following is a letter that my new Caregiver Samantha Means put together to help me describe some of my health issues and needs, thank you for taking the time to read it and be concerned for me as your friend and Sister in Christ...I'm also going to post it on my FB page Awareness 4YSIC because I believe it is a truly considerate and appropriately helpful letter for any and all who are concerned about my health situation...
As Lori’s caregiver, soon to be recognized by the State, I’ve done extensive research to fully understand what Lori’s body is going through to better take care of her when the time calls for it. I believe it’s very important for others close to Lori to also understand what is happening to her liver and the affects it has on her mind and the rest of her body. Please feel free to share this information with anyone else you believe might benefit from it.
She has what’s called non-alcoholic cirrhosis of the liver, also known as chronic liver disease, or fatty liver disease. This is a chronic illness, meaning it’s ongoing and incurable (except in the long-term form of a liver transplant). Chronic liver disease is the continual scarring of the liver until it is no longer able to function. The liver’s primary purpose is to process all of the nutrients and toxins that go into the body. This isn’t just food, it includes lotions we put on our skin, products we put into our hair, and the chemicals used to clean our homes that we inevitably inhale and get on our hands.
Cirrhosis of the liver means the liver is turning into scar tissue and, over time, this makes it difficult, eventually impossible, for the liver to process any of the nutrients and toxins it’s supposed to process in order for the body, as a whole, to function. It is this condition that gave her Type 2 Diabetes.
The liver has what’s called a portal vein, which transfers 75% of the blood, nutrients and toxins to the liver for it to process. As the liver turns to scar tissue, the portal vein suffers. Toxins and blood back up in the portal vein, much like a kinked hose. Eventually, these toxins and the blood have to go somewhere. As Lori’s condition progresses, it will lead to hemorrhaging, or internal bleeding. In her current stage of cirrhosis, toxins flood her blood stream, which causes severe damage to her other organs, such as her kidneys, bladder, stomach and colon, or intestines. This would explain the continual problems Lori has had with kidney infections, being in and out of the hospital with UTI’s (urinary tract infections), and her more recent development of gastroparesis.
Gastroparesis is a condition in which the muscles in her stomach don’t function properly. It prevents her stomach from emptying correctly and interferes with digestion, causing nausea, vomiting and many problems with blood sugar levels (visit MayoClinic.com for more information). In the previous six weeks since agreeing to take care of Lori, it has been common for her blood sugars to be at 110, which are good, and drop to 56 in less than 30 minutes. If Lori’s blood sugars drop into the 30s, her body has a very high chance of going into a coma. Just this previous Sunday (June 2nd), Lori had three episodes of dropping to the low 40s in less than 18 hours. I’ve monitored her eating habits and she has a strict diet that I help her maintain. The fluctuations are due to the gastroparesis, caused by her chronic liver disease. Apart from treating the symptoms, there is no cure for gastroparesis. It isn’t like an infection and needs a simple antibiotic. Unfortunately, her body has not been willing to cooperate very effectively with the medications.
In addition to this, toxins unable to be processed by her liver that spread to her abdominal organs also spread to her brain. It leads to dizzy spells, confusion, double vision, disorientation and the like. This is the primary reason Lori cannot drive a vehicle. It would be like handing keys to someone who is chronically intoxicated. There are times during the day Lori is doing well, but there are also days, sometimes several days in a row, where it’s difficult for her to cross a room without grabbing hold of something for balance. This imbalance leads to very dangerous falls. The last one caused her to shatter her left wrist, which now has a plate and eight screws in it. One of the symptoms of chronic liver disease is osteoporosis. She is prone to easy breaks, hence her wrist. Because of this, the safest form of exercise is for Lori to be in a pool. She cannot go on long walks because she lacks the energy, and also because of the likelihood she could fall and have another bad break. It’s very important for Lori to be able to be active, because in order for her to be eligible for a liver transplant when the time comes for it, she needs to be at a certain weight, which is where the pool comes in. Any other form of activity, with her imbalance, is simply too dangerous.
One sobering aspect of this condition is that in a matter of 48 hours, at any time, Lori can go from seeming perfectly healthy to hemorrhaging or go into a coma due to the cirrhosis. This is the point where she’ll need a liver transplant. There is no way to tell when this time will come. It could be next year, five years from now, or as soon as tomorrow. Each drop of her blood sugars, each trip to the hospital, and every time she’s spends a few days sick in bed could mean that time has arrived.
This is a lot of information to process. I encourage you, as part of Lori’s small group, to do some research on your own about what is happening to Lori’s body in order to better understand what it is she’s going through. We’re called to uphold the weak and be patient with all (1 Thessalonians 5:14), bear with one another (Colossians 3:13), comfort one another (1 Thessalonians 5:11), have compassion on one another (1 Peter 3:8), to not grumble against one another (James 5:9) and, above all, to love one another (1 John 3:11). Lori can manage her symptoms to a point, but what’s happening to her body is essentially beyond her control.
While I am Lori’s official caregiver, she needs assistance 24/7 and I am not capable of doing that all on my own. When her sugars drop at 2am and she’s unable to get out of bed to get the food she needs to get her sugars back up, I’m awake with her doing it for her. This is not enabling, it’s helping someone who can’t help themselves, much like the Samaritan who helped the man beaten on the side of the road. The same goes for when Lori needs a ride to small group, when she needs someone to sit with her at the hospital and write down what the doctors say because she can’t focus on his words, when she needs help picking up her son Alex from the bus station, or dropping him off when she gets to see him once every six weeks, or when she needs someone to help her pick up David from the Carlson’s house so she can have her one day out of the month with her grandson. This is not enabling her. This is helping a woman who is otherwise unable to do things on her own. If she can’t find someone to help, she doesn’t get the help she needs, or she doesn’t get time with the people that matter most to her – her children and grandchild.
It’s very important to remember that Lori must get worse before she gets better. This disease will eventually kill Lori if she doesn’t get a liver transplant. As time passes, the condition of her body worsens, and she needs more help. Sometimes she’s unable to do the things she originally planned to do because her body won’t let her. If Lori pushes herself too hard, she can wind up spending a week in bed while her body attempts to get back to what’s considered “normal” with her condition. She tends to push herself too hard when she can’t get the help she needs from others, and will try to do it herself. She’s learning to have me as a caregiver, but this is very difficult for a woman used to caring for others and being able to do everything on her own. Please understand that when she asks for help, she’d rather not ask at all and do it on her own. If she asks for help, it’s because she genuinely needs it.
I hope this letter clarifies what is going on with our sister, and that you find it in your heart to be understanding. If you want to learn more about this condition, www.mayoclinic.com has a lot of useful links and more in-depth information. If you have any questions, please ask Lori or myself and we’ll be more than happy to answer them and clear up any confusion.
Your sister in Christ,
Sam
