So I've been putting off this post for a while, so i could do a fairly "inclusive" amount of information in one post.
First, I want to report SUCCESS in my PD journey. It's actually working! Whoo hoo!
This has been quite the episode for me. Not sure if I can definite it exactly other than in terms of "relationship" development, which seems to be appropriate for Valentines season. As you all know, i had a very rocky start with PD. I totally flunked manuals last August/Sept because of extreme back pain I experienced during the "dwell" when I would try to go from sitting position to standing. The pressure from the 2000ml of PD fluid really ticked off some nerve in my lower back, so that didn't happen. Then I was on the cycler for a week before stopping to have hernia repair surgery. I then took an extended leave of absence from PD until that healed and until the holidays were totally over. That put me two weeks into January when I first hooked back up to the cycler.
Since then, Amy (how I affectionately reference my Baxter Amia Cycler) and I have been slow to warm up to each other, developing over this last month. The first three weeks were filled with cycler alarms, drain pain, and just plain anxiety on my part (Amy doesn't get anxiety). I tried multiple positions in the first couple of weeks as I endured some fairly significant (though not endurable) drain pain. Lying on my back, my left side, my right side, my stomach all gave different types of drain pain experiences. None caused me to have to stop the drain process, so it was doable, just not pleasant. A lot of times I would already be awake, having waked up because I heard Amy's purring sound (sorta like the purring of an HT printer at work). Sometimes I would be waked up at the initial feeling of drain pain, and toss and turn and distort myself in different positions, shapes in an effort to get it calm down. I would bend my knees, or straighten my legs out, or lift my knees in the air if on my back, or rain my butt up in the air if on my stomach, I tried everything a circus contortionist would do. So those first two weeks were very much an experiment in positioning to relive the drain pain, AND to respond to cycler alarms.
Amy would go off after I had drained about 3/4 of the 2000ml of fluid out and give me a "slow patient flow" message, indicating that there was not enough fluid flowing out of my peritoneal to satisfy her. She's a hungry gal. And most times, all of my tossing and turning would NOT satisfy her. So she would offer up her nagging squawking alarm until I drug myself out of be and basically stood up until I had completed draining. Standing was the only position that would satisfy her and cause her to turn the alarm off. It would take roughly 10 minutes each drain to complete the drain. I also experienced a great reduction in drain pain while standing.
Well after a few nights of Alarms and drain pain, I knew I had to find something to eliminate the two issues. After the second week, I noticed that when I lay on my left side (my catheter exists my right side), I had a much reduced level of drain pain that other positions. AND I found that I was actually able to sleep through a couple of drains without Amy sounding an alarm. So each night, I assume the anxiety of anticipation of the pain or the alarm, would allow me to wake up before each drain, or just as the machine hum would start, and I would flip over on my left side with my knees barely bent, legs pretty much extended, and in that position I noticed a significant reduction in drain pain, and no alarming response from Amy.
So going into the fourth week last week, I was able, on Wednesday night, to experience all four drains without drain pain (well almost none) and no alarms from Amy. I was thrilled. I felt like I had conquered mt Everest! Now that was short lived as on Thursday night, Friday and Saturday, I did have one or two slow flow alarms because I was in the wrong position when I awoke to the alarm, and had to stand and salute Amy until she turns the alarm off again, But at least I have found the "sweet spot" for my PD. Now I just have to train myself to be in that position each time a drain starts. Not sure how to do that, but I'll figure it out. I'm just thrilled that I had that one night of no pain and no alarms. I hope to add many additional nights to it in coming days/weeks.
I go in Tuesday (Valentines day) to find out how the labs that they took last week show my dialysis is working. I had to do a 48hour urine collection, and then take a sample from an effluent drain bag and take it in to the clinic. This will let us know if my prescription should be adjusted. Meaning if I need to add time to the 8 hours I'm dialyzing each night, or use a different strength solution, or add more exchanges. I'll update this post once I get those labs.
So, PD is all about relationship building I'm finding out. I mean how else would you describe being intimately physically connected to a being (Amy is a being, I have no doubt about it with her different responses to seemingly the same input on different nights). There's obviously LOTS of give and take in our relationship (PD fluid), and I have a LOT of conversation with her in the middle of the night when her nagging alarms are going off and I'm hopping around like a toad trying to make her happy and convince her to shut off her alarms And I have to care for her with daily cleaning, software updates, gentle handling, and making sure she has power to eat. And the voice they've given her to "talk" to me is actually quite pleasant, even during the nagging alarms. So overall the experience with her has been challenging (most good relationships are), but we are getting to the point of being able to "grok" each other (That's a Robert Heinland coined word meaning "a concept of self transcendent experience and emergent identification beyond those of many "subject-object" assumptions."
So my relationship with Amy will grow and develop in coming weeks, I'm sure. I'll update our progress occasionally.
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RonZone
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I totally understand! I had a similar experience. I swear I didn’t sleep at night for months flip flopping around! Glad you are getting it all worked out😊
Hahaha Ron 🤣🤣🤣..you do have a way with words!! A great sense of humour can certainly make a difference when dealing with stressful situations. You have got this my friend. Wishing you and Amy a Happy Valentines day from Scotland ❤❤❤
What a great story. I hope the people here pick it up and use it in patient stories. I wish you and Amy all the best. A good night's sleep to me is precious. Happy Valentine's Day.
Oh dear, I hope not, that's just my stupid rambling Thanks for the well wishes. Yeah. Sleep has become a premium commodity. Happy Valentines Day back to you!
Yeah, for real. That song is very appropriate for my situation Great reference! Oh yeah, I'm definitely clamping off the extra drain bag tubing. Amy tells me I have to, so I do what she says She's very insistent.
I had to quit listening the Maria....she drove me Nutz....and forgot that little extra drainage clamp ...paid dearly for it...lol
Does your PD Nurse put you in Tidal Wave Mode.?..I still use that...They have been slowing cutting back my Dialysis...was 8 hours, now 5 hours...They seem to think my kidneys are working better than they think...When I first started my M/tv # was 3.21...my last one was 3.61...hoping to get it reduced enough to get by with one manuel bag a nite and drain in morning
Yeah, I can see me ignoring Amy after a while as well Say it isn't so! Yep, afraid I will definitely do that and will also pay for it I am sure! But that's the nature of long term relationships, right? I'll find out what y kt/v will be tomorrow. Then will go from there. I'm not privy to what the numbers mean at this point, but I'm sure I'll get educated over the next day or so. But that's great that you're able to reduce dialysis. I'm afraid that will not be my case. My PKD ain't gonna get better, it'll get worse over time till my natural kidneys totally crap out. But I'm very excited for you! That's really good. You must be doing something right!
Either that...or they started me on too strong of a prescription to begin with...I imagine that even if I get lowered for now that the increases will come as my kidneys eventually fail...but I will gladly take less for a while...less medicine is always better to me...A k/tv is just kind of a GFR #...tells them how clean your blood is ...for adequate Dialysis you need to be a k/tv of 1.7 or better...a k/tv of 3.00 or better means your own kidneys are cleaning your blood more than the Dialysis treatments are....to do a k/tv you do a 24 hour Urine and take a sample from your used drain bag and draw your labs.....they can then tell which one has the larger percentage of toxins in it...
So my kt/v was 1.6 according to my PD nurse yesterday. So they're going to add another exchange to my nightly treatment, upping it from 4 to 5 2-hour exchanges. I asked how my natural kidney's were doing, they didn't seem to care and thought it was a pain that I even asked. I assume because it made the doc do some calculations. She said my creatine clearance was "9". Which I thought was better than it was last summer when they said I needed to start dialysis. Do you know what the relationship is between creatine clearance and eGFR? How close to the same number are those to indicators? And what's the difference between them?
I am not sure on that...whenever I have asked what my GFR was...they tell me that we don't record GFR anymore...Creatine and GFR are not the same...they told you your Creatine was 9 ?...That seems high...my last one was in the 3's...i have thought about going to the Health Fair and see what they say my GFR is ...and not tell them I am on Dialysis...just out of curiosity
So you have the same experience. No info about your natural kidneys. Mmmm. I guess it's just more work for them that they don't want to do cause our kidney's aren't doing enough to worry about them. Well I sorta would like mine to keep working as long as they would and see what I need to do to help with that cause, but the dialysis folks don't seem at all interested in them anymore.
I hear ya...they look at k/tv to see how clean your blood is...but like my kt/v has always been high...in the 3's...which I have recently found out that my own kidneys are cleaning my blood more than the Dialysis...My PD Nurse kept commenting on that but the Doctor really didn't listen to her....The Clinic recently got a new Neph...and she spotted right away that I have been over dialasized for 2 years..I think they thought I would crash...but I didnt...not yet anyway...so just gotta keep going less until they find the spot..
And I understand why you want to lnow the status of your natural kidney...because we want to hold on to as much residual that we can so we can still urinate and move off some of our own water
It took me a while to figure out that once on dialysis, they don't really care about your creatinine and eGFR since they're influenced by water (hydration and dehydration) levels and, of course, dialysis is responsible for taking care of those water levels, as well as removing toxins in it. Consequently, creatinine and eGFR data are no longer reliable, and K/Tv becomes really important - it shows how efficient your dialysis is and what changes must be made. As RhenDutcchess123 noted, if K/Tv is really good, it means your native kidneys are still doing some of that workload. In my hubby's case, we were simply grateful that my hubby managed to continue to pee so we knew that his kidneys were still working somewhat. It's a crazy, complex world. Keep on keeping on, RonZone. It would be wonderful if you can turn your situation around and snag a transplant!
My nurse has not agreed to trying Tidal yet. I'll be bringing that up when I meet with the team on Tuesday. But a lot of times, my "drain" stops with from 50-250ml still in. It varies from drain to drain. Doesn't seem to be a rhyme or reason for the drain stopping and the next filling starting. Gonna ask about that as well. I would like to think that my PD nurse is watching my numbers every day like a hawk, so as to know exactly what's going on, but I know that's a lie. She only looks at them on the Baxter site when i ask her about something. I'll be really glad when i join the "no drain pain" club!
Lol, Ron...you do have an amazing relationship with Amy! If the drain pain continues, ask your PD nurse for a referral to someone (a surgeon?) who can reposition it internally - sometimes it can be done through manual manipulation, via laparoscopy, etc. Those caths, if not placed just right, can "suction" on the walls of your body. Honestly, no one should be going through drain pain. I still think you're really fortunate to have an Amia cycler, even though our neph recently told us some people don't like them - said the set up was pretty lengthy an hour or so at night. I never heard that before. Is that really true? My hubby used one in a hospital and loved its compact size, etc .
Yeah, I'm going to pursue all possible causes of the pain until it's eliminated, one way or the other, including additional surgery. I mean it's not unbearable, but it's definitely annoying and will wake me up. Yeah, didn't realize how difficult it is to get the Amia, but I did start asking for it two years before I needed/got it, so it wasn't a quick request.
As for the setup, yeah, it takes some time. I try to maximize my time by multitasking during say the 4 minute cassette test, but for the time when it's doing it's "Prime" sequence, I've already washed my hands and am ready to connect, so I just watch a show on Pluto on my tablet or the news until she's through with that process and I can get connected. The prime takes about 18 minutes. So from the initial wipe down of all surfaces, to being connected and in bed, yeah, it's close to an hour each night, but that includes going to the bathroom, taking/recording vitals, brushing teeth, taking nightly meds, and anything else I normally do. I know some girls spend that much time just taking off makeup So I consider it nominal. Unconnecting in the morning is much faster (about 15 minutes including extreme hand washing before disconnection).
Yeah, the reason I asked for this machine initially is because it's very portable, about the size/weight of a small HP printer. I'll be taking it with me when I travel to my dad's for an overnight stay once warmer weather hits and I'm doing a lot of work at his house this summer.
Appreciate the reply. I honestly believe our neph was exaggerating - the timeline doesn't seem much different than when my hubby started out on the old HomeChoice Pro. His "nurses" told him this...I'm sure they weren't all that interested in learning and advocating for the Amia if they were comfortable with their training protocols for the old machines and very likely didn't want to move on. Ugh. Hubby said when he got to experience the Amia in the hospital, the set up was quite quick. And like RhenDutchess123 said, when at home, the entire process can be jumpstarted, too, much earlier in the day, no matter the type of machine. Thanks again.
I had thought about doing some of the set up earlier, but since I work and take care of my dad, it's hard to find the time in the middle of the day. Easier just to do it all at the same time in the evening at 8pm. Time is time, so it seems to not matter when I do it, still have to do it. That being said, I could change my mind later on and do more in the morning before I got to work, but for now, I'll just start my "ritual" at 8pm. Seems to work with my current daily schedule.
I set mine up about 830 at night...takes about 15 minutes ...when I hit the prime I forget about until about 10...hook up and go to sleep...If I go out at night I set it up all the to Prime...when I get home I hit Prime while I make coffee...then hook up and snooze ...I feel like the time is really minimal
Mmm. interesting methodology. I'm sure I will try this once I'm feeling comfortable with the process and feeling like venturing out. For now, I just start around 8 and am in bed by 9, then watch a show on my tablet for a bit before falling asleep, only to have Amy wake me up 2-3 or 4 times a night! (for now anyway). That way she doesn't interfere with my day at all.
You know...something else...another reason I set up.my Cycker earlier and let it Prime and sit for over an hour , is the solution has a chance to get nice and warm....I think that warm solution helps relax your peritoneal. muscles and helps with drain pain.
There is a setting in your preferences off of the menu key that will let you set that temperature up ...I keep mine at the highest temperature.
Even if you dont want to set up early...you should still warm up the solution in a heating pad, like you do for manuels
The Amia seems to warm the solution up nicely. I never even feel it going in now. In fact, in the middle of an exchange, between a fill and the next drain, I hear the machine going off like half way between. I think it must be filling the heating bag and turning on the heater to warm it for the next fill, which is about an hour away.
Thats great...if I prime it and start right away, it really doesnt have much time to heat the solution, although the fills afterward do have time and are nice and warm...Yours must have a better heater in it...
Wow that all sounds like quite a process and not a comfortable one at that. How do you stay so upbeat and positive. It seems to me that kidney disease is sort of the forgotten ailment with not much in the way of improvement of treatment.
Uh, Amy doesn't think I'm so upbeat and positive at 3 in the morning when she's alarming at me and I'm thinking of pulling her plug Ha! Actually it's just another life challenge. I can either be depressed about it, or just have fun with it. I choose the latter. And you're preaching to the choir on the slow improvements. Heck I was even past being able to use the new drugs developed to slow down PKD. By the time the came out I was in late late stage 4 and early stage 5, too late for them to do any good. I'm really hoping the next generation will have the artificial kidney to be available to them. Sorry I missed it, but hey, at least I have Amy. That didn't exist 50 years ago and folks just died from CKD back then with no treatment, at least in my part of the world (Alabama).
Larger caps you can order help you do just that. They temporarily stop the machine. Hit pause before you connect the patient line to the large cap. Put a new mini cap on the transfer set. When you come back, take off the large cap, and reconnect the transfer set to the patient line. Hit resume .
When I set up my machine, I borrowed a cassette from the PD nurse during training, so I could position the machine in a spot where I knew that the tube would reach from the machine all the way to the bathroom. It's a stretch, but it reaches. I have a 12 foot drain extension tube, but I don't fool with it at this point, maybe one day I'll try using it just to see how many more steps it takes to do that. I forgot to ask at my appt on Tuesday about an extension for the patient line. I'll try to remember to ask about it, but you can ask during your training about that if you want to be able to get to other parts of the house while connected. I can't get to anything but the bathroom, so no midnight snacks for me! (well unless I bring it into the bedroom)
I have a dressage measuring tape that goes 60 feet so I plan on measuring exactly what it takes from where I plan to put the cycler to the toilet. We have a pretty small house so nothing is really all that far away. When I asked my nurse she seemed pretty convinced it would reach.
I've been pleasantly surprised by how nice the nurses are. My regular one said she'd put in orders for me until I felt comfortable doing it. They are patient when it takes me a bit to wrestle one of the bags open (no hand strength) so they gave me a squeeze ball to work on it. They gave me a couple of blankets cause I'm freezing when I do a fill and a bag to hold them and all that paperwork. She wrote a letter for my work with my schedule and why I'm out all the time.
I'm so used to doing everything for myself that it took me awhile to get used to it. At first I thought it would be "get the training over with and get her out of here" but no they really seem to want to see a person succeed.
I'm supposed to get the Mircera today that is supposed to help my anemia so I hope it helps with my being cold all the time. I was shocked too when they told me I no longer go see my neph, he comes to the center and that's what my visits will be. I do miss MyChart and getting my lab results the next day. I have no idea what they are right now.
Hey, really glad you like your nurses. That's a very good sign and important that they are willing to help you live in the "real world". Hey, soon enough you WILL be doing all of this for yourself once they cut you loose at home But you should have it down by the time they do that and it shouldn't be an issue for you. Since they got my iron to a good level I'm not as cold as I used to be, but still wear a coat when it's 72 outside and inside Yeah, I was shocked too that I didn't get to go to my Neph's office anymore. The center handles all of it, labs included. I get a monthly report and that's it. And they do the 48 hour urine collection once every three months they said.
are you on any fluid restrictions? We did 2 exchanges with the 2.5 solution ad pulled off 500 with the first and 400 with the second. My BP is still a bit high and my legs still swell if I’ve been at work and not had my legs up.
And now I have to eat more potassium foods. I do meet with the dietitian on the 22nd. Still no shower as my husband hasn’t cleaned the shower head…it doesn’t come off so we have to do the tie a bag of vinegar to it and I can’t reach it. Because of the septic we don’t use bleach as it kills the good bacteria. So lots of Ridx.
Nope, no fluid restrictions. I've not had some of the usual CKD symptoms like fluid retention. I assume it's because I have PKD. EVERYBODY's case is a bit different from everybody else's, that's why YOU need to make the final decisions for yourself concerning your treatment. You know better than anyone what you need to do, with your Renal teams input. So take what I say and what everyone says on here as "thoughts" not advice, when it comes to suggestions for you. You will know what you need to do for your symptoms/situation. Yeah, not being able to put your feet up will not help the leg swelling. Just prop em up whenever you can.
Hey, lots of people wish they could chew on a banana or baked potato! Enjoy while you can! I REALLY hope your dietitian provides real help for you in regards to diet suggestions (which you can share with the rest of us!)
Hopefully you guys can get the shower head cleaned this weekend and enjoy that first shower! (In between exchanges). I know he's having to do double time with all the animals and supporting you right now, so be patient with him
Another tip: (Again YOU come up with your own methods, these are just thoughts to consider). Before I shower, I remove the exit site bandage, but I leave the "anchor" tape. The anchor tape helps support the transfer set during the shower so it doesn't "tug" on the exit site. I remove the anchor tape after my shower just before cleaning the exit site area with Except, then applying a new bandage and anchor tape. That is, IF you're nurse has you to use a piece of tape as an "anchor" to help support the transfer set tube.
Yeah...I clean my shower head ...but I don't quite understand how that stops the bacteria in the pipes going to the shower head...but instead of arguing the obvious, I just keep a my bandage on and coil my tubing over it...tape it....then cover the whole thing with a waterproof tattoo bandage...after my shower I remove waterproof bandage and take care of my exit site independently...I use extra Except on my surrounding skin...I never use water 5 inches from my exit site...then do my normal exit site care.....works for me..
I am on city water and I don't trust that its "clean"...I would have doubts on well water for sure..
I purchase this product on Amazon...search BBTO Transparent Adhesive waterproof bandage.....It comes in all shapes and sizes, but I just buy a 10"wide roll and cut off 10"....gives me a nice 10"x 10" bandage
This is a good idea you posted here. I also have wondered about the bacteria in the pipes, as well as many other procedures that I've been instructed on. But so far, after 6 months, I've not had any redness or other issues with my exit site letting the shower water hit it, so I assume the water is safe enough for it or I'd probably know by now. Now that doesn't mean it will always be safe, but I guess a lot of this process is chance taking. But like you, I don't want to make the PD nurse feel like I'm being belligerent or seeming to question her authority and knowledge, though there are some thing I do slightly differently from her original instructions just for my own piece of mind. Like I do an extreme hand washing before i gather all my PD materials, so my hands are clean before I touch any of it, instead of just doing the extreme hand washing just before connecting (which i also do). So thanks for this helpful tip. I will be using those waterproof bandages this summer once I'm out doing more yardwork and sweating more.
I have never had an infection either (knock on wood)...but if the "bugs" are in the water...my first thought was to not let my site get wet at all...I wear them while at the lake and camping....not that I would get in the lake, but ya never know if you slip and fall in while hiking or walking along the beach
Totally agree with the "at the lake" and "hiking" usage. I'll be using it anytime I do anything outside that even seems remotely dirty (or sweaty), even washing the car. And I ain't going anywhere near a lake anytime soon (hopefully). I totally understand your nervousness about the "bugs" in the water. I worry every time I take a shower "Did I clean the shower head this week?" but then yeah, no way to clean all the bugs in the pipes themselves, OR in the actual water source. I don't think our city is gonna guarantee "no bacteria" for our water supply. Gonna ask my PD nurse about this. I've not gotten any bugs yet from showering with my exit site exposed, but there's always "the day" it happens. And how are you really gonna know where the infection came from?
Yep...that just kinda how I feel...do our best to not let the water get to our exit sites in the first place...Especially when we know if we get an infection, it could stop our ability to do PD...Last summer when the PD Nurse did my yearly home inspection, I showed her my Waterproof Bandage idea...she thought it was an excellent plan...and everytime I bleach my shower head I can't but help think its redundant because its hooked to the pipe where the bugs live....I guess that sounds a little neurotic..lol..
If we swallow "bugs" we have a G.I track that has enzymes that kill the bad ones...but our Peritineal does not have that....Maybe that's why so many PD failures are from infection.....maybe it comes from the seemingly clean shower head that they religiously bleached every week
Here's how different mine is. I do soak the showerhead but since we have septic they said I could use vinegar. I take everything off, no covering on exit site and use one of those shower holder things to keep my transfer set from dangling.
I take a new clean wash cloth and soak it with antibacterial soap and wash all around my exit site in circles going outward. When shower is done I take another clean wash cloth and pat the area dry again in circles. Then I use a clean towel for the rest of me.
Once dry I use the clorox wipes on my bathroom counter and clean the exit site area with 2x2's and Except using ones to dry. I then put the antibiotic cream on, cover with a 2x2 and then tape over to hold it in place.
I've been wearing a PD belt cause even the paper tape is causing a rash so I only use a small bit.
That's what my center approved concerning showers. I'll ask today at my appt about infection rate. I do have some of the waterproof tape but god knows what that will do to my skin.
Infection is the number one reason for PD failure.....If you get Peretonitus, it can destroy your Peritoneal Lining...They don't, however, give a specific reason why it gets infected. But because they tell us to bleach our Showerheads weekly I worry the water is the most obvious cause...but thats just me...and I wear a waterproof bandage when showering and I do my best to not let water 5 " from my exit site...even though we are healed, the exit site is forever open from the outside to the inside of our peritoneal.....but you should always ask your PD Nurses opinion before you change any of the steps she teaches you..My PD Nurse thought it was a great idea
love your sense of humor and sound like you have a hate love relationship with Amy lol but you know she is good for you. When I get a machine it would be nice not to have that drain pain . But having it with manual I probably will . I see my nephrologist tomorrow and I going to let him know he forgot to tell me about this drain pain . I envy those who never had it .
So are you still having a good bit of drain pain during training? I feel bad that we never talked about it too much, but I didn't want to make a huge deal out of mine since a lot of folks never experience it and they go "what is drain pain". There's been a ton of posts about it, but that might've been before you got on the site, not sure. Mine had DEFINITELY got a lot easier over time, so yours should as well. So hang in there!
no problem Ron not talking about it . I said to my nephrologist yesterday he said how are you feeling? My response was you didn’t tell me about the drain pain my pd nurse said she was laughing that I was getting on to him he told me the reason he didn’t mention it cause less then 10 percent of his patients get drain pain so he didn’t mention it. I told him yeah you should know by now I will fall into that percent . Yeah he said he remembered when I was in the hospital how they all had a hard time figuring me out when my lipase number were out of this world you had to call so many differnt specialist in trying to figure you out . He promise me the drain pain will get better.
We did a fill and dwell then drain it out I only had one super sharp pain today most pain was about a five or six if I kept moving I didn't have as much pain so I was constantly doing a 2 step she said you want to sit a minute I said no I finally found something to do to ease the pain . She was afraid for me standing so long cause I have the type of blood pressure from sitting to standing my blood pressure drops at least 20 today it drop 50 it was high when I went in I think from rushing from one appointment to the next but sitting 174 standing 124
She filled a second time today and drain part of it out she want to see how I do with having fluid in me and we will drain it in morning.
I practice not on me how to hook everything up myself I have a really hard time doing two things at once so we finally learn a way for me to hold the transfer set and connect and I connect usually you old the transfer set down I have to hold it up and hold the connector both together and when it open I have to switch the transfer set back in other hand but we did it all safely so she said I can do it this way . One step at a time
Hey, i didn't get an email from this last post, just happened to see it. Not good that I'm not getting emails when you post a reply.
So YES, you have to let them know what works for you! They have a cookie cutter version they like for everyone to use, but it's not for you and me, obviously. I'm glad you are "standing" up for yourself (pun intended!) And really glad you jumped on your doc about drain pain. That's like having surgery and getting a terrible infection and the hospital saying "Well we didn't want to tell you you might cause only about 10% of people die from it". Like sheesh! And I can't believe only 10% get drain pain with all the comments I've seen from people on here who have had it. The chair they had me sitting in for dialysis training is a chair like they use for HD I think, so I was leaned back a bit, which put even more pressure on my catheter against my peritoneal wall I think, causing the pain to be worse than if I were sitting up straighter. That's amazing how your BP changed from sitting to standing. So yeah, do what you need to do. Once you get home, you can obviously do it however you need to until the drain pain finally starts to dissipate as your body get's used to having this alien thing inside you. It will probably take a couple weeks or even a tad more, then once you start on the cycler, you will feel a different version of drain pain since you will be lying down, depending on the position you lie in. You will have to experiment again on which position works best. But be prepared for it to happen once you transition to the cycler. Once you are on the cycler, ask them to use the "Tidal" setting for you in the beginning, until the drain pain subsides after a couple or three weeks.
It's not unusual for people to keep fluid in them all night, so that's a good option for now. Like a "manual" version of the Tidal setting on the cycler.
And yeah, you will have to figure out the best method for doing all this where you feel very comfortable and totally in control so as to avoid accidents. I watch the end of my transfer set like a hawk, not getting it near anything until it's connected to the patient line.
Very proud of you for braving through this. Even with the drain pain, I still feel this is a better solution for me other than in-center HD.
Provide an update once you are on your own with all this this weekend, and if you have any new methods you've figured out for yourself on how to do it all.
How's your husband doing during all this. Sure wish you had someone to help you!
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And I have to care for her with daily cleaning, software updates, gentle handling, and making sure she has power to eat. And the voice they've given her to "talk" to me is actually quite pleasant, even during the nagging alarms. So overall the experience with her has been challenging (most good relationships are), but we are getting to the point of being able to "grok" each other (That's a Robert Heinland coined word meaning "a concept of self transcendent experience and emergent identification beyond those of many "subject-object" assumptions."
But thanks!
Clinic experience with PD?
