“Advocating For Your Life” Chapter 14
When I was first told I had ALS, I had to look it up. Amyotrophic lateral sclerosis (a-my-o-TROE-fik LAT-ur-ul skluh-ROE-sis), or ALS, is a progressive nervous system disease that affects nerve cells in the brain and spinal cord, causing loss of muscle control. ALS often begins with muscle twitching and weakness in a limb, or slurred speech. Eventually, ALS affects control of the muscles needed to move, speak, eat and breathe. There is no cure for this fatal disease.
Reading this was crushing. Death? How could this happen and what could I do about it? After doing some research and now living with ALS for the past 1 ½ years, I realized I am not the only one who had to look it up. If you've never faced ALS on a personal level you may have to look it up as well and that makes sense to me but, what continues to surprise me is the lack of knowledge about the disease in the general medical community.
It took just over a year and three different neurology specialists to be diagnosed. Eventually I found this to about the average time for a formal ALS diagnosis. Right after I was referred to the Veteran Administration (VA) ALS team and thought I was on a clear path from then on. However, this was not even close to what I found when it comes to ALS medical care. I can only tell my story firsthand, but I have heard about similar situations from many Patients with Amyotrophic lateral sclerosis
(PALS) in the community.
As mentioned in Chapter 13 “The Man Card” on 28 October, I had elective surgery to get a trach which was needed for my overall health. Everything went as expected with the surgery itself, but it was the after care process where I found that the general medical community lacks in understanding ALS care. Over the next two weeks as I sat in my room recovering from my trach many nurses would take care of me. The nurses of course understood general patient and recovery care but, when it came to understanding and caring for PALS, they weren't equipped.
I have never had to stay overnight in a hospital before, and Laura has only needed to when she had children. Going into the recovery phase of the surgery was very new to us. We naively expected that the medical staff would have an understanding of how to take care of an ALS patient. However, sitting in the hospital after having my surgery, we quickly realized that the care I was given was adequate to keep me alive, but not to address me as a PALS. They looked at me simply as a patient with a trach, but not an ALS Patient with a trach. My needs were much more specific than just recovering after a standard procedure.
If you are a patient with any special circumstance you need to advocate for yourself. Even better, you should have an advocate speak for you. During my stay I was blessed to have Laura, my sister in law Celia and great friend Denise each making sure I was taken care of. Nurses in the field today seem to have general medical care knowledge, but my experience was that they were not equipped to care for additional special needs. You need to teach them what your needs are. Then, once the shift change happens, you'll also need to teach the next one and any others after that. Make sure they add your needs to the nurses notes as well. For me, this was important as a non verbal PALS. For example, when the nurses were performing trach suction some were very aggressive and went too deep. This caused an internal injury that I am still recovering from. After speaking with the doctor we determined the suction tube should go no deeper than 13-16mm. I had some nurses go 22mm and another said, "that’s fine, it was only going into [my] stomach." My stomach? The trach goes directly into my lungs. We made sure the notes were added to my chart to ensure no more continued damage.
While there, I also replaced my feeding with a new sexier version. The tube is called a Mic-Key low profile feeding tube, and only one nurse on our team had ever seen one before. We had to teach the first nurse how to use it which was fine, but we assumed that the nurses would teach each other during shift change. Well, that did not happen for FIVE days. At every shift change Laura would have to teach the incoming nurse how to use the new tube. Why was there an improvement and understanding on day five? Because we'd had enough and Laura went to patient advocate services and nursing team had also started to repeat by then and come back.
ALS patients need to move, eat, and keep a routine to the best extent possible. The hospital wants you to sit, eat, and shut up. I certainly understand shortages and the need to help other patients, but basic care aligned with special needs must be addressed. This is where your advocate must stand strong and push for proper care. During my stay, I had the full spectrum of nurses. One lied saying they read the shift notes before attempting to treat me when we knew for sure that he hadn't, another sleeping on duty as I got out of bed, and some of the absolutely fantastic, caring nurses we'd hoped for. You and your advocate should be very observant. Take your own notes with time and dates. If you don’t want a certain nurse, you should be empowered to ask for another one. We kicked three nurses off my care team and that required the staff to make the change.
One big concern with with PALS has to do with CO2 because we cannot expel it from our bodies like you would normally. This turned into a big issue for me on day five. Throughout the week, and for a few weeks before that, I had been very agitated. Laura was saying something was wrong - that I was not the man she knew. I had been on BPAP machine a little in the hospital, but mostly just oxygen. My CO2 was building up but no one knew to look into that. Laura had asked to have it checked but the staff hadn't done it. On Friday night, Laura had just gone back to her room when I had an attack. My pulse was over 150, my oxygen dropped into the 70s, and I called Laura thanks to speed dial. She was back within minutes and as she says, “she thought I was going to die right there.” The nurse tried telling her it was a panic attack and Laura refused to accept that telling them to look at the numbers and my condition and she was right. After I settled down they finally took a blood gas test, and sure enough, I had CO2 poisoning.
Enough was enough. Visiting hours were 11AM – 8PM. At first, Laura respected these posted times, but after Friday's episode, Laura was by my side damn near 24/7 to make sure the I received the proper standard of care I needed. When confronted by the staff, Laura told them she was my legal caregiver and wasn't going anywhere. My recommendation for others is to start doing this from day one.
Don’t let the hospital over medicate, either, I went in on day one with no regularly prescribed medications. By day two, I must have been on 10 different drugs addressing pain, sleep, antibiotics, anti-anxiety, among other things. It seemed like every time I looked at someone wrong I was given something else. It got to a point where I was sure that I was losing my mind, I was mean, I couldn't sleep, my anti-anxiety meds gave me anxiety, and I didn't want to eat. It was everything a PALS DIDN'T need. It got to the point where I would ask every time they came to me with meds to tell me exactly what it was. I know I was not the worlds greatest patient but, I am also a PALS with very special needs. I had an air conditioner in my room and had it on constantly - I was always hot when everyone else was cold. I drove Laura and the nurses crazy asking to adjust it higher and lower. As an advocate, make sure you ask what and why your PALS is getting the drug and how it affects ALS. Now I am home and only take the medications that are needed and we're sure that work well with my ALS. I'm still a bit grumpy, all things considered, but I am - by far - much closer to being the man Laura knows and loves.
Once again, if you are an advocate for someone, I urge you to learn from our mistakes and start standing up as such from day one. You are not there to make friends - you are there to ensure your loved one is safe. You have the right to say "no" when necessary and ask questions, Demand the care you want and need, and the care that is best for your PALS. If you are told something is a policy, demand to see the policy in writing. We found out that many of the staff make shit up to suit their needs.
I realize this may not be the most popular post because I am bagging on the very people who risk their lives every day to take care of us, but this story had to be told. You need to know that only you can prioritize the care you need, and if my story can help one PALS get the proper care THEY need, then its worth pissing off a few doctors and nurses.
This is so right on! My wife Kathy had to aggressively advocate for our daughter Liz during her labor and delivery of our granddaughter.