Getting my buried PD catheter tomorrow

[lrgh]

So my nephrologist thinks I'll be starting dialysis within six months, and suspects sooner than later. I've decided to do PD, had a surgery consult, and it all happens tomorrow.
My boyfriend keeps saying he'll have a t shirt made for me: Warning! Buried catheter.
I'm mostly ok about this.....I still feel pretty good, but late last year when everything took a turn for the worse I had a lot of problems with fluid retention and breathing and mobility and pretty much everything. It taught me this is serious stuff, and I'm going to do whatever I need to to keep up my quality of life.
Anything I should know about what to expect with life with a buried catheter?

[Charlie B53]

You do NOT want to let the fittings get wet.

It can be a P.I.T.A. to cover, but I used 'Press n Seal'   Tear off a strip a bit longer than the length of the cath, lay the piece against my body with the cath laying on top of it and about a 1/4 to a 1/3 off center, fold the bottom up over the lower portion of the cath,  fold that smaller side over the cath, carefully roll the cath and plastic until it turns into a tight roll.   You may have to hold the works out in front of you to unroll the twists in the uncovered cath hose so you can finish rolling all the plastic closed.

Squeeze the open end tight to be sure that it is sealed well.

Soak, shower to your content without worrying about getting the fittings wet inside.


You will soon learn how to bandage your 'site'.

I had problems as that area on me is numb from prior surface nerve damage.  I never felt it when the cath pulled against the site and elongated the hole/opening in my skin.

My PD Nurse taught me to make a small loop of the cath hose and lay it immediately on top of that gauze pad such that the large piece of tape that covers everything also covers that loop.  The large area of hose contacting the hose makes it VERY secure such that even a hard tug cannot cause any movement of the hose at the actual site opening.


I've been on PD almost 3 years now.  It works fine and I am no longer sick from CKD.

[cassandra]

Lots of good luck and strength tomorrow Irgh

   

Love, Cas

[kickingandscreaming]

I had what was then called either a "buried" or a tunneled catheter installed about 6 months prior to needing to start PD.   My buried catheter turned out to be nothing but trouble.  By the time it was unburied it was full of fibrin from just sitting there for so many month, unused and unflushed, and wouldn't work properly.  I had to go on in-center HD because of that for about a month.  I needed to have a second PD catheter procedure to clean the damn thing out.  And it has been on and off functional because of fibrin clogging up the catheter holes.  I am a fibrin producer and now need to use heparin with my PD.  You may not have this issue, but I personally would never recommend the buried route since my experience.  Then again I don't know which kind of catheter you're asking about.  I hope your experience is better than mine was.

[Charlie B53]

My buried cath hasn't had any problems, yet.  But I started training shortly after the surgery and was using it as soon as the incisions healed.  There was no real time for anything to grow and plug it.

In some ways have the surgery long ahead of starting dialysis is a very good idea IF you will be using HEMO.  But as kickingandscreaming has found out, having a PD cath put in long before starting can turn into a problem if left unused for too long.

How long will depend on your individual system.  If you are a rapid healer, I would expect that time to be much shorter.   You may want to consider asking your Neph just how soon are you expected to start PD.  If that is longer than a month then possibly ask if your Clininc will 'flush' your cath at least weekly to ensure that it remains open and clear of fiberin.

[lrgh]

The buried catheter is still fairly tender/uncomfortable. Does it ever start feeling...normal? I'll ask my nephrologist about the possibilities of fiber growth. I was told about a month ago that they expected me to start dialysis within six months.

Also, I haven't been eating much since my surgery ten days ago but I seemed to have gained ten pounds....iss that normal? I would expect the catheter would weigh something, but ten pounds?  I think I've been retaining more fluid lately in my legs so that may be part of it......I have not started dialysis yet so it isn't the calories from the fluid.

[Charlie B53]

As my kidneys worsened I gained water weight.  My legs were immensely swollen.  Within the first couple of weeks on PD I lost 40 pounds, my legs finally look 'normal' again!

It wouldn't surprise me to learn this is very common as the kidneys filter out excess water from our system along with the toxins.

[Deanne]

I'm curious. Why have a PD catheter put in so long before it will be used? Mine wasn't put in until a couple of weeks before I started dialysis. It isn't like a fistula that needs time to mature. It only needs a couple of weeks to heal before using it. Isn't burying it in advance just making it so you need a second surgery to make it usable?

[Charlie B53]

I started training and using my cath as soon as the major healing ws completed.

It may be possible the Neph anticipates an earlier start depending on the patient continued rate of decline.

There is always the possibility of fibrin formation if the cath is not used soon enough, as well as what you mentioned, leaving the cath totally buried until Dialysis becomes closer would require some second surgery.

The patient does have the option of starting D earlier, not waiting until the sickness becomes problematic.   I started early, the immediate water loss and the end of leg swelling were almost unimaginable.  It had become such a daily burden having my legs all puffed up, leaking, the large sores.  It was great not to have those afflictions any longer.

I would highly recommend anyone with similar problems consider starting PD earlier.  It has made such an improvement.

[lrgh]

I live in Austin, which I was told was where buried the catheter procedure originated. Possibly for this reason it more "popular" here? I was told that having the surgery early would give the area time to heal and that the second surgery to make the catheter accessible would be fairly simple.  Last month I was told that I would start dialysis within six months, but expected it to be sooner than later. I have somewhere between 12-14 % kidney function and have a lot of nausea, occasional shortness of breath, and a general run down feeling. I had someone come to m house today and review whether I was set up for PD (basically checked to see if I had the storage space and to see how close I slept to the bathroom.)  I am currently unemployed/on several months full severence following my office closing altogether so there might be advantages to starting a little early before I find another job and immediately have to take time off for dialysis training.  I am going to go over these factors when I see my nephrologist the end of the month.
Thank you for your comments/observations, and I welcome more!  How long should I expect to be out of work while adjusting to PD?  Would I be able to interview and look for work while starting PD? I'm assuming I would?

[kickingandscreaming]

I live in Austin, which I was told was where buried the catheter procedure originated. Possibly for this reason it more "popular" here?

Certainly NOT the case in Boston (that medical mecca).  I could only find 2 surgeons who had any experience with the procedure-- and then, not much.  The second "surgery" is very simple and is an office procedure with a local anesthetic.  No big deal. I think it adds a couple of new scars to your belly as they don't go back into the original incisions for the "reveal."

How long should I expect to be out of work while adjusting to PD?  Would I be able to interview and look for work while starting PD? I'm assuming I would?

Starting any new routine is disruptive, and takes some time to get comfortable with.  I see no reason why you couldn't interview for a job while adjusting.  Assuming you are starting on manual PD, you will have 4-6 hour intervals where you are "free."  You will have to find a job where you can do exchanges on site, or a part-time job that fits it with your tethered PD schedule. If/when you switch to the APD (the cycler), you will have your days free.  Fortunately, I work at home, so that isn't an issue for me.  But there are still many times when I've had to juggle appointments and exchanges to fit together.  Believe me, it is MUCH easier to have a life with PD than with in center HD which completely takes over your life and schedule.  I know others are more sanguine about it, but not me.  If it comes to my needing to switch to in center HD again, I'm outta here.

[Deanne]

I only took off the time from work that was necessary for training. I think it training lasted one week. My neph had them train me on manual exchanges and the cycler at the same time, so I only did manual exchanges for a couple of days, just so I knew how to do it.

I work from home and I know that helped, but mostly because it took longer to get everything done in the mornings, not because I was unwell or unable to drive to work.