newbie here

M

Madsmith

New member
Hey all,
Just wanted to say hi and introduce myself.  I've never been on a CF board, hell, I haven't even talked to another CFer since way back at CF camp in the 80's.  I've been pretty lame and avoided CF events fundraisers and etc.  I started thinking I ought to be more involved and that it might be useful to hear about other folks' experience.  So, Hi!
I'm a 36 yo single guy currently living in Florida.  I'm finishing my Doctorate at the Univ of Florida in Biology.  I study the evolution of animal behavior, and I work with birds, horseshoe crabs, and salamanders.  I love teaching, and hopefully will be able to find a job in the next year or two...
I'm fairly healthy, although I had a pretty rough year last year and haven't really gotten back to my old baseline.  I have lots of questions about what folks from other centers do in terms of treatment regimes.  I often wonder if there are some meds that I should be on, why haven't I ever had a cat scan - is this something that lots of people do?  What are these pulmonary physical therapy sessions that I've heard about, etc.  So I'm looking forward to reading all the topics and talking to all of you.
So, yeah, I guess that's me for now.
Matt
 
 
M

Madsmith

New member
Hey all,
Just wanted to say hi and introduce myself. I've never been on a CF board, hell, I haven't even talked to another CFer since way back at CF camp in the 80's. I've been pretty lame and avoided CF events fundraisers and etc. I started thinking I ought to be more involved and that it might be useful to hear about other folks' experience. So, Hi!
I'm a 36 yo single guy currently living in Florida. I'm finishing my Doctorate at the Univ of Florida in Biology. I study the evolution of animal behavior, and I work with birds, horseshoe crabs, and salamanders. I love teaching, and hopefully will be able to find a job in the next year or two...
I'm fairly healthy, although I had a pretty rough year last year and haven't really gotten back to my old baseline. I have lots of questions about what folks from other centers do in terms of treatment regimes. I often wonder if there are some meds that I should be on, why haven't I ever had a cat scan - is this something that lots of people do? What are these pulmonary physical therapy sessions that I've heard about, etc. So I'm looking forward to reading all the topics and talking to all of you.
So, yeah, I guess that's me for now.
Matt
 
M

Madsmith

New member
<p>Hey all,
<p>Just wanted to say hi and introduce myself. I've never been on a CF board, hell, I haven't even talked to another CFer since way back at CF camp in the 80's. I've been pretty lame and avoided CF events fundraisers and etc. I started thinking I ought to be more involved and that it might be useful to hear about other folks' experience. So, Hi!
<p>I'm a 36 yo single guy currently living in Florida. I'm finishing my Doctorate at the Univ of Florida in Biology. I study the evolution of animal behavior, and I work with birds, horseshoe crabs, and salamanders. I love teaching, and hopefully will be able to find a job in the next year or two...
<p>I'm fairly healthy, although I had a pretty rough year last year and haven't really gotten back to my old baseline. I have lots of questions about what folks from other centers do in terms of treatment regimes. I often wonder if there are some meds that I should be on, why haven't I ever had a cat scan - is this something that lots of people do? What are these pulmonary physical therapy sessions that I've heard about, etc. So I'm looking forward to reading all the topics and talking to all of you.
<p>So, yeah, I guess that's me for now.
<p>Matt
<p>
 
B

beleache

New member
Hi Matt & welcome to CF.com !
 I'm glad you decided to stop being lame lol ..  Sounds like you have a full & busy life, good for you !
  I am joni 59 y/o f w/cf .  I live in N.Y. but love to visit fl lol  I was dxd at the ripe young age of 44.  I Married for 21 yrs. , have 4 sons, 2 grandsons & a granddaughter due in june ! I feel truly blessed to have a wonderful family, friends & this site.  CF.com  helped me feel not so alone. Helped me feel like I found a place that I belonged..  I hope you have a similar experience.
 My med list is as follows:Albuterol (neb) Hypertonic Sal (neb)  Pulmocort (neb)  Pulmozyme (neb)  Inhaled Amikasin (neb) this is an antibiotic as I have Mycobacteriem abcessus ..  Advair 250/50 (disk)  .. Nasal Irrigations (for sinus) Flonase (sinus) Creon (enzymes) Acphex (for GI Probs. reflux/gerd) Potassium (for kidney stones)  Calcium (my bones suck too )  Urisodiol (also GI) ABDEKS (cf vitamins)  Singular ..  Arixtra (blood thinner shots) And last but not least ( I think)  Clarithromycin ( long term oral antibiotic  for the myco)  If you ask me how I get through all of this, the answer is God, Family & Friends ..
 As far as the physical therapy , there are some places that offer pulmonary pt via drs orders.  I think this is what you were asking.  I have done this type of program in the past after a hosp stay & found it very helpful..
 I hope I answered some of your questions..  We try to do a chat wednesday evenings 8pm est , if you would care to join in & get to "know" some of us.  Hope to see  you there..
 Take care  <img src="i/expressions/face-icon-small-smile.gif" border="0">  joni
 
B

beleache

New member
Hi Matt & welcome to CF.com !
I'm glad you decided to stop being lame lol .. Sounds like you have a full & busy life, good for you !
I am joni 59 y/o f w/cf . I live in N.Y. but love to visit fl lol I was dxd at the ripe young age of 44. I Married for 21 yrs. , have 4 sons, 2 grandsons & a granddaughter due in june ! I feel truly blessed to have a wonderful family, friends & this site. CF.com helped me feel not so alone. Helped me feel like I found a place that I belonged.. I hope you have a similar experience.
My med list is as follows:Albuterol (neb) Hypertonic Sal (neb) Pulmocort (neb) Pulmozyme (neb) Inhaled Amikasin (neb) this is an antibiotic as I have Mycobacteriem abcessus .. Advair 250/50 (disk) .. Nasal Irrigations (for sinus) Flonase (sinus) Creon (enzymes) Acphex (for GI Probs. reflux/gerd) Potassium (for kidney stones) Calcium (my bones suck too ) Urisodiol (also GI) ABDEKS (cf vitamins) Singular .. Arixtra (blood thinner shots) And last but not least ( I think) Clarithromycin ( long term oral antibiotic for the myco) If you ask me how I get through all of this, the answer is God, Family & Friends ..
As far as the physical therapy , there are some places that offer pulmonary pt via drs orders. I think this is what you were asking. I have done this type of program in the past after a hosp stay & found it very helpful..
I hope I answered some of your questions.. We try to do a chat wednesday evenings 8pm est , if you would care to join in & get to "know" some of us. Hope to see you there..
Take care <img src="i/expressions/face-icon-small-smile.gif" border="0"> joni
 
B

beleache

New member
<p>Hi Matt & welcome to CF.com !
<p>I'm glad you decided to stop being lame lol .. Sounds like you have a full & busy life, good for you !
<p>I am joni 59 y/o f w/cf . I live in N.Y. but love to visit fl lol I was dxd at the ripe young age of 44. I Married for 21 yrs. , have 4 sons, 2 grandsons & a granddaughter due in june ! I feel truly blessed to have a wonderful family, friends & this site. CF.com helped me feel not so alone. Helped me feel like I found a place that I belonged.. I hope you have a similar experience.
<p>My med list is as follows:Albuterol (neb) Hypertonic Sal (neb) Pulmocort (neb) Pulmozyme (neb) Inhaled Amikasin (neb) this is an antibiotic as I have Mycobacteriem abcessus .. Advair 250/50 (disk) .. Nasal Irrigations (for sinus) Flonase (sinus) Creon (enzymes) Acphex (for GI Probs. reflux/gerd) Potassium (for kidney stones) Calcium (my bones suck too ) Urisodiol (also GI) ABDEKS (cf vitamins) Singular .. Arixtra (blood thinner shots) And last but not least ( I think) Clarithromycin ( long term oral antibiotic for the myco) If you ask me how I get through all of this, the answer is God, Family & Friends ..
<p>As far as the physical therapy , there are some places that offer pulmonary pt via drs orders. I think this is what you were asking. I have done this type of program in the past after a hosp stay & found it very helpful..
<p>I hope I answered some of your questions.. We try to do a chat wednesday evenings 8pm est , if you would care to join in & get to "know" some of us. Hope to see you there..
<p>Take care <img src="i/expressions/face-icon-small-smile.gif" border="0"> joni
 
M

musclemania70

New member
<p>Welcome! Glad you joined us. We are here to help each other and learn along the way.
<p>Congrats on finding us!
<p>Female-30's!
 
R

Ratatosk

Administrator
Staff member
Hi Matt! My son is 7 and was diagnosed shortly after he was born. We started doing chest physiotherapy (CPT) on him at about one week of age 4 times a day with albuterol/atrovent nebs. He got a vest when he was a toddler and we do 3 vest treatments for 30 minutes 3 times a day. He also nebulizes pulmozyme once a day and he's on inhaled tobi (antibiotic) twice a day every other month. He's on creon digestive enzymes, Source CF vitamins as well as supplemental A, E and K. He take actigall to keep his liver and gallbladder happy. He's on azithromycin, septra and dicloxicillan for other antibiotics.

He also has some sinus issues -- really thick mucus so his nose never runs -- so we do sinus rinses from time to time.
 
R

Ratatosk

Administrator
Staff member
Hi Matt! My son is 7 and was diagnosed shortly after he was born. We started doing chest physiotherapy (CPT) on him at about one week of age 4 times a day with albuterol/atrovent nebs. He got a vest when he was a toddler and we do 3 vest treatments for 30 minutes 3 times a day. He also nebulizes pulmozyme once a day and he's on inhaled tobi (antibiotic) twice a day every other month. He's on creon digestive enzymes, Source CF vitamins as well as supplemental A, E and K. He take actigall to keep his liver and gallbladder happy. He's on azithromycin, septra and dicloxicillan for other antibiotics.

He also has some sinus issues -- really thick mucus so his nose never runs -- so we do sinus rinses from time to time.
 
R

Ratatosk

Administrator
Staff member
Hi Matt! My son is 7 and was diagnosed shortly after he was born. We started doing chest physiotherapy (CPT) on him at about one week of age 4 times a day with albuterol/atrovent nebs. He got a vest when he was a toddler and we do 3 vest treatments for 30 minutes 3 times a day. He also nebulizes pulmozyme once a day and he's on inhaled tobi (antibiotic) twice a day every other month. He's on creon digestive enzymes, Source CF vitamins as well as supplemental A, E and K. He take actigall to keep his liver and gallbladder happy. He's on azithromycin, septra and dicloxicillan for other antibiotics.
<br />
<br />He also has some sinus issues -- really thick mucus so his nose never runs -- so we do sinus rinses from time to time.
 
M

Mallymookcf

New member
Nice to meet you matt! i love this site..everyone is super helpful and encouraging!! as far as having ct scans done. they are good to have periodically so that when you do get sick and they need to evaluate you by ct scan, you have a previous one to compare it to.  in a ct scan tehy get a much better picture of what is going on than in an xray, especially when trying to see if there are any minor or major changes. i hvae frequent hymoptysis( coughing up blood) so unfortunately i can say i have my fair share of ct scans ( with contrast).  Although it does come in handy when i get sick and they want to know if anything looks worse or better. I also have my sinuses monitored by ct scan. i have chronic sphenoid sinusitus..so they check to see any improvement or worsening every couple years. your job sounds amazing by the way! i love florida too! i have gone vacationing there my whole life, almost on a yearly basis! Welcome to the site! Glad you are here!
Mallory
 
M

Mallymookcf

New member
Nice to meet you matt! i love this site..everyone is super helpful and encouraging!! as far as having ct scans done. they are good to have periodically so that when you do get sick and they need to evaluate you by ct scan, you have a previous one to compare it to. in a ct scan tehy get a much better picture of what is going on than in an xray, especially when trying to see if there are any minor or major changes. i hvae frequent hymoptysis( coughing up blood) so unfortunately i can say i have my fair share of ct scans ( with contrast). Although it does come in handy when i get sick and they want to know if anything looks worse or better. I also have my sinuses monitored by ct scan. i have chronic sphenoid sinusitus..so they check to see any improvement or worsening every couple years. your job sounds amazing by the way! i love florida too! i havegone vacationing there my whole life,almost on a yearly basis! Welcome to the site! Glad you are here!
Mallory
 
M

Mallymookcf

New member
<p>Nice to meet you matt! i love this site..everyone is super helpful and encouraging!! as far as having ct scans done. they are good to have periodically so that when you do get sick and they need to evaluate you by ct scan, you have a previous one to compare it to. in a ct scan tehy get a much better picture of what is going on than in an xray, especially when trying to see if there are any minor or major changes. i hvae frequent hymoptysis( coughing up blood) so unfortunately i can say i have my fair share of ct scans ( with contrast). Although it does come in handy when i get sick and they want to know if anything looks worse or better. I also have my sinuses monitored by ct scan. i have chronic sphenoid sinusitus..so they check to see any improvement or worsening every couple years. your job sounds amazing by the way! i love florida too! i havegone vacationing there my whole life,almost on a yearly basis! Welcome to the site! Glad you are here!
<p>Mallory
 
M

Mallymookcf

New member
oh and by the way, if you are not on hypertonic saline...you should try it out! some people swear by it, while others dont...but for me it is  one of the single greatest things they have came out with in my opinion... who knew something so simple and natural as salt water, could do such amazing things!!
 
M

Mallymookcf

New member
oh and by the way, if you are not on hypertonic saline...you should try it out! some people swear by it, while others dont...but for me it is one of the single greatest things they have came out with in my opinion... who knew something so simple and natural as salt water, could do such amazing things!!
 
M

Mallymookcf

New member
<p>oh and by the way, if you are not on hypertonic saline...you should try it out! some people swear by it, while others dont...but for me it is one of the single greatest things they have came out with in my opinion... who knew something so simple and natural as salt water, could do such amazing things!!
 
J

JORDYSMOM

New member
Hi Matt.  Welcome to our community.  I have a 20 yo son with CF.  I hope you find this site as helpful as I have.  Looking forward to hearing more from you.
 
Stacey
 
J

JORDYSMOM

New member
Hi Matt. Welcome to our community. I have a 20 yo son with CF. I hope you find this site as helpful as I have. Looking forward to hearing more from you.

Stacey
 
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