that. Itching is not so bad, she may be yellow but who can tell, she has the most awesome tan. Haha. Her doc says she has about 8 months left before her transplant is 'emergent', but you never know what complication is going to crop up to move you up the list. She's still a 17.
Let me see if I can add some pics, have been having trouble with that.

Robbi's Mom

ok, can't get the pics I want to here, need to get Robbi to help me....they're really good ones, too.

July 4th, 2009

The two little girls are Robbis, and the little boy is my oldest daughters youngest son.
Thats my hubbys belly in the background. Haha.

June 21, 2009

So many people have asked me how come I haven't put anything on the blog for so long, I decided I better just write a quick note.
Robbi is feeling good. Her next appointment at Hopkins is July 8. She said she still has the persistent itching, and slow clotting when she bleeds, but her swelling problems have gone away for now. We will know more about where she's "at" after her July 8 Dr. visit.
Thank You for your concern, interest, love and prayers for Robbi.

Robbi's Mom

So. I think Robbi is really getting into the blog, she even checked out our Doomsday forum but is too shy to post, I told her don't be skeered, these are all good friends. But I got her reading a TC forum, so I may convert her, yet! Just as a hobby. Like the mother of a second grader, a 1 year old, a relative that lives in her basement, plus one of those husbands, needs a hobby. Oh, and she works. Oh, and she goes to the gym.

I spent the night at her house last night and she looks really good, eyes no yellow at all, she is tan but no jaundice. And I am sure that she would want it to be known that her BELLY IS FLAT.

Robbis Mom

Thursday June 11 2009 Update

Robbis MELD is still 17 right now, but she is starting to have the problems with itching. She has gone through this once before when she was 16 weeks pregnant with Molly and had liver failure. She was scratching so much she was bloody. I know it might be hard to understand, but Heppers get this itch eventually, and it drives you crazy. First, its here there and everywhere. It seems to be worse at night, and I remember taking a hairbrush to bed with me to scratch scratch scratch.
And the weird thing is, no matter how you scratch, it still itches, which is why people scratch like crazy...I recently heard someone suggest you scratch ANY itch (not just the Hep itch) with an ice cube, the cold numbs it and you aren't tearing yourself up. Now they tell us!!!!! They do have some medications specifically for this hep itch, but trust me, it doesn't work very well, doesn't work everytime, and it must be drank after mixing it with water or juice and its sooooooo nasty. Like drinking orange tang-flavored cement.
The itching is just another step towards transplant, the liver breaks down like an old Ford truck, slowly, sometimes fixable, tricky, etc. It puts Robbi one symptom ahead towards transplant. She really has my sympathy with the itching, its like your elbow and your other knee itch all of a sudden, then it's a spot on your neck, then it's your calf, then it's the bottom of your right foot while you are wearing sneekers and socks and driving a car. Thanks for the support of all our friends, and family.

Robbi's Mom
PS The beautiful clematis...I had to share this picture because nobody got to see it in its short 48 hours under my care in the yard. I don't know why. I planted it (from Home Depot) and 2 days later, dead. Might try another one.

Tuesday June 9, 2009

Nothing is really "new" with Robbi. She continues to look so much better, no jaundice, no ascites, no edema. We know this is a smalll repreive and her liver will eventually start causing avoc on her health and not relent until its out and she has a new one. Robbi is enjoying her summer with the girls (her daughters) for now.
Thanks for everyone's prayers and well-wishes.

Saturday, May 23, 2009

Robbi's MELD is still at 17, she has new orders from her Hopkins doc to get an MRI w/ IV Contrast of her abdomen/liver the first part of July. She will have labs again in about 2 weeks. She is having success with the meds to help her get rid of the extra fluids, so she is glad to see her weight in general go down. I think she looks too skinny, but that's just a mamma talkin'. She has a busy Memorial Day weekend planned, Mikes Birthday is Sunday, and Molly's 2nd Birthday is Tuesday so the Memorial Day cook-out is going to be at Robbi and Mikes, with all of us bringing something. This pic is from our last Friday Girls Night, Robbi Raven and I had chineese food then dipped strawberries, apples, and stuff into melted chocolate. Ummm.
Robbi's Mom

Saturday, May 16, 2009

MELD for last week: 16

From our good friend, Summer.

Friday, May 15, 2009

Hello friends, family, and followers. Not too much is changed with Robbi, she continues to have her regular days at home with the kids, getting her labs done. Her last MELD was 17, last week. We are still waiting to see what this weeks labs are. Since last week she has been started on Lasix and Spironolactone, due to edema (fluid) in her ankles and I think it helps a little w/ the ascites initially, too. Shes taking it a day at a time, she's a strong girl. She stays in close communication with her Transplant Co-Ordinator, who really does become the most important person to you when you are listed for transplant. It's very comforting knowing there are great doctors, nurses, surgeons, and all the others that work as a team for their patients.

Robbi's Mom
MELD- 17, still, as far as we know.....

Wednesday May 6, 2009
Robbi is about the same. Her next regular appointment is in JUNE so that's encouraging. You know when you are 9 mos pregnant and all you want is to HAVE THAT BABY ALREADY! and have it be over, so you can start your life with your new baby- well, its kind of like that when you are waiting for a transplant. "Please let it happen as soon as possible, and lets get it over with, so I can get on the other side of this with my new liver, and get my life back".
So its just a day at a time for her
.Thank you all for keeping her in your thoughts and prayers.


Robbis Mom

Robbi in front of one of the many entrances of Hopkins

Sunday May 3, 2009

Last week on Wednesday was the Orientation and Tuor for the people who are newly listed for liver transplants at Hopkins.

We both learned a lot and they fed us a nice healthy lunch. They gave us lots of new reading material, and then we toured Nelson 7, which is the floor the liver transplants go to

after they get out of SICU. We met lots of really nice poeople who are sick and waiting, and sick of waiting, just like Robbi.

This picture was taken at a statue of Christ they have in the original part of Hopkins, I had to sit on the floor to take it, its absolutely huge.

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

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 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

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

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.

UNOS: What it is and How it Works

http://unos.org/

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

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:
http://www.janis7hepc.com/transplants5.htm#How%20to%20Calculate%20MELD%20score

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

Mike, Madison, Robbi and Molly

Madisons Ballet Recital last year in May

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

And I forgot to say her MELD score was 17 today.

4-6-09
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

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!