Cystic Fibrosis and Florida? Live in Florida? Please Reply!

[emt]

Hi there!

Recently I have come to the realization that Oregon (where I currently live) just isn't doing it for these breathers of mine! Some allergy here just completely tightens up my lungs, leaving me reliant on albuterol (only giving me minimal relief) or desperate for the ocean air... I lived at the beach for 2 years of my life, and in those two years, I barely remember being sick! I was younger, so that helps of course, but even now I notice an extreme difference in my lungs when I get to breathing that salt in! The only issue is... Oregon is freezing, besides our two nice months out of the year. And that isn't enough for me! *greedy over the sun*

We have vacationed to Florida multiple times, and this last time we took the time to go over to Cocoa Beach... I fell in love almost instantly, and now, I am really hoping that moving to FL will be possible (we are looking on the west side now, Dunedin/Clearwater/Sarasota/etc). But, we have a million questions, most revolving around the medicaid program. I am single and have no income as I cannot work, so I am sure I can qualify for SSI, and I have found out that if you get SSI you can get medicaid in Florida (correct me if I am wrong).

So the questions... (I'll try and make this easy)
1. Does Florida SSI related medicaid cover 100%?
2. Who, in your opinion, is the best/worst doctor in Florida?
3. Have you noticed a difference in your PFT's/general health since your move to Florida?
4. How far from the beach do you live? How often do you actually go to the ocean?
5. Do you get in the water, and if so do you think that makes a big difference?
6. What town are you in/like best? Also, east coast or west coast?
7. Any other concerns, questions, things I should think about/things you think I should know about Florida, and the move there. Any advice appreciated!

Thank you so much in advance. I just know that doing the same thing over and over again, expecting a different outcome is insanity and that's not the boat I want to be in! I want to keep these lungs as healthy as possible, and that is why I am doing everything I can right now to keep them in fabulous condition. And as I continue that, I am hoping that the constant salty Florida air will help!

 

[ethan508]

I've only been to Florida twice, once for work and once for vacation. I liked my vacation there better than my work there . But both times I felt good health wise. It would awesome to live near a beach and be able to chill or surf or whatever in the salty air whenever you wanted. Anyway just wanted to say, welcome to the forum.

 

[emt]

Thanks! I felt wonderful when I was at the beach. It was pretty funny actually, in the morning when we left the hotel in Orlando to go to Cocoa Beach my o2 sats were 94 after treatments. When we got to the beach and had walked around a bit, they went up to 97, and then after a few hours of boogie boarding in the ocean they were 100! That 100 was after not having done treatments for over 8 hours! No albuterol all day (unnecessary), nothing! That alone for me was proof.

 

[Oboe]

1. My medicaid covers nearly everything. It doesn't cover flu shots ($30 at Walgreens) or supplements (I get vitamins for free with my enzymes), but apart from those things, I've paid maybe $150 total out of pocket in the past decade. It's pretty good. I don't know about the application process, though, it was all taken care of when I was still a minor. Guess that's an advantage of being born dirt poor.

2. I don't know about best. Shands Gainesville is the only transplant center in the region that takes medicaid, though, I believe. I was with them until I was 21 and they were very good, but were really hardasses about everything. Which may have been necessary, but it was still not fun to see them. I currently see Dr. Walsh in Jacksonville. It's a newer program that just got foundation certified last year or year before. They're pretty good, I think. There are no CF doctors in Tallahassee, if you move to north Florida you pretty much have to go to Jacksonville, Gainesville, or Mobile, Alabama to see someone. And I've never even been further south of Tampa, so I don't know what's down there in terms of clinics. You can always look up on the foundation's website for certified clinics.

3. Can't say, lived here forever.

4. Tallahassee's about an hour from the gulf (St. George Island or Panama City,) and about two or three from the ocean.

5. I've only been once in the past 20 years, about five years ago or so, and I got pretty sick afterwards, actually. Pretty nasty sunburn, too.

6. Tallahassee. I should move to Jacksonville since that's where all my medical stuff is, but my mom's here and it's a lot cheaper here.

7. Florida is very hot and humid in the summer. The beach is nice, but from June-September, it's actually pretty unpleasant go outside during the day.

Oh, and you're right. If you qualify for SSI, you automatically qualify for medicaid and food stamps.

 

[imported_Momto2]

OK, I cant really speak to FL, but we go to Puerto Rico every year for 2 weeks at X-mas and I always feel much better there. This past winter, I particularly noticed that my sats went from steady 90-92 up to 94-96 within 24 hours of arriving there. Something made a BIG difference, even though the condo we stayed in wasnt particularly clean. I was able to really reduce my prednisone there and didnt need as many nebbies...... it was wonderful.

 

[emt]

That is wonderful! Get back down to Florida girl!

 

[jaimers]

I don't live in Florida but grew up spending a lot of time at the beach and defintely Echo the things others have said about feeling better living in the salt air. I live at the beach now but in New Hampshire so since it's winter and we have approximately 28473738474656 feet of snow I haven't been outside much ?
the only downside is humidity. I grew up in central NC and it is horribly humid during the summer and Florida is defintely worse. It's stifiling and makes it really hard to breatH. I was just in Florida (Melbourne) for vacation this past week and it was already pretty humid, though temps were only in the mid 80s so it wasn't unbearable.

If if you're looking for good state programs and proximity to the ocean Massachusetts could be an option for you. Defintely cold winters but lots of coast/beach, and low humidity. MassHealth (from what I understand from others' experiences) is pretty good. Multiple choices for excellent CF and transplant centers in Boston as well.

Can't speak to the state/federal health coverage, but if you're wanting something with more similar to FL without quite as much heat and humidity NC could be a good option. NC also has really great beaches, a shorter warm season than Florida but still quite long, and UNC and Duke both have very good CF centers. I'm personally biased towards UNC because I went there for 24 years before moving to Massachusetts and then new hampshire.

 

[Sassyshasta]

When I lived in Florida, I did feel much better, especially after leaving an evening at the beach. We wouldn't usually go during the day. There were too many tourists and it is ungodly hot. I did get in the water. Advisable, idk... I do attribute it to part of the reason I felt so good leaving the beach. If you get in the water on a particularly wavy day. Your lungs can get some good physio. It was not uncommon for me to stumble out of the water hacking and sputtering the whole way, but I would feel great later.
We lived in Lakewood Ranch. It is a very nice community, south of Tampa and North of Sarasota. I would recommend it. Cost of living probably seemed pretty high at the time, but we live in Northern California now. Florida seems dirt cheap in comparison.
I saw Dr Layish in Orlando. He seemed very nice. I only lived there for 18 months, so my experience is limited. I've heard the Tampa clinic can be picky about whom they accept. (Until we lived in FL, I didn't even know clinics rejected people. I had to have my records sent to them to review.) My only experience with them is that they rejected me because I hadn't had my DNA typed.
I hope this is helpful. Best of luck!

 

[amber_cf85]

Hi There... I moved to Florida in 2003 (I was 17) from Michigan and have been here ever since...

1. I tried to apply for SSI once and was turned down. I am able to keep a full time job. But I've heard that SSI is hard to get down here
2. I go to the CF clinic at Shands in Gainesville. I see Dr. Mark Brantley and Dr. Jorge Lascano. The only other experience I've had with doctors is a long time ago I went to a regular drs office to be treated for a cold and was asked by a Dr what Cystic Fibrosis was... seriously.
3. My general health has declined a little bit but I don't necessarily attribute that to moving to a different climate. I've been here 12 years now. I think overall it has to do with just getting older and CF is becoming more of a challenge to manage. Ill be 30 in November
4. I live about 90 minutes from the beach and I never go.. too many people and it's too hot to be outside for long periods of time. Especially in July/August
5. When I do go to the beach I usually just wade around in the water - I don't actually swim.
6. I live in Brooksville which is about an 1 north of Tampa and a little more than an hr West of Orlando.
7. Just keep in mind that the heat can sometimes be a bit much. Like I said, It's too hot to be outside for long periods of time. July/August are the worst months for heat. I spend the majority of my time in the central air. Also keep in mind that Florida is not like other states when it comes to medical coverage. When I lived in Michigan I was under a program that paid for all of my Dr visits and my medications - I never saw a bill. I moved down here and it's either you have insurance and can get partial if not all of your medical needs covered, or you are pretty much screwed.

I also want to mention that the CF center in Tampa is more Transplant based. Not that they would not treat you, but from what they explained to me over the phone, they tend to accept CF patients that are close if not eligible for a lung transplant.

 

[wcherri]

emt, did you move to Florida?

I'm curious what else you may have found out since your original post. My husband and I are considering moving to Florida (from Chicago). The winter months are too brutal for us. We are looking for an accredited CF Center as well as a good Transplant center.

If anyone else has additional feedback, I would love to learn more about was Florida has to offer.

 

[saintoffeon]

I live 30 mins south of Cocoa Beach in Melbourne (hi Jaimers!):

2.) Dr. Zaki Elmaghraby is smart, friendly, and has a good sad/scared/BS filter, so you can purge to him, and he'll sift out the actual puzzle pieces and listen and work with you to get stuff done. He's also well-connected and open to helping out with working with insurance, specialty meds and devices, etc. Him or anyone like him is a good place to start, at least in this county.

3.) My health has gotten worse since I moved, but I have CF and got older. If anything, my annual decline rate got a tad bigger, but all things considered, especially with my personal choices and situations, my feeling is Florida either didn't hurt or might have helped a teeny tiny bit.

4. I live seven minutes from the ocean. This will amaze you, but I only go once every month or two. The beaches in Melbourne are not commercialized and touristy like they are on the order of Cocoa, and WAY less than somewhere like Clearwater. If you want a thousand bars and young people, the "life" is up in Cocoa, but I've gone to beaches by me and in the middle of the day, or afterwork, looked two miles in either direction and only saw a couple other people. It's rare to see a ton of people, and rarer to see lots of people "set up camp" with the whole towels and seats and umbrellas. It does happen, and there are events, and along the river they definitely have restaurants and stuff, so it's not business-free...but also, with exception to a few particular beaches, the sand is walkably soft with bare feet out for maybe thirty yards anywhere you go. (Maybe past that, but I can't swim so I don't know lol )

5.) I dip into the water, usually about waist or mid-chest. I think it helps like it does for normal people, but not especially different for me. Breathing wise, yes, it's reinvigorating, but I can't say I brought anything up more after, just felt...cleared out a bit, relaxed...less dry =)

7.) You said you have two good months? We have two bad months. It switches, and sometimes it might as well be expanded to three. Basically, somewhere into July there's a midpoint that stretches out a month or month and a half in either direction, and it's so inhospitably gross and hot and humid and miserable you genuinely wonder why they ever thought it was a good idea to colonize and settle this place, and why they didn't just turn around and find the next land. It's horrific and we all just adapt our lives to figure out what we can do indoors to hide from it so we don't die. It's that bad. It's worse in the middle of the state because they don't have the ocean breeze.

 

[stephen]

A prominent infectious disease doctor specializing in lung disease told me that that hot damp climates, like many regions in Florida, are breeding grounds for mold, fungus, and bacteria, and are not the best places for people with lung disease to live.