Where to get medical help?

[goofieslonglostsis]

Might not be online that long (nothing personal directed at any DISers ), but wondering if there's anybody that might be able to think along.

Am at the World until the 7th. Got a urostomy, obviously need to take care of that and the bladder and kidneys. Got myself a UTI gone up to the kidneys (what do you guys call them, poly something?). Seems like I always get one down here. Prev. treatment didn't work, back up didn't, only kept it pushing it back until beginning of this week. Called one of the companies that provide "house calls". Diagnosis will be right, knowing the symptoms, my body and how easy those strips are to read. Treatment; not so. Got antibiotics I told them I am not allowed because of negative experiences earlier within days of taking an AB in the same group and I shouldn't have any AB from that group to begin with because of my syndrome. They come with an increased risk of tendon inflammation and ruptures, which are already increased because of my syndrome. Am known with tendonitis (inflammation) and ruptures of muscles before. Very negative experience after asking them about prescribing these AB's, at first thinking it was an honest mistake. Doc obviously does not want to take my syndrome and personal trackrecord into account, where as other docs used previously through the same company did. Anyhow, stopped that "service" as there is a zero trust on my side in that doc after the way it was "dealt with" (read; ignored).

Should seek other medical advice, decided against it. Sounds stupid, I know. Decision made on, "oh well, I'll deal with the almost certain inflammation", don't know the risk of rupture, hmm". Biggest factor; we're flying back next week. 15 hours flying, 24 hours "on the way" in total.

Infection and meds aren't helping with it either, but my energylevel is so bad, it's pretty sure I wont have the level needed to make the flight. Heck, it's draining enough to make the trip to the main building here at SSR and we're really close. Prolonging stay or waiting out the infection wouldn't fix that, so want to make the flight as scheduled unless totally not possible.

Unfort, the AB don't seem to be working. Started 2 days ago, still dealing with symptoms. Know I need to get it checked out tomorrow if it's still like this. Do not want to cause damage, have a horrible flight or end up in hospital. I'm having a hard time deciding WHERE to get that help.

I know about CentraCare. Pro; close by. Neg; long waits, seems like experiences are about 50-50.
Celebration hospital; further away but hospital, but expecting long waits?
Other "house call" companies around?? Serious pro would be the energy saved by "house call". Would go with that in a hartbeat if it weren't for the downside; which one has a good reputation and can deal with the fact that I don't fit the statistics or standard "box" but they need to look at a picture that includes a syndrome not known by most docs?

I know I'll have to make the decision myself, nobody can do that for me. Just really not sure what to do, which to pick. So, curious about your experiences. Posting it on this board as I know those of us with "out of the box"-experiences tend to hang out here more than anywhere else.

One thing I've got going for me is that I do not have to worry about costs or alike. Health insurance basically covers each and all options and what isn't covered, is covered through my travelinsurance incl. transportation costs and all kinds of other costs.

 

[Mary976]

One possible advantage to the hospital emergency room is that you would hopefully get a solid diagnosis and treatment plan. If you need any testing or something like that, they can just do it right there. Also, ER doctors see a wide range of conditions. Granted, the wait may be long, but if you could get everything taken care of a once, it may save you time in the long run. We did have a good experience at Centra (near DTD) when DD had an asthma attack, but I have read differing opinions of them.

Good luck!
Mary

 

[LilyWDW]

Unfort, the AB don't seem to be working. Started 2 days ago, still dealing with symptoms. Know I need to get it checked out tomorrow if it's still like this. Do not want to cause damage, have a horrible flight or end up in hospital. I'm having a hard time deciding WHERE to get that help.

What antibiotic are you on? I have reoccurring issues myself and sometimes go 2-3 days before I really start to feel a difference. About day 5ish I am feeling normal. The symptoms will gradually fade. Did you not get any AZO or a prescription for UTA? That is how I survive until the antibiotics have time to deal with the infection.

 

[goofieslonglostsis]

I'm on levoquin. App the type of AB they also use when giving IV AB's? Didn't get prescribed anything else, but that was at my request. Can deal with the pain and spasms anyway and for me those are the only few hints something is up to begin with. So basically it helps me notice a UTI going on or not, and most of the times not catching it until it's gone beyond that.

Mary, you're right about the ER. I know you are, heck told my dad 2 days ago I would've sent other loved ones there, but not myself. That darned not endless energylevel and being "ah not to bad" too easily. Just told myself I've got until tomorrow (would be pill 4 of 7, so should be symptomless by then) and if still any hint of symptom; ER it is. They probably will not know my syndrome (do ER runs way to often, nobody ever knows about it unless they've seen me before oh and one Ozzie ER-doc and the DCL doc after reading up on it thanks to my med form ), but that's the same whatever option I would use. It just takes 1 doc willing to go "I don't know all, what's the info for you", looking it up online or contacting my own hospital and I'm set.

Thanks guys

 

[peemagg]

If you go to the ER they may be able to give you a stronger IV antibiotic to kick the problem faster. Do not hesitate to go if you need to.

 

[M5ward]

I'm on levoquin. App the type of AB they also use when giving IV AB's? Didn't get prescribed anything else, but that was at my request. Can deal with the pain and spasms anyway and for me those are the only few hints something is up to begin with. So basically it helps me notice a UTI going on or not, and most of the times not catching it until it's gone beyond that.

Mary, you're right about the ER. I know you are, heck told my dad 2 days ago I would've sent other loved ones there, but not myself. That darned not endless energylevel and being "ah not to bad" too easily. Just told myself I've got until tomorrow (would be pill 4 of 7, so should be symptomless by then) and if still any hint of symptom; ER it is. They probably will not know my syndrome (do ER runs way to often, nobody ever knows about it unless they've seen me before oh and one Ozzie ER-doc and the DCL doc after reading up on it thanks to my med form ), but that's the same whatever option I would use. It just takes 1 doc willing to go "I don't know all, what's the info for you", looking it up online or contacting my own hospital and I'm set.

Thanks guys

You turned down a particular antibiotic because it could cause tendon rupture? Is that right? You state that you are currently taking levaquin..is that correct? Just be aware that there is a black box warning concerning levaquin (and the quinolone family of drugs) because these meds can and do create tendon problems. My husband took levaquin for four days before his ankles started hurting; we informed the doctor(s) about this but they did nothing. His ankles got progressively worse even after being off the levaquin for months; we finally went to an orthopedist, had an MRI, and found out that he had a ruptured Achilles tendon in one ankle and a partial rupture in the other. He had reconstruction surgery on the totally ruptured ankle in May, but still has not gotten his strength back. We always list the quinolone family (all of them) as a drug allergy.

 

[Leajess99]

What about calling your regular doctor or urologist to have them just call in an antibiotic for you?? If they know your history and that you are out of state they may be more than willing to. Our ped has called in steroids for my youngest before while we were out of town. She knows my daughter's history with asthma so it was not an issue.

 

[arminnie]

I am allergic to so many antibiotics plus penicillin. The list grows every year. Sometimes I have to be hospitalized because the only effective antibiotics must be administered IV. So I deal with it.

 

[SueM in MN]

If you go to the ER they may be able to give you a stronger IV antibiotic to kick the problem faster. Do not hesitate to go if you need to.

Levaquin is a strong antibiotic, but it may not be the correct one to kill the germs that are causing the urinary tract infection (UTI).

Levaquin is used for:
* Complicated urinary tract infections (mild to moderate) due to Enterococcus faecalis, Enterobacter cloacae, Escherichia coli, Klebsiella pneumoniae, Proteus mirabilis, or Pseudomonas aeruginosa
* Uncomplicated urinary tract infections (mild to moderate) due to Escherichia coli, Klebsiella pneumoniae, or Staphylococcus saprophyticus

Prev. treatment didn't work, back up didn't, only kept it pushing it back until beginning of this week.

If you have a UTI caused by another germ, the Levaquin may not work.
It sounds like you already had 2 other antibiotics first, which did not work.
And, if you have a lot of UTIs and always takes Levaquin for them, the germs may have become resistant to Levaquin and possibly other antibiotics in the same class (Quinolones and Fluoroquinolone antibiotics). Resistance means that the germs are not killed by the antibiotics. When you take antibiotics, not every single germ is killed every single time. The easiest to kill germs will be killed off and the ones that are more difficult to kill will be left. That sounds like what happened with your first treatment and your backup treatment. Enough germs were killed to 'push back' the symptoms, but not enough were killed to get rid of the infection.
It's also possible that you not only have a UTI, but it has developed into a kidney infection or pyelonephritis.

You may need to get a urine culture done to see exactly what bacteria are causing the infection. The test the doctor did with the dipstick is a quick test that shows someone probably has a urinary tract infection - depending on the exact strip used, they test for nitrites or white blood cells (or both). Nitrites and white blood cells are usually found when there is a UTI.
Those quick tests don't show what type of bacteria are causing the infection. Without a culture to tell which bacteria are causing the infection, the doctor will just choose an antibiotic which has a great liklihood of killing the germs that usually cause UTIs. This is usually going to work, but may not if the patient has already taken antibiotics. In that situation, the doctor chooses the antibiotic that is most likely to work, knowing that you already took some others which did not work.

These would be my choices in order as a Registered Nurse:

1) Call the in room place that already saw and treated you. The positives of that are that they would already know what had happened and what antibiotic was tried.
Tell them that you have been taking the antibiotics, but the symptoms are not better and you are feeling sicker. They may suggest a doctor from their service see you again - you can request it not be the same one. Another possibility is their doctor might talk to you on the phone and/or send a prescription for another medication. A third possibility is they may say that you need a different level of care and would recommend someplace else to go (probably CentraCare).

2) Go to one of the Urgent Care Centers. The purpose of those places is to treat problems that are urgent, but not emergencies. They would be able to do any testing you need. Yes, you would wait, but not as long as in the emergency room. I believe they would be able to give you a dose of IV antibiotics there if needed. If you are referred thru the in-room doctor, it might ease things there. You could call and ask if they have a triage nurse you can talk to and explain your situation so that they can give an idea of whether you need to go to the ER or can be seen there. It may be that you need IV medication or just some IV fluids for dehydration and they may or may not be able to do those things.

3) Last choice would be ER because at this point, you have an urgent need, not an emergency and don't need ER level of care (unless told you should go there by Urgent Care or the in-room doctors). The ER would be the longest wait and you would be bumped by patients with more urgent needs. If Urgent care can do IVs, there would not be much the ER would do that the Urgent Care could not.

Hoping you get better soon and are well enough to make the trip back home.

 

[WheeledTraveler]

I hope you don't mind, but I've poked a friend who lives in Orlando and most likely has the same syndrome as you (she's in process of getting diagnosed) to see if she has any suggestions.

I'll either post here or PM once she's gotten back to me.

 

[dclfun]

I just returned from my transatlantic Magic cruise ( and a few days at the Poly) and just wanted to say I'm so sorry you got a UTI again this year. Drats! I'd follow Sue's advice as she's an RN and very familiar with US medical care. The only other advice I have is not to push your luck at flying home if you're still not feeling well. That flight to Barcelona was really rough for me, and I was lucky to get a free upgrade to Business Class which I'm sure made things a bit easier. Meanwhile iff you need anything delivered or a ride somewhere, I'd be happy to help you. Send me a PM!---Kathy

 

[Ashtyn]

I don't work at Celebration Hospital but another one that is also run by Florida Hospital. There is certain turn around times that our ER's must meet. The ER at Celebration is not nearly as busy as some would think. There are several in that area that the locals go to but wouldn't suggest you do. If you know what works for you and what doesn't then go to Celebration and tell them your history and what works. The doctors should listen and if in doubt they could contact your regular doctor at home for suggestions. The infection could become worse and you could end up in worse shape. I know that you have experience with this but so do I and I would like you to get the appropriate antibiotics to rid this infection.

 

[honeydiane1953]

If you go to the ER they may be able to give you a stronger IV antibiotic to kick the problem faster. Do not hesitate to go if you need to.

Yes go ASAP to zap it before it zaps u. nurse here.

 

[Tinker'n'Fun]

Levaquin is one of the antibiotics I can take and the negative is that is can cause ruptured tendons, so much that there is a class action suit against it also.

And just so you know, when I get an UTI my reports come back with a report that states if the strain is resistant to Levaquin. You may want to ask for that report when you are tested. Also, since you already started on an antibiotic a simple test may not be reliable, sounds like you would need a culture which takes a few days.

Hope you are feeling better soon. And for the answer to your original question, I would utilize the ER so that any extensive testing can be done at the same time. Since you are past the simple UTI stage, a clinic will be no help to you.

 

[Disneyadore]

Ik heb een keer gebruik moeten maken van een kliniek.
Disney zorgde voor gratis transport en ik werd gelijk geholpen.
Ook medicijnen ophalen werd geregeld door dezelfde taxi ( gratis) en daarna weer terug naar Disney. zorg voor een credit card met genoeg back up om te betalen.

 

[goofieslonglostsis]

M5ward; I am very very aware of the possible risks of levaquin. That is why I ran into a "discussion" with said medical company. They keep sticking to the "you're fine, no risk unless you take it longterm and most of them are male". That left me stuck with the "do I go get medical treatment elsewhere and totally stay of the levaquin or take the risk and thus safe some much needed energy for the flight?

What about calling your regular doctor or urologist to have them just call in an antibiotic for you?? If they know your history and that you are out of state they may be more than willing to. Our ped has called in steroids for my youngest before while we were out of town. She knows my daughter's history with asthma so it was not an issue.

Urologist doesn't do that. Can understand him on that one, he's coming from the "each UTI still is unique and needs somebody actually fysically seeing you, not just a blind prescription". He'll gladly back my story up on what I can or can't have etc. but will not prescribe without fysically seeing me himself.


Sue hit the nail on the head with the medical term, it's a pyelonephrytis. Thanks for the thourough respons! Didn't end up reading it, haven't found the energy to come back online after the last post I did. We did end up getting some other medical help as the symptoms weren't clearing up one bit. Unfortunately the company used is sticking to their stubborn opinion. I've developped many tendon inflammations because of the few levaquins that I did take up until that point, my overall file is very clear, but nop; they're right and those other things are wrong. Have to say, they were persisting in "offering help", while repeating and repeating the correct treatment was given, backed up by the medical director checking the file they had made up etc. (in which somehow no mention of my ehlers danlos nor the fact that I mentioned 3 times I am not allowed any of these types of antibiotics) Maybe stupid, but I totally turned them down. As long as they want to keep said doc on my case, all and any trust is gone.


Anyhow, got myself some other AB's prescibed through other sources. Doesn't seem to be the right one either. We flew back home yesterday/today. Just trying to keep myself awake for another 30 minutes, reducing the jetlag. So onto the DIS it is. Am beyond exhausted from the trip. Let alone a TSA-agent at MCO going nutcase, only minor wheelchair damage , my wheelchair van breaking down (fingers crossed it isn't totalled), ministry of internal and safety affairs involved in my trip, you name it. No time, energy or whatever to follow up. Will be calling the urologist's office on monday as I'm still not symptomfree. Knowing him that'll result in a hospital trip. Hopefully he can sent me on my way in no time, we'll see.


How was the cruise, Kathy? Did all go fine with the chair, medical stuff etc.? Thanks for the offer! The 6th we spent my birthday with a nice lunch at Kona and some good old "another getting some medical help abroad for the remember-when-laugh-collection". A bit easier? I can assure you flying business instead of eco made your flight a HUGE amount easier. It's not that biggie when flying within the US, but it is for basically almost every airline on an intercontinental flight. The reason I now only do business, eco isn't doable by a long shot. It adds up big time. More space, more room for more personal care, more peace and quite (unless you happen to run into snore-fest 2010 like I did last night ), much more seating positions to variate with etc. etc. I find even something as simple as doing a lounge before the flight/during a connection makes a huge difference as to waiting at the gate area in such a crowded, noicy space. The latter just drains me. You won't find me saying flying business WILL make any and all peachy. It simply can't. But eco sure does make it a lot more difficult than that. Just rather expensive.