This is Diane, Pat's wife writing. The doctor said the reason he didn't do the vital lung test was because Pat showed no signs of respiratory distress. When we expressed interest in a peg, that is when he had Pat do the test, and referred us to a gastro dr. at Loma Linda. That doctor wanted us to see a lung doctor, but they wouldn't give us an appointment until Pat had a chest x-ray and some other test first. All I could think of was that you have to stand up for a chest x-ray and I told them Pat couldn't do that. No one told me that it could be done another way. I found out later it could. They told me that someone would call me after the two doctors talked it over. I waited, but no one called, so I called them back. The doctor we saw was not there, but another doctor said that they were referring us to radiology and to expect a call from them. No one called for a week. Finally, someone called from radiology and asked me a bunch of questions, and then kindly explained that if they did the procedure their way, they would do it with a general anesthetic and with Pat's VLC he most likely would not breathe on his own afterward. But they wanted to talk to our neurologist first. Again I waited for a phone call, but none came, so I called the neurologist to find out if they had consulted with the people in radiology. I had to leave a message and my call was returned days later. All this back and forth and waiting for calls to be returned took 6 weeks! During this same time, we were also waiting for the Bipap Rx to be faxed to Pulmo Care. I would call Pulmo Care to see if the Rx had been faxed, but they said it had not, so I would call Loma Linda and leave a message to check on it. They finally said that they didn't see an order for one, but remembered doing the VLC test. They finally got the Rx faxed and then asked us to come in for an appointment the following week. They did the test again and it was lower than before 15%. (However the test was done late in the afternoon, and our respiratory therapist said that a test done that late in the day would not be expected to have a good result.) The doctor said that he could call and check if the gasto doctor would be willing to do the peg with Pat on a Bipap, but the gastro dr did not think that would make any difference. I told the doctor that if our choice was to do the peg and risk Pat not breathing on his own, I'd rather not do the peg and keep him around as long as I could. So then he asked if we wanted Hospice. He faxed the order for Hospice and we are done at Loma Linda. He gave us no hope at all that the peg could be done without risking breathing problems that would force us into an end of life decision.
Last Monday, we were in the ER because Pat was in horrible pain in his lower back. They think, but can not confirm that he has a kidney stone. Our family doctor is now our only doctor, and he isn't convinced that it is a stone, and gave us an Rx for antibiotics. Now here is where I am angry! Pat can't swallow the pills! If he had had the peg, I could have given him the meds through the peg.
I hope this explains all the questions about how this all came about. But I think we got lost in Loma Linda's system as we were shuffled about from specialist to specialist, and in the process they wore me out. I did have an appointment with another doctor for a second opinion, but we canceled it as that was the day Pat got out of the hospital, and he was in pain.
Right now we are focused on getting Pat out of pain, which has been severe. Although we are in Hospice and it may seem like we have given up, at least the Hospice nurse returns calls on the same day, she is compassionate and caring. Thank you all for your concern and encouragement to seek a second opinion. After this crisis of Pat's pain is over, maybe we can think about it again, but right now we are going through hell with his pain and I can't think about anything else right now. I can't stand to see him in pain. I am at the end of my rope with doctors and I know you are all trying to be encouraging, but it just reminds me that I have not done all I could for my dear husband. It is a regret I will have to live with for the rest of my life.