I need a RANT

[willieandwinnie]

We had to go to DC yesterday for Len's appointment and I'm getting to the point I just dread going. We get to the 3rd floor transplant department and they told us that they have again changed where to get lab work done. This is the 4th time now in 7 months  and everytime we have to walk further and wait longer. Len said there was no way he could wait to pee until after the appointment and then walk half way through the hospital to the lab. Transplant nurse gave him a urine cup but said the lab probably wouldn't except it because it was different from theirs. Is that a bunch of shit or what, same hospital, same lab, I wanted to use kitkatz big  on more then a few of them. Anyway, Len has been complaining about the pain in his side and muscle aches and weakness, the transplant coordinator goes and gets the new transplant doctor that happen to be there and he came in and examined Len and talk to us about any changes that have been made to medications or daily living. He looked at the results from the sonogram of Len's groin and then said he remembered reading Len's very long history on the computer and he is the one that started Len on predisone and immediately called for us to stop it, and then he is the one that put Len on Imuran since he was only on 2mg of prograf and he didn't think that was enough. So he is sitting there talking to us and says that out of 1,000 transplant patients there are 2 that do well on just prograf and he is starting to think that maybe Len is one of them. Then they wonder why I think about going postal  He did say that he was worried about Len's quality of life and him feeling bad everyday, so he tells us to stop taking the magnesium and to cut back on the Valycte to 1 tablet 3 times a week, go get the labs done and he added a different one for Len's muscles and he would call us today if he believes that the Imuran is the problem. We walk clear across this huge ass hospital to the lab, where I kid you not, there must of been 100 people waiting. I just about lost it right there. After waiting an hour I finally pitched a fit and they called Len back. They give Len a urine cup and I produce the already filled one from my purse, the nurse looked at me and almost got the "I can't" out of her mouth and I was on her like stink on doo-doo. She took it and put Len's label on it, then she tells us she can't draw these 9 lab tubes out of his graph, and I went absolutely nuts. The head nurse comes and tells me that the doctor could write a note stating that I could stick Len's graph and they would draw labs from it. Am I the only one that thinks this is bullshit. By now my blood pressure is screaming and Len said to just let her draw it out of his hand so we can get the hell out of there. We almost had to get a second mortgage to get our car out of the garage and then fight traffic and post Pope nightmare around the university, the whole time I am on cell phone telling transplant coordinator what a pile of crap the whole situation was. You have an appointment but no labs, doesn't make sense to me or probably anyone else. So here I sit waiting for a telephone call to let us know really how Len is doing. Can you tell that I am frustrated??? I will say, the new doctor did impress me, he talked to Len a long time about everything he had been through and told me that my record keeping was the best he had ever seen. petey, he also questioned the home-hemo and I whipped out my certificate and he looked stunned. I can be such a bitch. He said he had never heard of everybody doing home-hemo so I told him about IHD and even wrote down the website for him to check us out. So he could be reading about himself already.  I will give the coordinator until tomorrow morning to call me and then I will start calling her about every hour until she tells me he's results. I already hated most in the medical community and it just seems to be getting worse. How could that be.  Thanks for listening to me yet again.

[monrein]

I'm howling at the moon right alongside of you.  That is crazy-making crap.  AAARRRGGGHHH.

[petey]

w&w -- this just sucks a big one!  I hate that you and Len had to go through all of that, but I'm so glad you were in your I'm-not-going-to-take-much-of-this-shit attitude (Len is so lucky to have you there for him).  Damn right that nurse was going to take that urine sample!  They screwed up the process, and they can't expect Len to hold that urine until they're ready for it!  But, isn't it just a shame that we have to insist, throw fits, and threaten with Kit's big stick?  We shouldn't have to do this to get what our patients/spouses/partners need, want, and deserve.  It makes me mad just thinking about you and Len having to go through this!      

Good thing -- you liked the new doc.  That's a plus.

Yep, I'd give that coordinator until 9 a.m. tomorrow morning to call me.  And, then I'd do as you plan -- call her every hour until she tells you something.  If she gives you the run-around, post her number here, and all the rest of us will call her repeatedly, too, until she gives you the info.  Mess with willieandwinnie -- and you're messing with one of us, Ms. Coordinator!      Kit -- get the stick primed and ready.  I didn't have plans to go to DC tomorrow, but it can be done!

[willieandwinnie]

  That's why I love you petey. You always put a smile on my face. 

[The Wife]

From what I can tell, the system is built for those who work in it.  If they had to live one day of this, meetings might be held to change what causes extra stress that patients and their caregivers just don't need.

Big big hugs to you.

 

[okarol]

So sorry! I went through the same "moving target" lab scenario and finally insisted that they give us a standing order at our local lab. So now the labs are done locally and then we schedule the in-person appointment 4 or so days later. It wasn't easy to get the standing order in place, I had to keep pushing, and there were several back and forth calls with the transplant nurse and the lab (it had to Quest, they wouldn't accept any other lab.) But now it works great and we have 2 standing orders, one for the full transplant related labs, and one that is for when we suspect there may be a bladder infection that we can do any time, as needed. The lab report is faxed to the transplant hospital and a copy is also faxed to our home.
I like the idea of publishing phone numbers and emails LOL - wouldn't that be fun!! 

[rose1999]

Sorry you have had to go through this.  What I find really worrying is what happens to those who don't have anyone to go with them and kick up on their behalf?  Len is lucky to have you - but he doesn't need me to tell him that I'm sure. 

[annabanana]

Len is lucky. But for those without caregivers I've been reading about "patient advocates" lately. I know some hospitals have them. I've actually thought that if Randy dies, I would become a patient advocate...because I know so much abouit it !Here's an article I found: http://www.boston.com/news/globe/health_science/articles/2006/05/01/for_when_a_doctor_and_a_nurse_just_arent_enough/

[willieandwinnie]

annabanana, I have family members and ex-in-laws that have ask me to help them and I do so willingly as an advocate for them. Our local hospital and most of the doctors seem to appreciate the amount of information that I will have written down when they meet up with us. Thanks for the link.

[willieandwinnie]

Ok, here's part of the scoop. The transplant coordinator called at 5:15 and said she didn't have all of Len's labs back yet, but the prograf level was low so they are putting him back on 1mg twice a day and stopping the Imuran.  Do I look like a bank or what. I'd love to have the money I spend on prescriptions that only have one or two taken and then thrown into the back of the cabinet. Anyway, his creatinine was 0.08 and BUN was 16. She said that some of the other test take 48 hours to get the results and she will call me. We'll see. I've talked to Romona and I'm hoping that once they stop the Valcyte some of this crap will go away.Time will tell I hope. Thanks for listening to me complain. 

[MyssAnne]

Oh man!! I so hate it when they stop/start medicines. Sheesh. Are they willing to give you samples??? That irks me so much for you!!!

I agree with Karol, try to get a standing order in your local lab.  Grab Kit's stick and swing away!!!!

[thegrammalady]

we need a raspberry blowing smiley. that said you know exactly how i feel about everything you guys had to go through. couldn't they have found a wheelchair for len to use so he wouldn't have to walk all that way.  labs are a big problem, at least where they wanted you to go was in the same comples (i'll grasp at any small bright spot) we used to have to get lab work done on my youngest. the lab the insurance company wanted us to use was miles from the doctor's office. so off to the lab with 4 small children. the lab couldn't run the test wanted.  so off  to wait while they tried to get an exemption from the insurance company (for the same day) to go to the lab at children's hospital, the only place in town who did that test. then off to children's hospital, which at that time was in downtown denver. (ugh) we had to do that every time kevin need that blood test because the insurance company refused to let him have all his blood work done at childrens.   
i know just how you feel. keep your chin up and a firm hand on that big stick.

[petey]

willieandwinnie -- I know what you mean about the prescriptions.  We have bottles and bottles and bottles of drugs in our pantry that the docs gave Marvin, didn't work, switched to another.   Even though I just have to pay a co-pay for them, that $25 (or $40 if it doesn't have a generic) co-pay adds up!  Makes me mad!  Why not just give a sample to see if it's going to work and then, if it does, fill a regular prescription?

But, hey, I'm liking Len's labs so far -- that creatinine looks really good.  When Marvin had his transplant, he was on Prograf and Cellcept, and that seemed to do the trick for him.  Is there some way to get Len's labs done locally?  When Marvin had his transplant, he did his labs once a month at our local hospital (it's a really small, band-aid station hospital that runs -- literally runs -- the other way when they see Marvin coming).  But, they could draw labs and fax them to Duke.  Then, Duke would call us the next day to tell us what they were.  At least it kept us from having to go to Duke for the labs.  I sure hope there's another way for Len to get his labs.

I hope you hear soon on the rest of his lab work.  Maybe she had a premonition about Kit's big stick!!! 

[petey]

heard anything else, willieandwinnie?

[willieandwinnie]

No petey, not yet. She said she would call me this afternoon, the one blood test took 48 hours for the results. I just came in from cutting the lawn, where were you? Len actually helped. I used the weedeater and he rode the lawn mower in the back and I did the front. I need to go to the grocery store this afternoon and lucky me, I get to go to the OB/GYN tomorrow. Does it ever end. 

[petey]

I just came in from cutting the lawn, where were you? Len actually helped. I used the weedeater and he rode the lawn mower in the back and I did the front.

Something told me this morning not to head up your way      !  Len took my turn!

[Lori1851]

Williewinnie,
Geesh sounds like you did have a suckey day!!!!!  Here's a group  hope that helps!!!

Lori/Indiana

[petey]

What did you find out at your doctor's visit, willieandwinnie?  I hate the OB/GYN visits, but, alas, they are a necessity, aren't they?  Men just don't know how lucky they have it!  Have you heard anything else from Len's lab work?

[willieandwinnie]

Well, I went to the stirrup doctor  as I call them, and he says he wants me to get a mammogram every 6 months (my mom died when I was 11 of breast cancer). I went through the change when I was 49 and he says my bones are paying the price and put me on yet another pill that this suppose to help build bones. Why in the world go they call these the golden years?? He is going to talk to our GP doctor because my blood pressure was 90/54 and he feels that is too low. Does it ever end? He says I'm not in too bad of shape for almost 55 and didn't have to much to say about smoking, which really surprised me. He is probably just passing notes to the GP and will let him do the reaming... Anyway, I don't have to see him for another year, which is just peachy in my book. He wrote me a standing order for the radiologist for the mammogram, lucky me 

No, petey, the witch transplant nurse didn't call me, so I called her and she had a recording on her phone that said she'd be out of the office until Monday. Lord, do these people really piss me off, I don't understand how I can have low blood pressure dealing with all this crap. I'll give her a piece of my mind Monday, if I have any left. I am now going to check your thread and she how you are.  for checking up on me. 

[jbeany]

Wonder how low your bp would be without the "help" from all of the transplant medical staff?   

[The Wife]

I like the idea of publishing phone numbers and emails LOL - wouldn't that be fun!! 

Can you imagine seeing the faces of the medical staff if any of us pulled out a list of 'our people' that will be contacting them when we're getting the run around?    

[jbeany]

Hehehehehe - set up alist and a time for everyone - have someone call every 10 minutes.  Okay - mean and evil, and not helping any other patient they've got, I know. . . but sometimes it's soooooo tempting to take the low road!

Makes me think of the good old days when we all first had faxes.  Some idiot telemarketer got my business fax number, and started sending junk on a daily basis.  I called, wrote, faxed, and begged them to take us off the call list.  I was running thru fax paper at a rate of a roll every other day, and the darn stuff was expensive back then.  No way to block the darn number then either.  I typed up a "Remove us from the list" demand on 3 pieces of paper, taped them into a loop so they would never quit, and started the fax to their 1-800 number before I left for the night.  I shut it off when I got in the next morning, and never heard from them again. 

That low road is tempting because sometimes it works!

[The Wife]

I typed up a "Remove us from the list" demand on 3 pieces of paper, taped them into a loop so they would never quit, and started the fax to their 1-800 number before I left for the night.  I shut it off when I got in the next morning, and never heard from them again. 

 

In my thread 'just sharing', I brought up the question of why we are not heard unless we raise our voices. If they would have respected you in the first place, you wouldn't have had to take the action you took but hey, it worked.   

[okarol]

I love that jbeany! 

[willieandwinnie]

This is how my crazy life is going. Len was suppose to go to dentist to get fillings done today. Well, our fun started last night, again. Len's stomach started bothering him again and he felt sick to his stomach. So he decided to take a reglan (to empty stomach) and some laxatives. I should of known then and there that it wasn't going to be a good night. Then our 15 year old cat decided that she was going to jump over the gate that I keep her in at night with and go screaming out the doggie door. It was pouring down rain and I'm in my nightgown trying to hunt her down. She has never climbed over our privacy fence so I finally gave up and changed my clothes and laid down. WRONG, Len is feeling pretty rough by now and is up and down all night. Sometime at o'dark thirty this morning, Mouse (the cat) brings in a mole and decides to play with it. Picture 2 yorkies going nuts (barking and growling) trying to get the mole from this lunatic cat. The cat is attacking the dogs and hanging on to the mole. I felt so sorry for the mole that I got it in a paper towel and let it go out front. Finally get animals calmed down and Len is up doubled over. Please God, is this ever going to get better. I finally gave up on sleep about 5 am and feed the pets and fixed coffee. Len didn't sleep much either so I called and cancelled his dentist appointment and fixed him breakfast. He curled up in his recliner and I laid on the couch and took a nap. I completely forgot about calling the transplant nurse, there's always tomorrow. I'm also thinking that I am going to call the GI specialist that Len sees and maybe he can change some medications or something. This is really getting old. If the transplant nurse doesn't do what she is suppose to do, I will post her number here and I bet it will be the last time she ignores me. Thanks for listening to me again.