I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: rookiegirl on October 19, 2007, 12:49:16 PM
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Hi All. I was really excited to come across this website. I've been reading everyone's messages and I've learned so much. THANK YOU. I had my PD catheter placed on 10/05/07 and I start my PD training on 10/22/07. I have been feeling really depress. I can't seem to get use to the idea of this foreign object connected to me. On top of it all, my belly is all swollen and it is very comfortable to situp.
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Welcome!! :welcomesign; :welcomesign;
I am gonna assume you will be training on manuals, do you plan to use the cycler in the future?
Yeah. Those of us who fill during the day or have fill left in can attest that you get FULL!!!!
It does get better, and easier with time, do read our previous threads on capd, hopefully you'll get ideas
and know what to look out for!
Anne
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MyssAnne, thank you for the warm welcome. This may be a dumb question and I'm still learning all the medical terminology. Is the cycler the machine you hook-up to at night? If so, this is what I want to do. I'm not sure what they will do when I go for training. I suppose they will start me on manual?
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Did I say "comfortable"? Ooops! my mistake I meant to say UNCOMFORTABLE. It feels as though I'm constantly pushing my belly out. I hope this will go away really soon.
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:waving; hi rookiegirl,
I saw you in chat for a minute but I must have gotten bumped out. Glad you could join the group and I hope you make some new friends here!
Welcome!
:welcomesign;
okarol/moderator
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Hi there .. i have been doing manuals for 3 yrs now .. sadly that bloated feeling doesnt go away but you do get more used to it ! Training isnt that bad once you get used to it , at first it will be scary but soon you will be able to do it with your eyes closed ..honestly ! Best thing to do right now if your feeling really bloated is to eat several small meals ..rather than a couple of large ones ( it makes it easier on your stomach) and watch for getting constipated ..get laxatives if you do get constipated. Anything you want to ask just lets us know , im sure someone will be able to help you on here .. :2thumbsup;
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If you have a problem with constipation now and you dont want laxatives, you can start taking stool softeners, that helped me in the beginning, now if and when i feel the ol' plumbing backing up (or slowing down) :P I just drink some warm prune juice, figured it was better (and more effective) than poppin a pill. I am sorry if you are uncomfortable, and as they say, it will get easier with time and hopefully you will get used to it too. We are here for you if you have any questions, looking foward to hearing more from you :2thumbsup;
And yep, the cycler is the machine you hook up to at night, it is so much easier than manuals but to each their own, Good Luck :thumbup;
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Yes, the cycler is the machine you hook up to at night, but everyone SHOULD be trained on manual first. That's the way my nurse put it, you just never know when there's going to be an emergency. For me, I do the cycler during the week, then when I am at my fiancee's, I do the manual. I do the packing up and hauling, so for me, this is best. You DO get a big belly. I hate mine, but that's part of it. Small meals are best if possible. I have not had constipation (knock wood), yet, so listen to others on that one!
I do ilke the way pd makes me feel. It's daily, so it works daily, and when it's done correctly (enough dialysate), you feel good too!!!
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You should be trained on manuals first, and then the cycler if it's what you want to be on.
For me, I never had a problem with feeling a full belly or big belly, or w/e... because I *MADE* my doctors change my prescription after about a week on the cycler with a last fill... I said, nope, not for me... I will NOT do a last fill, I need to be dry during the day. I didn't really eat when i had a last fill, b/c I felt full already, I couldn't wear certain jeans, b/c they were to tight with a last fill, and I also was a high transporter so I ended up retaining almost all of it anyways.
Once i was changed to no last fill, and I was dry during the day, I could eat again, and drink, and wear jeans, and feel comfortable. However, everyone is different and what works for one may not work for another. :)
Good luck!
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:welcomesign; If you have any problems or questions, this is the place to come for answers and support! Best of luck with your training!
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Rookiegirl Angela is right. I think if you can do without the daytime fills you will feel fine. Ask to go dry during the day and say you want it assessing after a couple of months with an adequacy test. This will tell whether you are getting enough dialysis and if all is OK and you've not been getting swollen from fluid there's no reason why you shouldn't be able to carry on having dry days. As for the training. here in the UK they show you both manual and cycler dialysis in 5 daily training sessions. I don't know why they can't do that elsewhere.
Good Luck and any questions just ask, and don't worry if you have any initial problems with the cycler. We've all had them and thankfully for most of us any problems soon sort themselves out. :cuddle;
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I have just had my first orientation to decide on what type of dialysis to do. My neph and nurses think PD is perfect for me, so I am learning all I can. (Thank you Goofynina and Rerun!) My center trains on manual and cycler both during the training period. Manual for when power goes out or traveling, etc. With hurricanes (the natural ones, not hockeye) we can lose power for a week. Thanks to all of you that are already on PD and are helping those of us be less afraid of the future :grouphug;
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:clap; So happy you decided PD Paris, i would hate the thought of you on hemo, i, personally, never had anything good to say about it other than it kept me alive another day (to which i am forever grateful) :bow; You know you are not alone in this, you have all of us behind you and beside you all the way :cuddle; :grouphug;
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I have just had my first orientation to decide on what type of dialysis to do. My neph and nurses think PD is perfect for me, so I am learning all I can. (Thank you Goofynina and Rerun!) My center trains on manual and cycler both during the training period. Manual for when power goes out or traveling, etc. With hurricanes (the natural ones, not hockeye) we can lose power for a week. Thanks to all of you that are already on PD and are helping those of us be less afraid of the future :grouphug;
Paris you chose right. I'm sure you'll do great on PD. Any problems just tell us and those of us on PD will soon give you answers. :cuddle;
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Thanks Ken. I know I can always count on you!
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Paris, so glad to hear you've chosen PD. As you know, almost all of us who do it love it (well, as much as you can love dialysis, anyway). Best of luck, and let us know how everything's going!
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Hi All. I was really excited to come across this website. I've been reading everyone's messages and I've learned so much. THANK YOU. I had my PD catheter placed on 10/05/07 and I start my PD training on 10/22/07. I have been feeling really depress. I can't seem to get use to the idea of this foreign object connected to me. On top of it all, my belly is all swollen and it is very comfortable to situp.
Rookiegirl, tell us how your first two days of training went. :cuddle;
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Sorry for the late response. First day I was nervous and somewhat disappointed. I had to do a 24hr urine collection and gave blood. The nurse told us my prescription is 10hrs, 4 exchanges, and 1.5 special solution 12-15hrs. I was really upset because I thought I would only do dialysis at night and be free during the day. I didn't do so good with the fill and drain time. During fill time it was o.k. but the dwelling, I was really uncomfortable. My sides hurt and I had a hard time breathing. First drain was painful too, I had fibrin that was clogging the catheter. I had difficult time with the cramping. The second fill they injected Heparin in my solution. When we broke for lunch, I couldn't eat. I lost 4lbs on the first day.
Second day. I was challenged. They gave me the 4.25 solution. Moving was difficult. Second fill was another 4.25 and I had to sit there for a while because moving was painful. Couldn't eat lunch again because of the full sensation. Draining was just horrible. I was told once my body become accustom to the fill and drain it will get easier. I really hope so. I lost another 2lbs today. Total ultrafiltration 1550.
Those that have gone thru this process, does the pain go away? Does the body really get use to the fill sensation? When I'm filled, my sides hurt and moving feels like someone is punching me hard on my sides.
Thanks,
Rookiegirl
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How about suggesting to the docs that you start with a reduced daytime fill, say about 1 ltr at a time. It's usually daytime fills which are the most uncomforable. Remember when you have the maximum fill from the cycler you are layed down which is more bearable and once you are asleep you wont be concious of it. From what I've read on this forum they seem to start people on the maximum in the USA whereas in the UK they build daytime dwells up slowly to enable your abdomen to adjust.
I had a few problems when I first started PD and I thought it would never improve but it did. I do hope things improve for you as I'm sure they will.
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Ken is right. I am shocked they started you out so much. YOU are in charge. It is much easier on your body to build up to it, not to challenge it. Start with the lowest number possible bag, and with the highest level of fill that is comfortable for you. I started out with 500mls and worked up to the full 2000mls on manuals, it's different now, on the cycler, I have more in the evening and less during the day.
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Today was my 3rd day in PD Training. I didn't sleep last night. I was up crying because I just don't think I can do PD. I really want to give it a try but it's so hard because of all the discomfort and pain. This morning I sobbed to my nurse my concern. I wanted to know if they can change my prescription to do my exchanges at night and have my day free (dry). My nurse understood and would make a phone call to my doctor. Unfortunately, my doctor is in China and won't be back until 2 weeks. I'm suppose to start the 4 exchanges this Friday night. I really don't look forward to it.
Today in training, we did 2 exchanges of 2.5. Again while dwelling, I felt like my abdomen was going to explode. When we broke for lunch, I ate two bites of my sandwich and few sip of water. I could feel my sides expanding when I tried to eat and drink. When I walk a wabble like a duck and my back starts to ache.
After training, I was so excited :yahoo; to leave from there. When I got home, I finally ate. Right now, I'm feeling really good except for the sore incision that is still healing. It's only been 3 weeks since my surgery.
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I know it is hard but believe me, it will get easier for you, especially with the cycler, I hope your pain eases up and allows you some comfort before, during and after your dwells. Sending good thoughts and prayers your way :2thumbsup;
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Hi Rookie girl.
Are the exchanges 2.5 ltrs or 2.5% solution? The solution comes in different strengths and are colour coded. Starting off with fills of 2.5 litres is a HUGE amount of fluid.
I am on APD (cycler) with three overnight fills of 1500mls (1.5% solution) with a last fill that is exchanged manually in the afternoon. Again it is only 1500mls (1.5% solution). I carry fluid all the time. During the first few weeks of training it was really hard. I ultrafiltrated high amounts every exchange also and by the time it was due to come off I was in a lot of pain. I found it difficult to eat and usually vomited. This only lasted the first ten days or so, after that we worked out the smaller fill volumes were better. Also at the start you tend to have a lot of fluid to take off. Your body will adjust and the fluid levels will balance out. Everyone is different so everyones prescriptions of PD differ. It also depends on the unit you are with. By doing a manual exchange during the day I am getting more dialysis, which in the end is better for me. Although I wasn't given a choice. But I prefer to do a manual exchange and keep my fills to 1500mls, than have to increase the fill volume and feel sick.
Dialysis sucks and there have been plenty of days when I have felt I can't do this anymore. I have also thought that Haemo would be better. But if you read all the posts of those that have done both most agree PD is the better choice.
Give yourself time to adjust to the routine of PD and it will all settle down. Please keep posting any questions you have. :cuddle;
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Evening Everyone,
4th Day of Training: I did 2 exchanges of 2.5% green tab which has 2000mls. First dwell was not too bad. Second dwell was still more discomfort. Both drain time was HORRIBLE!!!! You see I drain so well and by 10 minutes into the drawn I start to feel that devilish pain. It feels like labor cramps that comes and go. I can handle the hovering cramp which feels stronger than menstrual cramp. But that strong pinching feeling I can't handle. So, I asked my nurse if we can close the transfer set half way. IT WORKED!!! Slowing down the gravity pull took that strong pinching pain. The cramping was still there but I was able to tolerate. If I had to measure my pain like how they ask you in the hospital, the pinch is 10++++++++++++++ and the steady cramping is 5.
I'm suppose to go on they cycler Friday night. I'm so nervous because of the drain time. I'm going to try to see if I can also turn down the flow on my transfer set. But the nurse told me the machine might alarm for low drain. I'm going to try it anyway. I HATE DRAIN TIME, HATE IT! HATE IT!
I really wish they could have started me off slow like some people on this site. But instead I'm starting of with nightly 10hrs. 3 exchanges and a 4th on of 1500mls of special solution that is slow pulling which last 12-18hrs. I start back to work this Monday. I don't know how I'm going to feel with this solution in me all day long. On top of this, I'm still healing from my incision and the exit site. My abdomen is already sore to start with and they start me on this strong 2.5% & 4.25% in training. I really hope and pray when my doctor return from China that he shows sympathy and compassion and change my prescription to allow me to be at least "dry" during the day.
Tomorrow is my last day of training. The nurse will do a home visit to make sure the room I use for my exchanges is appropriate.
Wish me luck and pray for me and my husband on our first solo dialysis.
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I think the only problem you may have with the cycler is if you close your port 1/2 ways at drain time, the alarm might go off, but then again, it may not, i hope you find something that works for you :waving;
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It's Friday (10/26). Finished my PD Training and made a 100% on my written exam/CAPD/CCPD. :yahoo; My husband is currently setting up my cycler and I will be draining in a few hours. They did 1 exchange of the 2.5%, drained, filled with a 1500mls of special solution that can dwell up to 12-18hrs. So I've been dwelling since 1pm today and will drain it tonight around 10pm.
Draining today on the 1st exchange was not too bad. :2thumbsup; I had my port turned 1/2 way and that seems to work. I'm really hoping tonight when I do my first drain on the cycler that I could do the same. Wish me luck.
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Congrats on completing the training, and passing that test ;) Good luck on your drains tonight, i hope all goes smoothly for you :2thumbsup;
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Good Luck tonight. I hope things go well. :2thumbsup;
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Let us know how you are. I still think you have way too much in you to start, darn it. :grouphug;
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WOW... I know what you mean about the pinching feeling. It was indeed uncomfortable but it did get much better with time. I also discovered that if I rolled unto one of my sides the pinching would subside. You will learn all sorts of little tricks that make the treatment better for you.
Hang in there. I'll certainly be rooting for you!!!
PS. I believe there is a convention in China because my nephrologist is there too.
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Good Morning,
Last night was my 1st on the cycler. Setting up the machine was a piece of cake. I started my initial drain and 10mins. after the drain that pinching feeling occurred. I closed my port 1/2 way & that took some of the pain away. The cycler did not alarm.
I only slept for 2-3hrs. last night. I was a nervous wreak because I fear the drain time. On the 1st exchange, the drain pain was tolerable. Thank God I don't remember the 2nd drain because when I woke up in the middle of the AM, I noticed I was already dwelling on my 3rd exchange. I couldn't go back to sleep. The 3rd drain was HORRIBLE! The pinching feeling was worst on the cycler than the manual. All this time my port was turned 1/2 thru out the night. I had to keep pressing Stop/Go on the machine to relieve me from the pain. The pinching pain hits hard then ease off. It was like 10-15 seconds apart. I know I sound like I'm in labor or something. Do you think it was worst for me because my port was not completely open? ???. I'm so scared to have the port wide open because of the pinching pain.
Also, my dwell time was uncomfortable. It was hard to breathe. It felt like I had an extra 500lbs on top of me. You see I'm not a back sleeper. I normally sleep on my stomach or my sides. I tried to reposition myself to the side but when I do, I can feel all that fluid moving to the side I want to lay on. The pressure of the fluid makes my sides and back hurt all night long. Several times I had my husband sit me up and that felt really good. I can actually breathe. I just don't know what to do at this point.
I don't understand my End Therapy Summary:
* Initial Drain was 1317mls. The nurse filled me with a 1500mls. of the special ICO solutions. Does this mean my body observed almost 200mls.? Or do you think it didn't drain all? Should I call my nurse today? I'm worried.
* Average dwell was 2:24. It should be 2:49 according to the machine when I first confirmed all my info. Is it because my fill time took longer when I kept my port closed 1/2 way?
* UF Total 823mls. I actually had a total of 4 exchanges. Shouldn't I have UF more? When I was in training, they did 2 exchanges and my average UF was around 800-850mls. What am I doing wrong?
I actually lost 4lbs. from yesterday and my blood pressure is lower than usual.
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First of all, congrats on your first night on the cycler! Second of all, it's not unusual to not sleep very well the first few nights. My sleep got a little bit better every night, but it probably took me close to a month to sleep all the way through the night after I started on the cycler. Just give yourself time and try to relax.
I don't understand my End Therapy Summary:
* Initial Drain was 1317mls. The nurse filled me with a 1500mls. of the special ICO solutions. Does this mean my body observed almost 200mls.? Or do you think it didn't drain all? Should I call my nurse today? I'm worried.
* Average dwell was 2:24. It should be 2:49 according to the machine when I first confirmed all my info. Is it because my fill time took longer when I kept my port closed 1/2 way?
* UF Total 823mls. I actually had a total of 4 exchanges. Shouldn't I have UF more? When I was in training, they did 2 exchanges and my average UF was around 800-850mls. What am I doing wrong?
I actually lost 4lbs. from yesterday and my blood pressure is lower than usual.
I have a final fill of 2000 in the mornings and carry that all day, and my first drain is usually between 1700 and 2100. From what I've been told, yes, we're probably absorbing some of the fluid. It's really not something to worry about, but try to watch your sodium during the day. I also allow myself to drink more because of it (I still urinate, though).
Yes, your dwells were probably shorter due to having it set at half speed. My cycler has a setting called "fast fill", and what that does is add or subtract time from the dwell depending on how long it took to drain and fill. I'm supposed to have 2 hour dwells, but they normally end up being 4-10 minutes longer than that. Again, nothing to worry about.
I've read on here (and also experienced it myself) that our drains are usually higher when doing manuals than on the cycler. Also, when you were in training at the clinic, you were probably sitting up for most of your drains, whereas at home, your laying down in bed. I believe the drain uses gravity, so you will drain more if you're sitting up than if you're laying down.
Hope all goes well tonight and you sleep better. Remember, just give yourself time to adjust and try to relax. :)
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I survived my 2nd night. This time my initial drain from my 1500mls ICO was 1674mls. Total UF from the 3 exchanges of 2000mls of 2.5% sol was 1235mls.
I was up for all 3 drains. The 1st & 2nd drain was tolerable. I took someone's advised from this site to raise my knees and have my feet lay flat on the bed. This seems to shorten the pinching feeling. The 3rd drain was more painful. More pinching.
Is it normal for the cycler to stop pumping and then restart? Close to the end of my drain, the pump quiets down and then start back up again. When this happens, it pulls harder and the pinching feeling becomes harder. Is this normal?
I still kept my port closed 1/2 way because I'm afraid that if I open it wide, the pinching will get harder. Do you know if this would be true? Does a wide open port make the suction harder? I'm afraid to try.
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Hi Rookie Girl! So sorry to hear you are having drain pain. I too had a heck of a time getting used to the pain. They put me on a tidal program, which helped quite a lot. This leaves a bit of fluid in, so you don't get quite as much tugging. The pain is because the drain works like a straw in an empty milkshake....suction on your inner stuff. It does get better! I am now going gradually back to full drains with very little or no pain. I hardly ever even wake up any more. I am on 2-2.5's and 5 drains a night for about an hour and 25 mins and on 1500 ml icodextrin during the day. Please don't give up. It gets better and is by far the easiest dialysis.
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Hi Rookie Girl! So sorry to hear you are having drain pain. I too had a heck of a time getting used to the pain. They put me on a tidal program, which helped quite a lot. This leaves a bit of fluid in, so you don't get quite as much tugging. The pain is because the drain works like a straw in an empty milkshake....suction on your inner stuff. It does get better! I am now going gradually back to full drains with very little or no pain. I hardly ever even wake up any more. I am on 2-2.5's and 5 drains a night for about an hour and 25 mins and on 1500 ml icodextrin during the day. Please don't give up. It gets better and is by far the easiest dialysis.
Hi Red from Canada,
How do you tolerate the discomfort of the dwell time? I prop myself with 2 pillows and still the fullnest of the fluid causes my sides and back to hurt. When I try to shift from left to right, it becomes uncomfortable. The only way to relieve that feeling is to sit up. As time goes by, will this feeling ease off? If I can be comfortable during my dwell, I can probably get some sleep in between drain. There is no sleep during drain time.
:thx;
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Hi Rookie Girl., Perhaps your nurse would be agreeable to a bit less fluid or more frequent shorter dwells? I find that lying flat on my right side and wiggling a little shifts the discomfort. I never had dwell problems, only drains. Also, keeping "regular" is critical. Use your stool softeners and make sure you are clearing yourself at least once a day. That can cause a lot of pain if you don't. My nurse always told me to roll into the pain. It helps when you are new to it.
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Red from Canada,
Thank you for the advise about rolling into the pain. I will give it a shot tonight. I do stay regular so I don't think I have a problem in that area. I guess I just have to get use to laying down with 3-4lbs. of fluid. I hope as each night goes by, it will get easier.
Thanks,
Rookiegirl
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Hi Rookie girl. So sorry you'rrehaving these problems. I've never had problems with dwells but then again I had a large abdominal area even before dialysis The first fill does make me feel quite bloated but doesn't cause any pain. You must be tired of us keep on telling you it will get better but I'm sure it will. Don't give up.
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You know, I get the "pinching" problems that you're speaking of as well.... For me, it means that I've fully drianed and am now dry. That usually means that I can move on to the next fill. Do you think that could be it for you as well?
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You know, I get the "pinching" problems that you're speaking of as well.... For me, it means that I've fully drianed and am now dry. That usually means that I can move on to the next fill. Do you think that could be it for you as well?
I believe the machine is trying to suck out every bit of the fluid. Just like the solution bags. I'm to the point now that if I start to feel the pinch, I will just bypass the remaining of the drain time. I don't know how the PD Nurse will feel about it once they review my cycler card. I have tried repositioning myself and still the pinching still hurts.
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Rookiegirl. How's it going? Any improvement?
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I hope today is going better for you rookie girl.
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I'm having difficulty with low blood pressure. I was told to come in at the Dialysis Clinic on Tuesday. My blood pressure yesterday was 71/62 with symptoms of dizziness. They had to page my Dr. They took me off my BP Meds and not to do Dialysis Tuesday night and Wednesday (all day) :bandance;. They also change my ProCard to do a tidal volume of 250mls. for each my exchanges. Hopefully this will ease the pinching pain. The ICO that I carry all day have been change from 1500mls to 1000mls. Oh boy, I was so excited when they told me I would get a break. I slept so good last night, I didn't want to get up.
Has anyone been on a "Tidal Volume"? I'm scared to absorb that 250mls. If so what will happen to me? Will this make me sick, fat, etc...?
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I dont think absorbing that much would make too much of a difference but if it does, i am sure you will notice swelling in your ankles and/or face. Good luck, i hope it works out for you :2thumbsup;
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I COULDN'T DO IT!!!
Wednesday night - I couldn't sleep. The pinching/cramping of the drain kept me up. I also started cramping during the fill. This has never happen. I cried in between 3 exchanges.
Thursday - I went to my weekly followup at the Dialysis Ctr. I had to get another Iron Infusion. I told the nurse about the pinching/cramping. They told me this will get better in time. 2hrs later, I ran a fever 100.5 and couldn't stay warm. I called the nurse. She said this may be a reaction from the Iron Infusion. I was told to take Tylenol and keep a watch. If the fever doesn't break, I was told to go to the emergency room. Thank God, the fever broke around 8pm. This is when I start my night therapy. My first initial drain took almost 45mins. because I kept stopping the machine. I couldn't tolerate the drain pain. My first fill was also uncomfortable. It cramped as the fluid entered my belly. I even turned down my port 1/2 way. The fill cramp didn't stop until it was complete. After 3 hrs. it was drain time (12:00am). I must have fallen asleep between 9-12 because the pinching woke me up at midnight. I kept stopping the machine again. Then finally, I couldn't take it anymore. I hate to say it, I'M A QUITTER!!! :banghead; I discontinued my remaining therapy and did a manual drain for the remaining of the fluid which was about 400mls. Afterwards, I just went to sleep.
Friday - Woke this morning and did a manual exchange. Called the nurse to see if I can do CAPD instead of CCPD. They had to page my Dr. Offcourse, my Dr. is out of town again and the nurse spoke to the Dr. on call. He said this will be okay for the weekend. But come Monday, they will need the okay from my Dr.
I really feel I can tolerate the manual than the cycler. On the manual, it still cramps but it doesn't pinch hard. When I turn my port 1/2 way this helps a lot. But on the cycler, even when I turn the port down, the pinching never stops.
I don't understand why it would not be okay to switch from the cycler to manual.
I'm feeling really low right now. I feel as my spirit is broken. I feel as I have given up. I know I need this to stay alive, but it's so hard to be positive when I'm in so much pain. I try to find my motivation to keep me going, but all I can think of is the discomfort. I just feel like a big failure.
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Rookiegirl, I know excatly how you feel. Everything you describe is the exact same thing I experienced. I tried the cycler for about a week and decided it was not for me. The company came to pick it up yesturday, and I was glad to see it go.
I am now doing manuals and I found that if I sit on the floor when draining I have no pain. Maybe you could try it and see if it helps you.
Good luck and I hope things get better for you. :grouphug;
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RookieGirl, you are NOT a quitter. You tried it, it did NOT work for you. Heck, I give you kudos for sticking it out for as long as you did. You tried it, it's not for you.
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Rookiegirl, don't be so hard on yourself. As someone said in another thread, the fact that you're doing dialysis at all shows you're no quitter! I have the same pain you've described (though not as intense, I don't believe), and I've thought about quitting several times. Sometimes the only thing that kept me going was thinking about how much I HATE hemo! You'll find the modality that works for you, and you'll feel much better.
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Rookiegirl, you are no quitter my friend, remember that!!! I am just sorry your experiencing so much pain, i hope they really look into what could be causing it and hopefully it is something they can fix. Hang in there and remember we are here for you and we support whatever decision you make ;) :cuddle;
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Thank you all for much encouraging words. As I read all of your response, I couldn't help but cry. It's so wonderful to have you all in my life for support. I know I can always go here to find comfort. :thx;
Today has been a GREAT day for me. I took the day off from work. I spent the morning resting. My drain from my 1st exchange was almost painless :yahoo;. Second drain was not too bad (few cramp). Made it to my daughter's Senior Night Football game. She is the drum major in the marching band. I finally got to see their 2007 showcase. They were so awesome. Now I see why she so much deserved her 1st place Drum Major Class 3A. I was so proud. I almost forgot I was on dialysis. For once in a long time, I felt normal.
I was only able to stay after the performance. The stands are just not comfortable to sit on. Plus, it was freezing cold.
Tomorrow will be another wonderful day. IT'S MY 37TH BIRTHDAY!!!! I'm going to a party!!!
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Happy Birthday rookiegirl. Many more to come.
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:birthday; Happy birthday rookiegirl!!
Hope it's a great one! :beer1;
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Thank you for all the Birthday wishes.
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I've been out of town and missed the last few comments. Glad you finally got to see your daughter's performance, and Happy Birthday!! Hope it was great!
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:birthday; Rookiegirl you deserve a medal for the way you persevered with the cycler so lets not hear any more talk about something you are certainly not, a quitter! I'm glad the manuals are suiting you better. One thing to bear in mind is that if the lesser amount of pain with manuals becomes even less over time or better still none at all, it could indicate that your peritoneum has adjusted and it might be worth re-trying with the cycler. Best of Luck
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Hi Everyone,
Sorry I've been quite for a few days. I've had some ups and downs with my blood pressure. Can't seem to find the right level. I called my Dr. office about wanting to have a meeting with him. I was able to see him today. He pretty much knew what was going on with me, especially the pain. I told him I still have cramping pain with the manual. Normally within 10 minutes of the drain. In the last 2-3 days, I've noticed that I also have pain during my fill. The cramping runs down to my buttocks and stays there for at least 30 minutes after the fill. This has never happened before. He asked me if I was constipated. I told him that I'm pretty regular. So he suggested even though I'm regular to take stool softener daily. My therapy changed again. This time I will only have to do an exchange of the 2.5% at bedtime. Drain in the morning and do another exchange of the ICO. I won't have to drain that until I'm ready to go to bed. He wants me to leave in some fluid to avoid the cramping. So 2 exchanges per day along with 25mg of Cozaar for my blood pressure. Will see how things work out.
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I wanted to get advise for those that still work a full time job. You see, after my dialysis training, I went back to work the falling week. It was very difficult because of my blood pressure, the discomfort of being full, had difficulty walking. I have to walk almost 2 blocks from the parking lot to my building. I'm a Revenue Analyst which pretty much is a desk job. But, I'm having a hard time concentrating on my job. I was only gone for 4 weeks and my accounts are not doing so good. I feel so pressured with all the calls, questions, emails pertaining to my accounts. I wish I could tackle it one thing at a time, but unfortunately with this type of job, you pretty much have to multi-task. Everyday I come home worried I'm going to loose my job. I took 4 weeks short term disability, but I wish I could take longer. I wish I had another month to get use to my dialysis. I can't really get use to it because each week it changes. In the last 2 weeks, my dialysis prescription changed 3 times.
I'm thinking about quitting so I can take a few months off. I'm scared because we really need the money. I have a 17yr. old daughter that will be going to college next fall. We have some money put aside but not enough.
It's bad enough having to deal with my illness and all the complication associated. Now I'm starting to worry about our finance.
I guess my question is how do you manage dialysis, family, work, social life????
:thx;
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Hey Rookiegirl, I know you said you wanted advice from someone who is still working (and although i am not) I just wanted to let you know that you are not alone with these fears, thoughts, unanswered questions. I had to let my kids go (i ran a day care) and move in with my mom, we lost our house (well, we moved out, it was a rental) but still, it felt like MY home. You have to learn to make sacrifices, cut corners when and where you can and make changes. I know you dont get nearly as much on SSDI as you would if you were working but it is still an income, have you thought of going on SSDI? All the things you are worried about are doable if you just rearrange your life a little bit to accomodate what is going on in it now. Good luck to you and remember, you are not alone :cuddle;
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Goofynina,
Thanks for the advise. Sorry to sound dumb, but what does SSDI stands for?
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Your not sounding dumb my friend, SSDI is Social Security Disability Income
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Could I qualityf for something like that? Do you know what are the requirements? Where can I learn more about SSDI?
Thanks,
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Anyone on dialysis should be approved, there is a 5 month waiting period i believe (starting from when you first started dialysis) All you have to do is call your Social Security Office and make an appt. and they should set you up with an interview (usually it is a phone interview at first) But it is something you should definetly check into. Good luck and dont hesitate to ask any questions ok, we are here for ya :2thumbsup;
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Thank you so much for the information. I will definitely look into it.
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Hey rookiegirl,
Your social worker at your clini should be able to help you out. She should have already talked to you about this. That was always
one of the first things my social worker did. We need to make sure that you guys have the money you need to buy things like....
I don't know, maybe your meds and some food would be nice, too.
kruep
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I worked full time after finishing my PD training. I did that for seven months before I had other medical problems. Most people I had contact with did not even know that I was on dialysis. I taught computer classes so I was on my feet for a good part of the day but I could not say that my job was physically demanding.
The medical problems I had caused me to lose my PD catheter and I had to go on in center hemodialysis. I was able to arrange my schedule so I could start dialysis at 6:00 am and go in to work a little later. My employer was not opposed the the schedule. Hemodialysis however, was a little rough on my system and going to work after dialysis was a bit much so I went on short disability.
Each company has a different disability plan usually administered by some insurance company. Our plan allowed me to stay on short term disability for six months after which it changed to long term disability. The total disability span for our plan is one year. I opted to stay on disability so I also applied for SSDI. According to the way our disability plan was written the insurance company subtracts the amount I receive from my SSDI checks, or for that matter any other income I receive. You might want to check your employee manual or talk to your HR department to see what disability arrangements are available for you.
You might also want to consider a handicap placard for your vehicle so you can park closer. Handicap placards usually require a form or letter from your doctor and they are issued by your state DMV (Department of Motor Vehicles). In North Carolina they cost $5.00 for two and are good for over five years (might even be eight or nine years).
When you went on dialysis did you apply for Medicare? If not this is something else you will want to talk to your social worker about.
Best regards.
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Also ask your human resource department if they have you on any disability insurance. Sometimes it comes with the work insurance package. Have them sort it out for you.
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Hi Guys,
Thanks for all the advise. My Dr. agreed to let me take 6 more weeks off work. I'm back on STD with my employer. After the 6 weeks, my Dr. will re-evaluate my condition to see if I'm able to go back to work. My employer's STD plan is up to 26 weeks. After that goes into LTD. The wonderful thing about my STD plan is that I'm paid @ 100% because of my years of employment. Thank God.
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:rofl; So let me get this right, your employer gave you an STD?? (ok, sorry, bad joke) but it was there, i couldnt help myself :P ::)
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That's okay, I had it coming... ;)
I do have a question. Does anybody have side pain? It's only on my right side by my ribs. It hurts especially if I laugh, cough, or breath in deep. I can't figure out if I may have gas trap in that area. I'm pretty regular and I've been taking Colace each day to make sure things are moving along.
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It sounds as if you have air in you, the best thing to do is take tylenol for the pain and when you drain, try and drain with your bottom on a pillow, they say the air will flow upwards and out of your catheter, last time i had it (air) it was in my shoulder and the pain was so bad, took a couple of weeks but it finally got better, (dont know if it was the burp or the fart that did it but it was something massive) :o lol, sorry too much info there ::), but yep, that is what it probably is, good luck :2thumbsup;
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How can I avoid having air in me? How did it get there? I always make sure I flush my lines real good before I fill.
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Does anybody have side pain? It's only on my right side by my ribs. It hurts especially if I laugh, cough, or breath in deep. I can't figure out if I may have gas trap in that area. I'm pretty regular and I've been taking Colace each day to make sure things are moving along.
I have been having alot of pain in my right side, just as you described. I went to see a specialist today and he thinks maybe the catheter is tangled in my omentum. They are going to try and go in with a guide wire thru my catheter and see if they can reposition it. If not, I will have to have suregery to remove some of the omentum. Have you had an X-ray to see the position of the catheter?
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I have not had an X-ray. Dumb question, what is a omentum? I believe my cath is still position downward because at the end of my drain, the pinching/cramping occurs near my vagina. I really think my cath is too long for me to still have this much pain.
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Dumb question, what is a omentum?
I had no idea what it was either. The way it was explained to me is its a fatty piece that hangs down like a curtain from the stomach. ???
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It seems like the more I learn from all of you, the more I don't know! This thread is sooooo informative. Thanks everyone!
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(dont know if it was the burp or the fart that did it but it was something massive)
:rofl; :rofl; :rofl; :rofl; :rofl; :rofl; :rofl; :rofl; :rofl; :rofl; :rofl;
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Back up a minute----what is this talk about air bubbles?? Why don't they tell you all of this stuff while you are in the process of deciding on PD? What other fun things don't I know about yet? Don't hold anything back!
Thank goodness you are here to guide us through this minefield. :grouphug;
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Air bubbles. Fun and enjoyment. IF you don't flush the line out, or if you fill yourself up TOO quickly, you can get an air bublble, which usually lodges itself in your shoulder and HURTS. As Nina so eloquently put it, it's gotta come out somehow!!!
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Air bubbles. Fun and enjoyment. IF you don't flush the line out, or if you fill yourself up TOO quickly, you can get an air bublble, which usually lodges itself in your shoulder and HURTS. As Nina so eloquently put it, it's gotta come out somehow!!!
I really can't tell what is causing my right side to hurt. The discomfort feels like a sore muscle down my side. If I move a certain way it hurts worst or if I breath deep, laugh... I do CAPD now which I flush my lines real good and I fill real slow. I turn my port 1/2 way because if I open my port fully, I start to cramp down there. I have been gassy lately even though I go every day. Maybe I can take Beano or something.
I took Ms. Gooynina's advice about the prune juice. I my gosh! I only drank a little and sure enough, I went fast. I never had prune juice before this. I wasn't sure how I would react. Oh boy did I react. Anyway, I'm still bewildered about why I'm so gassy. This has never happened to me before.
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It sounds more as if you ARE gassy, I have that problem too. I just can't figure out what to do with it, I dont hurt, just um, burp and fart. Sorry. That's what I do. It can get embarrassing at times. I definitely do NOT have a problem holding anything in. Just the opposite. And I'm still gassy. Ick.
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when i had pains like that (in both shoulder and side on seperate occasions) they just told me to take Tylenol for the pain. when you do your drain, try and place your bottom on some pillows so that way the air bubble can roll its way up and out, i could never get it to work but that is what they suggested for me. Good luck ::)
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I goofed :banghead;. This morning when I did my morning exchange, I forgot to put on my mask. I was the only one in the room. I did everything right except after the connection, when I reached for my face, no mask. Oh my gosh! Should I call my PD Nurse? Could I have contaminated my set? I'm so angry with myself right now. Has anyone goofed before? What did you do?
HELP!
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Not to worry, Rookie Girl. I don't use the mask unless I have a cold or infection. As long as your hands are clean, you should be fine.
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You're okay, rookiegirl. What's good about pd is that you'll notice a difference if you got infected. Next to that you should be JUST FINE! Hang in there!
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Thanks. I feel much better now.
I have another question. It's been exactly 5 weeks since I had my catheter placed. Last week when I went to the clinic, I was told in a few weeks I can shower. I'm not sure about this because when I do my daily dressing change, I noticed that my cathetereter goes in and out of my belly. Is this normal?? I just figured if the cath slips in and out like that it means it's not completely sealed off. I'm afraid to get it wet if the cath is not sealed completely. I don't want to get an infection. There are little scabs around it but not much. I get so scared when my husband wipes it down with a wet sterile gauze and I see movement. I guess it's more my belly than my cath. Is your belly suppose to give like that? My hubby is really not pressing hard against my belly. I just don't know. Maybe I'm healing slower than others. How long did it take your exit wound to completely close?
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Do you mean the tube itself is moving in and out? Where are the cuffs? We have two cuffs on our tubes, to keep them in our belly (they act like velcro). I had a replacement tube put in 3 weeks ago. I took showeres about 2 days after surgery. I was NOT gonna do without!! As long as everything is weiped down with sterilizers (special soaps), then wiped and dried with gauze, the covered, if wanted, you should be fine.
I agree about the mask, unless you have a cold/flu, you should be fine. Be more concerned about your hands. I keep hand cleanser by the cycler so I can always stop and use it before moving to the next step.
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Rookiegirl, i remember i worried about the same thing, the catheter going in and out of my belly, mine still kinda sorta does, :P
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Do you mean the tube itself is moving in and out? Where are the cuffs? We have two cuffs on our tubes, to keep them in our belly (they act like velcro). I had a replacement tube put in 3 weeks ago. I took showeres about 2 days after surgery. I was NOT gonna do without!! As long as everything is weiped down with sterilizers (special soaps), then wiped and dried with gauze, the covered, if wanted, you should be fine.
MyssAnne,
Are the cuffs internal? I should have them I guess???? It's not really the tube, it's more like my belly skin around the tube slipping in and out.
As for the "special soap", do you still use it even long after your 6 weeks? After you take shower, do you use that special soap to clean it completely? Can I purchase this special soap in a regular store (pharmacy)? Right now, I have a bottle from what the dialysis clinic gave me.
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Rookiegirl, i remember i worried about the same thing, the catheter going in and out of my belly, mine still kinda sorta does, :P
Goofynina,
So the skin around your tube still moves? Do you ever have any discomfort? How about infection on your exit site? Reason for so many questions is because since I changed my dressing last night, I woke up this morning with a little discomfort around the site. I don't think it's infected because it looks normal. Maybe it's healing?
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I have always had discomfort around the exit site, it is just a sore feeling, i dont know if it is cuz i am removing the scabs from it (with a q-tip) or what its from, but they check it everytime i go in and they say it looks great, i dont cover it at all and i havent covered it for over a year and (knock on wood) so far so good ;) ;)
I push down the skin around the catheter and that leaves a little extra exposed, that is usually how i clean the scabs off of it ;D
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I have always had discomfort around the exit site, it is just a sore feeling, i dont know if it is cuz i am removing the scabs from it (with a q-tip) or what its from, but they check it everytime i go in and they say it looks great, i dont cover it at all and i havent covered it for over a year and (knock on wood) so far so good ;) ;)
I push down the skin around the catheter and that leaves a little extra exposed, that is usually how i clean the scabs off of it ;D
You mean to tell me even after a year, your site still create scabs? How come? You are right, the discomfort I'm feeling is soreness. How long does it take for the site to completely heal and close?
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Mine has never completely healed and closed, maybe cuz i keep picking off the scabs huh? lol, :urcrazy; but yes, it does still create scabs, if i accidentally bump it too hard or pull on it, there is a little bleeding and then VOILA, ya got a little scab, :D No worries, just stick with us kid ;) and you'll be just fine :waving;
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I'll be using the special soap til my nurse says I don't have to, probably when it heals. I HAVE been told I can use neosporing around the exit site and cover it with gauze, if it seems to need it. Otherwise, I ussually do as Nina does, and just let be uncovered. You'll figure out what is comfortable for you.
And yes, the exit site can go back and forth, not only in motion, but also with the 'healing' process. It's quite possible to still have scabs after a long period. Just pull them off with a piece of gause or a qtip, then if it seems to need it, some neosporin.
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You should be okay. It'll move a little bit, but I do know that there are TWO cuffs inside of you that is keeping the tube from slipping out completely. Maybe you can do what I do. If you're concerned about tugging and moving, try taking a small piece of tape and taping your tube to your body about an inch from the exit site. What this will do is prevent any tugging at the site. If you accidentally tug, it'll tug at the tape rather than at the site. This will prevent your tube from being pulled too much. You'll have to change the tape a couple times a week, but it really works well. It did for me at least. I've gotta admit, it took my tube a while to heal. However, when I showered, I just covered it, then cleaned it and spread gentamycin (prescribed cream) on it to prevent infections. Good luck with it! :-)
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However, when I showered, I just covered it, then cleaned it and spread gentamycin (prescribed cream) on it to prevent infections. Good luck with it! :-)
What did you use to cover your site and along with the extend catheter when you shower? ??? I really don't feel comfortable about letting it be exposed. I don't know what to use in order to cover the entire catheter. Once they give me the O.K. to shower, I would be too scared to get it wet.
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I have never covered it in the shower rookiegirl, you have to clean it with antibacterial soap anyways. :2thumbsup;
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However, when I showered, I just covered it, then cleaned it and spread gentamycin (prescribed cream) on it to prevent infections. Good luck with it! :-)
What did you use to cover your site and along with the extend catheter when you shower? ??? I really don't feel comfortable about letting it be exposed. I don't know what to use in order to cover the entire catheter. Once they give me the O.K. to shower, I would be too scared to get it wet.
Your supposed to get it wet... your supposed to clean it with anti-bacterial soap while in the shower, then pat it dry with some gauze or it's own towel.
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Yup, what they say. Leave it exposed in the shower, then AFTER the shower, use the antibacterial soap to do some extensive cleansing. From then on, it's what yuo are comfortable with, belting it, taping it, or what I do....sticking it between my bra and letting it fall over so it's loose under my shirt, but controlled.
And yes, there are two cuffs INSIDE you, that act as 'velcro', attaching the tube to your inside so it doesn't come out. That's why I had to do the replacement surgery, it was out one cuff and I was getting infections around the site.
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Your supposed to get it wet... your supposed to clean it with anti-bacterial soap while in the shower, then pat it dry with some gauze or it's own towel.
I use clean dry face washers as my exit site towels. One use and in the wash it goes.
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Thank you all for the advise on the exit site.
I'm currently still changing my dressing on a daily basis until my 6 weeks is up. I'm hoping in the next week or two I can shower. I wish I could get my hands on a water proof gauze that is big enough to cover the entire site along with the catheter.
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I use antibacterial soap in the shower on both the exit site and the catheter, then let them both air dry afterward. I don't cover them during the day, and haven't since about six weeks after getting my cath. I do tape the catheter into place to prevent tugging, though.
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IF you feel comfortable, I would go ahead with the shower. Since your changing the dressings anyway, why not? I've been taking showers since the 2nd day after my surgery, and just chaning dressings.
As long as you use antibactial soap AND pat it dry with its town towel or gauze, you should be fine.
But again, whatever YOU are comfortable with.
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IF you feel comfortable, I would go ahead with the shower. Since your changing the dressings anyway, why not? I've been taking showers since the 2nd day after my surgery, and just chaning dressings.
As long as you use antibactial soap AND pat it dry with its town towel or gauze, you should be fine.
But again, whatever YOU are comfortable with.
Wow, your Dialyisis Nurse said you can shower even only 2 days after the surgery? WOW! Clinics must have their own rules and regulations. They told me I can't get it wet in the shower until after 6 wks. They gave a bottle of the special soap to clean the exit site. MMMMM. I'm really curious to why they restrict me so much.
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I wish I could get my hands on a water proof gauze that is big enough to cover the entire site along with the catheter.
You can. For swimming I am supplied with a waterproof transparent dressing called Tegaderm. Its 10x12cms. I use one to cover the exit site only, then I curl the catheter up and place another one over the whole area. Its made in the USA by 3M Health care.
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I wish I could get my hands on a water proof gauze that is big enough to cover the entire site along with the catheter.
You can. For swimming I am supplied with a waterproof transparent dressing called Tegaderm. Its 10x12cms. I use one to cover the exit site only, then I curl the catheter up and place another one over the whole area. Its made in the USA by 3M Health care.
I did find Tegaderm in my local pharmancy. It comes 4 in a box (4x4 inch). I purchased 1 box even though it was causely ($15). I haven't use it yet.
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I swam all summer and didnt cover my site once, BUT, i did swim in a privately owned pool and when i got out, i showered and cleaned the site with anti-bacterial soap (some of the time) :P
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The one time I swam this summer it was in a very good friend's pool, who I KNEW would keep it very clean, etc. I only stayed in a short time, and I covered everything with tegaderm, then changed back into my dry clothes very quickly after getting out. I'm sorry to say I did not think of showering when I got out. No problems from it, though.
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O.K. I have to complain on two issues: >:(
1) I called my PD Nurse yesterday about when I can actually shower. I didn't realize until now that my 6 weeks is up since they placed my cath. So I asked them, "can I go ahead and shower". I was told that I would need to come in and have my exit site examined before they can "approve" the shower. So they asked, when is my next clinic visit. I don't go until Dec. 4th. Now I have to wait 2 more weeks.
So, being a hard-head >:D. I wrapped my exit site using the Tegaderm and I showered for the 1st time in 6 weeks. I was in the shower for at least 20-25 minutes. It felt so good. I'm so tired of cloth baths, its driving my skin crazy. :urcrazy;
I can't keep wrapping the site everyday because Tegaderm is very very expensive (4 for $15).
2) I can't believe my PD Nurse did not tell me about Baxter's regulations about picking up un-used supplies. I started of on the cycler doing 3 exchanges at night and the 4th one is the ICO. So Baxter delivered 2 weeks worth of supplies + what the clinic gave me. I was only on the cycler for 1 week because I couldn't tolerate the discomfort. So I'm now doing manual with new supplies delivered.
I was told by Baxter that I have to make arrangement with them to have the un-used supplies picked up and there is a charge for it. So now I'm stuck with 16 boxes of supplies that is occupying the little space I have for storage.
I called the PD Nurse and I was told to "cut it open and throw away". Are you kidding me! :rant; There are at least 6 bags in each box. What a waist!!!
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I have a question ???
For the last two nights, I have some cramping on my lower hip. I noticed if I lay on my right side, my left hip cramps and vise versa. I'm thinking it's because all the fluid rush into one side and it's heavy that it pulls on the muscle on the opposite side. I know it doesn't make sense. The funny thing is I have been switching sides for the last 2 weeks and I have never cramped before. So what I have to do is when I feel it, I turn to my back. I'm hoping it will not happen tonight.
Has anyone experience this type of discomfort?
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O.K. I have to complain on two issues: >:(
1) I called my PD Nurse yesterday about when I can actually shower. I didn't realize until now that my 6 weeks is up since they placed my cath. So I asked them, "can I go ahead and shower". I was told that I would need to come in and have my exit site examined before they can "approve" the shower. So they asked, when is my next clinic visit. I don't go until Dec. 4th. Now I have to wait 2 more weeks.
So, being a hard-head >:D. I wrapped my exit site using the Tegaderm and I showered for the 1st time in 6 weeks. I was in the shower for at least 20-25 minutes. It felt so good. I'm so tired of cloth baths, its driving my skin crazy. :urcrazy;
I can't keep wrapping the site everyday because Tegaderm is very very expensive (4 for $15).
2) I can't believe my PD Nurse did not tell me about Baxter's regulations about picking up un-used supplies. I started of on the cycler doing 3 exchanges at night and the 4th one is the ICO. So Baxter delivered 2 weeks worth of supplies + what the clinic gave me. I was only on the cycler for 1 week because I couldn't tolerate the discomfort. So I'm now doing manual with new supplies delivered.
I was told by Baxter that I have to make arrangement with them to have the un-used supplies picked up and there is a charge for it. So now I'm stuck with 16 boxes of supplies that is occupying the little space I have for storage.
I called the PD Nurse and I was told to "cut it open and throw away". Are you kidding me! :rant; There are at least 6 bags in each box. What a waist!!!
It is a waste! However, what I'm told is that NO ONE else can use those supplies once they are in your possesion and you've signed for them. Even if they came to pick it up from you, they will TRASH it once it reaches the warehouse. Maybe you can do what I have done. I "donated" my unused but still good boxes of solution to my dialysis clinic for training. They won't actually use these bags to put into people, but will use them as "expired" bags when they teach new students how to inject medicine into them and for teaching purposes when they show this to classes of people. My nurses took at least five boxes from me. This saves them money when they have to order more supplies.
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O.K. I have to complain on two issues: >:(
1) I called my PD Nurse yesterday about when I can actually shower. I didn't realize until now that my 6 weeks is up since they placed my cath. So I asked them, "can I go ahead and shower". I was told that I would need to come in and have my exit site examined before they can "approve" the shower. So they asked, when is my next clinic visit. I don't go until Dec. 4th. Now I have to wait 2 more weeks.
So, being a hard-head >:D. I wrapped my exit site using the Tegaderm and I showered for the 1st time in 6 weeks. I was in the shower for at least 20-25 minutes. It felt so good. I'm so tired of cloth baths, its driving my skin crazy. :urcrazy;
I can't keep wrapping the site everyday because Tegaderm is very very expensive (4 for $15).
2) I can't believe my PD Nurse did not tell me about Baxter's regulations about picking up un-used supplies. I started of on the cycler doing 3 exchanges at night and the 4th one is the ICO. So Baxter delivered 2 weeks worth of supplies + what the clinic gave me. I was only on the cycler for 1 week because I couldn't tolerate the discomfort. So I'm now doing manual with new supplies delivered.
I was told by Baxter that I have to make arrangement with them to have the un-used supplies picked up and there is a charge for it. So now I'm stuck with 16 boxes of supplies that is occupying the little space I have for storage.
I called the PD Nurse and I was told to "cut it open and throw away". Are you kidding me! :rant; There are at least 6 bags in each box. What a waist!!!
It is a waste! However, what I'm told is that NO ONE else can use those supplies once they are in your possesion and you've signed for them. Even if they came to pick it up from you, they will TRASH it once it reaches the warehouse. Maybe you can do what I have done. I "donated" my unused but still good boxes of solution to my dialysis clinic for training. They won't actually use these bags to put into people, but will use them as "expired" bags when they teach new students how to inject medicine into them and for teaching purposes when they show this to classes of people. My nurses took at least five boxes from me. This saves them money when they have to order more supplies.
I tried to give it to the clinic for training purposes. But, I was told they didn't need them, they had plenty and thanked me. I don't get it. Anyway, I will have to cut them and throw away.
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My nurse "offered" to take my manual bags from me after I started on the cycler, but I have/had two problems with this:
1) I or my insurance have paid to get these supplies from Fresenius, why is the only way I can get rid of them (other than throwing them in the garbage) to donate them back to Fresenius?
2) I had about 25 cases of bags (100 bags total) left of manuals, and I drive a Honda Accord, and I live 45 minutes from my clinic...do you know how many trips that would take to get all of them over there?
Quite a generous offer. :sarcasm;
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I KNOW THIS IS AN OLD THREAD! :rant; But I wanted to chime in to what KT said. Len also went through Fresenius doing home-hemo. When he got his transplant, the home nurse was in a big hurry to come pick up the machine and supplies. We had the old 2008H and an RO that was older then dirt. We (our insurance had already paid for the month of September) had just got a huge supply order 3 days before Len's transplant and it frosted my butt that the clinic was going to turn around and bill someone for it, when they got it for free. I still have 12 vitals of EPO in my refrigerator, I refuse to give it to them. I'll wait until it expires and throw it away. I know, that's terrible of me. :rant;
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Marvin and I trained for home hemo last summer with another couple. When the other man got a transplant just three months later :yahoo;, the other couple called us (though we met for the first time at the training, we became close friends and kept in close contact). DaVita came to his house and picked up his machine, centrifuge, and fax machine. They said they couldn't take any other supplies (and this guy had just received two months of supplies -- gauze, tape, alcohol wipes, gloves, saline, dialysate, SAKs, purification PAKS, etc., etc., etc. the day before he got "the call"). The supply companies -- Baxter and NxStage -- said they wouldn't take them back. This guy said, "I haven't even opened the big boxes, much less the individual supplies." Everybody said, "Nope! The boxes came into your home, and we can't take them back. Throw them away."
So, the other couple called Marvin and me and asked if we wanted to meet for lunch that week-end. We met them, and they had their car FULL of extra supplies for Marvin. We took every bit they had. That gave us extra of everything, and we were so appreciative.
I'm guess I'm asking, "Is there a way to 'share' with another dialysis patient who could use 'extras' without going through the company or the clinic?"
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Marvin and I trained for home hemo last summer with another couple. When the other man got a transplant just three months later :yahoo;, the other couple called us (though we met for the first time at the training, we became close friends and kept in close contact). DaVita came to his house and picked up his machine, centrifuge, and fax machine. They said they couldn't take any other supplies (and this guy had just received two months of supplies -- gauze, tape, alcohol wipes, gloves, saline, dialysate, SAKs, purification PAKS, etc., etc., etc. the day before he got "the call"). The supply companies -- Baxter and NxStage -- said they wouldn't take them back. This guy said, "I haven't even opened the big boxes, much less the individual supplies." Everybody said, "Nope! The boxes came into your home, and we can't take them back. Throw them away."
So, the other couple called Marvin and me and asked if we wanted to meet for lunch that week-end. We met them, and they had their car FULL of extra supplies for Marvin. We took every bit they had. That gave us extra of everything, and we were so appreciative.
I'm guess I'm asking, "Is there a way to 'share' with another dialysis patient who could use 'extras' without going through the company or the clinic?"
I guess I could if anyone wants them. The only supplies I have are the cycler solutions, cassettes, drain lines.
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W&W, several years ago, after my H&H stabilized after my second transplant, I had about 15 bottles of EPO left (someone at the mail order pharmacy had screwed up and sent me a year's worth instead of a month). ANYWAY! The doctor's office could not accept it for some reason, but my mom was volunteering at a free clinic, and she took it with her one day. They were SO grateful to have it! That stuff is liquid gold, and is used for chemo patients in addition to dialysis. You may see if there's a clinic like that in your area that could use it.
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Where did the time go??? I can't believe it's been 1 year since I started PD. I read through this old thread of mine and noticed how much have learned, grown and accepted this method of treatment. I owe so much to all of you for your kind words, support, encouragement and knowledge. I'm so glad I joined this group because without you all, I don't know if I could have tolerate being on dialysis. Just being here gave me the incite on what to ask my Neph and PD Nurse based on what others have experienced. So I thank you!!!
:flower;
Rookiegirl
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Rookiegirl posts like that highlight just how successful this forum is and how precious it is to us as dialysis patients.
I am so thankful to our founder Epoman for the legacy of love and friendship from the seed he planted in starting this forum. And also to our moderators who run the site and must spend a considerable amount of time and effort maintaining it.
It's also very satisfying to know that we have all helped each other from time to time whether it's giving comfort and support or information and even a large amount of humour. :grouphug;