I am seeing so many people post about their lung function. I see that some people have a lung function of 125%. Others say they have almost perfect function at 97%. Does anyone have any information on how this works? My son in law has a lung function of 71 and is 21 years old. How does that relate to non cf lung function? Thanks for your help!
Lung Function
Help needed with info about CF
I am putting together a video for our 15th Annual CF Valentines Gala, and was hoping to get some input from soem of you in this forum. I do not have CF, however, I am very involved with our local chapter and with various events throughout our area.
Through this video, I would like to show how things have changed from the time our Gala started in 2001 to how things are now in 2015 for patients, friends, parents, grandparents, etc.
What has changed for you in teh last 14 years that you feel an audience of 700 should know about?
Thank you in advance for helping me out. Once I complete the video, I would love to share it with all of you.
FriendofCF Forever
Help needed with info about CF
Through this video, I would like to show how things have changed from the time our Gala started in 2001 to how things are now in 2015 for patients, friends, parents, grandparents, etc.
What has changed for you in teh last 14 years that you feel an audience of 700 should know about?
Thank you in advance for helping me out. Once I complete the video, I would love to share it with all of you.
FriendofCF Forever
Cfpaf
Yikes, I just received this email from the Cystic Fibrosis Patient Assistance Foundation. Comes as quite a surprise that they are shutting down at the end of the year. I briefly looked at the Healthwell website to check out the guidelines and see what meds they provide assisance with, but it doesn't even show CF as a covered disease. It's a little concerning, how will this Healthwell agency cover the influx of CF patients? I'm guessing somehow the CFF will be funneling money there as opposed to the CFPAF. Hmmmm.. I hoping the assistance remains the same for those of us who use it. I wonder what government regulations they are referring to that led to this. The CFPAF and all the people there have been wonderful to me for the last few years, so this is a bit of a bummer. :(
Dear Autumn:
Thank you for your continued participation in the Cystic
Fibrosis Patient Assistance Foundation (CFPAF) co-pay program. We’re writing
today to share some important news. As a result of new government regulations,
we are closing CFPAF at the end of the year to ensure that the Cystic Fibrosis
Foundation (CFF) continues to meet the highest standards.
We know this news
comes unexpectedly. CFF cares about your health and well-being and will help
transition you to a high-quality, nonprofit financial support program, offered
by the HealthWell Foundation®. We are committed to a transition with no
disruption or “gap” in your financial support.
HealthWell’s benefits include
co-payment and co-insurance assistance for CF therapies and prescribed vitamins
and supplements. Simplified annual enrollment at HealthWell means that you can
enroll more quickly with less paperwork. CFF will contribute annually to support
patient assistance.
Although CFPAF is closing, CFF remains committed to
helping you with your financial and insurance issues and providing you with
legal information.
To allow CFF to smoothly transition your enrollment to the
HealthWell Foundation®, please click the link below to print, sign and return
the authorization form by October 15,
2015.
http://ift.tt/1KLSdwF
The
authorization form may be faxed (877-868-5952), emailed (parc@cff.org) or sent
via mail to:
CFPAF
6931 Arlington Rd, Ste 200
Bethesda, MD 20814
We have
also sent you a hard copy of this letter to the home address we have on file for
you with a self-addressed, stamped envelope.
If you have any questions on
this transition, please reach out to one of our dedicated, knowledgeable case
managers at 888-315-4154 or email us at parc@cff.org Monday – Friday from 8:30
a.m. to 5:30 p.m. ET.
Thank you again for your participation in
CFPAF.
Sincerely,
Cystic Fibrosis Patient Assistance Foundation
Cfpaf
Dear Autumn:
Thank you for your continued participation in the Cystic
Fibrosis Patient Assistance Foundation (CFPAF) co-pay program. We’re writing
today to share some important news. As a result of new government regulations,
we are closing CFPAF at the end of the year to ensure that the Cystic Fibrosis
Foundation (CFF) continues to meet the highest standards.
We know this news
comes unexpectedly. CFF cares about your health and well-being and will help
transition you to a high-quality, nonprofit financial support program, offered
by the HealthWell Foundation®. We are committed to a transition with no
disruption or “gap” in your financial support.
HealthWell’s benefits include
co-payment and co-insurance assistance for CF therapies and prescribed vitamins
and supplements. Simplified annual enrollment at HealthWell means that you can
enroll more quickly with less paperwork. CFF will contribute annually to support
patient assistance.
Although CFPAF is closing, CFF remains committed to
helping you with your financial and insurance issues and providing you with
legal information.
To allow CFF to smoothly transition your enrollment to the
HealthWell Foundation®, please click the link below to print, sign and return
the authorization form by October 15,
2015.
http://ift.tt/1KLSdwF
The
authorization form may be faxed (877-868-5952), emailed (parc@cff.org) or sent
via mail to:
CFPAF
6931 Arlington Rd, Ste 200
Bethesda, MD 20814
We have
also sent you a hard copy of this letter to the home address we have on file for
you with a self-addressed, stamped envelope.
If you have any questions on
this transition, please reach out to one of our dedicated, knowledgeable case
managers at 888-315-4154 or email us at parc@cff.org Monday – Friday from 8:30
a.m. to 5:30 p.m. ET.
Thank you again for your participation in
CFPAF.
Sincerely,
Cystic Fibrosis Patient Assistance Foundation
Elastase Test--- with or without enzymes??
mardi 29 septembre 2015
My son's GI ordered his first fecal elastase 1 test today. He has been on enzymes for a few years as an "experiment" to see if they would help his constipation & promote weight gain, but he's never been given a dx of either PS or PI. The GI said that we should stop the enzymes for about a week before the test so the results will be accurate. From what I've read online the enzymes won't affect the test, but I would hope that the Dr. knows what she's talking about. What have you done before collecting a sample? Should I stop giving him enzymes? Thanks!
Elastase Test--- with or without enzymes??
Freebies
I have LOTS (100?) of disposable, sealed in the package, nebulizers for inhalation treatments.
All have the 7 foot hose, and mouthpiece.
They are mostly the acorn, generic kinds but there are some larger 10 cc nebs for things like Colistin that has a larger volume and foams some.
They are the green HUDSON II (2) Updraft nebs up for free.
Also, 10 boxes of 100 One Touch Ultrasoft WHITE color LANCETS for pricking your finger for a blood glucose reading.
100 sterile lancets per box.
The box says:
For use with all OneTouch Penlet & OneTouch UltraSoft brand automatic blood samplers from LifeScan, and most other blood sampling devices.
You PayPal me for the shipping from the East Coast and I’ll send them cheapest cost via the Post office.
Email me…..
lori@morrishughes.com
Freebies
All have the 7 foot hose, and mouthpiece.
They are mostly the acorn, generic kinds but there are some larger 10 cc nebs for things like Colistin that has a larger volume and foams some.
They are the green HUDSON II (2) Updraft nebs up for free.
Also, 10 boxes of 100 One Touch Ultrasoft WHITE color LANCETS for pricking your finger for a blood glucose reading.
100 sterile lancets per box.
The box says:
For use with all OneTouch Penlet & OneTouch UltraSoft brand automatic blood samplers from LifeScan, and most other blood sampling devices.
You PayPal me for the shipping from the East Coast and I’ll send them cheapest cost via the Post office.
Email me…..
lori@morrishughes.com
Freebies.........
I have LOTS (100?) of disposable, sealed in the package, nebulizers for inhalation treatments.
All have the 7 foot hose, and mouthpiece.
They are mostly the acorn, generic kinds but there are some larger 10 cc nebs for things like Colistin that has a larger volume and foams some.
They are the green HUDSON II (2) Updraft nebs..for free.
Also, 10 boxes of 100 One Touch Ultrasoft WHITE color LANCETS for pricking your finger for a blood glucose reading.
100 sterile lancets per box.
The box says:
For use with all OneTouch Penlet & OneTouch UltraSoft brand automatic blood samplers from LifeScan, and most other blood sampling devices.
You PayPal me for the shipping from the East Coast and I’ll send them cheapest cost via the Post office.
Email me…..
lori@morrishughes.com
Freebies.........
All have the 7 foot hose, and mouthpiece.
They are mostly the acorn, generic kinds but there are some larger 10 cc nebs for things like Colistin that has a larger volume and foams some.
They are the green HUDSON II (2) Updraft nebs..for free.
Also, 10 boxes of 100 One Touch Ultrasoft WHITE color LANCETS for pricking your finger for a blood glucose reading.
100 sterile lancets per box.
The box says:
For use with all OneTouch Penlet & OneTouch UltraSoft brand automatic blood samplers from LifeScan, and most other blood sampling devices.
You PayPal me for the shipping from the East Coast and I’ll send them cheapest cost via the Post office.
Email me…..
lori@morrishughes.com
CF or asthama?
dimanche 27 septembre 2015
So, DS for a couple weeks kept clearing his throat but not really coughing more and not sick...then had a nasty coughing spell after exercising (and also I realized the house was horribly dusty). Dust, vacuumed, and upped his Xopenex to 3x a day, but that's it. Cough had gone away and after the extra dose he hasn't coughed (other than a random passing one and not harsh at all), and the throat clearing has gone almost entirely too. Is that an asthama thing? Or with CF would a cough and throat clearing go away like that with nothing but just adding a Xopenex (no vest, no antibotics, etc?) (It could just be the dust which is a reminder to me to be more on top of it!)
Thanks!
CF or asthama?
Thanks!
daily activities for folks that have PFTs in 30's and 40's?
I was just wondering what you all do in your daily lives when your PFTs start hitting the 30-40 percentile? Mine have dropped in this area and have finally had to step away from work because I am just to exhausted, so would love to hear what daily activities you guys do if you could share.
daily activities for folks that have PFTs in 30's and 40's?
Buy reduced generics no medicament
vendredi 25 septembre 2015
cialis pills canada you have posted in this thread generic cialis cialis information uk knowledge base generic cialis - alternative cialis cialis soft tab
Buy reduced generics no medicament
Obamacare and Orkambi
Hi everyone! I am turning 26 in february (I'm off parents insurance) and wanted to know if anyone is on Obamacare and can still get Orkambi? I am having a lot of success with it. Additionally, is anyone on Obamacare and getting covered for pulmozyme, enzymes, TOBI podhaler?
Obamacare and Orkambi
Obamacare and Orkambi
Hi everyone! I am turning 26 in february (I'm off parents insurance) and wanted to know if anyone is on Obamacare and can still get Orkambi? I am having a lot of success with it. Additionally, is anyone on Obamacare and getting covered for pulmozyme, enzymes, TOBI podhaler?
Obamacare and Orkambi
Obamacare and Orkambi
Hi everyone! I am turning 26 in february (I'm off parents insurance) and wanted to know if anyone is on Obamacare and can still get Orkambi? I am having a lot of success with it. Additionally, is anyone on Obamacare and getting covered for pulmozyme, enzymes, TOBI podhaler?
Obamacare and Orkambi
CF Bowel Obstruction Study
Hello All! I wanted to post about a new study we are currently recruiting for if you have CF and are prone to bowel obstructions!
Study: Osteopathic Manipulative Medicine and CF-Related Bowel Obstruction
Goal of StudyStudy: Osteopathic Manipulative Medicine and CF-Related Bowel Obstruction
This study focuses on cystic fibrosis patients who have complaints of bowel obstruction and constipation. The goal of this study is to see if and how osteopathic manipulative medicine will affect these patients’ bowel functions. The study is being performed through Touro University. Treatments will take place in Vallejo, CA and in Portola Valley, CA.
What is osteopathic manipulative medicine?
Osteopathic manipulative medicine (OMM) is a hands-on technique of moving and mobilizing tissues of the body to be able to function optimally. In this project, the techniques that will be utilized are gentle and will be working with the movement of the spine and pelvis, the abdominal tissues and organs, as well as the soft tissues of the back.
Potential Risks and Benefits:
OMM has very minimal risks associated with it. There is a chance of transient discomfort for 24-72 hours. You may have an improvement in body and abdominal pain. You may experience an increase in bowel movements and flatulence, however this is not guaranteed.
Study Design:
• You will be asked to complete a weekly diary of bowel movements for the duration of the study.
• You will receive a weekly email reminder and the diary entries can be submitted by email or postal mail.
• You will be treated a total of four times by an osteopathic physician located in Vallejo, CA.
• This study will last for 9-10 months. After each visit you will receive $40 compensation for traveling and for being compliant with the diary entries until that point. A final payment of $40 will be given after completing the study for a total of $200.
Confidentiality:
Any identifying information will be removed from the data collected for the duration of the study and any public presentation of this information will be completely de-identified.
You are free at any time to withdraw from the study.
If you have any questions or would like to enroll in the study, please contact Sara Modlin at sara.modlin@tu.edu or (925) 456-4519.
First step for EU access for Orcambi; 2-5 for gating for Kalydeco
http://ift.tt/1VeUAej
For our friends across the ocean. Only a first step, I know, but Godspeed in getting the drugs soon.
First step for EU access for Orcambi; 2-5 for gating for Kalydeco
For our friends across the ocean. Only a first step, I know, but Godspeed in getting the drugs soon.
So confused....no diagnosis...stop looking?
jeudi 24 septembre 2015
Looking for confirmation my 8 year old daughter doesn't have cf. Wondering what is going on. Has environmental allergies (as shown on skin tests 2x). Diagnosed with asthma 2 yrs ago due to cough...no wheeze ever. Last school year had bacterial pneumonia in Sept (x-ray at er) and bacterial pneumonia in May (2 night hosp stay). Possible pneumonia in mid June...treated but no x-ray. In past has seen GI for possible reflux and genetics b/c she didn't sweat. Sweating has slowly started and they think possible connective tissue disorder.
Recurrent pneumonias have lead to numerous tests. She's been doing really well since increasing her advair....hardly any cough ever and much less wet/gunkiness in voice on daily basis.
She's had CT of lungs...clear. Sweat chloride test...low and not even close to borderline. Tested for trachea-esophageal fistula...clear. Swallow study...saw some liquids slow to clear but weren't worried. Scope at ENT...saw secretions around vocal cords but otherwise looked good. GI and pulm did scopes together....endoscopy normal--no signs of reflux or food allergies/celiac, pulm saw a lot of thick, sticky mucus and scope kept getting stuck in mucus. Cilia structually good (couldn't test fuction at this hosp). Found some bacteria or something likely from nose. Did methacholine challenge and found no asthma but lowish oxygen at the appt. During all of this, she had no symptoms. No symptoms but full of mucus and low-ish oxygen. So, giving 3 week course of strong antibiotic. If she has no symptoms but has all of this mucus and stuff during scope how do we know if it's always there and when it may become a problem again? She's taking allegra, singulair, flonase, advair, albuterol as needed and recently started using acapella (do huff coughs but not making her cough at all and doesn't sound gunky).
When do you stop looking and think maybe it was just a rough year? Or, do we owe it to our child to keep pursuing this? I hate putting her through all of these tests if there isn't anything to be found, but what if there is something? A friend told me how rarely people can have cf with normal sweat test. DDs pulm said we know she doesn't have cf. Her geneticist said her weight is good...sure doesn't look like cf. Yes, her weight has always been solid around 50%ile. Used to be 90 for height but now down to around 30%ile. After all of this testing, geneticist said they'll see if our insurance covers whole exome sequencing and then we can talk about possibly doing that. Wondering if that diagnoses that rare form of cf.
I guess main questions are, would you stop digging and enjoy her being asymptomatic right now? Anything jump out as being odd and that should be looked at further?
Thank you!
So confused....no diagnosis...stop looking?
Recurrent pneumonias have lead to numerous tests. She's been doing really well since increasing her advair....hardly any cough ever and much less wet/gunkiness in voice on daily basis.
She's had CT of lungs...clear. Sweat chloride test...low and not even close to borderline. Tested for trachea-esophageal fistula...clear. Swallow study...saw some liquids slow to clear but weren't worried. Scope at ENT...saw secretions around vocal cords but otherwise looked good. GI and pulm did scopes together....endoscopy normal--no signs of reflux or food allergies/celiac, pulm saw a lot of thick, sticky mucus and scope kept getting stuck in mucus. Cilia structually good (couldn't test fuction at this hosp). Found some bacteria or something likely from nose. Did methacholine challenge and found no asthma but lowish oxygen at the appt. During all of this, she had no symptoms. No symptoms but full of mucus and low-ish oxygen. So, giving 3 week course of strong antibiotic. If she has no symptoms but has all of this mucus and stuff during scope how do we know if it's always there and when it may become a problem again? She's taking allegra, singulair, flonase, advair, albuterol as needed and recently started using acapella (do huff coughs but not making her cough at all and doesn't sound gunky).
When do you stop looking and think maybe it was just a rough year? Or, do we owe it to our child to keep pursuing this? I hate putting her through all of these tests if there isn't anything to be found, but what if there is something? A friend told me how rarely people can have cf with normal sweat test. DDs pulm said we know she doesn't have cf. Her geneticist said her weight is good...sure doesn't look like cf. Yes, her weight has always been solid around 50%ile. Used to be 90 for height but now down to around 30%ile. After all of this testing, geneticist said they'll see if our insurance covers whole exome sequencing and then we can talk about possibly doing that. Wondering if that diagnoses that rare form of cf.
I guess main questions are, would you stop digging and enjoy her being asymptomatic right now? Anything jump out as being odd and that should be looked at further?
Thank you!
United health care grant (helps with expenses)
mercredi 23 septembre 2015
I hear this on the radio today. So I thought I'ld post this. I have no affiliation with them. Thought if it could help someone it would be useful.
http://ift.tt/1jaCOwM
United health care grant (helps with expenses)
http://ift.tt/1jaCOwM
Insurance for Orkambi (GA)
Any Georgia residents on Orkambi via insurance? I am looking to sign up for Obamacare in a few months, so any experiences (bad/good) with GA carriers would be super helpful. Thanks!
Insurance for Orkambi (GA)
Achromobacter denitrificans
Hello Group
I was just in the hospital for the first time in 5 years. I use to culture Pseudo but it has been gone for about 5 years. I have also cultured Achromobacter Xylosoxidans since 1992 or so. This time i cultured Achromobacter denitrificans. After some research it seems this is not a nice bug and that it is rare. I know that when I first cultured Xylosoxidans I was also told that is was very very rare.
Has anybody cultured this other bug? I am wondering if it was a mistake or if maybe it has always been misidentified. I do not know but, it is weird that I did not culture Xylosoxidans at all. only the new bug and Staph A (MSSA).
Thank you everyone for your insight!
Achromobacter denitrificans
I was just in the hospital for the first time in 5 years. I use to culture Pseudo but it has been gone for about 5 years. I have also cultured Achromobacter Xylosoxidans since 1992 or so. This time i cultured Achromobacter denitrificans. After some research it seems this is not a nice bug and that it is rare. I know that when I first cultured Xylosoxidans I was also told that is was very very rare.
Has anybody cultured this other bug? I am wondering if it was a mistake or if maybe it has always been misidentified. I do not know but, it is weird that I did not culture Xylosoxidans at all. only the new bug and Staph A (MSSA).
Thank you everyone for your insight!
Please Take A Moment To Read
mardi 22 septembre 2015
Hi everyone,
I have a big request for all of you! If you could please take a couple minutes to read this thread I would greatly appreciate it.
I am currently a senior in high school and in order to graduate I have to create a senior project that relates to something powerful in my life. I think most of us can agree on that fact that CF is one of the most impacting/ powerful things in our lives. I want to create a book filled with writings from you guys. I want us to be able to share our story, our CF journey. I'm reaching out to all of you, asking you to do one thing for me. Please write to me. I want to know how CF has impacted all of your lives. Be as creative with this as you want to be. Send me a poem, a letter,or a drawing. Write me a sentence if that's all you have time for. Please keep in mind that this can either be anonymous, signed with your initials, or age. You can send in your stories/poems/drawings through this forum or email it to me at: sheilaaa14191@gmail.com. Once I get enough responses, I will take all the material you guys have sent me, have a hard cover book made, and present it to my school. If you are interested in getting a copy of the book at the end, let me know. This project if very meaningful to me. I've always been the type of person to hide the fact that I have CF, but I'm hoping that with this project, I'll be able to express that side of me. Thank you all so much for your time. If you have any questions regarding this project please feel free to ask me. I look forward to hearing from you.
Much love, Sheila
Please Take A Moment To Read
I have a big request for all of you! If you could please take a couple minutes to read this thread I would greatly appreciate it.
I am currently a senior in high school and in order to graduate I have to create a senior project that relates to something powerful in my life. I think most of us can agree on that fact that CF is one of the most impacting/ powerful things in our lives. I want to create a book filled with writings from you guys. I want us to be able to share our story, our CF journey. I'm reaching out to all of you, asking you to do one thing for me. Please write to me. I want to know how CF has impacted all of your lives. Be as creative with this as you want to be. Send me a poem, a letter,or a drawing. Write me a sentence if that's all you have time for. Please keep in mind that this can either be anonymous, signed with your initials, or age. You can send in your stories/poems/drawings through this forum or email it to me at: sheilaaa14191@gmail.com. Once I get enough responses, I will take all the material you guys have sent me, have a hard cover book made, and present it to my school. If you are interested in getting a copy of the book at the end, let me know. This project if very meaningful to me. I've always been the type of person to hide the fact that I have CF, but I'm hoping that with this project, I'll be able to express that side of me. Thank you all so much for your time. If you have any questions regarding this project please feel free to ask me. I look forward to hearing from you.
Much love, Sheila
Please Take A Moment To Read
Hi everyone,
I have a big request for all of you! If you could please take a couple minutes to read this thread I would greatly appreciate it.
I am currently a senior in high school and in order to graduate I have to create a senior project that relates to something powerful in my life. I think most of us can agree on that fact that CF is one of the most impacting/ powerful things in our lives. I want to create a book filled with writings from you guys. I want us to be able to share our story, our CF journey. I'm reaching out to all of you, asking you to do one thing for me. Please write to me. I want to know how CF has impacted all of your lives. Be as creative with this as you want to be. Send me a poem, a letter,or a drawing. Write me a sentence if that's all you have time for. Please keep in mind that this can either be anonymous, signed with your initials, or age. You can send in your stories/poems/drawings through this forum or email it to me at: sheilaaa14191@gmail.com. Once I get enough responses, I will then take all the material you guys have sent me, I will have a hard copy book made and present it to my school. If you are interested in getting a copy of the book at the end, let me know. This project if very meaningful to me. I've always been the type of person to hide the fact that I have CF, but I'm hoping that with this project, I'll be able to express that side of me. Thank you all so much for your time. If you have any questions regarding this project please feel free to ask me. I look forward to hearing from you.
Much love, Sheila
Please Take A Moment To Read
I have a big request for all of you! If you could please take a couple minutes to read this thread I would greatly appreciate it.
I am currently a senior in high school and in order to graduate I have to create a senior project that relates to something powerful in my life. I think most of us can agree on that fact that CF is one of the most impacting/ powerful things in our lives. I want to create a book filled with writings from you guys. I want us to be able to share our story, our CF journey. I'm reaching out to all of you, asking you to do one thing for me. Please write to me. I want to know how CF has impacted all of your lives. Be as creative with this as you want to be. Send me a poem, a letter,or a drawing. Write me a sentence if that's all you have time for. Please keep in mind that this can either be anonymous, signed with your initials, or age. You can send in your stories/poems/drawings through this forum or email it to me at: sheilaaa14191@gmail.com. Once I get enough responses, I will then take all the material you guys have sent me, I will have a hard copy book made and present it to my school. If you are interested in getting a copy of the book at the end, let me know. This project if very meaningful to me. I've always been the type of person to hide the fact that I have CF, but I'm hoping that with this project, I'll be able to express that side of me. Thank you all so much for your time. If you have any questions regarding this project please feel free to ask me. I look forward to hearing from you.
Much love, Sheila
Please Take A Moment To Read
Hi everyone,
I have a big request for all of you! If you could please take a couple minutes to read this thread I would greatly appreciate it.
I am currently a senior in high school and in order to graduate I have to create a senior project that relates to something powerful in my life. I think most of us can agree on that fact that CF is one of the most impacting/ powerful things in our lives. I want to create a book filled with writings from you guys. I want us to be able to share our story, our CF journey. I'm reaching out to all of you, asking you to do one thing for me. Please write to me. I want to know how CF has impacted all of your lives. Be as creative with this as you want to be. Send me a poem, a letter,or a drawing. Write me a sentence if that's all you have time for. Please keep in mind that this can either be anonymous, signed with your initials, or age. You can send in your stories/poems/drawings through this forum or email it to me at: sheilaaa14191@gmail.com. Once I get enough responses, I will then take all the material you guys have sent me, I will have a hard copy book made and present it to my school. If you are interested in getting a copy of the book at the end, let me know. This project if very meaningful to me. I've always been the type of person to hide the fact that I have CF, but I'm hoping that with this project, I'll be able to express that side of me. Thank you all so much for your time. If you have any questions regarding this project please feel free to ask me. I look forward to hearing from you.
Much love, Sheila
Please Take A Moment To Read
I have a big request for all of you! If you could please take a couple minutes to read this thread I would greatly appreciate it.
I am currently a senior in high school and in order to graduate I have to create a senior project that relates to something powerful in my life. I think most of us can agree on that fact that CF is one of the most impacting/ powerful things in our lives. I want to create a book filled with writings from you guys. I want us to be able to share our story, our CF journey. I'm reaching out to all of you, asking you to do one thing for me. Please write to me. I want to know how CF has impacted all of your lives. Be as creative with this as you want to be. Send me a poem, a letter,or a drawing. Write me a sentence if that's all you have time for. Please keep in mind that this can either be anonymous, signed with your initials, or age. You can send in your stories/poems/drawings through this forum or email it to me at: sheilaaa14191@gmail.com. Once I get enough responses, I will then take all the material you guys have sent me, I will have a hard copy book made and present it to my school. If you are interested in getting a copy of the book at the end, let me know. This project if very meaningful to me. I've always been the type of person to hide the fact that I have CF, but I'm hoping that with this project, I'll be able to express that side of me. Thank you all so much for your time. If you have any questions regarding this project please feel free to ask me. I look forward to hearing from you.
Much love, Sheila
A conversation with my non CF'er
My son is preparing to apply for college soon. He is sorting out what to write for his college essay. He has decided this year that he wants to focus on science; likely start as a Biology major.
He said for his essay he wanted to write about his sister with CF; brainstorming last night. He said he is very interested in genetics because of her. He used the term "Precision Medicine".. I wanted to encourage him to write not just about his sister but about himself..That he has a level of empathy; because of her situation. I actually don't even think he has absorbed all the "emotional" stuff but is moving forward with the intellectual side of being a sibling of someone chronically ill. Anyway, here is some positive stuff from all of this: another kid planning a career in science(course that may change as I know it's a hard road).
A conversation with my non CF'er
He said for his essay he wanted to write about his sister with CF; brainstorming last night. He said he is very interested in genetics because of her. He used the term "Precision Medicine".. I wanted to encourage him to write not just about his sister but about himself..That he has a level of empathy; because of her situation. I actually don't even think he has absorbed all the "emotional" stuff but is moving forward with the intellectual side of being a sibling of someone chronically ill. Anyway, here is some positive stuff from all of this: another kid planning a career in science(course that may change as I know it's a hard road).
Please Take A Moment To Read
lundi 21 septembre 2015
Hi everyone,
I have a big request for all of you! If you could please take a couple minutes to read this thread I would greatly appreciate it.
I am currently a senior in high school and in order to graduate I have to create a senior project that relates to something powerful in my life. I think most of us can agree on that fact that CF is one of the most impacting/ powerful things in our lives. I want to create a book filled with writings from you guys. I want us to be able to share our story, our CF journey. I'm reaching out to all of you, asking you to do one thing for me. Please write to me. I want to know how CF has impacted all of your lives. Be as creative with this as you want to be. Send me a poem, a letter,or a drawing. Write me a sentence if that's all you have time for. Please keep in mind that this can either be anonymous, signed with your initials, or age. You can send in your stories/poems/drawings through this forum or email it to me at: sheilaaa14191@gmail.com. Once I get enough responses, I will then take all the material you guys have sent me, I will have a hard copy book made and present it to my school. If you are interested in getting a copy of the book at the end, let me know. This project if very meaningful to me. I've always been the type of person to hide the fact that I have CF, but I'm hoping that with this project, I'll be able to express that side of me. Thank you all so much for your time. If you have any questions regarding this project please feel free to ask me. I look forward to hearing from you.
Much love,
Sheila
Please Take A Moment To Read
I have a big request for all of you! If you could please take a couple minutes to read this thread I would greatly appreciate it.
I am currently a senior in high school and in order to graduate I have to create a senior project that relates to something powerful in my life. I think most of us can agree on that fact that CF is one of the most impacting/ powerful things in our lives. I want to create a book filled with writings from you guys. I want us to be able to share our story, our CF journey. I'm reaching out to all of you, asking you to do one thing for me. Please write to me. I want to know how CF has impacted all of your lives. Be as creative with this as you want to be. Send me a poem, a letter,or a drawing. Write me a sentence if that's all you have time for. Please keep in mind that this can either be anonymous, signed with your initials, or age. You can send in your stories/poems/drawings through this forum or email it to me at: sheilaaa14191@gmail.com. Once I get enough responses, I will then take all the material you guys have sent me, I will have a hard copy book made and present it to my school. If you are interested in getting a copy of the book at the end, let me know. This project if very meaningful to me. I've always been the type of person to hide the fact that I have CF, but I'm hoping that with this project, I'll be able to express that side of me. Thank you all so much for your time. If you have any questions regarding this project please feel free to ask me. I look forward to hearing from you.
Much love,
Sheila
Welcome to my New Granddaughter
My daughter had a BABY GIRL!! Her name is Sydney Ann she was a couple weeks early but mom and baby doing great!! She was 6lbs and 9 oz she seems so little!! Been a while since we have had a newborn! I feel so blessed she is perfect! Connor is my grandson he is 7 years old he has CF and he could not be happier!! He loves to hold her, rock her and sings to her. But he does not want us to hear so he sings very softly it just melts my heart! (L) pics on my profile!
Connor had a very rough year last year but now he is doing great!! Back to school in 2nd grade and very happy, smart little guy!
because of the rough year Connor had a really bad fear of labs, iv's well almost everything. I couldn't blame him, but we had to find a way to get him over this. I asked for Pen Pals since Connor believed he was the only one with CF.. I got a great response and it meant so much to Connor to know... there are other kids with CF and have a lot of the same treatments and issues. It also opened up Connor to talk more about CF my daughter and I, her husband oh and Papa too would talk about CF more and what it means for Connor. I cannot tell you what a difference this has made to Connor!! He tells the docs and nurses about his Pen Pals and how they all have so much in common and they all have CF! I took him to see a new doc a allergist last month and he asked all the questions... you know history and all that.. He asked me is anyone else in the family had CF .. Connor stopped me, said " I got this one" he said No, but I do have pen pal friends they do have CF and they are boys!!
He did also get a break from being sick!! Last time he was in the hospital was May.. he did have tonsils and bronch over the summer but he got to go home the same day!! Connor began to get more comfortable again with cultures, labs, iv's (well kind of) He is doing SO much better than he was, does not freak out and try to leave :( He did not have a anxiety attack when he was in short stay surgery in fact he was pretty relaxed but the nurses worked with my daughter and agreed not to do IV till he was out. Connor was happy about that!!
First week of school he was having tummy issues so we had to do labs.. the first one he was upset but held still and cried just a little.. the guy that took his lab was awesome.. the second lab same week to recheck his levels he did not cry!! did not freak out and did great!!
I was so proud of him!! He is the bravest person I know.. I always tell him that... but this time he said you know what Grandma I think your right!! :o
SO I want to thank you all for this forum and everyone that is on here!! It is not easy for kids and adults with CF go through so much!!
but so do the families and the Parents! I pray for you all everyday!
I am a Grandma and I feel so blessed, we may not have all good days but this Month we have had more that I can count!! I have all grandsons so you know I am going to spoil my granddaughter!! Think Pink!!
The sweetest thing that made me and my daughter cry.. Connor asked if Sydney has CF (U) he said I do not want her to have it because it can hurt sometimes all the labs and iv's would really make a baby cry. My daughter told him No.. she does not have CF he was so happy and then he said well he will still make sure she does not get hurt!!
Thank you all!!! from one
Proud Grandma!
Welcome to my New Granddaughter
Connor had a very rough year last year but now he is doing great!! Back to school in 2nd grade and very happy, smart little guy!
because of the rough year Connor had a really bad fear of labs, iv's well almost everything. I couldn't blame him, but we had to find a way to get him over this. I asked for Pen Pals since Connor believed he was the only one with CF.. I got a great response and it meant so much to Connor to know... there are other kids with CF and have a lot of the same treatments and issues. It also opened up Connor to talk more about CF my daughter and I, her husband oh and Papa too would talk about CF more and what it means for Connor. I cannot tell you what a difference this has made to Connor!! He tells the docs and nurses about his Pen Pals and how they all have so much in common and they all have CF! I took him to see a new doc a allergist last month and he asked all the questions... you know history and all that.. He asked me is anyone else in the family had CF .. Connor stopped me, said " I got this one" he said No, but I do have pen pal friends they do have CF and they are boys!!
He did also get a break from being sick!! Last time he was in the hospital was May.. he did have tonsils and bronch over the summer but he got to go home the same day!! Connor began to get more comfortable again with cultures, labs, iv's (well kind of) He is doing SO much better than he was, does not freak out and try to leave :( He did not have a anxiety attack when he was in short stay surgery in fact he was pretty relaxed but the nurses worked with my daughter and agreed not to do IV till he was out. Connor was happy about that!!
First week of school he was having tummy issues so we had to do labs.. the first one he was upset but held still and cried just a little.. the guy that took his lab was awesome.. the second lab same week to recheck his levels he did not cry!! did not freak out and did great!!
I was so proud of him!! He is the bravest person I know.. I always tell him that... but this time he said you know what Grandma I think your right!! :o
SO I want to thank you all for this forum and everyone that is on here!! It is not easy for kids and adults with CF go through so much!!
but so do the families and the Parents! I pray for you all everyday!
I am a Grandma and I feel so blessed, we may not have all good days but this Month we have had more that I can count!! I have all grandsons so you know I am going to spoil my granddaughter!! Think Pink!!
The sweetest thing that made me and my daughter cry.. Connor asked if Sydney has CF (U) he said I do not want her to have it because it can hurt sometimes all the labs and iv's would really make a baby cry. My daughter told him No.. she does not have CF he was so happy and then he said well he will still make sure she does not get hurt!!
Thank you all!!! from one
Proud Grandma!
Question about Cultures - When is it concerning?
I've posted a few times but the quick background is I have a 15 month old son dx CRMS (one disease cause and one variable mutation). He just switched from one clinic that was being reactive to a more proactive clinic last month. The question I have right now is about throat cultures. He has never had a completely clear swab but so far we have been told that nothing he has cultured needed to be treated. I have trusted that and I do still trust that, but I guess I am wondering when a positive culture would warrant treatment or when a positive culture may be something to be more concerned over. He has never cultured pseudo so that's good news and I have understood that to be something more concerning, but at both his last culture at his previous clinic in July and his first culture at his new clinic last month, he cultured "moderate" amounts of Acinetobacter Baumannii. To be clear, I am not doubting the doctor's decision to not treat this. I am just not sure I understand what exactly would trigger treatment in conjunction with a positive culture.
So far the list of things he has cultured include A. Baumanni, Chryseobacterium Indologenes, Staph & sphingobacterium multivorum but A. Baumannii is the only one he's ever had show up twice in a row so it's tweaking my interest a little more. I was told by our first pulmonologist that babies are infamous for having all kinds of things show up in their cultures since they are always putting weird things in their mouths but having it be present for 2 cultures in a row makes me wonder if it it something I should be more aware of.
We are going back to our new clinic this Friday to follow up with the doctor and I do want to have this discussion with her too but I thought it might be a better discussion if I prepared myself with some guidance here first instead of trying to bumble along as the doctor explains things using medical jargon at a level I might not be able to immediately comprehend.
Any elementary level (or as close to) explanations would be very welcome!
Question about Cultures - When is it concerning?
So far the list of things he has cultured include A. Baumanni, Chryseobacterium Indologenes, Staph & sphingobacterium multivorum but A. Baumannii is the only one he's ever had show up twice in a row so it's tweaking my interest a little more. I was told by our first pulmonologist that babies are infamous for having all kinds of things show up in their cultures since they are always putting weird things in their mouths but having it be present for 2 cultures in a row makes me wonder if it it something I should be more aware of.
We are going back to our new clinic this Friday to follow up with the doctor and I do want to have this discussion with her too but I thought it might be a better discussion if I prepared myself with some guidance here first instead of trying to bumble along as the doctor explains things using medical jargon at a level I might not be able to immediately comprehend.
Any elementary level (or as close to) explanations would be very welcome!
Asthama and PFT?
I'm hoping our resident expert (Dot the darling!) can help with this but wanted to post instead of PM in case others have similar questions but also in case others have ideas based on their clinic's handling.
DS has just figured out the spirometer and in prep for next week's quarterly I wanted to see what how things changed pre and post brochialdialtor. When he was an infant and they did the "plastic box" test he had a pretty sharp improvement after the Xopenex which they said indicated an asthmatic component. he's been on Qvar daily for a couple years when he had a cough with running. So I'm wondering if that has stabilized the asthama somewhat so the results wouldn't be as stark. But they are definitely higher post. So I'm wondering does this say anything re an asthmatic component or do all with CF do better after a bronchialdialtor? We did 2 days with a pre and post Xopenex (10 minutes after Xopenex, but during that time we continued with his hyper-sal).
Day 1:
Pre Text Post Test
FVC 1.32 1.45FEV1
FEV1 1.08 1.24
PEF 114 149
FEF25-75 .87 1.34
Day 2
FVC 1.47 1.56
FEV1 1.15 1.29
PEF 126 163
FEF25-75 1.02 1.18
So do folks know if it this pre-post bronchial dilator fairly "normal"? (Obviously I'm going to discuss with the doctor but wanted to think through things before. Thanks all!)
Asthama and PFT?
DS has just figured out the spirometer and in prep for next week's quarterly I wanted to see what how things changed pre and post brochialdialtor. When he was an infant and they did the "plastic box" test he had a pretty sharp improvement after the Xopenex which they said indicated an asthmatic component. he's been on Qvar daily for a couple years when he had a cough with running. So I'm wondering if that has stabilized the asthama somewhat so the results wouldn't be as stark. But they are definitely higher post. So I'm wondering does this say anything re an asthmatic component or do all with CF do better after a bronchialdialtor? We did 2 days with a pre and post Xopenex (10 minutes after Xopenex, but during that time we continued with his hyper-sal).
Day 1:
Pre Text Post Test
FVC 1.32 1.45FEV1
FEV1 1.08 1.24
PEF 114 149
FEF25-75 .87 1.34
Day 2
FVC 1.47 1.56
FEV1 1.15 1.29
PEF 126 163
FEF25-75 1.02 1.18
So do folks know if it this pre-post bronchial dilator fairly "normal"? (Obviously I'm going to discuss with the doctor but wanted to think through things before. Thanks all!)
Orkambi and Pregnancy
Anyone here that is taking Orkambi and trying to get/is pregnant??
Orkambi and Pregnancy
GlobalGenes.org in Huntingdon Beach California
I will be there representing all of us! We are being sponsored by Healthcare at Home a company from the UK. I met Natalie Douglas in April at an eyeforpharma conference in Philadelphia. She is a Board member of www.globalgenes.org. She is impressed with our community, and the work we are doing since the important survey when 478 of you participated.
I will bring the reports...but mostly KNOW that YOU are the Gatekeepers of so much important work for Rare Diseases! I want to let everyone know YOU are the ones who cheer each other into clinical trials. You are the ones who are testing personalized medicine...which as LittleLab4CF reminds me is like a nuclear bomb to your system...it changes all the cells. (He may correct me here).
You are the ones so many diseases which have NO drugs can look to.
You have forged the path. You are the pioneers for genetic medicine
I want them to know.
Fabio Gratton will also meet me in Huntingdon Beach to show me the new website his team has been working on for us.
I will even get to meet some of you out there.
I am humbled and excited!
Salt and Light,
Jeanne
GlobalGenes.org in Huntingdon Beach California
I will bring the reports...but mostly KNOW that YOU are the Gatekeepers of so much important work for Rare Diseases! I want to let everyone know YOU are the ones who cheer each other into clinical trials. You are the ones who are testing personalized medicine...which as LittleLab4CF reminds me is like a nuclear bomb to your system...it changes all the cells. (He may correct me here).
You are the ones so many diseases which have NO drugs can look to.
You have forged the path. You are the pioneers for genetic medicine
I want them to know.
Fabio Gratton will also meet me in Huntingdon Beach to show me the new website his team has been working on for us.
I will even get to meet some of you out there.
I am humbled and excited!
Salt and Light,
Jeanne
Best nebulizer recommended for Tobi and Pulmozyme
dimanche 20 septembre 2015
My daughter who is almost 5 just recently started doing Pulmozyme and will start Tobi in a few days. Up until now we were doing her nebs using a device that is not specifically recommended for CF meds. I want to look for something online (I live in the middle east and we don't have these types of nebs available locally) that would be the best for use with these medications but I have no idea where to start. Can you guys recommend something for me? I want a device that is known for its best delivery of these medications and if it's light-weight and can operate on batteries as well as a power cord then this would be a plus.
Also do these devices usually come with extra cups or can we buy extras along with the device?
TIA
Best nebulizer recommended for Tobi and Pulmozyme
Also do these devices usually come with extra cups or can we buy extras along with the device?
TIA
Best nebulizer recommended for Tobi and Pulmozyme
My daughter who is almost 5 just recently started doing Pulmozyme and will start Tobi in a few days. Up until now we were doing her nebs using a device that is not specifically recommended for CF meds. I want to look for something online (I live in the middle east and we don't have these types of nebs available locally) that would be the best for use with these medications but I have no idea where to start. Can you guys recommend something for me? I want a device that is known for its best delivery of these medications and if it's light-weight and can operate on batteries as well as a power cord then this would be a plus.
Also do these devices usually come with extra cups or can we buy extras along with the device?
TIA
Best nebulizer recommended for Tobi and Pulmozyme
Also do these devices usually come with extra cups or can we buy extras along with the device?
TIA
Just one day off
samedi 19 septembre 2015
So was at the hair salon (woops, typo, but now THATwould be nice!) and overhearing the ladies next to me chatting about one lady whose son just started football and they practice everyday and even though it's just up the block, the drop off and pick up just is constant and "oh, can't we just have one day off."
They. Have. No. Idea. How blessed they are.
Just one day off
They. Have. No. Idea. How blessed they are.
long term hospital stay
I was in upmc for a month had pnemonia and mucus plugs and my pfts went down by 20% culured mersa and b cepicea amd phsudo had bronc scope and had a bad reaction to it got a fever a high one that couldn't get down for couple days got confused amd really scared but it broke and they got out 2 mucus plugs out I was on fortaz iv and televansin in and another iv I forget the name but was one they always give me I got out bout 4 weeks now getting legs back was hard lost alot of wt and mucle got pft back to base but went for check up pft back down some and having short of breath and streaks of blood in mucus this just started few days after starting inhaled tobi havnt been on it in a long time I usually cycle fortaz and colistine they added the tobi amd I go in for inhaled vanc for the observation to c how I do on it my questiosquestions r after all that time on iv antibiotics can I b getting sick agian so fast and how fast does mucus plugs take to come back and if ur on inhaled vanc had it helped and how is it tolerated and does tobi make u cough blood and make ahort of breath and pfts to go down my base is 58% and was when I left hospital at check up it went down to 51% should I try a oral antibiotics cause after hospital they took me off all maintenance antibiotics before hospital I was on bactrum and azithromisin amd doxy as maintenance im worried that I will have to go bk in so soon after bein in so long and afriad of the mersa this is first time cultruring it amd that it will cause me to have a decline and having to b hospialized more often I was happy to get out wanted to start exercising and maybe try to work couple days a week but not so sure I can or I should now I just started the orkombi yesterday but been on it for long time during study just didnt know what mg I was on that part was blinded but was getting the drug for lomg time I was wanting to get bk to normal or as close as I could and try to go to beach with family and work few days for extra money to do more things for and with family but unsure if ill b able to not sure what to do I wish I knew if I was goin to getsick agian or I habe time to do things with my womderful family after all that time in hospital and work some to help them with money and able to do things with them sorry for long message any help would help me alot thank you all for the help I hope everyone stays and gets healthy thank u
long term hospital stay
Bronchial dialator question
jeudi 17 septembre 2015
Stupid question (again). How does chronic treatment with bronchial dialator's help those with CF? My understanding is it opens the airways. But what does it do for CF? I mean it doesn't think the mucus...and if there is no excerabation or shortness of breath, what is the way that it works prophelatically?
The reason I'm asking is this: We do 2x a day. Occassionally, if DS is coughing more than baseline (like after a day outside with lots of polland), I might do 3x. So what I want to discuss with the doctor is whether it makes sense to always do 3x a day (I would do the mid-day one with an inhaler and not nebulized, absent some issues). Or does doing 3x a day make it less helpful when there is an exacerbation? What would be the pros and cons of my thought? (Knowing how the opening the airways helps given what CF does, would help me think through this as I discuss with the doctor). I also would like to try him working on the inhaler without a spacer and thought that this would be perfect "practice" as it wouldn't be imperative that he get the entire dosing?
Thoughts???
Thanks
Bronchial dialator question
The reason I'm asking is this: We do 2x a day. Occassionally, if DS is coughing more than baseline (like after a day outside with lots of polland), I might do 3x. So what I want to discuss with the doctor is whether it makes sense to always do 3x a day (I would do the mid-day one with an inhaler and not nebulized, absent some issues). Or does doing 3x a day make it less helpful when there is an exacerbation? What would be the pros and cons of my thought? (Knowing how the opening the airways helps given what CF does, would help me think through this as I discuss with the doctor). I also would like to try him working on the inhaler without a spacer and thought that this would be perfect "practice" as it wouldn't be imperative that he get the entire dosing?
Thoughts???
Thanks
Pancreatic Issues and Orkambi
mercredi 16 septembre 2015
So I am having stomach issues since I started taking Orkambi. It seems that when I increase my dosage of zenpep these issues subside on their own. Yesterday, I asked my doctor if I could up my dosage of zenpep, currently 13 per meal, by 1 or 2 pills and was told that I could not. His response was that I would go over the maximum amount of Lipase per day and would scar my colon. However, I have done some research on my own today and have found that the dosing info says 2,500 units of lipase per kg per meal OR 10,000 units of lipase per kg per day. If I use the daily calculation I still have another 11 pills I could actually take each day. My question would be does anyone else use the 10,000 units a day as the dosing max or is it standard to use the 2,500 units per kg per meal max as a guide?
Pancreatic Issues and Orkambi
Lifetime of undiagnosed GI symptoms + asthma and waiting for genetic testing
Hi everyone. I have a really long and complicated medical history, so I'll try to truncate it as much as I can.
I'm an almost-34 year old female of (as far as we know!) 100% Ashkenazi descent. I was born six weeks prematurely and required oxygen and feeding tubes. At birth, I was diagnosed with lactose intolerance and hyperactive airways. Throughout infancy, I had chronic colds, bronchitis, and diarrhea. My mother was told that I was swallowing mucus instead of expelling it, causing the diarrhea. She never really believed it, but could never get a better answer. She had to take a two year sabbatical from teaching to care for me-- a chief reason being to maintain my weight.
As far back as I can remember, I was sick. I do not ever remember feeling well. I would get sick every time I ate, coughing up mucus and whatever just went down. I always felt weak and run down. I never remember having an appetite or craving food. It was always this chore I had to do-- eat and be sick.
When I was seven, I had a full ENT workup, where I was re-diagnosed with bronchial asthma. (I still struggle with it today). The GI symptoms just got worse and were never addressed beyond shrugs from our doctor. I would have dumping episodes every time I ate. Compounded with all of this, I was diagnosed with panic disorder at age nine and have been in treatment most of my life.
As I got older, the malabsorption worsened to such a degree that I couldn't eat out because I wouldn't make it into the bathroom in time. At 17, without a single ounce of labwork, I was given the diagnoses of IBS-D and GERD. To date, I have never responded to any IBS or reflux treatments given. Due to my GI symptoms, I became increasing phobic about going out and developed agoraphobia.
Finally, four years ago, my symptoms became a crisis situation. I lost almost 30 lbs in less than 2 months. Every meal would go straight through me and developed what I was told was protein edema in my abdomen and legs. I was rushed to the ER where, awaiting labwork, I was wrongfully given an eating disorder diagnosis without an evaluation. That labwork came back positive for c. difficile, which boggled the doctors as I hadn't been on antibiotics, proton-pump inhibitors, and hadn't been near a public restroom in years. My vitamins (A, D, iron, etc) and minerals (potassium, etc) were dangerously low. I had iron infusions and PPN lines, which temporarily raised my levels. During my hospitalization, I had endo and colonoscopies, biopsies, sonograms, and an MRI. During that period, everyone thought I had Celiac or Crohns, but both the biopsies and bloodwork came back negative. The scopes showed a lot of damage from c. diff, chronic reflux and diarrhea. I had a prolapse and sludge in my gallbladder before I was 30. The doctor who did the scopes ever-so-kindly told me that my guts look liked they belonged to an 85 year old with a lifetime of chronic GI issues.
Unfortunately, I relapsed with c. diff multiple times. During my second hospital stay for c. diff, I was down to 89 lbs and put on a 6,000 calorie-a-day diet and developed refeeding syndrome. I finally had an FMT procedure last June, which was successful of curing the c. difficile...
But nothing else got better. The dumping episodes I've experienced my entire life continue. The diarrhea and mucus output have worsened and I was put on an Imodium regime that I follow to this day-- 3 1/2 days on, 3/ 1/2 days off. So I have 3 1/2 days where I can go out, go to school (I'm a doctoral student), and try to live a fairly normal life. Then it's 3 1/2 days (Thursday night through Sunday night) where I live in the bathroom. The edema persists, my weight continues to remain dangerously unstable. My doctors (GI, infectious disease, and endocrine) grew nasty and unhelpful, declaring, without performing further labwork, that I had 'refractory IBS' and the edema was 'body dysmorphia'. Despite endless conversations with my MD/PHD therapist and RD/MS dietitian to my doctors, confirming this was not psychosomatic or psychological and that I was truly very physically ill, I could not get a medical doctor to take my symptoms seriously. My vitamin levels fell to single digits. My teeth started to break. My hair fell out. Going to the store required a full day of rest afterward. Finally, in a desperate attempt to be heard, I went back to the GI doctor who performed my FMT and begged him to help.
I did a 72 hour stool test and was diagnosed with severe exocrine pancreatic insufficiency. My current bloodwork shows my Vitamin D at 3 ng/ml and my Vitamin A at less than 0.03 mg/l. I'm very anemic and losing protein all over the place. Finally, last month, my GI ordered genetic testing for CF. Nearly all of my family was wiped out in WWII, so we don't have a lot of family history to go by.
I find myself in the horrible position of hoping the tests come back positive for mutations so I can finally have some answers and hopefully get medical treatment for a very real organic illness I have bee struggling with all of my life and, conversely, feeling deeply guilty and ashamed for hoping the result is CF.
Thank you for allowing me to voice all of this. It's been 18 days, and I'm still waiting for the results. Has anyone had a similar experience?
Lifetime of undiagnosed GI symptoms + asthma and waiting for genetic testing
I'm an almost-34 year old female of (as far as we know!) 100% Ashkenazi descent. I was born six weeks prematurely and required oxygen and feeding tubes. At birth, I was diagnosed with lactose intolerance and hyperactive airways. Throughout infancy, I had chronic colds, bronchitis, and diarrhea. My mother was told that I was swallowing mucus instead of expelling it, causing the diarrhea. She never really believed it, but could never get a better answer. She had to take a two year sabbatical from teaching to care for me-- a chief reason being to maintain my weight.
As far back as I can remember, I was sick. I do not ever remember feeling well. I would get sick every time I ate, coughing up mucus and whatever just went down. I always felt weak and run down. I never remember having an appetite or craving food. It was always this chore I had to do-- eat and be sick.
When I was seven, I had a full ENT workup, where I was re-diagnosed with bronchial asthma. (I still struggle with it today). The GI symptoms just got worse and were never addressed beyond shrugs from our doctor. I would have dumping episodes every time I ate. Compounded with all of this, I was diagnosed with panic disorder at age nine and have been in treatment most of my life.
As I got older, the malabsorption worsened to such a degree that I couldn't eat out because I wouldn't make it into the bathroom in time. At 17, without a single ounce of labwork, I was given the diagnoses of IBS-D and GERD. To date, I have never responded to any IBS or reflux treatments given. Due to my GI symptoms, I became increasing phobic about going out and developed agoraphobia.
Finally, four years ago, my symptoms became a crisis situation. I lost almost 30 lbs in less than 2 months. Every meal would go straight through me and developed what I was told was protein edema in my abdomen and legs. I was rushed to the ER where, awaiting labwork, I was wrongfully given an eating disorder diagnosis without an evaluation. That labwork came back positive for c. difficile, which boggled the doctors as I hadn't been on antibiotics, proton-pump inhibitors, and hadn't been near a public restroom in years. My vitamins (A, D, iron, etc) and minerals (potassium, etc) were dangerously low. I had iron infusions and PPN lines, which temporarily raised my levels. During my hospitalization, I had endo and colonoscopies, biopsies, sonograms, and an MRI. During that period, everyone thought I had Celiac or Crohns, but both the biopsies and bloodwork came back negative. The scopes showed a lot of damage from c. diff, chronic reflux and diarrhea. I had a prolapse and sludge in my gallbladder before I was 30. The doctor who did the scopes ever-so-kindly told me that my guts look liked they belonged to an 85 year old with a lifetime of chronic GI issues.
Unfortunately, I relapsed with c. diff multiple times. During my second hospital stay for c. diff, I was down to 89 lbs and put on a 6,000 calorie-a-day diet and developed refeeding syndrome. I finally had an FMT procedure last June, which was successful of curing the c. difficile...
But nothing else got better. The dumping episodes I've experienced my entire life continue. The diarrhea and mucus output have worsened and I was put on an Imodium regime that I follow to this day-- 3 1/2 days on, 3/ 1/2 days off. So I have 3 1/2 days where I can go out, go to school (I'm a doctoral student), and try to live a fairly normal life. Then it's 3 1/2 days (Thursday night through Sunday night) where I live in the bathroom. The edema persists, my weight continues to remain dangerously unstable. My doctors (GI, infectious disease, and endocrine) grew nasty and unhelpful, declaring, without performing further labwork, that I had 'refractory IBS' and the edema was 'body dysmorphia'. Despite endless conversations with my MD/PHD therapist and RD/MS dietitian to my doctors, confirming this was not psychosomatic or psychological and that I was truly very physically ill, I could not get a medical doctor to take my symptoms seriously. My vitamin levels fell to single digits. My teeth started to break. My hair fell out. Going to the store required a full day of rest afterward. Finally, in a desperate attempt to be heard, I went back to the GI doctor who performed my FMT and begged him to help.
I did a 72 hour stool test and was diagnosed with severe exocrine pancreatic insufficiency. My current bloodwork shows my Vitamin D at 3 ng/ml and my Vitamin A at less than 0.03 mg/l. I'm very anemic and losing protein all over the place. Finally, last month, my GI ordered genetic testing for CF. Nearly all of my family was wiped out in WWII, so we don't have a lot of family history to go by.
I find myself in the horrible position of hoping the tests come back positive for mutations so I can finally have some answers and hopefully get medical treatment for a very real organic illness I have bee struggling with all of my life and, conversely, feeling deeply guilty and ashamed for hoping the result is CF.
Thank you for allowing me to voice all of this. It's been 18 days, and I'm still waiting for the results. Has anyone had a similar experience?
R117h + ivs8-5t/78/9t/7t
mardi 15 septembre 2015
We got a phone call from the hospital where my two week old daughter was born...they said that he CF test came back positive with this info R117H + IVS8-5T/78/9T/7T...
Can someone please help me figure out what this means? They were no help over the phone. My wife is a carrier of CF, but not sick at all...we told the baby's pediatrician about this and she said not to worry about a sweat test yet, but now the hospital wants us to have one!
Any help would be great!
R117h + ivs8-5t/78/9t/7t
Can someone please help me figure out what this means? They were no help over the phone. My wife is a carrier of CF, but not sick at all...we told the baby's pediatrician about this and she said not to worry about a sweat test yet, but now the hospital wants us to have one!
Any help would be great!
Where to find "generic" Kalydeco
Hello dear friends,
A close friend of mine has one of the gene mutations to be treated with Kalydeco but is not available here in Chile (and even if it was, the financial aid or insurance coverage for this kind of medication is non-existent here and way out budget for almost any family).
We have heard there might be some "generic" versions being produced and sold in Israel, India and China, but so far we haven't been able to find a reliable contact.
I would really appreciaty any kind of information that might help us find a reachable option.
Thanks in advance
Sebastian
Where to find "generic" Kalydeco
A close friend of mine has one of the gene mutations to be treated with Kalydeco but is not available here in Chile (and even if it was, the financial aid or insurance coverage for this kind of medication is non-existent here and way out budget for almost any family).
We have heard there might be some "generic" versions being produced and sold in Israel, India and China, but so far we haven't been able to find a reliable contact.
I would really appreciaty any kind of information that might help us find a reachable option.
Thanks in advance
Sebastian
scholarship info
In placing an order earlier I was chit chatting with the agent based on my .edu email address and he shared with me some info for scholarships, which I'm posting here too:
The scholarship award information, criteria for the scholarship, application process, and deadline for submission are provided at http://ift.tt/1Kp1xWX.
scholarship info
The scholarship award information, criteria for the scholarship, application process, and deadline for submission are provided at http://ift.tt/1Kp1xWX.
constant sinus drainage after lung transplant
lundi 14 septembre 2015
I had a lung transplant (and liver) in late 2012. I had sinus surgery in December 2013. But I have constant mucus buildup and sinus drainage 24/7. I blow my nose several times a day and cough up stuff often that I know is from the sinus drainage. I do sinus rinses at least once a day, every day along with nasonex every day. I don't want this to cause an infection. I feel like this is getting worse and my ENT just says its CF and doesn't do anything about it (although he does clean out my sinuses when I see him). Does anyone have any remedies to decrease the amount of mucus buildup in my sinuses?
constant sinus drainage after lung transplant
Help Please: 50 psi recommendations
What 50 psi compressor do you use/have you used? Pros/cons, etc?
Help Please: 50 psi recommendations
Own your own health records?
only in New Hampshire!
It is a beginning...for patient self management!
http://ift.tt/1iIPOcZ
I love Eric Topol...Hope I can meet him someday soon!
Salt and Light,
jeanne
Own your own health records?
It is a beginning...for patient self management!
http://ift.tt/1iIPOcZ
I love Eric Topol...Hope I can meet him someday soon!
Salt and Light,
jeanne
Transcript from FDA Advisory Committee Meeting for Orcambi
samedi 12 septembre 2015
Is finally available on line here:
http://ift.tt/1UL4DwF
Transcript from FDA Advisory Committee Meeting for Orcambi
http://ift.tt/1UL4DwF
Looking for Stock photos for fundraising
I am looking for a few photos to download for our CF walk. In the past, to promote awareness I would use a photo of my daughter. I think she would prefer a generic photo of a logo from the CF foundation or purple ribbon and I am having trouble finding something. Help?
Looking for Stock photos for fundraising
strange question about chairs for vest users
jeudi 10 septembre 2015
My adult son uses an airway clearance vest 2 times a day. He is pancreatic sufficient and not on the skinny side. He needs to sit at a desk while he does the vest so he can do nebs (and look at a computer screen to ease boredom) at the same time. Anyway, with the oscillation of the vest, he has so far broken 4-5 different chairs. Some break while he is on the chair, and some break several days or months later. Several of them were Danish modern quality chairs made of teak from a high end furniture store. Several of them were less expensive chairs with caning. It seems that any chair with joints that can come apart from constant shaking will eventually fail. We don't want to put him on a slouchy sofa while he does the vest as that is not great for clearance, but that is the only thing I can think of that won't fall apart.
So, what kind of chair do you folks use that does not break from the constant resonance?
strange question about chairs for vest users
So, what kind of chair do you folks use that does not break from the constant resonance?
Stupid spirometer question
If a spirometer is properly working (sincroniced or whatever its called/spelled), is it possible for it to wrongly record a too high number based on a child's improper technique? I can see a low number being wrong or not an accurate assessment because the technique is wrong, but is it possible for a high number (that isn't repeatedable, because of youth and inability to consistently do a good technique), to be wrong or inaccurate based on technique? Or can you assume if there are 6 blows and one is high and the others all low, the high is the "correct" one and the lows are based on inconsistent/inaccurate technique?
Thanks!!
Stupid spirometer question
Thanks!!
Traveling Abroad
mardi 8 septembre 2015
I've recently just applied to travel abroad to Thailand with my school but have never before traveled outside of the US. Does anyone have any suggestions on how to safely get all meds on the plane, through security, etc. Or any other good travel tips.
Thank!!!
Traveling Abroad
Thank!!!
Weight Lifting
I've heard weight lifting can help with lung function and improving PFT scores. I'm just not sure what type of weight lifting exercises I should be doing...please help!
Weight Lifting
In Need o Help Right Away
lundi 7 septembre 2015
I have been on this site a few years ago and have decided to return because I am in great need of help, guidance and advice.
MY SITUATIONS:
I am a 29 year old female from California. I have cystic fibrosis, cystic fibrosis related type one diabetes, I had a double lung transplant 5 years ago and now have numerous transplant complications including 2 types of aggressive skin cancer, cataracts (now currently being treated), chronic pain, osteoarthritis and chronic pain. I have a college degree in anthropology, work as a freelance writer and in customer service and work as a volunteer for several different organizations.
THE PROBLEM:
I currently am on state disability because it is very difficult for me to keep a sustainable full time job due to my health problems. From state disability I get a little less then $900 a month. I am only allowed to make $1000 a month after this. Meaning legally between any work that I can get and keep and my disability income I can only get about #1,900 a month. IT IS LITERALLY IMPOSSIBLE TO LIVE ON $1,900 A MONTH!!! And now to make matters worse the car my parents were so amazingly kind enough to buy me 11 years ago is dying, literally I never know if it is going to start or not making it impossible to know if I will make it to work at all, when I can work. I currently live with my parents and need to get out. I am 29 years old and want to live on my own while I am still relatively healthy enough to do so.
THE QUESTION:
How are adults with cystic fibrosis supposed to live? How does everyone else support themselves? I don't have a significant other to lean on, my parents are retiring in a week and obviously have to support themselves through retirement. How am I supposed to get by or be any kind of independent. I am so terrified of loosing my medical insurance that I feel like I am completely stuck being on state disability. Does anyone know of any programs, resources, people, organizations I can go to for help/assistance? How can people in my position (with cystic fibrosis) keep fighting a disease when we are so busy fighting the system just for basic things. I was born with this, I didn't bring this on myself. I am someone who wants for very little, just a chance at a decent life. Right now I don't even feel like I have a purpose, just to live a life fighting a disease that will eventually kill me anyways.
ANY INFORMATION OR RESOURCES YOU COULD PROVIDE WOULD BE SO GREATLY APPRECIATED!! PLEASE ALSO FEEL FREE TO EMAIL ME AT anthro9310@yahoo.com please please help in anyway you can.
Thank you so much for your time
Annie
In Need o Help Right Away
MY SITUATIONS:
I am a 29 year old female from California. I have cystic fibrosis, cystic fibrosis related type one diabetes, I had a double lung transplant 5 years ago and now have numerous transplant complications including 2 types of aggressive skin cancer, cataracts (now currently being treated), chronic pain, osteoarthritis and chronic pain. I have a college degree in anthropology, work as a freelance writer and in customer service and work as a volunteer for several different organizations.
THE PROBLEM:
I currently am on state disability because it is very difficult for me to keep a sustainable full time job due to my health problems. From state disability I get a little less then $900 a month. I am only allowed to make $1000 a month after this. Meaning legally between any work that I can get and keep and my disability income I can only get about #1,900 a month. IT IS LITERALLY IMPOSSIBLE TO LIVE ON $1,900 A MONTH!!! And now to make matters worse the car my parents were so amazingly kind enough to buy me 11 years ago is dying, literally I never know if it is going to start or not making it impossible to know if I will make it to work at all, when I can work. I currently live with my parents and need to get out. I am 29 years old and want to live on my own while I am still relatively healthy enough to do so.
THE QUESTION:
How are adults with cystic fibrosis supposed to live? How does everyone else support themselves? I don't have a significant other to lean on, my parents are retiring in a week and obviously have to support themselves through retirement. How am I supposed to get by or be any kind of independent. I am so terrified of loosing my medical insurance that I feel like I am completely stuck being on state disability. Does anyone know of any programs, resources, people, organizations I can go to for help/assistance? How can people in my position (with cystic fibrosis) keep fighting a disease when we are so busy fighting the system just for basic things. I was born with this, I didn't bring this on myself. I am someone who wants for very little, just a chance at a decent life. Right now I don't even feel like I have a purpose, just to live a life fighting a disease that will eventually kill me anyways.
ANY INFORMATION OR RESOURCES YOU COULD PROVIDE WOULD BE SO GREATLY APPRECIATED!! PLEASE ALSO FEEL FREE TO EMAIL ME AT anthro9310@yahoo.com please please help in anyway you can.
Thank you so much for your time
Annie
How do you know when you need IV antibiotics?
samedi 5 septembre 2015
I have posted here before about my two sons getting diagnosed in their teens a few years ago. Because we did not go through the normal learning curve with CF, there is some basic knowledge that we do not have. This is one of these instances.
My older son, age 20 is having an exacerbation. He has never been hospitalized (for anything, let alone CF). He has been on cipro over 3 days with no positive effect yet. He is using his vest 3 hours a day, and is coughing too much to sleep at night. When we called the doctor, he said all we can do now is take him to the ER if we want to. My question is -- what is bad enough to go to the ER? The doctor really didn't give me a straight answer on this.
Also if he does go there, will he be admitted for IV antibiotics, or do they do some tests to determine if he needs to stay? How long is a typical course of IV antibiotics?
Final question -- he is not on TOBI and I found out tonight that he cultures pseudomonas. Is TOBI something that can be prescribed over the phone? Would it help in an exacerbation?
Thanks in advance you folks are so very helpful.
How do you know when you need IV antibiotics?
My older son, age 20 is having an exacerbation. He has never been hospitalized (for anything, let alone CF). He has been on cipro over 3 days with no positive effect yet. He is using his vest 3 hours a day, and is coughing too much to sleep at night. When we called the doctor, he said all we can do now is take him to the ER if we want to. My question is -- what is bad enough to go to the ER? The doctor really didn't give me a straight answer on this.
Also if he does go there, will he be admitted for IV antibiotics, or do they do some tests to determine if he needs to stay? How long is a typical course of IV antibiotics?
Final question -- he is not on TOBI and I found out tonight that he cultures pseudomonas. Is TOBI something that can be prescribed over the phone? Would it help in an exacerbation?
Thanks in advance you folks are so very helpful.
Help with constipation
I've been using MiraLAX once a day and still pretty blocked and hard stools, is anybody else using something different I'm only going like once or twice a week. I'm so bloated and uncomfortable. I need some other methods thanks
Help with constipation
Looking for a thread started by a dad
The dad was lamenting that his young son had lost 40 points PFT in between office visits.. I think it was about two years ago.
Thanks for any one who can help me find the thread.
Salt and Light,
Jeanne
Looking for a thread started by a dad
Thanks for any one who can help me find the thread.
Salt and Light,
Jeanne
Looking for more information.
If I test positive for one copy of the R117H-7T mutation and 7T. Does this mean I have Cystic Fibrosis? I was told I am a carrier of the gene. I will not get into see a doctor for another week to discuss results. I am concerned and hoping for more information, if possible.
Thank you!
Looking for more information.
Thank you!
Looking for more information.
If I test positive for one copy of the R117H-7T mutation and 7T. Does this mean I have Cystic Fibrosis? I was told I am a carrier of the gene. I will not get into see a doctor for another week to discuss results. I am concerned and hoping for more information, if possible.
Thank you!
Looking for more information.
Thank you!
Looking for a little more information.
If I test positive for one copy of the R117H-7T mutation and 7T. Does this mean I have Cystic Fibrosis? I was told I am a carrier of the gene. I will not get into see a doctor for another week to discuss results. I am concerned and hoping for more information, if possible.
Thank you!
Looking for a little more information.
Thank you!
Good news
vendredi 4 septembre 2015
No news is good news…..just a general note to peeps on here how I'm doing. 35 years old (gonna be 36 in Nov, eek!) PFTs at 95 % and climbing, just signed up for a half marathon, working full time, living with a wonderful and accepting boyfriend, life is good. Feeling grateful.
That is all <3
Good news
That is all <3
Secondary Insurance Reputations
jeudi 3 septembre 2015
Hi guys, I'm looking to move to another state and will need to get a new secondary insurance. I currently have secondary insurance, so I can't be denied, and I have browsed the "complaint index" for various companies that I can choose from. I also have prescription coverage so I'm mainly just looking at hospital and outpatient service coverage (part A and part B). I've already talked to many resources about how to go about getting my insurance and have seen the ones I can choose from. I was just wondering from a CF perspective have you guys had better luck with certain companies over others?
Thanks in advance!
Secondary Insurance Reputations
Thanks in advance!
1,000 Posts!
Yay! After 10 years and 999 posts, I finally made it to 1,000 ;) Took long enough lol I wonder who currently has the most posts? Not that it matters. Just a little fun fact. I've enjoyed "meeting" new people that share the same roller coaster of life with me. Glad to know I'm not alone in this journey. I miss the chat room, forum games everyone could play, the old blog layout, the dynamic of the older website and of course I miss all the people we've lost along the way. As the world changes around us we have to adjust to new dynamics. But we still have all the memories. :) What are your memories? Hugs to all,
1,000 Posts!
Cystic Fibrosis Tag
mercredi 2 septembre 2015
Hey everyone, have you guys seen the Cystic Fibrosis Tag videos CFers are doing? From what I understand the CF foundation urged CFers to share their stories and what it's like having CF and The Frey Life started the trend of CFers making these videos on youtube. If you guys haven't already made one, try to do one and post it! It's a really great idea for spreading CF awareness.
Here are just a few so far:
Larry Brian - https://youtu.be/SesAz_01R2E
The Frey Life - https://youtu.be/Jwmjkqc6zes
HannahBreathes - https://youtu.be/-eEiwTl_qhc
Oh and use #CFAwareness if you make one and post it on social media. Lets get a movement going!
Cystic Fibrosis Tag
Here are just a few so far:
Larry Brian - https://youtu.be/SesAz_01R2E
The Frey Life - https://youtu.be/Jwmjkqc6zes
HannahBreathes - https://youtu.be/-eEiwTl_qhc
Oh and use #CFAwareness if you make one and post it on social media. Lets get a movement going!
Nanny with Special Needs Experience Available
Nanny with Special Needs Experience Available in NYC and surrounding suburbs.
I have many years of experience caring for children with unique medical needs, including g-tube/j-tube feedings and respiratory therapy. I truly enjoy watching these children grow.
I work closely with the child's medical team and therapists to encourage growth and development. My experience includes working with medical professionals and therapists, including: respiratory therapists, feeding therapists, speech therapists, physical therapists, and developmental specialists. When needed, I have successfully advocated for additional Early Intervention services that will benefit the child's growth and development.
Excellent references from long-term positions.
For a resume and contact information, visit my personal website http://ift.tt/1hUEUke.Note: this is NOT a nanny agency website.
Nanny with Special Needs Experience Available
I have many years of experience caring for children with unique medical needs, including g-tube/j-tube feedings and respiratory therapy. I truly enjoy watching these children grow.
I work closely with the child's medical team and therapists to encourage growth and development. My experience includes working with medical professionals and therapists, including: respiratory therapists, feeding therapists, speech therapists, physical therapists, and developmental specialists. When needed, I have successfully advocated for additional Early Intervention services that will benefit the child's growth and development.
Excellent references from long-term positions.
For a resume and contact information, visit my personal website http://ift.tt/1hUEUke.Note: this is NOT a nanny agency website.
Seeking vest model 105
mardi 1 septembre 2015
This is perhaps a long shot but I figured I would try. I'm a 32 year old CFer and my current vest(older model..received many years ago) is not quite working anymore and I am much need of a newer one. My insurance has already denied me which puts me in a very bad position. I've tried fighting with them for months but the best they can offer me is one for $16,000. I am on disability and have no excess cash, so I was hoping to find someone who perhaps had a 105 model that was not being used that they could donate to me at no or very little cost. If so..please email me at Ikarimalice@gmail.com Thank you very much.
Seeking vest model 105
Anyone knows?
Hello
So im declining fast, my lungs function dropped from 90% to 45% fev 1 within a few months
No antibiotics are working/recovering anything.
Also weight is going down fast.
I never had any issues witj cf before, not much atleast
Its really weird.
Its since a year or so.
Im thinking ive got ABPA
My currents symptons are:
- Coughing up dark green mucus with hard pieces in it.
- I feel like i constantly have to clear my throat, its harder to talk clearly.
- rapid weight and lungfunction loss, not responding to antibiotics used against my known lunginfection.
( i do eat like crazy and get more than enough calories btw. )
- tight chested, and often sticky mucus.
- tired, fatigued easily.
- sneezing sometimes.
- and highly sensitive to smells like parfume.
Has anyone ever had ABPA and does it sound familiar to u?
I heard its really difficult to diagnose ABPA.
My docs are looking for it.
Standart testing of mucus only.
Anyone got tips to diagnose or rule it out quicker?
And how was it to have abpa?
Hope anyone has some more expierence on this to share!
Anyone knows?
So im declining fast, my lungs function dropped from 90% to 45% fev 1 within a few months
No antibiotics are working/recovering anything.
Also weight is going down fast.
I never had any issues witj cf before, not much atleast
Its really weird.
Its since a year or so.
Im thinking ive got ABPA
My currents symptons are:
- Coughing up dark green mucus with hard pieces in it.
- I feel like i constantly have to clear my throat, its harder to talk clearly.
- rapid weight and lungfunction loss, not responding to antibiotics used against my known lunginfection.
( i do eat like crazy and get more than enough calories btw. )
- tight chested, and often sticky mucus.
- tired, fatigued easily.
- sneezing sometimes.
- and highly sensitive to smells like parfume.
Has anyone ever had ABPA and does it sound familiar to u?
I heard its really difficult to diagnose ABPA.
My docs are looking for it.
Standart testing of mucus only.
Anyone got tips to diagnose or rule it out quicker?
And how was it to have abpa?
Hope anyone has some more expierence on this to share!
Vests for sale for Hillrom
I have several vests for sale. I have a basic black one in a child's medium, a basic black one in a child's large, the new style blue one in a child's large, and a new style one in camo adult small. Not looking to get much for any of them just to help purchase medications. Let me know if your interested in any of them. Thanks
Vests for sale for Hillrom
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