New Here

Hi, I suffer from Sle Lupus. I’ve had this since I was 15. I was told I would die within 6 months to a year. I am now 42, I feel blessed. If it was’nt for my strong will to survive, I wouldn’t be posting here today. Lupus is a Fatal disease. My kidney’s finally are failing. I was suppose to start Peritoneal dialysis in a month but 2 weeks ago, I had a heart attack. I never dwelled on my illness and was always strong willed but I must say this scared the heck out of me. My right artery completely closed and they had to put in two stents. There is so much more to this story but I will share more as we go. My fiance` Guy will also be posting under my name, for he will be my In-home caretaker for home dialysis and he wants to learn as much as he can to help me the best he can. I hope we can understand dialysis more with knowledge given from this sight.

Hi Karen,
Welcome to Home Dialysis Central and our message board for people who are doing PD and the ones who care for and about them. As a renal social worker, I’ve known a number of people with lupus who were on dialysis or had transplants. It sounds like you did have quite a scare. Hopefully you’re on the mend now. If you haven’t checked out the rest of Home Dialysis Central, you might want to start at our home page and read anything that is interesting to you. One thing you might enjoy is reading the patient profiles. I think I remember that there are people who also have lupus who have allowed us to publish a little about them to help others like you. Good luck with your training.

I just had an abdominal pd cath placed on 11/19 and it has been a horrific ordeal for me. I also had recently acquired my BSW, so I NEED your help, knowing the value of good social work and all. I feel as if I have really fallen through the cracks at both my surgeon and nephrology practices and am scared and beginning to get a bit frustrated and almost angry. First of all, I was only offered the option of an abdominal cath - never heard of a presternal one until just a few minutes ago. I love baths in the jacuzzi tub of the new house we bought last year and love hot tubs on vacation - just found out that those are part of my past at this poitn as well!!! No one has even told me this yet and I have alreeady been to the PD nurse for the first flush of my cath. The surgeron also told me to take off my badages after 36 hours and that I could shower after 48 - now I found out from the pd nurse that I shouldn’t have done either until she saw me to remove the bandages in a sterile environment!! I am so angry and now have an infection at the site that my nephrologist had to culture and treat me with mega antibiotics for aftter the surgeon’s triage nurse had told me I wouldn’t know what an infection looked like!! Any suggestions other than to pray, which is all anyone in my support system seems to be able to say at this point?

I’m sorry that your introduction to PD has been so difficult. I wish that you had had an opportunity to talk with the home training nurse before you had your surgery for the PD catheter or if you did talk with him/her that there was a discussion of post-surgical care of the catheter, bathing, swimming, jacuzzis, etc. Unfortunately, questions about lifestyle and quality of life may not part of discussions with medical, surgical, or even nursing personnel related to treatment for kidney failure and prospective patients may not meet with their dialysis social worker until they actually start treatment. Too many patients come to kidney failure without education about treatment options and even options within those treatment types down to the access types and locations.

I’m not that surprised that no one mentioned the presternal catheter as it’s not as widely used as the abdominal catheter. A growing number of surgeons are learning about them and having good results placing them in patients who do well with them. And patients who hear about them are asking for them. Some patients who like to bathe are still told if they want to continue to do that, they’ll need to do hemodialysis if those treating them have never heard of the presternal catheter. Be sure that your treatment team understands how important using your jacuzzi is to helping you have quality of life. And if they tell you you’ll have to switch to hemodialysis to do that, get a second opinion.

Even with a presternal catheter, you’d need to be careful that jacuzzi water doesn’t spash onto the catheter or exit site. Your training nurse may suggest using a barrier bandage each time you use the jacuzzi to keep any bacteria that may be in the water from causing an exit site or tunnel infection. You might want to share this article about presternal catheters with your treatment team.

The presternal catheter is made by Kendall which is now part of Covidien. You or your dialysis team may be able to call the company and find out what hospitals order them and what surgeons in your area have experience placing them.

There are multiple articles about presternal catheters and success with them in patients that might not be good candidates for abdominal catheters, including those who like to take baths vs. showers, those who are oveweight, babies in diapers, people who have ostomies, etc. Google “presternal catheter” or look for “presternal catheter” on to find abstracts of research articles.

I suspect your goal with PD is to be able to get a job with your newly acquired BSW. I feel confident that once you get these kinks worked out you should be able to do that. There is a tremendous need for social workers today and I wish you well in your new profession. Learning all you can and balancing your life between work and fun should help you have the positive attitude that is so important to anyone’s success in living with any chronic illness, including kidney failure.

I’m glad you found our message boards and our community. Hopefully other PD patients will let you know how they overcame some of the issues you’re having to overcome.

Hi Lynn,

It certainly sounds as if your surgeon and the nurse were not communicating–and you were caught in the crossfire. Unfortunately, I can’t imagine any scenario in which you would have disregarded the doctor’s advice and avoided that infection. Most of us are socialized to do what we’re told by doctors, especially after surgery!

But, going forward, there are things you can do. Asking questions is a good start, because it’s a clue to your care team that you want to be involved in your healthcare. Flat-out telling them that you want to be involved can also be helpful. If I were you, I would ask:
– How they could improve their communication to prevent these sorts of “falling through the cracks” incidents in the future.
– Whether there are precautions you can take to use your whirlpool tub, even sometimes. For swimming in the ocean or a private pool, a PD catheter can be covered with a waterproof dressing–a Tegaderm® or an ostomy dressing. This may be possible for you, too, although hot tubs (with their standing water) tend to grow bacteria and are generally not recommended.

Also, while PD is a good first treatment choice for a lot of reasons, if it doesn’t turn out to suit your needs and your lifestyle, you can switch. Some people use PD while they wait for a transplant, other change to home HD. If you like being in charge (and feeling better) we wouldn’t recommend changing to standard in-center HD, but some clinics offer nocturnal in-center HD, where you can get your treatments 3 nights a week while you sleep.