Help...frustration is taking over

[Scarlet]

I have not been on for quite a while, lots has happened since last post.  I started PD in September....or should I say we started Turing in Sept!  Due to a previous bought of colon cancer, it was decided that they would use a full surgical procedure to put the PD catheter in.  That happened on Sept 9th...we waited the 4 weeks of healing and then started twin-bags.  Within he first month I blew a leak at the exit site....and then another.......and then ANOTHER!!!   So this takes me to Jan.  the doctors decide that I should try the cycle at night and stay empty during the day.  So we started that .....now due to previous cancer, I am a bit "short" in the intestines..and this makes me tend to be constipated, little did I know this was a pd death sentence. So now we start the laxatives and that was really fun, it would appear that my body will do all or nothing.  So now I must take a boat load of laxatives once a week and spend the next entire day in the loo or my catheter moves up and stops working....
Half way into Jan I start feeling really crappy..turns out I now have peritonitis, oh ya and an exit site infection.  Boat load of antibiotics later and peritonitis is gone but STILL have exit infection.  With all of this on going I have been baned from the shower. I am the queen of the bird bath! 
I am tired, already.  My husband has had to move into the guest room to sleep due to the amount of alarms I get each night on the cycle, as I am still having issues draining...even on poo free days?? I think I am about to set a clinic record for the longest u successfully treated exit infection.  I don't even remember the last time I had sex....my husband should get an award, but I miss out intimate life too. The doctors do not seem to be worried about the infection at all...but they are not living with it. 
Is this what my life is going to be??

[boswife]

Makes me want to cry for you    Same 'type' of boat were floating right now... Bout ready to blow up (if that makes ya feel any less lonley

      )  So sorry,,, this stuff sucks!!  and........ missed ya, hoping for better for you soon.. Im ready for some upswinging here!!!!!!!!!!   

[cassandra]

So so sorry to hear that. What laxatives are you on? Have you already tried Lactilose? Which is way regular.

Stay strong, lots of love Cas

[Scarlet]

I know that I can not be the only person going through this...that's why I came here.  You folks REALLY do understand how it feels!  As for the laxitaves I did try the lactulose, but I have a hard time keeping it down...now we are just using Bisacodyl 5mg pills.  They are really small, which is great, but they can be a pain.  I started with the doctors recommendation and took one full pill each night, and 24hours later I found myself in the loo with the worst un controllable case of the runs I had ever had.  So then we decided to try a half a pill each night...nothing for the first two days then back to the runs.  Ok so not to be out done, we thought maybe a half pill every other day...no movement at all.  With each of these bathroom trips I would end up feeling washed out, tired, and with a butt like a fracking baboon!!!! With all of these tried, within two days after I would be back to not draining, only to see on an X-ray that my catheter is stuck up under my right boob again.  So now once a week I take two full pills at night and then spend the next afternoon and night pooing my brains out.  We also found out that it really does not matter what time of day I take these pills, they never kick in till dinner time the following day!  No matter when I take the, the little bastards hang on until dinner and bed time before kicking me in the butt(so to speak)

[cassandra]

Maybe it is not a nice thing to say, but this sounds like .... not nice at all. Have you been on hemo before?

[lmunchkin]

Oh Scarlet, no dear, you are not the only one to go through this.  My J did the whole time he was on PD.  He took a ton of laxatives over the years and PROTEIN, cheeeez, I could never give him enough.  He was sick of eating eggs, meat, whey powder ect... and yet, still never got enough.  It was crazy at times!

We liked doing PD because we were at home, but after 3 bouts of Peritonitis, the 3rd one ended his PD.  It was pseudomonas peritonitis, thus being told he could no longer do it!!  They put a perm cath in his chest and he went In-Center for awhile.  Now we are doing Hemo D at home with NxStage.  I personally feel that he has done much better with hemo than PD.  But PD is the more gentler dialysis, and some like it better than hemo.

You may end up on hemo, if this infection doesnt clear up soon.  You can't be getting good dialysis with this going on, and to me personally, that concerns me with your health.  Please, get the dialysis that you need, ok?  If it has to be Hemo, then do it.  You have to take care of yourself, Scarlet!

Love the name by the way!!!!
God Bless,
lmunchkin

[amanda100wilson]

There comes a time, when you have to accept that someting isn't working for you, and have you considered if that time may be now?  I reluctantly made that decision nearly two years ago when I decided that I needed to do NxStage instead of PD.  although in my case, I had successfully done PD for a good few years, I finally had to concede that it was no longer working for me.  Is there any way that you could do home HD?  It was not until I switched to NxStage, that I realised quite how ill I had felt by the time that I stopped dong PD. 

[Scarlet]

The idea of hemo scares the bejebbies out of me.  My mom lasted 8 years and then signed herself off due to lack of quality of life, she was 62.  My mom was the strongest person I have ever known, and to think that she would voluntarily choose to die rather then face any more hemo makes me want to pass out.

The plan was to stay on PD as long as possible and then, if no kidney was found, I would switch to hemo.  I have a unbelievable and stupid terror of needles......so chemo and now dialysis feels like someone's sick joke!!!

To be completely honest, I am terrified right now.  I don't know anyone in person who is on hemo and is ok.  I grew up watching hemo seeming suck the very life out of my Grandfather and and then my mom.   How do I choose to move to hemo, when all I know of it is a slow death??     

[lmunchkin]

Absolutely, Scarlet, this stuff is terrifing. I don't have this disease and Im terrified for my husband who has.  I love him so much, but I also know, that he will pass without Dialysis.  He has wanted to give it up for quite sometime now because he literally has no quality of life.  He will never be able to do the things he use to do, borrowing a Miracle from God, it is not going to happen.

I on the other hand, am selfish!  I want him here with me.   I do not want to lose him.  But I really have to say, that I can understand he doesnt want to go on living tied to a machine. He is not afraid of death per sa, but is afraid of leaving loved ones behind!  He was very close to stopping D. when they started amputating limbs.  It was so hard to keep him up threw all this, but he came through fine and really has adabted as well as he could with it.

I guess Scarlet, what Im trying to say, is yes, its terrifying, no doubt, but it is a reality that all are faced with. Kidneys are so vital!  You have to have them to go on living. Thank God for Dialysis, or otherwise, many would die.

It is a tough situation alll of you face day in and day out, and I don't know what to do but pray for you all.  That is really all anyone can do!

Sorry Scarlet, I have no magic wand!  I wish I did!
lmunchkin
 

[Scarlet]

Thanks lmunchkin.  I do admit that having polycystic kidneys means that there is generally nothing else wrong with me.  Compared to some in our clinic I am the very picture of health, even with all my issues.  I do wish that our province would switch to an option out policy when it came to organ transplants.  The amount of ppl that take their organs to the grave really ticks me off.  There is very little reason for any of us to die on dialysis.

[lmunchkin]

I know this is hard for you Scarlet! This Crap is devasting to say the least.  My husband is a very good man, and he certainly did not deserve what has happened to him, but it has, and he has to move on with it.  Ill never forget asking his Neph, "How long did she think he could live on D"?  Her reply, and I will never forget this, she was not worried about the dialysis, she was more concerned of something other would take him, ie heart attack, stroke ect.... That is when reality hit.  I understood completely at that time, just how vital these kidneys were.

I have always thought and said, I wish I had paid more attention in school, rather than just scrape by on my shirt tails. I always knew that I could have made better grades but just was such a rebel, that I deliberately and lazily made it through.  I never studied Biology, but had I, I would have known more about anatomy when the time came, than be forced to learn the hard way.

Yes, it is all so hard to take in and watch from my perspective.  I sit and watch my husband struggle to get up cause he gains a little fluid and his prosthetic doesnt fit.  If it don't fit, he can't stand on his own.  Now Im not complaining, and please don't think Iam.  We are so Blessed by God!  We have had a great time together and hope to have more time.  He, inspite of his problems, does take things in stride, and I love that about him.  It reminds me of the reasons I fell in love with him.  He is so giving, loving and very repectful of me.  In his shy quite way, he is so strong! He is my Love and I will do whatever it takes to help him. Do I get frustrated? You bet, but bottom line is neither of us wanted this, but it happened, so we must live with it!  Its not the end of the World!

Don't let this disease beat you Scarlet.  You hang tough Dear and meet it head on.  I will be thinking & Praying for you.  It is not easy whether you are Pre Or on Dialysis.  It is so very hard for you all!

God Bless,
lmunchkin

[Gerald Lively]

Scarlet:

Listen Scarlet, although I have not used this PD system, I did Hemo, I meet the minimum qualifications to write this hopefully helpful post. You see, I haven’t had sex since 1994.  Come on now, that ain’t funny!!!  They took my roots out, said Oops and that was that.  You’re making me grin.

Almost forgot, I had a partial kidney failure too.  It was bad enough that I lived with hallucinations for a week or more.  I thought for a time I was in a Jewish prisoner of War Camp, that the nurses were all hookers (I didn’t get any), and some mean old bastard was pounding a wooden stake into my chest.  That last out turned out to be my chest catather.  Really!  Today I went in for Chemotherapy and one of the nurses I thought was a hooker, did my chemo.  A bit embarrassing.  I rendered my meek apology at which she laughed.  Women.

Ah yes, colon blasters.  My wife administers something she mixes with Metamucile everyday mixed with MiraMax.  Everyday.  It works here, will give you the smoothy grooveys.  Shot from a gun.  Splish splash. 

Diarrhea alternating with constipation – try the MiraMax and watch your water intake.  Constipation can be helped with water and slickems, MiraMax and Metamucle mixed together.  Comes with my doctors approval cause it works.  Diarrha robs the body of water placing it all inside the colon.  Constipation is the opposite.  Barring a drug reaction or some food allergy, this might be worth a try.

And, by golly, when I went in to see my GP 14 months ago. His x-ray showed my colon completely full and he told me I “was full of crap”.  The above was the remedy.  However, once that was cleared up, cancer was revealed and shortly after – kidney failure and all those glorious hookers.

If you are using a medical procedure, better yet if “I” was using a medical procedure that consistently gave me serious infections, I would look for options.  If that damn PD is an issue, look at Hemo/dialysis.  You can’t quit.  You can monitor food and water intake, and you can try other methods if PD doesn’t work. 

Become an expert on nutrition, drink quality water (for the patient) and be willing to adjust if something doesn’t work.  Get that nutrition report card and make constant adjustments to stay in the normal range.  Study the blood work.  Ask questions.

And don’t take no for an answer.  That counts most.

gerald

[austinsoul2011]

Scarlet:

Almost forgot, I had a partial kidney failure too.  It was bad enough that I lived with hallucinations for a week or more.

Hi Gerald,

Is dementia common with kidney failure?  My father is currently on PD and I'm thinking it might not be sufficient for removing all the toxins out of his blood, because he's continually falling into bouts of confusion and dementia.  There are times he'll revert back to memories of his younger years and get bitter and angry about incidents long ago, then take it out on my mother and me.  As if the events occurred not too long ago.  I try to calm him down and ease his stress but it's so difficult sometimes -- and I'm wondering if it's cuz of buildup of junk in his blood.  Perhaps PD isn't working fast enough?  Though it's only been his first week... 

[MaryD]

Austin

When I started PD, within 4 or 5 days I felt remarkably clear headed after a few years of confusion, foggy thinking and general brain drain.  If your dad is in his first week he might still be coming good.  My fingers are crossed.

[Gerald Lively]

I can only talk about my own experiences.  Having said that, everyone has a different experience, however slight.  I do not know anything about Dementia.  I am having some short term forgetfulness but I am 73 going on 30, so some of this is expected.

For Scarlet:

I shower as often as I want.  I do have a chest catheter and I was told not to shower.  What we do is patch over the catheter with these six inch clear plastic bandages.  We use three at a time.  After the shower we take them off and wash the area with 90% and put the cotton patch on with a single piece of tape.  I don’t know why you couldn’t do that with PD.

gerald

[Joe]

Scarlet, I can understand you being banned from he shower while you are tending the exit site infection. But once that's cleared up, you should be good to go. I shower every day with my Catheter, and don't really do anything special with it. I just tuck it into my PD belt and go on in. When I get out, I do my daily exit site cleaning and dry it thoroughly. Hope everything comes back to normal soon!

[lmunchkin]

Yea Joe, my husband took showers some while on PD and cleaned the site after a shower, but Scarlet is Infected so they normally do not want her to shower. She can bathe with a wash cloth but not on the site. Some water is not good and at times can be harmful to the catheter (in belly).  No I would not suggest showering while it is infected.

GL, I love your colorful way of expressing yourself.  And I totally agree, she should do Hemo if PD is not working for her.

God Bless,
lmunchkin
 

[KarenInWA]

I am not even near being an expert on all things D, I was on in-center hemo for 7 months. But, honestly, if I was going through all that you're going through, Scarlet, I would throw in the towel and be done with PD forever!  I was never interested in starting it, because I didn't like the idea of a tube hanging out of my stomach, and I also didn't want D to consume my life like it appears to do on PD (there was no way I could stand being hooked up to a machine for no less than 8 hrs a day, every day. I would have literally gone nuts!). You can start HD with a chest cath, which is an annoying contraption, but it does not use needles. Do you have a fistula? Are you on the list for a transplant?  If you are, HD may be the best option for you, because it sounds like PD is giving you too many issues which may make you ineligible for transplant should a kidney become available for you. Also, bear in mind that it is not HD itself that makes a person feel all sick, it is the lack of having enough that does. I did okay on in-center HD. I still worked FT, still went out and enjoyed going to concerts, live theater, movies, did the occasional day trip, things like that. I didn't let my being on D win over my living my life. I attacked it with that attitude, and I won. Now I have a transplant, and so far, I have healed up pretty good! You can do home hemo using NxStage and either do short daily D or nocturnal D. You dont have to do it for 8 or more hours when you do nocturnal, and you also don't have to do it 7 days a week. I was going to look into it if my transplant didn't go through (I had a live donor).

KarenInWA

[Desert Dancer]

I don't know anyone in person who is on hemo and is ok.  I grew up watching hemo seeming suck the very life out of my Grandfather and and then my mom.   How do I choose to move to hemo, when all I know of it is a slow death??   

Scarlet, you don't know me personally but I can ASSURE you hemo is not just 'a slow death'. It is not dialysis itself that causes the quality of life issues, it is not getting ENOUGH dialysis. I do nocturnal home hemo, I feel great and my life is perfectly normal: diet, activity... everything. No one would ever guess I was on dialysis; even my own clinic staff shake their heads every month and say I don't look like I belong there. I hope to be able to do nocturnal home hemo for the rest of my life. I feel like I've got it made.

I know the only experiences you have of hemo are those of your grandfather and mom; they sound like they were pretty awful and I'm so sorry they had to go through what they did. But please don't believe it HAS to be that way. It doesn't. You may have a little more to overcome (fear of needles) if you do choose to do hemo, but it can be done and done well. There are quite a few people here who can attest to that, I'm just one of many.

(Oh, and FWIW... PD scares the bejeebies out of ME!! I'd never even consider it.  )

[cassandra]

Dear Scarlet, I did 5 yrs PD, and loved it. Had to go to hemo after complications etc. Had sworn to never, ever do that again after the last time I did that in the 80's. But its much better now, no comparison. I'm still doing the 'too short in-center' D, but hope to go Nxstage-way before the end of the year, as NW-England is mighty slow on the uptake. I don't know the situation in Canada though, I'm on D for 14+ yrs now, and like DD, I look great (okay, I look okay), and can do a lot of normal things, normal people do.

lots of love Cas

[bleija]

As a person who did Pd very successfully for 2 full years, i was devastated whe4n i had to go on hemo... then i spent months trying to get fixed to where i could get back on PD again. I know right now it seems difficult, but i see no comparison to the the lifestyle of hemo and PD. I think everyone has to find the modality that works for them. I know hemo drains me and wipes me out so bad that i cant function. I think its bc my dry weight fluxuates too much, with or w/o fluid being factored in. and when i was on hemo, i would barely eat, givin the choices tha i could eat, and everything taste3d disgusting. I love the freedoms i have with PD, with diet and schedule. I wouldnt throw in the towel just yet.... pm ur issues and i may be able to help. I had almost every problem u could thinki of last year, and love to give soem insight