Newly diagnosed 20 yr old

L

LittleLab4CF

Super Moderator
JustaCFmom, I meant to encourage you and welcome you to our little club. "Printer" is a Sage among the lot and worhy of consideration on anything. At 20, I was sucking life in through a fire hose. I was an over the top rock climber and mountaineer, down hill ski racer cycler and fencer. All I did for my lungs was steam them, really, really good. It isn't though I suffer CF symptoms, this period of my life was mostly GI issues. I nearly die after hypersaline. My pulmo had no problem discovering why. My blood oxygen went way down. That is not to say this is going on. Your son is not alone.
 
L

LittleLab4CF

Super Moderator
JustaCFmom, I meant to encourage you and welcome you to our little club. "Printer" is a Sage among the lot and worhy of consideration on anything. At 20, I was sucking life in through a fire hose. I was an over the top rock climber and mountaineer, down hill ski racer cycler and fencer. All I did for my lungs was steam them, really, really good. It isn't though I suffer CF symptoms, this period of my life was mostly GI issues. I nearly die after hypersaline. My pulmo had no problem discovering why. My blood oxygen went way down. That is not to say this is going on. Your son is not alone.
 
L

LittleLab4CF

Super Moderator
JustaCFmom, Welcome. When I was 20, I sucked life in through a fire hose. Etreme sports not yet on the radar occupied my time. The only thing I did for my lungs was steam, lots of hot steam. Decades later I was given a hypertonic saline treatment. I also felt weak, right after and for a few days. This was done at the CF clinic I go to, in order to determine the efficacy. Your son is not alone.
 
L

LittleLab4CF

Super Moderator
JustaCFmom, Welcome. When I was 20, I sucked life in through a fire hose. Etreme sports not yet on the radar occupied my time. The only thing I did for my lungs was steam, lots of hot steam. Decades later I was given a hypertonic saline treatment. I also felt weak, right after and for a few days. This was done at the CF clinic I go to, in order to determine the efficacy. Your son is not alone.
 
J

JustaCFmom

New member
Thanks for all your input. Our mutations are 3849+10kb C->T & W1282X. The first one is what makes the CF "mild".
Thanks for your encouragement Melissa. I'll mention this to him.
I went to a CF symposium yesterday organized through the CF foundation here. I got to see some of the statistics I wanted to know. That doctor wasn't concerned about "ethics". He just didn't include the small centers. I see what I am up against as far as the bug issues at my clinic. Too much Pseudomonas for my liking.
I don't like the system here of everyone sitting around the waiting room and wish I could change it. The climate here makes it usually uncomfortable to wait outside. I think that's what we'll do anyways.
I am very grateful actually that I didn't have to run around too much (relatively) until we got our diagnosis.

I really don't believe in "Hypochondria" under most circumstances. That's why I am a bit concerned with my son's claim of weakness. Thanks, Ed. Does that mean you don't do the Hypertonic Saline? (This new announcement about HTS not helping young children is very interesting.) I met someone yesterday who had very real side effects from medicine and the doctors didn't believe him. He tried 2 clinics until he settled with Shneider's in Petach Tikvah.

Yes, Edan, we go to Hadassa and are very pleased, overall. I just hope to make more improvements :-D Prof. Kerem is a human giant. He has answered all my emails and is very accessible. It always seems to be that the busiest people have the most time.

Thanks again to everyone!

Tammy
 
J

JustaCFmom

New member
Thanks for all your input. Our mutations are 3849+10kb C->T & W1282X. The first one is what makes the CF "mild".
Thanks for your encouragement Melissa. I'll mention this to him.
I went to a CF symposium yesterday organized through the CF foundation here. I got to see some of the statistics I wanted to know. That doctor wasn't concerned about "ethics". He just didn't include the small centers. I see what I am up against as far as the bug issues at my clinic. Too much Pseudomonas for my liking.
I don't like the system here of everyone sitting around the waiting room and wish I could change it. The climate here makes it usually uncomfortable to wait outside. I think that's what we'll do anyways.
I am very grateful actually that I didn't have to run around too much (relatively) until we got our diagnosis.

I really don't believe in "Hypochondria" under most circumstances. That's why I am a bit concerned with my son's claim of weakness. Thanks, Ed. Does that mean you don't do the Hypertonic Saline? (This new announcement about HTS not helping young children is very interesting.) I met someone yesterday who had very real side effects from medicine and the doctors didn't believe him. He tried 2 clinics until he settled with Shneider's in Petach Tikvah.

Yes, Edan, we go to Hadassa and are very pleased, overall. I just hope to make more improvements :-D Prof. Kerem is a human giant. He has answered all my emails and is very accessible. It always seems to be that the busiest people have the most time.

Thanks again to everyone!

Tammy
 
R

Ratatosk

Administrator
Staff member
Tammy, I have known a few people who use the excuse that they felt better before going on meds or starting treatment. Form of denial? Being overwhelmed about having to do treatments and taking medications.

I had a similar feeling when DS was a baby with one of his medications -- I HATED giving it to him as he'd spit it out right back in my face. Was soooo stressful that I began looking for excuses as to why I shouldn't give it to him -- maybe it was causing a rash, maybe it caused stomach upset and he wouldn't eat. I pushed through, he got used to it and things were fine, but it was just one more thing that almost pushed me over the edge. It wasn't fair that other people got to bring home normal healthy babies and didn't have spend 3-4 times a day doing treatments, medications and feeds every 3 hours.

Could be something similar your son is going through, too. Having to adjust to everything. As for the community waiting room -- we had a similar issue when DS was a baby. Kept our distance, tried not to touch any surfaces -- chairs, used hand sanitizer after touching pens, surfaces. We once walked out of a clinic appointment when we arrived at our designated time and they made us wait for half an hour. After that they made sure to put us in a room immediately or they knew we'd walk.
 
R

Ratatosk

Administrator
Staff member
Tammy, I have known a few people who use the excuse that they felt better before going on meds or starting treatment. Form of denial? Being overwhelmed about having to do treatments and taking medications.

I had a similar feeling when DS was a baby with one of his medications -- I HATED giving it to him as he'd spit it out right back in my face. Was soooo stressful that I began looking for excuses as to why I shouldn't give it to him -- maybe it was causing a rash, maybe it caused stomach upset and he wouldn't eat. I pushed through, he got used to it and things were fine, but it was just one more thing that almost pushed me over the edge. It wasn't fair that other people got to bring home normal healthy babies and didn't have spend 3-4 times a day doing treatments, medications and feeds every 3 hours.

Could be something similar your son is going through, too. Having to adjust to everything. As for the community waiting room -- we had a similar issue when DS was a baby. Kept our distance, tried not to touch any surfaces -- chairs, used hand sanitizer after touching pens, surfaces. We once walked out of a clinic appointment when we arrived at our designated time and they made us wait for half an hour. After that they made sure to put us in a room immediately or they knew we'd walk.
 
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