The Good, the Bad and the Very Frustrating

Great news to announce, scary news and also a very negative, frustrating story to tell. Good news first: I was seen at the Liver Clinic yesterday and met with the intake nurse practitioner. We fell in love. He said after reading my file about living with a serious lung disease, he expected to see a sad, teary, depressed person. I was dressed to the nines, he stopped in his tracks after opening the door and said, "You look fabulous!" Love that.

We bonded. He also listened to my lungs and COULD NOT HEAR ANY BRONCHITIS!!!!! That is the great news. When my wonderful doctor arrived, he hugged me! I am so blessed with the very best doctors. He wants an ultrasound just to see how my liver and pancreas are doing and I booked it for early December. We are trying to assess if inflammation has arrived in those organs which could cause non-alcoholic cirrhosis. That would stop the goal of having lung transplants in the future. Important. 

I was so exhausted from the week that I took myself out to lunch then went home for a long nap. Last night, we went to Wayne and Jill's house for a nice visit. Their son, Evan was injured in a major dirt bike accident. Fortunately, he was wearing a brace to protect his neck. Unfortunately, in protecting his neck, they are designed to put the force of the fall onto the collarbones. It broke. The real problem, though, was that the foot pedal ended up inside his armpit. Deep inside. Draining tubes then stitches happened. All this needs to be cleaned and rebandaged everyday, which seems to be the most painful part of his recovery process. I mentioned that he needed some candy to get him through this and will drop off a nice box of See's Candy today.

Now the frustrating story: No names. Relatives. A medical issues is not being managed well. The patient likes playing the victim and will not speak out to the doctor. He will not allow anyone to go with him to the appointments. The other relative he lives with is similar. There had been a medical issue that he would not address until it was quite advanced. Now it seems that the inflammation has spread through his entire body, he has a high fever and he is becoming unresponsive. Simply, he is dying. He is waiting to return to the doctor for a Wednesday appointment. For over a year, I have been trying to work with them to be verbal about the issues and expect further tests or even a stay in the hospital to determine the root of the problem. After more than a year, there is still no diagnosis to a very dramatic problem. I have tried. I have offered lots of support and information. I must remember that old phrase: you can bring a horse to water but you can't make him drink. That is so true here. Michael is contacting another relative this morning to try to get her more involved. They respect her. They listen to her. It is so frustrating because I believe this person should not be as ill as he is. 

Scary News: Mom got her results from her echo cardiogram. It is not good. She read the report and it is very medical. The only thing she remembered was, left bundle branch blocked. Doesn't sound too awful until you Google it. This is usually a result of an underlying serious heart condition. I am going to read the whole report when I see her today and talk with the cardiac rehab nurses at rehab this morning  about what it really means to have this in non-medical terms. I am just not ready to lose her.