I'm a 21 yr old CF patient with a 7 month old boy, and brand new to the forum. I'm married to a Navy sailor so I have Tricare Prime as my medical insurance. So far trying to get what I need when I need it has been a bit of a struggle. I was lucky when my husband was stationed in Charleston in that they have an AWESOME adult cf program there. Now we've moved and my worst nightmares are coming true! I'm currently going to Jacksonville, FL for my care, and was wondering if any knew a good place to get sent there. I'm really uncomfortable with staying with the doctor they've currently given me. Also, I was wondering if anyone else was on Tricare and they knew any good ways to help streamline their time consuming processes??Any help would be greatly appreciated!!!Tiffany 21 w/cf
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- Thread starter usngreer
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Hi Tiffany, My name is Liza. I have two teen girls with CF. My husband is AD/AF so I know the struggles you encounter with Tri-Care Prime. Please let me/us know how we may help you. My husband is an ENT/PA at EB here at Offutt. Where are you stationed right now? You say you are going to Jacksonville for your appts. As far as clinics to go to, we've never had a problem. Lucky I guess with where we've been stationed. The farthest we've ever had to drive is an hour, and that was when they were diagnosed. We were at Seymour Johnson AFB, NC then. That was 14yrs ago. As you can guess we're lifers in the military. I say "we" because even though Im not AD, the AF is my life too. Wow, CF and a Navy wife! My hand goes out to you. I've always thought the hardest wife to be was a Navy wife. Anyhow, off the subject. Have you looked to see what CF centers are near you? Is Jacksonville the only one? Do they have other doctors available at your clinic? My girls see all the doctors in the clinic but my oldest one prefers one over the other two. She's 17 and will most likely have to go to an adult clinic next year. It's time to retire after 25 yrs (26 when he actually reitires) and go home. So I figure when she goes off to college next year that she will have to go to an adult clinic then. How do you like adult clinic in general to the peds. clinic? Have you been married long? I was just wondering. Well Tiffany, please let me know if there is anything I can help with or even find out for you. My husband does all the interaction with Tri-Care and has had great success with dealing with them. Liza.
Hey Liza,Two teens with CF and living the military life?? My hat goes off to you too. <img src="i/expressions/face-icon-small-smile.gif" border="0"> You and your husband must be two really strong individuals.Well, I've only been married for about a year and half now, and we just got moved to his first permanent duty station in Kings Bay, GA, which is like 30-45 north of Jacksonville, FL. I think that if I were still seeing the pediatric doctors I'd be okay, because they're is usually an established CF team in any major city near a base. BUT there isn't always an established adult program. When we were in Charleston, SC there was an adult CF team and I loved them. Now that we've moved the closest adult program I believe is in Gainesville, FL...way too far away. Soooo, the place I ended up getting referred to doesn't even have a team of any sort, and the doc said that he hasn't treated a CF patient as his own for 2 years!!!! That right there made me a little uneasy. Then things like not doing a PFT because I wasn't feeling well, saying that he didn't think I needed admitted because I "sounded clear" (which usually doesn't mean anything in my case because I trap really bad,) and just his overall passive attitude towards my situation even though I told him that I felt like I could use a "tune-up" since I had been out so much longer than I have been for the past couple of years. You know, I really don't want to lose what progress I have made. I don't want to get to the point where I'm really sick before he admits me. But anyway, I'm rambling. (This all has me really upset.) I've gone to my PCM to try to get my referral doctor switched, but so far everyone I've talked to just doesn't understand. How do you explain to someone why you feel that this isn't the doctor for you when they're asking you questions like, "So when did you get CF??" But in general I think I liked the ped. clinics much more just because they've been established longer, and usually have more experienced doctors. But it's not always the case as I found out in Charleston. It just really depends on where you go I think.Soooo, I guess as far as helping me I would just ask how do you and your husband get the people you deal with as far as Tricare and the like to understand your situation and that it's not normal run of the mill stuff, and at times quite urgent?? I guess it doesn't help me in the fact that I am so young still when I'm trying to talk to these people. I'm a 21 yr old who looks 16 trying to talk to people who don't understand how much what I've lived with has matured me in a short amount of time. So really, I don't know if you can help, but maybe I'm just approaching these people in the wrong way, or contacting the wrong people.
Tiffany,I feel for you. I, too, am 21, and have had to deal with dumb doctors and insurance people recently. I have been with my Pediatrician for 19 years, and she's getting to the point that she's wanting to retire, so she takes a lot of time off, which leaves me to deal with doctors who don't know me and my history. A couple months ago I got a pretty bad sinus infection, and she was out for neck surgery, I had to see her associate, whom I'd seen a couple times. She realized the severity, luckily enough, but when I told her what my 'standard' procedure was, she refused to order that, and sent me to a specialty clinic. What should have been a simple sinus-clean-up-surgery with 3 weeks of picc line meds turned into a 3 week stay in the hospital, 15 IV's before a picc line, 3 allergic reactions, then surgery, then 5 weeks of at home picc line meds. On top of it, I was out of work for 8 weeks, and trying to explain to Human Resources that I'm not sick enough to be in the hospital, but I'm 'well' enough to stay at home and type on a computer, watch tv, etc as opposed to sitting at a desk and type at work... well, Thank god my Supervisor LOVES me. My favorite HR question was also the 'When did you get CF?' and I ended up in hysterical tears because she couldn't understand why I wasn't coming in while I had a cold, and that it really was CF related. UGH UGH UGH! Okay, had a lapse, I'm better now. As for helping you... Get ahold of your old Doctors. Tell them what difficulties you are having, and ask them to write to your new doctors, and insurance company. Most doctors who have a history with their patients are more than willing to do this. My mom actually had my Doctor's pager number, and after the 15th IV and 2nd allergic reaction, she called her at home. Within the hour I had a picc line and was transferred to the Peds department - at age 20! It may upset your doctor, I know it does many, but you've been the one who's been there all those years, and you know what you need. If the doctor gets upset, and requests not to see you again, which I've had happen sadly enough, then GOOD! That's not the doctor for you! I know I don't know it all, but when it comes to me, I am the ONLY expert. Doctors don't take care of me. I use doctors to take care of myself. <img src="i/expressions/face-icon-small-wink.gif" border="0"> Hope this gives you a little more courage, and good luck. Let us know!Alli
Hi again Tiffany, This is what my husband says you need to do. Contact the CF center at Bethesda Naval Hospital. Explain to them what is going on with you and see if they will contact your PCM and explain to them what is going on. Seems to me that they must not know too much about CF if they are asking how long you've had CF. Tell them what you told me. He says that having someone from your own service talking to you (your PCM being called by the CF doc in MD) makes things smoother than say an AF CF doc calling. My husband was amazed at the question of "how long have you had CF?" Please tell me it wasn't your PCM that asked you that. Anyhow, here is the info for Bethesda. The appts. number is 301-295-4919 it says the center director is Joel Schmidt, MD. How current that is I don't know. If that number is just the appts. line call base info for the CF clinic or the hospital information line to get the number to the clinic. If I have the time tomorrow I will call myself to be sure the number is correct. Having them explain the necessity for you to have a CF doc should get you what you need. I say even if it means going back to a peds clinic. You'll only be there a couple of years anyway. As for us we've done a great deal of moving around but haven't had too much trouble. We've gone from Champus to Medexel to TriCare Overseas to TriCare Prime. I have to say that the TriCare office we deal with right now is great. Overseas was great too. My oldest daughter was diagnosed one week before our youngest daughter was born back in 1990 and my husband was then sent off to Desert Shield/Storm six weeks after that. As a AF brat and now AF wife you just learn to deal with it all and plug on. I did however pack up my girls and go home to Texas for 6months when he went off the the desert. I just knew it wouldn't be a 30 day deployment. It's tough when you don't have your family nearby but you make friends and they help out if only to occupy your time. Just like they would if you didn't have children with CF. We were lucky then, my girls were in good health and didn't require alot of treatment time. We've had some rough years where sickness just didn't seem to go away, it just seemed to be one thing after another. But now they are doing well and we just hope it continues to go that way. Our oldest will be a senior in HS this year and is really wanting to go off to college in England. They got good care overseas so that part really isn't an issue. Just going is an issue! We were stationed in Germany, NATO, for three and a half wonderful years. We'd go back in a hearbeat if they'd send us. We did alot of research and preparing just to put in for that assignment. He volunteered. We got letters from her doctor saying she was not against them going overseas but did not recommend Italy or Asia and possibly Spain. My girls went to a Dutch clinic in the Netherlands and got great care. Well Tiffany, give them a call at the CF center in Bethesda. I hope they can help you out. Let me know how it goes. Like I said, I will try to check the number tomorrow if I can. My oldest has an appt. before I go to work tomorrow so I'm not sure I can get it done but will try. I want you to get what you need because I know it's out there we just need to find the right people to contact. Hang in there. Liza
HI Tiffany, No time for me to sign in, it's me Liza. Just wanted to let you know that the number I gave you for Bethesda is a number directly to the CF clinic. I just talked to them to check and see if it was an appts. line or what. The nurse sounds really nice. give her a call and see if they can help steer you to get the proper CF care. Like I said, just explain to her what is going on. She started asking me questions about your CF care I told her I didn't know but seemed like you knew yourself pretty well. Let me know if it helps. Lizano matter what service our husbands are in we all stick together and help out where we can.
Liza and Allimarie,Thanks for the tips. I've been kicking back the past couple of days so I haven't made any progress as of yet. I've also been kind of waiting to see if the Naval Clinic calls me back to tell me whether they gave the message to my doctor and what he is or isn't going to do. I still haven't received any word and I gave them the message about a week and a half ago. *sigh* So typical. But anyway, I'm going to try going to a Tricare rep tomorrow afternoon, and then I'm going to call that number in Bethesda, and maybe even call the clinic I went to in Charleston cuz they love me and want to see me get good care. <img src="i/expressions/face-icon-small-smile.gif" border="0"> At this point, I'd definitely have to agree with you Allimarie in that I'm going to have to use the doctor to take care of myself, but this doctor doesn't even want to give me the RIGHT tools. I was already on TOBI and Zithromax and getting sicker. He just gave me ANOTHER oral antibiotic (Cipro,) an oral steriod (Predinisone, which my previous doctor JUST took me off of because he didn't want me to be on it too long,) and a steriod spray which I'd already been taken, but didn't have anymore of (all of which I have been on for two weeks now and I continue to get worse.) No culture, no PFT, just questions to confirm that I had been on those things before and how much of each I had taken. Thankfully the person that asked me when I got CF wasn't my PCM, but it really didn't make me feel any better. I think my PCM is aware of what CF is, but doesn't really know anything beyond that. But if their nursing staff doesn't even know, and they're relaying the message I'm not sure if I have a prayer. But anyway, I'll let both of you know how it goes. I hope to have some type of success by the beginning of next week, because I really don't want to go to my next appt. with this guy on the 16th.Thanks again.Tiffany 21w/cf
Hey all,Just got a call today finally saying the my referral went through, BUT when I called to schedule an appointment they said I had one scheduled for Sept. 27th!!!! *sigh* Out of the frying pan into the fire. I asked if there was anyway I could be seen sooner and she said I'd have to talk to my PCM and have him try to talk to my doctor's secretary. *grumble* So it looks like best case senario I'll still need to keep my next appointment with the first doctor, because I'm getting worse every week. God knows what I'd be like after 2 months!! The struggle continues. In hopes of settling in with a good doctor soon,Tiffany 21 w/cf
Hey,Well, what's happened thus far is the day of my follow up appt. with the first doctor I was referred to I got a phone call basically telling me that since I was authorized to see a different pulmonologist I was no longer authorized to go see the first doctor. She said she would try to call Tricare and find out if I could go to see the first doctor until I could get in to see the second one. I called her back an hour or so later and she told me she had left a message with the person from Tricare she had been speaking with, and was waiting for her to return her call. She never called back, so I had to skip my appt. My husband has been keeping his command up to date as to my progress of getting a good doctor, and finally yesterday they sent him out to get me and go talk to the Tricare rep on base. They set me up with an appt. with one of the Navy doctors to access whether they needed to call my new doctor to tell them I needed to be seen sooner, (really I need to be seen sooner anyway because I'm supposed to be able to be seen within 30 days, so they're in breech of Tricare standards.) He was unable to get ahold of my doctor's office, but what he did do was call a pulmonologist at the Jacksonville base. Seems he's treated some CF patients. Soooo, I have an appt. with him next week to see what he can do. The doctor that I saw yesterday also set me up with a Tricare case worker. She seems really nice. The doctor that I spoke with yesterday even told me that the doctor I'm going to see Wednesday may need to admit me. Funny how that can be music to my ears. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Thing is my husband will be gone by next week, and my mom is coming down to visit by Monday so it works out perfectly. That's what I wanted in the first place was to be getting good medical help while she was here so she could watch my son. So the drama continues, but it looks as if I'm finally reaching a finale. <img src="i/expressions/face-icon-small-smile.gif" border="0"> *cross fingers*I'll continue to keep ya updated.Tiffany 21 w/CF
Tiffany, I am so glad to hear you are finally making some head way and are getting in to see a doctor. I was worried that you had gotten sick and had to be admitted while waiting to get in to even see a doctor. I hope this is the start to getting the right care. At least it will be with a doc that has seen some CF patients. At least then he knows what to look far and is familiar with CF. Be sure to let us know how you are doing and how it's working out. Liza
Got to see my new doctor yesterday! I think I'm gonna like him. He was asking all the right questions and making all the right suggestions that tell me he's familiar with this sort of thing. I told him I felt like I needed to be on some strong I.V. antibiotics and he said the magic words: "Well, if you say you think you need to be on some strong antibiotics right now I'm going to trust your judgment on that." *CHEER* I'm so excited. They actually tried to get the PICC in yesterday, but after 4-5 tries it was unsuccessful. So now, I believe the decision has been made to put in a port. I've avoided it for about 10 years now, but I think my veins are so shot anymore it's time to bite the bullet and get one. I'm really apprehensive about it though, but I don't really know much about them. At any rate, I think the ball is finally rolling, and I think it's going to be nice to not have to worry about Tricare as much since this is an actual Naval doctor. I won't have to worry about getting bills from hospitals that wait for forever and a year to put in the claims and send the bill out before they do!! Thank you so much for your consern and your help. You have no idea how much it was appreciated, and needed coming from someone who also has to deal with Tricare.Tiffany 21 w/CF