PD appt didn’t go so well

[Naynay99]

Hey. Happy New Years all.  I rang in the new year drinking sparkling grape juice with my cats at home alone, which sounds quite pathetic when read aloud but ah well.
Anyway, I went to meet the PD nurses who work with my kidney dr last week to get more information.  I mentioned that I did PD as a kid, but don’t remember it well.  They gave me a lot of information and seemed really positive about it being an option until I mentioned that I have cats. 
Apparently they would have to be locked out of my bedroom at all times, which is where they normally sleep.   She seemed to nay say using the cycler with cats.  Said maybe I could do CAPD and lock them out of the room I do that in.  I asked about sleeping position bc I sometimes sleep on my stomach.  I figured they would give some advice about using a pillow or adjustable bed or something to make sure I am lying in a position that allows the machine to work, but all they said was that an alarm would go off.
When I mentioned how I don’t have any closets or basement or anything to store boxes, they had issue with that.   I cover my AC units w a sheet and use them as a cat tree, end table bc I have no place to store anything.  I don’t think I would care if the hallway was piled high w boxes but they didn’t seem to like that idea.

Overall, the more I spoke with them the less I felt like I could actually do this all by myself, and wondered if doing in center hemo wouldn’t just be easier even tho the idea of it makes me nauseous.   Anyway, at one point right before I was leaving I almost bursted out crying and then they tried to act nicer and gave me some crap to read.   But overall the appointment didn’t go very well. 

My biggest reasons for wanting to do PD is that I get to be home, not have needles, and that it’s a bit gentler on the body with less post D feeling like crap.    But maybe I can’t do this afterall.  I mean I can’t even manage to feed myself some days, how the hell am I gonna do this.   But I was able to do it at age 13, so I should be able to do it at 43!   I feel like a complete mess. 

Went for a tx evaluation at another hospital, have yet to hear back from them.   The social worker seemed concerned about my history of depression, and even tho I gave him my counselor and psychiatrists contact info, it made me nervous.  He asked me if I had any “other”major stressors going on in my life (besides kidney failure, bc apparently that’s not enough?!).   The surgeon was the same one who did my first transplant 30 years ago which was kind of neat.  But the whole experience of the tx evaluation is stressful as shat, and I feel like I have to act happy and normal so I am deemed worthy of one of their kidneys.  Yet inside I am a p*cking walking distaster.  My friends try to help, I am grateful for that, but I know they can’t relate.   But I have made sure to bring somebody at each appt bc it shows I have a support network- I’m playing the game but all of this seems like a big farce and I am just so p*cking tired. 

Sorry I kind of got off topic I think.  I see my doctor in a few weeks.  Good thing is according to the bloodwork form the hospital where I had my most recent tx evaluation, my numbers are still stable.   My doctor hasn’t given me a predicted future date when I would need to start D yet so I suppose I still have some time to weigh PD vs HD before I have to decide.  But it seems a lot more complicated than I first thought.    Idk.   It was easier when I was 13 and other ppl made these decisions for me.   I’m just scared of making the wrong choice.  I wish I wasn’t doing this all alone, that my parents lived closer by.  Ah well. 
Happy new year.  I am trying to be positive about 2019 but it’s hard to see anything but dialysis in my future.  I’m trying to plan for a transplant but not get my hopes up when I’m probably in for a long wait still.  Anyway, sorry if this makes no sense. I think I just needed to vent a bit. 













SP mod Cas

[iolaire]

Happy New Years! 

From my experience in center treatments were fairly easy. That’s not always the case for everyone.  It’s convenient to have someone else’s clean environment and also to have people manage most of everything.  My center was happy I was interested in my own care and took my recommendations for how much liquid to remove, etc. if I was to do it again I’d try to learn to do my own needles (but if you don’t like the needles that might be something you would want to pass on.)

[cassandra]

Hi Naynay99 Happy New Years to you too. I did PD for 5, in-center D for 10, and home hemo for 6 years. Yes PD and APD was definitely my most prefered D time, but with your cats being so much part of your furniture, you might want to consider in-centre D.


Also I wanted to say that you could always change your mind, and your body will do that for you anyway.
It took me 10 years to get myself to even try to get my own needles in, and to get so frustrated with it, and angry too. So give yourself some space in your head. You don't have to decide everything at once.


Love, luck and strength, Cas

[Mr Ken]

 

They gave me a lot of information and seemed really positive about it being an option until I mentioned that I have cats. 
Apparently they would have to be locked out of my bedroom at all times, which is where they normally sleep.   She seemed to nay say using the cycler with cats.  Said maybe I could do CAPD and lock them out of the room I do that in.

The concern is any possible external contamination. Cats are mysterious and you would not want the animal playing with tubing or climbing on top of the machine. I have yet to see any cat that does not hop or climb on things..... The concern is valid. It takes ONE TIME to get an infection in the cavity that most likely will wipe the PD  endeavor.  That goes for any animal..... 

I asked about sleeping position bc I sometimes sleep on my stomach.  I figured they would give some advice about using a pillow or adjustable bed or something to make sure I am lying in a position that allows the machine to work, but all they said was that an alarm would go off.

Yep, you cannot crunch the tubing by laying on it......... That is all there is to say about it. You could lay on your side. If teh alarm does sound just move a little bit to shut it up... 

When I mentioned how I don’t have any closets or basement or anything to store boxes, they had issue with that.   I cover my AC units w a sheet and use them as a cat tree, end table bc I have no place to store anything.  I don’t think I would care if the hallway was piled high w boxes but they didn’t seem to like that idea.

The boxes of dialysate are not light... Think about the weight also. Weight for the supplies are around 1000 pounds....

Overall, the more I spoke with them the less I felt like I could actually do this all by myself, and wondered if doing in center hemo wouldn’t just be easier even tho the idea of it makes me nauseous.   Anyway, at one point right before I was leaving I almost bursted out crying and then they tried to act nicer and gave me some crap to read.   But overall the appointment didn’t go very well. 

Most likely the will want to come out and do a house area inspection. If they feel it will not work they will let you know.

My biggest reasons for wanting to do PD is that I get to be home, not have needles, and that it’s a bit gentler on the body with less post D feeling like crap.    But maybe I can’t do this afterall.  I mean I can’t even manage to feed myself some days, how the hell am I gonna do this.   But I was able to do it at age 13, so I should be able to do it at 43!   I feel like a complete mess.  [/quo]

PD is more time consuming and you have to worry about inventory and managing that. Don't be fooled into thinking it is just at night bedtime..... Blood draws, clinic visit, be home for the delivery....... The good side is not dealing with Hemo needles, side affects from Hemo, a little less food restriction... FLUID IS a bit more tricky with PD because you are not pulling as much...

Went for a tx evaluation at another hospital, have yet to hear back from them.   The social worker seemed concerned about my history of depression, and even tho I gave him my counselor and psychiatrists contact info, it made me nervous.  He asked me if I had any “other”major stressors going on in my life (besides kidney failure, bc apparently that’s not enough?!).   The surgeon was the same one who did my first transplant 30 years ago which was kind of neat.  But the whole experience of the tx evaluation is stressful as shat, and I feel like I have to act happy and normal so I am deemed worthy of one of their kidneys.  Yet inside I am a p*cking walking distaster.  My friends try to help, I am grateful for that, but I know they can’t relate.   But I have made sure to bring somebody at each appt bc it shows I have a support network- I’m playing the game but all of this seems like a big farce and I am just so p*cking tired. 

A BIG BIG SMILE That is all I could say about this.. 

Sorry I kind of got off topic I think.  I see my doctor in a few weeks.  Good thing is according to the bloodwork form the hospital where I had my most recent tx evaluation, my numbers are still stable.   My doctor hasn’t given me a predicted future date when I would need to start D yet so I suppose I still have some time to weigh PD vs HD before I have to decide.  But it seems a lot more complicated than I first thought.    Idk.   It was easier when I was 13 and other ppl made these decisions for me.   I’m just scared of making the wrong choice.  I wish I wasn’t doing this all alone, that my parents lived closer by.  Ah well. 
Happy new year.  I am trying to be positive about 2019 but it’s hard to see anything but dialysis in my future.  I’m trying to plan for a transplant but not get my hopes up when I’m probably in for a long wait still.  Anyway, sorry if this makes no sense. I think I just needed to vent a bit. 

You are concerned and there are valid points that were made. I am surprised that there was not mention of the animal for the transplant recovery..... When I had my very short TX evaluation, animals was a topic of discussion.. Do you have any... if so where do they stay..... 

This is one thing it is not a good idea to try and cut corners with......... You would be palying Russian roulette and you may get the BANG!

I do PD as a patient so if you have any other questions ask away. Good luck to you.

Ken













SP mod Cas

[Mr Ken]

My biggest reasons for wanting to do PD is that I get to be home, not have needles, and that it’s a bit gentler on the body with less post D feeling like crap.    But maybe I can’t do this afterall.  I mean I can’t even manage to feed myself some days, how the hell am I gonna do this.   But I was able to do it at age 13, so I should be able to do it at 43!   I feel like a complete mess. 

Sorry about the screw up with quoting

PD is more time consuming and you have to worry about inventory and managing that. Don't be fooled into thinking it is just at night bedtime..... Blood draws, clinic visit, be home for the delivery....... The good side is not dealing with Hemo needles, side affects from Hemo, a little less food restriction... FLUID IS a bit more tricky with PD because you are not pulling as much...

Went for a tx evaluation at another hospital, have yet to hear back from them.   The social worker seemed concerned about my history of depression, and even tho I gave him my counselor and psychiatrists contact info, it made me nervous.  He asked me if I had any “other”major stressors going on in my life (besides kidney failure, bc apparently that’s not enough?!).   The surgeon was the same one who did my first transplant 30 years ago which was kind of neat.  But the whole experience of the tx evaluation is stressful as shat, and I feel like I have to act happy and normal so I am deemed worthy of one of their kidneys.  Yet inside I am a p*cking walking distaster.  My friends try to help, I am grateful for that, but I know they can’t relate.   But I have made sure to bring somebody at each appt bc it shows I have a support network- I’m playing the game but all of this seems like a big farce and I am just so p*cking tired.

 

A BIG BIG SMILE That is all I could say about this.. 

Sorry I kind of got off topic I think.  I see my doctor in a few weeks.  Good thing is according to the bloodwork form the hospital where I had my most recent tx evaluation, my numbers are still stable.   My doctor hasn’t given me a predicted future date when I would need to start D yet so I suppose I still have some time to weigh PD vs HD before I have to decide.  But it seems a lot more complicated than I first thought.    Idk.   It was easier when I was 13 and other ppl made these decisions for me.   I’m just scared of making the wrong choice.  I wish I wasn’t doing this all alone, that my parents lived closer by.  Ah well. 
Happy new year.  I am trying to be positive about 2019 but it’s hard to see anything but dialysis in my future.  I’m trying to plan for a transplant but not get my hopes up when I’m probably in for a long wait still.  Anyway, sorry if this makes no sense. I think I just needed to vent a bit. 

You are concerned and there are valid points that were made. I am surprised that there was not mention of the animal for the transplant recovery..... When I had my very short TX evaluation, animals was a topic of discussion.. Do you have any... if so where do they stay.....

This is one thing it is not a good idea to try and cut corners with......... You would be playing Russian roulette and you may get the BANG!

I do PD as a patient so if you have any other questions ask away. Good luck to you.

Ken







Removed quote error mod Cas

[sahern]

We have a cat and a dog.  If anything was said during the workup to PD I do not remember.  I was told no pets in the room when hooking up and unhooking.  I was worried about the animals biting the line but during train the nurse most animals will leave the tubing alone as they can smell the bodily waste and do not like the smell.  I watched the animals closely at first and even now I still keep and eye on them.  I have heard where a cat has chewed the line and caused an infection in one person.  The only trouble I ever had with the animals was the dog.  He is a big dog and one night he laid down next to my chair.  He must have pinched a line enough with his weight to cause a low flow alarm.  I had him move and everything was fine after that.  During the home visits the nurses haven't said any ting about the animals.  They ever play with them.  Good luck with getting to do PD. 

[kickingandscreaming]

I did PD for 3 years with my dog in the room--for connections and everything else.  Never an issue.  But she was a mature dog (now deceased).  When my Neph said "The dog has to go."  I asked her if she told that to patients who live with children.  Of course not.  I reminded her that children are germ factories so if my dog had to go so did everyone's kids.  She thought my argument was sound.  I always say that if I can no longer do PD and am forced to do HD I will sign up for hospice before going that route.  Good luck, NayNay.

[Mr Ken]

I did PD for 3 years with my dog in the room--for connections and everything else.  Never an issue.  But she was a mature dog (now deceased).  When my Neph said "The dog has to go."  I asked her if she told that to patients who live with children.  Of course not.  I reminded her that children are germ factories so if my dog had to go so did everyone's kids.  She thought my argument was sound.

I think it has to do with the person and the dialysis center too..... I do get it though about overly concerned with animals. It only takes one time to get nailed. Either the effectiveness of the PD treatment will be diminished or one may lose the option of PD all together. Why risk it. I still put on the mask, scrub the hands, sanitize, then do the exit wound care for the connect line.   

I always say that if I can no longer do PD and am forced to do HD I will sign up for hospice before going that route.  Good luck, NayNay.

Yep..... but I still say that PD machine is going to end up in the driveway smashed in 100 pieces........

ken

[Cupcake]

I did PD for two years until recent transplant. The supplies are a huge pile, but some companies offer twice monthly deliveries for people with limited storage. Being proactive with trash/recycling boxes also helped keep the clutter down. There is a lot of waste.

I am a stomach sleeper and didn't have much trouble at all. I taped the tube going straight right and wrapped the hose around my back, slept on my right side/stomach and that didn't cause any kinking-but I'm not very bony so maybe someone with sharper hip bones would have more trouble. Don't have any experience with pets but think if you shut the cats out whilst hooking up/disconnecting and watched to make sure they weren't attracted to the wiggling hoses, should be fine.

I saw how in center HD abused my mother's body with large volume shifts; that can't be good for your other organs/brain. I felt great while on PD and didn't have any trouble with low blood pressure. Also I was in control, doing my own care which was mentally easier for me--I like to be the captain of my own ship!

Best of luck, NayNay

[Mr Ken]

I saw how in center HD abused my mother's body with large volume shifts; that can't be good for your other organs/brain.

See I knew I was not getting Alzheimer with the memory issues while on Hemo.... 

I felt great while on PD and didn't have any trouble with low blood pressure. Also I was in control, doing my own care which was mentally easier for me--I like to be the captain of my own ship!

DITTO!!!!

[Naynay99]

Hey. Thanks everyone for your comments.  It’s helpful to hear from ppl who have actually done PD.
I think I could live with locking the cats out of the bedroom if I had to.  I understand the why during hookup and off, and my young guy might be curious around the tubing.  it’s tough tho, my one cat has slept with me for the last 18 years!   
It seems like kind of a dumb reason for making a decision on dialysis modality though.  Idk.

Mostly, I just want to pick the method of D that stresses my body the least, and allows me to feel well enough to keep working full time.  I see my dr soon so will discuss it more with him.  Thanks for the different persectives on it. I supose whatever dialysis door I choose will suck a lot, it’s just what flavor of suckage I personally can better cope with. 

I’m hindsight, maybe the nurses were just so blunt about PD and all its concerns and things to consider so I would have a more realistic view of it, not the sugar coated version that their pamphlet presents.  It’s just that I did it before so it seems less scary, and I felt well on it.  But I know I need to stop obsessing about the pros and cons of PD vs HD in my head or I will lose my shat.

Anyway, wish me luck w the tx evaluation decision.  I should hear from them soon.  I have one last tx center my dr wants me to list at, but I may wait a few weeks.  I can’t keep taking days off of work for appts.   They want u to have a full time job with private insurance to pay for the surgery and meds, but they never schedule anything at a time that is convenient to ppl who actually have a job!  Ah well. 
Take it easy.  I will try to keep my head from exploding.