Cruisin with the Real"s

Cruisin with the Real"s
Joe and Nancy Grand Cayman 10-07

Loma Linda Medical Center

Loma Linda Medical Center
Where the magic happens........

Friday, September 5, 2008

photos of fun symptoms of cirrhosis

I thought I would post some photos of things I found on the web to visually help you understand some of the MOST COMMON symptoms that we liver patients suffer. None of these are of me or anyone I personally know but they sure could be including the upside down pug peeing on the tree! LOL ( I really need to post some pictures of my pug and bulldog!) The photo of Salt is a description of what we CAN"T have or we end up looking like the people swollen with edema (legs) or ascites (abdomen).

The person with Jaundice really does look like the color I used to have and to some extent still do. People think I am *tan* although my eyes are still very yellow. At least I don't scare people now!

These are all very real. And common. And as a matter of fact some are mild, considering how bad it can really get. I have had variations of all these and have many friends who have varying degrees of them.

So, this is the deal. When we say we are tired.... we ARE. IT IS A SYMPTOM. It isn't like when YOU are tired...not a bit. We can't help it....It just is. Don't tell us to get up earlier, to go to bed earlier, to get some exercise, to eat better. Although those are all good things to do...Those are not our problems and they aren't going to fix the SYMPTOMS.... They are REAL symptoms of a very REAL disease. OUR LIVERS AREN'T WORKING CORRECTLY....

When we say that our feet are swollen....or we need to watch our salt. It doesn't mean we need to take off our shoes, and they will be better the next day... When we gain 5 # in a week......we are worried that our bellies will look like the one above soon and the Dr's will be sticking needles in us to drain liters of potentially dangerous fluid off. over and over again....

When we say we are cold...we don't need a sweater...(well, that could help!) But we are FREEZING not because it is cold (it could be 100* outside) but because our internal thermometers are broken...

When we are constipated...(sorry, no photo's of that one!) We are afraid if we can't go to the bathroom our toxins will build up to a point as to cause confusion, delirium, and even a coma because our ammonia levels get to high. This can also make us very, very in vomiting from to many toxins in our body. (Encephalopathy).. It doesn't mean we need to eat more fiber. it means we need to take our LACTALOSE!

When we need to PEE, get out of the damn way! WE DO AND NOW!

When we are having trouble swallowing we could be having our veins inside our esophagus be filling up with blood so much that they pop open which would be a life threatening emergency as in BLEEDING TO DEATH...It happens...ask any ER nurse.

When we say we can't eat or aren't hungry. It is literally very hard to even get a bite down...Give us *ensure* or some kind of high calorie, high fat food. ice cream, anything...just get some nutrients and calories in us...

CRAMPS, another of my favorites...... We get these very interesting, sudden, crippling cramps! The first time it happened to me I didn't know WHAT was going on because it seemed so unrelated. The mostly happen in our extremities, shins, calves, feet, hands, fingers and lower arms. They happen swiftly, without warning, very intense and in weird places. In muscles like your shin or on the top of your food. When stirring a pot or writing your hand suddenly becomes twisted and deformed and it HURTS LIKE HELL. They aren't like the cramps you have had so don't even try and relate....(take quinine tablets or drink tonic water. I keep a bottle around and chug it.. warm heat helps too)

The reason I thought I would post this is for a couple of reasons...

One is to let others suffering from these symptoms to know that they are common and YES, they are real. They happen to all of us.. It is helpful to know that they are related to your disease...(that is what a support group is for!)

The other is for friends, family and caregivers to know that they exist, are very real, and that you REALLY can't relate. As much as you think you do. You don't. You can't unless you too have had liver disease. (that is what a caregivers support group is for..)

We don't want to whine, complain, try to tell you how bad it is......We really don't want to.....But we do want you to know that they are real and just please be kind and gentle with us when we need a nap, need to put our feet up, need to take a hot bath, or need to get support and knowledge from online groups, face to face groups, read books, talk to other patients, etc. It helps us. Lord knows it has helped and continues to help me!

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