So I can't really see where anyone put a step by step account of the PD experience on here since DAF1234 put comments in 3 years ago. So I'll document as best i can this experience.
Last Monday (Week 1) I had the PD catheter placement surgery.
Today, I had an appt at the Fresenius Dialysis Center where one of the PD nurses removed the original bandage that was applied by the Surgery team who placed the PD catheter. The bandage was fairly large (about 12 inches wide by 6 inches tall with LOTS of tape holding it in place) and contained both the incision wound for the catheter, but also covered the small incision areas toward my right side where the surgeon inserted the camera he used for positioning the catheter. There was also a fair amount of addition bruising further around my right side that the PD nurse said she hasn't seen before. So not sure what happened there??? Looks like someone gave me a good kick in the side while I was down. Maybe I offended one of the nurses while under anesthesia? Who knows. Once the original bandage was removed I could see where my little "alien" came out of my tummy. There was also some kind of ring around the tube at skin level. It was like a small rubber band. The nurse peeled this away after removing the bandage, so it was made out of something like plumber's putty. I assume this helped seal the area around the tub next to the skin, not sure. I was actually fairly amazed how quickly all the incisions were healing. There was a slight bit of redness just around the tube, but the nurse said it wasn't anything to worry about. Before removing the bandage, she prepped the area by having me pull up my shirt (but not off) and unbutton my pants and pushing them down a ways, then draped sterile pads over my shirt and pants. She had used bleach water to clean the table where she would put supplies as needed, that included gauze 2x2's that she sprayed with liquid germ killer (ExCept is the name). And she washed her hands and put on new gloves between each and every step. Boy did she go through a LOT of gloves and washed her hands many times and used hand sanitizer a good bit as well. After getting everything set up, she demonstrated the hand washing technique I would learn where you wash the palms, the tops of the hands, between the fingers (counting to 10 for each step), each finger individually, and under the fingernails. She then rinsed her hands and dried with paper towels, not a bath or hand towel, and used a paper towel to turn the water off. Then she donned real surgical gloves before removing the bandage. After removing the bandage, she changed surgical gloves again before beginning the process of cleaning the area around the incision and the tube coming out with 4x4s soaked with ExCept antiseptic solution (Kidney Coach told me the name). Then she applied like a large bandaid type bandage that was like 4x4 with adhesive around the edges. She placed this with the incision in the center and the catheter tube going toward my right side. She then put two 4x4s on top of that bandage and used tape to secure those down. She used a LOT of tape. Oh, before she put the 4x4s on top, she took a piece of tape and taped the tub down to my side about an inch away from the edge of the initial new bandage. She created an "anchor" with that tape, she said, to hold the tube so it would not be pulled easily. Then she put a regular size bandaid on the camera incision location. She then coiled the remainder of the tube around and used tape to secure it on top of the last 4x4's she applied. It was under the bandage on the original surgical bandage, but she taped it on the outside. So I can undo that tape if i want to display it to my freinds (NOT :-). At that point she removed the draping and I could pull my shirt down and refasten my pants and belt which falls just below bottom of the bandage. I wore pants with stretchable side panels that I had ordered from a policeman's gear site called Galls. They seem to work well. I'll see if they still work once my tummy is full of PD fluid. This all took about 40 minutes. It was done in one of the 4 PD training rooms they have on location. So that was it for week 2. Next week, she will repeat this process with the current bandage, but will also put some fluid through the tube to do a "flush", then drain it out. Will report on that next week.
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RonZone
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You did well to remember all that Ron! The anchor tape is really important as it will reduce the risk of getting your alien caught up. I once managed to get mine caught on a door handle! Having the anchor tape both reduces the risk of catching it and additionally reduces the damage to the exit site to an extent. I use three bits of medical tape to fix my pipe to my stomach plus a band aid with slot in it to hold the end of the catheter.
I will attach a photo tomorrow. Having the right band aid and medical tape is important as some sticks too much and leaves a residue and others are not sticky enough and your pipe will fall down. I will send you the details of what I use.
Then you peel the backing off and stick it to your belly or chest and slide your transfer set it. You can put a small bit of medical tape on it to lock it in place to stop it sliding out. I find this method a lot more comfortable than the PD belt.
No problem. One of the benefits is that it lasts for about 4 days and you can slide the transfer set out, do your exchange and then slide it back it. I can send you details of the band aid size if you want them. Also it's important to get the right sort of medical tape. Not too sticky but sticky enough. Again I can supply details of my one if that's going to be useful
Hey, hopefully you can postpone your official entry into dialysis for a long time, but when it happens, have no fear!
Wow. Our experiences are so different. My docs didn't use a camera; they used an overhead ultrasound to guide them while I was awake and commented if I could feel anything. Glad everything went well. Sterile technique is very important.
Overhead ultrasound. I'll have to look that up. Sounds like it would be like looking at a video game screen. That's still amazing that you were awake for all that. But as a positive, at least you had fewer holes to heal up from.
Mostly it's considered "clean" technique unless using "sterile" gloves and drapes. When doing exchanges clean is what is used......gloves from a box etc. Blessings
Ahh, now I know why you wrote this. Autospell changed what I had typed and misspelled Peritoneal, dang it. I have now corrected the spelling. Thanks! Sorry it took me a while to catch that.
A big thanks for such a descriptive account. Its help me realize how important certain steps are and how careful the process has to be. Continued best wishes .
Yeah, I had heard that you have to be careful, but until I saw this nurse do this, I didn't realize just HOW careful you had to be. Thanks or the wishes.
Changing the bandage by your PD Nurse does look complicated...and will until you are healed..(3 to 4 weeks)..it will then no longer require that technique..just clean and takes about 3 minutes a day...handwashing will always be extremely important and I use hand sanitizer between each step..glad to hear you are healing...Cant wait to hear about how much better you feel when the dialysis actually starts..
Hope you like juicy Steak and Chicken, because they will really be pushing the protien on you....Your best defense against infection is plenty of protien to fight it off. The dialysis will remove it each day so you have to replenish it each day..I still struggle with it after spending 23 years avoiding it...
You know, I've not thought about sunlamps. That's definitely a good idea, with timers set so they go off later in the evening, even after the real sun has already set in November and rest of winter. Thanks for the note!
Yeah, she said I wouldn't have to do all the "sterile" stuff, just the "clean" version, which I was glad to hear. I actually don't feel that bad right now, which is why I've not started this process before now, but this is just a "good" time for me to start with everything else I have going on, so decided to bite the bullet. But I'm sure I'll notice an improvement once I get started. I probably just don't realize how much I've slowed down this last year. Now I can DEFINITELY go for some steak and chicken! But how do you keep the potassium down while eating all of that. Steak is full of it it seems. I don't get assigned a dietitian until I actually start dialysis in three weeks.
I'm not sure if sunlamps are the same as "bright light therapy" which is reported to help with sundowning. Also, check Vitamin D levels and use of the medication, Risperone [?spelling.] good luck.
It's not Potassium that you see in meat...its Phosporus...and if it gets elevated they give you binders to take with your meal...they work really good...
Ahh, ok, phosphorus. Got it. Are there any "side effects" from those binders that I need to be aware of? Don't want to swap the devil for a witch as the saying goes. If not, looks like I'm going to be having steak for dinner in about a month! It's been a LONG time since I've done that!
They may not order you the binders at first unless your Phosphorus is a little elevated...usually after you return to eating meat for awhile it will show up...The binders can get your tummy growling, mine did until my PD Nurse told me to eat a little bit of your food...then take a binder will some liquid and give it a couple of minutes to let it absorb and break open..then continue eating your meal....you may still get a little "gassy" at first until your body gets use to them...maybe darker stools but these binders work great...you will need to eat alot of protien...beef is best...but protien usually has alot of phosphorus and these pills do the trick nabbing the phosphorus out before it gets in your bloodstream...The directions will probably tell you different..but mention this way to take them to your PD Nurses...
Dialysis wont remove phosphorus very well....thus the need for binders...My Potassium and Calcium seem to stay in a normal range...but there may be binders for those if yours become elevated..
Tums is also a good Phosphorus binder...and that's what they started me on...but they are full of Calcium so my Labs for Calcium became high..so they stopped that and put me on the binders....all of my Lab work is great now
You can ask your insurance company about possibly going to a Renal Dietician or do some of your own reading at Davita.com or FMC.com. Davita has a food calculator to see how much salt, sodium, protein, potassium is in certain foods.I bought a few pocket-sized Nutrition Calculators published by AAKP (American Association of Kidney Patients) .org. I see you can now download it on your phone instead of buying the little booklet. Go to AAKP.org/product/download-AAKP-nutrition-counter-reference-kidney-patient-electronic-download.
The little pamphlets were only $1.95 or so. Here’s an email address for them and you can ask if they still have the pamphlets: info@aakp.org. They have Fast Food restaurant food calculations as well as regular food! BTW: Steak is not a high potassium food. This calculator says it is 0 grams! It may be high in sodium and phosphorus.
I called AAKP this morning to see if they still sell the pocket nutrition calculator, but not heard back yet. I don’t like the downloadable one. I searched “steak” after downloading and it only brought steak-related food at Taco Bell!
Anyway, there are a LOT of sites that will help you with recipes and nutrition:
NKF.org
AKF.org
AAKP.org
RSN.org
AAKP number is 800-749-2257.
[The AAKP.org website (under “Shop”) still sells some pocket guides, but they were more targeted to issues like “potassium regulation” and “dialysis”. I didn’t see the Nutrition Calculator. There is so much info on the web that it is mind boggling!
Good luck.
BTW: I read that eggs are one of the best sources of protein. If you have high cholesterol, you may need to watch your intake. “The other whit meat” (pork) is good too. I did a Google search recently about the best source of protein.
BTW: Got a call from AAKP. They still have the booklet on food calculations. HOWEVER it did not come up correctly on my Android phone. It came up and was searchable on iPad and the AAKP person said it works on Microsoft. It's pretty cheap. Get one!
Hey, thanks for all this info! Making notes to refer back to. Nice that steak doesn't have potassium. Now to figure out how to cook without increasing sodium. Will looking to those sites and that little pocket guide.
First, I pretty much stopped eating most pre-packaged, frozen meals, such as Marie Callendar, lean cuisine, etc. I lived on those when I was working 70 hours a week! Probably why I got kidney disease!
Watch the ingredients label on food! The sodium in those prepackaged foods are astronomical. I'm sure you've been warned that Phosphorus and Potassium contents are NOT required to be listed on the ingredient label by the FDA. That's where that book from the AAKP comes in handy. Some manufacturers are now putting those ingredients on the labels, but they are not required to.
Actually there is a lot of potassium in meat and chicken. Binders are a pain in the butt, literally. Most you have to mix and drink before a meal. There are some that are a pill. But the main thing it did for me was bind me up like a rock.... absolutely the last thing you want, especially with PD. So talk to a dietician. It will be worth it
I officially become a "patient" next monday and will have access to a real dietitian. So Binders = constipation. Great. Didn't read THAT in the fine print!
I want to thank you for writing this experience and sharing it with us. It was very helpful. Your attitude is amazing and I thank you for the humor in what might not be very humorous. Thanks again
Hey. Last time we messaged you had a low gfr but asymptomatic. What happened? You made the moves to start PD? That was recently we messaged…
Good explanation post for others to read.
Just a fyi the first ‘flush’ will feel like cramps, pressure and obviously feels very weird. You’ll get used to it but since your peritoneal is still healing it will be uncomfortable the first time.
I am still asymptomatic, but after seeing my cardiologist, he suggested that it could be "time" to get started on dialysis. So nothing actually happened other than it just being a "good" time for me to get the surgery done while my dad, (who is 94 and for whom I'm the sole caretaker) is doing good, work was slow, weather is HOT, and the planets just seemed to be aligned for this to happen now, so I can be healed up and have dialysis "down pat" before going into fall and especially winter when my dad's dementia begins acting up more as days get shorter and he can't get outside as much to reorient, and before work picks up again in the fall. So the quick answer is "just felt like the right time". I still don't feel like I "need" dialysis, but I guess I can't totally argue against the numbers that it was coming and coming soon enough anyway.
And hey, discomfort seems to go with the territory with all this stuff (see my post about not being able to pee after the surgery. Talk about discomfort! So I guess all that prepared me for the discomfort that's yet to come. Didn't figure any of it was going to be a walk in the park. But I sure do thank you for helping me be prepared for that "flush". The PD nurse didn't mention anything about "discomfort" (translated as pain) that would be associated with that process. So I really appreciate the heads up. I'll give folks another post with detailed report about the process after it happens. That's one of the issues with this site. There's no one "place" to get total info about each step of each dialysis option. You have to search for days to find all the pieces to the puzzle. And you're sure not going to get it from your neph!
You certainly have a lot going on. Our own health and also being a caregiver for family can be very stressful. I’m glad you’re asymptomatic. I was too for awhile and then I got sick. Maybe toxic. I agree with your comment about searching for information from other patients and their experiences. I have also done that many times. I feel like I’m on my own to navigate. I’ve taught myself most of it. I am a cardiac sonographer so I have a medical background. And I am no longer working to answer that question. But, I do think there should be better patient hubs and groups for support online. Maybe Facebook but I’m not on that. Well, good luck with your PD. Keep your posts updated. It’s helpful for many. I can help with questions too.
There is a PD support group on FB (it's private. You have to ask to join if you make an acct on FB). It is helpful, but there are differences of opinion and I find this forum to be friendlier!
My Transplant Hospital (in Atlanta) has a Virtual Support group via Zoom once a month. All different stages of kidney disease and Transplantees can join. We have some ppl that attend that are not even using that hospital for transplant. The Transplant Social Worker who runs it is a very nice person.
My numbers. eGFR 5.8. Creatinine 10.4 (on the scale my lab uses, compared to 1.0 which is normal). But to be honest, I started as much because it was just a good time for me at work and in other areas of my life than it would be in the fall. I still don't feel that "bad" and don't actually have "symptoms" other than some fatigue that causes me to rest more than I used to during activities.
Because fluids collect more when your kidneys are not functioning at full capacity (and you could be on dialysis!), the fluids can settle around the heart and lungs.
I had an AFib (never had heart problems) when my electrolytes plummeted (specifically sodium & potassium too low and was I was dehydrated from vomiting and diarrhea incident). Went to ER immediately and was then put on blood thinners. I was in my third year of PD.
What’s your GFR? I think my Neph told me to go ahead and get the catheter (said it was closing in on Christmas and a lot of doctors go on vacation during that time). If I had it to do again, I would have waited. I think my GFR was close to 15 and I didn’t feel that bad. [I’ve read about ppl on this site who have a GFR of 8 and are still working!]HOWEVER, my Neph was the chief physician (only one actually) over my FMC clinic. So, he doesn’t get paid by Medicare for the extra exams per month (once in his office; once at the clinic). Then there are blood tests, charges for Renal Nurse services (training on cycler, etc.), Labs, etc. Even though I liked my Neph, and he was very intelligent, I began to think it was all about the $$$$.
I’m not trying to say that is what happened to you. It sounds as if it was a good time to go ahead. I wonder (never asked): Do you HAVE to start the dialysis and training in 3-4 weeks just because you have the catheter in?
I worked for an attorney that specialized in Elder Law. We had a lot of info on Caregivers needing a respite and outlet. Your father’s insurance may have resources to help YOU as the sole (?) caregiver (including home health care to give you a rest). There are other legal issues regarding your father’s home if you have been his sole caregiver for “X” number of years (forgot what # of years), but the deal is that you would be able to stay in the home if your father passes without paying Estate taxes. Check with an Estate or Elder law atty.
Ok, responding to this post here. My eGFR was 5.8 two months ago when I had lasts labs done. Creatine was 10.4 (based on my labs scale with 1.0 being "normal"). I'm also still working, but my "job" is sitting at a computer (I'm a software interface designer), so not a lot of physical work involved. And my Neph actually asked me last fall if I was ready for Dialysis. A nurse told me January 2020 that I would probably be on dialysis within a couple of months. But I kept telling them that I just didn't feel that bad, and had somethings I wanted to do before starting "D". I don't think they liked it, but they didn't put up a huge fuss about it.
Now about having to start dialysis. Not sure. I'll ask my pd nurse, though I got a feeling I know what she will say You are correct that it's hard to get an unbiased answer from people when their income is tied to offering that service. Wish there were an unbiased source to provide that assessment. But I don't think it exists. Possibly my primary care doc??? Not sure if he would want to make that decision, going against the Neph and everybody.
I may need to look at my dad's insurance. Had not thought of that, And Medicare as well. Thanks for that idea! As for his home, I've been on the deed to his house for 14 years, with him having right of survivorship, so that's taken care of already. We had an attorney handle the paperwork on doing that. You have to have that arrangement made 5 years before he would need nursing home care for that to work because of the "look back" rules in stuff like that, but it's been way over 5 years and he's not yet ready for nursing home care yet. So got that covered. Thanks for the info though. I REALLY appreciate it! Others reading this can use it.
You have right of survivorship...since you will (hopefully) survive him. Yes, the survivor must live in the house (some States may have different requirements, but I think it is federally set) to inherit it when the disabled person dies.
I'll ask my Transplant Coordinator about starting the PD treatments. He's a RN and has another acronym title "CSRN"....lots of experience.
Heck, my first Neph said when he was in college (1970's -- he and I were born the same year), the med schools taught approx. "15 minutes" about kidneys and how they contribute to the body. In other words, most M.D.'s are ignorant about kidney function.
My Internist overlooked my GFR for 6 months (it was 25) until she said she "thought I may have" CKD -- Stage 3 or 4. She didn't even know how many Stages there are (when I asked her)! She was educated at Emory Univ!!! Scares ya, huh?! [I was a Network Admin, as well as hardware technician at GE and Siemens for many years. It stressed me out!! Went on Disability at age 57.
They said at my age (66 at transplant), a deceased kidney (judging from age of donor too) shld extend my life about 15 yrs. -- could be more. Have you been evaluated for transplant? I was evaluated and approved a yr before I got on dialysis (2015/2016).
Yeah, this whole world of "the kidney" is a fairly new thing. I guess I should count myself lucky that I got it now, not in 1966. Ahh, network admin, Bless Your Heart as we say in the south. You might as well have bought a dairy farm for the hours you had to put in. Yeah, I think that the age of the kidney donor and the age of the recipient has something to do with longevity, along with planets being in alignment and all that. Not sure what the average is for someone my age. But I've heard of some only lasting 3-5 years. Some even less. So it's a crap shoot. I've not started the transplant eval process yet. Wanted to get this under my belt first and get really good at it. I figure that the later I started dialysis, the better, so possibly the later I get a transplant the better? I could be totally wrong, we'll see how this plays out. That is IF I decide I actually want to go down the transplant road vs just switching to Home HD. Still haven't made up my mind.
All I can say is WOW. You are amazing. I really don't know if I could do PD. I watched a video on how it was done once. The risk of infection scares the heck out of me. I'm weird, I guess I am less scared of my needles sticks. Regardless, you're doing a great job!! I've been following your journey. Keep up the good work!
Hey, thanks for the positive vibes. I guess each version of this has it's own set of complications. I chose this one cause home hemo looked even MORE complicated and I was not sure I could handle it, so I'll start with this to get my sterile skills where they need to be and learn to follow all the instructions that comes with this before venturing into the realm of home hemo.
Yep, ya gotta follow the rules! This is not the place to try and cut corners, LOL! I follow my directions to the tee. I've been very fortunate, everything is going so smoothly and I have no issues. It's coming up on 5 months doing HD on my own and I have settled in to a routine. I work (at home) and do afternoon dialysis simultaneously 3 x week and 1 Saturday morning. I know it's not for everyone, but this method seems to be working for me right now. Keep doing what you're doing till your kidney comes, you've got some pretty good company here. We'll cheer you on the whole way!
When I started PD, home hemo was not available for single ppl who lived alone. I think you made a good choice and PD is no big deal if handled right. If you have trouble with draining, filling, cramps, alarms, etc., talk to your Renal Nurse! They are there to help! I had NONE of those complications; I was 60 yrs old when I started PD; and I did not like the looks of in-clinic hemo! No, no, no!
Yeah, home hemo is still not "common" but according to my PD nurse, they are pushing to move more people out of centers and into home dialysis, so it will probably become more common as years roll on.
Awesome it went so well. It's called peritoneal dialysis. I hope you both wore masks. Next time she may change the transfer set. If so she will use one set of sterile gloves and drape, otherwise they will be clean gloves and clean drapes only. Blessings
Hey, yeah, so far so good. Yep, we both wore masks the entire time. She didn't mention changing the transfer set, but I didn't ask either. She said I would probably start training for doing manual exchanges August 8, so I still have a few visits where she does all this between now and then with a couple of those "flushes". And I had no idea that there were "clean" gloves vs "sterile" gloves. Learning something new all the time. I assume once I start doing this I'll be healed up enough to just use the "clean" gloves and not have to use the "sterile" variety. Guess I'll find out. Thanks for the blessings!
My PD Nurses warned me against using any gloves ....they just want clean hands and lots of hand sanitizer...they said people will use gloves instead of proper hand washing techniques...but your PD Nurses will tell you what they want you to do...Gloves in a box are not cleaner than freshly washed hands
That's a good thing to ask my PD nurse about but I don't know, you haven't seen my hands after a day of working in the dirt or on a project There's some of that dirt grease and grime I get into that would be difficult for any soap to remove! It may be time to clean up my act a bit. Ya think? Like find cleaner hobbies Maybe take up photography instead of playing amateur mechanic and landscaper. Though I do need to fix my irrigation system this fall once the weather clears up and it's not raining so much. That'll be a fairly dirty job.
Yes, all a matter of interpretation. I prefer gloves after freshly clean washed hands. Since I've survived 7 bouts of sepsis requiring weeks to months in hospital all caused by nurses failing to follow clean protocol I'm pretty anal and hawkish about procedures.
Dang, that's a lot of suffering you've been though! I'll do my best to avoid that, but we'll see how I do. At least it will most likely be my own fault if I have that experience and not quite so dependent on others. Again, thanks a ton for all you do for everyone on this site. You're the standard to follow.
I know you've gone over the physical aspects pretty well but what about insurance? Do you have it through work, Medicare, or other? I'm doing my best to continue working so I can continue to have good insurance but just in case I'm researching Medicare too. It probably would be secondary as I'm covered under my husband also.
I have medicare part A and B (I'm 69) and a supplemental Blue Cross Blue Shield policy that covers what Medicare doesn't except for a $250 deductible at the beginning of the year for part B. Now that being said, I won't really know until all the bills are processed and see if someone sends me a bill. Whether that be the hospital, the surgeon, the ER where I had to have that Foley catheter put in after the procedure, the Urologist I had to see concerning Foley removal, etc. And it sometimes takes MONTHS for all those bills to process through Medicare, then BCBS and back to the respective medical office's billing dept, before they get around to sending me a bill of what ever might still be owed by me. So there's absolutely no way to know how much out of pocket to expect until all that is done and someone sends me a bill. That could be Christmas by the time that happens. I may post something if I do get a bill from one of those sources and let folks know. At age 58, you're not old enough to sign up for Medicare, except under the special rules for kidney folks, but I'm no expert on that. You would need to talk with Medicare themselves to get that info to see if you qualify. Though you may need to be on some kind of disability for that to happen, not sure. Would be worth the call to ask them, for sure. Then post in a note what you find out so others will know.
Mostly I'd like to keep working in order to keep my insurance. Based on what all I've read here since I'm at the very, very beginning of trying for a transplant (a couple of calls but not seen there yet) I think at the rate things are going I might be 62 before I see dialysis or close to a transplant. At 62, IF I lost my job then I could get Medicare early but I'd really prefer to wait as long as possible. Best laid plans of mice and men and all that. I'll do what I can on my part to keep my function steady.
I will say a prayer often for you that you are able to make it to 62, AND keep your job if at all possible! I just looked it up, and you probably know this already, but the link I found said this, so it seems that would qualify you at 62:
You can only enroll in Medicare at age 62 if you meet one of these criteria:
1. You have been on Social Security Disability Insurance (SSDI) for at least two years.
2. You are on SSDI because you suffer from amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig's disease. ...
3. You suffer from end-stage renal disease.
No way to predict the future, but at least you have that to fall back on. Just do what you can do as best you can. I'm about to start dialysis next month and still work part time. I hope to continue working part time for the rest of my life. We'll see how that goes these next few months, if that will be practical, and if I don't experience any major issue with PD. So say a prayer for me when you get a chance!
I'm really not one for prayer but I'll say one for you Although my job is a desk job, I'm an Internal Auditor for a small Tribe, I don't think it's part time but maybe we'll see. I need the mental stimulation of my job since I live in a remote area and have no neighbors.
I'll tell you about Medicare and getting qualified. Worked with lawyers in that too.
If you have ESRD, you will be accepted for SSDI (if you've worked at least 10 yrs) or SSI (if you worked less than 10 yrs). You automatically get Medicare 2 yrs (if under 65 yrs old) after being accepted for SSDI (Social Security Disability Income). Medicare IMMEDIATELY if you get SSI (Supplemental Security Income).
My SSDI (I filed myself online) went into effect 3 mos after applying, but I pretty much had to quit work while waiting for decision from SSA.
I had NO insurance until 2012 when Obamacare kicked in, and that was when I got diagnosed (actually it was about Jan 2013. I started getting very sick in 2012 and went to my County-subsidized medical facility and had a blood test that determined that I had chronic kidney disease). I got on Medicare 2 yrs after applying for SSDI in 2013.
I do not recall paying anything for the surgery to insert the catheter. Remember: Most hospitals, because they take Federal funding, are required to allow for financial assistance if you need it. Check with the hospital's financial assistance department if you are in need of medical Financial assistance. They'll make you put in an application for it.
I tried to use paper tape and cloth tape but it really irritated my skin. I used it while recovering from surgery, but couldn’t use it once I started PD.Here’s a website where I got a camisole (they have mens undershirts too) that hold the catheter tube very well and I never used tape. My nurses always said my “exit site” was perfect! carriage house-enterprises.com. These under-shirts NEVER pulled on my catheter tubing!
Never heard of anyone getting the “side” hole to put a camera. Maybe they started to push in the catheter and met resistance (which I would have thot they would have seen an obstruction when they did the CT of abdomen before the surgery!)
My nurse washed her hands a lot. I’m not going to tell you not to be so “thorough “, but I never was so anal about it and never got an infection or peritonitis. They kind of do overkill because they have liability insurance and are subject to malpractice.
I was on PD 7 years. They started training me to do manual exchanges about a month after surgery.
You’ll get the nitrile surgical gloves as part of the supplies you order. Order enough since Covid has really drained the supply. You’ll also get a dispenser of antibacterial hand soap with supplies too. Gauze, tape, masks, medicines you may need to put in your solution bag (like antibiotics if you get an infection), syringes….. Get a space at home ready!!!
They will order your cycler (machine) after you learn to do the manual exchanges and get all the supplies you need by a small semi truck owned by FMC (“True Blue”). They’ll put all the supplies in your house/apartment…whatever.
Let me know if you have any other questions. I think 7 years on PD taught me just about everything I needed to know!
Good luck! Once you get the hang of it - piece of cake!
So far so good on the tape issue. No reaction. But I ordered some "blue tape" folks talked about just in case. They did not do a CT scan before the surgery. If I have a follow up with the surgeon, I'll ask about that second hole. And yeah, I'm sure they have to go way overboard on the hand washing and all that right after surgery when they are changing the dressing and reapplying a new sterile dressing since the wound was not healed completely at that point. I'll see how it goes during training next week if they lighten up on any of it.
Quick question, tell me again why you can off PD after 7 years? Did it stop working, how did you know it wasn't working any longer? Also, how old were you when you started? I hear the older you get the less time it will work. I'm 69, so I figure I've got around 4 or 5 years doing PD before having to do something else. That's the plan anyway. But to get 7 would be awesome!
I was 60 when I started. Just saw an old blood lab report from around the time I got the catheter. I was hovering around 13-15 GFR (it can fluctuate a few points between labs).
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I would totally screw that up I'm sure. 
Dialysis Nurses Trying to give unsolicited medical advice
my first day of dialysis at home
Prepare for dialysis.
Update! (Cancer, dialysis & bypass)
First day of dialysis
