I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: lilsis2018 on June 28, 2018, 01:16:41 PM
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Arrgh -- I feel like I can't get ahead. I was working on another response but got several calls from my brother this AM with new issues after his first night on the PD cycler. And, I thought I had a good handle on the board rules, but I found myself unsure whether to add this to my previous post or start a new one? So, I'm starting anew -- please let me know if that's wrong.
I tend to be far too wordy, so I'll start with the questions that have come up after the first treatment. What would cause a negative UF number rather than a positive one & how do we fix it, and what would cause a 2 hour loss of dwell time (no power outage)?
So, everything seemed to go OK overnight for my brother's first session: no problems connecting or disconnecting. He said there were a couple of low flow alarms while he was sleeping, which, based on the little reading I've done, doesn't seem to be completely unexpected, particularly in the beginning. The low flow alarm thing had been covered during training & he addressed them as he'd been taught.
However, when he did whatever you do after disconnecting to enter the numbers on the log sheet, he found his UF was -344. And called me. I told him to call the clinic, they gave him a phone number for the on call PD nurse, he called & left a message, & then called me back. While we were on the phone, she called him. In the course of that conversation, she found that in addition to the negative UF number, he had "lost two hours dwell time."
He's kind of freaking out, but I don't know how much of that is coming from him & this being his first solo treatment and how much (if any) came from the PD nurse.
What the PD nurse said was to increase his treatment time from 8.5 hours to 9 hours to address the "lost dwell time," and to get up & move around some tomorrow morning before disconnecting & then do a manual drain (apparently the machine does that) while still connected. She was also going to notify the HD side of things to have a standby HD slot for him Saturday if needed -- I think that might be why he's worried. She also said it sometimes takes a few days for everything to work right.
Does that sound reasonable? Anything else I should know or have him do or ask about?
Other info that may/may not be helpful . . .
The same thing happened when they did a single machine exchange (not sure what to call) at the clinic on Monday -- less fluid came out than they put in. He said the PD trainer didn't really offer an explanation or comment about it. He thinks his first machine exchange was last week & doesn't recall there being a negative UF number then. So, last night was his third experience with the machine (Baxter HomeChoice).
His weight last night before he connected was 87 kg; it was 87.7 kg this morning after disconnecting.
Throughout training, they did several single (if short -- not sure how long the dwell time was) manual exchanges & always got out more fluid than they put in. He's had no previous abdominal surgeries.
His CCPD treatment was to be 8.5 hours (2 bags) with no daytime dwell. As I said above, the nurse changed that this morning to 9 hours due to the 2 hours lost dwell time last night.
He's pretty discouraged/concerned -- he woke out feeling pretty pleased that everything seemed to go well & then wham. I'm not overly concerned at this point, but I really would like to understand what can cause the negative UF number & the lost dwell time.
TIA,
LilSis
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Dialysis is complicated, it takes time to learn the all the setting. If he screws up enough a HD session will take care of it. Tell him to take a deep breath and trust the nurse will steer him clear of major problems.
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As you figured out already negative UF is not desirable as especially with a weight gain this means that your brother accumulated extra fluid. You do that a few times and he will start feeling uncomfortable with possible breathing issues, at which point in time the water could literally up to his neck. The good news is when he hooks up tonight he hopefully will have a higher positive UF than usual because he will be able to take some of that fluid off again. Once absorbed into your body, it may take a few days for him to get back down to the 87kg, though -344 is not that bad. If I see I had a low drain I usually use the static/manual drain to get rid of what I perceive the extra (I am always carrying fluids, so draining until empty after my final fill is not an option). If his weight keeps increasing despite him being sure that he always fully drains, his prescriptions may need to be modified to address his absorption issues.
As to your original question on the why? Constipation, his position during the drain (upright is best as it works with gravity), the position of the catheter etc. The loss of dwell time I get on days when I am not draining well at all. Example: normally it takes me 13minutes for a 1800ml tidal drain during the night. I recently had the unfortunate "pleasure" of being constipated, it took 2h to drain 1000ml at which point in time the machine refilled me with 2000ml.
Bottom line is, there is no answer for everything. In the beginning there is a lot of trial and error when you figure out how your body specifically is dealing with dialysis. In the meantime, your brother needs to keep and eye in his weight and his blood pressure. Fluid overload will result in a higher blood pressure. For me the most important thing was to know what my cycler could do, i.e. how do I do this manual/static drain, how to trouble shoot alarms. He will get to the point where the machine is beeping yet again, and he looks at it and knows immediately what to do to fix it without having to call Baxter/Fresenius/PD nurse, just give it some time. :)
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Thanks for the reassurance -- there is so much to learn! And, Kansas75, I'm sorry about your constipation episode, but I'm glad you shared it -- it's good info to have & it's a pretty good illustration of how different things can effect PD!
The PD nurse called him back & had him do a manual drain using a bag, and he got more fluid :-) I didn't think to write down the volume, but his weight dropped to 86.4 kg (87 kg pre-PD, 87.4 kg after). So, that's good. But, his BP went up (too much) after that -- no idea what that was about. Hopefully, things will go better tonight, and he'll check the number before disconnecting tomorrow morning so he can move around & do the machine manual drain if needed.
The whole thing is very confusing to me, but I'm cautiously optimistic we'll continue to learn as we go along and get a better feel of things, particularly with the help of you great people!
He has a history of treated hypertension, but since the heart surgery, the bigger problem has been hypotension (not related to dialysis) and low pulse rate. His cardiologist & regular doc have been tweaking his meds for months & at least his BP isn't dropping as low as it was -- it was typical for his BP to be 75/40 with a pulse down in the 40-50 range. Crazy, but I learned to quit freaking out about that :-) He takes his BP several times a day at home, and of course pre- and post-HD at the clinic, and goes to his primary doc once a week. They, too, have learned to quit freaking out about it :-)
I honestly don't have a good feel as to how much fluid retention issues he has -- reportedly, it's not much, but I also know there's a fair amount of art in checking for edema, and I don't think he's particularly good at it, and I'm not sure how good the different clinical staff is at it. On HD, his average fluid removal per session was mostly in the 1 kg range -- fairly regularly, it was less, and once in a while it would be maybe 1.5-2 kg.
And, the whole dry weight is still a confusion to me, but I guess that's a common source of confusion!
Many Thanks for the Help,
LilSis
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Those are not uncommon problems just beginning PD. It will take a little time to get used to the system. The real beauty of PD is that it is easily tailored and adjusted for the individuals needs. The number and volume of bags, number of exchanges, and dwell time can all be adjusted.
Slow drains can be very common. Here again, depending on how full the bowels are it can be more difficult to drain and take far longer than usual. The machine does not 'pause the system timer during drains, but this may also be adjusted as well. The Cycler can be set to 'Tidal' which only drains a % of fluid, then goes onto the next cycle. At the very end of treatment it makes a complete drain. Mine did then 'Pause' unti I woke up and hit the Go button. Once I was vertical, sitting up, I drained completely.
If he continues not to take off enough the Dr may order a full day dwell of Ico solution. This is a difference type of sugar and can remain in up to 12 hours and take off a lot of uF.
Again, give him time to get used to his Cycler.
I am far more concerned about his low BP and heart rate. My Metoprolol lowers my BP and heart rate. Nurses get concerned when I am near 50 beats.
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Does he have RKF (residual kidney function). During my first 4 years my RKF was high enough I always had 1 kilo removed. In the last year I now need to manage my fluid do to 2 angioplasties after a major heart attack. You also should have him track his solid waste output. I just note output if I go a day with limited output I tell the nurse not to panic I am constpated. I up my fiber and usually every thing works out. If it’s not ok for the next session I then move on to using laxatives on my non dialysis days.
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As a comparison, LilSis, my hubby has not had a complete drain on the cycler while lying down. He must sit upright. So, he nearly always has a negative UF in the morning and then he queues up a final drain before unhooking. According to the surgeon who installed the catheter, there's just too much adipose tissue surrounding his guts and that tissue just gets in the way when the machine starts to suction. It's never a problem when he does a manual, gravity-based session and his nephrologist has suggested maybe he should switch to all-manual in order to get a full night's sleep (the machine alarms with "low flow" messages often). But he's hanging in there with the machine because he really prefers to not be full of fluid throughout the day.
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You don't mention what strength of dialysis fluid he used (1.5%. 2.5%). the higher the %, the more UF it pulls out. You also dont mention how he did in his PET (peritoneal efficiency test). If he's a low transporter he will need longer dwells. If he's a faster transporter (as I am) then short dwells (1 hour 15 min, e.g.) are better. Also, the fact that he's diabetic also affects the amount of fluid that comes off. It will get better.
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Lilsis, regarding the blood pressure, that can be a tough one. Mine was very well controlled before starting dialysis. And then my bp kept dropping to the point where I felt woozy, but still higher that what your brother is dealing with. Here we are, half a year later still trying to find the right cocktail. Dialysis changes things and it takes time to figure things out. Make sure your bother knows what his “cut off values” are were medical assistance it required (ER) and then keep tabs on various factors that might directly be influencing things. So, I wouldn’t exclude dialysis as a contributor just yet.
Fluid removal will be different on PD vs hemo. For starters PD happens more often. Also, PD is more encouraging to residual function, so he may start peeing more. Time will tell what his normal should be.