21 YO cf patient looking to move

[b4herbiesbug]

I currently live in the greater kansas city area and see the KU CF team regularly. I am looking at the possibility of moving to Phoenix Arizona. I have a roommate lined up if I do but other than that I would be alone with the nearest family over 2 hours away. I have more than just my CF to contend with as well as typical CF problems with infections and viral and bacterial pneumonia within the past year. MY past PFT was only about 55% average. At the moment I am being tested for TB because of some symptoms I have been having including small portions of blood in my mucus from the lungs. Other problems i have include the rare 2% with the liver problems instead of the major lung problems, Hypothyroidism, functional hypoglycemia non diabetic or pre-diabetic, postual orthostatic tachycardic syndrome, anomylous venice angyonoma middle right hypothalmus with increased risk of rupturing, gout, fibromyalgia, constant cysts on upper layers of skin as of yet undiagnosed and non cancerous, aspergers, shingles, overactive bladder, as well as being immune to some regularly used antibiotics, told i will need liver transplant in the next 5-10 years- has been in pserosis, and gal stones regularly, having trouble keeping on weight past 123lbs have been down to 108lbs in the past year and i am currently on another downswing of weight, needing pain medications regularly for over 5 years now by necessity(quality of life) not addiction.

what i am looking for is a facility that can handle all of these problems as quickly as possible. i have been told in the next few months i will need another go to the hospital for IV treatments. the thing is if I am to do this it will need to be within the next 2 months. I am a very complex case most medications don't work on me normally and have adverse reactions so I need someone with decent pharmacology knowledge as I am getting now. I have contacted the Phoenix clinic and Tuscon clinic. Both are small and truly unable to support all of the needs I have with all of my diagnosis and I am asking for any help possible on where to go for help.

I am willing to listen to anything, Thank you for reading.
on the poll I want to hear if it is possible or should I stay where I am.

 

[Aboveallislove]

What are the "pros" of the moves?
What are the "cons" besides the medical issues you note?

 

[b4herbiesbug]

pros: moving out of kansas less allergies, have a couple friends there and a boyfriend wanting to go to school there at asu(biggest reason)

cons: closest help is 2 hours away for family and no doctors have agreed to see me there as of yet even a primary and i would downgrade in insurance so most of my disability would be put towards medical instead of living costs

just looking for any possible way

 

[Printer]

Find another boyfriend and stay near family and Doctors in Kansas. You have many too many medical issues to endanger your life by moving now.

Bill

 

[Ratatosk]

Correct me if I'm wrong, but I don't believe Arizona does lung transplants any more, so if that's something that could occur in the future...
There have been a few people on this site who live outside of Phoenix -- Tucson?, who've complained about the quality of care or lack there of, so I'd make sure to check out the CFF website in terms of clinic rankings.

Add to that a VERY dry climate. Very hot climate during the summer. Dust storms, potential for valley fever, allergies from plants you're not accustomed to....

 

[Aboveallislove]

It might be "possible," but it doesn't sound from what you said that it would be a good idea; to the contrary, it sounds like a horrible idea. I hope he wouldn't want you to move under these circumstances either. It sucks. No way around it. I am so sorry.

 

[b4herbiesbug]

It might be "possible," but it doesn't sound from what you said that it would be a good idea; to the contrary, it sounds like a horrible idea. I hope he wouldn't want you to move under these circumstances either. It sucks. No way around it. I am so sorry.

Thank you for the answers, and I was simply exploring the option, he didn't even ask me to do this I was just seeing if there was anything out there

 

[ethan508]

Option C) ask the boyfriend to find a school within driving distance to appropriate medical treatment. The reality is that finding a good academic program is going to be easier than finding a good CF care center.

 

[triples15]

I currently live in the greater kansas city area and see the KU CF team regularly. I am looking at the possibility of moving to Phoenix Arizona. I have a roommate lined up if I do but other than that I would be alone with the nearest family over 2 hours away. I have more than just my CF to contend with as well as typical CF problems with infections and viral and bacterial pneumonia within the past year. MY past PFT was only about 55% average. At the moment I am being tested for TB because of some symptoms I have been having including small portions of blood in my mucus from the lungs. Other problems i have include the rare 2% with the liver problems instead of the major lung problems, Hypothyroidism, functional hypoglycemia non diabetic or pre-diabetic, postual orthostatic tachycardic syndrome, anomylous venice angyonoma middle right hypothalmus with increased risk of rupturing, gout, fibromyalgia, constant cysts on upper layers of skin as of yet undiagnosed and non cancerous, aspergers, shingles, overactive bladder, as well as being immune to some regularly used antibiotics, told i will need liver transplant in the next 5-10 years- has been in pserosis, and gal stones regularly, having trouble keeping on weight past 123lbs have been down to 108lbs in the past year and i am currently on another downswing of weight, needing pain medications regularly for over 5 years now by necessity(quality of life) not addiction.

what i am looking for is a facility that can handle all of these problems as quickly as possible. i have been told in the next few months i will need another go to the hospital for IV treatments. the thing is if I am to do this it will need to be within the next 2 months. I am a very complex case most medications don't work on me normally and have adverse reactions so I need someone with decent pharmacology knowledge as I am getting now. I have contacted the Phoenix clinic and Tuscon clinic. Both are small and truly unable to support all of the needs I have with all of my diagnosis and I am asking for any help possible on where to go for help.

I am willing to listen to anything, Thank you for reading.
on the poll I want to hear if it is possible or should I stay where I am.

Hi there and welcome to the forums! I'm so sorry to hear that you have so many health issues in addition to CF. As if CF isn't enough.

I pretty much agree with the consensus here, but want to clarify one thing to see if I'm understanding correctly. You don't currently have a team in KC that is able/willing to treat all of your conditions? So whether or not you move to AZ, you will need to find a new center?

I'm from Nebraska and the University of Nebraska Medical Center in Omaha has a pretty great CF program, and hospital in general. It really is a hop,skip, and a jump up the I-29 from KC (about 3 hours). I would suggest maybe getting into contact with them and seeing what they think? You could certainly relocate there, but otherwise the travel for clinic visits etc. would be doable if you stayed in KC. Have your boyfriend look into the University of Nebraska. It's pretty awesome. (I'm not bias or anything). You would still probably be contending with allergies, but NE has some of the best air quality around, and Lincoln is a great college town.

Anyway, just some thoughts!

Take care and best of luck to you!

Autumn 34 w/CF

 

[triples15]

pros: moving out of kansas less allergies, have a couple friends there and a boyfriend wanting to go to school there at asu(biggest reason)

cons: closest help is 2 hours away for family and no doctors have agreed to see me there as of yet even a primary and i would downgrade in insurance so most of my disability would be put towards medical instead of living costs

just looking for any possible way

Hi, me again! I just noticed this response and wanted to mention something... If you DO decide to go to AZ, from what I understand they have a pretty great insurance program for the working disabled. They define "working" loosely, and there are no certain number or hours etc you must work to qualify. If you worked even just one day a week, or one day a month you'd qualify. I know it would be hard to find a job like that, but wanted to mention it. I have a friend with Cf who lives in Phoenix and uses this program and she pays virtually NOTHING out of pocket for healthcare. So if you could get into this program your healthcare costs would likely not go up, and maybe even go down.

Here is a link to the program:
http://www.azahcccs.gov/applicants/categories/workingdisabled.aspx

On the downside, the state run healthcare is the one that was not covering lung transpants in Arizona, as Liza (Ratatosk) mentioned. I remember there being a big issue about it a few years ago, and I'm not sure whether they started covering them again or not.