Bad News with Dialysis

[Sandysgirl]

Hello everyone. I am new here and hope to find good perspectives. I am a 40 yo woman from Battle Creek, Michigan. It's my Mom who is getting dialysis treatments. Here's her story....

She was just diagnosed with kidney failure last fall (type 2 diabetes) and it's been awful for her ever since. But she tries to keep a positive outlook on things. However, her hope has been squashed. So she was put on in-clinic dialysis last fall and has been trying very hard to adjust. Since we live in Michigan, this winter was terrible for her to get to her appointments. She had to drive in terrible snowstorms and icey roads at 5:30 in the morning. So she decided to look into home dialysis. She's been to many consultations and asked many questions. She finally decided to go for it. She had the surgery to implant the devise in her abdomen a couple of weeks ago. Healing from that has been awful... but she muttled through. The deliveries of supplies have arrived, her surgerical staples have been removed and she's almost to the finish line in her training. When they finally decide to tell her that she isn't a candidate for home dialysis. She's devastated!

They said that she has scar tissue, diverticulities and a "spagetti like" substance in her abdomen that makes it a wrong choice.

Her surgeon has been absolutely MEAN to her... in every way possible. When she went for her pre-op consultation, he offered no information, no suggestion that it may not work, or any possibility that there could be problems. They marked her belly with an X where the devise was supposed to be placed, but he didn't put it there. He yells at her in his office if she tries to ask questions. Now he's pretty much shrugging his shoulders at her and saying "tough luck".

My opinion is that she needs to try another doctor. Maybe another doctor with better skills and someone who cares could help her with some options to make it work.

So could someone help add perspective for me? Given the description of her issues, does anyone know of someone else who had these problems and got them worked out? Could the doctor be wrong?

Thanks in advance.

[Romona]

 
I think you should go with your gut and try someone else.

[monrein]

  I would definitely want another opinion.  This isn't a short term illness so it's important to develop a good (or at least acceptable) working relationship with the doctor.  Of course, surgeons aren't with us for all that long so if they're excellent at what they do but have personality deficiencies, it's frustrating but not the end of the world.  We need good nephrologists, doctors, nurses, dieticians and social workers though, ones who make us comfortable and who will advocate for us.

Good luck Sandy and your Mom.  Hang in there and don't give up.

[willieandwinnie]

Sandysgirl. I'm so sorry about your Mom. Go get that second opinion or even a third if you really want to be comfortable. Why in the world would they put her through all this if they knew her history.  You'll find most of your answers here and a very caring group. Keep us posted. 

[annabanana]

Welcome, Sandysgirl. I'm a caregiver, too, to my husband. I'd say get another opinion. I have found that I have to be as knowledgable as possible when dealing with all the docs...and this is the site that has helped me the most.

[flip]

When I first started this romance with CKD, I saw several nephrologists. All their opinions were different and it could be true in your case. I would definately get a copy of her medical records and go shopping.

[Adam_W]

  That stupid doctor needs an attitude adjustment  I"m on daily home hemodialysis (same type of treatment as in-centre, only done six days/week for two hours), and it is a good option if PD doesn't work. Find a good doctor who will actually listen to you and your mom, and don't give up. We're all here for you 

Adam

[David13]

It seems very wrong that someone in the chain of events didn't tell your mother she was not a candidate for home therapy until AFTER her surgery and home training.  What kind of program are they running?  You would think that the screening process would have taken place before they had put your mother through all of this.  Giving her (and you) the hope that home dialysis was an option seems almost crueler now than if they had done the proper screening at the beginning of the process and simply told you then that she was not a good candidate for it.  I think seeking out a second opinion is a good first step.  The people involved in the process thus far seem to not know what they are doing.

[Sandysgirl]

Sandysgirl. I'm so sorry about your Mom. Go get that second opinion or even a third if you really want to be comfortable. Why in the world would they put her through all this if they knew her history.  You'll find most of your answers here and a very caring group. Keep us posted. 

Well that's my question as well. I intend to go with her to her next doctor visit and ask this. They told her she was a good candidate for many reasons. NOW they're saying she has too much scar tissue and that the treatments could cause severe pain because of scar tissue. She's only had 2 abdomenal surgeries in her life(implanting the catheder was #3) So I don't see what it would be such a problem. The doc tells her..."I didn't think it would work..." but he NEVER told her that until now. He's a real %#$%^&%%^~!!!!!!

[Sandysgirl]

That stupid doctor needs an attitude adjustment  I"m on daily home hemodialysis (same type of treatment as in-centre, only done six days/week for two hours), and it is a good option if PD doesn't work. Find a good doctor who will actually listen to you and your mom, and don't give up. We're all here for you 

Adam

That's why I don't believe him. He's been a real jerk to her from day one. Like I said, he would get rude and raise his voice when she'd try to ask a reasonable question. He didn't offer ANY info prior to surgery, after surgery.... he didn't even bother to come talk to the family after surgery. Just left us sitting there waiting.

Specifically.... she asked prior to surgery...."will this work for me?" His reply was "who told you it would?" Her reply was the nurses etc who she'd been consulting with about the possiblities. He threw off his glasses, slammed them on the counter and said "well they're not the ones who'll get sued"... then he stormed out of the room without another word. She didnt hear from him again until she was in surgery. We still don't know why he didnt insert the catheder where the X was. What were his reasons? Could that be why it's not working?

So... I don't feel that he cares enough to make it work for her.

My Mom has been crying non-stop since yesterday.... she really had her hopes up about this.

Could you please tell me about the type of home treatment you have? maybe she could look into that possibility.

[Sandysgirl]

It seems very wrong that someone in the chain of events didn't tell your mother she was not a candidate for home therapy until AFTER her surgery and home training.  What kind of program are they running?  You would think that the screening process would have taken place before they had put your mother through all of this.  Giving her (and you) the hope that home dialysis was an option seems almost crueler now than if they had done the proper screening at the beginning of the process and simply told you then that she was not a good candidate for it.  I think seeking out a second opinion is a good first step.  The people involved in the process thus far seem to not know what they are doing.

Exactly! They shouldn't have got her hopes up for nothing. I've been reading and believe that there's options about this. Does anyone know of a good place to find information? I want to find out about this screening process and how it applies to her being told it won't work.

I really want her to get another opinion, but she's so upset that she's afraid to get her hopes up again.

[Ang]

hey  sandy     aboard,

hope  things  get   better  for  your  mum,  go  with  your  gut  instinct.

[Adam_W]

Could you please tell me about the type of home treatment you have? maybe she could look into that possibility.

It's very similar to what your mom does at the dialysis centre, but it's done at home. My treatment prescription and my machine are a little different from in-centre dialysis. Instead of three days a week for about four hours, I run six days for two to two and a half hours depending on how much extra fluid I need to remove.  Prescriptions can very from standard 3 d/w, 4hr, to five or six nights a week for around eight hours while the patient sleeps. The benefits of longer and/or more frequent treatments are better waste removal, and fewer "ups and downs" in how the patient feels. Fluid and diet restrictions are a lot less than on in-centre dialysis as well. The patient typically feels a lot better most of the time (I know I do). Your mom's doctor would work with you and her to determine what the best time and frequency would be. As for the machine, I use the NxStage System One, which is portable and weighs about 75 pounds, compared to a full sized machine which weighs between 150 and 300. Some home centres use a standard machine, including all centres outside the US. With a standard machine, your home would need to have electrical and plumbing modifications, which are sometimes (but not always) covered by the patient's insurance. The NxStage machine just uses a standard outlet, and a drain (which can be a toilet or a shower/tub drain). If the Pureflow SL (add-on that prepares the treatment solution for three treatments to save space) is used, you will need a place to hook up the water line, which can be a faucet, or under-sink connection. NxStage provides the fittings to hook up the line, and for the faucet, it's a simple matter of screwing the fitting in place. You would need space for the dialysis machine, a chair or bed, and space for all the supplies, which for the NxStage, take up a small closet and a little bit extra. Full sized machines require more space. Because it is the same type of treatment as in-centre dialysis, your mom wouldn't need a stomach catheter. She would just use the one she has now, which I'm assuming is a catheter in her neck or chest (correct me if I'm wrong). If she does end up using an arm access, you or someone else will have to learn how to put her needles in, or if she is able, she can learn to do it herself (it's actually pretty simple once you learn how). With the catheter, there are no needles involved, but the risk of infection is higher. With home hemo, usually the patient has to have a partner train with them to do some or all of the treatment, depending on what the patient is able to do themselves, and monitor the treatment (although you wouldn't have to hover over the machine constantly, usually the partner is supposed to be in the same house, and check up on the patient periodically). I dialyze 100% myself (including putting my needles in), but I usually do have someone else home. Home hemo is a bit more complex than the treatment that your mom is trying for now, but once you learn it and have done it a few times, it becomes second-nature. There is a common saying that if you can drive a car, you can do home hemodialysis. Sorry I've just blasted you with all this stuff to comprehend, but I'm an advocate for any kind of home/self-care dialysis, and once I get going, usually there's no stopping me. The photo in my avatar is me on my dialysis machine, but here's a bigger picture so you can see things a little more clearly. If you have any questions, there are a number of home hemo patients and caregivers on this site, and you can go to sites such as www.homedialysis.org, www.nxstage.com, or www.ilovenxstage.com (started by the creator of this site). Well, I think thats about it. I hope your mom does well on whatever treatment she has, and please give that "doctor" one more  for me.

Adam

[Sluff]

Welcome Sandy to ihatedialysis.com

It is good to see you here asking questions. Your mom is lucky to have your concern for her.  This site only exists because of it's members, they have made IHD what it is today. Lots of information and people sharing their personal experiences among the many pages of IHD.

The creator (Epoman) left his legacy here for all of us to benefit, so please continue to read, ask questions, take time out to have a little fun occasionally and post often.

Sluff/Admin

[petey]

oh, sandysgirl, I feel so for your mom.  She definitely doesn't deserve to be treated like that.  I say borrow Kitkatz's big stick and  that mean doctor.  Then, find her another one today!!!

Adam W gave a good account of home hemo dialysis.  It's wonderful for my husband (the patient) and me.  Good luck to you both -- and welcome to IHD.

[twirl]

OMG     screw that doc and find another one   compassion never hurt any of us     "tough luck" WTH 
this dialsys is bad enough; she does not need it thrown back in her face
Please complain and report that jerk
your mom needs better
a rude doc is one thing but an incompetent rude doctor?
he wants to intimidate her so she is afraid to get any information
he can cover his mistakes if she is afraid

[paris]

   glad you found us.  Find another doctor!  I  changed nephs because the first one was kind of like your Mom's and have one now who listens and works with me.   I am so sorry for all that your Mom has gone through.  This is tough enough without having a bad nephrologist.   Keep us posted. 

[lola]

  Find another Dr I can't imagine not having our Dr on our side

[ODAT]

Hi Sandysgirl,  my mom is pre-dialysis and I've gone with her (take turns with my sister) three times to her neph and we all love him. Your mom deserves to love her doctor too. She will see him often and needs a good healthy relationship. Mom hasn't even gotten her access yet. I know there are all kinds of questions that come up and your mom should be free to ask without feeling stupid or that she's wasting the doc's time. Good luck and visit IHD often!

 

[Sandysgirl]

    This is tough enough without having a bad nephrologist.   

Thank you everyone for the support and the warm welcome. Could you please help me understand these doctors? There's the doctor who has been taking care of my moms kidney health... that's the nephrologist, right? He's been fine. The doctor who did the surgeries is the guy whose been so mean to her.

Which of these doctors decide that the catheder in her stomach will not work? Which of these doctors has this area of expertise? I keep asking Mom but she doesn't want to discuss it much yet. My question is... WHICH doctor could help with the options? It wouldn't be a surgeon would it?

[David13]

I believe that the surgeon and the nephrologist should have been working together to determine if your mother was a good candidate for peritoneal dialysis.  Of course, sometimes it appears to be almost impossible to get two doctors to actually talk to each other. Both of them should have looked at her past medical history and attempted to determine if there was anything there that might have presented a complication to successfully performing dialysis.  Good peritoneal dialysis is dependent upon a good peritoneal membrane to act as a natural "filter" for the waste products.  If the doctors and other members of the medical team were aware that your mother had numerous abdominal surgeries and scar tissue that may have compromised her peritoneal membrane, that should have been an immediate red flag to them.

[kidney4traci]

I believe the surgeon is the bad guy here.  He should had done some mapping of some sort to test your mom's ability to receive the pd catheter.   That's what they do for a fistula and I can't see why they wouldn't have something similar with PD.  Someone else can chime in here maybe on that.  Even so, his manner's are in excusable and I would report him to the state board.  Seriously, he still has to speak to your mom and give some sort of explanation.  Your neph will be the one you really have a relationship with form here on out, I haven't seen the surgeon in three years.  They have a big head usually anyway.   Sorry she is having problems, stick with it until that is resolved.  There are other surgeons too, maybe someone else can help you instead of him?  Usually Dr's work in teams.  Just a thought. 

Welcome to IHD!! 

[Psim]

I'm pre-dialysis and have been looking into getting PD (the same kind your mom hoped to have). Here's how it worked for me: My nephrologist (the kidney specialist) told me what the different kinds of dialysis were, and then sent me to the surgeon. The surgeon examined me, and HE was the one to make the decision whether I was a good candidate for PD or not. I really don't understand why a surgeon would go ahead with the operation if your mom was not likely to be able to do PD. It's supposed to be the surgeon who decides if you're physically able to do it, before the operation.

I really hope you get this figured out and that your mom is able to have some kind of home dialysis.

[Sandysgirl]

I'm pre-dialysis and have been looking into getting PD (the same kind your mom hoped to have). Here's how it worked for me: My nephrologist (the kidney specialist) told me what the different kinds of dialysis were, and then sent me to the surgeon. The surgeon examined me, and HE was the one to make the decision whether I was a good candidate for PD or not. I really don't understand why a surgeon would go ahead with the operation if your mom was not likely to be able to do PD. It's supposed to be the surgeon who decides if you're physically able to do it, before the operation.

I really hope you get this figured out and that your mom is able to have some kind of home dialysis.

Yes! This is what I was looking for. So, prior to surgery, the surgeon KNEW she had scar tissue. Apparently, it wasn't enough to say any that it would cause problems.

So, I've been talking to Mom some more to get more details to research. She says that the surgeon didn't realize until DURING surgery that she had a lot of fibrin (strings of protein). Which he said he tried to remove some of. But it was at that time when the surgeon decided her chances for success were slim. She started her training. The first day, everything went as planned. The second day, is when the nurse couldn't get the fluid to go in. She made a call to the doctor who then told her it was over. Without looking at her or doing any testing, he decided over the phone that my mom had no chance of doing PD. I don't think that sounds right. Does anyone else?