Polycystic Kidney Disease (PKD) Support Group
Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.
Hi everyone, I am very sick, I am 68 yrs. old and have my very first kidney infection. My kidney doc put me on something, I can't recall what it was right now, but I had an allergic reaction...my lips swelled up unbelievably with blisters all over them. They were red like apples, I looked like a freak! My tongue even hurt. Of course it was on a Sat. and I knew no one would be in the office, so I called my pharmacist, he said for sure I was having an allergic reaction to the drug, to stop taking it and to call my doc's office as someone would answer. I did that and I was shocked to hear that my doctor actually was put on the phone. He told me to get some phenagrahan (sp) and that I should feel better in a day or two, then to come in the office on Tuesday, which I did. He has noted that I can't take that drug ever again or anything remotely close to it, he also said that it wasn't uncommon for people in late stage kidney failure to have this happen with infections of any kind. Well, he's put me on something different now, nitrofurantoin mcr. Of course now I'am deathly ill, with nausea and vomiting but read that it's normal with this drug. I'am sure you are all smiling (sort of) as you have all probably suffered with this type of thing many times, but I have not and it feels really bad. I knew that you would want to know what I was allergic to so I went and got the paper and it was ciprofloxacin 250, a common drug used for kidney/urinary infections, it's just that I can't take it. Somehow it doesn't seem fair that I have to tolerate this type of thing at my age, but I guess thats what happens with pkd. I want you to all know again, how sorry I am that you all have had to suffer with this horrid disease in the prime of your lives. It's quite bad enough at my age, but I still think of all of you being so young having to tolerate this type of thing, well, it sort of breaks my heart, for all of you..
Just sharing as I'am so sick tonight that I know I will never sleep. Thank you all again so much for who you are and for being my friends and for having all the courage that you have...
lots of love,
Norma..
Just sharing as I'am so sick tonight that I know I will never sleep. Thank you all again so much for who you are and for being my friends and for having all the courage that you have...
lots of love,
Norma..
sorry to hear you are so poorly sending my best wishes to you and hope you feel better soon hugs and love.
Jukesy
Chewitt
when I had them I was hospitalized since they couldn't find the source of infection. I was starved and on IV for several days. the antibiotic was administered through the IV. each one involved a 6 day stay in the hospital, me kicking and screaming to go home where I could die in peace.
after my third infection post transplant I had my diseased native kidneys removed. this was MAJOR surgery and I don't recommend it except as a last resort. for me the threat of losing my transplant because of repeated infections made it a last resort.
cipro never worked well for me with UTIs and I am allergic to several meds in that class, Tequin and Leviquin. a UTI recently was treated with penicillin but my best treatment is plenty of water and cranberries as part of my diet to prevent UTIs in the first place. I use dried cranberries as opposed to cranberry juice because I know I am getting the real thing, not some watered down mixed fruit drink. there are also cranberry capsules available for those who don't like cranberries.
hope you feel better soon, keep us informed of your progress.
Love ya, Jen
I am so sorry you are going thru this hugs and prayers coming your way. Let the infection pass soon.
Nicki
Wow!
Sorry you're do sick!
Yeah. Cipro is a very strong drug.
Your doc should have at least warned you of allergic reactions. It is quite common. I was sick to my stomach when I had it.
When you're well, you might want tio talk with your doc on a bit of a deeper level.
You've been through so much...sometimes, some interesting thoughts go through your mind.
I hope you are able to put some courageous thoughts in your mind instead!
Peace and Blessings!
CoachRichie
http://www.InnerGameOfPKD.com
I am not a huggy person, but, hugs and chicken noodle soup to you.
Lhanley
I'm so sorry to hear you had a near life-threatening reaction (anaphylaxis) to the Cipro (the swollen tounge, blistering lips, etc.). Next time you have a reaction like that to any medication, especially with a swollen tongue, go to the ER. They will treat you quickly (IV meds to counter the allergies and nausea and find a new antibiotic that will be more effective and a test dose to ensure you don't react to it as well). None of this "find some phenergran" and call me on Tuesday business; anaphylaxis is serious business. FYI, the medication you're on now is commonly known as Macrobid.
As Helen said, kidney infections aren't that common in PKD patients. I've had one, caused by my one kidney stone and like Helen, I too spent 6 days in the hospital on IV antibiotics. Unlike her, I was on Cipro as I have an anaphylactic reaction to all penicillen-based medications (penicillens kill me; Cipro and their relatives will kill you). I've worn a medic alert braclet since I was a kid because of my allergy to penicillen. You need to add you allergy (list it as anaphlyaxis) to Cipro for your Medic Alert bracelet. And if you don't already have one, get one! This is nothing to play around with; if you're in an accident and can't talk, someone needs to know about your condition (PKD, hypertension, allergic to Cipro), especially because Cipro is a common medication given to patients in ERs (especially now that penicillen allergies affect a large percentage of the population).
Try to keep up with your fluids so you don't land in the hospital and try to keep nibbling on something bland so you have something in your stomach when you take your meds; it should help a bit. And if you can't keep anything down for more than 24 hours, please let your doctor know. It's worth the visit to your doctor for the bag of fluids to avoid a day or more in the hospital.
Very gentle hugs,
Ruth
thanks again everyone, I'am not 100% today but I'll be getting there before anyone knows it. I'am actually have to get ready for Mother's day weekend, I'am planning on playing this one up for all it's worth. My husband Jim does it up for the entire weekend, guess I'll do it too.
Oh wait a minute I just remembered something. Do you all recall that my doctor told me that he doesn't need to see me anymore and referred me off to his nurse practioner. The reason for that is because I'am stalled in stage 3 and he thinks I'am doing fine, therefore no need for a renal physician. If I'am in stage 3, is that considered end stage renal failure? when I had to go in on Tuesday, thats what he said to me, this is common in end stage renal failure. I've been here for two years now, in stage 3. I think I need to start looking for a new kidney doctor, or am I totally off base? thanks for your input and thanks for everything you guys do.
Love to you all...
Norma
You're by no means in ESRD. "Stalled" means you're plateaued at stage 3 and have been staying relatively stable for the last 2 years (those little bobbles in GFR, 42 to 38 can be simply based on what you ate the day before or your hydration status on the day of the test). This doesn't mean you don't need a nephrologist and that's not what he meant (although it sounds like he didn't relay that information well). It means instead of seeing him directly, you can be seen by his nurse practitioner instead. Nurse practitioners are outstanding care providers and many are as specialized as the doctors they work with. The NP will follow your labs and work any issues and if soemthing happens that requires a nephrologist intervention, he's right there and familiar with your case. Bottom line, this is a good thing. You continue to be covered by the same practice and have access to the same doctor as needed, just see the NP instead of the doctor on a regular basis (and I'd be willing to bet the NP already knows more about PKD than the doctor did when he first started to see you!).
Something to keep in mind with your labs if/when you get the ones that were run when you were diagnosed with the kidney infection is it will show higher than normal (for you) creatinine and BUN and those will persist for a period of time after the infection has cleared. This is normal; your kidney has been working hard to fight the infection and needs some time to recover. So don't worry when you see your latest labs; they'll be all over the map, but that's "normal" for someone with an infection.
I'm glad to hear you're doing better. Just keep taking it easy and keep drinking your water. And have a fabulous Mother's Day!
Lots of hugs,
Ruth
PS When you change your Medic Alert bracelet, also add PKD and hypertension; those are pretty important for doctors to know too! :)