Almost every post I add to this blog guts me. Of course, I miss my mother, but I am also overwhelmed with the sweet gifts her life continues to give me. I KNOW she would want you to look at your life through this post in particular. She’s not displaying fearlessness. She’s displaying courage in her trials. She has fear but is courageous and proactive in her endeavors because she has nothing to lose. Her highest goal was to love others in Christ and, in her bossy way, ask you, “How can you be courageous in your trial today?”
*My Mom did have the Suprapubic Catheter surgery, and it freed up lots of time for her to be around the people she loved. As you will learn in blog posts to come, the catheter also opened the door for some pretty funny stories.
Tricia
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It is hard to believe but I think I am becoming a crusader and stirring things up in the ALS community. When ALS hits it takes away muscle strength which affects walking, talking, breathing and swallowing, this makes many/most/all things difficult and eventually impossible.
Due to the muscle weakness in my legs, I am unable to use public restrooms. Therefore, my whole life revolves around blocks of time, usually two to three hours, when I can be gone from home. This means a movie or dinner, not a movie and dinner. This is very discouraging, overwhelming, and depressing; it is very difficult to accept. I have been on the search for alternatives other than Depends, even though I haven’t ruled it out.
A couple of months ago I ran across an article on Supra Pubic Catheters with ALS patients. A suprapubic catheter is a sterile (germ-free) tube that drains urine out of your bladder. It is inserted through a stoma (created opening) in your abdomen and into your bladder.
Sadly, this sounded like a good idea to me, so I did more investigation and presented it to my ALS doctors. Tricia and Cliff were with me at the time. When the doctor told me absolutely “no” it is not a good idea because of a high infection risk, I could get sepsis and die, we laughed. Really? I do have ALS.
So, I did more research, talked to more people and visited with the Urologist. He was more concerned about the surgery than the potential infection risk. After a lengthy discussion where he presented his concerns and I presented my goal of wanting a productive active life style as long as possible versus a life revolving around bathroom necessities. He agreed and scheduled the outpatient, 20 minute surgery for September 17th.
I have shared this with my ALS Facebook group, it has spurred more women to look into the possibilities. One person already responded that her Urologist said no because of the potential infection issues. My response, give me the antibiotics, I will risk the infection for the next few months or hopefully years in order to be out and about and not stuck in the middle of bathroom dilemmas.
My crusade stems from the fact this procedure along with other options for bathroom challenges were not given to me. The number of ALS women that are knowledgeable of this procedure is minimal. If I had not been searching for options I would not know the Supra Pubic Catheter was something to be considered. If I had not done my homework when talking with the Urologist, I would have walked away with nothing. If I am making a mistake, it is my mistake. I have nothing to lose, but I want the choice.
Susan–