Newbie Family Member

[lilsis2018]

Hi Folks!  Thanks for letting me join -- I've been reading some posts for several months & have learned some really helpful stuff but just recently decided to join to ask some questions.  This whole thing has been completely overwhelming, especially since I live in a different state, and I'm still struggling to understand the finer points . . . and some of the bigger points!

In a nutshell, I'm here for a family member who isn't very good about advocating for himself.  As is common, I suspect, his history is complicated:  he's been diabetic for a couple of decades & was diagnosed with Stage 3 CKD a few years back.  He had a life-threatening health crisis before Halloween last year that resulted in an extended hospitalization following open-heart surgery.  Initially, they thought he had an acute on chronic CKD situation and might only need HD short-term, which they started several days after surgery.  Unfortunately, his kidney function hasn't rebounded as hoped, so he's remained on clinic HD 3 times a week since then -- he lives alone so home HD apparently isn't possible.

Earlier this year, he underwent various vascular studies, but neither his arms nor legs were appropriate for permanent dialysis access, so he's had the same Permacath with no issues.  Dialysis clinic staff (one of the US nationwide chains) has been really great in some ways, not so great in others.  Before the vascular studies, they put the "infection risk from the Permacath" fear of god into him, which I wish they wouldn't have done because you really cannot unring that fear bell, you know?  Also, since he's highly motivated to get back to work, I had him ask about PD back in January when it looked like dialysis would be ongoing -- they scared the dickens out of him about the infection risks of that, too.  <sigh>

Moving forward, he decided on PD in late February, the surgery couldn't be scheduled until April, and he was hospitalized for 11 days for that.  <sigh>  The surgery itself was uneventful, but he's on warfarin, and since a Lovenox bridge isn't approved for dialysis patients, he had to be hospitalized 5 days in advance for a heparin bridge (he had both DVT & PEs post-op in October) & then had to remain hospitalized until warfarin restart was back in the therapeutic range.

Then, the dialysis clinic has been perpetually short-staffed on the PD side, so his training has taken FOREVER -- he's been out of the hospital since late April & it's looking like this tomorrow might finally be his last HD session.  Fingers crossed that PD works for him!

So, that's an abbreviated introduction :-)  As I mentioned, I've been reading some of the posts for the past many months & now that I've taken the plunge & actually joined, I suspect I'll have some questions in the appropriate forums.  I hope I've read all the appropriate participation rules -- if I make a mistake, please let me know.  I'm very grateful y'all are here although I'm sorry anyone needs to be here.

One anecdote I'll share to let y'all know how very much I appreciate the real-life info here:  when my family member was finally discharged back in December, the dialysis clinic staff told him he absolutely could not shower (or bathe) with the Permacath, which was just unacceptable to me -- while he was in a rehab facility, they used Tagaderm (which gets real expensive really quick) to tape him up so he could shower.  The dialysis clinic was Not Happy when I told them that & said absolutely nothing other than sponge baths & washing his hair in a sink (which wasn't possible from a balance point because his foot was in a flippin' cast).  From reading here, I knew that people with Permacaths do, in fact, safely shower with proper precautions, and I learned about much less expensive solutions besides Tagaderm (we went with cutting Ziploc freezer bags to size after finding things like Saran Wrap too difficult to keep from sticking to itself).  I had some work done with his tub to make getting in & out with a cast easier (glass tub doors removed & replaced with a curtain, grab bars installed in & out of the tub, shower chair, etc.) and with careful taping up of the Permacath & a shower cast protector for his foot when needed, he's been safely showering with no issues :-)


Thanks,
LilSis

[MooseMom]

Welcome to IHD, Lilsis!  Are you perhaps talking about Bigbro here?  ha

You have raised so many issues that I'm sure IHD members are going to flock to this discussion and offer all kinds of advice, most of which will probably be contrary to what the clinic has decreed.  With the newest technology available, it IS possible to do HD at home if you live alone, but clinics are reticent to tell their patients this.  With your family member's other health issues, home HD probably isn't the best idea.

However, you've seemed to have cracked the whole shower conundrum!  Dialysis patients and their family members can be very resourceful!

Please do let us know how he gets on with PD.  I hope it works for him and will improve his overall health.

Please feel free to ask any questions.  In no time, you'll be the one providing answers and ideas to new members!  Don't worry about asking question in the "wrong place".  A moderator can always move it.  The important thing is to feel comfortable ASKING in the first place.

We have an extraordinary pool of knowledge and experience here.  We are all so glad you decided to join and that you are allowing us the opportunity to help make y'all's life a little bit better!

[Charlie B53]

Welcome to our extended IHD "Family".

We have a number of Caretakers and Family members that are NOT the Dialysis patient, so you will fit right in. 

You nailed it when you said how the clinic tries to put the FEAR into patients, but you have to remember that infection IS are very real concern.  Taking the utmost care to prevent infection is critical, not only with his Perma-Cath but also with PD.   Infection prevention is very high in his training program.  He CANNOT skimp as even one lapse will have in in the ER long before morning.

Sink bathing sucks, but after 5 years I can admit I am very good at it.  Finally using my fistula I find it strange to be able to get into the shower.

Ask away, that is what this place is all about.  We live to help each other through this.

Take Care,

Charlie B53

[lilsis2018]

Thanks, MooseMom -- I appreciate it.  This is a new world for me & a whole new world for my BigBro.  Back when dinosaurs walked the earth, I had friends on HD & even PD (and had  a wee bit of medical training), so I wasn't starting completely from Ground Zero like my brother did.  It was because I had several friends who successfully worked while successfully doing CAPD at work (doing the exchanges in bathroom stalls they sprayed, wiped, sterile pads, masks & gloves, etc.), I suggested PD to my brother rather early.  The dialysis chain told him it was never EVER acceptable to do exchanges in a bathroom specifically or away from home generally because of germs & the inability to shut off HVAC systems away from home, but he could do them in his car.  Go figure -- I suppose it's entirely possible the five friends I had who did their exchanges in bathrooms at work (different places:  public library, college admin building, retail store at mall, restaurant, insurance office) for many years were just incredibly lucky.  The clinical staff, though, had no answer as to how he was supposed to walk 1/4 mile to his car & get through at least a half-dozen (locked security) doors and still be clean enough to just use hand sanitizer.

Another surprising thing for me was that dialysis has become such a big business, which is a double-edged sword in a lot of ways, it seems to me.  It's great in a lot of ways, but I've been kind of shocked that there seems to be a lot more of a "one size meets all" approach than back when dinosaurs walked the earth.  Back then, my friends had to travel 30-45 minutes to dialysis, which completely sucked, but their treatment was so much more individualized than what we've experienced with the chain.

All of that is a long way of saying why I'm so very grateful to have found this community of people living with dialysis!  I know a little knowledge can be a dangerous thing, but some of the info he's gotten is worse than "the perfect being the enemy of the good" -- it's like the clinical staff don't understand their contradictions, which would make living with dialysis darn near impossible.  End rant :-)

Oh -- the dialysis clinic flat-out told me that home HD was impossible solely because my brother lives alone, so I'm glad to learn otherwise.  Not necessarily for my brother for various reasons, but it might be helpful info for someone I cross paths with at some point.  So thanks!

LilSis

[Charlie B53]

Dr's, Nuses, Clinic's, pretty much the whole medical world, will only tell you what they want you to know.  Not near necessarily the whole truth, and definitely not what you ask.  Rather they will evade the straightly asked question when they don't want to admit that you are right.

This is maybe one of the major reasons Epoman started IHD, so we can learn the truth from each other.

Bless Epoman's soul for he has done a very great thing starting this.

Together we have helped very many people.

[iolaire]

Welcome to the group @lilsis2018, and thank you for learning what you can to help your brother.   As the patient I've always felt that the role of the loved one the most stressful. 

One piece of advice is that if you have the option to move dialysis centers is that its probably easier to do that sooner rather than later.  If the patient is on private insurance then he is probably a cash cow to the (any) center and any center would be happy to have him, and want to keep him.   

Looking at the future if they can not support PD training how well will they support the existing PD patients from year to year?

If you have options of treatment companies it might be worth it to interview another center, ask for another patient to talk to who received PD training recently to get a gauge of if it can be done better at another center.  Also it might be good to talk to a long time patient.

In my case at times I felt like it might be easier to receive treatments closer to work but my existing center didn't want to anything to help that process because that was another independently owned DaVita center and they liked receiving 5* the money from my insurance as compared to Medicare patient - for example even at my request they never managed to schedule me for an off time treatment at that center before I traveled and such.  (Also I should note when Fresenius opened a new center near me they poached the nurse and good employees from my DaVita center - from that point the nursing staff was no at good as it was before!)

If I was to do it again, I would not hesitate to drop a center (and the corresponding nephrologist) if I thought I would receive better care or more convenient care.  (And I don't really have any complaints about the center I spent 3.5 years at, maybe its just because I've received treatments at many centers around the world and know that centers are basically interchangeable globally, so as long as you can trust the nephrologist go to the center that works best for you.)

[cassandra]

Welcome to the site Lilsis2018


   


I can not stress enough how right previous posters are. Without this site I would have been dead years ago.


Take care, Cas

[kristina]

One anecdote I'll share to let y'all know how very much I appreciate the real-life info here:  when my family member was finally discharged back in December, the dialysis clinic staff told him he absolutely could not shower (or bathe) with the Permacath, which was just unacceptable to me -- while he was in a rehab facility, they used Tagaderm (which gets real expensive really quick) to tape him up so he could shower.  The dialysis clinic was Not Happy when I told them that & said absolutely nothing other than sponge baths & washing his hair in a sink (which wasn't possible from a balance point because his foot was in a flippin' cast).  From reading here, I knew that people with Permacaths do, in fact, safely shower with proper precautions, and I learned about much less expensive solutions besides Tagaderm (we went with cutting Ziploc freezer bags to size after finding things like Saran Wrap too difficult to keep from sticking to itself).  I had some work done with his tub to make getting in & out with a cast easier (glass tub doors removed & replaced with a curtain, grab bars installed in & out of the tub, shower chair, etc.) and with careful taping up of the Permacath & a shower cast protector for his foot when needed, he's been safely showering with no issues :-)


Thanks,
LilSis

Hello and welcome to IHD.
I have had a chest-cath for over three and a half years with no problems so far (touch wood and touch wood again...), but I would never ever have had a bath or a full shower ever, not even with all the protection available, because I have seen and heard catastrophies about patients, who did not accept the rules of: no full bath and no full shower with a cath in place... Please understand me, that I don't want to sound negative, but please be ever so very careful with it all and to be honest: is a bath or a full shower really that important to take such a risk? After all, dialysis gives us more time to live and without dialysis we would be dead anyway... wouldn't we; so why take risks that could turn out to be life-dangerous, if for one split second we are not overly careful and as a result we have invited disaster ? I always use my movable not-too-much-water-coming-out-of-it-shower-head up to my hips and clean the rest of my body very carefully with a clean flannel every time and I have been told by medics, that this method could bring good luck.
Please take great care and I send you my good-luck-wishes from Kristina.

[kickingandscreaming]

It is perfectly acceptable to shower with a PD cath.  Even at the very early stages.  No scrubbing around the cath, but letting the water flow over it is just fine.  Sorry, no baths though.  And limited swimming.

I've been doing PD for almost 3 years.  I am NOT a clean freak.  But I am careful not to touch any of the connector tips.  A couple of times my hand slipped and I touched something I shouldn't have.  But because I am paying sharp attention, I caught my error and aborted treatment.  Or started again with fresh supplies.

PD is pretty OK as far as dialysis goes.  If my peritoneum ever fails, I will chuck the whole business if HD is my only other option.  That's how much I hate HD.  I understand why some people choose/prefer HD, but that group certainly does not include me.  Good luck to you both.

[Charlie B53]

3 1/2 years with a PD Cath.  My clilnic didn't want me to get the end fitting assy wet.  They taught me to wrap it, sealing it fromo the water so I could shower freely.  Initially I had problems with my exit site, constantly having it cauterized.  Until we figured out it was my own sweat causing the problems.  Leaving the site UN-covered it healed perfectrly.  Never another problem.

What K&S says about keeping ALL fittings clean and not touching anything.  I failed, once.  The resulting infection wouldn't die.  My PD Cath had to come out.  I've been on Hemo 18 months already.

Both types of treatments work, and can work well once you adjust to that type and the dietary and fluid restrictions that come along with Hemo.  PD?  doesn't have near as much restrictions and is great for those that love to eat and drink.

Learn as much as you can.  Deciding which type of treatment fits YOU is most important and not a decision you should let anyone make for you.