Lordy, What a Spooky Summer

[Marilee]

I think the dust may be settling, but really I think that just because I want that to be the case.

We took a vacation (our last in the RV - too hard for hubby now with his energy levels what they are) and he tried to walk down a slope to the lake's edge, but fell on loose rocks bumping his head. Next morning found him throwing up for the first time in decades and mentally confused: a Mild Concussion that seemed to go away in just a few days. Then 10 days later, headache, nausea and mental confusion descended upon him and he was in agony. A CT scan said "no blood on his brain" so the primary care doctor said he had to just ride it out.

Meanwhile, though, the renal folks were noticing lots more edema and wacky blood pressure swings along with those other symptoms, so they added a day-dwell to his prescription and moved to "all green" - going from yellow (1.5%) to green (2.5%). Edema went away, but so did his remaining kidney function so suddenly zero urine output and sweet foods became unappealing to him. And he still felt lousy.

Yesterday, the KT/V showed that his function was even less, so they added another cycle so now it's an 11-hour treatment, but they backed off from all green to a 50/50 mix.

It has been 2 months trying to get a handle on all this, trying to get back to some kind of comfort/energy level. But mostly, it has been all about sleeping and doing dialysis. The nausea, headaches and confusion are abating now - so that's something - but the lost kidney function and the inadequate dialysis have taken their toll.

Hubby is questioning whether this is worth it, whether this is typical and wondering if it really means that the end is near. So it is taking an emotional/spiritual toll as well.

So, I'm wondering: How much PD do y'all do each day?

[Cowdog]

I can't speak of PD times because I'm a Hemo guy and would encourage him to give it a try before throwing in the towel. I'm typing this on my computer at work and the end of Oct will be 10 years on Hemo. PD never appealed to me.

[kickingandscreaming]

I'm really sorry you've both had such trials.  Hopefully, the end of THAT is near.  I've been on PD for nearly 3 years.  Last year I had some hospitalizations and I thick they contributed to a stunning of my kidneys.  This led to a pretty major dry up of my residual function.  It's been coming back, but it still isn't what it used to be.  Because of that, my clearance went down and my PD RX needed to change.  I now go through nearly 15 liters of dialysate for each day's program.  I do one manual treatment (2L) and m cycler goes through 5 full cycles plus a final fill, dwell, drain.  Each fill on the cycler is 2,400ml.  I am a high-average transporter so I can clear on 1 hour 20ish minutes of dwell.

[Marilee]

KickingandScreaming: It sounds like my hubby has finally caught up to you: 15Liters plus 2500ml of Extraneal for the day-long dwell, and the 15Liters are divvied into 5 cycles on the machine. I think the only difference is that you've got the added manual - I reckon that's because your a high-average, whereas he's a medium so his cycles take longer. I'm actually glad to see that someone else has had to move to this much PD and that it has helped you - AND that some of your residual kidney function returned (fingers crossed here for something similar). That's really encouraging.

Cowdog: I actually was expecting the nurses to say something like, "I guess this isn't working - let's try hemo next", and I'm encouraged to hear that you've successfully done hemo for a decade! Wowsers! We had thought that PD would be a simple night-time solution, but so far, it has meant waking up every two hours because of slow draining issues (get up, stop the alarm on the machine, move around, go back to sleep), so the "idea" of PD and the reality of PD have not panned out so well. Hemo may be in our future. Maybe 3 days a week in a chair at the clinic ain't so bad...

Thanks both of you for your responses: I'm so glad to be able to chat about this with y'all.

[kickingandscreaming]

Sometimes, the loss of residual function is a version of AKI (acute kidney injury) and, with luck, can spring back.  I hope that's true for your husband.

[lulu836]

@Marilee  I was wondering what happened to you.  So sorry you are having major problems! 

I am on clinic hemo with a catheter and have been for a little over 3 years.   It's just another day at the office for me since I don't get stuck with a needle.  Hemo comes with its own set of rules on food and drink and with a chest catheter I have to take extra precautions when showering.  Dialysis is a necessary evil but I am glad the procedure exists, other wise I would not be here.  For me, the sudden change from active ourdoorsey person to "your kidneys died which dialysis clinic do you want to go to?" was a real kick in the pants.  I went through most of the grieving steps but I'm over that now.  My dry weight is good and food and fluid consumption are under control so it's all good.

PD is something I have never been willing to mess with.  It is way too "fiddly" for me and I'm not strong enough anymore to carry around big bags of used fluid (nor would I want to do so) ;  In addition, I am a self-proclaimed procrastinator.  I can justify doing absolutely anything later.

You guys stay strong.........everything will work out.   

[Cowdog]

Marilee,
If I could make another suggestion. Even if you husband works out the kinks in the PD there is always chance (God forbid) of an infection. Quite often PD patient have to go on hemo for a while to get some PD issue resolved. If I were him I'd find the best vascular surgeon in the area and have a fistula put in. Trust me, he does not want a catheter. An infection from a catheter is a real bad thing, 1st hand knowledge.
BTW - the needles aren't that bad. About like a bee sting if someone else sticks me. I stick myself and there is no pain when I'm doing the sticking.

[Marilee]

So what exactly IS a fistula? I've seen that term often here, but I really don't understand what it is.

[rcjordan]

A vascular surgeon connects an artery with a large vein to make it 'puff up' for easier needle insertion.  The preferred location is the non-dominant forearm (where they've put mine) but they are often in the upper arm and sometimes a leg.

[lulu836]

Trust me, he does not want a catheter. An infection from a catheter is a real bad thing, 1st hand knowledge.

If I could have just a little break here for catheters.  If that is a person's only option I would hate for them to see that post and opt out of dialysis from fear of the catheter.  At my clinic, only RNs are allowed to treat patients with catheters.  In my short time on dialysis, there has never been an infection in one at all.

[Marilee]

So, a fistula puts a large vein under more blood pressure? It seems to me that my hubby's uncontrollable high blood pressure may steer him away from that option.

Is the catheter pretty much the same as what they install any time you go to the hospital so they can draw blood and/or add medication with only a single needle inserted, or is it a non-needle thing of some kind? Hubby's had a catheter in his tummy now for 15 months and we're really clear on managing cleanliness to avoid infection.

[lulu836]

https://www.azuravascularcare.com/infodialysisaccess/types-of-dialysis-access/

Im about to leave for my treatment.  This is a pretty good explanation of all types of dialysis  If you like, when I get home this afternoon I can PM you with a lot of the research I"ve done on them.

[Paul]

I have very high blood pressure, they actually consider that an advantage for HD. One neph even tried to get me to stop taking my blood pressure pills to make my BP even higher.

WRT the HD catheter: It is a lot bigger than the type you are talking about. There are two pipes, usually going into the chest on the outside, then curling round inside you and going up to your neck (they do sometimes use other locations, but that is the most common). The two ends that come out of your body are wider and slightly longer than a medication catheter.

[Marilee]

@Lulu THANKS for that link: I found the pictures and the descriptions very clear and helpful. Now I see why Cowdog was suggesting we check into it now rather than waiting 'til the last minute: The fistula needs to "mature" before it can be used. I guess you got the catheter because they needed you to start HD immediately, eh?

@Paul, after decades of trying to get his BP under good control, I can't imagine anyone being glad to see high blood pressure! What a surprise!

[lulu836]

My circulatory system is too old to support a fistula or graft.  Long story short:  After 7 seperate surgeries by a jake leg surgeon all done in one 24 hour period he installed a graft which didn't work either.  The next day he put in a catheter and here I am.  To this day I cannot raise either arm above shoulder level and most of the strength is gone.

[PrimeTimer]

Sorry to hear about your rocky summer. Would spook me out too! All the stress from worrying and trying new things and to keep starting over is exhausting. It all takes a toll. Sorry you guys are going thru it.


We did home hemo for about 3 years for my husband. He did 3.50 hours each session. Add the setup time and cleanup and prepping for the next day and it became 6-7 hour job 5-6 nites a week. He stuck his own needles in while I just assisted. I made all the blood line connections for him and set the speeds/numbers on the cycler and then pulled his needles at the end of treatment and held gauze over his needle sites til we were sure he was done bleeding. And then I had to make a batch of dialysis in a machine. Had to do this about every other day. It took the machine approx. 6-7 hours to do but someone needs to be around in case off alarms, leaks, malfunctions, etc. I also handled the inventory and the ordering and being home to meet the delivery man. We did this in a little 750 foot apartment so was a tight squeeze. Living room looked like an infirmary. I didn't care, just wanted hubby to be well and to be comfortable. We would do his dialysis in the living room while watching tv. Did this until I no longer could. Got burnt out. Having Fibromyalgia didn't help. My body decided to rebel and tell me "no more".

So... hubby went back to the center. He goes 3x a week for 5:30am sessions, drives himself, comes home to eat and then goes to work. And...he feels pretty good. His labs looks good and he has energy. Everything we were afraid of happening -hasn't. We only did home hemo because we thought it was better and in many ways, it is. But a person's energy level, home environment, time, partner, lifestyle, confidence and personal interests all play a part in deciding on a modality. We simply decided that in-center dialysis best fit our needs -for the both of us. And for that, we are both happier to spend time together doing other things than dialysis and sleeping. Going to the center has definitely "freed" us from a few things. And hubby has made friends there. Friends he can relate to. And we're both a little less stressed out because we no longer worry about malfunctioning machines or alarms or blood spills. There are pros and cons to doing dialysis at home, whether it be PD or Hemo but each person has to decide these pros and cons for themselves. My husband and I had to let go of our fear of dialysis clinics and letting them take over duties. When you feel that you are giving up some control it leaves you feeling afraid, vulnerable and even a little angry. But so far, nothing too terrible has happened and in fact, trusting relationships with professional staff have been formed. We breath a little easier.

Sorry this has been such a long post but I hope things turn around for you guys and quickly. But if not, don't be afraid to look to another modality for dialysis. Speak up, ask questions, rant or rave. That's how decisions are sometimes made. We are 5 years in and still have crazy days but it does get easier along the way. This is a damned disease. One hell of a challenge to face and live with. But none of us on here have to be alone with it. You're not. Take care. Keep us in the loop if you can and we will keep you in our hearts.

[Marilee]

PrimeTimer, thanks for taking the time to paint your story so vividly. You're right: We're afraid of hemo. We're put off by the idea of cycling blood through a machine. But if PD fails, Hemo clearly needs to be embraced, especially since hubby is not on the transplant waiting list.

Lulu, I'm so sorry that you had to go through such a difficult, abrupt change from 'normal' to hemo-via-catheter. I'd be frightened the whole time, and worried for the future. Thank goodness they had the catheter as a 'backup' to the fistula and graft, and that it worked.

I must say that I am SO GRATEFUL that y'all don't just toss out platitudes like, "hang in there". Hearing your experiences not only gives me perspective, but it also shows that this journey is not a straight line from bad-to-worse.I think what makes it so hard is that when a person feels so darn tired/weak/weary, it's easy to say, "the heck with it, everybody's got to go sometime". The prospect of starting over with another treatment process just seems daunting and the fear that it won't work either saps any energy that's left.

Listening to you here actually boosts the energy to try and that's huge. 

[kickingandscreaming]

This disease sucks.  There's no two ways about it.  We just have to struggle though until such time when it seems easier/better to chuck it.  Or if something external makes that choice for us. You can be going along finally striking a good balance and all of a sudden you find yourself in the hospital, clinging to life.  This is not a disease for sissies.

Because I live alone, and until recently had a beloved dog at home.  She, sadly, died back in June.  Every time I've had some crisis (usually heart related) and had to go into the hospital I was so stressed out about leaving her (she was 16 1/2).  Just recently (last week) I had to spend 5 days in the hospital to deal with a yeast infection that they were afraid would enter an open lesion under my catheter exit site.  They were terrified and said they would have to yank my catheter, treat the infection and put me on Hemo.  I freaked and said 'NO" I will NOT do hemo.  I hate it.  In my gut I felt they were being radical and extreme and I didn't want it.  So instead, I was monitored in hospital and started on a anti-fungal cream and an anti-fungal IV infusion.  During this time I didn't have to stress out about my dog anymore.  Unfortunately, I also didn't have a good canine companion when I got home.  So there are always 2 sides (or more) to everything. 

I know you guys have just been through a big deal.  Along with everything else, be grateful that you have each other and your 2 dogs.

[Marilee]

Holy Cow, KickingandScreaming. On top of everything, a yeast infection!?!? I know what you mean about the two sides with loved ones/dependents. I remember when you lost your pretty girl in June, and I bet it often feels like it was just last week. Good for you, though, sticking to your guns with the docs: I'm so glad they were able to get the infection sorted out without changing your life all around in the process.

Hey, speaking of "open lesion under the exit site", my hubby's exit site was just not quite healing: Not infected, but also not happy - always a bit inflamed and easily developed little lesions. It turns out that he was sensitive to the ointment (Gentamicin) that they were having us apply daily and when they switched to Mupirocin ointment, his skin got comfortable. That took a year to finally get sorted out, so I wanted to post it here in case others are having issue with their exit site.

[Charlie B53]

3 1/2 years on PD and did very well.  Until I must not have been careful enough making my set-up and caused my infection.  Months on dosing my bags but the infection kept returning, my PD Cath had to come out.

A Hemo cath went in and I started going IN-Clinic Hemo.   Surprising to me, even with my needle-phobia, I have found my total time on Hemo to be far far less then doing PD.  I have my evenings and week-ends totally free once again.

I do take a Zanex an hour before treatments, it keeps my blood pressure from going over 200.

And I do NOT look!

Also surprisingly, I have managed to restrict my diet and fluids enough so that my Labs are still nearly the same low numbeers I was making on PD.

And I control my fluids so my average take-off amount is well under two Kilo's.  Usually way less.

I consider myself to be Blessed.  I must be or I would be having far more problems.

[Marilee]

@Charlie, when you were doing PD, how many cycles did you do? We started with about 7 hours a night (3 cycles) and now we're up to 11 hours and 5 cycles plus an all-day dwell with Extraneal. How 'bout you?

[PrimeTimer]

Hope your husband is doing better and some of the stress gone. The unknown or waiting to see what the outcome will be is often the worst stress to feel.

[Charlie B53]

On PD the first year I did 4 2 liter manuals followed by an all night fill of 2 L Ico.

Once on the Cycle at first I used IIRC 3 LL bags but progressed to Three 5 L bags followed by 2 L Ico all day.  # of exchanges during the night was 7 or 8.

Usually connected by 7 p.m. The Cycler would Hold during my last drain.  Tidal, I wouldn't drain completely until I got up vertical, then finished that last drain before the Ico would fill.  So I often didn't get disconnected until about 7 a.m.  Lot of hours connected.  Nurse didn't like it, but I would often cap off between cycles so I could fix dinner, go out in the garage for a cigarette, etc.  The 3 prong line set has longer hoses for more distance/range of movement.  Add a patient extension hose and I could roam half the house.

PD worked very well for me.  I could eat and drink anything as much as I wished.  I lost a LOT of weight as I always felt 'full' so I simply couldln't eat near as much as I did before.  Add to that I virtually stopped eating breads and in two years I'd lost 100 pounds.  I am lighter than I was playingn High School football and 3 years in the Army.

I am tickled!

You can easily say Dialysis has saved my life.

[Marilee]

Good Morning, PrimeTimer! Thanks so much for thinking of us and inquiring. I think the short answer is, "things are improving".

The dialysis prescription was changed again about 2 weeks ago, and another KT/V issued. This time, those numbers came in just above "OK", which is better than last month. 

He still sleeps a LOT, but when he's awake, he's feeling a good bit better: Clearer-headed. Still pretty much bed-ridden because his energy levels are low.

They've started him on iron supplements, and boosted his Aranesp shots to every week (4 micrograms), still trying to improve the anemia, and that seems to be helping. 

He asked the Dr. how long she thinks he has to live ("Is it a month? Or a year?") and she said that this month she's comfortable saying she can see him alive next year, but last month she would not have been comfortable saying that. My goodness, such a roller-coaster.

I'm so glad his brain has cleared: He was having trouble even entering his weight accurately into the machine! I was double-checking all his numbers and his process of setting the machine up. We only lost 2 cartridges and one set of fluid (one confused night where he couldn't get it primed properly so I did the priming that night).

We're still figuring out eating changes: Since he started the all-day dwell, he eats less, and his protein levels are lower. The dietitician ordered some 'renal shakes', but he doesn't like them. So far, scrambled eggs (half of which are egg whites) and fresh-roasted chicken have been life-savers.


Gosh, thanks so much for letting me ramble on!

[Marilee]

Hi Charlie!

It's interesting that, just like you, my hubby is eating far less bread now that he's dwelling all day. He says there's just no room in there! And like you, he's been losing weight: Down 15 pounds so far. He's still got about 10 - 15 extra pounds that he wouldn't miss: I just need to boost his protein without wheat (more chicken and egg white so far).

It sounds to me like your prescription progressed similarly to my hubbys - more and more fluid. The PD nurse said that this is pretty much the way most of the patients are set up. It helps to know that this is the new normal, and not some desperate measure.

Thanks for all those details - that helped.

PS. Hubby migrated from cigarettes to a vape system about 4 years ago: BIG improvement. He takes a puff now and then and finds he needs it less and less, compared to cigarettes, and he had fun experimenting with flavors. I like the fragrance, too (the occasional waft of watermelon versus cigarette smoke is so nice), and I like that he doesn't have to go outside or get agitated because he needed a smoke. He could never quit nicotine, so vaping has really been a major improvement.