Do you ever get frustrated???

[Romona]

As a patient do you get frustrated when you try to comply with all the test and things, but someone else screws it all up. I have had labs, coordinators, Doctors ect... mess up things. My pre-transplant cooridinator kept losing test result after test result. I didn't matter if I hand delivered or faxed. Doctors that never called in scrpits. Labs fax thing to the wrong Doctor in another state, I ended up in the hospital over that one. Labs that lost results.  But the one today takes the cake. I needed a test that can't be done by a private lab. I could drive an two hours to have it done or go to  a hospital that is affiliated which is only an hour. Today I drove an hour only to get to the hospital to find no one faxed my orders to them. It was very early so I couldn't even call my cooridinator to refax it. There was over two hours wasted for nothing. 
Just had to get that off my chest.



EDITED:  Moved post to correct thread "General Discussion" - Goofynina/Admin.

[glitter]

It is a shame, but it happens to us often as well. We used to have a business. and our customers expected a level of professionalism. It seems doctors and the medical profession in general have lost sight of the fact that we are, in fact, customers. Alot of the times we do not have alot of choice because of insurance, or availability of care, and they seem to know this and take advantage of that fact by allowing it to be'okay' to be careless.

I am sorry you have to deal with it, I wish they took more pride in their jobs. I have met some really good people in the medical field this past couple of years, the ones who ARE on the ball, try to make up for the others slack-that, I have seen time and time again. I really appreciate that.

But it doesn't change your frustrations does it?  have a hug   

[Romona]

I hope I don't sound too negative. I am one of those people that try not to be hard on people. I try to forgive. I make mistakes in my life daily. I am human and I know others are too. I love my transplant team. I am just disappointed. Thanks for the hug! I needed that!

[Ang]

 i  think  the  problem  is  that  a  certain  percentage  in  the  medical  profession  look  at  us  all  as  a  hospital  number  and  not  as  a  human,when  i  get  told  i'm  a  whinger  ,  my  standard  response  is"you  sit  in  this  $%%#$# chair  for 4.5  hrs,  try  and  get  a feel   4  what  its  like.

[Joe Paul]

Yep, been frustrated too. I think there are too many patients, not enough workers.

[Wattle]

when  i  get  told  i'm  a  whinger 

   Who called you a whinger? I wouldn't put up with that. Report it!!!

[glitter]

if anyone were to call my husband a whiner or anything else I would take it to the highest level of authority, and might possibly hire an attorney. Thats BS- you do not have to be insulted because your sick and dependant on life support.

[stauffenberg]

I once spent a week as a patient in a major, university affiliated, well-respected teaching hospital for a fairly simple problem, and during that period I documented 24 serious errors made in the treatment.  I complained to my nephrologist and he said that as bad as that hospital is, it is still much better than most!  You would think working in a hospital would make everyone more careful, since all the staff are aware of what can happen from their mistakes, but it seems to have the opposite effect.

In the 'famous' Hammersmith hospital in London the renal patients were given a treat every Sunday at dinner time, when there would be ice cream for dessert.  Some diabetic patients, knowing this was on the menu, would take extra insulin to handle the additional, high glycemic index calories.  But invariably the dinners would arrive with no ice cream, because the servery staff in the kitchen, as it was explained to us, "could not resist taking the ice cream for themselves."  Similarly, the technical nursing assistants used to prepare a limited amount of toast for the patients for breakfast in the morning, but since they would take some for themselves, the last ten patients to be served would only get untoasted bread.  The staff thought our frustration was funny.  The whole mindset of the Hammersmith and hospitals like it has to be changed.

[Meinuk]

What a great topic!  In my family, we call those moments a "sense of humour bypass".  I had one last week.  I had scheduled all of my Dr.'s appointments for Wednesday.  Surgeon early am, ob/gyn late am (same building), ultrasound afternoon then on to dialysis.  Of course - everyone was late.  I yelled at my surgeon, then I yelled at my ob/gyn, then I yelled at the ultrasound tech. In between appointments, I was on the phone to my office and bitching to them.  By the time I got to dialysis, I was all yelled out.  Being angry is more exhausting than anemia.

Moral of the story - only one Dr.'s appointment on any given day.  And know yourself well enough to know that sometimes you just lose it.  I was careful no to hurt anyone's feelings - but my point was well made.

And another thing - as far as personal relationships are concerned....  It wasn't until I was in my early 20's that I realised you can fight with someone and still love them.  - really, I always thought that when bitter words were spoken that they were permanent.  When actually, a fight is just a snapshot of that moment in you life.  You can either chose to carry it around with you or cast it aside and move on.  Most fights are about underlying circumstances anyway.

That's it, my moment of zen...

[kitkatz]

My moment of Zen always comes when I have lost my mind the most.  But then that is the perfect time.  I am constantly frustrated. There has to be a better way to live.

[Ang]

the  whinger  comment  was  not  directed  to  me  as  a  patient  it  was  because  my  wife  gets  me  to  take  in  AVON  BOOKS,a  nurse  ordered  ,  then  went  on  holidays,  i  was  out  of  pocket  $80,would'ny  you  be  trying  to  find  out  when  you'll  get  your  money,apparantly  thats  whinging

[paris]

The answer is YES.  Don't make this whole transplant thing sound so simple and then it drags on and on and for every step forward, you take two backward.  And then when you read a story about someone who went thru testing in a couple of months and immediately got a kidney---it makes you wonder what you are doing wrong.   Most days, I am logical about the whole process but for some reason this week, it just feels like it isn't going to happen and reality stinks.   But I guess frustration is just one more thing we all have to deal with

[Romona]

My coordinator finally faxed the orders directly to me. It shouldn't be this way!

[Romona]

I had the test that I mentioned. I called about the results. I was told the numbers were a little high. It may be that way because of the way it was shipped. The reason I drove to the affliated hospital was to prevent that. I think I just wasted a lot of time. I could have had a local lab do it and still get inaccurate results from shipping. I wanted accurate results. I just get so frustrated trying to be the compliant little patient!

[GuyIncognito]

Sometimes I think frustrated is my middle name, although since Transferring to Ottawa my level of care and satisfaction has gone up astronomically.

So heres the back story, I had a pre-emptive transplant that was lost to a bacterial infection... it was determined that improperly sterilized equipment used during the transplant was the cause of the infection. I was angry yes but seeing as my Family currently has 3 successful transplants on the go I figured I'd put it behind me and look ahead to a second attempt. Only it was not to be - the hospital took the stance that I was going to sue them and as a result took a defensive position against me, my nephrologist and the transplant surgeons were instructed to to keep a distance and offer no information, hence I found out that I had lost the kidney from a janitor hours after I awoke from the surgery and as the icing on the cake a vascular surgeon came into the room took one look at my chart and told me that they would be removing my right leg due to a anyerism in the artery... after I begged and pleaded for 30 min. with the help of my family they brought in another surgeon who determined that they would make every attempt to repair it with a stent... Not only was it fixable it is now  back to 100%

Feeling I was not getting the level of care I deserved I transfered across the province to Ottawa hospital and I have to say the care & courtesy I have received despite Hamilton refusing to send my files and hence having to repeat every test known to man is top drawer.

Thanks for letting me vent that... this is the only place I feel comfortable bringing it up.

[Romona]

I almost bled to death after a screw up. I wasn't able to get answers either. But I think your story takes the cake. I can not imagine what was going through your mind. It is pretty sad to find out what happened from the janitor. Best of luck to you!

[angellady07]

I have mixed emotions. While I'm very happy to be alive, I'm frustrated with inept doctors. We are only human and I think it's natural to become frustrated with our illness and everything that goes along with it. 

[Romona]

I have mixed emotions. While I'm very happy to be alive, I'm frustrated with inept doctors. We are only human and I think it's natural to become frustrated with our illness and everything that goes along with it. 

I should be happy as a clam. I'm 1 year post transplant. My emotions are such a roller coaster. I started on an anti-depressant and I know it takes time, but I was very cross with people today and burst into tears twice. I feel at times I've lost control. What are the anti-rejection drugs really doing to me?
I know they really mess up your body.