PD catheter surgery last week - I think its gonna be ok . . .

[MyRenalRomance]

As I had mentioned in my intro, my vascular surgeon tried 3 times to create a hemo dialysis entry site in my arm, but my veins are too small (still using the temporary tesio catheter in my chest).

So . . . I finally saw a new surgeon last week, and had my peritoneal catheter inserted into my abdomen, last Friday.  The surgery went very well, and I had a follow-up appointment, today.  All is well so far.   

I meet my training nurse and social worker at Well Bound on Friday.  I guess I will begin peritoneal training within the next week or so.  I know this probably sounds very boring compared to all of the stories and experiences a lot of our members have endured. 

I'm just a little nervous about switching from hemo to peritoneal.  Just a little.  I was really nervous before the surgery!  I was so racked with anxiety that I could not express myself coherently on the boards (to ask for reassurrance).  That's how scared I was.   

But, over the weekend, I decided that this is the current pathway on the course of my life, so I need to make the best of it.  (I never minded going to hemo 3 days a week.  In fact, I will genuinely miss the nurses and techs who took such good care of me (always w/ smiles, and wonderful camraderie). But, I'm beginning to appreciate the advantages that I will have with the PD.   

I'm hoping the training will go well. 

If you are on PD, I would love to hear from you.  The good, the bad . . . any tips, any suggestions.
     Thanks so much in advance!




EDITED:  Moved post to proper thread "Home Dialysis" - Goofynina/Admin.

[MyssAnne]

Honey, you're gonna LOVE it!!!!  It's a lot of work, it can be a pain setting up (cycler), BUT the time saved is gonna be TREMENDOUS!!! There is also the feeling that YOU are in control!!!!   Oh, and NEVER boring, by any means!!!  Suggestions? Take the time to learn the procedure(s) well, so if anything goes kablooie you can fix it. Trust me, it will!!!  BE STERILE!!!! Peritonitis is NOT fun. Trust me on that.

[KT0930]

Get trained on the cycler as soon as your clinic will allow it. PD has huge advantages over hemo, but doing exchanges four or five times a day can get cumbersome. The cycler allows you to do almost all your exchanges at night while you sleep - some people still have to do one exchange during the day - and lets your days be free to LIVE your life!

Invest in some good belts to keep your catheter tucked out of the way under your clothes. I've been on PD for eleven months and have not done that, and the skin on my abdomen will probably never be the same from the tape I have to use. Many people here recommend the ones at www.patientspride.com

Ask lots of questions during your training, and don't be afraid to call your training nurse after you get home with it WHENEVER you have a question. The better you understand all the "hows" and "whys", the better you will do on PD.

Best of luck, and check out the threads in the Home Dialysis section to get more great advice. Keep us informed of how it goes!

[angela515]

As everyone else as noted so far, your going to love it... (hopefully, not everyone does)... for me, PD is 100x better than hemo and my first choice if I had one. I also cannot get access' in my arms, my viens are way too small and all used up. If I had to go on hemo again, and wanted an access put in permanently, it would have to be in my thigh. Ugh! 

Good luck with your training!!

[Joe Paul]

No experience with PD, but from all I have heard it is lots better than hemo. Good luck with training and your PD 

[Ken Shelmerdine]

I can't imagine what life would be like on haemo. I can honestly say that being on PD dialysis has not had anything like the impact on my life that I thought it would have. There's no needles which has got to be a big plus, and you don't feel 'washed out' after the therapy. Setting up the machine takes about as long as washing the dishes after dinnner. That's the way I look at it.

[MooseMom]

I'm not on dialysis yet, but I'm close enough to it that I need to start making some plans/decisions.  I am very interested in your newbie PD experiences as your questions are probably going to be very close to the ones I will have myself.

Good luck, and PLEASE keep us posted on your progress!

[goofynina]

MyRenalRomance, your gonna be just fine my friend, there is alot of information on PD here in this thread and there are several members (myself included) that can answer any question you may have (or try to at least)    Do not hesitate to ask questions as you feel needed, we are here for you 

[MyRenalRomance]

I apologize for not responding sooner.  i didn't realize my post was re-directed to the correct forum.  Oops!
But, now I know! 
Today is my last day to go to the clinic for hemodalysis.  I'm sad to leave the friendly faces, but as many of you have pointed out, I think I will definitely begin to enjoy the freedom and control  that will come with pd.
(I start on pd tomorrow!!!    - I am getting pretty excited thanks to the encouragement and support YOU, my new friends, have shown me.  THANK YOU!)

Thank you so much to everyone who responded!  I appreciate your support so much!

[Ken Shelmerdine]

Keep us up to date with your progress.

[paris]

I also want to learn all I can about PD. Those of you that are on it make it sound like a good choice.  I am reading every post that has to do with PD, so I will be ready to make the decision when the time comes.  Thanks to all of you!

[MyRenalRomance]

Hi everyone!
I apologize for not posting sooner, but I've been busy getting used to my new PD. 
(I switched from in center hemodialysis to at home peritoneal dialysis exactly 1 week and 1 day, ago.)

I LOVE it!  I can't believe I was so opposed to the idea of PD, when this entire situation began! 

My first day was a bit disenheartening, I admit.  My  abdomen felt like it was going to burst.  I felt pregnant, and ready to give birth!  However, as my abdomen began to adjust, I felt much better.  I honestly don't think I look 6 months pregnant like my nephrologist told me I would look, but perhaps just a couple or few months (sigh of relief!  ).  I mostly wear yoga pants or sweats, but I actually wore jeans last night! 

I don't mind doing 4 exchanges during the day.  Its not as hard as I thought it would be.  I am excited about the prospect of switching to the nightime cycler, and may do so, next month.

I, definitely, have more energy, now, and my family has noticed.  I went to a Sharks hockey game last night, and I'm going to a musical play tonight! When I was on hemo, I never would have had the energy or inclination to schedule two evening events consecutively! 

My pd is just a part of my everyday routine, like brushing my teeth . . . ! 

I hope my story can be helpful to others who are reluctant or hesitant.  The fact that my veins were not cooperating for hemo, has actually been a blessing in disguise!

  Thank you to everyone on the boards who have shown such wonderful support and encouragement   .  You're right - you do get your life back with PD.  I never would have believed it! 

I'll be having my tesio catheter removed from my chest in the next week or so.  You know what that means:  I'll get to, finally, start taking regular showers, not sponge baths!   

That's my story, and I'm sticking to it!   

[goofynina]

    I am sooooo happy that you are doing so well on PD  I hope it  continues to be a good experience for you    And remember, any questions, we are here for you 

[paris]

This has been a great thread.  I went to my second information class on PD and they had two PD patients there to answer questions.  It was a great way to learn about it. They ladies talked about everything---diet, energy,depression, everything.  They both told us how good their life is now. One had been on in-center hemo and switced to PD. She is able to keep working and raising her son.  The other has only done PD.  They gave me their phone numbers so I could call anytime if I need to.  I think it was a great thing for the clinic to do; putting real people who are already living with PD with ones trying to make the decision.  My nephs office is on the second floor of the dialysis clinic.  Everyone know each other on both floors and I think that holds them more accountable.  

RenalRomance, keep posting --want to hear more good things about PD!

[Lulu]

Hi My Renal Romance,
Congratulations on your succssful switch!!! I was going to do PD and while researching it I came across a really nice PD bans that are custom made for each patient. It holds the catheter really nicely. Here is there link for you.

http://www.patientspride.com/pdsecurityband.html


Again, I am so happy that it all worked out for you.

Lulu

[okarol]

Thanks for the great update RR!
You sound great!

[KT0930]

Thanks for the update! So glad everything is going so well for you!!!

Paris, the patient education classes seem like such a great idea. I've never heard of anything like that, and as most of you know, I've been dealing with ESRD my whole life!

[paris]

I cannot say enough good things about my neph and his group.  They seem to do more than other groups or centers I have heard about.  The classes are a marvelous idea and in the future,  I would love to be the one to help others.

So, all of you on PD, keep posting!

[MyRenalRomance]

Sorry, its been so long since my last post.  Life gets so busy!

Update: 
I had a pd catheter re-positioning surgery Nov. 30th.  I had to go back to in-center hemo for 2 weeks while by body healed. Afterwards, I was so happy to resume PD when my doctor gave the go-ahead!

I was back on PD for 1 day, and, unexpectedly, experienced a complication.    I took my daughter to a SJ Sharks player signing session (  Steve Bernier!) and we stood in line for about 3+ hours.  When I got home, I realized I was "leaking".  Seems 1500 ml for a 95 lb lady might be a bit much (but it wasn't like I was doing aerobics or anything like that!) and/or 2 weeks was not enough time for my body to heal from the catheter re-positioning surgery.  Doc says it could be either/both.

So, back to in-center hemo for 3 more weeks.  At that/this point the nighttime cycler is my last resort.  I can fill 1600 ml of fluid per dwell, and I won't risk any complications  because  there will be less pressure from the fluid while I'm lying down (sleeping). I was a bit hesitant about being hooked up to a machine for 9 hours, but, my WellBound nurse helped me sort out my issues/woes. 

   Last night was my first night on my new cycler!!!  I LOVE IT!     It was easy to set up, and easy to use.  Plus, NO MORE DAILY MANUAL EXCHANGES!

My fingers are crossed that my new nighttime cycler will be the answer for me . . . its only been 1 night, but I have no complaints!  (I am using the Baxter Home Choice)

Thanks to all who encouraged/advocated the use of the nighttime cycler.  I re-read some of those posts, before last night, and they helped put me at ease even more.   

 
Charlene


 

[goofynina]

So glad the cycler worked for you, i hope you continue to enjoy being on it.  I am on it for 13 hours with 6 dwells of 3000 each    And i still love it   Good luck with everything and remember we are here for you if any questions arise. 

[Ohio Buckeye]

I'm g;ad the cycler is working for you.
I have been on the Baxter Home Choice also for about 16 months.
Setting it up each day is a small inconvenience compared to spending
time in-center.  I went to a class which discussed both kinds of dialysis and
I left it knowing that I wanted to do PD.  I'm very happy with it.
There is only one hospital here that I would go to that really knows much
about PD.  They are very good and I always say take meto Riverside.
Some of the nurses at other hospitals have not even heard of PD.
Riverside has a dialysis floor that does both.  So check out the hospitals.
Because of my leg amputation and the problems I have been having
a friend of mine went to a morning class on PD at the dialysis clinic and she is setting up for me
right now.  Otherwise I'd probably have to do hemo.  and I hope that day never comes.
I'm glad you are doing well and have more energy.

[KT0930]

Glad to hear the cycler is working so well for you! I absolutely loved PD (as opposed to hemo), and about two weeks ago got to see the neph who had recommended it to me. We had met when I was in the hospital, and he didn't remember me, but I'll never forget the doc who allowed me to live so freely while on dialysis.