Talking Yourself Off The Ledge .......

[RichardMEL]

The reason I say it's almost time is because most people get called at 4.5-5 years for a transplant.  I might have to wait longer due to antibodies but still. so I'm at that point.

Please don't take this observation the wrong way, but I think you're setting yourself up with a sense of anticipation that may or may not come off to pass. Let's say (I hope not!) you get to the 6 year mark and nothing - then do you start resenting it? Wondering where the hell it is? What is going on? And every time the phone rings now.... could this be the one?

I've been there myself. I have to say I too had those thoughts when I got to the 4 year mark, and I really had to, after a few months, try to remember that those numbers are all averages. For every person that gets a call at 5 years, someone gets it after 6 months, and another after 11 years (both have happened in oz while I was waiting..).

In my case it actually came when I least expected it (isn't that always the way??!). I thought it was a co-worker calling me right after a significant event happened in a cricket game.. but no, it was a kidney call!! 

Try to not rely on averages as a guide. Chances are it will be accurate more or less, and I definitely can understand the anticipation grows with each passing week that "it should be soon now" - that's normal, and as I say I had a bit of that... just try to not get too set that it *should* be in the next six months, or year or whatever.

Of course I hope it is!!!

[Riki]

The reason I say it's almost time is because most people get called at 4.5-5 years for a transplant.  I might have to wait longer due to antibodies but still. so I'm at that point.

Please don't take this observation the wrong way, but I think you're setting yourself up with a sense of anticipation that may or may not come off to pass. Let's say (I hope not!) you get to the 6 year mark and nothing - then do you start resenting it? Wondering where the hell it is? What is going on? And every time the phone rings now.... could this be the one?

I did that.  I figured 3, 4 years tops.  Then 4 years went by. Then 5, then 6, then 7.  It'll be 8 years in May.  I'm to a point now where I don't expect to ever get a call

[jadey]

jadey,

The catheter in the bladder is not bad, I have been self catheterizing myself for 13 years, 4-5 times a day and it's easy. For a guy it's a different story.

LOL.. thanks. it's great to hear that it's really no big deal. I just heard it was painful if you move around with it or something thats why

[ToddB0130]

Thanks for all the responses and advice.  I'm getting a bit more rest (though,  not tonight .......HA !!).

The information about transplant time averages is interesting.

Riki --- a  few questions,  if you don't mind ......... is the 8 year wait related to finding your best match ?  Have there been offers you've declined ?  Does your transplant center ever explain the additional delay in your case ?  And finally --- have you multi llisted ?   Appreciate any information.

[Riki]

Riki --- a  few questions,  if you don't mind ......... is the 8 year wait related to finding your best match ?  Have there been offers you've declined ?  Does your transplant center ever explain the additional delay in your case ?  And finally --- have you multi llisted ?   Appreciate any information.

My best guess is that the wait is due to antibodies, though I was told it was because my blood type was rare.  It's not rare, really, it's just harder to match.  I'm on O+.  I also think it might be because they seem to like taking me off and putting me back on the list willy nilly. 

I've been on dialysis since May 25, 2004, and I've never been offered.  If I was offered one, I don't think I'd decline at this stage.

I live in Canada, and as far as I can tell, there's no such thing as multilisting.  It's all done on a regional basis.  I live on Prince Edward Island.  The Atlantic Provinces have one transplant centre, and that's in Halifax, Nova Scotia, and that's where I'm listed.

[RichardMEL]

by the way the fear of the huge surgery, catheters, lines etc. You know, even though I went to a seminar on tx like years ago, and they talked about it, showed pics of someone in bed the day after the op with the lines and catheter etc in... for some reason that didn't really bother me so much. With the op I just thought well I'm under the GA and they will do all the "meat moving" and all that stuff and I'll wake up in pain with lines and stuff but I will have a KIDNEY hopefully one tha works (that was by far the biggest concern). Let's face it, with tx and after you have the happy good fun drugs for pain (which I didn't need much which is good since the morph machine broke 12 hours later LOL). Anyway all that stuff is taken care of pretty much, and with the lines and stuff.. that's part of it - you don't get a choice. As long as the kidney worked I could care less about that stuff.. if it hurts.. I can have the drugs(hopefully) and they can fix me up or make it less painful or heck I can deal....

I was always like that though I tried to not worry too much about stuff I wasn't going to see or whatever. So I woke up with the kidney inside, and a bit sore, and all the funky stuff.... I could give a crap about the op.. only that it worked!!

so far it's worked

[Riki]

jadey,

The catheter in the bladder is not bad, I have been self catheterizing myself for 13 years, 4-5 times a day and it's easy. For a guy it's a different story.

LOL.. thanks. it's great to hear that it's really no big deal. I just heard it was painful if you move around with it or something thats why

I found the catheter painful after my last transplant, but I don't think it's normal.  When they got me up to walk 2 days after the surgery, I felt like I had a tree trunk stuck between my legs.  I do have a theory on why it hurt me, however.

My kidneys failed when I was 12, and I think because of that, I never really had that growth spurt that most of us get at that age.  I grew a little bit, but I'm still the same height as I was when I was 14. Though I'm a bit wider across the behind, I'm thinking that since my outsides stopped growing at 14, then my insides probably did too, and the adult catheter that was used was probably too big.  I have decided that if I ever need to have another catheter put in, I'm going to demand that they use a pediatric catheter.  If nothing else, it will test my theory.

BTW. I've had catheters before that one I had after the last transplant, but they were all pediatric, as I was still in a pediatric hospital at the time.  They never hurt me at all, unless I was wide awake while it was being inserted.

[RichardMEL]

btw as a bloke the catheter removal was well... quick and painful ... but quick.... sort of like the stent removal (a bit less quick but about the same level of painful)... but that's part of life. The fact that it involves one's umm.. "Premium Member" is the, ahem, hardest part of it.....  I mean you pickture some big burly (male) nurse coming into your room and booming "Now it's time to get that thing off you..." having a big man er... doing that.... is well not too comfortable for a hetrosexual such as myself !!  but then again having one of the most attractive female nurses doing it would also cause it's own embarrasment... so... hey I got there in the end and that's the main thing!!!

 

(posted to give folks a giggle I hope!)

[jbeany]

I didn't find either the catheter or the stent painful or uncomfortable - not even when they removed it.

But one of my male friends who was stuck with a cath and collection bag for several weeks, even though they wanted him up and walking around the hospital every day, described as feeling like he had "an anchor attached to my ding-a-ling."   

[Gerald Lively]

After Prostate surgery I wore a pecker-catheter for several weeks, complete with a collection bag strapped to my leg.  This may sound horrible to some but I thought it was the greatest invention and benefit for mankind, ever.  I could drink beer by the gallon and never had to take a potty break. I could stay in the seats at Candlestick Park for the entire game.  Yep, I could stop anywhere on the side of the road and “drain my tank” and I wouldn’t get arrested for hanging my “noodle” out in public.

Hells bells, I offered the nurse twenty bucks to put it back on.  She turned me down, ethics and all, she said.  One of life’s disappointments.

On the down side; while in the hospital for that same prostate surgery, an old fellow on a gurney went by door. His family and some nurses were crowded around the gurney as they came down the corridor hallway to the corner there and passed my door after turning.  His catheter tube slipped out when the traversed that hallway corner and the male nurse stepped on it. The guy on the gurney made a loud gurgling noise. Two steps later they figured out what the problem was and, no, he wasn’t built like King-kong.  Maybe he is now. They safely tucked away his tubing and moved on.

I never heard if he survived the stretching episode. Lesson: maintain control of your tubing at all times.

gl

true

[Riki]

Ohh... ouch, Gerald...

When my dad had prostate surgery last year, he had a catheter in too.  I went to see him in the hospital, and he had 2 big flush bags hanging.  He looked at me and he said, "I think I'm starting to see how you felt when you were on PD.  They just keep filling and draining." *L*

He also said that he felt like he had a weight tied to the end of his thingie.

[jadey]

I didn't find either the catheter or the stent painful or uncomfortable - not even when they removed it.

But one of my male friends who was stuck with a cath and collection bag for several weeks, even though they wanted him up and walking around the hospital every day, described as feeling like he had "an anchor attached to my ding-a-ling."   

The "stent" is the piece where they have to reach into your bladder right? oh god that sounds really scary...how do they get in there???

[KarenInWA]

I didn't find either the catheter or the stent painful or uncomfortable - not even when they removed it.

But one of my male friends who was stuck with a cath and collection bag for several weeks, even though they wanted him up and walking around the hospital every day, described as feeling like he had "an anchor attached to my ding-a-ling."   

The "stent" is the piece where they have to reach into your bladder right? oh god that sounds really scary...how do they get in there???

Okay jadey, I'm going to be blunt honest with you.  I just had this done on the 29th. It ain't fun, but it is quick, and once it's over, it's over (whew!). I had to go to a room, take off my pants and underwear, put on a gown, and then the nurse came in for the prep. Yes, this involves stirrups!  The prep work included the nurse putting betadine on me "down there", and then the *real* fun part, injecting lidocaine up (yes, I said "up") my urethra    !! Then, my surgeon came in (the same guy who did my kidney tx), and with the nurse, they both worked a scope-like instrument up my urethra, through the bladder, to remove the stent.  Now, I am here to tell you that as long as you don't panic - *it is not all that bad*.  It takes about a minute, and that is indeed the big relief!  I highly recommend packing a pantyliner or small pad, because you may need it for any light bleeding that may occur (it did for me, anyway).  It may burn when you pee for the first few times, but after that, you're back to normal.

Just tell yourself when going in (this will all be done and over soon, this will all be done and over soon...) and before you know it, it will! 

KarenInWA

[Riki]

I didn't find either the catheter or the stent painful or uncomfortable - not even when they removed it.

But one of my male friends who was stuck with a cath and collection bag for several weeks, even though they wanted him up and walking around the hospital every day, described as feeling like he had "an anchor attached to my ding-a-ling."   

The "stent" is the piece where they have to reach into your bladder right? oh god that sounds really scary...how do they get in there???

Okay jadey, I'm going to be blunt honest with you.  I just had this done on the 29th. It ain't fun, but it is quick, and once it's over, it's over (whew!). I had to go to a room, take off my pants and underwear, put on a gown, and then the nurse came in for the prep. Yes, this involves stirrups!  The prep work included the nurse putting betadine on me "down there", and then the *real* fun part, injecting lidocaine up (yes, I said "up") my urethra    !! Then, my surgeon came in (the same guy who did my kidney tx), and with the nurse, they both worked a scope-like instrument up my urethra, through the bladder, to remove the stent.  Now, I am here to tell you that as long as you don't panic - *it is not all that bad*.  It takes about a minute, and that is indeed the big relief!  I highly recommend packing a pantyliner or small pad, because you may need it for any light bleeding that may occur (it did for me, anyway).  It may burn when you pee for the first few times, but after that, you're back to normal.

Just tell yourself when going in (this will all be done and over soon, this will all be done and over soon...) and before you know it, it will! 

KarenInWA

I have very little memory of that, and I'm kind of glad of it.  I do remember that it was quick, but I think I was also given a sedative.  I could be wrong, though.. it was 10 years ago.

[ToddB0130]

ACK --- So, one of my things to accomplish today was to go to see a movie.  And I made it there and as I was sitting there watching (WAY TOO MANY !!) previews,  I started getting that sense of 'not feeling quite right' (which I started to describe in my very first post on this thread).  And sitting there,  I got more and more anxious .......... and when the SEVENTH preview (no lie !!) started,  I got up an left.  I just couldn't sit there any more.  UGH !  Once I got up and left the theater,  I actually walked around the mall a little bit (hit the music store FYI .... hard to believe music stores even still exist in 2012 !) and then headed back out.

Got in my car and headed to the shopping center where I proceeded to do some grocery shopping and went to the local Walmart for some other supplies.  All told I stayed out doing things for about another hour before heading home.  I've been home a couple hours now,  having talked to a friend for a good long while and caught up here on IHD. (and yes,  I *did* pop a Xanax when I got home !).   So,  I am clueless about why the sense of dread overcame me at the movie and my general feeling of not feeling well (it wasn't nausea or anything like that .... as I've described it before,  I just get in my head and then feel like there's something wrong with my breathing, etc).   Sooooooo ............. I missed the movie (and here it is more than four hours later and I'm doing okay ............. at least I didn't run off to the emergency room like I tend to want to do some nights and weekends.

Hey --- I need to find myself a live in doctor who can give me an examination any time I'm about to head out of the house.  They can say "Your lungs sound clear,  your heartrate is fine,  all vitals appear normal .... go out and have some fun !!  Be back by 11PM to get a good night's rest."   HA.

[Jean]

Anxiety attacks started for me about a year before I had my ( one and only so far ) heart attack. I had no clue as to what they were, and in fact delayed going to the hospital the night I finally did have a heart attack, because I thought it was anxiety. After the attack when I went for a check up, my Dr. asked me if I was depressed and I said, I dont think so, but I cry over anything, and sure enough I am now on two anti-depressants. I am not one to fight taking a pill if I think it will benefit me. I figure at my age I probably am addicted to some thing, with all the meds I take and I simply dont care if I am addicted.No one gets out of life alive and my philosophy is that I just dont want to hurt if I dont have to. Take the Zanax when you think you might need it. That is my    worth.