A rant here or there... I'm feeling overwhelmed this week!

[Annig83]

Okay, so here it goes.
I have a few rants I want to bring up because this week has been the most stressful week ever! (And it's just now Wednesday!). 

Rant 1-  I have a new social worker.  She is the nicest, sweetest, caring person I have had help me in a long time... so what's the rant?-  She's also the biggest space cadet on the planet!  My renewal for transplant has come up for May (I've been listed for a year), and she sends me all the tests my doctor needs, Friday, of last week.  I have to have all my tests done by this Friday.  She also sends me an insurance card for IU Transplant (they pay for my tests, which is awesome!) however, she sent me someone else's card!!  Luckily, I brought this to her attention and she was able to send me MY card.

Rant 2- I had my stress test done on Monday this week.... I've never had one, so I didn't know what to expect.  I just had ankle surgery in January so I couldn't run on the treadmill.  They did a drug-induced test...has anyone else had this done?  IT WAS AWFUL!  I felt like I was having a panic attack!  I think I would have rather ran on that damn treadmill and take my chances with my busted ankle! LOL.  It also took over 5 hours...with the waiting and the pictures....and I am all for the elderly, I love most people...in fact it seems that now that I'm on D we have a lot in common ... but let me just say (and I hope no one takes offense), if you are over the age of 55... I don't believe you are decaying in anyway...LAY OFF THE PERFUME!!!  Oh my goodness!  Imagine being in a waiting room that is 12x10 and sitting next to someone who poured a whole bottle of cologne on themselves... I guess you don't even have to be over 55...just don't do it!  GAG!

Rant 3-  I had 12...12 vials of blood drawn Monday (after my stress test)... and while the tech. drawing my blood was extremely competent and nice to me...her supervisor was extremely rude and unprofessional.  Honestly, who keeps poking their head in to tell the tech. that "this patient is taking too long...why aren't you done?  You need to go to lunch so I can go!  I'm starving!"  Um, hello?  I'm sitting right here, and you are going to have to wait, since I'm dehydrated from being in the hospital all day with nothing to eat or drink, and my veins are the smallest pathetic things you've ever laid your eyes on! 

Rant 4- I had to go to the dentist today for my yearly check up exam, and for a cleaning...simple?  I think not.  This is my first visit to this place, and I hand the receptionist my letter and insurance for transplant.  This confused the girl and she had to call her supervisor, who of course wasn't there today.  After  30 minutes of waiting for things to get cleared... the dentist tells the hygentist that he simply can't see me without approval from my nephrologist.  Now this isn't my rant...I'm curious if anyone else has to have clearance from their doctor in order to have their teeth cleaned?  I'm all for safety and making sure that I don't get an infection from the dentist cleaning and possibly spreading some bacteria around in my mouth... my problem was that this new dentist acted as though I was incredibly stupid.  I asked why he had to get permission from my neph. because I had never had a dentist do this before.  While he was explaining, he talked "down to me" rather than to me.  He explained about how the mouth has bacteria, and even showed me a chart of a mouth on the wall... it was as if I was 4 years old. He then went on to talk to me about HEMO and how he felt that I was at risk...I'm on CCPD... I didn't have a problem with his explanation... it was how he said it...it was also because he didn't even bother to talk to the nurse I spoke with about my ESRD, or even open my chart that I spent 20 minutes filling out for them... I may have been oversensitive... I guess I have a very low tolerance for doctors or in this case a dentist who talks down to patients as if they know nothing about their condition...
Most people can grasp what's going on with them because they have been dealing with the condition for some time!  Don't dub it down, if I have a question, I'll ask you!  It seems like every place I go to that accepts Medicaid the doctors act like people don't know anything.  I have a bachelor's degree... if you just look at my chart!   
Anyway, my neph. did approve me for my cleaning, but he wants me to take antibiotics beforehand to be safe.  

I apologize for my ranting... it just feels like everything has been out of my control this week.  I told my boyfriend over the phone that I wish I was "normal" again. I know "normal" isn't the right word...maybe "healthy"?  It's so hard (as I am sure you all know) to feel like a person, rather than just a patient.  I consider myself a mom, a girlfriend, a daughter, a friend, but lately it's hard for me to be all of those things, when D and ESRD are hanging over my head.      

So now all that's left is my chest X-ray, my dental appt., and that icky pap test BLAH!  I know this will all be worth it when a transplant comes through... I'm just hoping next year my social worker will be on top of things, and my dentist will treat me like an adult!? 

[MooseMom]

And a very fine set of rants those were, too!!!  Well done!

My coordinator had been on the job for a total of three weeks before I met her.  She had been a dialysis nurse for 13 years and wanted a job change.  I liked her immediately.  She was smart, nice and pretty efficient.  When I got THE LETTER, I was told that I MUST come back to the tx center in a year's time for an annual re-evaluation.  I emailed the coordinator immediately and asked how I would be reminded of my next year's appt.  She told me that she already had an appt card made up for me.  "How efficient!", I thought.  Well, a year goes by and I hear nothing from them, and keep in mind that because I have an HMO, I need referrals for all of the cardiac tests.  Long story short, I had to remind HER to send me an appt card, and then I had to remind them to send me a list of tests they needed done so that I could get my referrals so that I could get the tests.  I learned very quickly that I was going to have to be the one to shoulder the load.  Now that I know that, I don't expect anyone to do much right, so I'm rarely disappointed anymore.  LOL!  If it makes you feel any better, I was really worried that they'd kick me off the list because I was so delayed in getting my testing done because THEY dropped the ball; I was supposed to have my annual re-eval in late July, but it ended up being delayed until November...again, their fault.  But they were pretty sanguine about it because they saw that I wasn't just ignoring things.  So I think that even though your SW screwed up, resulting in a possible delay of testing, you should be OK.

Oh yeah...the cardiac stress test.  I first tried the treadmill test but couldn't get my heart rate up high enough, so I had to go back and have the chemical test.  It's disconcerting, to say the least.  The first time I had adenosine, and it wasn't too bad, but the second year I had some new drug that was supposed to be better tolerated, but it made me feel woozy for about 30 seconds.  Having to fast didn't help.  And yeah, it all took about 5 hours because they have to take two separate sets of pictures.  It's a pain in the ass, isn't it?  I've never seen another female patient taking the test and having to wait in the little waiting room; I seem to always be stuck with old men who delight in telling me that they have only 40 percent cardiac function left.  Urp.  At least they don't wear cologne.  I'm almost 55, and it would never occur to me to wear fragrance to any medical procedure.  Ooooh, just thinking about it makes me ill.

I go to the same lab for all of my blood tests.  Every damn month, I'm there with my little Gift of Hope box, so I know the staff pretty well, and they know me.  When I had to have my one thousand mandatory blood draws for the tx center, I was fine until about vial six, and then I passed out.  Nobody's fault, just too much blood being taken.  It was not fun driving home.  I don't think I would have survived those blood draws right after the stress test!  You're brave to do that!  Did you do the draws and the stress test done at the same facility?

I'm shocked to hear about your dental experience.  That's just inane.  I didn't have a dentist, so I picked one that was close by, took in my tx form and explained that I needed an exam and why, and is this something they were comfortable with?  No one said anything about asking my neph first.  So, I made an appointment and got my teeth x-rayed and cleaned, and they filled out my little form, returned it to me and I faxed it to the tx coordinator.  The only issue I had was when the hygenist wanted to paint my teeth with flouride, and I told her "no" because I wasn't sure it was a good thing for renal patients.  Turned out I was right.

I've heard so much about docs who talk down to their patients, and I have not yet had the pleasure of dealing with someone like that.  I could SO LOVE to have THAT conversation because I'd delight in finding ways to toss about all sorts of renally specific terms that most dentists wouldn't begin to interpret.  LOL!  I did have a cardiologist consult once at my tx center who had the ego the size of a small planet, and it was all I could do to keep from laughing at him.  Far from being offended, I just get the giggles.

There is never any need to apologize for ranting.  An articulate rant is a thing of beauty!  A humorous rant is even better!  I give yours an A+!

[dialysisadvocate]

Rant 1 - This is how mistakes are made and a good thing that you checked this and caught the error - look at all paperwork to ensure your name is on such --- You might want to bring this to the attention of the facility administrator, although they won't do anything about it, probably

Rant 2 - Well, being quite over 55 lol - hmmm... I remember when I started in nursing, one rule was to never wear perfume as it might affect patients, especially strong perfumes -- and, no you don't have to be over 55 to drown yourself in perfume HAHAH

Rant 3 - Well, this also should be reporter to the person over the supervisor -- if it is a hospital, you can write to the administrator or call them. If this happened with you, chances are that this is happening with other patients and this interruption can result in mistakes being made ...this is the problem within our healthcare system, or one of the problems - people don't report situations and the situations continue..

Rant 4 - The Dentist was just protecting you but this business of 'talking down to patients' is disgusting and happens all the time, not only with dentists --Sometimes, doctors don't even realize they are doing such, and other times they DO --. Perhaps, just letting the dentist know how you felt might help

YOU ARE NORMAL _ but then what is normal? (SMILING)...THIS IS THE PLACE TO RANT -- RANT ON
this
opinions of Roberta Mikles BA RN - www.qualitysafepatientcare.com

[Whamo]

Stuff happens.  I'm pissed because my fistula blew up.  I went 5 days without dialysis, had a fistulagram, and a new catheter put in, and dialysis on the same day.  I spent the entire next day in bed recovering.  What really makes me mad is I was so looking forward to going back into the ocean this summer.  Now I have to get another two surgeries to get a new fistula.  That will eat up the entire summer.  I won't even be able to go into a swimming pool.  I'm glad I was a wave hog when I was younger.  I guess God thinks I've had enough waves.   When Janis Joplin sang "Get it while you can."  She wasn't kidding. 

[paris]

So many things happen that no one has told us about until it is happening.  You will find this happens a lot.  The dentist was correct. We always need to take antibiotics before even a simple cleaning.  Any open wound, however tiny, will always be a danger to kidneys or transplants.   The number of blood vials seems right --- I've been doing monthly blood draws for over 6 years. And no one told me the first time how many they would take --- guess they didn't want to scare me!  But, I wish I had known first.

Each year on the list, you will go through all the tests again.  I was so disappointed the second year, because I couldn't do the treadmill.  So, from then on, it was the nuclear stress test.  They aren't fun, but I did know what to expect before going in. That helps.

55 and elderly do not go in the same subject matter!!           Elderly is maybe 80!   LOL   

As you can see by the responses, each center/doctor  is different.    And regarding rants?  Come here and rant away anytime. We know how frustrating this whole process and kidney disease is.    We all take turns ranting ---- can't imagine what would happen if we all ranted on the same day!!!          Hope tomorrow is better.   

[Annig83]

Things are better today... and I apologize for catergorzing "elderly" as over 55   Like I said though... using TOO MUCH perfume causes me to lose my lunch    My parents are 66 and 65 and my mother tells me she's not old... she's "young at heart, and has enough sense to realize she's not decaying"   

[monrein]

The dentist issue is interesting to me as I have never had to take antibiotics prior to dental visits even for gum grafting.  My team feels that it is only if a patient has heart issues that this is necessary...however if I go ahead with two teeth implants I will up my prednisone on the day of the procedure and take antibiotics since they will be building up the bone at the site first.   The need for antibiotics really needs to be carefully assessed on an individual basis I think since we already use them way too often in Western medicine.

I go to the dentist twice a year, every year, without fail and my neph thinks that that would be too many antibiotics over the long term.   

www.medicalnewstoday.com/releases/68409.php

mdwhistleblower.blogspot.ca/2010/05/why-do-dentists-prescribe-prophylactic.html         

Talking down to us is one of the most irritating things we must cope with.

[MooseMom]

Thanks, Monrein, for your post because the more I thought about it, the more I wondered why no one had ever mentioned taking antibiotics before a dental appointment (and I have one coming up on Monday!).  No one at the tx center mentioned it (and they are the ones who are making me go to the dentist in the first place), the hygenist didn't mention it and neither did the dentist himself.  My neph certainly has never mentioned it.  But then again, I'm not on dialysis yet, so does that make a difference?  I do know that it is thought that gum infections can lead to and be indicative of heart disease, as your team seem to believe, but as that is not an issue for me, again, no one has said anything.

There may be a different protocol for tx patients, though.  With luck, I'll get a tx and will find out!   

Since I have a dental appt coming up, I'll ask some questions.

[cassandra]

I always had to take antibiotics (broad spectrum) before any procedure done at the dentist that included blood, while I had my dad's kidney. Sounds logical to me, as you have a compromised immune system with the immuno-suppressants.
Now on D I suppose immune system is pretty compromised too, but I suppose you could take antibiotics after you got the infection (?)
Pre D people have a compromised immune system too, so maybe also better be safe than sorry?

I think when the enormous amounts of antibiotics should go down, I assume they mean that antibiotics should not be prescribed in cases of the common cold, flew, headaches, etc.

[MooseMom]

It would certainly be logical to think that pre-D people have a compromised immune system, but I don't know if that is really true.  I DID take cyclosporine for about 5 years, but once my egfr dropped below 20, I was taken off it, so I can't really assume that my immune system is still compromised.  But I will ask next week as I am curious about this.  On the other hand, I am allergic to some antibiotics (specifically bactrim), so I don't want to have to take them unless it is really necessary.

[cassandra]

Definitely ask about it, and make sure you don't take Bactrim, or any of the 'working ingredients' in them.

good luck Cas

[Annig83]

Hey all, the dentist that I went to didn't want to do anything until he had my doctor's approval.  My D center was the one who prescribed Clyndamicin (broad Spectrum), they told me they just want to cover all bases in case I had an infection already brewing.  BUt after talking to the hygentist she said that most of the patients she sees have to take medication prior... I guess they are just covering their butts!?  My cleaning went good, but I have to have a cavity filled!  I've NEVER EVER had one before, until now.  I'm wondering if D is causing my teeth to get weaker?

[MooseMom]

I just suddenly remembered something.

About 10 years ago, I had my very first UTI and had to take Bactrim, which cured me with no problems.

Fast forward about three years, and I got a gum infection that was just awful.  I have a wisdom tooth that has only partially erupted, and apparently some food got caught underneath the gum and caused a most awful infection.  I've never had any trouble with my teeth or mouth.  I had just moved to Chicagoland, and it was a Saturday, so I found a dentist that was open and she prescribed Clyndamicin (I know this because I keep records of all this junk).  A few days later, I got another UTI, and once again I was prescribed Bactrim.  So, for a few days, I was taking two antibiotics for two different infections.  I did not think to tell my gyn about my gum infection.  And the result was the most florid case of hives imaginable.  I had NEVER had hive.  I could actually see and feel it spread from the middle of my back to the rest of my body, even the tops of my feet.  I can't remember if I stopped either drug...I doubt it, but as soon as I stopped the drugs, the hives suddenly disappeared.  So, I don't really want to have to take any antibiotics if I don't have to.  I have it in my records that I am allergic to Bactrim, but it might be the clyndamicin that did it, or maybe it was the two together.  I have made a note of this to tell U of W when I see them for my pre-eval later this month.

I'm still wondering if the reason no one has mentioned antibiotics is because I'm not on D yet, although six months ago when I went in for my regular cleaning, they asked me how dialysis was going, so they mistakenly thought I was already on it but still didn't mention antibiotics.

Yes, I think, Annig, they're covering their butts.  But if you feel strongly about it, you can refuse the antibiotic or just not take it.  Sometimes I think they try to scare us into compliance.

[Grumpy-1]

The dentist thing of taking antibiotics is quite normal.  I had a knee replacement and since then have to take antibiotics before ANY dental procedure.  But never had to get my nephrologist approval for dental work.  Grumpy.   Ditto on the OVER use of smelly stuff... Some of that can make you sick to your stomach.    The stress test,  I've had two - both chemical - and both felt like a panic attack.  Glad they didn't take too long to finish up.   Grumpy