I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Pre-Dialysis => Topic started by: Shaks24 on August 28, 2013, 06:11:01 AM
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I have been feeling real bad lately. A lot of the symptoms that many brave souls have posted about on various threads on this site. Going to see my Neph this morning and have labs done again. My inner being tells me it may be time to gear up for dialysis. I am hopeful my Neph is supportive of home PD and that I am a good candidate for that modality. Wishing you all the best and hoping that things go well today. God Bless.
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Shaks, let us know how thing went today.
:cuddle;
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I hope today turns out better than you expect. All the best wishes I can send. :)
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Do you have any news yet Shaks?
All the best, Cas
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Thank you all for your kindness. My Neph basically told me I should start dialysis to feel better. We will not have lab results until tomorrow. He is setting up a meeting for me with a dialysis clinic and helping to set up an appointment with a surgeon for PD Catheter placement. I have to do something to feel better. My legs and arms are cramping, my mind is in a deep fog and I wake up feeling extremely nauseated every morning. Also I have been living in a state of extreme anxiety for the last few weeks. I am sure these symptoms are kidney related. Lab results tomorrow should confirm. I was hoping it would not come to this so soon but in the end, it is what it is. I hope PD works well for me. Again thanks for listening to me it helps a lot to hear from you all. I have never had surgery before so I am a little bit apprehensive.
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You will do great shaks! I don't have experience with PD, but do home hemo. I can relate to all of your symptoms prior to starting D. I felt so lousy for so long that I forgot what it was like to be "normal". Once I started, the worst of my symptoms went away. Almost no nausea, no cramps and even my brain fog lifted! Hope everything works out for you. Keep us posted! :cuddle;
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Good luck to you Shaks, hope it all works out well. I am close to your position myself and even tho I knew it was coming, have tried to ignore it.
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good luck. You should feel better within a few weeks of starting.
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Thank you all again for your comments. Does anyone know what PD Catheter surgery costs. Due to pre existing conditions my insurance options have been limited and I have a junk policy that basically covers nothing. I know if I do home PD medicare should kick in on the first month. I am just curious as to what this surgery may cost.
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Shaks24 Unless you can wait a month to start dialysis, ( the time it will take for the PD catheter to be usable and your training) they will put in temp catheter in your neck. So, be sure to talk to your Neph about this. Grumpy
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My pd catheter worked straight away, so it depends on surgeon, and person.
I hope you get your $$$$ info soon, and wish you an awful lot of luck.
Love, Cas
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My kidney function is actually improved slightly at 21%. I however have been feeling horrible for the last 3 or 4 weeks with classic ESRD symptoms. My Neph suggested starting PD to get to feeling better and scheduled appointments with a surgeon and a PD Clinic to start training. Is it crazy to start at 21% function? From reading on this site it seems as though most start at much lower kidney function levels. The meeting with the surgeon this Thursday is just a consultation to schedule PD catheter placement.
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Are you on a low protein diet? I avoided dialysis for 5 years using Dr. Walzer's book and amino acids, but to tell you the truth, I felt horrible until I started dialysis. Of course, dialysis is no picnic. I did hemo for a year before I went to CAPD. Hemo is 3 times a week for 4 hours. CAPD is 10 hours every night. I prefer CAPD.
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My kidney function is actually improved slightly at 21%. I however have been feeling horrible for the last 3 or 4 weeks with classic ESRD symptoms. My Neph suggested starting PD to get to feeling better and scheduled appointments with a surgeon and a PD Clinic to start training. Is it crazy to start at 21% function? From reading on this site it seems as though most start at much lower kidney function levels. The meeting with the surgeon this Thursday is just a consultation to schedule PD catheter placement.
Gosh, you can't even get on the transplant list with a gfr of 21! So I am very dubious about starting dialysis quite this early. I spent 10 years with a gfr of low 20s. How are your other labs? Potassium? Phosphorus? Are you anemic?
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Thank you all again for your comments. Does anyone know what PD Catheter surgery costs. Due to pre existing conditions my insurance options have been limited and I have a junk policy that basically covers nothing. I know if I do home PD medicare should kick in on the first month. I am just curious as to what this surgery may cost.
Costs should be the least of your worries, although that's easy for me to say living in a country where medical care is free. Your gfr sounds a bit high to be starting dialysis, although the symptoms toward the end suck so bad you actually want dialysis to start so you can feel better, which you will do. Surgery is no biggie. I hope that this next little period goes quickly for you. Once you're on dialysis, you'll be in a much better place than you are now. Good luck.
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Thanks Mr Pink. I have been feeling horrible. I met with a surgeon today and I am scheduled for PD Catheter placement and fistula(for back up) next Wednesday at 8:00 am. I have never had a surgical knife touch me before. I am a surgery virgin! LOL. In America, unfortunately healthcare is a major financial concern if you can not even purchase adequate insurance as in my case. Thank goodness for the Medicare ESRD program.
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Don't forget that what is (usually) reported as GFR is actually an estimate based on creatinine (unless they happened to actually measure your GFR). Creatinine is an indicator of kidney function, but it isn't a direct measure and it isn't terribly accurate.
If you are experiencing a lot of symptoms that need attention, that's probably more important than the number.
cheers,
skg
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Good luck to you on Wednesday! Be sure to report back. I hope you get to feeling better very soon and that dialysis works really well for you.
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Thank you all. I will report back. So far everyone I have talked to from the Fresenius clinic has been extremely helpful and nice. I am scared but looking forward to relief from the cruddy feelings.
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Good luck for Wednesday,
:flower;
Love, Cas
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Thank you Cas.
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It just dawned on me this coming wednesday morning will be my last shower for at least two weeks. I may have to change my user name to stinky. lol.
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I hope your surgery went well. Let us know how you are feeling! :flower;
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Hi Bambino. Typing on my samsung phone. Long day today. Up at 4 am to be at hospital at 6 am. Got the pd catheter put in and a fistula in my left arm. I am tired and a bit sore. My training nurse is coming to my home tomorrow at 2. The surgeries were not bad. Killed 2 birds with 1 stone. It was done under general anesthesia. Discharge paperwork said I could shower in 48 to 72 hours. Yay! I took 1 pain killer after leaving the hospital. I think that is all I will need. Let me know if you have any questions.
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I am glad that the surgery went well. Good luck with the home visit tomorrow. My husband has surgery Oct. 3. So you are a few weeks ahead of us in this journey. Keep me posted on how you are feeling. Take care! :cheer:
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New fistula is buzzing away.
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Glad to hear all went well,
Love Cas
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Shaks how is the pain today? Hope you are doing well.
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Best wishes to your new fistula!
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Still mild soreness. Broke down and took another pain pill last night. The pd nurse oked my home yesterday. I go to the clinic monday to have the bandages replaced and possibly the catheter flushed. So far fistula has good thrill. I can feel it when I put my finger near it.
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Still mild soreness. Broke down and took another pain pill last night. The pd nurse oked my home yesterday. I go to the clinic monday to have the bandages replaced and possibly the catheter flushed. So far fistula has good thrill. I can feel it when I put my finger near it.
A truly "THRILLING Experience".
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You bet Doc. I can't imagine going through the surgery only to have it DOA. I have read it happens quite frequently. I will plan to exercise this baby regularly and hopefully it will develop into a large functioning fistula for a back up on my PD.
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Wait 'til it starts buzzing in your neck. God, I hate that. So creepy.
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That does sound creepy. I wonder how long it will take for that to happen.
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Don't worry, that's a good sign ;D , it's also funny when reading a newspaper and a whole drumband sound comes out of it
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Too funny. I actually went into the surgery consultation thinking I was just getting a PD catheter. The surgeon told me it was a good idea to get a fistula too as the PD catheter could have issues with infection and what not. He sounded convincing so I went with getting both done at the same time. Now that I have both, I think it may save me being put under general anesthesia for a while. I hope! Or was he just selling?
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Couldn't answer that, I had my first peritonitis after a year or so, but did PD for 5 years in total. There's quite some people here who PD'ed for an awfull lot longer than that.
I started PD cos the 2nd fistula didn't work, but yours sounds booming. ;D
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Thanks Cas. I really apreciate all your thoughfullness and your experience. I go to the clinic tomorrow to have the surgery bandages replaced. If all goes well they plan to start me on the 30th. I can't wait to take a hot shower.
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I had both initially too. Switched to PD and about a year later the fistula closed up. Didn't worry too much about it until now. PD is now out the picture for me because of infections and now having to go to Hemo. New fistula will be in by the end of the year. Grumpy
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Got catheter flushed today. The nurse basically did off and on partial fills and drains out of a 2 liter bag of solution. Everything went well but I was told to hold off on showering for a few more days as there was a bit of redness at the exit site of the catheter. This coming Friday I start training and will do my first complete manual exchange.
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Shaks I am glad everything went well. Did the fill and drain feel strange?
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It was not bad at all. I did feel kind of bloated after I left the clinic even though everything was drained out. She never had the entire bag in me at once though. It was just repeated partial fills and then drains. I am ready to kill for a hot shower. Tomorrow makes almost 2 weeks.
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Sounds like it is going well for you stinky. Hate the thought of not showering. Egads, my hair!!! Good luck and I hope things continue to go well for you.
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Stinky indeed Jean! Even my two dogs want no part of me. Spounge baths at the sink and hair shampooing at the kitchen sink is getting old.
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Did first manual exchange today as today is my official start date. It went well. I also got cleared to shower. yipeee. Stinky no more after tonight. I was so nervous this morning I forgot to take my BP meds. Better late than never I guess.
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Good to hear things are going well. :2thumbsup;
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Thank you Aleta. I hope you and yours are doing well.
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Shaks, I think I told you before I am right behind you and am seriously scared to death. I really don't want the PD mess in my house, but at the same time, I hate needles and don't want to do that either. My neph is no help at all, he says it is too early for me to be thinking about dialysis, but at least he did send me to " dialysis school".I am more grateful than I can say to all the helpful people here at IHD> Please, keep us closely posted on what goes on with you.
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I will Jean. I understand your feelings too. I am starting with mixed feelings as my eGFR was not that low but symptoms were getting pretty bad. I have a full week of training this coming week and my first delivery of supplies on the 1st of October. I hope that your kidney function holds up and that you do not experience bad symptoms so that maybe you never have to deal with it. As to avoiding needles, I agree with you all the way on that not to mention the side effects you read about on in center HD.
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Shaks I am so glad that all is going well. My husband has his PD cath placed on Thursday. I am pretty anxious but following along on your journey so far has helped me, so thank you for posting. I am planning on becoming a donor for him or in paired program if we are not a match so I am trying to look at this as just a bridge to get us where we need to go. Please keep posting. Thank you.
Nikki
:flower;
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How is your husband doing Nikki? He should have his PD training nurse look at the catheter about a week after placement to change out the dressing and check the healing of the exit site. Hopefully he has minimal discomfort and is doing well. It is very strange having a tube sticking out of your belly. The clinic will add a transfer set to it that will make it even longer if the surgeon did not do so. I purchased 5 of the Stickman PD belts to manage the catheter and transfer set. They work good and cost 20 bucks each. I use them in the shower too. Let us know how everything is going. I did another full exchange today. I will be doing multiple exchanges tomorrow at the clinic and they called saying supplies will be delivered between 8 and 12.
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We go in for surgery Thursday 10/3 @ 5:30am. They decided to tell us today that the home visit will be tomorrow at 4pm. Thanks for all the notice! :sarcasm;
Anywho we are running around like crazy try to make the house good enough. I think my husband is worried if they see a little dust they might make him do hemo!
Thanks again for all the kind words and support. :-)
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The home visit is a breeze. Tell him the surgery is a breeze too. Once they put you under anesthesia you know or feel nothing. Just be sure to follow post surgery instructions from the PD nurse. My hospital said it was ok to shower after a couple days but the PD nurse said no way and to wait at least 2 weeks. Honestly, that was the worst part of it. Having my wife and son there was reassuring. He will be fine and is blessed to have a loving wife like you. Keep us posted.
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Did a number of exchanges by myself yesterday at the clinic. There is a lot of detail when you follow all the instructions but it went real well. Got my shipment yesterday and it was a bunch of stuff. I took my BP last night and it was 129/85. I have not had a reading like that in many many years even though I take quite a few BP meds. Being full of 2 liters of 1.5 solution made my belly pooch out big time. I hope it continues to go well as I start to train on the cycler in a few weeks. So far not the least bit of discomfort while doing manual fills and drains.
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That is awesome! I am so glad you are doing well!
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How are you feeling Shaks? How goes training? Justin's surgery went well. He was in a lot of pain at first but is now loopy on pain meds and feeling better, Thanks again for all of your help and advice. :thx;
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Hi Nikki. All is well. Got an Iron infusion at the clinic today and did a fill there. Then the PD Nurse came to my house and I did a drain there. Tomorrow she will be coming to my house again and I will do multiple exchanges there. After that I am on my own as far as CAPD goes (manual exchanges). We then will start training for CCPD (cycler). I am so happy Justin did well. Make sure you get some PD Belts. As you transition into training you will see there is a lot of detailed steps in PD. I promise you though that it gets easy to remember as you go through the training. The Fresenius program is very well organized. I am very pleased with my experience to this point. Best wishes for a speedy recovery for Justin.
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Glad everything is still going swell. Keep me updated on how you are doing! We start training 10/17!
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On my own yesterday. Did 3 manual exchanges. Had a bit of drain pain last night but it was manageable. I just stood up and shuffled around a bit. Will do 4 exchanges today. Now I got to figure out how I am gonna pay for all this stuff. Got bills from the hospital and the surgeon that total about 13k for the catheter and fistula surgeries. I plan to call medicare next week if they are even open with this government shut down that is. Seems like there is always a challenge.
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I am now having drain pain on every manual drain. Its not horrible but I definately know its there. Thankfully it seems to be at the very end of each drain. If it gets a little too bad I clamp off and jiggle around. I filled last night at midnight with 2000ml of 1.5 and drained 2100ml this morning. I am adding Heparin to the first fill of the day. I am doing 4 exchanges per day.
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The drain pain will lessen as you progress, and doing the 'PD shuffle' should break the suction and give you relief.
Keep working at it!
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Sorry you are having pain shaks.
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Thanks Nikki. This mornings was totally without drain pain. Really wierd. How is Justin coming along? I hope he is feeling better.
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Started training on liberty cycler this week. The first day sucked with draining issues and drain pain. Yesterday was a lot better on the Tidal setting. Today we give it a shot at home. Honestly if it is a pain I may opt to stick with manuals. I have got that down.
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We start training again Monday. We only got two days in so we are kind of starting all over again. Keep me posted on how the cycler goes. They want Justin to switch to it after a month. He isn't sure if he will like being hooked up all night. Sorry you had drain pain. Hope it gets better.
:flower;
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Its 11:45 pm my time. I am hooked up now at home having done 1st fill and am in first dwell. We will see how it goes. Hopefully I will fall asleep and in the morning I will have completed my first solo on the cycler. Training nurse was very supportive and reiterated it was my choice as to cycler or manuals. I do not like the feeling of being hooked up while sleeping. Guess I will just have to get over it. Lol
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I hope your first night went well. I went to the cycler during my first week of training. They only trained me on manuals so I'd understand the process. I had drain pain, too, and I still do sometimes after two months, even with the Tidal program. It does get better - have hope! I had trouble sleeping through it at first. That gets better, too. Now I usually sleep through it most of the time. The hard part is needing to watch the clock in the evenings to make sure I head to bed on time. I need to be hooked up by 8:30 pm for it to stop at about 6 am. I still work full-time.
During training, they told me that during the setup process earlier in the evening, I should take it through until it tells me to hook up. It didn't take me long to figure out that this isn't the best place to stop. I do the setup at around 5 - 6 pm and I stop where it tells me to make sure the blue patient line is open, after I confirm the number of bags, before it primes. This way, it's priming with warm fluid and the fluid isn't sitting in the tubing getting cold before I use it. That first burst of cold solution hurt if I primed earlier.
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It went well last night. Hooked up at 10:30 PM and done a little after 6:30 AM. Had negative 112 UF though. I am doing 4 exchanges with 1.5. Did not sleep well though. Watched the machine like a hawk on all the drains with my hand on the blue clamp. lol
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Sounds a lot like my first few nights. I was so afraid of drain pain that I spent all night was ready to break it off at any second, and I was sure I was going to immediately end up with peritonitis, so I had to keep checking to make sure my bags weren't getting cloudy. I don't think I've had negative UFs, but my UF was low until I added in a green bag. I put a green on the heater now, and hang a yellow. I use the full green bag and about 1/2 of the yellow across four exchanges, but mine take 9.5 hours to complete. My UF is usually about 1100 and ranges between 800 - 1300.
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I am draining into the toilet with a long drain tube. The only thing I got to check is the tiny little bag built into the drain line with the 2 yellow clamps. Its hard to see. Really hard at 6:30 AM with no sleep. I made one bad mistake last night. I forgot to turn off ceiling fan during disconnect. I smacked myself in the head this morning and said: self, concentrate. Do you have trouble breaking off the red cones in the solution bags and getting them out of the little slot they are in? That was about the most challenging part of it.
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Hate those cones! What seems to work best for me is to press in on the break with my thumbnail while I give it a shake, then use my nail to push it up further, shake again, repeatedly. Sometimes it also helps to hold the bag like a baby with one arm while I shake the connector end and/or jab a thumbnail into the break to push it up.
I'm not good at making sure everything is clear / no air flowing, especially before disconnects. I have two dogs in the bed with me and if I took time to get up, scrub my hands, block heat vents, and everything else, I'd be changing my sheets every morning, too. One of my dogs *will* pee in bed if I don't get him out as soon as he wakes up. Any movement from me is enough to wake him. My morning routine has turned into a container of antibacterial hand wipes used very throroughly, mask or hold my breath, hand sanitizer, and move as quickly as possible to disconnect.
I'm still on drain bags, but thinking it might be time to ask to change to a drain line.
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You guys, as always, have been very helpful. I am going in soon to have my veins mapped and the more I think about it, the more afraid I am. Thank God for all the wonderful people in IHD!!!
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I totally understand your feelings Jean. What can we do though. Just take one step at a time and know that it will work out. I am sorry you are having to deal with fear or anxiety. If I can help by answering anything based on my experience to date please ask. It will be ok. We are all here for you.
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Wow! Tonight I got the red cones to break off and drift into the bags almost instantly. Yay!
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Thanks Shaks. I know I have this support and I am grateful. I just guess I thought this would never happen, and here it is!!! One day at a time!!!
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Jean, you mentioned vein mapping. Are you preparing for Hemo or are you thinking PD or maybe getting both a PD catheter and a fistula like I did?
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So, after a couple weeks on the cycler with a bunch of alarms and some real slow drains we seem to have figured it out. On the Tidal program I do an initial fill of 2000ml of 1.5. Then I drain 1600ml and do 3 subsequent fills of 1600ml. The final drain takes whatever it can and I have been averaging about 500 UF on the program. Thanks goodness the last 4 to 5 treatments have been drain pain free and no alarms. I get to remain empty during the day and the program takes about 8 hours to run when things go well. I see the light!
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I am so glad!!!
:cheer: :cheer:
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That's great news Shaks24! And I'm sure it's a relief to you that things are going better.
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Thanks Joe and Nikki. Its a relief to know we have a plan that's working.
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My kidney function is actually improved slightly at 21%. I however have been feeling horrible for the last 3 or 4 weeks with classic ESRD symptoms. My Neph suggested starting PD to get to feeling better and scheduled appointments with a surgeon and a PD Clinic to start training. Is it crazy to start at 21% function? From reading on this site it seems as though most start at much lower kidney function levels. The meeting with the surgeon this Thursday is just a consultation to schedule PD catheter placement.
The Neph I deal with generally starts people early on PD to preserve residual function for a longer period of time. Residual declines faster with HD (in the words of my neph "It's generally all gone in 6 months"), and the studies show that starting people who are going the HD route as late as possible tends to have better outcomes. GFR 21 sounds way early for HD, but not for PD. Plus, you should be able to wait a couple of weeks for the PD cath to do some healing before you have to start D.
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Thats good to know Simon Dog. I definately feel much better since starting PD in September. My Neph felt it was time as well based mainly on symptoms. While it's quite a bit of work to do home PD, it sure beats feeling like crap.
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Last night my program ran in 7 hours and fourty minutes. That is quick. The variable always seems to be the drain time and as of late its been quick. For those starting on the cycler, do not get dismayed if you have issues at the onset. Its amazing what adjustments can be made to iron out any kinks. I highly recommend the Tidal setting and wonder why the centers do not just start with it.
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Another benefit of the cycler: when I was doing manuals 4 times a day, the skin between my knuckles literally dried up to the point of cracking open and bleeding. I guess so much hand washing and sanitizing caused this even though I used moisturizing lotion in between. With the cycler you do not have to hand wash and sanitize so many times during the day. My hands are now healed. yip yip yipppppeeeee!
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Are you sleeping through the night now Shaks? It took a couple of nights for me and I couldn't sleep through until they switched me to Tidal, either. I was too busy anticipating drain pain. It's hard to believe now that I've been doing this for over two months already. I'm glad you're feeling better. How long did it take before you noticed a difference? I thought I felt a bit more energetic after just a few days, but I wasn't sure if it was real or if I was just imagining it.
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I am sleeping better but I would not call it sound sleep. I think it will get better in time. I do feel better now but am somewhat weak and tired. I own a small business but have not worked for a few months. Its physical work and I just do not have the strength to do it now. Maybe in time this will improve.