so I just found out my newly placed PD catheter moved and is not working correctly. I have to meet with the surgeon this afternoon. I don't know what he is going to tell me. I really don't want to do Hemo and I don't want another operation since I'm just starting to heal.
Just wondering if this has happened to anyone before?
While I can appreciate your frustrations, I have to ask, "What are your options?" Perhaps it's best to wait until after you see the surgeon and find out what and why changes have to be made and then deal with it. Make sure you ask the doctor all the pertinent questions and understand the choices. Get a time that he needs an answer by and speak to your other family and friends and if needed your other physicians and get their input. Remember, ultimately it's your decision, so have all the information you need to make the choice you need.
On a side note, don't disregard HD in any form. PD is not a permanent solution for many people and eventually, you may have to switch to something else. Do research early so that if that time ever comes you'll be ready and comfortable to make any changes required.
Well- just met with the surgeon. I’ll be having surgery tomorrow to correct my catheter. Apparently they will be stitching my catheter to my ovary. I’m so upset!!!
Hi Nikki41775,
I'm so sorry this has happened to you! Hopefully this is just a bump in the road and you can get back to using PD! Best case scenario, maybe you can do dietary changes until you heal? I'm not sure where you are at exactly, but sometimes that can be an option. Good luck tomorrow and please keep us posted!
Hi Ladybug
I literally just started PD by my self last Friday so I’m not far in at all. My nurse thinks I’ll be able to start back up again tomorrow but of course I have to confirm with my surgeon.
I’m just so frustrated and totally ready for 2018 to be over
I’ll check in after my surgery. Thanks for listening
Hello Nicole...I am so sad to here you are having such a hard time...I don't blame you for feeling frustrated...I would feel the same way...Its amazing with all the Billions of dollars that been spent on Kidney Research that they do not have this technique streamlined...at least to be able to keep a Catheter Tube in place....My thoughts are with you today and I pray that this Surgery will be positive and bring you some relief...Hang in there Pumpkin !!
Hi! Well I’m ok. This surgery wasn’t too bad. I came home last night and went to bed for 13 hours lol.
Turns out my catheter was wrapped around my Fallopian tube!
Thanks for thinking about me!!!!
Around your fallopian tube !!...OMGosh...no wonder you were in so much pain....so glad they found you some relief....thanks for letting me know...rest well
Hello Nicole...Hope today finds you feeling better and stronger...You have had a crazy couple of weeks. May the New Year find happier roads for you !...Shelly
Thanks Shelly!!!
How are things going now...has your surgery helped with the drain pain ?
Going good. Thankfully the pain has lessened a little bit which is good. How are you?
i am still hanging in there...go back for labs this month and dr visit...i feel i have dropped...but i have thought that before...i am going to tell him your story and tell him i want my port done now...so it has plenty of time to heal for when i need it....does doing the dialysis make you feel better than before.?
Hello Nicole...Hope all is going well with you..Can if you tell if the Dialysis is helping you feel better than before Dialysis yet ?....Or are you still just adjusting to it ?
Hi! I want to say that it’s helping me. I definitely notice differences. Definitely still adjusting to it though.
How are you?
I am doing good ...just hanging in there...Glad to hear that Dialysis makes you feel better....I get so tired of being tired.....What were your GFR's before you started PH ?
Glad you are doing well. I understand about being tired! Before I started, my GFR was 11
Are you still doing okay ?
I’m still ok. Had a tooth pulled yesterday so I’m still sore. My PD nurse changed my prescription so I’m super happy! How are you?
doing okay....do labs next week so not sure where i sit there.but i feel i have lost gfr...but i have thought that before...i go see my neph in mid feb and i think i will ask to have cath put in for PH...i am going to tell him your story and i want time to heal well....sounds like you are doing a lot better...i am so happy for you and it is comforting to know that dialysis helps people feel better and not just keep us alive...are you back at work yet ?
Oh yes. I’ve been back to work for a month already. I only took a week off to recover and half days for a week for training.
Otherwise I feel pretty good. I like my new script so that makes me feel normal again.
Keep me posted!
That is so awesome...so glad you feel better....so dialysis isnt the horrible image we all fear ?
PD isn’t. Although I can’t speak about hemo. I’m scared of hemo!!
Oh..I agree...I would dread doing Hemo !!....I will try for the PH...but the manuel one that I would do every 4 hours during waking hours...I will see how that goes, I might change to the machine at night like you are doing...Trying to keep my mind open about both...i have had a hysterectomy 20 year ago...they took ovaries...tubes..and uterus...so less stuff for tube to get hung up on...i hope !!!
Hi Ladybug
My surgery was a success. My catheter moved and was wrapped around my Fallopian tube. I’m doing ok this morning. Just a little sore but bearable. The surgeon said I can resume my treatment tonight. Hopefully the surgery also will have helped me with the drain pain
Thanks for thinking about me!
I am so thrilled for you! I just saw your post right now. (Jan 6 2019) I had 3 PD Catheter replacements, which then put me on hemo, where they had to replace the cvc twice in a week - That was the worst pain of anything I ever endured as it was put in. But each PD Cath surgery took 6 wks healing. The final one on the last day of healing leaked again! I then had emergency Hemo which for me was pure hell. Once I got on PD I was so relieved. I felt so much better on PD. The most important thing to know is the moment you notice anything - any leaking you get immediately to the ER. I was on the couch and suddenly I leaked at 1am and when right to hospital. It is very common, unfortunately, these PD catheter repositionings and replacements. They lined my peritoneum with the tubing and the coil between the uterus and my bowels. Ugh that pain when the coil hits the bowel. PD however, I planned for 8 years ahead of time for and I found it the very best dialysis. I felt so much better. That drain pain is the worst, but once the surgery is healed and all is working correctly, the pain you will be able to adjust with the machine and how you move. I was on PD for 2 yrs before my transplant. I am so happy all is going well. The process of dialysis is extremely overwhelming as it is all so foreign. I am glad you are doing well. I am so happy the surgery was a success! I had 3 surgerys as I went on dialysis early and then after I put on emergency hemo I couldn't get my next and finaly PD Catheter Replacement until a month later. I then transfered into a horrific facility with very cruel corrupt RNs who left my Central Line in my for a total of 6 mos, telling me on the 4th month I could die after 3 mos. as it's cite was the most prone to infection. I had no clue what was going on as I was so sick and trusted these people. I had no issues with them. It was just my bad luck I ended up with bad people. I got myself the hell out of their a year later and my old facility repaired me for the transplant. Its and extremely overwhelming and hell of a process. But you are not going to experience what I did. Just make sure you keep a close eye on your cite and be extremely careful. I was fine had just finished training on that last surgery then boom July 3rd 6pm it leaked. I caught my RN just in time. She was the great RN and great facility. July 5th they set me up for Emergency Hemo. I say this so that people don't take for granted the healing process. The very last day of training and it leaked. All was fine until then. I wish for you the best of healing and yes I am excited this surgery was a success! My best to you and your new lifestyle changes. You will adjust, you will do wonderful and you will feel better. Wish you and all a good feeling day and to make it through each day. Saying New Year can be far off and too much in all the suffering many experience. Making it through each moment and minute is much more of any celebration than a time so far off in the distance. Our New Year is every day. Every new moment we wake and hope to get out of pain. Wishing for You and all many moments of repreive from what you are enduring. We are a unique community! In solidarity, my fellow Patients!
join natural kidney journey on facebook...i have been able to raise my gfr from 26 to 41 in less than a month...that was my situation it is different for everyone...this fb group is dedicated to changing your diet...supporting your goals and so much more...it is admin by a couple where the wife was able to get her husband off of dialysis...she raised his gfr from 3 to 39-41...he has been off dialysises for over 14 months...there is another person on site that achieved that same thing...plus numerous others who have raised their gfr significantly by diet and determination... here is the link... tps://facebook.com/groups/natural... answer the 3 questions when you click on the site to join or you will automatically be deleted...
APPROVED FOR KIDNEY TRANSPLANT BUT NEED A DONOR...HOW DO I GET MY STORY OUT? So scared about dialysis before getting a kidney. 
GFR of 5 To start dialysis or not
Phosphate binder, not so good 
Fatigue from PKD has finally hit
I'm new. 1st post. Stage 5 and feeling it.. this is my 2nd rodeo but 30 years later
