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

[ToddB0130]

Anyone else suffer from health related anxiety (I *know*,  that's probably a 'DOH' question) ?? ....  but here it is nearly 1AM and I'm having trouble getting to sleep (even though I'm pretty tired).  Being off of work this week (and not having that as a "distraction") has caused me to really be "in my own head" about my health.  And even though I feel alright overall right now,  for the past couple of days, I've had to psych myself OUT of going to the emergency room because I psych myself INTO thinking something is wrong (primarily with my heart ....  even though I've never had any heart problems and am not exhibiting any heart issues, shortness of breath, etc)

Of course,  it hits me at times when I couldn't go anywhere else but the emergency room (i.e.,  evenings, weekends, etc) --- tonight when it hit me around 11PM .... I went out and took a mile walk to try to distract myself (and convince myself "Hey,  you wouldn't be able to take a walk like this if you really weren't *okay*").

At the end of October,  my doctor prescribed me a small dose of Xanax (0.5 MG) that I could take up to 3 times a day as needed. 90 pills total and to date I've taken only 13 in two months.  I really don't want to take any more meds than I already do and the Xanax is of course habit forming,  so I really don't want to take them if I don't feel like I've really 'hit a wall'.

Soooooooooooo ........how do you deal with anxiety related to your health ??  THANKS

[MooseMom]

hahahahahahahahahahahahahahahahahahahahahahahahahahahaha (breathe) hahahahahahahahahahahahahahahahahahahahaha!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

OMG, here are the ways I've tried coping with my anxiety....

1.  Counsellor number 1.  He told me I should start going to his church.

2.  Hypnotherapist.  He was pretty good, but when I voiced frustration with CKD in general, his response was to chastise me and tell me that I should have more "faith".  He just suddenly got this attitude.

3.  Biofeedback lady.  Very expensive.  She had to quit because her mother became ill, and she needed to be her caregiver.

4.  Psychiatrist.  I made the mistake of taking my husband along with me, and they ended up in an argument.  She told me that any meds she might prescribe would probably make me gain weight, and she also told me that I should think of dialysis as a job.  Simplistic notion, that, and I didn't see her again.

5.  Naturalist.  I gave her a hair sample for her to send away for analysis, but I never heard from her again.  Just as well, as she suggested changes in my diet that made it very clear that she didn't know her potassium from her phosphorus.  Could have been dangerous.

6.  Counsellor number 2.  I quickly discovered that talking about my anxiety with someone who really couldn't relate just wasn't going to work for me.  Now, if this counsellor had had CKD, maybe we could have talked, but for me, I need to know that the counsellor understands the genesis of my anxiety.  That's just not going to happen.

7.  The one thing I have not tried is meds.  Now, I do have a few Xanax pills that I used to take during that week between having blood drawn and getting results at the neph appt, but I don't usually use them, and I don't take them on a regular basis.  I take so many pills as it is, and I worry about one more pill causing a cascade of side effects, which only adds to my anxiety.

I have been dealing with this truly primal fear and loathing for over seven years, so I'm a pro.  Here are the only things that help ME.

1.  Keeping my mind occupied.  I am not in paid employment, but I used to volunteer (and plan to do so again if I can get transplanted).  I am a voracious reader, and that is a real help to me.  I exercise regularly, and I enjoy my garden.  But I will readily admit that keeping busy is exhausting.  Sometimes I have trouble falling asleep because my mind goes into overdrive.

2.  Getting my fistula created.  The day of my surgery was the worst day of my entire life, and I made sure everyone knew it.  It symbolized the arrival of the inevitable, and I was inconsolable.  But now that it's created and mature, even though I have not used it yet, I know it is there, and I won't have to worry about the access issue once I have to start D.  I am surprised by how much anxiety that has removed.

3.  But the one thing that has really eased my panic more than anything else was attending the IHD meetup.  It was the first time I had met anyone else with kidney disease other than my mother who was almost 80 when she had to start dialysis because of surgery gone wrong.  She was not the kind of dialysis patient one aspires to be.  Seeing other people who were living with CKD/dialysis/transplantation presented me with concrete evidence that a good life with this disease is possible.  I really needed to see it to believe it.

I can tell you from personal experience that having too much time in which to dwell on your crap kidneys is the absolute quickest way to insanity.  Believe me, I know.

One last thing.  Living with such high anxiety for so long eventually becomes unsustainable.  I think in my case, I merely exhausted myself.  Constant panic is enervating.   I really wish I could be more sanguine about it all and appreciate the time I have without dialysis, but I am not wired that way, so changing my attitude is a constant battle.  And I do get weary.

[jadey]

Story of my life!

Ever since I got diagnosed with ESRD, I've been paranoid about every single little thing. For some reason, all the BAD things love to happen late nights on weekends for me too! For example, getting the call from a doctor on-call on a Friday evening that I should probably hit up emerg right away because my bloodwork shows super high creatinine.

I also have a tendency to google symptoms that increases my anxiety even more!! Eg. last month I noticed these warts near my anus (I know its TMI) and I automatically thought it was HPV/cervical cancer. Luckily there was a walk in clinic that opens late (to about 10pm) and I rushed there. Turns out it was a hemmorhoid. I was scared shitless though before the doctor took like half a second to diagnose me.

Oh before I found out I have ESRD, I actually googled my pre-dialysis symptoms and decided that I might have multiple schlerosis..

Ya it's ridiculous. Googling symptoms should be illegal.

[jbeany]

Personally, I have to walk myself through all the worst case scenarios.  I want - make that NEED - to know everything that could go wrong, so that when it doesn't, I can be pleasantly surprised.  I much prefer that to taken off-guard. 

So the sound track in my head, for a long time, went something like - My kidneys have failed and I might have a health problem that keeps me off the transplant list and then I'll have to stay on D for the rest of my life and then my life will be really short because eventually the side effects will catch up with me and then I'll get even sicker and then I'll end up unable to walk or talk and I'll be in a nursing home and I'll probably have a stoke or something and end up on a machine just like my mother did when her liver failed and then my sister will have to decide if....

Of course, if I follow that train of thought far enough, I end up dead.  And hey, at that point - nothing is a problem anymore. 

So I eventually learned to cut that off - usually by literally telling myself "STOP IT!" out loud. 
Good thing I live alone.

I find distractions are good things.  I always have a big stack of books to read, ingredients in the cupboard to make something fattening, a craft room full of projects to get involved in, and a cat to bother.  I also have an over-active imagination, which is best channeled behind any given day-dream or fantasy scenario with some healthy alter-ego who can do all the things I can't do (and couldn't even if I was perfectly healthy.)  Nothing like a bit of random lip-syncing to some bad pop songs, pretending you are on a concert stage to get in a better mood.
Again, it's a good thing I live alone.

[ToddB0130]

Thank you for the replies so far.  A) They've made me laugh (and that's always good medicine) and B) It's nice to know I'm not alone in dealing with this.

Of course, it's now nearly 3:30AM and here I still am .... up with my mind racing.  The hard part when your mind is racing *is* finding something to distract you.  I am also a huge reader,  but it's hard to concentrate, so .....

Moose Mom --- Wow !  What a list.  You are sooooo funny.   Some of those treatments, I hadn't even heard of !!  HA.  I do see a psychologist too and I tend to babble through a session pretty easily and he seems to always feel I'm doing really well coping with everything (WELL,  THAT MAKES ONE OF US !  Ha).

Jadey -- My sister was always self diagnosising herself too.  This was way before the internet.  We used to laugh about it.  You're right,  it's so easy to find 'information' and scare yourself.

jbeany --- that soundtrack in my head is exactly the thing I'd love to get rid of.  I wonder what prescription there is to get rid of THAT. Music is definitely a great distraction and I'm definitely one of those 'sing along' types that people think are crazy when they're driving along and see the other driver ....

Well,  I guess it's time to go back to bed,  lay down and NOT SLEEP ......... I guess it's enough to 'rest'.

[willowtreewren]

Todd, I am NOT the one with ESRD, but I am very familiar with the panic scenario running through my head in the middle of the night. I tried lots of things, except medication. I know from years of experience that meds and I don't mix well. For some reason my body reacts "unusually" to many meds, so I try to avoid that route unless truly desperate.

Here are the things that helped me:

1. I took a course in mindfulness. More than anything else, that helped me to be present in the moment. I also learned techniques for quieting the mind and relaxing.

2. I went to a sleep clinic and had a total work-up. Came to find out I had some pretty severe sleep apnea (average 50 incidents an hour!!!!). I now use a C-PAP machine. I also learned about good sleep "hygiene."

3. I bought a new Tempurpedic-type mattress (pricey, but we got it from Overstocks so we could still eat!). Oh, boy.....did THAT ever help.

I still sometimes wake up in the middle of the night sometimes, but I am now able to keep my mind from going into over-drive. Instead, I roll over, take a deep breath, put a smile on my face (this last one is important) and go back to sleep.

Best wishes on this.....

Aleta

[MooseMom]

Of course, it's now nearly 3:30AM and here I still am .... up with my mind racing.  The hard part when your mind is racing *is* finding something to distract you.  I am also a huge reader,  but it's hard to concentrate, so .....

Listen, one thing that I have discovered is that concentrating on a distraction is a SKILL that needs to be PRACTICED.  Arm yourself with different tools.  Books are great, but if you find your concentration waning, turn to something else.  I personally like DVD courses from The Teaching Company.  I've watched courses on music, history, linguistics, sociology and literature that have been so fascinating!  They are a bit pricey, but there seems to always be a sale on, and I've never paid anywhere near full price for any of them.

A friend of mine once had an interesting suggestion.  Go to a newsagent or good bookstore or pharmacy that has a large selection of magazines.  Buy a magazine on a topic you'd never have thought of reading...something entirely out of your "comfort zone."  For a while, I subscribed to a magazine about American Indian affairs.  There's all sorts of things out there what can capture and hold your attention, but again, remember that it's a skill to be practiced.

[Riki]

I hide, but I have social anxiety as well, so that could be why. *L*  I hide from everything and don't like to make waves, or bring any kind of attention to myself.  To me, that seems a little weird, because I do have a big mouth online.. *L*

Insomnia is a common thing among us kidney patients.  I had a doctor tell me that the reason behind this is a low melatonin level.  He suggested taking a melatonin pill about a half hour before going to bed.  It didn't really work, of course, because of that annoying tirade going on inside the head.  When the worries start coming through (and I have a lot of them, because of a lot of different insecurities, not just my health), I try to create a new narrative in my head.  Like Jbeany, it's usually about something I'd like to do if I was healthy and had my eyesight.  Sometimes it works, sometimes it doesn't.  Another thing I do is play my DS. I got a couple new games for Christmas, so I've been working on those.  I have 2 of the BrainAge games.  The second one has a game on it that's meant to relax you.  It does work, but I've gotten so good at it, that I can play for hours.  By the time the game is over, it's time to get up. *L*

Another thing you could try, that used to work for me, go to Pogo.com, and play any of the bingo games.  Bingo always put me to sleep.  I'm not sure why.  I have a feeling that paying attention for the numbers probably wears the brain down, so it's just as tired as your body.

[boswife]

wow,,,, this is better than my psyke board      You guys are great and i believe more help than i've had in a long time  but also       AND............ i gotta say that when my 'psyke' has commented to me that i seem to be doing well.......... i want to SHOUT and scream  ... but no, i smile, and slither out  ...  I will say that  I am so grateful that my sleep is generally quite deep, but on occasion, my crazy over active brain wont settle either and its awful... somewhere, somehow, we have to rest those thoughts and its sickning knowing that many of you all go through it as well .. Anyway,, this has been a touching thread and i appreaciate the smiles, and good thoughts it's given...   

[RichardMEL]

Some interesting responses here, and some humour (MM enjoyed your telling, as difficult as it is) - in some ways humour (with or without the u) is a vital ingredient. You know that old saying I think is applicable to us more than most - you could either cry or laugh... and I choose to laugh.

Todd - no wonder you're awake worrying about all this stuff - and even though you are physically tired your brain would find it hard to shut down. We all have bouts of that kind of thing where no matter how hard you try you just can't get stuff off your mind. To summerise what I'm trying to say: you're normal.

I was interested in the responses such as googling/self diagnosis and all that stuff. I never really did any of that and certainly tried to stop myself when I thought it might be a good idea. While being on a site like IHD is a great  resource for support and information, you simply can't second guess your own treatment team - they know  (or should know!!!) things about your condition that some random webdr can't possibly know, and let's face it some things on the internet can be darn scary to read!! Not that suffering from KD isn't scary in itself of course!

It's not that I deny that bad things can and do happen, or that I don't want to be informed - most people who know me would understand that is not me - but more that I'd rather not stress about stuff that MAY NOT happen to me. For example, I know there's roughtly a 40% chance of FSGS attacking my transplanted kidney. I try not to think about that - not that I don't think it will happen, but more that I can't do anything much about it, and don't feel it's useful to worry about things that I have no control over until it happens. Plus I know that stressing and worrying about stuff I can't control just raises my BP which is bad for my body anyway.

Yes, I do think it is important to know what one is facing, I try hard to not be anxious about stuff. About the most anxious I get is when I do labs and wait the result... I do get anxious sitting there in clinic waiting to be called and to hear the magic number.... yes, I worry because those numbers could suggest problems and every time it's stable I am very relieved.

I know this all reads as being very simplistic and perhaps it is. I'm trying to illustrate though that my persnal outlook is to try and be as positive as possible but understand that there are times where being anxious and worrying is normal, but I try and keep it within the bounds where it doesn't keep me up at night. I suppose the rational part of my brain is a bit stronger than other parts, and somehow I do sleep OK most nights and spend most days not worrying so much.

And that has nothing to do with having a transplant I can assure you. As I see it. the same applied when I was on D. There are complications and uncertainties at any and all stages of CKD - they are just different in nature, but since we're never free of this disease(at least under current medical science and baring miracles) it is a constant struggle to one degree or another.

What can I suggest to you Todd and others feeling similar stress? I certainly understand your reluctance to go to a pharmacutical treatment if you can help it - hell we take enough meds as it is!! However if you are constantly and badly affected by anxiety it may be a final sort of answer. MM's experiences show there are many and varied opinions, and I humbly submit that everyone is different anyway - one person's hypnotism may do nothing for the next and yet another may do well with meditation while someone else may need some kind of "chemical support" - I think we need to be open to exploring options that can help us.

Distractions can be a good thing, until the girl breaks your heart... oh oops... that's... umm... not applicable...  I suppose the way I distracted myself more than any was trying to focus my energy on doing the most I could to live my life normally and to keep my body running reasonably.

I don't know I guess life can be so unpredictable even moreso with CKD that trying to figure out what will happen could be more miss than hit. For example not in my wildest dreams did I think that a few months post tx would I suddenly lose mose of my left eyesight. It happened, and I've had to deal with it as best I can. The much bigger worry as for anyone with a transplant, specially a new one, is rejection.... but I tried not to think about that too much. Again not something I could do too much about and IF or when it happened/s well I'll have to deal with it - but even then it will be mostly up to the tx team how it's treated etc - but emotionally I will "cross that bridge when I come to it" - again, not denying the chances but more just trying to not let this stuf control my every move or dominate my life. I mean I have this tx, and I did D, to allow me to live a life... I'll be damned if it's going to dictate to me what I spend my time doing or thinking about. There are too many other things to occupy that important time and energy... and most of them have curves of one sort or another  

Everyone has uncertainties in life and things to be anxious about - be it health, family, finances, maybe a job, maybe school, or a relationship, or combinations. We each handle stress differently. It it continues to be a concern I suggest seeing a professional counsellor or psychologist for help - keep trying till you find one that works for you and you feel comfortable with, and seek help and advice.

That's exactly what you've done by posting here - this is  a great step - bravo!

[cariad]

Oh, Todd. Anxiety is horrifying. I don't tend to have difficulty falling asleep, but as happens periodically, this morning I woke up 4AM and just started obsessing about the various mistakes I've made with my life. Usually, once I get back to sleep, I wake up and either cannot remember what I was so upset about, or in the clear light of day I cannot think why it would be bothering me.

I don't suffer from anxiety about my own health. This is one arena where having children is a huge bonus - you can burn up all of your anxiety worrying about them.

My mother swears by Xanax, and this is a woman who detests the pharmaceutical industry - hates everything about it, is convinced they are all out to kill us and plunder our corpses for gold fillings. She says she falls quickly to sleep with it and wakes up totally refreshed exactly 8-hours later. I am more sensitive to drugs I suppose, because ativan (similar to Xanax) has me walking around in a stupor for days after taking the lowest possible dose.

I like Riki's suggestion to play video games. They actually have found that soldiers with PTSD find some measurable relief playing Tetris. I'm sure any other semi-mindless video game would help. Reading really helps me fall asleep, but I understand how difficult it can be to concentrate when you're worried.

On one occasion I can remember quite clearly thinking I was going to die, just after a talk with an a-hole doctor in Madison. I think my blood pressure was on the high side, and of course my husband was out of town. I was scared because my oldest was only 4 and the youngest was an infant (see, most of my fears center around the kids). I told my husband to call me in the morning, and that if I did not answer to call the police. I don't remember if he actually called me - he's pretty awful about keeping these promises - but I survived and was able to calm down and sleep after enlisting his help. We have an alarm system with a remote panic button, plus panic buttons on the actual console. Perhaps a service like this would be in order if this is really interfering with your life? I don't know, it's pricey, but if all else fails, I would consider it.

[hubbyhatesdialysis]

I have anxiety problems as well (I was diagnosed with Generalized Anxiety Disorder a couple years ago after having full blown panic attacks and then worrying about having another panic attack) and take Klonopin sometimes when I really have to. I kicked my GAD and panic attacks in the butt though a long time ago but just recently I have started having major anxiety attacks again. Anxiety is HORRIBLE.. believe me I know that. I know it is super hard especially when you are feeling anxious but your thoughts are what are making you anxious.. and you just have to be strong and try to think positive. Again, I know that is really hard especially when you are having major anxiety but I have to MAKE myself.. and also I have to make myself get up and do something so I won't just be dwelling on the negative thoughts.

I had anxiety problems before we knew about my hubbys health issues but I have found that his health issues make my anxiety so much WORSE. I am always worried about him and his health and I even watch him sleep sometimes to make sure he is breathing.. but I try to tell myself that I can't stop anything from happening if it is going to so no need to make myself miserable worrying about something I don't even know is going to happen.

I'm sorry if I didn't help much.. but seriously the most important thing I can tell you about dealing with anxiety is try to change your negative/worrisome thoughts because your thoughts directly relate to how we feel. I hate anxiety about as much as I hate my hubby having to go through all these kidney and dialysis issues so I really, really hope you find some peace Todd. 

[Poppylicious]

Oh before I found out I have ESRD, I actually googled my pre-dialysis symptoms and decided that I might have multiple schlerosis..

I have MS, ADD, CFS, Bi-Polar disorder and a mild form of autism. 

No, I don't.  Well, I might.  The Internet is a wonderful medical reference. 

 

I had anxiety problems before we knew about my hubbys health issues but I have found that his health issues make my anxiety so much WORSE. I am always worried about him and his health and I even watch him sleep sometimes to make sure he is breathing.. but I try to tell myself that I can't stop anything from happening if it is going to so no need to make myself miserable worrying about something I don't even know is going to happen.

I have suffered from anxiety since childhood (never to the extent of having panic attacks, but to the extent that it got to the point where I shut myself off from the entire world in my mid-twenties).  However, when Blokey was diagnosed it seemed to make my anxiety better.  I can't explain why, and obviously I do get very anxious still, but I think Blokey being ill put a lot of my anxiety related shenannigans into perspective or gave me something on which to focus rather than faffing around worrying about trivialities which didn't need worrying about. 

Todd, Riki's games idea is a good one.  When I go to bed I play games (Angry Birds and Bubble blast) on my phone and they send me to sleep. 

[RichardMEL]

Cariad, I don't mean to get too personal (I promised not to after I found out you were married!  ) but I was a bit surprised, honestly, by your comment about waking up and pondering the "mistakes" in life. From what I know of you I wouldn't have thought you to be the sort to look back so much as forward.... Of course you did say this is rarely.

For mine, I try to not think about such things - I suppose it is the general philosophy I have, as described above, that I try to not focus on things I have no control over - and this is a classic example. The past is the past and I can't change it. What's the point of going back and thinking "Gee, if only I'd...." - second guessing yourself, or thinking something was a "mistake" etc only leads to stress and worry you can't resolve because you can't change it (unless you're The Doctor and have a TARDIS ). I try to think of choices I make as the best I could do at the time given what I knew then and where I was at. Hindsight is a wonderful thing, but you can only ever do what seems the best at any one point. Gee, I could go back years and think "if only..." from the perspective of who I am now, but I wasn't that person back there - I've changed a lot over the years (as we all tend to). I can go back and think, for example, if only I'd had the courage to ask that cute girl out, or tell another how I felt when it mattered, or taken that opportunity when it presented itself..... but no, I am where I am because of my own choices, and circumstances, and heck maybe that's by design. Maybe I'd still have wound up here no matter what choices I made. Who knows?

I don't know that life should be considered a mix of "mistakes" and "successes" - more experiences - some positive and some negative in terms of outcome or impact.

Anyway I best step off my soap box on that digression. It just demanded that I put my three cents in (as usual).....

[cariad]

Cariad, I don't mean to get too personal (I promised not to after I found out you were married!  ) but I was a bit surprised, honestly, by your comment about waking up and pondering the "mistakes" in life. From what I know of you I wouldn't have thought you to be the sort to look back so much as forward.... Of course you did say this is rarely.

Aw, I take this as a huge compliment, Richard. I'm glad I don't come off as someone who dwells on the past.

It is pretty rare - usually I am so tired I don't wake until the alarm sounds, anyway. Last night I went to sleep deciding that Gwyn and I could have been much smarter about this sort-of move we're doing, so I guess I was just regretting that, and it turned into stupid things like 'why didn't I get that medical degree?' (Uh, maybe because you cannot stand hospitals?) and other semi-conscious nonsense.

What you wrote makes me feel a lot better, actually. I have been a bit blue with Gwyn gone again (though I see him on Friday, so that will be here before I know it) and second-guessing myself. I am a bit of a perfectionist, so it can take me time to forgive myself for the mistakes I've made. I do aspire to be the type that doesn't look back, but if it's going to happen, 4AM, when I am hardly rational, is the hour it will hit me....

I don't know exactly why, but reading this just really brought a smile to my face, so thanks.... 

In the real dark night of the soul it is always three o' clock in the morning. - F. Scott Fitzgerald

[Rain]

I have anxiety problems as well.   I'm near the call for a transplant time and every time the phone rings, I have panic attack until i check the call display.   The idea for surgery scares me, i don't know how my body will react to transplant.

When ever I get stressed about my disease I just keep mentioning to myself I will live a great productive life and accomplish X , whatever your goal is.

[jadey]

I have anxiety problems as well.   I'm near the call for a transplant time and every time the phone rings, I have panic attack until i check the call display.   The idea for surgery scares me, i don't know how my body will react to transplant.

When ever I get stressed about my disease I just keep mentioning to myself I will live a great productive life and accomplish X , whatever your goal is.

As much as I really want a transplant right now...the whole idea scares the SHIT out of me.

Just thinking about the huge surgery... the catheter up my urethra...the central line.. makes me want to cry. Then there's not being able to shower for a while. And also the chance of shitting/peeing myself because I can't get to the bathroom..

 

[Riki]

I have anxiety problems as well.   I'm near the call for a transplant time and every time the phone rings, I have panic attack until i check the call display.   The idea for surgery scares me, i don't know how my body will react to transplant.

When ever I get stressed about my disease I just keep mentioning to myself I will live a great productive life and accomplish X , whatever your goal is.

This may be a dumb question, and probably not the place to ask, but how do you know if you're near the call for a transplant?  I would think that there are too many variables to know where you're on the list until an actual kidney becomes available

[KarenInWA]

As much as I really want a transplant right now...the whole idea scares the SHIT out of me.

Just thinking about the huge surgery... the catheter up my urethra...the central line.. makes me want to cry. Then there's not being able to shower for a while. And also the chance of shitting/peeing myself because I can't get to the bathroom..

 

Jadey, speaking as someone who has recently been there, done that, it is not as bad as that! They put the catheter in while you're under general anasthesia, and the removal was a LOT easier than I thought it would be! I showered as early as the next day, and have showered every day since. One of the things they want to make sure you can do before you leave is shower. Sure, I had to have the nurse cover things before I could shower, but that is all temporary anyway.  As for your last worry, the pain meds make you constipated, so you won't be doing that for a few days, anyway! And as for peeing yourself, that's what the catheter prevents! Once it's removed (usually on the day of discharge) you are able to get out of bed on your own anyway. Also, when they remove it, they want you to pee on your own a couple of times before they let you go home. They even measure any pee leftover by doing a quick ultrasound on you (it's portable, they bring it to your room). They want to make sure that everything is working as it should. Yes, tx surgery is a HUGE deal, but it ended up going better than I ever thought it would.

KarenInWA

[jbeany]

As much as I really want a transplant right now...the whole idea scares the SHIT out of me.

Just thinking about the huge surgery... the catheter up my urethra...the central line.. makes me want to cry. Then there's not being able to shower for a while. And also the chance of shitting/peeing myself because I can't get to the bathroom..

 

jadey - I don't think I've heard a single woman out of all the female transplant recipients on here say the catheter was a big deal.  The men, however, do not agree!

It's okay to be scared about this - it's a big, scary thing to do - but the problems you mention pass quickly for the vast majority of transplant patients, if they even occur at all.  Personally, I had a zillion complications - and I'd still sign up to do it all over again.  Totally worth it!

[Riki]

I only had one "accident" and that was when I was 14, a few days after the transplant.  It wasn't because I couldn't get up to go, it was because I didn't know that I needed to go.  I had been on dialysis a year and 8 months, and had only slowed down a bit, not totally stopped like I have now.  I'm sure that the next time around, I'll need a diaper for a while, but I'll wear it with pride, and probably post a picture here, just so everyone can have a laugh.. *G*

[fearless]

Anemia can make you feel anxious, and also make it hard to sleep.  Make sure the anxiety is not a purely physical problem first (or maybe they all are in the end) 

Other than that, long hot baths (when was the last time I had one? ugh)

I really have to second the recommendations for learning to meditate, although it's hard to know when you're meditating.
There's something called a GSR (galvanic skin response) that can help you learn to move your brain waves from beta (wakefulness, including anxiety) to alpha-theta (relaxed state, meditation)
It's a type of biofeedback.
http://www.amazon.com/Basic-GSR2-Biofeedback-Relaxation-System/dp/B000E22DFE

I can't believe they're so expensive now.  I bought one years ago and it was half that price!  Once you learn how the different states feel, you don't need the GSR anymore and you can help your brain to relax more easily under your own control. 

I also like the method of thinking through the "worst case" scenarios.  unfortunately, when you're on dialysis, the worst case is indeed the worst case.  But as was also said, you can't really worry beyond that - so - !  (not trying to make light of it - i have struggled with anxiety for years - anything that's ever helped really involved some mental/emotional self-examination.  But I think I have learned the most valuable lessons of life in doing that kind of examination.  it's an ongoing thing)
best to you!

[jadey]

thanks jbeany and Karen. I feel a little less scared..but still scared! I think I'm just a big baby. I was terrified when I got my PD catheter insert and the horror still lingers in my memory. I think it's because I was awake for the procedure. When they say they put "freezing" on the site so I won't feel anything... it's a lie! I felt everything.

I'll worry about it when my time comes. I just hate needles.. and surgeries..anything sharp Although I've been slowly getting used to the needles due to ALL the blood they took from me while I was in hospital! I can now take bloodwork and vaccines LIKE A BOSS 

what I HAVEN'T gotten used to and still freakin hate is the eprex shot. It will always hurt like hell for me. It takes me like a minute to inject all the medicine because I push that syringe SO slowly to reduce the stinging pain

[Rain]

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.

[Rain]

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.
When my parents found out i had to do that, they thank god i was a girl, since it's easier to hide, due to the stalls and all that.  Since I started potty training I never could empty my bladder fully, and then after my bladder sugery I couldn't even pee a little.  Anyways TMI.

My fear is people with bladder augments and self cath have more complications post transplant. Anyone with bladder augments get transplant on forum?