MrMattyMatt - You're correct in your observations. The moderators tend to dominate most of the discussion forums on this site. It is unfortunate and quite counter-productive....
Without limitations, our medical costs will continue to spiral out of control. There is the unfortunate requirement of quantified limits. But these can guide patients towards the proper utilization...
Should prove interesti...
First off, I'm a new CP'er but I understand a valid implied question here but I also understand the solution is inappropriate. Recently I had to go in for a long invasive, abdominal surgery that...
Worried Daughter - One thing to consider is to "whom" the pathologist/radiologist is addressing in the report. So I take it that he's trying to communicate to the clinician (your doctor) that what he...
Yes, the article is correct in regards to the actual cause of the itching. The more popular hypotheses lean towards the bile acids/salts (keep in mind, this is different than simple bilirubin) being...
Worried Daughter - I assume this refers to an CT or MRI report and is in the contrast enhancement section of the report. Can you be more specific in the context since this has a direct bearing as to...
jm - Was the doctor you refer to here, for the CT, your hepatologist or just your pcp? Also, I can only see your recent past in the previous notes. Has your liver been previously diagnosed with NASH...
livelife - Just a short list of things for you to pay attention for when talking with the doctors. And, as themiz mentioned, the resources will help your knowledge base a great deal too. In...
just-man - That's why I phrased it the way I did. He's correct in the primary vs secondary sense of the word wrt cholestasis. Both PBC and PSC are primary in that they attack the bile ducts directly...
... and what Vickie says is very true too. So please check with the local pharmacists first so you don't jeopardize your brother's care that he may really need....
Suazo - It certain can happen with pain doctors but is fortunately fairly rare. They recently arrested two doctors near me for medical fraud and prescription abuse. Just talking to nearby doctors and...
livelife - As Plant has said, drinking only leads to one inevitable endpoint and it won't be a pleasant ride, if this is what he so chooses. But if he's interested in life, then start documenting his...
Worried Daughter, Yes, you are correct that moderately differentiated tumors are generally more well behaved that poorly differentiated ones which can grow very rapidly and like to spread among...
Wonderful! There you go, from the expert, so now you can focus on other possible causes other than your liver. He's right in that the cholestatic forms of liver diseases, PBC and PSC (my favorite!),...
Just-man, do you happen to smoke as well? With the redness and itching combined with some form of Raynaud's, PVD comes to mind ... peripheral vascular disease. The impeded blood flow can cause a...
I'm like Dany in this area as well. I have an autoimmune liver disease with positive ANA and my Raynaud's drives me crazy. I don't think it's liver related at all though....
... on a more amusing note, your message's title could be used as a battle slogan for all of us with advanced liver diseases. That's how our life's kinda bounce along ... "Another 3 months!" ... lol,...
Zo - My bad, PSC stands for: primary sclerosing cholangitis. Basically my auto-antibodies have decided to wage war on my bile ducts and my bile ducts lost! Obviously not a very healthy thing for your...
Great to hear that your latest MRI looks clean! Let's hope your next one goes as smoothly and things can start to settle down from an immediate metastasis standpoint. Is it HCC that they're concerned...
You might try the Lupus forum as well. I have Raynaud's big time as well and I have talked to others there before about various autoimmune issues. Most of the AI folks tend to have the pleasure of...
I have an entire set of Cd's of the various CT's and MRI's. All for free too, can't imagine charging $25 ... it takes them less than a couple of minutes to cut the Cd. I usually get it done...
Hi lavender. Sorry to hear about your abrupt hospital stay, very rude disease this ESLD is sometimes. Being on your own (your husband's traveling to help mother?) certainly has it's hazards. I'm...
Do you happen to know if you have an enlarged spleen as well and/or a low platelet count? Have you noticed any GI bleeding? These would be clues to the nasty portal hypertension creeping up on you. I...
Hi Susan - The simple answer is: yes, you can have ascites without the peripheral edema. How advanced is your ESLD? You mention AIH, which is typically treatable as you know, but did they catch it...
Just a question due to ignorance on my part: is there a billing issue wrt dual listings and our "ever so cost minded" insurance companies? I'm not familiar with any of this and I would be wondering...
It seems that your liver doctors have things under control wrt your potential liver disease. I'm with Susan - doing biopsies should be only under very specific circumstances, they're very invasive....
I'll take my nephrologist over both of my previous urologists and one was the department head of a major group of hospitals. Besides, my kidney doc lets me look through his microscopes too, way more...
Alex - Something you can do or have your dad do is to weigh in every morning and record it. It's a good way to help quantify how much water he's retaining at a given moment. Kinda hard just by...
WD2 - Yes, the doctors are quite worried but we've been trying to find the best solution to move forward with, very tricky. Unfortunately, it's not HCC they're worried about - it's intrahepatic...
By crude I mean that it's not sensitive nor specific for any particular type of cancer or other endogenous insults. In other words, not much use at all really except for use as a cheap and easy...
It's kind of a crude systemic inflammation marker that's useful with certain forms of cancer, HCC being one of them. Typical normal people will run around 1.5 to 2.0 or so. But when it gets up above...
Something I forgot to mention is that I do have one needle entrance location that has bothered me for over 6 months now. It wasn't during any of the paracentesis procedures but from one of my needle...
Hi HepCat74 - Something to note about liver disease is that it can cause a good portion of what you've listed. But it may do this in some individuals but not others. And it is very poorly correlated...
LS - Glad your dad's through his first paracentesis, kinda unsettling to think about it at first (big ol' needle) but not so bad after you've had it completed. At 16 lbs, they pushed him to the limit...
Not to alarm you but it sounds like your doctor is referring to the "nodularity" I had mentioned. There are a few uncommon diseases that can cause macro-nodularity without the architectural changes...
Hi Ten - US can certainly be suggestive of cirrhosis but the definitive way is still a needle biopsy. Biopsies are a bit risky (although small) so they will mostly shy away from doing it unless...
Zoarie - I'm pretty sure the retyping messages thing isn't just you. It seems these message entry areas tend to lose/confuse the input focus very easily. I hope that the tech powers that be are aware...
Btw, just from my personal experience, the actual procedure (the big ol' needle part) doesn't hurt at all and this from someone who absolutely hate needles. Most of the times, I barely felt the...
Alex - Depending how much water they pull out of your dad during the paracentesis procedure, he may be smiling quite a bit next Monday. I've been there a number of times and the relief is almost...
SL - Very cool, being able to do marathons! You're way ahead of the game compared to most here with advanced liver disease, myself included. I am happy just being able to make it to the mailbox and...
Sounds like you're taking care of yourself which is great, and certainly no alcohol for sure. Again, just having cirrhosis will tend to drive your individual baseline AFP levels higher than...
Cirrhosis can can and often does elevate your AFP levels by itself - no HCC needed. That's what makes things tricky for our doctors. It seems that you have a fairly well-sampled set of levels over a...
Hi 2putts - You're in the right place, we have quite a variety here wrt forms of liver disease, myself included. Can you fill us in a bit more about yourself: are you overweight/BMI, other health...
Thanks K but I've used a mag supplement for quite sometime now to no effect. We monitor all my blood numbers on a weekly basis so we're able to detect electrolyte imbalances, etc. And yes, my liver...
xxer - Not sure if you're still out there but I'll update this thread just for knowledge/experience based followup stuff anyway. My doctors have done very extensive testing for my auto-immune issues....
Chris - Glad to see you've "powered" through one of those CP moments ... that we all have here just like you, and that you know were to come when you need to now. I'm up again as always but I'm...
That's great themiz, he's got to be feeling pretty good right now. I remember when I could actually start seeing the extra little details (veins,ligaments,etc) coming back while taking showers for...
I'm not able to work at all myself due to the combination of my ESLD and advanced connective tissue disease slowly destroying all my joints throughout my body. The fatigue is debilitating as well. I...
I think the time stamps on our messages says it all. Just knowing your not alone with all this should help I hope. Sleep is certainly a interesting topic now days and friends I know without any CP or...