It's been almost six months since I did an update on Patrick's progression. There is always a sense of sadness for me with these posts, because I look at the prior "How's Patrick Doing" and consider what has changed. It's my own FRS (Functional Rating Score) and unless I completely bury my head in the sand I must admit that there has been a decline.
Interestingly I'm going to start with a health issue that is not ALS related, but resulted in Patrick being in the hospital for the past week. This will be a two parter - the first part is about Patrick's current health events and the second, will chronicle his ALS progression since January.
Drug Reactions
Patrick developed a urinary tract infection about two weeks ago. The infection came on quick and the doctor prescribed Bactrim which is typical for these types of infections. The prescription worked well for the first couple of days, the symptoms associated with the infection declined and he felt better. But the third day into the medication he developed a very high fever, headache, chills - just to name a few ailments. Frankly, he was miserable. I contacted the doctor who felt it was likely the infection was just running its course, but to come into his office and have it checked out. We made an appointment for the following day and hoped he would start feeling better.
Unfortunately, the next day he felt worse. So the question comes up, do we go to the emergency room or go to the doctor's appointment? Well, I chose the latter (not sure if that was the "right" decision or not frankly) the physician's assistant didn't really know what to make of his symptoms and she said that doctors can no longer directly admit into the hospital, so we'd have to either ride it out or go to the emergency room. We opted for the emergency room, but stopped by the house to pick up some things (my experience is you spend a lot of time waiting, at the ER). However, when we got home, Patrick was barely mobile and we wound up calling 911 and the ambulance took him to the hospital - which probably got him in quicker, not really sure.
When the ambulance arrived at the house he had a fever of 104, he was completely exhausted and showing signs of dehydration. So they rushed him over to Mercy San Juan Hospital. They got him on fluids right away, but they could not determine why he was so ill. The doctor told us immediately that he would be admitted and they were considering the possibility that he was having an appendicitis.
Patrick spent six days at Mercy San Juan while the symptoms ran their course; he went from fevers, to chills, to a head to toe rash, to sore throat and breathing difficulties. If you read "Dr. Google" you'll see the list of symptoms for extreme reactions to Sulfa drugs, Patrick got them all! As I write this he is still covered over most of his body with a horrible rash. He is a little slower than before but starting to bounce back. Gratefully his sense of humor and calm demeanor never left him.
He couldn't recall ever taking a sulfa based antibiotic, in the past he had been on penicillin derived drugs so this was his first (AND LAST) time.
ALS and Illness
A severe drug reaction is awful for anyone but for someone with ALS it causes a multitude of problems. There is a level of tiredness that all ALS patient's have, the body is always working, so they are constantly burning calories. Most ALS patients I know, take naps during the day due to their exhaustion level. We all know how awful we feel when we're sick and exhausted. Now add ALS to the equation and you understand how utterly zapped Patrick felt. This is still challenging, and as I write this, he sleeps.
His mobility issues were dramatically impacted, he went from walking with a walker to barely able to stand. Getting to and from the bathroom became tremendous battles. It's amazing how far the bathroom looks when you are having difficulty moving. The weakness in his hands and arms was very significant. He was barely able to lift his arms, which when your whole body itches, is a tremendous source of frustration. The movement in his legs has returned but his hands and arms are still recovering.
Of course, the scariest symptom was the effect on breathing. We all have to breath and with ALS the diaphragm is already compromised so adding an illness that is weakening your breathing can make things life threatening quickly. Fortunately, at this point Patrick has not developed the breathing problems associated with ALS so although it was scary it wasn't too severe. We both ponder what the outcome would have been had his breathing already been comprised (I think I'll just be grateful that wasn't the case and not dwell on it too much).
Hospitals, Nurses and Staff
Mercy San Juan Hospital is an interesting place. It's an old hospital that was renovated with a new section attached. The layout is kind of funky, with only one entrance in the new section where you have to work your way through a maze to find the right bank of elevators to the old section, which is where Patrick's room was. I knew Patrick had been there too long when I no longer made the wrong turns and found a quicker exit to the parking garage. The first night we were there I set off an alarm by opening an emergency door - yeah, I high tailed it out of the area and played dumb... don't worry, no one was hurt by me being lost and wandering around the building.
The staff at Mercy San Juan were extremely nice (minus one night nurse that Patrick called Nurse Ratchett). It's interesting that even in a hospital environment I found myself having to explain to staff about ALS. It is a rare disease and frankly ALS patients don't wind up in the hospital all that much - there is no treatment so it's only when they suffer a fall or have serious breathing issues that they head to the ER. It's a little disconcerting that I seemed to know more about the disease than the medical professionals. At one point a nurse kept trying to hand Patrick items and I had to tell her "he can't take that from you." - She was very understanding after, but in that moment it seemed a little strange to me.
I was worried when I wasn't there that the call button would move under the covers and he couldn't reach it. I wound up feeding it through his sleeve to keep it near his hand. I think Patrick was the one that relaxed me a bit, he said, "Really what is the worst that could happen when you're not here - heck I'm in a hospital!" Overall, truly the staff was amazing, thoughtful, funny and really smart when it came to moving him around. I learned quite a bit from just watching them.
Shared Hospital Rooms
Patrick had the misfortune of being placed in a shared hospital room initially. Those of you who haven't had the experience of a shared hospital room - basically, you're separated by a curtain so you hear and witness everything happening to your roommate, as well as he witnesses all of your activities (private and otherwise). The first night, his roommate kept the television on 24 hours and because he had limited hearing, it was on loud. The nurses were kind enough to get Patrick a pair of earplugs.
The second day Patrick got a new roommate, a gentleman (I use that term loosely) that after hearing his rantings, swearing and harassment of the staff, desperately wanted pain medications that he ran out of at home. He was angry, very angry at everything and everyone. Patrick and I listened to him for the better part of a day, he ranted when people were in the room and when they left the room. He required oxygen and had his wife sneak him outside to have a cigarette. That was one of the biggest disagreements with hospital staff, apparently "you can blow up the whole hospital doing that." The head nurse at one point came down and told him to stop harassing the staff.
The "gentleman's" story unveiled before us, he was in the final stages of COPD and was given about six months to live. The doctors, nurses and social workers all encouraged him to be put on hospice care. Apparently, hospice has more liberal rules regarding pain medication whereas doctors are limited to prescribe only so many narcotics to a person in a month (if you think about it, it makes sense.) The interesting piece is that after all of this, the "gentleman" and his wife left the hospital refusing hospice. The reason stated was that his wife didn't want people in their home and he didn't want to not be taken to the ER. How people make their decisions are odd to me, but the doctor said "I'd like to see you somewhere other than the hospital, but I think I'll be seeing you again here." I suspect he's right.
Anyway, this experience made me think - Firstly, you have six months to live, how do you want to live it? Does dying give you the right to treat everyone with hate and anger? Secondly, I looked at my husband who is 25 years younger than this "gentleman" and has a right to feel "ripped off" and there he was his usual calm self - chatting with the nurses, bragging about his daughter earning the Girl Scout Gold Award and looking forward to heading home. Truly we all have choices...
Part 2 to come... "How is Patrick Doing? (recent illness aside)
