I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: boxman55 on January 29, 2009, 02:38:48 PM

Title: Don't ya think you need to know
Post by: boxman55 on January 29, 2009, 02:38:48 PM
Hi all, I went to an appointment I had with the transplant surgeon the other day. I have one every year to stay on the waiting list. Well he tells me that sometime before my last stress test I had a HEART ATTACH! My stress test was 3 months ago. Don't ya think I should have been told sooner. Now they want to do a CT scan of the abdomen to check blood flow then they want to do a cardiac cath to check blood flow to the heart. In the mean time I am still accruing time on the list but I am inactive. They had me inactive for all that time too. I mean come on.. You would think you need to know that too... I was both pissed and now I worry all the time. Geez  I am only 53...Boxman
Title: Re: Don't ya think you need to know
Post by: kimcanada on January 29, 2009, 02:45:38 PM
That sucks, I often wonder how the medical workers would feel about being treated the way that all (or most) treat dialysis patients...

As long as you are no "trouble" to them all is "well"... can you even imagine not telling a cancer patient what is happening with their treatment


GIVE ME A BREAK

 :cuddle; Boxman, I am so sorry about the shits that you have to deal with

(I had to add words and correct everything, I think I was angry when I wrote this )


Title: Re: Don't ya think you need to know
Post by: 2_DallasCowboys on January 29, 2009, 02:48:53 PM
Hi,

Sorry to see that you received this surprise news, especially
like this.  Of course you should have been informed - sometimes
the way the whole damn medical system handles itself is
so maddening!!
Did however performed the stress test let your primary care
dr know about this?
I would be asking an awful lot of questions

Anne
Title: Re: Don't ya think you need to know
Post by: willieandwinnie on January 29, 2009, 02:50:04 PM
:cuddle; boxman. That really sucks. Why in the world would they not call and tell you  :banghead; you should of been seen by someone as soon as they even thought you had a heart attack. Hope all the test go well for you. Len said that the cardiac cath was really cool to watch. I'm glad you are still accruing time during this. My thoughts and prayers are with you and I know you will let us know how things are going. You are special to us boxman.  :cuddle;
Title: Re: Don't ya think you need to know
Post by: breezysummerday on January 29, 2009, 03:08:21 PM
christ on a stick!!

You should have been told sooner, somewhere down the line.
From now on after every test, ask when can you can expect results.

I was wondering where you were at.  See, complete strangers worry about you
too.  take care....deborah


Title: Re: Don't ya think you need to know
Post by: MandaMe1986 on January 29, 2009, 03:23:58 PM
I can't believe they didn't tell you!   :banghead;  They should have told you the secound they found out, and should have been runnin test all this time!  And yes they should have told you that you were inactive, you have a right to know! Grrr I am mad for you.  Want me to go beat them up for  ya?  :boxing;
Title: Re: Don't ya think you need to know
Post by: boxman55 on January 29, 2009, 04:16:38 PM
I have been taking these anti depressant pills and they got me in a state of "whatever" I should be more pissed I want to be more pissed but, I have been in a state of "who cares" and I can't find the muster to scream and chock someone. I guess i will cut MandaMe loose on them...Boxman
Title: Re: Don't ya think you need to know
Post by: kellyt on January 29, 2009, 04:26:51 PM
That's total crap, Boxman.  They absolutely should have told you.  Three months ago?  Geeze, something else could have happened in that time frame.  At least they could have put you on a preventative medication, aspirin or something.  That is infuriating!

I'm sorry you're going through this.  Demand they schedule all your tests immediately and get back on "the list".
Title: Re: Don't ya think you need to know
Post by: MandaMe1986 on January 29, 2009, 05:36:02 PM
Anytime Boxman just let me know  :)
Title: Re: Don't ya think you need to know
Post by: G-Ma on January 29, 2009, 05:41:31 PM
What?????????? OMG...I think we are all screaming for you........your Dr. should have told you immediately.  This is absolutely unacceptable.
Title: Re: Don't ya think you need to know
Post by: Sluff on January 29, 2009, 06:07:02 PM
Totally ridiculous. I feel ya Boxman.
Title: Re: Don't ya think you need to know
Post by: Romona on January 29, 2009, 06:12:33 PM
 :grouphug; I think you should have been told.
Title: Re: Don't ya think you need to know
Post by: monrein on January 29, 2009, 06:45:05 PM
Hard to take Boxman...to be told so late and of course the news itself.   Please be sure to follow up on whatever you can do now, if there's any kind of problem at least it's better to know about it and be able to attend to it than just have it quietly explode.   :grouphug;
Title: Re: Don't ya think you need to know
Post by: okarol on January 29, 2009, 06:58:10 PM

Someone needs an ass-kicking! :Kit n Stik;
Title: Re: Don't ya think you need to know
Post by: kitkatz on January 29, 2009, 08:10:02 PM
I agree someone needs an ass kicking!  :Kit n Stik; :Kit n Stik;
Title: Re: Don't ya think you need to know
Post by: tamara on January 29, 2009, 08:21:05 PM
That definitely sucks !!!

Bring on the asskicking Boxman   :Kit n Stik;
Title: Re: Don't ya think you need to know
Post by: Mimi on January 29, 2009, 09:07:20 PM
Good grief, Box what a mess.  They put you on pills that make you feel 'whatever'.  Then you have a heart attack and they wait three months to tell you.  And when they do tell you the pills youake make you feel 'who cares'.  Wake up man, if you can't kick ass the rest of us can.
You must take better care of yourself.

Love, Mimi
Title: Re: Don't ya think you need to know
Post by: TynyWonder on January 30, 2009, 01:33:15 AM
Boxman,

2 questions................first of all, did you ask WHY they did not tell you before now?   Second of all, what are the "whatever" pills they have you on?   (I might need to ask for a script of those is why I ask)   I feel  :urcrazy; more than I would like too!   :rofl;
Title: Re: Don't ya think you need to know
Post by: Wattle on January 30, 2009, 02:39:02 AM
 :boxing; :boxing;  and   :Kit n Stik;   :Kit n Stik;


Phone through for results from now on. Don't trust them to have your best interest at heart.

GGGrrrrrrrrrr  I am really mad for you!!
Title: Re: Don't ya think you need to know
Post by: boxman55 on January 30, 2009, 06:00:39 AM
I am late get ready for D I will answer when I get home. Thanks for all your concern...Boxman
Title: Re: Don't ya think you need to know
Post by: paul.karen on January 30, 2009, 06:12:54 AM
Seems the only reason you even know this news NOW is cause you had an appt.  If you hadnt had this appt they may have never told you?

And can you have a heart attack and not even know it.
Maybe get a second opinion, and i only say this cause you are on the list.  It would be a double tragedy if they had a kidney for you and passed you by due to some FALSE information.  Just a different viewpoint.
Wishing you the best Boxman.
P&K
Title: Re: Don't ya think you need to know
Post by: Chris on January 30, 2009, 06:38:22 AM
I agree with okarol, someone needs a real long ass kicking at that transplant center. That is important information that needs to be known and shared and then not telling you that your on the inactive list, wtf! Sluff is close, can we send him to kick some ass while he drives his Harley up their ass?
Title: Re: Don't ya think you need to know
Post by: MandaMe1986 on January 30, 2009, 07:40:31 AM
Seems the only reason you even know this news NOW is cause you had an appt.  If you hadnt had this appt they may have never told you?

And can you have a heart attack and not even know it.
Maybe get a second opinion, and i only say this cause you are on the list.  It would be a double tragedy if they had a kidney for you and passed you by due to some FALSE information.  Just a different viewpoint.
Wishing you the best Boxman.
P&K

You can have a heart attack without knowing it. If it is mild enough it may seem like heart burn or a bad cold.  I had a causion who thought he had the flu and his wife made him go to the ER thinking he might have  something else treatable.  And found out he was having a series of minor heart  attacks. It was crazy. 
Title: Re: Don't ya think you need to know
Post by: boxman55 on January 30, 2009, 04:10:17 PM
I was told the same thing MandaMe. You can have one and not know it but then when is the next one coming. I put a call into the transplant clinical coordinator to discuss this further. I have my CT of the abdomen on Tuesday then they will schedule the cardiac cath. Is it just me shouldn't the cardiac cath be more important right now. Oh well they know what they are doing  ::)

Tyny, I take citalopram 20mg (depression) I have had them in my med cabinet since 9/08 but I just started taking them. I have been on them for about 6 weeks...Boxman
Title: Re: Don't ya think you need to know
Post by: MandaMe1986 on January 30, 2009, 05:14:46 PM
I need that antidepressent too :2thumbsup; might help me with my anger issues haha.

But hang in there hopefuly the doctors will get you all figured out and get you back on a transplant list.  Keep us updated
Title: Re: Don't ya think you need to know
Post by: paddbear0000 on February 03, 2009, 08:32:10 PM
Man, boxman, this just sucks! Reading about has made me so angry!! Has anyone given you an explanation as to why you were never told before now?
Title: Re: Don't ya think you need to know
Post by: pelagia on February 04, 2009, 03:50:50 AM
I'm coming in late on this, so first off  :cuddle;

They handled this in a completely unacceptable way.  Maybe you should write a letter to put this incident on record.  I find that writing letters helps to ensure accountability.  You could state the facts as you know them and express your surprise and dismay that the information was not relayed to you in a timely manner.  If they are not letting you know what has happened, how can you possibly manage your own health?  Since this is your transplant clinic, I'm not sure that blowing up at them is a good idea.  You still need to work with them towards a transplant. 

 :cuddle;
Title: Re: Don't ya think you need to know(update)
Post by: boxman55 on February 06, 2009, 06:12:15 AM
I have the cardiac cath on Tues the 10th of this month. I had to shake a lot of trees to get this scheduled because the transplant team would not write the order until they got the results of the abdominal CT. Which I thought was a bunch of crap but, they said that if the CT comes back negative then I am no longer their patient and I am on my own. All along they are agreeing that because I had a heart attack that I should have the cath but not by them and no order unless I pass. Well I passed on them and went ahead on my own...Boxman
Title: Re: Don't ya think you need to know
Post by: MandaMe1986 on February 06, 2009, 08:30:56 AM
You would no longer be their patient? That is a load of crap!!!!!  >:( >:( >:( >:( >:( >:( :rant;
Title: Re: Don't ya think you need to know
Post by: pelagia on February 06, 2009, 01:41:15 PM
 :grouphug;

Title: Re: Don't ya think you need to know
Post by: boxman55 on February 08, 2009, 07:38:19 AM
You would no longer be their patient? That is a load of crap!!!!!  >:( >:( >:( >:( >:( >:( :rant;
Yes that is true if the CT of the abdoman turns out negative then I would not be eligible for a transplant
so I would be let go...Boxman
Title: Re: Don't ya think you need to know
Post by: Rerun on February 08, 2009, 08:48:22 AM
See..... we are already in a "Socialized" Medicine Country and we don't even know it.  Get in line....... AND pay huge prices!

When you get the heart cath they probably won't tell you this, but you will need a ride home and 24 hour care by a friend or family member.  You cannot even bend over to pick up something off the floor because if the scab pops open someone needs to be there to put immediate pressure on the opening.

Also ask if you need to alter any BP medicines or blood thinners before the procedure. 

                                    :cuddle;

Title: Re: Don't ya think you need to know
Post by: breezysummerday on February 08, 2009, 11:19:58 AM
Boxman, I'm a little confused.  What is the CT of the abdomen for?
Is it to get a visual of the area they would be operating in,
to make sure they could transplant a kidney in the first place?
If that is so, then a 'negative' scan would show something wrong?


Sooo, if it's 'positive', your next step would be a cardiac catch,
for your peace of mind and one of the tests you have to pass
in order to get a transplant?

(hope i make sense)
Title: Re: Don't ya think you need to know
Post by: pelagia on February 08, 2009, 05:23:35 PM
I had the same thoughts.  I was thinking that negative means "bad result", but I am not sure about the purpose of the abdominal cath.  ???
Title: Re: Don't ya think you need to know
Post by: Chris on February 09, 2009, 04:57:45 PM
See..... we are already in a "Socialized" Medicine Country and we don't even know it.  Get in line....... AND pay huge prices!

When you get the heart cath they probably won't tell you this, but you will need a ride home and 24 hour care by a friend or family member.  You cannot even bend over to pick up something off the floor because if the scab pops open someone needs to be there to put immediate pressure on the opening.

Also ask if you need to alter any BP medicines or blood thinners before the procedure. 

                                    :cuddle;



Yep, Rerun is right about that one. Luckily they called the person who was to pick me up not to come since I was being admitted.

I forgot boxman, are you on insulin?
They will have special instructions for the test then, at least they did for me when they did mine. Unfortunately I got to stay overnight. After the procedure, I was so dehydrated, they finally gave me something to drink, but laying flat and drinking, it went down the wrong way. I started bleeding even with the nurse holding pressure on me. Also one of the levels they watch out for was still elevated. If the receptionist/ nurse has no idea about diabetes and what to do about meds, have her get someone who does.

Good Luck
Title: Re: Don't ya think you need to know
Post by: MandaMe1986 on February 12, 2009, 09:31:37 AM
Well Boxman I really hope your test turn out alright and clear you for a transplant again.  I am sorry all this is happing to you.
Title: Re: Don't ya think you need to know
Post by: boxman55 on February 16, 2009, 08:24:28 PM
The CT scan of the abdoman is to view the blood flow in the viens in that area to make sure they are significant enough to handle  attaching a kidney. With the Heart cath they want to see that your heart will be strong enough that you don't possibly have a heart attack while recieving your transplant. They dothe CT scan and stress test once a year to stay listed and a cardiac cath only if the stress test shows something might be wrong. Hope that answered your question Breezy...Boxman

I passed both tests and have been reactivated to the list as of this afternoon!
Title: Re: Don't ya think you need to know
Post by: st789 on February 16, 2009, 08:39:25 PM
Congratulation.

Preservation pays off. :2thumbsup;
Title: Re: Don't ya think you need to know
Post by: Chris on February 16, 2009, 11:31:58 PM
That's great boxman, to bad the center put you thru the ringer of headaches though.
Title: Re: Don't ya think you need to know
Post by: Joe Paul on February 17, 2009, 01:31:04 AM
Sorry I missed this thread, but I am glad all turned out good  :thumbup;
Title: Re: Don't ya think you need to know
Post by: kitkatz on February 17, 2009, 04:18:29 PM
See! Boxman knows how to apply the stick to a few medical heads when needed!   :Kit n Stik;

Good going!
Title: Re: Don't ya think you need to know
Post by: paddbear0000 on February 17, 2009, 10:17:33 PM
Yay boxman!!!   :yahoo; :yahoo; :bandance; :bandance;
Title: Re: Don't ya think you need to know
Post by: MandaMe1986 on February 18, 2009, 11:03:41 AM
Yey! I am happy for you, I am so gald you are back on the transplant list.   :cuddle;
Title: Re: Don't ya think you need to know
Post by: willieandwinnie on February 18, 2009, 11:28:50 AM
 :yahoo; boxman. So glad you were put back on the list. Keep us posted.  :cuddle;
Title: Re: Don't ya think you need to know
Post by: Sunny on February 18, 2009, 02:48:14 PM
Boxman,
I am so glad to hear you have been listed again for a transplant.I hope it happens soon.
Title: Re: Don't ya think you need to know
Post by: pelagia on February 18, 2009, 03:35:35 PM
Y  :cheer:
E :cheer:
S :cheer:
 :clap;
Title: Re: Don't ya think you need to know
Post by: boxman55 on February 18, 2009, 06:08:29 PM
Thanks all...Boxman
Title: Re: Don't ya think you need to know
Post by: okarol on February 19, 2009, 12:23:08 AM
 :2thumbsup; Yay! Good luck Box!
Title: Re: Don't ya think you need to know
Post by: TynyWonder on February 19, 2009, 04:42:28 PM
That is sooooo GREAT Boxman!!!!   I am doing the happy dance for ya!    ;) :bandance; :bandance; :bandance;
Title: Re: Don't ya think you need to know
Post by: jbeany on February 27, 2009, 04:24:42 PM
YaY!  Nice of them not to shut of the light at the end of the tunnel!
Title: Re: Don't ya think you need to know
Post by: G-Ma on February 27, 2009, 10:31:00 PM
 :cheer:
Title: Re: Don't ya think you need to know
Post by: Wattle on February 28, 2009, 12:18:48 AM
listen......

Is that the phone ringing??

If not I hope it is really soon!   :cuddle;     :cheer:
Title: Re: Don't ya think you need to know
Post by: paris on February 28, 2009, 10:07:43 AM
Great news.   :yahoo;