I went today for first bandage change . My catheter look really good. I filled out a ton of paperwork the first page of paperwork kind of scarcy all the stuff they said you need to be aware of that could happen .
Trying to get my training scheduled was a pain . When she call last week we were going to do training the week of the sixth. Well someone ended up in hospital and that delayed their training so it push me out unless I wanted to go to another davita center one in the afternoon that is 35 to 45 minutes from me . I said no it to far from someone to have to drive me in rush hour traffic it would be different if it was me but since I don’t drive I don’t want that burden on anyone. So her and her manager decided I can get it flush on the sixth start the following week for training on the 13th so that put me a little behind than I thought . But I’m still feeling good so I guess that is ok . They said my back pain was normal just to do heating pad and tynenol and take a stool softener every day she said constipation can make flank back pain too and with the pd catheter I don’t want to get constipated .
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stool softners daily if you want to take another pill or I found these and like them and they work, Metmucil Fiber thins. They are 2 types of flavor. I get the cinnamon spice, don't remember the other one.
Ahh, gotcha. Thanks. I have some sitting here for the same exact reason. I've been making smoothies using protein powder, frozen berries, a little water and some non-dairy whipped cream and it has been helping as well. Not sure if it's the berries or the combination, but it's improving the flow of things.
It's weird. the machine will alarm, for example 3 times, but when I wake and disconnect it could say 17. I don't hear them all and no one so far has been able to tell me why. As for getting them to leave you alone, trial and error.
On my machine, when you get the summary information on the session over to the right is a button to press to see how many alarms but it doesn't say the type
Well, I'm the king of postponing dialysis I think after the PD catheter surgery, so I'll be the first to let you know that just doing a weekly "flush" should keep your catheter cleaned out until you actually start dialysis. I did those flushes for months while waiting to get started on the cycler. Every Sunday afternoon, I would run one flush of 500ml, drain that, then immediately flush with another 500ml. You can flush with 300ml and it will work just as well I think. So since you still have residual kidney function, this delay shouldn't be an issue. It's those without any kidney function where it would be a problem. Let us know how your experience with that first flush goes. I've told every body about my first
And boy, yeah, the paperwork. Sheesh.
Oh Fresenius provided an iPad with some training video's on it. And I had a paper document as well since my Baxter set up was a bit different from their usual setup. I found out I could actually access the training video's on my computer, so I asked for the account to be set up so I could have access to those the weekend before my training started, so I had gone through all of the videos and all that weekend before starting training. It helped to be familiar with the process a good bit. So you might ask them to let you have the materials early as well if you wish, since you have time, but that's up to you. That is, if they provide video's or whatever.
Oh and I really hope your back pain subsides very soon. And yeah, I was at my clinic today meeting with the dietitian about my new high protein dialysis diet, and constipation issue was brought up as a potential cause of the alarms I'm getting on my cycler. So looks like I'm going to be eating a lot of raw fruit and veggies and taking Colace. I also like BlackMidnight's suggestion of Metamucil Fiber thins. Will definitely look into those if the phosphorus content isn't too much for my labs.
I must have the most laid back center….no paper work so far….2 changes a week apart but I get the first flush Feb 2nd. I do go see the surgeon on Monday.
The center is independent, neither Davila or fresnius so that might explain it as it’s not very large but we are rather rural out here.
I’m still thinking I might just suck it up and drive to the one in Joplin. The nurse said once we start I have to come in twice a month…once to meet with the doctor and then to do bloodwork. I’m not happy about that as will interfere with my job and I’d prefer to just do it all at once.
No exact date on training either and that’s another sore point cause again it’s going to disrupt going back to the office and while i can wort from home it gets lonely after awhile.
I still think the breathing tube during surgery did something as the post nasal drip is still bad so once I can drive I need to get an appt with an ENT doctor cause I’m tired of sleeping in the recliner.
Other than all that things are getting better everyday. I do take a colace everyday but will look into those cookies.
I also had issues from the breathing tube. To be honest, I didn't realize they actually did that for this kind of surgery, but it seems they do. Mine cleared up after a couple of weeks, but if you still have trouble, yeah, see a good ear nose and throat doc.
The extra mucus seems to have cleared up finally although I sleeping in a mostly sitting position still it's at least in the bed now. I'm back to my normal allergies, yay.
My does my labs, then when the results are in I have a meeting with the PD nurse, doctor, dietitian, social worker all one right after the other or sometimes they are all in the room with me.
How long does that take. I'm trying to keep my boss updated on my "progress". I got cleared by the surgeon today but still have the no more than 10 lbs restriction until 2/9 and my laptop and bag weigh more than that. So if I have to drive to the center to get labs done that will take over an hour as it's not on the way to work unlike the clinic I normally use. Then another day for the meetings so that's at least 2 days a month that work will be interrupted. I guess if I have to I can stay late or come in on a weekend to catch up.
my labs take about 15 minutes to do. then I go home. As for the meeting about the results that takes anywhere from 45 to an hour depending on conversation and q&a. I can see my results in my Fresenius portal the day after my lab draw. This helps me at the meeting because if I don't have any questions and they like the labs, I am done sooner.
Ah that might be a problem as my center is independent and not affiliated the DaVita or Fresenius and I don't know about a portal but I will ask on Thur.
Horsie63 did the surgeon check your port I just had dressing change on Friday and wonder if the surgeon will undo it to check I go tomorrow for my post surgery check up with surgeon . I’m sure the 10 pound limit will be awhile.
No just peeled back a bit and looked at the healing of the incision. The nurse said they had done a flush as part of the surgery so maybe that's why there's no rush. The paperwork they gave me to return to work said no restriction after 2/9 and since the earlier sentence said the no on over 10 lbs I'm taking it to me after that I can carry my laptop. I'll verify with the center though.
I have always had flank pain with my pkd I just think the surgery bought it on more than usual .
I go tomorrow for yearly test for my transplant center an ultrasound and an echocardiogram which I think I have to lay on my left side and that where my catheter is so I haven’t been laying on that side much but I can I just hope these test don’t bother me. I wish it wasn’t so soon after surgery but I have to have these by a certain date they said which was this week. Wish me luck
hey, for real, that's very soon after your surgery. Hopefully they will handle you with kid gloves once you tell em about your surgery. Always had flank pain. I haven't had that much except a couple of times when cysts have burst. Whoa nellie, that hurt!
had my test today the echo test came back normal my ejection faction came up 5 percent since last year do that is great it up to 55 it was only 25 in 2019 that what kept me off transplant list but I got it up with meds
The ultra sound I had was on all abdomen kidneys liver pancreas glass bladder even though I don’t have gallbladder she said she had to do all abdomen and it hurt when they push that scanner on my kidneys and liver cause I have so many cysts and it hurt like heck on lower abdomen where she push where I am bruised from surgery but she was very careful to go around my surgery site that test won’t come back to Monday so she handle me some with kid gloves but she had to do what she had to do .
Yeah, sorta figured it was going to hurt. Doesn't seem to be a way to escape pain in this whole process. But glad they did handle you a little more gently. I know you're just glad it's over! I have not been through all the transplant testing yet, so not familiar with those numbers, but whatever they are, it sounds like you are doing a great job of getting in shape for "the call" whenever that happens. (Hopefully in the near future!) It's a shame that you have to even go through this whole PD thing just to get to the transplant stage, but it is what it is. We are part of the last generation that will hopefully have to endure all of this. I'm praying by the time the next generation get's to our point they will have much better methods, like a working bionic kidney or something that's good for 30 years, like knee replacements are. I can't imagine what my dad's life would've been like if he had not had both knees replaced in the early nineties. He's still walking around, pain free (in his knees anyway).
I take 1 colace in the am, 1 at noon, and 1 at bedtime but that wasn't helping "soften" so I had my husband pick up the Metamucil Fiber Thins in Apple Crisp. I can't find if they have any phosphorus but they have some sodium and some potassium but not high amts. They don't taste bad but the last couple of days my tastes are "off".
I still need to find them I keep forgetting when I go out to look cause stool softener only help some but you are taking three a day I was only taking one and the miralax maybe I need to do three times
I never did have trouble pooping beyond the first three days but they are definitely not soft. I upped my morning ones to two and now I have the fiber thins we'll see. I really don't want to take miralax every day. And I don't want to go overboard and have an "issue" like when I was taking it after surgery. Seems to be a fine line between not enough fiber and too much. Sorry if that's TMI
Hey, we're all in the same boat here. I don't think there's any such thing as TMI at this point I also take Colace (1 per day) and just got the Metamucil Thins that I take once a day. So far so good. Increasing protein and taking phosphorus blockers are not good for "flow through", for sure. I'll increase Colace if needed. But like you, I don't want to fix one issue by creating another one!
I'm glad your tests went well. Are you still taking the carverdilol? We did a dressing change and my first flush and that was a non event. Looks like on 2/22 when she teaches me exit site care I can finally take a shower. I also asked about training and this kind of pissed me off...I have to wait for my next neph appt which is MARCH 30 as he's out of the country. So it's flushes for 2 months. I've also developed some pretty bad edema in my feet and legs. I called the neph office and the nurse is letting the doc who is covering for mine know.
Oh I would be irritated that you have to wait that long . You had your surgery before me wow having to wait to the March 30 doesn’t seem right why can’t pd nurse start training They don’t need the nephrologist for training I can truly see you being pissed oh I’m just mad at your situation for you cause I know you wanted to be on a plan for work
Good to hear how easy the flush was sorry you have edema I know my center told me to keep staying my lasix even when I’m on dialysis which I thought they would take me off but pd nurse said no they want you to stay on it . Are you any fluid pills to have you with edema?
I know you say you are out in nowhere and it a small center but I just wish things were going better on your plan for you I will almost be done with my training when you just get started if all goes right I wish I could give you my place cause I don’t work you do but that can’t work. Good luck to you in this journey maybe is the doctor who covering for your nephrologist also a nephrologist then why can the creaking center use him to ask any questions or labs that need to be done
These people are the absolute slowest to get stuff done. It doesn't help my neph is Indian and is out of the country but there's more than one there, so I'd think someone else could look at all my labs and step up.
Not on any water pills but that might change here soon. Waiting on a call back. I wish I lived in a bigger city instead of out here in the sticks but it is what it is. I may re-evaluate my continuing to work if this clusterfuck continues as it will seriously impact my being able to travel for work. At this rate I'll not get on a cycler until sometime in April. Having to go in once a week for a flush means if I have to go to Wichita or KC for a week for work I'll have to skip the flush. And doing manuals might be problematic as I share an office, no way to shut off the AC so that leaves sitting in my car...which is dirty and it's too cold without the heater. This is turning into a logistical nightmare.
Ok, just reading this second note you posted. I agree, this is messed up. But for those of us in smaller communities, it's what we have to deal with. See my above note about possible solution for the week in Wichita Or KC. Just ask them to work with you. I've done that plenty. (I actually just didn't give them any choice when it came to the back pain I experienced with manuals, and with getting my hernia repair done-which they said I didn't rally have to have done---uh, yeah, I did). That would buy you some time so all this can be planned a tad better. Just an idea. You know better what you need to do, but for sure, don't be afraid to tell em what you need and how you need it!
When you share the office, do you mean in Wichita or KC? Or at your regular office? Again, I"m the kind of not doing things "normal". Ask for a shortened manual exchange event. Instead of a month, will they let you work from home for two weeks and let your center know what you will just be able to do manuals for those two weeks, not a month, and then you will need to start on the cycler at night because of your office situation. Again. I wouldn't give them much of a choice.
These are JUST ideas for you to crunch on. They might inspire even better solutions that you come up with. And others may see this and post even more solutions. There IS a way to do this (I'm living proof) within the life you have and things you have to do. I've already told my center that on a given day/night when my dad's dementia is full tilt, I will not be doing dialysis that night. I live in the real world, as do you, so they will need to know what's possible and what's not. Now I know I have to give some too as part of the deal, but I'm just not able to do all the giving. So be good to yourself and see how you can sort all this out. Two months from now, you will look back and say "hey, i figured it out" (for me it's 6 months, but I'm a slow learner).
Another option. Do manuals working from home, and then stop, just do weekly flush till you get back rom Wichita or KC, then start cycler. Something to consider. Don't leave any option off the table when you talk to the center.
It's possible that will work. Typically we leave Monday to drive up, work the 1/2 day then go to the hotel. Work T, W, TH and then drive back Fri. It's a 3 hour drive to either place from work so if we leave in the morning on Fri, depending on the job, we'll be home around noon or a little later. I'll have to see how it works once we go up to either place. The one good thing will be eating out. Right now my restrictions make choosing a place difficult but so far they've worked with me.
Oh, and good news. I called on Thur and told my neph office about the swelling as it was getting ridiculous and they prescribed Lasix. Taking it now for 3 days and swelling gone, can breathe better, and best of all my BP has dropped to 127/87 when it's been in the 140's over the mid and high 90's.
Hey, I really hope everyone works with you to help you figure out solutions to this. I know you can do it, if everyone else supports you. After you get through this initial "transition" phase from the "old normal" to the "new normal" it becomes a LOT easier. That transition period is full of unknowns and a lots of new things thrown at you, new problems to solve. That's not easy for those of us who are used to having total control over our lives
Very glad you got the swelling under control! That's a blessing. And boy, I'll take that blood pressure reading any day! Good deal.
We'll see how things go on the 13th when I plan to go back into the office. My 10 lb limit should lift as of the 9th according to the surgeon's letter.
Oh wow, that is a LONG time to wait for training. There's no reason they would need to wait that long (in my humble opinion), since the nurse does all the training. The only reason they need the doc is that the doc is the one in charge of your prescription, meaning looking at labs and figuring out what percent solution you need, how much solution, how long the dwell time, and any medications that need to be added (by them at first, then by you after training) to the solution bag before the exchange. I would think they would have another neph who could help with that part while your doc is gone. Or do they just have one neph. If so, that is very unusual I think. Even our little clinic has three that rotate. Now they cover several clinics in our rural area, not just our town, but they are somewhat available. In fact, one (my original neph) is out on medical leave right now, so they're down to two. I'll be seeing one of those two on the 14th.
Edema. Oh dear, when it rains it pours. Yep, they need another neph that you can see, for real. Ask em if they can't get a stand in! Now, that being said. I'm the kind of postponing dialysis. I've been doing my own weekly flushes for months (Surgery was in July). So if you can do it, get em to let train you to do your own flushes till your actual dialysis training starts. Won't hurt to ask. I can back you up that it's very doable (been there done that, a bunch!) Now that won't help with actual dialysis, but it would help you work until you get the training scheduled.
there’s only my neph that comes to the clinic. The clinic is an hour away from his office. When I go his office it’s an hour drive. When I say rural I mean middle of nowhere. His office is actually in another state. I’ve not been able to locate anyone closer. While we have a small hospital I doubt they could do emergency dialysis and the bigger hospital is 2 hours away.
It’s hard to get anything done out here. Not enough people to support anything but Walmart oh and all the fast food places but those are all 20 min away. The “town” I live in had 250 people mostly on farms.
Gotcha. So seems waiting for the one Neph is the only option. I pray that you will ok from now until he gets back and can get your prescription in place. Do what you need to do during this time to take care of yourself, including trying not to worry too much (I know, easier said than done. Anxiety IS part of this transition process. I remember all too well how I felt during all those weeks of waiting to figure out why my back went wonky during manuals, wondering all the while if the same thing would happen once I got on the cycler and I would totally fail PD. Talking it out here is a great way to process/relieve some of that anxiety. I wrote volumes as you know
got my ultrasound back across it said polycystic kidney and liver but it said the right kidney is massive and the one of the cyst in the liver is really huge so I think all that pressing on other organ is where my back pain and side pain come in
Ahh, so the explains the back pain. Makes sense, there's only so much room inside there. I've got cysts on my liver as well, but no one has ever mentioned it much, never said anything about it or whether it's function is being affected or anything. Did they say anything about yours? I might ask about it my next Neph appt.
So how are you doing now? Healing up nicely? So your training still set for the 13th? I'll be very interested in if yours is very different from my experience as far as the training goes, why they tell you to do, specifically.
Has flush today and they put on 500 then drain it and at the end I jump out of my seat tears in eye felt like a knife she said that call drain pain she got 400 out that really hurt she said some people get drain pain . Then she put in1000 then drain it out she said if I start feeling pain let her know then she can clamp it . I started to feel pain not like first time we did get out 1100 so the other 100 came out . She felt bad cause I had so much pain. I never want to have that pain again . But I’m sure I will.
So mad the transplant center call and said the ultrasound on your abdomen you didn't need they put in the wrong test since I have polycystic kidney I should be having an abdomen cat scan not ultra sound she said and we need it done soon . Now I go tomorrow for cat scan.
sounds like you had a Monday like mine. The nephrologist Office pt me on a diuretic and said go in Mon and get bloodwork done. So I crate my dogs and drive there… no request so I called and left a msg and waited a bit…still nothing. So I drive home and get a voicemail mail after I let the dogs out. I’ll go tomorrow.
Then on my way to my flush I get stopped by two trains and every red light.
My flush was painful too…almost like the absolute worst period pains and I’m in menopause. At one point she had me stand up. At the end it stopped hurting but yeah I get the knife stabbing bit.
yeah she had me stand up for the second train she did and even dance when she filled the second one she had me lay down , yeah I don’t want that pain again she did say when doing manual it is easier to stop than when you are doing machine
Hey, I feel bad that I did not prepare you and Beachgirl better for the drain pain event. But didn't want to increase your anxiety over it. It WILL get better as your body gets used to it. See my latest post to Beach girl for additional info, but please ask me if you have any questions about what to expect during manual training. And see the tip about standing up during drains until you get used to them. And yes, you will learn the PD dance that everybody who does PD talks about. Especially in the middle of the night when the cycler alarm goes off cause it's not happy with how much has drained with me lying down on a particular drain cycle.
Hey, sorry, just seeing this from 3 days ago. Ahh, so it was actually worse for you during your first flush "drain" than it was for me. I hate that you had to go through that. And i wish I could tell you that you will not feel that pain again, but that would not be the truth. BUT that being said, I don't know how or why, but after you've done the flushes a few times, and once you start training, somehow, the pain diminishes. I don't know if your body just get's used to the catheter doing it's thing, or what. I never got a good explanation from the PD nurse or the Neph. They said that the drain pain is caused by vibrations of the end of the catheter where the holes are (I'm sure the nurse showed you what a catheter end looks like--like the tail of a seahorse with holes in it). I did find that standing up during the last part of the drain reduced the "drain pain" for me. And yeah, I've heard a lot of people talk about the "PD dance" to try to get all of the fluid down to where the catheter can pick it up without sucking on your body parts so hard and whatever nerves in there get irritated that cause the pain.
So I had 6 months of flushes to get the manual flush down pat. After the first month, I had very little drain pain, and after that, pretty much none from the flushes. THEN I started on the cycler. Doing that lying down was a whole new experience and caused new "drain pain" events. The drain pain would change depending on if I were laying on my side or my back or whatever. And after three weeks of it, I've learned to lay on my left side. That causes the least amount of irritation. I wouldn't call it pain at this point, just an irritation. And sometimes, i even sleep through it, which is very nice. That's the goal to be able to sleep through ALL of it for the entire night. I'm not there yet. And as I've posted before, if the cycler can't drain as much as it wants to out, it sounds an alarm and the best thing I can do is get out of bed and stand up during the remaining part of the drain until it's finished an the cycler starts the next "fill".
So there's two parts to drain pain. First the flush/manual drain pain to get used to, then once you've got that figured out so it doesn't bother you, then you have to deal with the cycler drain pain when you start on that, until you get used to it after a few weeks and you're able to sleep through it. And yes, i said, weeks, not days. So be prepared to be a bit of a zombie while you wait for your body to get used to it and you learn which position causes the least irritation/pain. Now, You may NOT have that same experience, but based on your first flush, it's a definite possibility. I mentioned in another post that the first flush made my butt pucker. NOW you know what I was talking about! But the good news is that it get's better. You will figure it out with your nurse. And we'll be here to help you through it.
Just a little side comment... I find the drain pain incidents so interesting - that all of you on this thread experience this. My hubby's kidneys failed due to diabetes and he never had drain pain, just a little fullness and an emptying sensation - that was all. So I'm assuming it's maybe due to having polycystic kidney disease crowding everything in the abdomen? or the cysts being sensitive? Kidney issues are so complex. Anyway, I truly feel for everyone on this thread. Crossing my fingers that it improves for everyone.
I remember your saying your husband didn't have drain pain. I find it interesting that someone could NOT have it the way that thing acts like a little Hoover in there sucking up everything in it's path! And yeah, I assume it's cause everything is so crowded. Who knows. "The team" doesn't seem to have any answers for why one person has it, another one does not. To be honest, they don't seem to really care that much about it, just that it goes with the territory, part of the process.
thanks for your input Ron my nurse did say it may the end of the catheter pushing against my wall it like she said if you are drinking from a straw and at the end it hard to suck up that little hit that is left . She was honest and said you may have it again but she said like you in time it will go away . I don’t sleep much as it it cause of being caretaker for my husband so guess I’m really going to be a zombie I see some naps in my future.
You and I are going to be in the same boat for a while till we get used to this. You are caretaker for your husband, I'm caretaker for my 95 1/2 year old dad who likes to come in at 4am (this morning) yelling "Anybody home?" His dementia puts him in a state sometime where he doesn't even know where he is and I have to stand at my door (that's as far as my connection to the cycler will let me go) and explain to him that he's at my house, it's 4am and he needs to go back to bed! So between the cycler alarms and drain pain and my dad, boy do I know how you feel! I'm looking for the night when I can sleep straight through all 4 drains and my dad will have a good night all in the same night! I know, wishful thinking. But I can hope! Oh and then I try to get some work done during the day when not cooking meals for my dad and cleaning. But it's all good. I do get to the end of each day. Tell me about your typical day.
this is a long post for Ron about my husband he ask how my day was. So this is nothing kidney related if others are reading may want to skip over it.
In morning help my husband with his personal hygiene. Comb his hair .Help him get dress he can put his jogging pants and tee shirt on we work on that a long time. He can not put his socks and shoes on so I have to and his feet are so swollen it is hard and he want to wear his hiking boots cause it gives more support. Then I get his breakfast then I get my. Then I get myself ready for the day. Right now typical days are going to doctors for him or me so I always have to arrange for someone to drive us I don’t drive not for twenty years after having the two brain surgeries. I can’t lift anything yet so we have to bring his Rollator where ever we go. Plus cane for him to get down three front steps . So someone else has to put in the car. I have to do his physical therapy with him every day the therapist was coming twice a week now she only coming to the house once a week . So I have to do an hour of the physical therapy with him. Fix lunch clean straighten house when I can . Do laundry . Fix supper . Take off his shoes give him night meds . There much more but you can see how most is. I do try to go for a walk every day when I know he is safe sitting in the lift chair with phone beside him that is my get away . My niece I hired to come over once a week to do deeper cleaning that had help me a lot.
We finally got in to see a rheumatologist for him today she really think he has lots of problem but one of the worse cases of rheumatology arthritis she has seen . She said people are usually in the hospital when they are this bad she spent an hour and a half on his visit with him today so I was impressed that she took so much time with questions and an exam she said that she has to wait for labs to come back before she can say an accurate diagnosis but she is pretty sure it is RA. His legs and feet are so swelling the edema is leaking out of his legs . It been a journey with him falling he fell in January and had to get staples in his head. So one day at a time I was worried when I go on the cycler if he falls I can’t help him so your tubing just go to the door I wonder if you can get done type of extension for it.
Yep, you definitely understand my day. My day with my dad isn't much different from yours with your husband at this point. So I can TOTALLY empathize with you! Except i don't have the deep cleaning and other help, but I'm looking into solutions (Medicaid waiver being one of them) for some assistance, cause it just ain't happening now that I started dialysis. I mentioned to hors-ie that you find what you can do and what you have to give up. I REALLY hope your husband get's some relief at some point and this doc can help with doing that, so that YOU can get some relief. But until that happens for both of us, this is just where we are, right? You will need to ask your PD nurse about cycler extensions. I keep forgetting to ask mine. But even if my dad fell, I wouldn't be able to pick him up so I'd still have to call 911 for help. But if I had an extension, I could at least get to his bedroom and talk to him, which I cannot do at this point. I've got it on my list to ask about at my appt with the team next tuesday. I'm glad you can go for walks. You do need some "me" time. On days when work is slack, I should do that now that the weather is warming up a tad. Thanks for sharing your "day" with me. It helps to know I'm not alone in all that I have to do for my dad (and myself). We'll share more in coming days. As for others reading this. I doubt we're the only ones dealing with multiple issues (some not our own). There's probably single parents out there on dialysis as well. Might start a new thread about that topic one day.
Whine away girl, you got your own burdens to bear. I'm working from home, so it's much easier for me in that regard than for you, well except for when I have to drive the two hours one way each saturday to take care of my dad's house. Saturday's are very tiring, so I take Sunday off for the most part to rest and catch up on sleep with nice long naps! At some point I'll go up Friday evening, with my cycler in tow and spend the night at his house. That would make it a tad easier that doing it all in one day. Especially during grass cutting/weed eating season that'll be starting soon enough. You have your "busy" seasons as well. We all do. It won't be easy for any of us. You included. But we will get er done! Right?
We all have differnt things we have to deals with . You have just as much right to whine .
Yeah I was taking care of all our yard too but I think I may need help this summer . It hard for my husband cause a year ago he was walking around with no problems it hit all of sudden so someone being so independent it is hard for them to lose that independence. My husband a big guy like a football player he is over 250 pounds so it hard for me to lift him if he falls .
I feel your pain with your polycystic liver and kidneys. The transplant center is probably looking to see how much room you'll have for a kidney should one become available. If you have little to no room they'll want to take one or both of your kidneys out. Especially if you have a good amount of pain.
They wanted to take mine but they still function so as long as we manage my pain I'm keeping them. There is room in my groin area for a kidney and I am no where near the top of the list so we may revisit that idea at a later date if they no longer function or we can no longer manage the pain.
I know it feels like there's always something causing you grief (or pain) but hang in there and just take one day at a time. You are not alone.
yes you are probably right . I’m like you I am still urinating so I would like to keep my kidneys as long as I can. The transplant center call me today saying cardiologist approved me for heart cath I need now. And I have to meet again with social worker and dietitian again . She said this is all to get me active ready . I ask I’m already active she said yes you been active but active ready mean you will be receiving more calls so that would be a blessing if I get a kidney she said I’m eligible for active ready in May.
I may have ask you before how long have you been on the transplant list were you the one with also a high prn and going to go to John Hopkins if I have you mix up with someone else I’m sorry . I think I may recall right but not positive.
One of the things I've requested of my Renal "team" is to help me preserve my natural kidney function as long as I can. To be honest, I don't think that's going to be a top priority for them. They are so "dialysis focused" they don't seem to care about much of anything else. I've got a meeting with the team on the 14th. Gonna discuss this with them one more time to see what is being done to preserve my kidneys WHILE doing PD.
Yes I am one, on the list for two years so far. I have only been on dialysis for a year though. I have the high antibody count and my blood is B+, so I am a tough match and yes I have my appointment to be evaluated at Hopkins coming up.
I need to try and do something, I just can't sit here. I hate dialysis so I need to find a way to a new kidney. I'm not ready for this to be it. I rather this be a bump in my road. Something I can say, "remember when..." someday.
It's hard sometimes to stay hopeful but I wake up that way everyday nonetheless.
I just got a call from Hopkins, the Dr that does the Plasmpheresis is no longer there.
The transplant nurse directed me to NYU Medical Center. I tracked down the Dr. that does it, hopefully I can get in to see her. New York is closer to me than Baltimore, but now I have to start all over.
Trying not to be down about it...just another hurdle...
Hey, are you starting PD training today as your initial post in this thread said. Horsie63 started today as well as you probably know, which was good because of her water retention issues that I never had. Do post updates on your experience. I REALLY hope they find a good solution to the drain pain you were having. That is not acceptable. Let me know if standing during the drain helps, especially toward the end of the drain. Will be thinking about you this week!
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Update! (Cancer, dialysis & bypass)
My 1st week of PD at home
Young Adult Kidney Patients Doing PD Dialysis
Had surgery, getting ready to train for PD Dialysis. 
