I am so distraught. Yesterday our 34 yr. old dwarfed mentally retarded man’s catheater was removed. He had been on almost continual antibiotics for reocurring staph infections in his peritoneal cavity. Normally the infection is held in check with the antibiotics. This time he had a lot of pain. This time he had draining issues on his cycler. Now he is left to hemo, which he did for about 12-13 yrs. before the cycler and became so unmanagable behaviorally one hospital,(Arnot Ogden in Elmira, NY), refused him further treatment to him and basically left him out to die. We went to another hospital farther away that he actually did hemo with for years. They supported our decision for the home paratineal dyalysis. He is very dedicated to his nightly treatments. We feel as if they have pulled the plug, severed his life line. Now his very survival will be left to him cooperating taking the hemo. The nurse promised me they would not do what the other hospital did and toss him out on the street. They also support our decision not to want to institutionalize him far far away to live out his days super drugged just to have hemo and let “nature take it’s course”, but we do not want him to die…other than his behavior he could live! He has been a part of our family since 1984. A transplant is not a consideration due to his multiple issues. Decades of history have shown our man not to be cooperative long term, maybe short term…he must be super drugged with a multi drug cocktail to an unconcious state to get this done over the long haul. He must take a medical travel bus that is not equipped with staff to manage behaviors or him in an unconcious drugged state. I feel… he is doomed. We do not want him to die! Why did this have to happen? The home peratoneal worked great for him, he was having excellent clearances and he was devoted and cooperative with it! I want to scream!! His bad behavior will get him in the end, and the end may be very close!! I am sickened. This hospital team has been wonderful and supportive, don’t get me wrong…I am sure they feel they are acting in his best interest, but…this was the only hope he had left!
I’m so sorry to hear this, I know it was your worst nightmare. It’s good that you’ve found a clinic that will be more supportive of him. Hemo is hard on him, but it’s possible that if he can tolerate it for a short time that the doctors could place another PD catheter and he could try PD again.
If the abdominal PD catheter was a problem, it may be that a presternal catheter (which goes in the chest but allows PD) would be less likely to get infected. You can read about presternal PD catheters at: http://www.homedialysis.org/v1/rotating/0705topicofthemonth.shtml. Print the article out and bring it to his doctor–it has all of the references that would allow a physician to look up the papers and learn about presternal catheters.
This was his 2nd catheater. The staph, and he is a carrier, colonizes in the tube in his paratenal cavity. I will email the link to the PD nurse now.
Thank you. Yes, worst nightmare!
Oh, a staph carrier. Presternal catheters are less prone to infection; it may be that with prophylactic antibiotics, it might be possible for him to do PD again, but his doctor and the PD nurse would know best.
I know that Beth and I have mentioned this before, but your ward may not have tolerated hemodialysis because it was done in the center by strangers. He probably doesn’t cope well with changes to his routine (you would know this best). Is it possible that he might be able to handle home hemo if you and your husband were the ones helping him, and he was at home, which is familiar for him?
Our man does best with my husband. I am an authority figure and he gives me a hard time. He is best with my husband. Home hemo is not offered here yet
3X9G8XRobert is treated in Sayre, PA…Robert Packer Hospital. We live in Painted Post, NY. Elmira, Arnot Ogden, refused to have him as a patient because of his bad behavior.
Daily home hemo is offered at the Comprehensive Dialysis Center of Western New York, 6010 Main St., Williamsville, NY (716-631-4700), which is 122 miles (about 2.4 hours) away from you.
Conventional home hemo is offered in New York at DCI Syracuse, 1127 E. Genesee St., Syracuse, NY (315-473-5100), 103 miles away (about 2 hours)
In Pennsylvania, DaVita Bradford at Home offers conventional, daily, and nocturnal home hemo. It’s at 655 E. Main, Bradford, PA (814-362-7417), which is 110 miles (1.75 hours) away.
Those places are all too far away for me to transport him to. Buffalo I know is a 3 hour drive one way. The hospital said if our man refuses to get on the van frequently his transportation will cease. If he refuses to take dialysis regularly a referral for Hospice can be made.
They’re definitely too far away for routine, 3x week treatment, but once you are trained for home treatment, you’d only have to go there once a month for clinic visits. It’s an up-front investment that saves a lot of travel time later.
I don’t know. I have others here I care for. I can’t get away. I would need to rent a car and do not have the $$ for that and I work at home and can’t afford to miss work. How many days training is this? I just can’t see this being realistic and if has to come with me I doubt he’d cooperate.
I just read 6 weeks of training! He will be dead in 6 weeks!! I can’t leave here for 6 weeks! He would not cooperate to go! To go to Sayre I usually have to give him Haldol while there for his PD visit and have 2 security guards hold him while I inject him! I would lose my business in 6 weeks! This certainly is not a doable optio
The length of training depends on the machine. Some people have been trained to use the NxStage machine in as little as 2-3 weeks. I do think he would need to go with you, though. Do you have respite care available to take care of the others you care for, in case you become ill and can’t be there? I know this isn’t an easy option to work out in your case, but it’s the only other option besides PD which he can’t do right now, and in-center hemo, which he doesn’t tolerate.
Geesh. I have limited respite and it is expensive. I do not have 2 to 3 weeks of savings to live on and pay the bills. We live week to week. I would have the expense of a car rental and gas and that would be a few hundred too! We are pay check to pay check…I don’t see how I could do this. I do not have anyone here to get my daughter to her classes. If I get sick the ship sinks…we have no help. In the mean time our man will not cooperate…he went bazerk after treatment yesterday and did not come home.The biggest factors are my business (livelihood), a car rental, gas & transport for my daughter.
I just thought of another obstacle…if our man refuses to get up and out of bed to go to his day program or dialysis , I cannot leave him alone all day and have no respite that would come into our house and stay with him, all my respite is out of the home
Bradford., PA …callinging me back Monday.
Williamsville, calling me back later today.
8-12 weeks training, our man would have to come with me, no short cuts she said.
Car Rental,(Hertz with AAA discount), 10 weeks: $2,899.00 + gas
Unfortunately, Beth is not available this week, because I’m sure she would have some ideas for you. If I am understanding the situation correctly:
1). Your ward can’t do PD any more due to the staph infection in his catheter
2). He does not tolerate in-center hemo and has been kicked out of a center
3). If he can’t tolerate home hemo, he will die
So, it seems to me that the choices are either to ask for a Hospice referral and allow him to pass away, or figure out a way to overcome the barriers to home hemo.
As far as home hemo barriers, I believe Hertz is usually the most pricey car rental. Try Orbitz, they have a car rental search engine that finds all the options. Or, perhaps a friend could loan you a car so you only need to pay for gas. Or, put “cheap car rental” into Google.
There may also be social services in your community that you have not yet accessed for the type of crisis you are having now. Have you talked with the Social Worker in your ward’s dialysis center? He or she may know about community resources, respite help, etc. that you could use. The American Kidney Fund provides direct financial help to patients and has a fund to help with home modfications that are needed to do home hemo. You don’t have to do this all yourself, there should be some sources of assistance. In our phone book, there is a “First Call for Help” number that puts you in touch with someone who knows what all the Social Services resources are. I don’t know if your community has something like this, but at least talk with the Social Worker.
Yes, except the staph is in his body always not just the catheater. It will chronically come back as it did even with a catheater change.
I have found Hertz to be the cheapest over Avis and the other rentals in the area. I need to make a living and do not have 8-12 weeks to leave my business, I have bills to pay.
All avenues for respite have been exaushted over the years.
He needs to be treated with hemo at the hospital to survive and that means if it is against “his” will so be it, he has no clue what he is doing to himself. Yes the Elmira hospital tossed him out on his ear. This hospital will not force him to have hemo.
Yes, they have spoken of allowing him to die which is a waste because he is healthy other than dialysis! He does not have to die! I will reread your reply later and see if there are some ideas I have not exaushsted.
Thank you for trying to help.
What we NEED is someone to come to our house to train me for home hemo! Any ideas on that?
That’s a very good–and unfortunately very cutting-edge idea. I’ve heard folks talk about it, but am not aware of anyone who is doing this yet. It really does make sense to train in the home where you’d be doing the treatments. I suspect that in the next 5 years or so, we’ll see this happening.
There is a unit in Binghamton that trains in 3 weeks. They are calling me tomorrow, the nurse was not in. The Williamsville clinic gave me the info. Binghamton is about 75 miles. I sent the car rental fee to the case worker along with what I would lose in wages to close up shop for 3 weeks…my bills must be paid. The case worker sent the info. to the DDSO…it is a very long shot, but what do we have to lose for asking?? Also no guarantee our man will cooperate and come which means I 'd be stuck home with him…I don’t know…the in home training would certainly save his life…unfortunatley we have no time to wait.