Seems PD is not for me

[Joe Paul]

After my 1st PET test, it seems my clearance is low, only 1.3 and my Doctor likes at least a 1.6 clearance. We tried to remedy the situation by switching me to extraneal, and increasing my solution from 2000 to 2500, which is where the problem begins. The first week on the new prescription, I went from a steady 213 pounds to 228 pounds, left ankle and foot so swollen, it hurt to walk. I did manage to remove the fluid by doing all red bags for a day and a half. Last night I went back to the green bags, and only pulled 428 total UF. It doesn't take a brain surgeon to figure out if that keeps up, I will soon be overloaded again with fluid. I was told to watch my intake (which I do anyways) so what did I gain by switching to PD? Not much of anything. With all the supplies and mess PD makes, its just not worth the hassle to me, I sure do not feel any better than when I was on hemo, probably the only gain was a savings on fuel, not having to drive to the center 3 times a week. I have fought depression for the 2 years plus I been on dialysis, but am afraid its now got the best of me, I am so down. I think I will call the nurse today, and bail out of PD, and as much as I hate it, go back to hemo, and if nothing else, at least my home will be back to normal. The Doctor told me he thinks the umbilical surgery, and the mesh in my belly, is wicking the fluid back into my system, and it was a matter of time before I would be back on hemo anyways, so I might as well go back now and get it over with. Its not like I didn't try, some things are just not meant to be. It will be nice to soak in a tub again, and go swimming if I like, the only bright spots in my never ending drama.I will update as I get more information, but for now my mind is set on giving up PD.

[Sluff]

I'm sorry PD didn't work for you. This whole ESRD and dialysis lifestyle can really be a downer at times. Please know I genuinely understand the frustration you face but I pray that things go back to what you were comfortable ( maybe not the best word choice)with prior to training for PD. At least you gave it a try.

[monrein]

JP, I'm so sorry to hear that it didn't work out for you and I know you were so hopeful and gave it a good shot.  More importantly, I hope you start to feel better both physically and emotionally.  There's so much stress associated with all we go through even when things go exactly as planned so when they go awry the pressure is through the roof.  I'll be thinking of you and send you a big hug right now.
 

[pelagia]

JP - I too am sorry to hear that things did not work out for you with PD.

My husband's aunt tried PD, but she also had problems with leaking.  I know that she was disappointed when that did not work out for her.

It is only over the last year that I have come to develop an understanding of the physical challenges and emotional stresses associated with dialysis, through my husband's experiences and through reading the threads here at IHD.  I truly hope that you will begin feeling better soon.   

[Joe Paul]

Thanks Guy & Gals.Its official, I start back on hemo 5 45 tomorrow morning. Though PD may bring others "freedom" as I said, for me it has been let down after let down. The only other thing left to try is a transplant (our centers do not do home hemo) is a transplant, and I pray that comes along and soon!

[lola]

JP so sorry PD was not for you. Sending you lots of love, hang in there my friend

[MyssAnne]

Oh JP. I'm in the same boat, except I started with PD, and am now having to do HD, due to so many problems with the site.  I understand.  Hopefully you still have your fistula?

[KICKSTART]

Im sorry pd didnt work out for you but you must do what you feel is best , not everyone likes having to do their own dialysis. I dont know what your centre is like but it might be a good thing to be around people while your feeling depressed as the one thing i have found is pd is a lonely place!  I hope your spirits soon lift , i know what those black clouds can be like ..

[Joe Paul]

Oh JP. I'm in the same boat, except I started with PD, and am now having to do HD, due to so many problems with the site.  I understand.  Hopefully you still have your fistula?

Yep, still have my fistula 

[rose1999]

Hope all goes well with your return to HD, sorry things didn't work out but you gave it your best shot. Take care   

[skyedogrocks]

So sorry to hear about this JP, I know you were hoping this would work.

What about home hemo?

[okarol]

Hi Joe Paul,
It sounds very frustrating and I am sorry to hear about the PD. Thankfully you still have the fistula so you can get HD right away. I hope you feel better over the next week or two and with the fluid off your spirits may lift a bit. xoxoxo

[paris]

Joe Paul, so good to see you post---but I am sorry for the reason of the post.  I am sorry it didn't work out for you.  I hope after tomorrow, you start feeling better.    You have been missed here.  Sending lots of good thoughts, love and support to you.      

[Laurie]

Joe Paul, I'm sorry PD didn't work out for you. I hope all goes well with Hemo and you start to feel better.
I'm assuming you don't want the PD belts anymore?

[angela515]

Sorry Pd didn't work for you hun.    If I can't do PD the next time I am on dialysis, I might have to choose no dialysis, because me and hemo do NOT get along.

Wish you all the best 

[thegrammalady]

at least you can say you tried. which is better in my book that  always wanting to but never doing anything about it. hope you're feeling much better very soon. we luv ya!

[CW]

Hey JP,

I feel your pain my kidney brother - I started to call today to quit PD - I have been overloaded fro weeks I have felt like hell since I started. I really wanted it to work and I kinda feel like I failed at it. But life goes on I guess we can say we went back together. I need my life back - question though did they bug you for the supplies? Did you schedule a removal of your catheter?

Best of luck JP I hope your return to Hemo is a triumphant one ! (I am thinking of hiring a marching band for my return  )

CW

[Mimi]

JP soooooo good to hear from you.  It's a real shame the PD didn't work for you, but getting back to
Hemo may put you back on track again.  You will be in my prayers to feel better both emotionaly and
physicaly.

Love, Mimi

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[Joe Paul]

Hey JP,

I feel your pain my kidney brother - I started to call today to quit PD - I have been overloaded fro weeks I have felt like hell since I started. I really wanted it to work and I kinda feel like I failed at it. But life goes on I guess we can say we went back together. I need my life back - question though did they bug you for the supplies? Did you schedule a removal of your catheter?

Best of luck JP I hope your return to Hemo is a triumphant one ! (I am thinking of hiring a marching band for my return  )

CW

From what I understand, they want the cycler only. I called the Surgeon yesterday for an appt. to have the catheter removed. That will be the 25th, I hope it wont be too long after, I hate this thing hanging out of my belly.

[Red from Canada]

Hey, Joe Paul.  I am so sorry to hear of your problems with Pd.  I was hoping it would be good for you.  It took me a couple of months to straighten out my original problems.  After my hip surgery and comstipation it quit working.  I am scheduled in 2 weeks to have laparoscopic surgery to remove the omentum and repostion the catheter and hardly wait to get back to PD.  My temporary Hemo is 3x per week for 4 hours and is a real big chunk out of life when you add in the commute.  One thing, we are told to ALWAYS put heparin in the heater bag each treatment, as fibrin can block even if it doesn't show.  Good luck with Hemo, but I hate to see you give up so soon.

[del]

Sorry pd didn't work out.  I knew you were looking forward to the freedom.  It's too bad that your center doesn't offer home hemo - I think every center should.  Pd didn't work for my hubby either .  Better to give it up now than to end up really really sick like hubby did. Hope ypou start to feel better soon. 

[KT0930]

JP, I feel just terrible that you have gone through these problems with PD. Sometimes it seems like dealing with ESRD leaves us all stuck between a rock and a hard place. I'm glad you have not allowed yourself to go so long as to feel ill. Hopefully your call will come and dialysis won't be a consideration for you anymore. 

[Joe Paul]

Thanks everyone, for your well wishes. Might be that I did bail out of PD sooner than what I wanted, but I was worried about the fluid gains, and the fact that the toxins may have been leaking back into my system as well. Although my latest blood test was good, it was before the 500 ml increase, and I just did not want to take any chances. I have to give praise to my PD nurse, she did do her best to get to the bottom of my problems, and had plans to figure out a plan of attack. But with the low clearance, and the fluid gains, it was me who decided to go back to hemo, I thought it was best to try and stay as healthy as possible, with the ultimate goal of transplant in my sights. If I was not eligible for a transplant, I would have gladly pursued every option available to avoid going back in center for hemo. I hope this helps explain my decision, I am not knocking PD, or my health professionals, this was purely my own thinking.

[petey]

Marvin, too, made the decision to give up on PD.  While it does work for some, it didn't work for him.  Marvin's problems were with the catheters.  He had two.  The first was kinked and never worked right (fluid in okay, but NOTHING would come back out).  He had a procedure to straighten the cath, but it was painful and, in the end, futile.  We continued with the training, though, and were prepared to try again.  After the placement of the second Tenckhoff cath, Marvin got peritonitis (about four weeks later).  That was enough for him.  After two weeks in hospital and the second cath removed (and loads of antibiotics), the neph asked if we were "ready" to try again.  "No," Marvin said, "I think that's the end of that!"  He went back to in-center hemo (this was years and years ago -- around 1997).  Hemo worked for him, and now that he's on home hemo, we think we've found the modality that best suits him.

I think, like Marvin, JP can say he tried it.

We had great PD training nurses, too.  And, we can certainly see how PD has advantages over hemo (no needles, at home, more freedom, etc.).  I'm glad it's an option, and I'm also glad Marvin tried it. 

[David13]

I am so sorry that PD did not work for you.  As many have stated, PD is not for everyone (just as hemo is not for everyone).  It is good to have options, and you can at least know that you tried it.  Hopefully you will get that call and won't have to worry about dialysis one day soon.