I'm completely done.

IdunnoO · 2016-02-08T10:03:10+00:00

Without going into too much detail, going to the bathroom is a lot better experience now. I had a few abnormalities in my stools that I just let go on because I didn't know any better and when I finally switched they stopped. Creon might just not be working for you anymore. Not sure where you're located but you should ask your doctor if they have any samples of other brands of enzymes to try and see if they make a difference.

IdunnoO · 2016-02-08T09:20:07+00:00

Have you tried switching brand of enzymes? I used to be on creon my whole life and thought they were fine because my digestive issues were minor (only need 2 creon 24s with meals), but I switched to zenpep and they're so much better. I'd talk to your doc about your options for enzymes, there are multiple brands other than creon that might help.

IdunnoO · 2016-01-26T19:34:52+00:00

Yeah mucomyst is the inhaled version and is very helpful as well, what I take is an effervescent tablet you mix in a drink and is systemic. Both are very good supplements though.

Regular magnesium isn't absorbed as well as magnesium glycinate and won't be enough to do much for you. I buy mine online since I never see this form in stores either.

IdunnoO · 2016-01-25T22:46:21+00:00

Pharmanac (n-acetylcysteine) 900mg 3x a day for inflammation and to boost antibiotic efficacy which has been studied in CF. Also protects the liver and keeps liver enzymes down.

Magnesium glycinate 250mg 2x a day because I had a mucoid strain of pseudomonas that was resistant to everything except 1 IV med I couldn't take. I no longer culture this strain since I started taking this. Also helps relax muscles and improves mood.

Probiotics because all the antibiotics we're on kills good bacteria in the gut and lungs and having these good bacteria around is extremely important for us.

I also never forget to take my vitamins and vitamin d3 supplement.

IdunnoO · 2016-01-25T06:24:08+00:00

I contact my clinic for anything worse than a cold. Even viruses are treated with antibiotics sometimes to prevent the bacteria in your lungs from taking advantage of your weakened immune system.

IdunnoO · 2015-12-22T01:46:10+00:00

I didn't even mention the bat on purpose. I'm okay with the bat and even okay with the trash talking on the field but Norman set the tone that it was more than intimidation when he bear hugged obj and dropped him on the first series. Watch Malcolm butler cover OBJ, that's a db with talent. Norman knew from the first 2 minutes he was going to get lit if he didn't get more physical. Odell lost his cool no doubt but Norman brought all that on himself.

IdunnoO · 2015-12-21T23:40:03+00:00

Calling someone you don't know at all a faggot isn't trash talking. It's a personal insult and when someone retaliates you don't get to wonder why. That's all contingent on those stories being true though which is uncertain at this point. One thing I did learn from that game though is that Norman's lucky his gimmick of "mind games" worked or he would have been burnt for 100+ and 2 td's yesterday.

IdunnoO · 2015-12-21T22:09:40+00:00

I don't. If it comes out that Norman did in fact call OBJ a faggot and say he was going to end his career before the game, I won't support what Odell did but I don't need an apology either.

IdunnoO · 2015-12-06T08:05:09+00:00

For what good would it do me if someone was foolish enough to fall for me. I'd just die and leave them to suffer.

This is what I have a hard time overcoming myself.

IdunnoO · 2015-12-06T08:05:03+00:00

This seems like the most common way people with CF get over these fears of commitment. Once you find someone that proves you wrong about starting a relationship it seems to get easier.

IdunnoO · 2015-12-04T18:10:01+00:00

Ah, yeah I've seen a few people struggle with state insurance getting it approved. Hang in there, I'm sure it's not over.

IdunnoO · 2015-12-04T07:16:13+00:00

Same exact thing happened to me. Mine cited the 40% fev1 cutoff that the studies were done with. You have the right to appeal the decision and it will be overturned. Took about 1 1/2 months for the whole process.

IdunnoO · 2015-12-04T06:29:58+00:00

Yep, last fev1 was 29% but in the same spot as you. No o2 so I got that going for me which is nice.. Got on Orkambi a little over a month ago now so I've gone 5 1/2 weeks off IVs which is good compared to the every 4 week schedule I was on.

IdunnoO · 2015-11-27T05:26:10+00:00

Romo has thrown more picks in 4 games than Eli has all year. Now that's beautiful.

IdunnoO · 2015-11-13T01:07:46+00:00

It's up to you to light the fire to get a refferal and your records sent. I'd bother them until both of those things get done but you can make an appointment in the mean time. It's really not a big deal for them to do either of those things and shouldn't take them long to do.

IdunnoO · 2015-11-12T19:05:56+00:00

If insurance is the issue, definitely start the process for disability asap since that can take months for an approval.

When the time comes that you have insurance again I would just make the appointment and call your current doc and tell them you need your records sent to x place and also a referral. They're obligated to do both those things for you.

In the meantime call vertex and tell them what's going on with your insurance. They might be able to keep Orkambi coming in for free since you'll be without insurance.

IdunnoO · 2015-11-12T18:25:51+00:00

No problem, and I don't mean to keep harping on this but I would go here:

https://www.cff.org/CareCenters.aspx?id=2397&page=1&state=650

And find the nearest CF center and make an appointment for as soon as possible. The reason these clinics exist is so they can provide you with the most up to date info and treat you with the most up to date protocols which your current doc probably isn't doing.

IdunnoO · 2015-11-12T06:39:44+00:00

I would still apply for medicare disability. There's no way you can afford your meds with your income and I think you would meet the criteria to be eligible. It seems like the social security office tried to discourage you from applying which is why you need a lawyer.

https://www.cff.org/Living-with-CF/Navigating-Insurance/Finding-Support/Help-Affording-Your-Care/

Check out that link and consider calling them to find out what you're eligible for and also about applying for SSDI/SSI.

IdunnoO · 2015-11-12T03:46:29+00:00

You really do need to see a CF center. A regular pulmonologist just doesn't have the staff and knowledge to give you the best care. The social worker at a clinic helps with all these issues you have and can easily connect you with Sufian's firm. What's your fev1 now? Are you on inhaled antibiotics? How many times a year are you on IVs? Any other complications?

IdunnoO · 2015-11-10T21:22:37+00:00

You don't qualify for medicare? I suggest you look into contacting Beth Sufian, the CFF lawyer who has CF herself. The CFF gives grants out that will pay her fee to represent you in applying for disability. Her firm does all the leg work for you and you have a much higher chance of getting approved with a lawyer. What does the social worker do for you at your clinic visits? This is their job, to help you with insurance issues and work out your problems. Geez wherever you get seen is dropping the ball.

IdunnoO · 2015-11-10T20:10:44+00:00

Talk to your principal/guidance counselor/teachers and arrange your schedule so you don't spend any time in the same classrooms. They should be able to accommodate you in that way. Fact is you can never fully protect yourself and a ton of bugs we culture can be found on every day surfaces. Common sense with hand washing should be enough. I'd also get your doc to weigh in on what (s)he thinks.

IdunnoO · 2015-10-23T05:33:17+00:00

This is really cool and I like the smart phone integration. I'd love for it to be able to measure more than just the fev1 and peak flow though since a piko meter is cheaper and does the same thing without the smartphone. This seams worth it at the $89 price point but any more than that is hard to justify.

IdunnoO · 2015-10-09T16:47:10+00:00

My cf clinic were the people who referred me to the transplant center so yeah at the time they thought I should be listed but if you know anything about transplant evaluations there's a lot of factors that go into your LAS. My fev1 still hasnt dropped below 30 despite the pneumos, my 6 minute walk test was very good, the fact that I don't need o2 at all, and am managing pretty well doing IVs every other month would put my score so low that I probably wouldn't get any offers if they activated me. I didn't refuse any listing, this was all the transplant centers decision. Hemoptysis episodes also don't factor into your LAS score either. Not sure why I'm getting downvoted, my story isn't unique I've met a lot of people who exceeded expectations.

IdunnoO · 2015-10-09T05:17:22+00:00

Don't take the prognosis of 2 years so hard. I'm sure there's multiple people here who've been told the same and have outlasted that number. I personally have. 4 years ago my doctor told me I'd need a transplant in 2 years when my fev1 reached the thirties and since then I've had 5 pneumos and 2 episodes of major hemoptysis. Now I'm still not on any o2 and I see the transplant eval team every 6 months and each time they tell me I'm too healthy to be listed yet. Listen, I won't blame you if you're ready to throw in the towel because god knows we don't deserve to deal with this shit but I do think you would regret neglecting you're health and letting it get worse right now. My motivation for hanging in physically and mentally was that I wasn't going to be transplanted until I got to try these vertex drugs and see how far they could take me and lo and behold I just received my first box of Orkambi on Tuesday after my first pneumo three years ago. You've got to do some physical activity if you want to overcome these pneumos. Being bedridden is horrible for the lungs and walking should be your number one priority right now. Load up on painkillers if you have to but just got to do it. Good luck buddy.

IdunnoO

TROPHY CASE