Tomorrow I visit my vascular surgeon to discuss access surgery for dialysis. My nephrologist is suggesting both a fistula and a PD catheter, using the fistula as a backup in the event my PD catheter fails or I get an infection. My GFR is 10, but I don't have symptoms of kidney failure and I feel fine. My questions are:
1) Has anyone had both a fistula and PD catheter done in preparation for dialysis? Is there a preferred option (from patient standpoint) where to place the fistula? Can the two surgeries be done at the same time?
2) Has anyone had the "buried" or "embedded" PD catheter? I would prefer to be prepared but having the catheter embedded needed sounds preferable to me but I can't find much about it in my research (pros/cons)
3) Any questions that I should be asking the Vascular surgeon? My nephrologist has pushed the process without an explanation of what to expect or the various options.
Thanks in advance for any help
Fleo
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fleo
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I have an embedded PD catheter. I don't have a fistula so I can't vouch for that, but I can vouch for having a central line for hemo and a PD catheter.
Basically a buried or embedded catheter means that the catheter goes into the skin and is run a little bit below the skin before going into the abdomen. There's 2 cuffs that hold it into place and it's called a "tunnel". I've been on PD for about a year now and overall it's gone very well. You do have to maintain the exit site daily and you are trained on how to do so. It can be itchy from the tape, bleach and constant cleaning which causes dry spots, but there's different tape types that you can try and the exit site care is individualized for your needs. I will say that PD is more independent and there's more responsibility placed onto the patient in regards to treatment, so that can be a concern if you are forgetful about taking vitals daily and regular cleaning. You also have to worry about peritonitis and exit site infections, which is usually a result of neglecting certain things like bleaching your shower head and bathroom sink weekly, forgetting exit site care and cutting corners on PD treatments. You can also get them from being constipated, so don't be surprised if your nurse regulary asks you about your bathroom habits!
It's always good to be prepared and have both options available to you. I had to do emergency dialysis and needed a chest port for hemo (it was terrible, do not recommend...hemo didn't agree with me in general). Personally for me, my surgeries were separate, but you can always ask! I was always told a fistula should go into the non-dominant arm and it can take up to 9 months to mature, so getting it done sooner rather than later is always a good idea.
Ladybug, thank you so much for your informative and reassuring response. I leave for the Vascular surgeon in a few hours an feel prepared with sufficient basic knowledge to discuss my options, though I wish I knew more about the placement opts (wrist, upper arm), but I'm sure the surgeon will explain it. I'm hoping they will do both procedures at one time, but don't know if that is practicable.
Your input on PD reassures me as it is clearly the option I will pursue, but I like having the back up access as my research indicates that a large PD patients eventually need Hemo, temporarily or permanently, for a host of reasons. I think PD works for me as I am very detailed about following directions regarding procedures though I don't know the extent needed, your email gave some insight with needing to use cleaning agents on shower heads and sinks, I didn't know that. I keep researching how to set up your home, sterile techniques, dos and don't, but haven't been successful. I work well if I have a checklist to work from. I hope to meet with a group that are experiencing PD to get their perspective, similar to this site which I find so helpful.
I am lucky that my wife is a Registered Nurse and knowledgeable about what is involved though she never works with dialysis she is knowledgeable about the process. My goal is to manage it myself and not put the burden on her, but let her have some oversight and provide guidance where needed.
Wow, sounds like you’re so prepared! I’m nearing it soon and keep going back and forth on what to do. I’m very detailed but also scared I might mess something up! My GFR is 8. Will be praying for you. Please share details when you learn more😀
I have a suggestion to help with all the tape marks and hassel os taping your skin. I tried 3 types of tape -- paper, cloth, and that low tack tape -- but none would alleviate the red marks and sometimes blisters on my stomach.
Instead, I have bought several camisoles I found on Carriagehouseenterprises.com. They have mens TShirts, womens camisoles and they are wonderful. Check them out!! The have a button hole for the catheter tubing to come to the front of the T, then two sides of velcro that hold the tubing in place (up to the blue valve thing) and then a pocket to put the remainder of the tubing in. NO need for tape at all since the velcro and pouch keep the tubing very secure. I have been wearing them for about 3 years now and am very happy!
Theyhave poctures on the website. Actually, Ihave thought of making some myself! If you have a sewing machine, give it a try!! They look very simple to make (i havent used my sewing machine in eons, but keep thinking I want to do it!).
Thank you! Thankfully, I'm actually getting ready for a transplant in a couple of weeks, so my tape issue will be resolved soon! I will make sure to pass along the info though!
I was astounded at a recent get-together of my clinic's PD patients that none of the women had ever search for a Pd catheter "holder". They were all complaining about the tape! The camisole/catheter shirt also helps to alleviate itching of and pulling on the catheter tubing.
I hope all goes well for you and that your new kidney gives you a renewed sense of health and happiness!! 👍🏻😀
Thank you! I currently use a dialysis belt, which minimized the tape significantly. I just use tape for when I cover up my exit site (when I go out) and an anchor tape. Brown tape tends to work best!
Hi, I am brand new here, diagnosed with IgA Nephropathy in 2015... not currently on dialysis, but I am well on my way. Just met with the transplant team in regards to getting things set up and on the list. I came across your message above about the camisoles and checked them out and they look amazing. question for you... are they true to size? I normally wear a large or extra large depending on the style or brand. Thank you for sharing your amazing find!
Thank you fleo for posting your questions and to those of you who replied. I have stage IV CKD. I am due for some labs next week, but my last GFR was 17 with my last draw 3 wks ago. I know that I am getting closer to dialysis and I too have all those doubts and questions. I am always reading posts and reading on line to better educate myself on my options, but there is nothing like reading information and advise given by people who have been or are going through it.
I had my appointment with the Vascular surgeon regarding a PD catheter and a fistula. Also asked about an embedded PD catheter. The surgeon was open and frank about the options. Since my GFR is around 8, he felt it made sense to go with the PD catheter and postpone doing the fistula to a future date. While he did "embedded" PD catheter surgery, he's not a big fan. He believes that you should have the PD catheter procedure when you expect to start dialysis as not using the PD catheter once in place leads to potential issues with the catheter. Since I am not having ESRD symptoms, the issue remains of when do I start dialysis. I'm trying to be honest and objective about having symptoms and not stick my head in the sand.
Three positions during the doctors appointment:
Nephrologist - Start dialysis asap.
Vascular Surgeon - Start dialysis soon after getting PD catheter
Me: I'm okay with getting the PD catheter it is in place, but am not going to start dialysis while I am feeling good and fully functions with my life/businesses. I scheduled my surgery for early January on the advice of the surgeon but still haven't made the final decision. Please let me know if you think I'm on the wrong track.
The vascular surgeon actually phoned my nephrologist during the consultation to discuss options, a new experience. I respect my Nephrologist, but he is a bit old school, semi-retired with his own health issues. The surgeon did say if he was in my position he would 100% go the PD route due to the flexibility and controlling your own care. I think the eventual outcomes are similar to hemo in the long run, but I'm still not knowledgeable enough to really comment with any conviction. I am considering getting a second opinion from a nephrologist regarding treatment and dialysis.
I have only been in this forum for about a week and can already tell it is a tool for support, knowledge and positivity.
One thing I did learn and I haven't seen in my research is the ability of the surgeon to put in a PD catheter on an emergency basis so that the catheter can be used within 24 hours and before the entry point has healed. That is very helpful to know and is dependent on the vascular surgeon ability and availability.
Sorry if this is wordy being is a therapy that helps.
Learning to stay POSITIVE regardless of what happens next, then after that, and beyond.
From my experience, PD is not something you can do on the fly. The catheter takes about 2 weeks to heal and it can take up to 4 weeks for you to train and build up to the recommended amount of fluid in your abdomen. It's better to get it now and ease into it and take your time than to wait until you actually start having symptoms. I unfortunately know from experience, as I was slated to get my PD catheter placed but needed emergency hemo since I became sick in a matter of 2 weeks. Nothing is scarier than to go from being independent and fine to not eating, barely walking even with assistance and a load of other issues. I got stuck with a central port while waiting for my catheter to heal. Afterwards I did training for about a 2 weeks and started PD, but it was rough. I hope this helps a little in clarifying.
Thanks for your input. I may have misstated what I was thinking, I totally agree with your position that it is better to be prepared when it comes to the PD catheter. I have scheduled my access surgery in early January. I guess I am taking a risk in not having the surgery sooner as I could of had the surgery earlier in December. I want to avoid your experience of an immediate need for dialysis and having to access through the neck, that experience sounds bad.
Once I have the is catheter in place, I'll be (hopefully) very sensitive to my symptoms. I don't want to make a big mistake about beginning dialysis, but if I'm prepared, I do hope to defer starting, which I understand might be a mistake. I'm getting a second option from a Nephrologist about my plan and timeline and will be compliant if he disagrees.
A couple of questions about the process that you would know and I forgot to ask:
1) Did you question the type of material used to make the catheter? Silicone rubber or polyurethane? Does it matter?
2) Did you have the transfer set attached at the time off the surgery? I read that is and option and reduces chance of infection.
3) Can you pick which side of the belly button the access goes? Since I want APD I want to pick the side of my bed to be consistent with the direction of the tubing.
4) Any directions on where I an find information about setting up a clean area in my home. I'm sure the PD nurse will provide something when training but I want to go beyond the handouts they provide and understand in advance so I can have everything set up.
My surgeon didn't mention the above and I wasn't prepared enough to ask them.
Thanks in advance for your thoughts. Reading
inputs from others is always educational and enlightening.
Unfortunately, I don't remember the type of plastic that was used, sorry! If you are sensitive to plastics, I would call and ask ahead of time, since people can be allergic to the plastic used.
I did have the transfer set attached at the time of surgery. Since it's one open tube otherwise, the transfer set is attached to "close" the access site and prevent infection. You can sort of choose which side the catheter goes on, but usually it depends on if you are left or right handed. Since I'm left handed, I have mine on the right side. It makes putting caps and things on and off easier and faster. That way, you aren't fumbling around with your non-dominant hand with an open access port. If you're worried about the tubing getting caught, I've only wrapped myself up in it once while sleeping!
As for setting up your home, Fresenius has a good website for that. I just looked up "clean room for dialysis." In general, you want to keep pets out of the room of choice, and keep the room free of dust, dander, etc. (I vacuum every other week, dust weekly, wipe down surfaces every few days and change my sheets every week or so- blanket and pillow cases are deep cleaned every other week). Vents, windows and the door are to be closed during treatments. People can't come in and out either. No plants either since they move particles from respiration. Don't be surprised if you get bleach on you, your sheets/blanket or the floor- it happens!
Ladybug, thanks. I finally put in the correct search info and have read too much about setting up an infection free environment, learned more than I may have wanted to know. I wanted to get up and sterile my bathroom, kitchen, bleach the whole house, buy air cleaners, but took a breath and got some perspective. Your advice is perfect. I feel comfortable about the process, though I hate to have to ban my dog of many years from my bedroom, but that's the way it shall be.
I totally get it! I have "visitation hours" with my cats! I have a designated throw blanket they can lay on if I'm in my room (and not doing treatment of course!) and it seemed to help. They were very distraught when I banned them from my room at first, but now they're used to it and don't try to run in all the time. Maybe you can do the same?
Not that I wasnt warned and advised against it, Flo, but my dog sleeps in my bed. She sleeps on one side of my queen size bed and she never comes over to my side. She has a blanket and sheet to lay on and I wash those frequently. I am a single woman, no children. My dog has always slept with me and it is mentally more advantageous for me to continue that theory.
I have never had a problem (no peritonitis, no infections), but I am careful and keep MY sheets and blankets clean as well. But...you do what feels best for you. I am just sharing my experience.
BTW: my Renal nurse is required to make home inspections on an every six months basis. She also came to my house when my first PD supplies was delivered so she could help me set things up, made suggestions about where to place things for easy access and made sure the environment was clean. It was a big help!
Good questions Flo! I think the tubing they use is more silicone rubber or polyurethane than hard plastic. It is very flexible tubing and very similar to the tubing used when you start using a cycler (an automated, nightly dialysis machine as opposed to manual dialysis treatments using an IV pole). You will be taught BOTH methods (manual treatments first) and have supplies for both (if you decide to use the cycler machine -- you dont have to) b/c if you are ever are without electricity to run the machine, you can go back to manual treatments.
I am ambidextrous, so I guess the surgeon decided for me! If you have a preference (right or left) that you SLEEP on, I would think that you shld have it implanted on the OPPOSITE side (if you dont, and you use a cycler, you will be laying on the tubing and the machine will alarm!). My catheter is on my left side, and I sleep either on my right side or on my back. My cycler is on the right side of my bed where i sleep.
My catheter was implanted Dec 2, 2015. I started training for manual PD treatments the first week of January 2016 and actually started dialysis a week from the training. My GFR was 15 when I got the catheter, but since it was closing in on Christmas and the holidays, my Nephrologist said to schedule the catheter surgery rather than ending up in the ER with a chest catheter (my doctor HATES those. Talk about an infection waiting to happen!!)
I had absolutely no problems with the abdomen catheter. No infection and my renal nurse says my exit site shld be the "poster child" for what a well-kept site shld look like! Hoorah!
I have not read all the replies, but I would not do both. I have known ppl who were not good candidates for a PD catheter because of extensive scar tissue in the abdomen, but your surgeon will order tests (xrays/sonograms) to determine if that is the case.
I believe if your nephrologist believes you are a good candidate for PD, then I would think having the fistula too would be unnecessary.
My Nephrologist says Medicare prefers PD as a modality, and he only orders fistula surgery for current PD patients if they start becoming non-compliant and he orders them to go on hemodyalysis.
This is my opinion, and I have never heard my nephrologist order both surgical procedures. There may be underlying circumstances, but I would think those would be rare.
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