Thankfully, Dr. Dazzle warned me about the grizzly side effects of each and every one of the drugs I've taken and am still taking. We got a baseline hearing and vision tests prior to beginning the Amikacin and I got a follow-up hearing test in December after having experienced occasional ringing and ear discomfort. I got the results from the December test last week. The report reads that "The only abnormality seen was a response at a severe hearing loss level at 12,000 Hz only in the right ear. " This is in the extremely high frequency range. I'm not surprised about this, because all of the ringing and discomfort was in my right ear. Honestly, though, I feel like I got off easy. I barely notice this change to my hearing. The Amikacin stays in the ears for 6 months after treatment is concluded, so I'm not completely out of the woods, yet. However, I have been experiencing far less ringing and discomfort since my treatment ended, so I am very optimistic.
This report and the message from the other patient got me thinking. For me, I would trade "some" of my hearing to keep my lung function. I guess in weighing the two, I conclude that you can live with bad hearing, but bad lungs can kill you. Sometimes it seems like CF is a real-life game of "Would You Rather".
"Would you rather go deaf and save your lungs or keep your hearing and experience lung deterioration?"
My family plays "Would You Rather" all the time, usually at the dinner table. The questions are usually silly and the answers don't have real life implications. "Would you rather eat earwax from a cat or lick between your fathers toes?" I hope to never truly be faced with this dilemma.
However, with all of the side effects and other possible things that can happen as a result of the treatments we need to save our lives, this "Would You Rather" scenario comes up a lot in the daily lives of those with CF. To save our lungs we sometimes end up hurting our kidney's or our liver. Sometimes our eyesight deteriorates and even our teeth can decay. In the case of transplant, sometimes it's a choice between diseases. It really is like treating one disease for another in some respects. The health concerns are different, but they don't diminish after transplant.
Making these "Would You Rather" decisions can be difficult. I think that some of us might even have chosen a different path in hindsight if a very negative consequence is experienced. For me, as far as the hearing was concerned, it was a no brainer. I felt comfortable that things were being monitored and that my lungs needed to be the priority at the time.
I would love to hear of any "Would You Rather" decisions you have had to make...
5 comments:
I make all kinds of decisions like that for my little CF'r. In my personal experience, it is would you rather be really dizzy, or lose the feeling in your legs, or lose your vision, or gain a ton of weight from the steroids to make it all go away. I chose the weight gain and now trying to fight that off. I have MS.
Hello Cyster. I thought I'd share my thoughts on this latest blog of yours.
24 hours after my son was born, I was told he failed his hearing test. Although newborn hearing screening had not been mandated yet, the hospital I had him at was doing it on their own. I didn't think much of it. They told me they would retest after another 24 hours had past, hoping it was just fluid in the middle ear. Well, he failed the test again. So, they asked we bring him for a more thorough test a week later. I did and he failed it again. One more test could be done, and that confirmed...he had about a 50% loss.
I'll never forget that call. I cried. The thought of the hardships he would have to endure saddened me greatly. I immediately started taking sign language classes and learning what to expect in the hard-of-hearing world for my son.
Now, fast forward 6 months. After 2 years of wondering what was going on with my daughter and her health, we get the call that her tests confirmed she had cystic fibrosis. I was devasted and one of the very first things I said was...
"Why couldn't it just be her hearing!"
I have definitely decided against some drugs and for others when it comes to my health. It's another one of those personal decisions. They aren't wrong, they are individual. The only wrong decision is no make a educated decision.
It's also the reason I'm glad we don't see commercials for half the stuff we take. I don't want the side effects told to me by some actor. :-)
Have you ever seen Magnum PI? When trying to open a door quickly to escape the attack dogs running at you, never look at the dogs. Concentrate on opening the door.
I'm crazy. I wish the best for you from a place deep inside me I didn't know existed. And a beam of light is headed your way that will make everything well and kill all the bad bacteria that seem to think you're the best thing since sliced bread. Feel better. Best wishes and health.
Just wanted to say hi...I'm following your blog now. I don't live in Akron, I go to cf clinic there. I live in the Millersburg/Berlin area. My son lived in Medina for a couple of years. What cf clinic do you go to? Looking forward to reading more here...
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