My mom is scheduled for surgury on Monday so it looks like we’ve got a few weeks or more before she can start at home. I’d like to get a jump start on her room to be prepared. Does anyone here have any ideas as far as tables, beds etc that would make it easy for her? She’s 75 and wants to do it herself, but I know she won’t be able to lift too much. I’m also going to cut a drain into her room so she won’t have to worry about disposing the liquid in the mornings. We also discussed with the doctor about the presternal cath. He’s never done one, but told my mom that he’ll put the exit site up far enough so she can still take a bath or wherever she wants it? I sure would like to hear or find a woman who has a presternal cath to find out the pros or cons. Thank you, Kim
Hi Kim -
I’ve had a presternal cath for the past year, and personally I think it is the way to go. My catheter is approximately 6 inches down from my shoulder & since I am right handed, my cath is on the left side. The presternal is high enough that she can clip it out of the way when not in use. (I use the ID badge clips and clip it to my bra) and it is very easy to access & keep clean. I’ve seen a couple of the regular caths & think it would really rub on clothing - but that is MY opinion.
I hate to tell you, tub baths are still out. She CAN shower, but when you are in a bath tub, the water you are sitting in is dirty from what you have washed off, and if you pour dirty water over your exit site you are risking an infection which can cause peritonitis. NOT A GOOD THING!
The key to successful PD is CLEANLINESS
She really won’t need a drain in her room - if she does manual PD she will drain into a bag - which will later be flushed down the stool. If she uses a cycler, it will come with a 23’ line which can be drained directly to the stool. But what you need to realize is that the PD solution has sugar in it, if it is not flushed (such as pouring directly in the drain) you will get a build up & eventually a blocked drain!
I used a baby changing table to set my cycler on. It had enough storage to let me keep all of my smaller supplies well within hand, and I also had a small 3 drawer rolling cart - the little plastic ones you can pick up just about anywhere. But they will give her a list of items she will need. A few of the items are: A notebook, pen, AA batteries, clorox wipes, antibacterial soap, paper towels. The major things she needs will be sent with her first shipment of medical supplies - like scales, IV pole, BP cuff, thermometer, tape, gauze, mask, etc…
I hope this helps - I won’t be available the next few days though, as I just had a transplant LAST month & I am scheduled to have my catheter removed Monday. If I can answer any questions for you don’t hesitate to ask. Good luck - CJ
Thank you CJ for the information. I talked to the training nurse today and she was pretty adament about not putting the cath up higher. Said that in the 20 yrs of her helping / training for PD, she’s found that the lower the exit site, the better the draining due to being gravity fed? I tried to explain to her that the only reason she’s not “open” to the presternal cath option is because nobody around here does it! (I wanted to tell her that her ignorance in the presternal wasn’t a reason to deny my mom that option!) I just wish there were more people around here that could confirm that they have no problems with drainage and could convince them that it does work. As far as the drain goes, we live on a farm and I can hook the drain into the 4 inch drain pipe. It would get washed down with all the hot water from dishwasher, washing machine, etc. I really don’t want to put it in the septic system as it is a sand mound and I don’t want to have to redo it in a couple years. But, I will try to learn more before deciding. I also am going to get her a adjustable bed for her comfort in case she winds up having to stay in bed a few hours more than she’s used to. I appreciate your information, thank you!
Dear shooterkim,
Dont let them deny you the option of a presternal cath. My dad had surgery yesterday for the presternal cath. We found one surgeon in SC. He does 90% dialysis related surgeries. He was really nice and helpful. We are kinda having problems with our neph (there is only 1 in our town). He is in a lot of pain and hasnt been out of bed since yesterday. I guess he is so weak from his kidneys and now the surgery. He said his abdomen is hurting and not his chest. How is your mom? What is her kidney clearance now? We are about to start setting up the room so we are in the same boat. Please keep in touch and keep me updated.
Ashleigh
Shooterkim,
I have an 83 year old Mother who has been on dialysis for four months, the last month on the PD Cycler. She does not have the presternal cath. but is having no trouble at all (praise the Lord) with her “normal” cath. She is staying with me until she is 100% confident she will be able to handle everything herself - so far so good. She is determined to be on her own. We have gotten to the point where she does most, if not all of the set-up and connections herself. When she wakes up and disconnects, she is off to her place (still driving) and we won’t see her until that evening - very independent. She loves the cycler. It is much easier on her than Hemo (she has a bad heart as well), and she really doesn’t like “messing” with the manual PD treatments several times a day. I believe she will be ready to go on her own sometimes next week. The only concern, on my part I guess, is having her pick up and maneuver the 12 lbs. bags of solution, and connecting the tube to the bag (must use a little force to do so). But, she seems to be doing that as well - very determined as I mentioned. As far as her room goes, we have a table with wire basket drawers (for the supplies) set up next to her bed (a little higher than the bed), and space to put the boxes of solution. If push comes to shove, I can go over there once a week, or as needed, and move solution close to the bed table area. Again, I must stress as CJ has, the whole process MUST BE KEPT CLEAN - NO SHORT CUTS. Good luck with your Mother, it sounds as if she is “Determined and Independent” as we all hope to be when we are older.
For professional information about presternal catheters, have your nurse read this information. Dr. Twardowski is well known and respected among PD professionals and if your nurse has ever attended one of the Annual Dialysis Conferences (formerly known as PD Conference), she probably heard Dr. Twardowski speak.
– http://www.uninet.edu/cin2001/html/conf/twardowski/twardowski.html
– http://www.homedialysis.org/v1/research/articles/20050806.shtml
Here’s a description and how it works.
– http://www.homedialysis.org/v1/rotating/0705topicofthemonth.shtml
It’s important for medical professionals to keep an open mind. Dialysis technology is ever-changing and new things are learned every day. I bet your nurse doesn’t do everything the same way as she did 20 years ago. There have been changes in ways to prevent infection that have reduced the number of peritonitis episodes, changes in dialysis solution, etc. For example, at one time the only way people did PD was 4 manual exchanges every day. Today, more people use the cycler while sleeping than do manual exchanges.
Please print or share these weblinks (above) with your nurse. I hope she will look at it. It’s possible that with the presternal catheter more patients who can’t do PD using the traditional abdominal catheter (heavy patients, patients with ostomies, etc.) may be able to do PD and have greater control over their health and their lives.
Thank you Beth, I’ve printed out a copy for both the surgeon and PD nurse. I figure if I can at least bring it to their attention that there is another option out there, then maybe future patients can benefit? Right now my mom just wants the PD cath so she won’t have to go in center for 4 hrs, that she really doesn’t care where they stick it! I told her then at least let me make a dot on her waist where her pants ride so they can avoid that area? I wish I had more time to get her the presternal cath, but surgury is in the morning and it really boils down to her choice. Thanks again. Kim
Either catheter is good for most patients. It is a good idea though to let the surgeon know where she wears her pants and belts. Some people wear their clothing and belts at their natural waist while others wear their clothing and belts higher or lower. I hope the surgeon will ask that, but just in case, be sure to mention that.
Well, surgery went good. She was in a lot of pain yesterday but had to get up this morning at 5am to go to dialysis and seemed to be adjusting better with the pain. The surgeon met with us an hour before surgery and told us that the doctor (neff) told him no to the presternal cath. I knew his hands were tied because he basically, works for them. He did though, make the cath come out much higher than he normally would and was kind of excited about getting the chance to do something out of the norm. I think he compromised between the doctor and our wishes…lol I did make a mark on her belly showing him where the top of her pants were and made sure he saw it. I decided that the printed material that I had prepared for him is better off making it’s way to the Neff’s office rather than the surgeon. I’m not giving up trying to make them aware that there are other options and that they should at least consider it for future patients! But, before I talk to the Neff, I’m going to contact the doctor in MO, and also the mfr of the caths to find out who in my area uses them. I’d like to be able to show him some of his colleagues are already giving their patients a choice! Oh, mom’s dialysis was cut short today because her blood was clotting in the machine? We will know tomorrow if it is her cath, or the machine. We’ll see…
Well…things aren’t going according to plan! The day after the the last time I posted, she had another treatment that was cut short again due to her Tessio cath having clogged up. We went to the hospital and had it reamed out but she got a double dose of Heperin that caused her PD cath to start bleeding profusely that night. She lost a lot of blood and got a hematoma in her stomach. It’s all completely black and blue…moving up to today, the PD nurse came in on Monday to flush her cath and it took the liquid, but wouldn’t drain. She inserted some blood thinner into her PD to dissolve any blood that might be plugging up the cath from the surgury. Wednesday wasn’t good either! She flushed and couldn’t get it to drain so now we have an appt next Thurs with the surgeon…ugh! Why can’t things be easy? She, (and mostly I) want this PD thing to work in the worst way! Getting up at 5am three times a week to drive her to dialysis isn’t fun…
Has the surgeon put in lots of PD catheters? Has he/she had this happen before? Is it possible that in putting in the PD catheter the tip of the catheter or the stylet that rubbed on an organ or the peritoneum and made it bleed? Has the doctor done labs to see if she has a bleeding or clotting disorder? Does she take any kind of medicine (even aspirin) that may have thinned the blood and may have added to the effects of the heparin to make her bleed more?
Here’s a study that reports that this type of bleeding is rare and how the doctors who conducted this study treated this problem.
Adv Perit Dial. 2001;17:127-9.
Relationship between intraperitoneal bleeding, adhesions, and peritoneal dialysis catheter failure: a method of prevention.
Gadallah MF, Torres-Rivera C, Ramdeen G, Myrick S, Habashi S, Andrews G.
Department of Medicine, Divisions of Nephrology and Hypertension, University of Florida, Jacksonville, Florida, USA.
Intraperitoneal (i.p.) bleeding causes intense inflammatory reactions and extensive adhesions. The relationship between i.p. bleeding and adhesions is well documented in both animal and human studies. Over an 8-year period, we performed 362 permanent peritoneal dialysis (PD) catheter placements in 317 patients, using the laparoscopic technique. In the first 203 procedures (group I), we observed intra-operative bleeding in 12 patients (intra-operative i.p. bleeding seen laparoscopically, and significant blood-tinged dialysate irrigation). Patients were left dry for 3-5 days before dialysate instillation during the break-in period. During the break-in period, 7 of the 12 patients (58%) developed primary catheter failure requiring catheter removal (p = 0.03). All 7 patients underwent repeat laparoscopy for placement of a new catheter. In all 7 patients, laparoscopy showed significant adhesions. In the subsequent 159 procedures (group II), we observed intra-operative bleeding in 10 patients. We irrigated the peritoneal cavity repeatedly, until clear dialysate was obtained, then instilled 500-1000 mL 1.5% Dianeal solution (Baxter Healthcare Corporation, Deerfield, IL, U.S.A.) and capped the catheter. These patients were then placed on low-volume continuous cycling peritoneal dialysis [(CCPD) 700-1200 mL, based on the patient’s size, every 2 hours, until the effluent became clear]. Following this, patients underwent daily irrigation and PD fluid cell count, and were left with 700-1200 mL dialysate to dwell. The process was continued until PD fluid drainage showed no red blood cells or until the patient was started on routine peritoneal dialysis. None of these patients were drained dry. Compared with group I, no patient among the 10 in group II developed catheter failure (p = 0.001), and mean catheter survival was 31 +/- 7 months. Of the 10 patients, 2 developed exist-site leaks, both after clearance of red blood cells from the drained dialysate. None developed peritonitis. We conclude that intra-operative i.p. bleeding associated with significant blood-tinged dialysate irrigation may lead to local adhesions if the peritoneum is drained dry. The result may be loss of the PD catheter in about 60% of cases. Continuous irrigation, combined with a moderate amount of Dianeal solution left to dwell, or early initiation of low-volume PD, or both, prevents this complication.
Thanks for the information Beth, I’m printing it out and will give it to the surgeon. I don’t know how many PD cath’s the surgeon has installed, so I can’t answer that question. My mom’s stomach is still black/blue, but the pain is gone except for occasional sharp pains in the lower right side where your appendix would be. The Neph told her that he’s been in touch with the surgeon and the radiologist so they are expecting to try to figure out what went wrong. I plan on taking the surgeon a handful of information for his reference since he’s never done a presternal cath in hopes that he will pursue looking into learning how to place one. I want future patients to have a choice!
I’m glad to hear that your mother is doing somewhat better. Do they know if she has appendicitis?
If your mom needs to do hemodialysis, she might want to consider going to a surgeon who has experience placing presternal catheters since the PD catheter placement had some problems.
She had her appendix out when she was younger. I’m a little confused as to your statement about Hemodialysis and a surgeon who has experience placing presternal caths? I thought “hemo” was with the machine, and the presternal is a PD cath but placement is up higher. She doesn’t want to do hemo at home, she wants the PD. I just hope we find out that it’s not something major wrong that would prevent her from doing PD. I guess we’ll know more Thursday!
You’re right. Sorry for the confusion. I still would suggest that the surgeon be someone who has experience putting in the presternal catheter so the chances of any problem are less.
We met with the surgeon and he’s going to go back in on Tuesday to see what’s going on with the catheter. He hates that he has to put my mom thru another surgury, but it’s the only way he can get it cleaned up and flushed out and back working again. He suspects that there is still alot of blood clots that are probably plugging up the holes. I printed off all the information that you provided and told him that I would appreciate it if he took the time to at least read it…lol Told him the Neph was going to get a copy too! Thank you for all the information again.
Update: Surgury went good. There was a lot of clots that were plugging up the cath so he flushed, scraped, sucked it clean…lol Anyway, today the PD nurse came in for the first flush after surgury last week and it drained wonderful! She said she will flush again on Wed and that we will start training in 2 weeks. It was finally some good news for a change! Thank you Beth for being here for us, you are a wealth of information. Kim
You’re welcome. Glad to hear that things are working well now.
Hi all!..update on my mom’s PD cath. Things are not going very smoothly. I think because she wants this to work in the worst way, we have a black cloud over our heads? Since my last post, we went through training and started on the cycler Sept 1st. The ID were taking over an hour and causing her great pain in her lower right pelvic area. After a week or so, we went in and had the Radiologist run dye into the cath to see if it had moved and to also see what might be causing her the pain. They couldn’t do anything so the following week (9-19) she had surgery #3 to reposition cath and to remove all the adhesions. He said he put the cath in the center deep in the pelvic. I asked the surgeon about flushing right away rather than waiting a week and he agreed that that would be a good idea. I mentioned this to the PD nurse who adamantly told me no, to give my mom a week to heal…well, guess what happened again? A week later (9-26) went to have cath flushed and it was all clotted again. Filled her with 1300cc and got less than 100cc back…so, scheduled another surgery for 10-3 to suck out clots once again with the plans to start flushing immediately and the Anesthesiologist cut her throat trying to intubate her so they cancelled the procedure! Now, here we are 3 months later, still driving 3x week for hemo (which she’s already had 3 replacement caths in her neck from plugging up!) and she is so depressed with a sore throat, cut tongue and blisters on her lips! We’ve tried to flush in hopes to get it unplugged but after 100cc she is in excruciating pain? My next plan is to seek out another doctor and schedule surgery with a new doctor who will hopefully see what is causing her the pain…I figure her surgeon is so sick of replacing catheters that he’s not seeing what the real problem is?..whew! sorry for the long post, just getting so frustrated that I don’t know what to do! Thanks for listening
Oh, Kim, I’m so sorry to hear that your mom is having so many difficulties. It sounds as if whatever can go wrong has, in her case. And it must add to your frustration that you suggested her catheter be flushed early and it wasn’t. Often this does all go smoothly, what she’s experienced is not typical.
I don’t recall if your mom has someone at home to help her, but am kind of wondering if it might be time to think about trying home hemo instead of PD? Other folks who have more PD experience may also suggest hanging in there, especially if home hemo isn’t an option.