New Member Looking for Support

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Bennny

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Well this is my first post so I guess I should start off with a little about myself. My name is Ben, i'm 26 years old and living in Texas. I was born with Cystic Fibrosis and when I was a Sophmore in high school I became very ill. I took several intravenous drugs that had major side effects, but at the time were considered a last resort. Vancomyicin was the drug that ultimately took 70 percent of my hearing away. I am now completely tone deaf with higher pitch noises and this has caused problems with word recognition. CF has caused a lot of issues in my life, but the hearing loss in high school was a major blow. I have diabetes that is related to CF as well...so when I was diagnosed with being legally deaf at the age of 17 there was a whirlwind of emotion going on. I seemed to be 17 going on 80.

Fast forward to present day: I have graduated from the top university in Texas (Texas A&M!), I am engaged to the woman of my dreams, and my health has been stable. However, last week my Fiance and I went to the hospital to see about getting newer hearing aids and my doctor conducted an Audiogram. The results showed that I had lost even more hearing (it had been 6 years since I had been off the Vancomycin and had a test done). I was upset to say the least. We aren't sure what caused the hearing loss to progress, but if history is going to repeat itself I will be 100 percent deaf in another 6 years. I am on very strong antibiotics from time to time and I think this, along with being in college and going to concerts, riding motorcycles, etc. caused more damage. I am now very VERY careful about my ears, but realize there are some battles that cannot be won. Most IV meds that the bacteria in my lungs are sensitive to have the hearing loss side effect and there is no getting around it. My Fiance and I will be looking to learn sign language this year, as well as finding out more about living life without hearing.

I found this forum by searching for an answer (using google) to a question I had when I found out I would more than likely end up deaf before I was 30. That question was whether or not those that were deaf were still legally allowed to drive (This was my main concern after the last Audiogram)? This forum seems like a very supportive site and I look forward to becoming a part of the community. I guess what I am really here for is to get a feel for how life is going to be without my hearing. I'm no stranger to overcoming obstacles, but losing my hearing completely is a scary thought. Thank you in advance for the advice and support!!
 
People who are deaf can drive. Probably safer drivers than those who play music loudly. Texas A&M? I went to Texas Tech for two years. :P

Read this thread, read the forums, and so forth. There is a difference between "legally deaf" and legally blind. Many deaf/hard of hearing can do the same things as hearing people except hear. That's it.
http://www.alldeaf.com/our-world-our-culture/62953-adjustment-late-onset-deafness.html
 
KikLove said:
People who are deaf can drive. Probably safer drivers than those who play music loudly. Texas A&M? I went to Texas Tech for two years. :P

Read this thread, read the forums, and so forth. There is a difference between "legally deaf" and legally blind. Many deaf/hard of hearing can do the same things as hearing people except hear. That's it.
http://www.alldeaf.com/our-world-our-culture/62953-adjustment-late-onset-deafness.html
Click to expand...

This is correct on what you write, except for one thing when you mention "except hear". You have to say "except they can not hear" which is the proper explaination.

Absolutely, Many d/Deaf and Hard Of Hearing (HOH) can do anything just like hearing normal (able bodied) people except they can not hear. :)
 
Abelusca said:
So...you can hear with a new hearing aid? Or no?
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I will not be able to hear better with new hearing aids. When I first set up the appointment to do the hearing test I had no idea my hearing loss had progressed. My hope was that I was going to take the test, then simply submit that info to insurance and get new hardware. Sadly that was not the case.
 
KikLove said:
People who are deaf can drive. Probably safer drivers than those who play music loudly. Texas A&M? I went to Texas Tech for two years. :P

Read this thread, read the forums, and so forth. There is a difference between "legally deaf" and legally blind. Many deaf/hard of hearing can do the same things as hearing people except hear. That's it.
http://www.alldeaf.com/our-world-our-culture/62953-adjustment-late-onset-deafness.html
Click to expand...

So you went to Tech...do you live in Texas? Thank you for linking me to that thread. I will read up on as much information as I can to better educate myself on what is to come.
 
You have cystic fibrosis and being deaf worries you?
 
hey there, welcome to AD! I am pretty much like you at the moment (see my signature)
 
Deaf since birth and have an impeccable driving record.
 
I have been driving for a long time since 1970. There is nothing to be ashame of being deaf. You just going to have to learn to adapt or adjust to your hearing loss. If hearing aid can not help you, then you have to learn to live with it unless you are thinking of getting CI. CI is surgery that can be risky unless you can be brave and take the challenge of going under the knife. Being deaf is not that bad.

:welcome: to AllDeaf Forum. See you around here. :wave:
 
Bottesini said:
You have cystic fibrosis and being deaf worries you?
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I'm not sure how to take this. I was born with CF and have had 26 years to cope with it. Going deaf is new to me, and I am simply learning to accept this reality.

Sarfarigirl2011 said:
hey there, welcome to AD! I am pretty much like you at the moment (see my signature)
Click to expand...

Thanks!

shel90 said:
Deaf since birth and have an impeccable driving record.
Click to expand...

This made me laugh. I'm glad to hear it! I didn't want to put my Fiance out by having to drive me everywhere if I was going to lose my license. Ignorance is not knowing better and that is why I am educating myself in every way that I can.

Bebonang said:
I have been driving for a long time since 1970. There is nothing to be ashame of being deaf. You just going to have to learn to adapt or adjust to your hearing loss. If hearing aid can not help you, then you have to learn to live with it unless you are thinking of getting CI. CI is surgery that can be risky unless you can be brave and take the challenge of going under the knife. Being deaf is not that bad.

:welcome: to AllDeaf Forum. See you around here. :wave:
Click to expand...

I have heard about CI's. I have had lots of surgeries due to Cystic Fibrosis so I am not new to going under the knife. I do, however, like to exhaust all other options before doing so. I figure I will cross that bridge when I get to it. I appreciate your input. I'm going to take everything in stride and learn to adjust the best I can.
 
Bennny said:
I'm not sure how to take this. I was born with CF and have had 26 years to cope with it. Going deaf is new to me, and I am simply learning to accept this reality.
Click to expand...

Really? CF gives you an average lifespan of 38 years.

Being deaf never hurt anyone.

If it were me, I would be worrying a lot more about how to obtain more years of life than a simple inconvenience .
 
Oh, and before you get too upset about my harshness, I am living with a fairly advanced stage of congestive heart failure, and it certainly worries me more than not hearing.
 
Big hello Ben.
uh ......stick around, where not all as hostile as some.......
(sips drink, lights cigarette, exhales)
 
Bottesini said:
Really? CF gives you an average lifespan of 38 years.

Being deaf never hurt anyone.

If it were me, I would be worrying a lot more about how to obtain more years of life than a simple inconvenience .
Click to expand...

The average lifespan of a person living with CF is in the early 40's. As I am trying to educate myself on a subject I am ignorant on, maybe you should do the same. Here is a link to the cff.org website with information regarding the disease: About CF: Causes, Signs & Symptoms of Cystic Fibrosis | CF Foundation

Bottesini said:
Oh, and before you get too upset about my harshness, I am living with a fairly advanced stage of congestive heart failure, and it certainly worries me more than not hearing.
Click to expand...

No need to apologize for an opinion. However, you seem very uneducated when it comes to Cystic Fibrosis and all it entails. There are many, MANY different strands of CF and I have two Delta F508 genes. This is a far less serious strand of the disease and my current life expectancy based off scar tissue in my lungs is in the 60's. I have learned to live with CF and have a great outlook on life. Some seem to be more pessimistic than others regarding anything that has to do with.....anything.

hoichi said:
Big hello Ben.
uh ......stick around, where not all as hostile as some.......
(sips drink, lights cigarette, exhales)
Click to expand...

Thanks! I really do appreciate it.
 
Bebonang said:
This is correct on what you write, except for one thing when you mention "except hear". You have to say "except they can not hear" which is the proper explaination.

Absolutely, Many d/Deaf and Hard Of Hearing (HOH) can do anything just like hearing normal (able bodied) people except they can not hear. :)
Click to expand...

:giggle: Stupid typos, thanks. :)
 
Bennny said:
No need to apologize for an opinion. However, you seem very uneducated when it comes to Cystic Fibrosis and all it entails. There are many, MANY different strands of CF and I have two Delta F508 genes. This is a far less serious strand of the disease and my current life expectancy based off scar tissue in my lungs is in the 60's. I have learned to live with CF and have a great outlook on life. Some seem to be more pessimistic than others regarding anything that has to do with.....anything.



Thanks! I really do appreciate it.
Click to expand...
I wasn't apologizing, I was just giving you an explanation of why I was curious . And nothing wrong at all with wanting to educate yourself.

You can certainly do that here.
 
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