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Adam_W
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Me with Baron von Fresenius

« on: January 11, 2012, 03:49:43 PM »

I've been on dialysis for five years, and most of that time I've had very little depression. For the last month however, I've been overwhelmed with dealing with all this. I have actually had a few thoughts of just stopping dialysis. Quite simply, I'm tired. I'm tired of being sick, I'm tired of being "different", I'm tired of spending so much time hooked to a machine. I feel like I don't have that much time left anyway. I'm a Christian and I know where I'm going, so I don't worry about my own death, but I do worry about those that I'll leave behind. It's going to be very hard for them because I'm still young. I'm not actually stopping dialysis, but this is the first time doing that has crossed my mind. I just need prayer to get through this.
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-Diagnosed with ESRD (born with one kidney, hypertension killed it) Jan 21st, 2007
-Started dialysis four days later in hospital (Baxter 1550-I think, then Gambro Phoenix)
-Started in-centre dialysis Feb 6th 2007 (Fres. 2008H)
-Started home hemo June 5th 2007 (NxStage/Pureflow)
-PD catheter placed June 6th 2008 (Bye bye NxStage, at least for now)
-Started CAPD July 4th, 2008
-PD catheter removed Dec 2, 2008-PD just wouldn't work, so I'm back on NxStage
-Kidney function improved enough to go off dialysis, Feb. 2011!!!!!
-Back on dialysis (still NxStage) July 2011 :(
-In-centre self-care dialysis March 2012 (Fresenius 2008K)
-Not on transplant list yet.


"Don't live for dialysis, use dialysis to LIVE"
Ladystardust24
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Keep Calm, Carry on.

« Reply #1 on: January 11, 2012, 04:00:39 PM »

I am so sorry you feel so down.

I've been doing this whole thing for my entire 22 years. I think t times, I cannot think of how much it gets to me. Because if I think about it too much, I get more depressed and not sure what to do with myself.

That still doesn't mean it doesn't cross my mind.

It DOES get overwhelming. And, I'm sorry you feel so depressed. I will say, you are normal. If you did not get depressed ever about all of it, you'd be the first one, EVAR.

It's hard for anyone, of any age. But for those who are younger, there's times I FEEL so much older than I am. That my body is so damn worn out. And how many things are wrong with it. It gets me down.

That, as proud of my scars as I am. There's times I wish that my battles were not maybe so visiable. My brace helps me walk, it gets the job done. But, I feel like it's this weight. Is it wrong to admit, sometimes, I wish I could wear pretty uncomfortable heels, to be pretty? Is it wrong I wish not to have so many scars to have to explain to people? I do.

I admit that, I accept it.

There's times to allow your to grieve for a life never had, for one lost. To be angry for it all. To be sad. And, then accept. It's hard. But, keeping down won't help either.

I will say, my family and I had discussed this topic. If something were to happen. I'm not sure if I could do it. That's the truth. But, it's also a thought I cannot bear to think about. Because, it hurts a bit too much. Because of the uncertainty in all of it.

But, when it has been brought up, like "what if something happened during a procedure ect." I let my family know my wishes. My father who is my rock, and the one to make any decisions, has accepted them. It's generally something we do once/twice a year when I need to update my DNR and such.

But, you're not alone in how you feel. Even if you feel it in daily life. My best wishes and thoughts. <3
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MooseMom
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« Reply #2 on: January 11, 2012, 04:04:38 PM »

I'm sure I'm just being naive, but I don't think it is possible to endure 5 years of dialysis without these sorts of thoughts crossing your mind.

I have absolutely nothing to say that could make you feel better because at the end of the day, you will still be sick, and you will still have to go to dialysis.  I have no sunshine nor lollipops to hand out.  However, I think that in the near future, there is going to be a wave of new technology that will revolutionize dialysis.  There are new machines and new biotechnologies on the horizon, and this is the one and only things that gives me real hope of a better future for dialysis patients.  Damn the lollipops!  Give me new sorbent technology!  Give me a portable, wearable artifical kidney.

Hang on.  Just hang on a bit longer.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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« Reply #3 on: January 11, 2012, 04:15:28 PM »

Adam W.;

I am the Chief depressed person here.  I don’t know if you are competing for the title, if you are we should settle this over a checker board while both are attached to our dialysis machine.  My dialysis machine is bigger than yours, be forewarned.

You do outrank me for “time on machine”.

You shoulda’ seen me back in July when they carted me into the hospital.  I was hallucinating.  I thought the female nurses were hookers when they kept asking me for my vitals.  Really!  No bull.  Then there was this time when (partly true) when a group of nurses tried to get me to change doctors in favor of a female doctor.  This went on for hours and hours and I finally walked out of the hospital at midnight, not wanting to take it anymore.  Then the hospital called the Sheriff who came to my home and 1 AM to try and hustle me back into the place where I thought chickens roosted.  No kidding.  Two hours later, about 3 AM, I went back.  The hospital was really pissed that I did not fill out the paperwork.  Hells Bells, I couldn’t even write my name. 

This is to say nothing of them dragging me into the basement and pounding a stake into my heart while I fought off the doctor. I still have that stake (catheter). 

And that is only part of the story. 

You can find my posts all over this forum where I moan and groan, and act like, . . .  well . . .  I don’t know what?  Finally, on lady here told me to write something that didn’t have to do with dialysis or myself.  I think she was telling me to knock it off.  Enough, you know.  So, I found more clever ways to say, “whoa is me”.

I too am depressed.  My humor is a façade.  I was a very active person, (Harley’s, weight training, booze, broads) but no more.  I haven’t found a substitute yet.  Lets you and me form a club until we find something sinful to do.  Let’s go out and have a six dollar hamburger, you get the fries.

gl

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Hodgkin's Lymphoma - 1993
Prostate Cancer - 1994
Gall Bladder - 1995
Prostate Cancer return - 2000
Radiated Prostate 
Cataract Surgery 2010
Hodgkin's Lymphoma return - 2011 - Chemo
Renal Failure - 2011
Renal Function returned after eight months of dialysis - 2012
Hodgkin's Lymphoma returned 2012 - Lifetime Chemo


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fearless
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« Reply #4 on: January 11, 2012, 05:14:41 PM »

Adam W

These are the times you hang on blindly because there is no easing of the pain, except through time.  Don't look at the future.  The future isn't real.  Find somebody (anybody) to do something useless and distracting with.  During my eight years of dialysis, I have gone down low a number of times.  Dialysis isn't something you just "adjust" to, and then you're fine.  It's a LIFE you have to adjust to, and every time you think you're on an even keel, some new problem hits you.  But as time goes by, the low spots become familiar and it's gets easier to suspend your desperation until the depression lifts.

My heart is with you and I am very happy to pray for you.
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« Reply #5 on: January 11, 2012, 05:26:16 PM »

Adam,

I'm sorry....   :grouphug;

Depression hits hard sometimes...  Hang in there. Are you listed? Or is there some issue that precludes transplant?

I wish there were something we could do....

Aleta
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Adam_W
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« Reply #6 on: January 11, 2012, 06:36:08 PM »

Thanks for the comments. Usually, I've been fine with all this. One thing that really helps me is humour. I've made so many corny jokes about dialysis over the years! I think what has had me so down lately is that this last summer has been particularly rough. I've been in and out of the hospital, my blood pressure is getting almost impossible to control, and I've discovered I have chronic bronchitis. I've just gotten tired of my body breaking. I have been looking forward to the new dialysis technology and if I'm still around when they start clinical trials for these machines, I'll volunteer to try them. I'm working on getting listed at two transplant centres (one in Indiana and one in Kentucky), but I've had three blood transfusions so it's going to be hard to find a close match. Something else that may be increasing my depression is living by myself. I've always been kind of a "loner" but sometimes I do get lonely. I am trying to talk my apartment owners into letting me have a cat which will actually help a lot. Nothing perks up my mood more than a warm purring cat curled up in my lap  :). I'm also going to be talking to my doctor to see if there are any options of helping me cope with this.
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-Diagnosed with ESRD (born with one kidney, hypertension killed it) Jan 21st, 2007
-Started dialysis four days later in hospital (Baxter 1550-I think, then Gambro Phoenix)
-Started in-centre dialysis Feb 6th 2007 (Fres. 2008H)
-Started home hemo June 5th 2007 (NxStage/Pureflow)
-PD catheter placed June 6th 2008 (Bye bye NxStage, at least for now)
-Started CAPD July 4th, 2008
-PD catheter removed Dec 2, 2008-PD just wouldn't work, so I'm back on NxStage
-Kidney function improved enough to go off dialysis, Feb. 2011!!!!!
-Back on dialysis (still NxStage) July 2011 :(
-In-centre self-care dialysis March 2012 (Fresenius 2008K)
-Not on transplant list yet.


"Don't live for dialysis, use dialysis to LIVE"
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« Reply #7 on: January 11, 2012, 06:56:00 PM »

Sounds like you have a lot of insight into how you might help yourself.  I have a cat, and he makes a huge difference in my disposition.  If you have the energy for a kitten, he will keep you laughing (but be forewarned: getting through kittenhood can destroy your apartment)  I adopted an adult cat, and he suits me just fine.  And i do still get a laugh from his antics (or just his expression sometimes)
I'm lucky that I have my sister nearby.  I tend to be a loner too, but when I get really depressed i just dog her every move.  i don't need to talk about anything, i just don't want to be alone with my feelings and thoughts.  I go to the store with her, watch TV with her, go wherever she needs to go.
I've used anti-depressants too.  I'll use anything that helps (not worried about destroying any vital organs anymore - ha ha)
You know any one of us here is willing to talk too.
Sounds like you've had a long stretch of bad luck.  Follow your instincts.  They sound pretty smart.

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« Reply #8 on: January 11, 2012, 08:18:31 PM »

AdamW --- I really am rooting for you to push through this.  You've been strong and able to rally through this for 4 years.  I am sad that young folks like yourself have to deal with this.  I do have a question though regarding one of your posts.    Your blood pressure remains out of whack .... even on the dialysis ??  I *thought* that dialysis usually helps improve blood pressure control (and many people are able to reduce their blood pressure meds).  Sorry,  I am still pre-dialysis and maybe I have that wrong.  Thanks for any information !!  Best of luck to you.  You CAN keep going.  This depression will pass (and I hope you get your kitty soon).
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« Reply #9 on: January 11, 2012, 09:37:36 PM »

Finally, on lady here told me to write something that didn’t have to do with dialysis or myself.  I think she was telling me to knock it off.

That lady was me, and no, I wasn't telling you to "knock it off".  Quite the contrary.  I was suggesting that you take the topic of dialysis and look at it from a different perspective, like, say, that of your wife.

Something like dialysis can completely overtake your life.  I'm not even on dialysis yet, but this whole CKD thing has pretty much taken over mine, so I couldn't possibly in all good conscience tell you to "knock it off" or "get over it" or in any other way demand that you ignore your plight.  That would be hypocritical of me, wouldn't it?  BUT, I thought it might be helpful to you to write about dialysis in a different way.  Maybe pretend that you are a dialysis machine and write about the various people who depend upon you to live.  That might sound corny, but you get the idea.  You are a talented writer, so I'm sure you can think of something.  (BTW, I'd love for you to write something about how your wife is coping with your dialysis.)

I think you may find that I have been Chief Navel Gazer on IHD for quite some time now.  On many occasions, I've had to force myself to just think about something other than my kidneys.  You are a rather new member and perhaps don't know the extent of my illustrious career. :P  Should you care to compete for the title, be forewarned; I'll blow you out of the water, sir.

Adam, the important thing is that you are not letting your depression make you inert.  You have some things in mind that may help you, and that is an enormous first step .  I hope your doctor has some good advice.  I've always felt that any doctor who treats patients with chronic illnesses should have a list of therapists to whom he can refer a patient.  Doctors really don't bother treating a patient's broken heart.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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« Reply #10 on: January 11, 2012, 09:38:02 PM »

Hi Adam

 :cuddle;

I've only started dialysis recently and already had these thoughts go through my mind. It's really hard and what really kept me going were the people around me, the ones who care and the ones I am living for. Then I thought about my job, my future goals, and my family. There are a million things to live for and I won't let a machine get in my way.

All I can tell you is you can do it! I think getting through 5 years of dialysis and only getting those kind of thoughts now is freakin impressive and I admire you. You can get through this!  :grouphug;

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Nov 5, 2011 - diagnosed with ESRD, unknown cause
Nov 14, 2011 - PD catheter insert
Nov 15, 2011 - Started PD
Oct 11, 2012 - received a kidney from my mom, 3/6 match
-kidney wasn't filtering properly. 2nd surgery 4 days later to re-position kidney. Accident happened and kidney got damaged. Internally bleed 1.5 L and needed a transfusion. 3rd surgery to sew up the damaged kidney.
-anaphylactic shock to thymoglobulin
-ATN and rejection
-sleepy kidney waiting to recover

a start of a new life, a new journey
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« Reply #11 on: January 11, 2012, 09:41:18 PM »

ps. I also hope you can get a cat! I love pets!!! They make you feel so much better especially when you are upset!
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Nov 5, 2011 - diagnosed with ESRD, unknown cause
Nov 14, 2011 - PD catheter insert
Nov 15, 2011 - Started PD
Oct 11, 2012 - received a kidney from my mom, 3/6 match
-kidney wasn't filtering properly. 2nd surgery 4 days later to re-position kidney. Accident happened and kidney got damaged. Internally bleed 1.5 L and needed a transfusion. 3rd surgery to sew up the damaged kidney.
-anaphylactic shock to thymoglobulin
-ATN and rejection
-sleepy kidney waiting to recover

a start of a new life, a new journey
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« Reply #12 on: January 11, 2012, 09:48:47 PM »

Oh, Adam. Depression. It's so damn hideous.

You've overcome it before and you'll do it again. I know only too well that recognising that intellectually does precious little when you cannot feel it.

Try to be especially nice to yourself until you get through this.  :grouphug;
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« Reply #13 on: January 12, 2012, 04:09:30 AM »

Fearless,  I think the idea of getting a pet is a good one.  You might also try walking 1/2 hour 4 times a week.  Or putting Pandora on the computer and singing along with the songs (they have the words on there for you).  Dachshunds make very good pets, but be sure to get an older female from a Dachshund rescue person.  The young male dogs need a lot of attention, and they often bite.  The old cliche that a dog is a man's best friend is true.  If you're single you might consider hooking up with someone.  Life is strange sometimes.  The day before yesterday was a perfect day for me.  The weather was 74 degrees, clear, and sunny.   My son came down from San Francisco, and we partied.  My stock went up 13% on great news.  I brainstormed a good sequence for my screenplay. Then yesterday I got a letter saying I have a complex cyst.   One of my dialysis buddies wasn't there, and he looked really bad during the previous two dialysis sessions.   Life is bittersweet.  As a Christian you can rejoice in God's eternal love.   :flower;
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« Reply #14 on: January 12, 2012, 04:37:39 AM »

Adam what can I say to make you smile, you are doing well going through all this shit, it is not easy we all get depressed and I think Jan and Feb are really depressing months. What sort of cat are you thinking of getting? I do believe this will help a lot.Go see your doctor and see if there is any help out there for you. I will be praying for you. Do not lose hope after all this time.
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« Reply #15 on: January 12, 2012, 07:44:13 AM »

Oooh, a pussy-cat!  I LOVE pussy-cats.  My cats are gorgeously scrummy and very very funny, when they're not being annoyingly mischievous.  I hope you are allowed to get a cat, and that you then come on here and post oodles of pictures ...

 ;D

(Sorry that you're suddenly feeling overwhelmed; it's awful when that happens.)
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- wife of kidney recepient (10/2011) -
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« Reply #16 on: January 12, 2012, 06:38:52 PM »

I know the feeling.  About 6 years ago, I felt like my entire world was work (I was working part time) and dialysis.  It seemed like any dreams I had were gone.  I didn't think I'd ever be able to make the money to buy a house, I didn't think I'd ever be healthy enough to have kids, and that didn't matter cuz I didn't have a partner to have kids with anyhow.  I really felt that there was nothing left for me to look forward to.  I was (and still am) an insomniac, so I spent most nights playing on my computer and having the tv on in the background.  One night, while I wasn't particularly paying attention to the tv, a snippet of a joke tickled my ear.  When I turned to look at the tv, it was Stephen Colbert that was on.  Watching his show sparked an interest in politics and political satire.  Also, knowing that the show was on 4 nights a week, gave me something to look forward to.  My interest in the show brought me to message boards and chat rooms related to the show, and that's where I met my best friend.  Once I met her, things seemed to get better and better.  I can't say that everything is puppy dogs and rainbows, I still go through periods where the world feels like a dark cold place that has no use for the cyborg that is me.

I live with my mom, mostly because of my eyesight, so I'm not on my own, but having a four-legged, purring, fuzzy friend to snuggle up with when I get home from dialysis does help lift the spirits.  Cats are also known to help lower blood pressure, so hopefully your landlord wil be ok with you having one
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
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« Reply #17 on: January 12, 2012, 06:51:27 PM »

  :pray;  and   :grouphug; to you Adam!  It isn't easy for any of you going through this stuff!

Thinking of you,
lmunchkin
 :kickstart;
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12/2004 to 6/2009 Home PD
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« Reply #18 on: January 12, 2012, 09:20:34 PM »

After I slept until 5 pm this afternoon, again, my brother called to tell me he had read about a recent article in the Wall Street Journal that mention depression in dialysis patients. Oh great, I thought, more depression. Just what I mean.

Not that having a transplant wasn't a great thing. But it opens up a whole new bag or worms. Or cats.

I tried to move a number of years ago, due to post transplant depression. I thought New Mexico would be lovely. So I bought land there. On ebay. :)

Uopn doing a little ore research, I discovered they had no transplant facility (at that time).

You always need to be near a hospital that has a transplant program. I've been flown, twice, from small regional hospitals, to large facilities that had them in Madison and Chicago. And not for transplant related troubles, it's just that hospitals that don't have transplant programs don't know what to do with you. Same goes for "primary care doctors".

And yes, I have cats. Three of them. Between the cats and the folks at the dialysis center, I'd go months without seeing any one.

Depressing.

I sure hope the Grim Reaper IS Adam Carolla.
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First bout on dialysis: June, 1990
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« Reply #19 on: January 12, 2012, 10:15:30 PM »

Depression is common among kidney patients, just take a look around this site. *L*

I think the problem lies in how you deal with it.  There is a good way, and a bad way.  When I get bad, I feel like there's no point in continuing, cuz there's nothing left to look forward to in life, and that nobody cares.  I've driven people away when in that state.  I'm lucky enough that I have a friend that I talk to almost daily, who can tell that I'm starting to fall into that hole, and she's always able to find something for me to look forward to.

When I started dialysis the second time, I lived alone.  I was doing manual PD exchanges that were taking all the energy out of me, and I was working full time.  I felt like the whole world had abandoned me.  I started writing down everything I felt, every bit of anger and anguish, in a scribbler.   I wrote in it daily, sometimes crying as I wrote.  The boyfriend I had at the time moved in with me about a week before my transplant.  While I was in the hospital, he found the scribbler, and read it.  He was a little upset with me, because I never told him how I felt, but it did help him to understand me a little bit more.  He and I are no longer a couple, but he's still someone that I know I can talk to.  Sometimes I think he understands me better than I do myself
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
dialysis - May 2004-present
PD - May 2004-Dec 2008
HD - Dec 2008-present
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« Reply #20 on: January 12, 2012, 11:13:36 PM »

Yes, do ask the doc for some help if it's starting to get to you, please.  As messed up as failing kidneys make the rest of our body chemistry, it's no wonder that we end up depressed.  Not that the whole life-threatening illness thing is bound to be much of an upper as it is!

I will chime in with votes for a kitty, too.  I had to go cuddle mine at least once before I could type this out.  I'd lose my mind without my Fizzy.

BUT, if the landlord says no to a cat, can I suggest a few other critters, too?  Landlords rarely object to small critters in cages.  I've had guinea piggies before.  They can be pretty cuddly, too, and like to sit on laps.  It's fun working on building all kinds of ramps and tunnels for their cages, which I've no doubt you'd enjoy, having seen your models.  Mine used to make a cheerful "Wheet!" sound whenever I walked in the door.  It was more of a WHEEEEEET! whenever I pulled open the fridge crisper drawer with the carrot sticks, but that's fun, too.
The only note with piggies is that they pee and poo a lot - and can get pricey with the required  near-daily bedding changes.

If money is an issue, then try gerbils.  They are desert animals, which means very little cost in bedding, since they (like kidney patients) just don't pee that much.  I had 4 brothers in an enormous tank and rarely needed to change the pine fluff more than once every 3 or 4 weeks.  They preferred that I didn't, anyhow, because they spent ages burrowing tunnels in the bedding and around the ramps and structures in the tank.  If you get them young, they can be trained to be handled a lot as well.  Mine loved shirt pockets for riding in, and would curl up to take naps in them when they weren't running around my shoulders and on my lap. 

I've also had pet mice, and I've had friends with pet rats.  The rats were very intelligent and quite fun to play with. 

I've always wanted a bird to chirp at me, too - but I wanted a transplant more, and I'd be heart broken to have to give away a pet I loved, so I never got one.

At any rate, my point about the small furries is that they grow to trust to you and want your attention, just like a cat or dog.  It's not the same, of course, as something that can run to greet you but any living thing that misses you when you leave the house makes your life a bit brighter.
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« Reply #21 on: January 12, 2012, 11:28:36 PM »

Mom and I are moving into an apartment in March.  I've no idea what the pet policy is in the building, but I don't care.  My Reese is staying with me either way.  I have a feeling that if I asked, my nephrologist's partner would write a letter, saying that the cat needed to stay with me for mental health reasons.  It's kind of hard to get around a doctor's order.
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
dialysis - May 2004-present
PD - May 2004-Dec 2008
HD - Dec 2008-present
KraigG
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I feel like I'm on the Dark Side of The Moon.

« Reply #22 on: January 12, 2012, 11:55:17 PM »

Lived in an apartment in LA a few years ago that had a "no pet" policy. I didn't care. I had a kitten, and she never had to go out for a walk, so who would know?
When the maintenance folks needed to come by, I would put the kitty in the bedroom, close the door, and hide the food and water dish. Lived there for two years, no problems.

Get a pet. A quiet one.
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First bout on dialysis: June, 1990
Kidney/Pancreas transplant: August, 1990
Pancreas removed (hospital error): January, 2001
Kidney fails: August, 2011
Second round of dialysis: August, 2011
Gerald Lively
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« Reply #23 on: January 13, 2012, 11:14:32 AM »

I have Auggie and he make a difference.  Auggie weighs about 4 lbs, is mostly Chihuahua.  He is a lap dog and a face licker.  Of course I don't have the landlord problem since I live in my own abode.  My point is this: having a pet helps.

He goes nuts when I get back from dialysis.

gl
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Hodgkin's Lymphoma - 1993
Prostate Cancer - 1994
Gall Bladder - 1995
Prostate Cancer return - 2000
Radiated Prostate 
Cataract Surgery 2010
Hodgkin's Lymphoma return - 2011 - Chemo
Renal Failure - 2011
Renal Function returned after eight months of dialysis - 2012
Hodgkin's Lymphoma returned 2012 - Lifetime Chemo


Human hopes and human creeds
have their roots in human needs.

                          Eugene Fitch Ware
MooseMom
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« Reply #24 on: January 13, 2012, 11:31:47 AM »

Auggie doggie is a step in the right direction.  One step at a time, gl, and maybe you can get this all sorted out. :cuddle;
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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