Wow, PD beats you up hard!

[austinsoul2011]

Hi all,

Thanks to everyone for their support, it's so great knowing others are familiar with the crazy biological/psychological changes going on with PD patients like my father.

It seems for every little tweak or change in lifestyle, his PD prescription or diet, there are at times ugly consequences one must deal with.  For instance, my dad has been feeling absolutely terrible since he's started PD (in spite of the wonderful and supportive nurses that care for him at the nearby clinic).  First it was the stomach cramps and pains (not drain pain), then it was the bloating discomfort from the cycler and manual exchanges, and for the past 2 weeks it's been the shortness of breath, lethargy, lack of energy, dizziness, nausea, insommnia and random itching (even with phoslo) that has made his life a living nightmare.  For every temporary solution to the moment's ailment, there's always something else that comes up.  Much of which I'm sure is familiar to most of y'all. 

Lately it's been this horrible lack of energy and interest in doing anything save sleeping on the couch.  He has zero energy and inclination to move.  I've been told it's due to low iron, low phosphorus, low hemoglobin and/or the combination of all three.  The recent change in PD prescription has him dehydrated and exhausted now, with the cycler doing 7 exchanges and no fill, instead of the usual  4 exchanges.  He can't tolerate carrying a last fill of 1500 mL for a few hours after the cycler, and he feels terrible going dry (even with something small like 300 mL) in his peritoneum. 

And now, of all things, he says he feels the drains and fills from the cycler very acutely -- especially the drains. 

Is this all just going to continually get worse than this?  Breaks my heart to see him going through all these problems and getting weaker by the day -- as if he were starting to waste and fade away.  God bless his skilled nurses, who do their best to help him out with the complications that keep coming up.  Almost feels like it'll take forever to get to a point where we'll have done all the tweaks, addressed all the little pitfalls, developed the perfect prescription and finally come to some balanced state where my dad's free of discomfort and pain, and finally reaping the benefits of convenient home dialysis.  This first month of measuring things out, of fine-tuning and adjustments, is really beating him up. 

We have learned a lot, though.  We've found out that he's a high transporter, and that long day-carry dwells don't really benefit him as he absorbs  most of the fill by the evening.  It was a scary time when he gained almost 8 kg of fluid in just 1 week!  We got that removed in 2-3 nights with the reds and big UFs, but it sure knocked him out pretty hard.  Hope we don't have to go with those 4.25% bags again anytime soon.  But each new lesson takes a big toll on my dad.  I'm sure most here know exactly what that's like.

So frustrating, isn't it?  Sigh...

[lmunchkin]

Steve, so sorry your Dad is having these problems!  PD is a finnaky modality.  When you set it up to D, you can't make changes in solutions.  You pretty much have to go with what you got.  I don't have answers for you, but know that we understand exactly how you feel towards your father!

If he were doing Home Hemo, he could make the changes to machine in accordance to how he is feeling at that time!  You can't very well do that with PD!  Sorry Steve!

God Bless and thinking of you and your Dad,
lmunchkin
 

[Willis]

I'm on CCPD with a Baxter cycler and approaching my one year anniversary. The first month or so I felt SO much better because I was in pretty sad shape by the time I got my cath and started PD. Then when I started getting EPO shots for the first time everything went up and down wildly as it took time to figure out what drug levels to use, how much dialysis and which solutions, etc. Around Christmas last year my phosphorus and calcium went out of control and I was an absolute wreck with itching that cannot be adequately described, insomnia, dehydration, and low blood pressure. And I was still working full-time. (Though my boss has told me since that I was pretty much a zombie for 2 months.)

With help form the PD nurse and my nephrologist I've managed to reach a decent state of equilibrium. I'm not 100% but at least the major ups and downs have stopped for the time being. It's so important to watch one's diet and keep the potassium, phosphorus and albumin (protein) under control. If I could have a higher hemoglobin I think that would help, but when first on EPO my HgB was way up then they would withdraw the EPO and it would go way down. That see-saw is not good...a lower but stable level for HgB is better even if it leaves me a little more tired all the time.

I also believe that adequate exercise is an absolute necessity. In fact, I feel worse when I miss my exercise. Long before going on dialysis I played/practiced competitive table tennis 10-12 hours per week. When I started to get real sick and many times after going on dialysis I definitely DID NOT feel like playing (believe it or not but table tennis is extremely physically demanding at the level I play at). Except when I was just too sick, I've forced myself to keep at it 3 times per week. My physical reactions and stamina are certainly at a lower level now, but I firmly believe that ANY exercise will help. I think "playing a game" is easier to stick to than "exercising" so tennis, table tennis, swimming, speedskating, softball or anything that is reasonably demanding and competitive--yet fun--will help fight off those pesky reasons to say "not today." Believe me that I know it's easier sometimes to stay home and watch TV!

 

[Annig83]

When he is draining is he sitting?  Standing?  Laying down?  Sometimes I get drain pain and just switching positions helps a lot... however, before I hit equlibrium as Willis has spoken about, I was getting horrible drain pain that would wake me up (it was always the last drain).  I asked my Neph. to switch me to "Tidal" setting. I don't have the pain at all anymore.  Also, the more he sits and doesn't move the more it can cause the cath. to sit in the same spot, and it could be settled right near a nerve.... which could also mean he may need a surgery to move it a bit and give him some relief? 

It also sounds to me, like your Dad may be "fluid overloaded". 

With shortness of breath sometimes it's from too much fluid.  Is he fluid restricted?  Are his ankles swollen?  Here is a website that gives some problems with being on PD and how to fix some of them.
http://www.renalinfo.com/uk/treatment/end_stage_kidney_failure/peritoneal_dialysis/possible_problems_with_peritoneal_dialysis.html

All his other symptoms that you've described can be from the poor iron content and other issues prevailing him... however, obviously opposite of the fluid overloading is dehydration.  Is he drinking or eating anything at all?  It's totally a balancing act.  Sometimes I'll LOOK at a piece of pizza I can't have and I swell up from the sodium content   
 
Also, how many days a week is he dialyzing? 

I'm sorry that he feels so badly, and I hope things get better soon!!!

[Atooraya]

Look it sounds like he needs some Iron supplement and a shot of Epogen.

[amanda100wilson]

I agree that he sounds as if he needs iron and epo.  I also suspect that as a high transporter he should be prescribed Extraneal, a long dwell PD fluid that draws off fluid slowly and is used as a day dwell.  I suspect that even though he takes phoslo, he still has a lot of phophorous floating around his body.  Extraneal would help this as the fluid would stay there for a long time and have sufficient dwell length that it would be able to pull off this difficult to remove large molecule.  I am not sure which clinic that your father attends.  If it is Davita, they are very reluctant to prescribe Extraneal as it is expensive and it cuts into thei profit margins.  They try to prescribe it only to diabetics, but it is indicated for all PD patients.  We had to threaten their CEO with legal action before they would allow it to be prescribed to me, even though I had already been prescribed it before we moved. 

PD works well for a lot of people, but not everyone.  Would home haemodialysis be an option for your father.  It is much 'kinder' on the body than regular home haemo.  Most clinics require that a partner is trained and present  for someone to select this modality.

[Willis]

I also suspect that as a high transporter he should be prescribed Extraneal, a long dwell PD fluid that draws off fluid slowly and is used as a day dwell.  I suspect that even though he takes phoslo, he still has a lot of phophorous floating around his body.  Extraneal would help this as the fluid would stay there for a long time and have sufficient dwell length that it would be able to pull off this difficult to remove large molecule.  I am not sure which clinic that your father attends.  If it is Davita, they are very reluctant to prescribe Extraneal as it is expensive and it cuts into thei profit margins.  They try to prescribe it only to diabetics, but it is indicated for all PD patients.  We had to threaten their CEO with legal action before they would allow it to be prescribed to me, even though I had already been prescribed it before we moved.

I am also prescribed a day dwell and I usually absorb about 40-60% of it based on my nightly initial drain. I asked my neph about using Extraneal and it was like I had stuck her with a hot poker. I guessed too that it was an expense issue since any extra expense comes right off the top due to Medicare's new "bundle" payment system. In my case the extra fluid doesn't seem to be an issue as I get a good UF most nights and haven't had any swelling from fluid retention. (If anything, I'm more prone to dehydration.) Thus I didn't push the issue...

 

[austinsoul2011]

Thanks for all the supportive replies.  We're also grateful for the incredible clinic nurses, on-calls and nutritionist who keep checking on my dad each day.  If it wasn't for their encouragement, I'm sure my dad would give up on PD and opt for in-clinic dialysis again.

It's just so depressing and frustrating over the past week how my dad's been in this blue funk, what with the ache-in-bones, weakness, shortness-of-breath, dizziness, and an overall feeling of what he calls "something not right."  It's near impossible to ask him to get up off the couch to do any kind of exercise, cuz he doesn't have the energy to even do that.  I'm guessing the little exercise he does get is from his hobbling to the kitchen to make his tea or trips to the restroom -- after which he is always panting hard and out-of-breath. 

He drains all right (as I encourage him to sit up and wait for the drains to complete), but at 8 cycler exchanges per night, he finds it incredibly disruptive and tiresome (since he feels each drain and fill, and the bloat from the big 2L dwells too).  And it doesn't help that his concerned son (me) is always hovering over him at all hours of the night, encouraging him to move around each time he feels pain from the catheter.  I'm amazed he hasn't punched me in the nose for being such a nag, heh. 

It's interesting that my dad's a high transporter; the PET results indicate that his Kt/V is 3.6, so I'm guessing that puts him on the high end.  And it's taking him a while to adjust to this transition from 4 exchanges to 8 exchanges per night, as he can't sleep through the cycles uninterrupted. 

Thank goodness we're limiting his day carry dwells, cuz he absorbs diasylate like a sponge. One morning we had him on a 1.5L carry dwell and he completely absorbed it all by late afternoon.  Wow...

His labs came back (taken a few days ago), and you guys were right on the money; low iron and low hemoglobin.  I've administered his epo shot already (much to his distaste), and he'll get his iron dose when he next visits the clinic.  I've never asked about this Extraneal product; I might inquire about it next time.

I just want my dad back.  He hasn't been himself and he's been in such a foul mood at times (which is understandable).  He's constantly dehydrated even though his UFs are not big values, and we've been encouraging him to drink a lot and eat protein and iron rich foods.  I have such admiration for y'all here who have survived and continue to persevere with this horrible disease.  I too have kidney failure (PKD) and this experience will help prepare me when I need to begin my own treatment.

[tbarrett2533]

I am sorry that your dad is having such a hard tough time with PD  my heart goes out to him as I know what he is going through.


I am on CAPD and will be on it for one year in July.  despite small setbacks and working out small kinks, I feel like if I have to have kidney failure then I am going to choose CAPD as my treatment option, now I am coming from 8 months of in-center hemo which to put lightly for me was like a slow torture that if I had to choose between that or nothing I would choose option B and not even think twice about it, my point is this........... every person reacts diferently to every treatment option out there, some people love CAPD, some people love CCPD some people like and can tolerate Hemo (who they are god bless them, but that sure is not me  ) anyway maybe if after speaking to your dads team and getting no where maybe PD is just not for him and then you need to explore other treatment options................

I hope that everything works out for him!!! 

I will keep your dad in my thoughts and prayers 

[amanda100wilson]

Seven exchanges sounds an awful lot.  I am wondering if the salutes have enough time to move across the peritoneum into the dialysis fluid and in effect he is being under dialyzed.  Just a thought.  If his membrane is that fast that they need to do seven, maybe PD is not the best modality for him.

[billybags]

I also thought that 7 or 8 exchanges a night seems an awful lot. How many hours does he do? My husband does 5 exchanges in 7 hours and finishes off with an 2000 extraneal for the day.

[austinsoul2011]

tbarrett: Thank you for your kind words!  It's been over 2 months now and after night-by-night close analysis (w/ only 2-3 hrs a sleep per night!), I think I'm getting a better gauge on what works for my dad.  He's still exhausted and frustrated in the mornings, but it's not as bad as it used to be.  Slowly but surely...

amanda and billy: you guys are right!  7-8 exchanges are pretty heavy on him, but my dad's a crazy high transporter.  His Kt/V is approx. 3.75 and I've found the most efficient dwell times (in terms of getting good UFs) are between 40-45 mins.  And there's a few times when a dwell time of only 20 mins with 1600mL@2.5% will pull out a 300mL UF!  Here's the catch though.  He's also a crazy absorber, so if the dwells are 2hrs+ , he absorbs at least 50% if not more of the dialysate. 

I'm guessing the rule of thumb with CCPD is that a minimum of 8 hrs at least is required for good dialysis, and so that translates to 8-9 exchanges...