Well, isn't this something!!!!!

The phone rings, and it's the neuro's medical assistant. I say (in a very slow, deliberate voice......."oh, it's only been 7 days since I spoke to you and I haven't got a call back from the neurologist".

She replied: "We just want you to know that she read your fax, and she knows what happened and she wants me to let you know that she called up the (couldn't understand her because she has a very thick Russian Accent), but I understood her to mean The Visiting Nurse Company.

So I said "and what happened". And she replied "well she asked them why they never reported what happened???" and I replied: "Well, what did they say?" and she said "Well, they haven't responded yet" She is waiting on their explanation!!!!".

Then she said "And now I have another question for you, HOW IS ALAN AFTER ALL OF THIS?" And I said "He is just fine NOW, but the day after the infusion he came down with a temp of 101.5 and I had to do the alcohol rub thing but he was fine the next day, and he's fine now.

Then she said "when is his next appointment with Dr. G?" and I said "okay, we have to discuss something and PLEASE LET THE DOCTOR KNOW WHAT I AM ABOUT TO TELL YOU".

Then I proceeded to explain about how Alan saw the podiatrist and how he will let Alan know next tuesday if he is to be operated on!! I told the medical assistant, "We might have to re-schedule the next IVIG because Alan might need the operation. So please tell the doctor this.

Then I told her "Next tuesday, when I find out if Alan is to be operated on and when, I will call your office, okay? and she said fine.

So comments anyone?? I believe I behaved quite professionally!!!!

Melody

Good job, Mel. By the way, the Visiting Nurse is required to make out a report on what happened and to report to the doctor. It is requried that they notify the doctor, not just a nicety. It is required when a medication incident happens that the RN let the doctor know that there was an 'incident' whether it be an adverse reaction, a mistaken dose, mistaken time, mistaken patient, etc....and not in her own sweet time either, but as soon as it comes to light that an error was made. The doctor then gives his/her response as to what to do regarding the 'incident', such as monitor vital signs, or call 911....whether the nurse is responsible or the patient just has a reaction, this is standard procedure. Your doctor was deprived of the ability to act on your behalf when he/she was not notified of the 'incident' when it occurred.

At this point it speaks to the ethics of the organization that is giving out the care....and it speaks volumes in what was not done. We don't seem to live in an honest world anymore. The lack of ethics amazes me. The actions of the nurse, were simply buried. Hundreds of thousands of people die due to drug mistakes or interactions every year....consider Alan lucky.

There is a lot of room in medical care for mistakes. When they are found, they should be reported or documented so that these mistakes will not happen again. The caretaker needs to put more stopgap measures there to prevent them from happening. And this is extremely important...You have to police your own medical care! If you are not able to yourself, you need a spouse, relative or friend to help you.

Today I saw the doctor for the first time since the hospital stay. They were late getting to me and I'm sitting on a sacrum that is fractured along with the neuropathy, so you can all relate to the pain I was in. I waited for an hour and half. Not happy. Then during the visit, the doctor prescribed something for pain. When we picked it up from the pharmacist, we were half way home when I took the bottle out of the sack. I read off what it was and my husband said, " That's the wrong strength, I think." I had no clue, but I vaguely remember my doctor figuring out how much my liver could tolerate. And when I thought about it for a minute, I agreed with my husband. We did an about face and went back to the pharmacy. He was right. They had dispensed the wrong med.

Please take someone with you who can remember when you are in distress.

Billye

Hi Melody:

Too bad the people in that office aren't as professional as you are! This is the first I have read that Alan had that 101 degree temp the next day after the notorious "incident". That is just awful - you both are lucky it wasn't worse than that, in my opinion.

Shirley H.

Shirley:

And when I told Dr. Fred (yesterday, Alan had his visit), when I told Dr. Fred what happened, he just shook his head and asked Alan a million questions about various symptoms, etc. etc. He also ordered a whole batch of new blood tests.

I told Dr. Fred. "Alan dodged a bullet that day, didn't he?" And Dr. Fred said "absolutely".

If you ask Alan what he thinks about the whole experience, he just smiles and says "I'm in God's hands". Gotta love this man!!


And Billye: Thankfully, you read the bottle and got the correct prescription. I can't imagine how many prescription mistakes are made. When someone asks Alan what he takes at night to sleep, he always says ZANTAC. I gently say "xanax, not Zantac!!!! Actually he takes the generic Alprazolam, it's just too expensive to take the ambien and he just takes a small amount of the alprazolam and it calms the tingling and he falls fast asleep.

And he calls his blood pressure pills METROPOLO!!

And if you ask him the name of his diagnosis he bursts out laughing and carefully says 'Chronic Inflammation of Demylinization of polyneuropathy. Then we both get hysterical.

Kind of takes me back in time when Godzilla first came out. He told all the neighbors we went to see Gonzales.

lol
Melody


Melody

With Cyclelops and Billye, Mel I am glad he got blood tests but this
was very serious.
When we on our way home from the hospital last week,we stoped
at the Pharmacy, Bob handed Ann my perscription,she had a fit.
Sue that attending Dr. going to put you right back in the hospital,
I'm allergic to Penicillian it was on my med sheet,well she picked up
the phone paged him and let him have it. I heard her say very firmly
why do you ask or do you,and you had her med sheet and much more.
This happens far to much,usually i look glad i have a Pharmacist who
cares.
And good for you my in-laws were Russian and could speak very
very good english. That would and could cause probems,if your asking
questions and can't understand her. Oh well i bet she understood
everything you said. he he Sorry all this had to happen. to you all. Sue

About 15 years ago, a few months after we moved into this neighborhood, I went around the corner to the doctor. On my first visit, as is required, they took a medical background check. I had some kind of bronchial infection, and she prescribed a certain antibiotic.

When I went to the pharmacist, he ran the prescription through the computer and it flagged something. He called me over and said "aren't you allergic to pennicilin"?? and I said 'yeah, my mother always told me I was".

So he calls up the doctor and says "why on earth did you prescribe this antibiotic, it's in the pennicilin family and she's allergic to pennicilin".

You WILL NOT BELIEVE THE DOCTOR'S RESPONSE!!!!

She said AND I QUOTE" "Oh, years and years ago, people told their kids they were allergic to pennicilin and we always found out they were mistaken. People who think they are allergic, well they find out they are not allergic".
The pharmacist answered her "well, I'm not taking any chances with this woman, prescribe something else" And I got Eyrthromycin.

I will never forget that conversation. I also switched doctors.

Melody

neurologist's staff called you back, but a one week wait is really not as professional as I would have liked.
This is gonna be long: When I had my problems, I called every other day until I got an answer - if not from my neuro, from another in that practice. I called everyone! The hospital was squirrelley and evasive in their answers...So, I called the [presumed] manufacturer of the brand of IVIG I was SUPPOSED to be getting. THEY WERE SLOW taking a week! But I kept calling, and calling...Then, since I wasn't getting anywhere with the neuro or the mfr., I called the FDA and filed over the phone an 'adverse reaction report' At that time the FDA people were really nice and have been on other occasions about s/e's of new meds added for other issues.
Seems like the DAY after the call to the FDA I got a call from the IVIG Mfr...who I had to relay all the 'things' that happened again to [this takes about 30-45 minutes on the phone BTW]...Shortly after that, I saw my neuro [who'd probably gotten news from some 'grapevine'] and after my meeting with him my 'REACTION' was upgraded to a 'SEVERE REACTION'! ONce I found that out - I reported my events to the State Medical Licensing Board [another 45 minutes on the phone] - I'm thinking that between the FDA, Mfr, and State Boards...well, that infusion clinic was CLOSED [they only close for very MAJOR hodays] was closed for several days ...nurses told me later that it was for 'training'...They also kept dropping 'hints' to me after all this that 'they'd admitted 2-5 patients with reactions since I was last there, EACH TIME . Needless to say, I asked for and received a 'refund/credit' on a subsequent bill [paid for by my insurance] for the half day's dose they dumped in the trash when it was decided to disconnect me early...and just let me go drive home!
I am very grateful to the internet, folks here and other sites that gave me the knowledge to KNOW that something was more than seriously wrong on that infusion day! It probably was either an anaphalyptic[SP?] or cardiac reaction...had the nurses KNOWN to draw blood at the time of the 'reaction' there are tests that could have been done to track that...seeing the neuro 2 weeks later ...well too late then to determine which.
YES as Dr Fred said he DID dodge a bullet! I was checking the boards about 6 times a day with worry! I am grateful tho he didn't have the kind of headache I'd had with my reaction! Yeah there's the PN pain which usually is kicked down many notches with infusions, but this was like a week-long migraine from heck! I appreciate and truly feel for migraine sufferers! Take a vise and tighten it all around my skull till the brains pop out! I've a few 'grey cells' left tho..
Spoke about your 'bag' incident and about what that nurse did to MY infusion nurse today...and her first question was "IS THIS PERSON LICENSED?" And that YOU should have REFUSED infusion! IN NO UNCERTAIN TERMS!. Well, now you got it from a nurse who's done nothing but infusions for over a decade! For all kinds of things...she hates to do kids tho - says it hurts her to do them more than the kids hurt. Bless her!
Soo, keep records of who you've talked to about what and the dates and times...and all. Press your neuro to get you a COMPETENT service?
Hugs Melody...AND ALAN! I'm glad you are here to relay new episodes of this story! Next time you see Dr Fred, give him a hug from me as well...He sounds like he's one of the good guys! - j

Honestly, we were so impressed with her Jerry Rigging the bag over my kitchen sink (she hung the bags on the cabinets as she infused from one to the other, well, Alan and I were so impressed with her "FIXING' the problem, I never in all my life thought THAT I SHOULD REFUSE THE INFUSION.

And come to think about it, IT'S NOT MY PLACE TO REFUSE ANYTHING, It's Alan's because IT'S HIS INFUSION.

But I'm the one that speaks to doctors, I'm the one that speaks to medical assistants, visiting nurse services, blah blah blah.

Now, I'm petrified of the next infusion. He's has 9 so far. And the only problem was with THIS ONE and it was the only 3 HOUR INFUSION HE HAD.

We won't know if he's going ahead with the June 18th one because we have to find out first if he's having his foot operated on.

I wish he were the one to be doing all the phone calls and setting up stuff.

God knows, if he didn't have me, WHO ON EARTH WOULD DO THIS FOR HIM???

lol
Melody

YOU ARE AN INFORMED Spouse! That alone, qualifies you to SPEAK UP! Just say, 'this doesn't seem right...I want to speak to my neuro NOW...YOU NURSIE Get them on the PHONE NOW! Next The Pharmacist..do the SAME...You as a representative for your spouse have every right to express concern and have it addressed PROMPTLY as within 20 minutes BEFORE any 'tampered' blood product is put into YOUR ALAN! I expect Alan is very laid-back and accepting....this type of stuff calls for ASSERTIVE and often [as in my case-AGRESSIVE] ACTION... Alan has the heart issues, this is not something to shrug off! Not at ALL! Melody, we all know you are the nicest of Assertives, but you may have to get nasty agressive here...trust has been compromised...big-time...by all involved in the 'process'...

Don't be petrified about the next infusion...just be sure you get a more comptent set of Pharmacy/infusion nurses! That simple! Golly! At times I wish I was there with you to talk to these people! Their ignorance could kill us! Infusing IVIG is NOT changing a wound dressing for crikeys sake! It does take training and skill, and further training about what all to DO and LOOK out for! JUST LEARN from the Experience! Memorise all the info on the 'prescribing info' sheet! VERBATIM! Word for Word!

That's why I changed from a year of infusions AT A HOSPITAL,, cause they didn't know? to home infusions with a nurse who DOES KNOW! Believe me, I've got the 'times' it takes an ambulance to get from here [my house] to an ER down pat...it's far better potential for accurate treatment than I got IN the hospital IN their specialty infusion ward IN their cancer ward? Something is wrong in that whole picture, and it's not wrong with ME or YOU, it's the systems, and how well any home nurse is educated in such infusions...I don't know about you, but I want someone who KNOWs about this stuff and all it entails....to treat me...It's almost a quiz? But if that's what it takes, well you have to do it!

Oh dear! I wish I could be there to hold you-all's hands the next time! - j