Searchingforanswers

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anonymous

New member
Hi,

In the seemingly endless quest for an explanation for the strange state of my health I just discovered that Mild CF is an actual condition rather then something I've half suspected but thought was impossible. I stongly suspect I am either a symptomatic carrier or else have Mild CF. My younger brother also has similar symptoms. My concern is that as I can not afford the incredibly overpriced, non-suplimented company health plan & I have no insurance, yet I earn too much for medicare...even if there is a way to get tested that won't bankrupt me. According to ever piece of material I can find a CF diagnosis would make me uninsurable right? Is there any distinction made at all for mild cases? I would to get tested and whatever medication I actually need but lack of insurance and probable future complete uninsurability is a major concern.

I am currently 31 and my brother is a few years younger. My brother and I both have a history of chronic post-nasal drip and frequent colds. He got ear infections a lot as a kid, I got tons of nose bleeds. For both of us when we get sick it is almost always resperatory and very tough to shake. I'm not sure about my brother, but I seem to have insufficent air pressure to clear a snorkel or easily cough anything out of my system, yet my ability to hold my breathe is strong.

In the past 6 years my health has started going slowly downhill, my several times a year severe colds with green mucus were always a pain but the gunk always came up eventually, now some of it feels permenantly stuck and anything allergies, colds, just adds to it. I'm home sick today with my 5th cold this year and praying it doesn't end up deep in my lungs. Two days ago I was ona 20 mile bike ride then zap.

I'm seriously considering quiting my job and going somewhere else both for insurance and because they haven't cleaned the air vents in 30 years and that is NOT helping me.

As far as the sweat test I've never taken one but animals love to lick my skin for salt, and I can taste it on my own skin everytime I sweat. I get a fair amount of fluids but water causes me to become very naseous and/or start oversalivating so I avoid it. In otherwirds while I don't know for sure, I seem to be a salt-loser.

Is it possible to have partial enzyme deficiency? I can eat mostly anything (although I do seem to crave fats, oils protein, salt, and vegtables) but only in small but frequent meals. And as mentioned I positively crave salt.

I'm searching for advice and answers. Are there other questions you need to ask me? Is it likely that I have CF and if so any suggestions on how to pursue testing and treatment? How can I get and keep insurance? Any advise is highly appreciated.

Thank you
 
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chipper28

New member
There are a lot of people on here who can answer your specific questions, but I thought I'd take a moment to give you the bit I know.

I'm 25, but I was only positively diagnosed with CF a few months ago. Since going to the clinic, the pulmonologist has told me that there have been a lot more cases of what he calls "atypical CF" in the last few years. Interestingly, in addition to just having milder mutations, some of these "mild CF" cases appear to be a product of individuals having extremely high levels of physical activity.

My basic thought is: yes--it is possible that you could have CF, BUT don't get yourself too worked up. Everyone's sweat has some amount of salt and since saltiness is subjective, it's very easy to be convinced that you have salty skin just through apprehension. A sweat test should be under $300, so it might be worthwhile to just pay for the test out of pocket for your piece of mind. Then, you could make decisions based on that. Now, I should add that a sweat test is not definitive -- it's possible to have a negative sweat test and not have cf... but it would give you a huge hunk of information.

Only other thing I was thinking is: what's your brother's insurance situation? If he can have the genetic test, it will give you some partial information. Same thing if your parents have the ambry workup.
 
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anonymous

New member
Thank you for answering.

I have no idea what the ambry work up is, but going to my parents is a last resort. I've been thinking about talking to my brother for awhile, I hate using him as a guinea pig but following your suggestion I just gave him a quick call, dropped a tiny hint that I may have an answer for our mutual congestion issues and told him to call me tonight when he gets off work. This will not be an easy conversation <sigh>. Any suggestions there also appreciated. Will a doctor really give him the genetic test just walking in the door? We have no *known* family history of CF.

Are you still insurable? Do you know anything about whether the insurance companies are making a destinction of any kind between true CF and these lesser forms (I think even standerd CF should be insurable but thats another issue)

As for the salt I know it could just be subjective but the way animals love to lick me is probably a bit more telling....that and the way I seem to NEED it while practically rejecting water. Still lets say I take the sweat test and pay for it out of pocket (where would I do that?) if it comes up positive and/or my brother's genetic test shows carrier or CF status do I have to tell a perspective insurer or can I legally take insurance without declaring it and can they drop me for concealing it.
 
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chipper28

New member
No problem. I should qualify again that on the scale of CF things, I am a rank rookie.

Sorry for the jargon on Ambry. There are several tests available to genetically test for Cystic Fibrosis. Many of these only check for a certain number of more common mutations. The most comprehensive test, as far as I know, is a test that is published by Ambry. This test checks for over 1400 known mutations along with analyzing the codons of the genetic material for deletions... Basically, they check good.

Getting your brother checked. On a PPO, the main difficulty in getting a test for CF is getting the physician to understand what test to order. Sweat tests are really pretty cheap -- shouldn't be a problem if you're brother has any symptoms. Now, the extended genetic test that I was referencing is somewhere in the ROUGH ballpark of $2,000, so an insurance company might be more reticent.

In terms of being insurable. I have no difficulties on that front. I work for a private firm which has provided me coverage before and since the cystic fibrosis diagnosis. The thing I would be worried about is NEVER having insurance coverage terminated. If you do, CF will then be a preexisting condition when you have insurance again and won't be covered for something like a year. You can COBRA the insurance while you are between insurance. I'm not sure if this is something that varies by state, but that's what we have here. Am I correct that you are currently offered insurance through your employer but chose not to elect it due to cost?

Now -- I'm not sure where you are. I've been answering so far based on my US-centric view. For me, I don't know what kind of distinction insurance makes between different severities of CF. From what I understand, since I genotypically have CF and exhibit phenotypical symptoms, they call it CF. I think the "atypical" describer is more for the patient than anything else.

About doing a sweat test out of pocket. I actually had to pay for a sweat test temporarily because my insurance companies phone system was down (and the hospital was retarded). I don't remember the amount, but it was $300 or less. To have this done you will need a prescription. Who is treating you for these cold episodes that you are having? I'm assuming whoever has been keeping you supplied in drugs would be willing to write the prescription. If you really want to do this under the table, they can just write "sweat test for diagnosing cystic fibrosis" on a prescription pad and give it to you. You will then need to the Cystic Fibrosis Foundation (<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/chapters_and_care_centers/)">http://www.cff.org/chapters_and_care_centers/)</a> website to find out where the nearest certified facility is near you. Based on my experience, talking to the staff at the care center closest to you can give you good guidance.

Finally, on the legal stuff I have no clue. I've never had a lapse in insurance in my whole life (in fact was paying COBRA to have two for a while at one point when I was nervous). Hopefully someone else can help you out there!
 
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Mommafirst

Guest
I'll let others answer the things they know about.  But I
asked about the insurability issue when my daughter was recently
diagnosed.  And I was told that as long as she (and you)
doesn't let her insurance lapse for more than 62 days, an insurance
company cannot deny you for pre-existing conditions.  So if
you are insured at work, as stinky as that coverage may be, you
could be diagnosed now, switch jobs and as long as you don't let it
lapse, you will have to be picked up by their insurance company.
 Some companies offer supplemental programs (like Aflac) that
may have a program that you could pay for and add.  My uncle
did that for a cancer specific program several years ago and now
finds that it is paying off in spades, as he was diagnosed with
blood cancer in December.<br>
<br>
<br>
If you are not insured at all right now, I'd hold off testing until
you are insured, even if it is a lame plan.  You can always
switch plans, as long as you are under one continuously.<br>
<br>
I hope you find some answers!
 
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anonymous

New member
Day three fighting chest cold, had to sleep on couch to avoid keeping the husband up all night. Took turns between sitting up and clearing sinuses and laying on my right side to keep as much of the mucus as possible out of the permenantly congested left one. Cough is still non productive, drinking lots of gatoraide but can't eat much due to congestion related nausea. Trying to decide whether to go to work and take off another day as I get worse or stay home and hope this is one of the ones I can beat without antibiotics. So hard to cough anything up without gagging but I have to, almost got rid of some of it and accidentally swallowed<sigh>. I can feel it filling most of the top most lobe in my left lung around the permenantly congested section and spreading across the rest of the top lobe in that lung as well as into the central section of that lung. It feels like having tiny wood chips in my chest floating in a sea of half-melted celophane.

Talked to the brother last night, since he is still able to clear his system after colds, even though it takes weeks to months he is reluctant to take a test that if positive has insurance implications. I warned him he may be where I am in a few years and to at least be very careful and aware of this risk...so it looks like we are back to me finding insurance, playing dumb, and then getting a diagnosis. Of course if I come up CF I would be suprised if he doesn't also. For anyone who has played the avoiding preexisting condition label game, please let me know the best way to play it. I'd like to find out whether this is CF/CF-related or something else as soon as possible...also what sort of doctor is the best to start with and how long do I have to avoid going to one before it is safe from the preexisting label.

We had a "discount plan" but they seem to be out of business now.
I like my job but I'm going to have to leave for insurance and better air quality <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
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anonymous

New member
To add to the insurabilty....Think about ALL the insurance you may want/need beside the health insurance. I don't know if you have a family to support. You may consider getting life insurance and disability insurance before pursuing a diagnosis. These would be near impossible to get after a diagnosis. (Maybe more than you want/need now, but what you would want/need down the road.) It can be pricey, but if you get a few smaller policies before diagnosis, and you come back negative you can always cancel some. If you come back positive, you won't be able to purchase more.
 
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chipper28

New member
Hey, this insurance stuff is definitely out of my limits -- though I did think about life insurance immediately AFTER the positive diagnosis came back. Hopefully someone with some experience will get over here. Hope you feel better, but you might want to think about going to a doc in the box or something. I know it can be hard without insurance, but not working has costs to. If you go to an urgent care clinic, they'll be able to prescribe you an antibiotic so that you can get back on your feet again. In my experience, I can seldom "just beat it on my own". . . I actually had a doctor who was trying to get me to do that for a while. He required me to have symptoms for five days before he'd prescribe an antibiotic. For me it was a formula for pneumonia and other more serious infections. I guess I'm just saying -- be careful.
 
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anonymous

New member
I try to share the little I know about pre-existing conditions and insurance. You need health insurance BEFORE you are diagnosed with CF. If you get diagnosed and then get health insurance, CF would not be covered for about a year. Some policies will vary, but 1 year is typical. And this insurance would HAVE to be group insurance offered by an employer, you won't be able to purchase a policy on your own (I don't think).

So lets say you get insurance through your employer then get diagnosed with CF. Six months later you change employers. Under the new policy group policy there may be a 1 year waiting period before it will cover pre-existing condtions. But HIPPA lets you count the time under your previous policy toward this as long as there is not more than a 2 month gap in insurance. So under this situation, you would have to wait 6 months before the new policy would cover CF items.

So in your case, once you have insurance (and you get a diagnosis), you may want to wait 1 year before trying to change jobs. If you have health coverage for 12 months, and then change jobs, HIPPA covers the 12 month waiting period for pre-existing and everything would be covered from the start.

Clear as mud, right?
 
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anonymous

New member
Day 3 second update:

Decided not to go to work today, continued taking Robitusin CF (The new version with phenylephrine instead of pseudoephedrine) and I think its FINALLY started helping along with the rest of my usual regimine. So it looks like I'm going to beat *this* cold of course going into the winter months I also expect to be sick again before this gunk is fully cleared and end up at the clinic <sigh>.

Five days has been too long for me to wait also ever since I ended up with the permenant congestion, three days is now the make or break point and if I have much residual mucus from the last cold then it goes down to 2 or 1. Convincing clinics to give me antibiotics before the five day mark is often difficult but I seem to keep prevailing when I really have to.

At the first sign of illness I take a very proactive approach, I have to. Immediate decongestant, halls defense every 2 hours, alternating with echinachea or cold ease the other hour, chicken soup with pepper and hot sause, hot tea, gatoraide, lots of rest, steam showers, vicks, careful sleeping position, ensure, and religious mucus clearing. I get both the flu and pnemonia shot every year and sleep next to an air purifier. Yes I know that is a lot of vitamin c but it is one of the water soluable vitamins so the worst it does is help get rid of the um mucus that makes it into my digestive system to put things delicately.

What is doc in a box? Is that like the pharmasists I keep consulting with <img src="i/expressions/face-icon-small-smile.gif" border="0"> They have helped me come up with this approach to colds.

Hadn't even considered disability insurance and that would make sense, life insurance also and health insurance all these things are going to be expensive though and we just bought a house.

Okay so just how much insurance do I want to get (in case this is the last insurance I can get...I don't have any kids) and how long do I have to wait after getting it before I can safely "discover" a reason to go visit the doctor.

Would you keep trying for private insurance plans all of which want to deny either me, him or both of us so far (and this is without a CF diagnosis....grrr) or get that new job first and hang on for the 3-6 months before they let me on the plan. (I love winter...not)What kind of doctor do I need once I have insurance? And would it be a mistake to ask for the CF test? Would the doctor be obligated to tell the insurance company that I suspected this before getting insurance?

I'm just so scared but I don't want to deterioriate healthwise and I feel like I am... just very slowly. I have really mixed feelings, part of me wants it to be CF just so the not knowing will be over and another part of me hopes I don't really belong here. Whatever happens you all are so nice and kind. Thank you so much for every drop of explanation and advice you are giving and pleae everyone try to stay well.
 
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anonymous

New member
The easy thing: doc in a box is what my friends in graduate school called the little clinics that you could do with a problem if you didn't have a doctor. The places that kids sometimes get physicals.

Ok.. on the rest, we are definitely out of my league. I get insurance through work in a group plan -- I'm pretty sure they can't exclude me or my husband. I can also be on my husband's insurance, but since my company pays for mine entirely it doesn't make sense. I hope someone has answers or you're able to do research to get answers to your money/insurance questions. If you had a CF diagnosis, I'd recommend a CF clinic, because at least at my clinic the social worker is a wealth of information about this stuff.

I'm really not sure about the timing of looking at the CF diagnosis. I didn't think about it when I had the tests ordered. Probably I should have and thought about life insurance and what not, but I just didn't think that way. For me, I think that getting more specific and global treatment has probably been of more value than being able to avoid preexisting periods on insurances.

There is a post right now in the adults forum which might interest you. The thread is called <a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=12243&enterthread=y">Planning for life as an adult CFer</a> and towards the bottom it has a long post about various types of insurance.

You have the right attitutde that figuring out the cause of your health problems is the right idea. Whether it's cystic fibrosis, or not, you'd benefit from regular and quality healthcare. If you can get on health insurance through either of your works, it might be worth it even if you have to pay some amount and have a waiting period. Getting into a good internist could hopefully get you referred to whatever kind of doctors would be of value to you... I don't know if this would be pulmonologist, gastro, allergist, ENT, etc. . .

One thing that I just thought of which might be of value to you is that even if you get a CF diagnosis, the preexisting condition clause is only for a year. So, it's not like your giving up coverage for life. Also, if you are under the insurance at the time that you get the test, I think that they should cover it even though you always had the mutations since it wasn't preexisting in the sense of receiving medical treatments...

Best of luck with it. I can't imagine not having a string of doctors to call when symptoms flaired up. I'm not sure I'd ever work at all if it weren't for pharmaceuticals. Are you currently not taking any prescription drugs at all?!?
 
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mic10467

New member
Hello, I am almost 39, late diagnosed at 18.  First of all, I
know that you must be feeling alone and scared about the
possibility of having CF, and the financial ramifications of not
having good insurance to cover this possibility.  I'm sorry
that you have to go through all of this.  It sounds to me like
you just might have CF.  I know it's hard to comprehend at the
age of 31.  Alot of the medical literature on CF to me does
not realistically cover how many people really have CF and the
various degrees of the disease.  I think only by reading on
this site and the other CF support site of Cystic-L, will you come
to comprehend all of the varying degrees of severity of cf, from
mild to severe, the incredible amount of late diagnosed people with
CF and their stories of life long health problems that were
 not properly diagnosed because of the medical literature
being inaccurate.  As hard as it is to fathom that you might
have CF, it might be the light at the end of the tunnel healthwise
for you.  It was for me.  <br>
<br>
As far as insurance issues, I can't be of much help in that
department.  I can give you the number of a CF legal hotline
which is, 1-800-622-0385.  It is run by Beth Sufian, an
attorney working out of Texas, that has Cystic Fibrosis herself.
 I live in California, but hired Beth to help me win my social
security benefits last year.  She's a great lady.  She
hosted a live web-cast that you can find on the CFF.org website
about insurance issue's, work issues related to C.F.  If you
talk to her, she could probably point you in the right direction as
far as the predisposed position of insurance questions regarding
getting diagnosed with CF before or after one gets insurance.
 If you live in California, you can qualify for a government
program called, the Genetically Handicapped Persons Program(GHPP)
that would cover all medical bills, if you are diagnosed with CF.
 I'm not sure about other states, but if you asked on the
adult part of the forum others might be able to answer that
question in relation to the state that you reside in.  <br>
<br>
Going to one one of the CF clinics would be a great idea.
 Someone posted how to find one of those earlier.  You
could also post the area that you live in on the adult forum, and
people might give you the clinics that they go to in that area,
whether their doctors are good, and they could possibly explain
your situation to their doctor.  I had to refer my older
brother to my doctor, when he suspected that his 3 month old son
had CF despite carrier testing before birth.  It kind of gives
the doctor a heads up.  Or even calling your local clinic and
explaining your situation.  They might be of help.
 Getting a sweat test would be a great initial help in
determining if you have CF.  Financially it's not too much and
it would help determine if you are on the right track in thinking
you have CF.  I am hoping that you find the courage to just
bite the bullet and go get tested.  Psychologically, it will
empower you as difficult as it is to fathom.  I know you are
probably really worried about the state of your health
deteriorating quickly if you do have CF.  Chances are, you've
been so healthy up til now, that you will overcome your infection
once you can get some antibiotics in your system.  Sounds like
your are physically active, and that has probably kept you very
healthy up to this point.  I would urge you to read as much
stories that you can find on the net about CFers being late
diagnosed, and talk to some of those people.  That would give
you a better understanding of how to handle discovering you have
CF, if you do find that out.  It would put your mind at ease.
 I'm sure alot of CFers would be happy to help you in this
department.  Please keep posting if you need anymore help.<br>
<br>
Best Wishes,<br>
Michelle 38 w/cf, brother 34 w/cf double lung transplant USC 10/05
 
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anonymous

New member
How are things going today? Just worried since you said you were going to try to avoid a doctor and meds.

Let us know
 
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anonymous

New member
How are things going today? Just worried since you said you were going to try to avoid a doctor and meds.

Let us know
 
A

anonymous

New member
How are things going today? Just worried since you said you were going to try to avoid a doctor and meds.

Let us know
 
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anonymous

New member
Days 4 and 5 update:

Sorry I'm so late posting, I went to work yesterday and just getting through the day took so uch out of me that I pretty much come home and fell right asleep. One piece of good news the company has FINALLY decided to clean the vents and is doing some small things to stop colds being passed in circles around the office. Hopefully that will help me and the other vulnerable indivuals.

On day five I finally started bring up some of the gunk although I've still got a long way to go. I'm eating mostly chicken soup with crushed red pepper, and black table pepper and fresh garlic which seems to help. If anyone wants the exact recipe the special chicken soup in one of the few really good tricks I know. I'm also still taking a lot of vitamins and fluids. I can at least feel some holes in the gunk clogging my left lung since I finally started coughing some of it up (still yellow rather then green thank goodness). The right side is still only slightly congested but as usual the left one is pretty bad but getting better...of course I don't expect to clear it before the next cold but maybe just mabe the combination of a doctor and clean vents will help.

I talked to a coworker (uninsured like almost everyone in the office) but with much more experiance then I have in getting sliding scale services and she gave me a phone number to a low cost clinic near the office. They will charge between 15-70 dollars for the visit so financially things are looking a bit better. I have an appointment on monday but its only with a general practioner they should be able to refer me to to sliding fee specialists though. Now I come back to advise time again...how much should I tell the doctor. Getting an antibiotic or some basic medication will probably be simple, should I be trying for a referal to a pulminologist and/or allergist (or some other sort of doctor), or am I better to get a referal from one of you to a CF center. Should I be persueing both lines of inquiry. BTW I'm jealous of those of you with fully paid healthcare and glad you have that safety net <img src="i/expressions/face-icon-small-smile.gif" border="0">. I'm also curious do the Cf centers only do Cf or would they also take care of most other lung problems/resperatory problems. i.e. could I get tested/treated for CF or a similar resperatory problem at the same place.


BTW I actually do have a log on of sorts it just keeps sending me back to anonymous even when I log in.
 
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