A Picture Paints A Thousand Words

You hear it all the time: a picture paints a thousand words. Look at this one here. I couldn't tell you when it was taken, or any other context. I can tell you it was quite some time ago, maybe when she and Rob were still dating. She was a bit younger. Healthy. Happy. Many happy, healthy, years ahead of her. Sure, years have passed. But with most people, years pass slowly. What I mean is that aging happens gradually, and that as health inevitably worsens in old age, there is an expected timeline for the process. We have all seen loved ones who were not so fortunate to have their health follow this expected course. We all know people who have been diagnosed with cancer or some other horrible disease--people like my dad, who have withered away, who we could not do a thing to help except to be there. We have watched their bodies betray them, and told others about the horrible things happening, knowing that words are only worth so much.

There's Mom, right in the middle of the frame this past Christmas. It's the only picture taken that she would let us keep, because it hides how sick she looks pretty well. If you look closely, her right hand is jaundiced. The picture does not show well that her entire body is jaundiced, as are her eyes. Exactly how yellow her eyes and skin are has fluctuated throughout her illness, but the presence of jaundice has been fairly consistent. Then there's the weight loss. You can tell that there is almost no "meat" around her wrist. Her face has thinned out considerably, but it does not look healthy. The fabric on her sweater is bunched, having no fat to cling to. Liver disease has made her very skinny, leaving her with an almost anorexic appearance. Her appetite is generally very low, and even the most nutrient-dense foods and supplements are not enough to put weight back on. The black contraption wrapped around her is a back brace. At the time she had six fractured vertebrae. Liver disease has weakened her bones and her body. Ironically, limited mobility is what broke her bones. They have since healed, but back pain remains. If you look even closer at this picture, you might be able to spot her belly pooching out underneath the brace. Her belly has been extremely swollen throughout her illness, a condition called "ascites." Fluid collects between her skin and her organs, which has caused tremendous discomfort. Doctors can periodically drain this fluid, but it comes back very quickly--usually within a day. Although the fluid is always around her abdomen, lately her arms, legs, and digits have been alarmingly swollen as well. Because of this swelling, she and her medical staff must be hyper-aware of how much she drinks, and she is on a very strict fluid restriction. This above picture offers a taste of what mom looks like and goes through, but the next photos offer a clearer picture.

 

THESE. Are our new normal. The photos were taken just yesterday. Mom's body is weak. She is, plain and simple, not doing well. These photos show her jaundice more clearly; It is pretty heavy in her eyes as well. She is on oxygen for pneumonia that occured as a complication of liver disease. Her skin is frail, as many elderly peoples' is; She cannot even use a regular band-aid because it will rip her skin. When her skin breaks, as it does often, she is left with a dark blotch beneath for weeks. The bandages on her arm are currently labeled "skin tear" and dated. She has one IV on her arm, and another on the right side of her neck. The band-aid on the right side of her neck is labeled with a warning to doctors: do not insert an IV here, in case she needs this artery for dialysis. She is a tangled mess of wires, each of them constantly measuring her vitals. She has a catheter which (thank God) is collecting urine today--meaning her kidneys are okay for now! However, the pictures say a lot: liver disease has taken my mom's health and independence. Every improvement seems to be "one step forward, two steps back." 

To anyone reading: We realize what we are asking of all of you. to many of you, we are just another family of strangers going through a hard time. To those who know us and haven't seen my mother for a long time, it is easy to hear these stories and think "how bad can it be? She was fine awhile ago." I try to put myself in all of your shoes, and I'm sure it can also be easy to say "someone else will step forward, I don't need to be a part of this." I would give ANYTHING to save my mom--she's the only parent I have left. By you who are reading this sharing, calling to be tested, and asking the same of your friends and family, you are doing my family the biggest service that could ever be done. I also realize there are concerns with practicality: We are asking anyone and everyone to consider major surgery. That's nuts, I know. But Yale is the best hospital in the world, with the best doctors there are--for taking such good care of my mother, they will take great care of you. Travel expenses? Can't afford to miss work? Local organizations have set apart stipends for anyone willing to help us--money to help cover travel expenses and bills for work missed (NOT paying for an organ). If I sound desperate, it's because I am. We all are. We may be strangers, but you are a stranger to somebody too, and we're sure you would take the same measures in our situation. PLEASE look at these pictures, and look within. We are waiting for our hero.