Newly diagnosed 20 yr old

J

JustaCFmom

New member
The doctors say that azithromycin acts as an anti inflammatory in CF, as Liza mentions above. I would like to see him listening more to the doctors. I don't think inhaling hypertonic saline should make him feel weak. I don't know about Pulmozyme; and I know some people DO feel weak from antibiotics.

I don't think my son understands all the issues; and he isn't interested in learning about CF. It is hard as a mom to watch all this. He may be 20, but he is acting more like 13 or so. :)

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Tammy - mom to 3 kids wcf (ages 8,16,20); W1282X/3849+10kb C->T, thankful for this mutation that made the CF "mild"!; Pancreatic Sufficient and hopeful for the boys becoming fathers one day
 
J

JustaCFmom

New member
The doctors say that azithromycin acts as an anti inflammatory in CF, as Liza mentions above. I would like to see him listening more to the doctors. I don't think inhaling hypertonic saline should make him feel weak. I don't know about Pulmozyme; and I know some people DO feel weak from antibiotics.

I don't think my son understands all the issues; and he isn't interested in learning about CF. It is hard as a mom to watch all this. He may be 20, but he is acting more like 13 or so. :)

---------------------------------------
Tammy - mom to 3 kids wcf (ages 8,16,20); W1282X/3849+10kb C->T, thankful for this mutation that made the CF "mild"!; Pancreatic Sufficient and hopeful for the boys becoming fathers one day
 
J

JustaCFmom

New member
Thanks Bill.

Yes, this is all through a CF center in Israel. I was told by some that it is a "top CF clinic". It is a university hospital involved with research. Does that help it's status? The statistics here are all anonymous, so I don't actually know how they rate internationally. I have mentioned it, but they say some of the centers are too small to release info. - it wouldn't be "ethical". (There are about 500+ CF patients here, and some clinics have just a handful.) The statistics are released as "Israel" - national stats.

I saw that Canada is still not releasing specific information about each clinic. England is just starting to be transparent this year.The doctors are afraid, I think. We should be able to pick where we want to be treated, based on honest information. I LOVED this article. It may be 7 years old, but it is REAL.

http://www.newyorker.com/archive/2004/12/06/041206fa_fact?currentPage=all
It's called: The Bell Curve
What happens when patients find out how good their doctors really are?
 
J

JustaCFmom

New member
Thanks Bill.

Yes, this is all through a CF center in Israel. I was told by some that it is a "top CF clinic". It is a university hospital involved with research. Does that help it's status? The statistics here are all anonymous, so I don't actually know how they rate internationally. I have mentioned it, but they say some of the centers are too small to release info. - it wouldn't be "ethical". (There are about 500+ CF patients here, and some clinics have just a handful.) The statistics are released as "Israel" - national stats.

I saw that Canada is still not releasing specific information about each clinic. England is just starting to be transparent this year.The doctors are afraid, I think. We should be able to pick where we want to be treated, based on honest information. I LOVED this article. It may be 7 years old, but it is REAL.

http://www.newyorker.com/archive/2004/12/06/041206fa_fact?currentPage=all
It's called: The Bell Curve
What happens when patients find out how good their doctors really are?
 
P

Printer

Active member
Tammy:

That sounds really good. Just one thing though, Being seen at a Hospital with a CF CLINIC is not the same as being seen at a CF CLINIC by a CF SPECIALIST.

Good luck in trying to help son, he is very lucky to have you as his MOM.
 
P

Printer

Active member
Tammy:

That sounds really good. Just one thing though, Being seen at a Hospital with a CF CLINIC is not the same as being seen at a CF CLINIC by a CF SPECIALIST.

Good luck in trying to help son, he is very lucky to have you as his MOM.
 
M

Melissa75

Administrator
At 20 and feeling great, it is hard to imagine things changing, but they can and do. Even disregarding his CF diagnosis, you said he has mild bronchiectasis. I'm someone who once pinged an fev1 north of 130%, was diagnosed with mild bronchiectasis around 120% and now just a few years later is around 100%, weighs 5 lbs less and cultures CF bugs.

So I'm with thinking he should do everything possible to keep that function, but especially the things that have no side effects, like CPT and exercise.
 
M

Melissa75

Administrator
At 20 and feeling great, it is hard to imagine things changing, but they can and do. Even disregarding his CF diagnosis, you said he has mild bronchiectasis. I'm someone who once pinged an fev1 north of 130%, was diagnosed with mild bronchiectasis around 120% and now just a few years later is around 100%, weighs 5 lbs less and cultures CF bugs.

So I'm with thinking he should do everything possible to keep that function, but especially the things that have no side effects, like CPT and exercise.
 
R

Ratatosk

Administrator
Staff member
I suspect that he's feeling overwhelmed with the diagnosis, overwhelmed with having to take up time with treatments and medications. As a parent, I can remember similar feelings as DS' issues were mostly digestive at first. Unfortunately, CF is a progressive disease and it's important to be proactive and stay on top of things.
 
R

Ratatosk

Administrator
Staff member
I suspect that he's feeling overwhelmed with the diagnosis, overwhelmed with having to take up time with treatments and medications. As a parent, I can remember similar feelings as DS' issues were mostly digestive at first. Unfortunately, CF is a progressive disease and it's important to be proactive and stay on top of things.
 
E

edan

Guest
Hi. Just out of curiosity, what are your son's mutations?
Regarding Israel, hopefully he is being seen at Hadassah Medical Center. Dr. Eitan Kerem, the director there, is a highly regarded doctor. Search his name. He is very involved in the research. I have consulted with him a bit via email and really like him (at least from afar so decide for yourself). I believe his wife has discovered many of the CF genes out there today, so they are VERY involved. Anyway, good luck to you.

Cheers,
Edan.
 
E

edan

Guest
Hi. Just out of curiosity, what are your son's mutations?
Regarding Israel, hopefully he is being seen at Hadassah Medical Center. Dr. Eitan Kerem, the director there, is a highly regarded doctor. Search his name. He is very involved in the research. I have consulted with him a bit via email and really like him (at least from afar so decide for yourself). I believe his wife has discovered many of the CF genes out there today, so they are VERY involved. Anyway, good luck to you.

Cheers,
Edan.
 
G

Gorf

Guest
I was diagnosed at 3, Never really any lung problems till 19, I did my abuterol faithly with the poundings my mom gave me, I truly believe it is why I am here now today to type this, not to say I didn't skip to go camping or other stuff. If I had to say the best time to do it would be mornings to do treatments. Is he posistive for MRSA, Pseudomonas, or another germ? If not then defeniatly see another doc for another opnion. Possibly there is something he did not tell you or you forgot. Live Long and Prosper.
 
G

Gorf

Guest
I was diagnosed at 3, Never really any lung problems till 19, I did my abuterol faithly with the poundings my mom gave me, I truly believe it is why I am here now today to type this, not to say I didn't skip to go camping or other stuff. If I had to say the best time to do it would be mornings to do treatments. Is he posistive for MRSA, Pseudomonas, or another germ? If not then defeniatly see another doc for another opnion. Possibly there is something he did not tell you or you forgot. Live Long and Prosper.
 
B

BikerEd

Guest
Azithromycin, is an antibiotic, but it works more as a commication blocker. Meaning the bugs that grow in the lungs can't shate infromtion as to how to beat and attack the medications we take. HTS made me feel terrible, every tasted bad (overly salty) not good for eating, anmd just in general dragged me down. Just my experiance.

Ed
 
B

BikerEd

Guest
Azithromycin, is an antibiotic, but it works more as a commication blocker. Meaning the bugs that grow in the lungs can't shate infromtion as to how to beat and attack the medications we take. HTS made me feel terrible, every tasted bad (overly salty) not good for eating, anmd just in general dragged me down. Just my experiance.

Ed
 
L

LittleLab4CF

Super Moderator
Welcome JuataCFmom. So after 20 years of worry, doctor, doctor doctor bills and time allocated for doctors you have earned your CF badge. It took three times as long for an indesputable diagnosis. A trusted counselor told me at 18 " you know, you will go a lot further in life if you lose your hypochondria. I bought it until my CF was diagnosed in my 50's

It isn't much, but I, and your son along with all CFers, didn't catch CF, it isn't something that developed at 20. We were born with it, we don't have a reference of when we didn't have it. CF is part, for a lucky few, have relatively mild symptoms, most fall in the center of the bell curve. That lethal part of the curve are those who die right after birth upto the 16 yr old awaiting a double lung transplant.

We are what we are, like a keyhole iris, or green eyes. We know it is part of what we are, we steele against a dead pancreas or chron's disease. No this is not something to be joyful over. We have been given gifts, the equivelent of kingdoms. The loss of one of these priceless gifts and still be indecently rich.
 
L

LittleLab4CF

Super Moderator
Welcome JuataCFmom. So after 20 years of worry, doctor, doctor doctor bills and time allocated for doctors you have earned your CF badge. It took three times as long for an indesputable diagnosis. A trusted counselor told me at 18 " you know, you will go a lot further in life if you lose your hypochondria. I bought it until my CF was diagnosed in my 50's

It isn't much, but I, and your son along with all CFers, didn't catch CF, it isn't something that developed at 20. We were born with it, we don't have a reference of when we didn't have it. CF is part, for a lucky few, have relatively mild symptoms, most fall in the center of the bell curve. That lethal part of the curve are those who die right after birth upto the 16 yr old awaiting a double lung transplant.

We are what we are, like a keyhole iris, or green eyes. We know it is part of what we are, we steele against a dead pancreas or chron's disease. No this is not something to be joyful over. We have been given gifts, the equivelent of kingdoms. The loss of one of these priceless gifts and still be indecently rich.
 
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