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It is NOT a Progression of My ALS!

About four weeks ago, I woke up not being able to pee. I wasn’t too alarmed because I have had days (not often though) when I didn’t need to pee until later in the day. However about 3pm, I realized that it wasn’t an issue of not needing to pee, but it was that I could not pee! My bladder was full, yet my bladder muscles would not release it. By the time Daryl got home from work, I was in a lot of pain if anyone touched my stomach or if I had to be rolled. So, as soon as Daryl walked into the room, I said, “Sorry, but we have to go the ER.” He knew it was serious because I only say we have to go to the ER, which is 1.5 hours away, when the situation is severe.


[I know some of you are thinking why don’t we go to a closer ER. Well, there is a small hospital about 25 minutes away, but they would just send me by ambulance to a bigger hospital because they are not equipped to handle much. Plus, the Chi St. Luke’s hospital in Lufkin, TX has some of the best respiratory therapists, nurses, and doctors, AND, they listen to and let Daryl take the lead on my ventilator, transferring me, etc. They recognize that he is the expert on taking care of me. They also do their best to take care of me, and we trust them. You don’t find that in many places with someone in our situation.]


We finally arrive to the ER close to 9pm, and it is pretty busy. By this time, I am in constant pain from my bladder blowing up about 10 times its normal size. I keep my eyes closed mostly so that I can feel my pain while not enduring everyone staring at me in the waiting room. By this time, I am worried my bladder will burst – if that is a thing.


Eventually, we get taken back for my blood to be drawn. Surprisingly, the guy only had to stick me a couple of times because he listened when we told him that I am a hard stick. Smartly, he brought in an ultrasound to find a vein. Drawing blood for tests was a success; however, the vein refused to work for an IV. Thankfully, the guy decided to hold off on the IV until I saw a doctor.


About 2 hours later, we get into a room, and the transferring discussion begins. The ER does not have a lift, but in the past, they have been able to borrow one from another department. That wasn’t an option this time because it was so late; therefore, they rounded up as many people as they could (I think 6 total) to use the sling under me to transfer me to the bed. At this point, I didn’t care what they did as long as they didn’t touch my stomach! They laid my chair out flat (if you didn’t know, power wheelchairs can raise my legs and flatten my back to where I am completely stretched flat.), raised the arms, moved the bed next to my chair, and lifted me right over! Super fast, easy, and painless. I think we will do it that way if I ever land in the hospital again.


After we get settled in, a lady comes in the room to ultrasound my bladder and kidneys. I looked at Daryl, and he already knew. He told her very nicely that no one could touch my stomach until my bladder was relieved. She didn’t argue at all and just said she understood and would come back. Then, we wait and wait. It probably wasn’t long, but it felt like an eternity since I was in so much pain. Ultimately, Daryl goes out to the nurse’s station to ask about getting me a catheter, and it was a good thing he did because there had been a miscommunication. The nurse thought someone had already taken care of me. She and another nurse quickly get the catheter in, and I have instant relief. I don’t know how much comes out, but they emptied the bag at least two times within minutes.


Pain is completely gone! Nurse asks me if I want the morphine and fluids the doctor prescribed. Nope! I am all good. The lady comes back to do the ultrasound. Kidneys and bladder look great. Blood and urine tests come back negative. No infection! The doctor comes in and says it is a progression of ALS. I will need to go home with the catheter and follow up with a urologist for a permanent solution. I’m bummed but too tired to really process it. So, we load me back in my chair to make the long drive home. We finally get settled in for sleep about 4:30am (poor Daryl had to get up by 6:45am to go to work).


After a few hours of sleep, my mind begins to function better, and I realize the ER never asked me what medications I was taking. They immediately jumped to the problem was a progression of my ALS when the tests looked good. What they didn’t know was that I had started wearing Scopolamine Transdermal Patches a week earlier. My ALS neurologist had prescribed them to help dry up my nasal secretions and saliva that had become excessive. My brain started kicking into overdrive thinking there could be a connection. Sure enough, when I researched side effects, one of them was difficulty passing urine. My hopes shot up, and we decided to immediately stop wearing the patch. I would much rather deal with a constant runny nose and a mouthful of spit over not being able to pee on my own.


We still couldn’t risk that not being the problem, so I kept the catheter until I was able to see the urologist a week later. Fast forward to my appointment (you don’t need the details of my life with the catheter lol) where the doctor begins telling us that I need to let my bladder heal for another week, so the catheter was staying in for another week when he could take it out in his office or we could take it out at home. Then, he prescribed Flomax for me to take to help my bladder muscle relax. If that didn’t work, I would need to start using disposable catheters that someone would have to insert every time I needed to urinate. Ugh! It was another doctor telling me it was a progression of my ALS. I was not having it. I brought up the patches, and he immediately said that could definitely cause the problem. Apparently, it is a common side effect when people take that type of medication but more common in men than women. My hopes lifted! I would still need to have the catheter for a bit longer to heal, but once it came out, we would get our answer.


That was on a Wednesday. The following Saturday, the catheter stopped draining and was becoming painful, so crazy me convinces Daryl to take it out (the doctor said we could!). He was stressed about it, but after researching and watching YouTube videos, we took the leap. I was either going to start peeing on my own or be back in the ER getting a new catheter.


Drum roll please. . .. . . Victory! Catheter out with no problems, and I can pee!!!


It has been a week and a half since, and I have had no more issues. Lesson learned. I won’t be taking anymore medicine to dry up my nose and mouth, and I will no longer let doctors assume my issues are just a progression of my ALS.

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