Cirrhosis Support Group

I thought I'd put this question out to all of you guys. Jaundice has recently been setting in more and more, along with climbing bilirubin levels. My skin is noticeably yellow, and my eyes are a striking shade of orange/red. Pee is the color of honey. At my spouse's insistence I went in for blood work, and sure enough, my bilirubin has almost doubled from 5.7 to 10.1. That would be comforting from a MELD point of view if it resulted in a significantly higher score. But my Creatinine stubbornly remains in the normal range, and so does my INR. The elevated bili only raised my MELD from 15 to 17. Since my Creatinine value doesn't accurately reflect the condition of my kidneys, and may very well stay the same, I may have to rely on bilirubin to get the score high enough to qualify for a deceased liver. My INR has never been above 1.2, and Creatinine hasn't been higher than 0.8 (back in 2007). So, assuming my docs are correct and those values remain the same - my bili would have to reach 50 (which is the highest number the UNOS calculator will accept). That would put my MELD at only 25, which is still not enough to put me in the running. At any rate, my question is, how sick will I get if I reach an insanely high bili level? Of course there's the itching, orange skin, ascites etc. Already got all of that. But how much sicker? Have any of you guys had experiences with the symptoms that result from a value this high? As always, thanks for your input.

Maji,

I can relate to your frustration with your creatinine. Mine has always been between .5 and .9 despite the fact that I get recurring UTi's and kidney stones.

My INR fluctuates between 1.2 and 1.9.

My Bilirubin is usually between 3.5 and 6. The one time it rose out of that range was when I had a bad UTI infection and it went up to 8.1. It went back down after I was on intravenous antibiotics for 2 weeks.

My Meld fluctuates between 13-16. My doctors have told me I need to at least a 20 to be close to transplant. My blood type is b neg and I live outside Chicago.

Have you had a tips procedure yet? I had it in February and feel a lot better than I did last Fall.

Susie

My turn, my numbers stayed stubbornly consistent for the longest time, although my creatine and INR were both somewhat higher than yours. My MELD was in the mid teens. Then, last November, about, my bilirubin started to climb. Jaundice became even more apparent, more fatigued, more HE, more itching. My bili hit about 15 last December and shortly thereafter it all broke loose. From what I understand now, my kidneys also started to fail, causing higher creatine... I began to be able to tell how my bilirubin was doing just from how much the itching was driving me crazy.

I'm hoping your bilirubin gets stabalized, but make sure everyone is ready. From our experience, if things get bad enough for a trip to the ER, bypass the local hospital and go to the transplant center ER, it could save a lot of hassle in the long run.

Sending prayers your way.

Maji

I would contact your transplant center and talk to them about your symptoms, not just your numbers. From what I have read the requirements seem to vary from center to center. Get a second opinion and see them directly.

You are in my prayers

Bonnie

Hi Guys - I forgot to subscribe to the topic when I posted the question at the top of this thread and, as a result, didn't realize I had replies. I've also had some health issues that have kept me away from the laptop. Thank you all for your input. Regarding tips procedure, my doc says "creation of tips has the potential to worsen preexisting hepatic encephalopathy" (which I've got) "and exacerbate liver dysfunction in patients with severe underlying liver failure". I'm quoting here from a paper he wrote on the subject. Oh, and the local hospital (seven blocks due East of my home) is the transplant center, and I go there at least once a week for appointments and blood draws. I don't have to worry about letting the transplant team know, because they get those results in about 45 minutes. As a matter of fact, a couple of weeks ago, my bili took a huge jump, and they called me before I got a chance to go online to look at the results. They admitted me the same day to check for any infection that might be to blame. But, there was no infection. Just the nature of the beast. I ask for feedback in here when I'm in between appointments and unwilling to pester the PA's any further than I already do. And because I know a lot of you guys have been there, done that and will have more candid answers than I'd expect elsewhere. And 'cause I just gotta know, like now.

So, NEW question. Bili went to 13.3 and INR is now at 1.8, earning me a MELD score of 23. (BTW, PT is at 22, and platelets are at 132) This is obviously encouraging from a rung on the ladder standpoint, but now I'm a little freaked about the high INR. The way I understand it, in a layman's nutshell, the higher the INR, the longer it takes for the blood to coagulate. Having had three truly frightening bleeds, the idea of slow blood coagulation doesn't really appeal to me. However, a bypass was done at the time of my last bleed that seems to have stopped the slow trickle that was dragging down the hematocrit. Since then, I've had a series of IV iron infusions and the HCT has been holding pretty steady, hovering around 38-39. Being less girlie-terrified of bleeds at this point, a high INR doesn't seem quite so fraught with danger. But I digress. My main concern is, beyond the obvious vulnerability, whether or not a high INR brings with it new symptoms I should be aware of. Again, I thank you all for sharing your experience with me.

Post edited by: maji, at: 08/06/2011 01:45 AM

Post edited by: maji, at: 08/06/2011 01:46 AM

Hey maji!

Great to see you back! I always worry when we don't hear from our regulars for a while!

I had two thoughts on what else you may experience with a higher INR: 1) you will probably bruise even more easily and probably darker than before as a bruise is just loose blood under the surface of the skin as a result of broken capillaries. I still get huge bruises and don't even remember getting hit in the spot of the bruise; 2) slow clotting time can be risky for any sort of internal bleed, such as an ulcer or an injury causing an area of your body to be truly damaged. I'm sure your docs will be keeping a close watch on you!

Good luck and a big welcome back!

Dennis

Magi, 7 blocks from your house is pretty awesome for your transplant location! My INR is 1.8 never knew it mattered I go up and down like a yoyo on everything lately. Hope you feel better real soon. My Platelet count was 88 less than a month ago it has since come up as I understand blood cells get replaced every 5-7 days so your number continually flucuate. Hoping they get things under contoll for you soon. Take Care Cheryl

Maji

How wonderful to have your transplant center so close and that you go there weekly. It sounds like you are getting much closer to a transplant and pray that will happen for you soon.

God bless you

Bonnie

My INR was generally in the 1.5-1.8 range, it didn't have a large effect on MELD. I'm not one for bruising and didn't seem to bruise anymore easily at that INR level. In fact, since my transplant my heart has been in arrhythmia, so among other things they prescribed coumadin and wanted my INR to be in the range of 2-2.5. Wouldn't have been a problem with the old liver.

How's your creatine doing?

7 blocks to the hospital, we can only dream of that. Having lived in Chicago, if not to personal, could you share what hospital you're going to?

Oh, of course. All of my docs are at University of Colorado Health Sciences Center.

http://www.uch.edu/conditions/transplant-services/liver- transplant/

The campus relocated from central Denver to the former Fitzsimons Army Hospital in Aurora (my neighborhood). Dwight D. Eisenhower recovered from a heart attack there in 1955. After the base was shut down in 1999, the land was vacant for years (during which time all manner of varmints made their homes in the empty barracks). We loved going there in the early evenings to take photos of the muledeer, fox, raccoons. Univ Hospital acquired the land, and began building around 2003. I've been photographing demolition of old military landmarks while new buildings have sprung up to replace them. The transplant team finally moved over there about a year before my liver finally surrendered to the damage from PBC. So I'm quite comfortable there. Despite the absolute hugeness of the facility, everybody knows us from the time when they were getting acclimated to the new area, and we were giving them advice regarding where to never eat. And which streets to avoid while biking to work in their cute little speedos, lest they risk being shot out of the saddle by area gang bangers. Anyway, great team of folks. They pay attention to my blood work results and watch over me with the type of genuine concern one might expect from a long-time acquaintance. And they treat the Wingman with respect, including him in all conversations, recognizing the stress he's under as caregiver for his 80+ year old parents (diabetic father & mother with severe dementia), and now me with my bizarre little encephalopathy-related quirks, nocturnal sleep patterns, and a past tendency for sudden GI bleeds. So I am very blessed to be surrounded with such amazing support.