I would really appreciate any feedback from those who are on or have been on PD.
My 76 year old dad just started PD this past week. The nephro ordered 1 manual exchange nightly with purple bag (extraneal) but after starting this my dad’s BP has skyrocketed to over 190-210 systolic. His baseline BP before starting dialysis was around 110-120, he was producing normal urine (now significantly decreased since starting PD) and had a GFR around 10-11 (not sure what it is now as they oddly didn’t check it on the labs done when starting PD).
I’ve been asking the dialysis nurse what can be causing this and he doesn’t know nor does the Dr who has a cookie cutter approach it seems . I asked if we can adjust the amount of solution he’s receiving (currently at 1000ml) and he said the Dr said to try the 1.5% (yellow bag) instead, so we did and again he went into an hypertensive emergency with same high BP readings as the purple. Sadly dad’s been visibly declining since starting the PD, not communicating much and feels so lethargic… he has underlying history of heart failure so I can only imagine what all these elevated BP’s are doing to his heart and residual kidney function so it’s extremely worrisome.
If anyone has had experience with this we would highly appreciate your shared thoughts!
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Marbella17
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Hi Marbella 17. Your dad has a complex medical history. We can't diagnose here - that's for your dad's medical team to do. But we can certainly offer context. Some things that create high blood pressure in dialysis patients is miscalculation of dry weight resulting in retention of fluid, the triggering of the nervous and electrolyte systems on the heart as water is being removed, improper medication dosages, etc. Hopefully, your dad's team will figure out the situation soon. I do know that PD is a very gentle form of dialysis. The purple bag is lowest in strength, followed by the yellow, then the green, and finally the red bag. I like that your dad is being started off on a gentle footing. I'd like to add that eGFR loses importance as a measurement when a person goes on dialysis. eGFR is an estimate regarding how well the kidneys are functioning. When dialysis replaces the kidney functions, other data becomes important - data that measures how well dialysis is performing. Some of these tests are creatinine clearance, Kt/V, electrolyte outcomes, and so on. I've watched my hubby go through kidney collapse, peritoneal dialysis, and now a transplant. Your head is undoubtedly swimming with all kinds of concerns and thoughts. Please continue being proactive in alerting your dad's team and finding answers to problems. That's important. I'd like to add that you're amazing for caring for your dad, not everyone does that. He's a lucky man. If your concerns continue, reach out to us anytime! Sending many hugs your way.
Hello Darlenia, thank you so much for your informative response and sharing your knowledge/experience! Those were very helpful details to raise awareness about. My dad’s nephro/dialysis nurse never actually did any assessments to find out dad’s dry weight, which I see come up a lot as a factor as I reviewed the literature in med journals. It seems that dad‘s physiological response with the elevated blood pressure is very possibly caused by the explanation you gave. Do you happen to have any insight what I can inquire for them to specifically do in order to address/prevent hypervolemia?
I too really liked seeing that they had a gentle footing approach with the one bag of purple, however his systemic response indicates he’s not tolerating some aspect of it, despite the lighter solution. We’re doing everything we can but from what I’m gathering after also consulting with couple Dr and nurse friends today, the nephro’s lack of response or proactive care to the hypertensive emergencies is very concerning, as ideal goal BP for dialysis should be 130-140 range, not 180-210 as it gets to with my dad when we do the dwell. I’m trying not to give up hope but now we have tried both yellow and purple bags both putting him in this state
Moreover, thank you so much for your kind words and best wishes. I’m doing all I can to advocate for him to receive more attentive care and its really heartbreaking to see him decline so much after the very thing that was meant to improve his health. I know you have been through a lot yourself, I hope and pray your husband is doing better now! God bless you for the care that you render, not only to him but others in this community with your thoughtful, caring responses. Sending many positive thoughts your way for continued healing, health & strength!
Good hearing from you again. The simple way I look at it, dry weight is what one should weigh after all urine is eliminated from the body. Sadly, as kidneys break down...more and more waste stays in the body and that displays as edema and so on. A nephrologist generally estimates dry weight on the person's medical history and physical appearance, e.g. swollen ankles, shortness of breathing, fatigue, and so on. Effective dialysis should remove enough water to bring a person close to the dry weight. To determine if enough water has been removed, a person is asked to weigh oneself before dialysis and again following dialysis. My hubby's doctor never really told him what his ideal number should be - they carefully watched his before/after dialysis weights. In your dad's case, his team may be factoring in cardiac performance among other things so things may be handled differently for him. Anyway, in hubby's situation, he was given a very sensitive weight scale to record those before/after weights. Your dad may have been given one too. When not enough water is leaving one's body, then solution strengths and/or dwell times are generally increased. For example, my hubby's nephrologist and nurse routinely checked my hubby's ankles and noticed they were swollen - this was early in his dialysis odyssey. So he told my hubby to use a red bag that evening. It worked like a charm - his edema was gone the next day although it made him cramp a lot. I'd like to caution that this is the way it went with my hubby, I don't know if this would be the situation with your dad - his status is very complex. So I encourage you to stay persistent and keep asking his team for answers. Your dad's blood pressure is indeed way too high. So, when talking to his team, I would refer to his blood pressure again - and follow that up by addressing his dry weight, electrolyte status, medications, his heart condition. (I've noticed going in person and asking open ended questions works best.) I'm crossing my fingers that you get resolution soon. It's exhausting being a caregiver - the one in charge when the patient can't do that. It's love in it's purest form. Your world turns upside down fast. You're a warrior for sure! I truly hope others will hop on this thread to give you their perspectives as well. Please let us know if/when your dad's situation turns around. We all here for you!
Thank you again for sharing the additional information and your experience. Dad had no edema at all before, however now he does, we notice it as soon as we start the dwell there is swelling around his eyes - a quick search I did showed that angioedema can be a side effect of the extraneal (not sure if perhaps it’s a possibility with the other solutions too).
Thank you for the words of encouragement and support. It really means so much when his “team” sadly makes us feel so alone. I’m trying to stay strong but honestly very sad that this accelerated dad’s decline in a matter of days as prior to starting dialysis he was producing normal urine, had normal blood pressure, normal electrolytes… we were just hoping this would assist with weakness and appetite, the only two issues he had and the doctor also said with PD we have to start him early to keep the kidney function, which I know is generally how it’s supposed to be. Still can’t understand why in dad’s case it’s having the opposite effect. I too hope I can report back here with a turn around and positive update. All the best to you fellow warrior!
Like Darlenia said, we can't diagnose here or give medical advice. That said - this sounds a lot like the result of sodium sieving - something to ask the care team about. Usually to resolve the issue a low concentration will work or longer dwell time.
Sodium sieving helps to remove excess sodium from the body during peritoneal dialysis. However, it can also lead to hyponatremia, a condition where the blood sodium level is too low. This is why it is important to monitor sodium levels carefully during peritoneal dialysis.
Sodium sieving in dialysis can sometimes cause high blood pressure. This is because when the body loses sodium, it also loses water. If too much water is lost, the body will try to retain fluid to compensate. This can lead to an increase in blood volume, which can raise blood pressure.
Oh you’re so kind thank you for looking into it, however he has the hypertensive episode start with dialysis even with the non-extraneal 1.5% solution (yellow bag). The nurse had said that the purple bag is not absorbable and therefore has no way to cause fluid overload. Yet he is unable to offer any possible explanations as to what is causing it then.
Hi bumblebee_tuna, thanks so much for your thoughts on this alternative possibility. I’d really like to hear all possible explanations to consider and try to further explore. I hadn’t heard of the sodium sieving. As of now they don’t monitor anything at all closely, including the sodium sadly.
I’m starting to feel like we might need a new care team, wasn’t expecting to have to go through having to do that during this already challenging time of adjusting to the new lifestyle, however it is what it is, we will hopefully figure it out somehow.
hope they figure it out for your dad. I had reverse problem my blood pressure went to low they had me first doing two green bags I’m on the machine and I awful cramps where I couldn’t stand it so they put me on two yellow for awhile and now I’m on one yellow one green at one point I wasn’t getting enough dialysis and I became really sick ended up in hospital . I just stated dialysis in February and my urine output was fine now when it time to do the kt/v test the 24 hour urine I’m lucky if I fill five to 8 oz I ask my pd nurse I drink a lot of water if I’m not peeing it out where does it go she told me my body absorb it it does up in my uf rate she said . It took awhile to get me on track prayers sent to your dad to get him on track .
Thank you for sharing your experience and well wishes! From what I’ve heard that is the more common response/effect to have lowered blood pressure. My dad has awful cramps too during drain but he’s not on the machine. I’ve actually been wondering if there is a benefit to having the cycler versus doing all this manually… They didn’t give us the option of the machine and I’m not sure why - after seeing their borderline negligent response to the scary BP levels, I’m sadly now skeptical of them… The nurses have mentioned during several instances how busy they are so I’m wondering if they were trying to skirt around more training with the cycler or if it is actually easier to have it manual.
I’m so sorry to hear you ended up in the hospital, so glad to hear that after all that they were finally able to figure out a prescription that works for you. That’s interesting how you also went from having normal urine output to such decreased levels… I can’t seem to understand the nurses response to you that you’re absorbing it. This whole process is very complex so it’s a lot to have to figure out, and without a very communicative, informative team I really do rely a lot on research and first hand experiences as being shared by all of you. Did your urine level also get back on track or that hasn’t reversed back to your baseline? Sending prayers and my best to you as well for continued healing, health, and strength!
One of the issues I have with working with my PD team is that everything has to go through the PD nurse first, who will second guess you on what's going on, then from there to the Neph, who with so many patients, rarely gives enough time to one patient so that you feel completely "taken care of". I wish there were a way to have access to other professionals, even another Neph, if your "team" seems to be ignoring an issue like this. But alas the system is set up so that isn't possible unless you completely switch out the entire team, as you have suggested as a possibility. Why not ask your regular doc about this, then see if he might refer you to another specialist who might give you answers if you're PD team is not. When I had severe back pain develop during my manuals training, my PD nurse told me it could not be related to PD. Uh, yes it was. I took myself off PD (against my nurse's wishes) and went to my regular doc who sent me to first my urologist, then to a back surgeon to help me figure out the cause. Luckily, when I started PD using the cycler, the pain did not exhibit itself because I was lying down and the weight of the fluid was distributed over a larger area, not sitting on that back nerve like it was during manual dwells. So don't be afraid to go see another doc, even if not another Neph to help sort this out. You don't have to just sit with your hands tied. Then ask your regular doc to work with the Neph and whoever else he thinks might find a solution. Now only do this if you think that your team is NOT trying to solve the issue. Maybe they're trying, but just haven't come up with an answer yet. For my back pain, my team wasn't even trying, that's why I took a different route. It was the back surgeon who suggested that being on the cycler lying down might solve my problem. And he was right.
Thank you so much for sharing your experience and insight! You went through a lot yourself, sorry to hear about all those troubles you experienced too. Seems like a trend that we’ve all endured quite a bit with our varying scenarios to definitely know we can’t just take what they tell us when it’s not resolving the issue and sit with our hands tied as you perfectly said. So glad you consulted with others and got to a resolution!
We actually did talk with dad‘s general MD too last night just to keep her in the loop with dad’s current condition and was able to request lab order but anytime we talk about anything dialysis related she is checked out bc it’s not her specialty, which I understand but there’s no effort to actually be involved as they don’t ever want to do anything contrary to or different from another doctor you’re under the care of or “the specialist” especially when they say “he’s been a nephro forever.” People generally equate years of being in a field to knowledge or competence of care, sadly all of which I’ve realized are independent of the years… Of course experience offers a lot but if the Dr isn’t very compassionate, hands-on and proactive etc., then it sadly offers very little.
I reached out directly to the nephro after days of trying to go through the dialysis nurse initially who kept saying try yellow bag, which made no sense since I was telling him that was producing same hypertensive emergencies. The dr said we need to alternate between yellow and green bags depending on BP, so next up all we can do is try the one we haven’t yet which is the green bag for 2-3 hour dwells and 2 exchanges per day. I’m just not sure if this have to be done consecutively or different times of day. Hoping for a turnaround and good news update. Thanks again for sharing your insight and feedback, sending lots of positive thoughts!
I understand that your general MD might have issues with conflicting with the Neph, but I'm glad you approached the issue without her anyway just to see what she said. So basically what they are telling you is to experiment around to see if you can find something that works. I hear that a lot in the medical world, so that's not an uncommon practice. You would think that after all those "years" of experience, that less experimenting would be required, but as you say, experience doesn't equal intelligence. Yeah, I hope you get a quick turnaround with good news as well, but it seems odd that this would occur just after starting dialysis. Most folks have their BP lowered by dialysis, not raised, so it will be very interesting to find out what the final story is concerning your dad. I hope there's nothing else at play here. The next step would be a visit to your cardiologis, I would think, if this new round of experimenting doesn't produce desired results. In fact, not sure how long it would take to get an appt. Maybe schedule an appt, then cancel if things level out? Just a thought.
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