PD catheter surgery...

[IOnlyGet5]

I am almost 57 yrs old (next week) & have been in ESRD since May 2017 (diagnosed ckd stage 3 2 years ago). I've been pushing my nephrologist about starting PD since I found out from vascular surgeon that my veins are much too small (even axial ones) for hemodialysis. 

Now that I'm ready to start PD I find out the hospital wants over $2500 deposit for surgery to put in catheter...I have private insurance through my ex but it only pays 70 or 80% of medical & I have been out of work for over a year & no savings left so I'm worried this will be my last birthday...

[LoneHighway]

Have you applied for Social Security Disability? You get Medicare with that. If your income and assets are low you can also get "extra help" which pays almost all of the costs for drugs through a Part D plan you don't have to pay for.

Do you actually need to begin dialysis or are you guessing based on labs? Labs are not the last best indicator.

The only time I've ever had a hospital request payment up front was when I had not already met my out of pocket limits for that year.

Also I'm pretty sure you qualify for Medicare immediately when starting home dialysis, but I'm not sure if that also applies to PD.

[Simon Dog]

While many on SSDI get Medicare, and vice-versa, they are qualified for separately.

[IOnlyGet5]

Dialysis Center has repeatedly told me NOT to apply for social security or medicare until after I've started dialysis or it will screw me over bigtime. 

I've made arrangements to pay hospital $400 on day of surgery & sign my life away to repay the rest in 12 months.  They told me surgery will cost $14,000 just for hospital...not surgeon or anesthesiologist. Insurance only covers 70% of that so I hope I don't have to pay much out of pocket for dialysis supplies & training!

The decision to start PD is not just based on labwork ... nephrologist wanted me to start in Aug but we couldn't get me scheduled with surgeon visit until mid-September & then soonest we could schedule surgery was mid-Oct.

I was supposed to have placement surgery on 10/18 but came down with a severe respiratory infection weekend before. Nephrologist put me on a strong antibiotic that keeps working for days after you stop taking it in hopen i cold still have surgery... but when anesthesiologist called night before surgery she didn't like my terrible cough & called surgery off not willing to intubate an asthmatic in such a state.

I just got it rescheduled for Nov 7 & surgeon says he won't confirm it until he gets it in writing from a doctor that I am cleared for surgery after my respiratory infection.

I never saw nephrologist for the cough - she just called in a prescription after talking to PD nurse when i told nurse i thought surgeon might postpone cuz i was so sick ... so nephrologist says go to primary care dr for clearance. 

So I drove over 100 miles round trip yesterday to see my primary care doc (haven't found one where I now live) & he says I've also developed a bad sinus infection.  He gives me a super strong antibiotic shot & a steroid shot & when I asked for the letter nurse says he can't clear me...call back on Nov 6 first thing in case he needs me to come back in.  Steroids pushed my blood sugar over 600 yesterday evening (thanks guys I really didn't need that to deal with too) & so far I don't feel any better from Tuesday's shots.

So Monday I may have to drive 100+ miles to get cleared for surgery, then about 17-20 miles in opposite direction to board dog, then another 35 miles the OTHER way to surgeon's for pre-op labs at 4p, then go home & try not to worry & to get a little sleep before showing up for surgery next morning.
<biting nails in frustration>

I'm worried I won't be able to lift anything or bend forward after surgery (most of my things are still in boxes after move so bending is a constant state of being for me).  I'm worried the cost of seeing PCP on Monday will deduct from the money I promised to pay hospital as deposit & they might not admit me. I'm concerned about pain b/c all my docs took me off hydrocodone or any other pain pills except plain old Tylenol years ago when I was diagnosed with ckd & I'm not sure Tylenol will control my post-op pain adequately since it doesn't help my headaches or shoulder & back pain now. If i'm in pain i will find it hard to sleep (I dont get much sleep now) & heal. I'm concerned surgery position will strain my already damaged shoulder (I was knocked to hardwood floor hard by a 75 lb pit bull Aug 2016 & I'm still in terrible pain / limited movement.

My roommate counts on my help at night (she had a stroke) & I'm her caregiver from 8p to 8a ... her home health agency is looking for someone to come the night of my surgery & the following night but if I'm not back to 100% quickly it's going to be difficult for us both. 

I've read reports that some people found it hard to get out of bed post catheter placement surgery & that has me a little concerned cuz I already have trouble with physically being able to get out of bed because I can't use my shoulder, wrists or hands to assist.

I keep telling myself it's going to work out fine & not to worry so much...but that's what I thought when I had bilateral carpal tunnel surgery & my life has been drastically altered (not in a good way) since that day with pain & limited use of my fingers, hands & wrists since I woke up from surgery on Nov 6, 2006.

Dana "too worried to sleep" Beth

[kickingandscreaming]

I'm sorry. You sound like you're between a rock and a hard place.  I can't comment on much, but I can say that after my PD catheter surgery (I had it twice) I had no trouble getting out of  bed or doing pretty much anything.  They gave me oxycodone, and I  took it once and proceeded to collapse and narrowly missed hitting my head on a piece of furniture on the way down.  Needless to say that's the last one I took.  Tylenol was good enough.  The incisions were no big deal.  The major discomfort came from the bloating from the gas from the laporoscopy.

good luck with all your challenges.

[Cupcake]

I had my PD catheter placed almost exactly a year ago. I don't remember taking any pain meds other than maybe the first day. I was told to limit lifting to no more than 10 pounds for 6 weeks, but I was shoving furniture and other stuff around fairly quickly. My concerns about your situation are twofold- most importantly, when you're hooked up, you are limited in how mobile you are- the hose is only 20 ft. You need to make YOU the priority, your roommate may need other arrangements/help if she needs help in the night. Secondly, there is some manual dexterity/strength involved in hooking up the solution bags. I was helped when my clinic finally gave me a little plastic gizmo that helps break the cones and turn the connectors to the hoses. Many people on this site know more about $$ than I do, but I know there are funds available for ESRD patients- ask your social worker. I suspect the clinic gets paid more for private insurance than Medicare, so they may have a conflict there. good luck- you will feel better once you start dialysis.

[PrimeTimer]

I apologize if I missed this but do people who get PD catheters also get fistulas for just in case? Is it recommended? My MIL wants to do PD and my husband (and her Neph) have repeatedly told her to get a fistula installed so it will have time to mature for "just in case". She refuses. She says if she has to get a fistula she won't and will just die a slow peaceful death. My husband reminded her that going without dialysis is not a peaceful death.

[kickingandscreaming]

I do PD and do not have a fistula nor do I intend to get one.  Yes, they DO recommend having a fistula even if you do PD so it can mature in time for PD to fail (for whatever reason).  You are correct that dying of "no-dialysis" is not a peaceful death.  But "living" with HD is not my idea of a life.  So, at this point, I choose not to prepare for the inevitable failure.  Of  course, the best laid plans  don't always hold up.

[Simon Dog]

You are correct that dying of "no-dialysis" is not a peaceful death

I think this depends on your starting point.

A long term dialysis patient with no residual function will be a relatively quick kill.   Someone with failing kidnets with some residual could take years of declining health and worsening symptoms to die.

[kickingandscreaming]

failing kidnets with some residual could take years of declining health and worsening symptoms to die.

How about with already failed kidneys and (some but) not a lot of residual function?

[Simon Dog]

How about with already failed kidneys and (some but) not a lot of residual function?

The more residual, the slower the death, all other things being equal.   

[IOnlyGet5]

Thanks for the help, folks!  I am trying to convince my roommate that she'll need a night caregiver once I start dialysis. And I have expressed concern to my medical team about my hand & wrist limitations & getting myself hooked up.  I will ask about the device mentioned to help with that- if you find out the name of it please let me know.

No one I've spoken with or read of has ever said anything about a fistula as a "just in case" backup to PD but I can see the advantage. I personally can't do hemodialysis due to tiny veins so if PD fails I guess I just do hospice instead.

I was hoping to live at least 3 more years to see 60 but since I'm diabetic, asthmatic, have pulmonary hypertension & congestive heart failure in addition to ESRD I guess that may not be realistic.

[kickingandscreaming]

I think PD  requires a minimal amount of manual dexterity.  I'm 76 and I have no issues with the connectors.  Carrying heavy bags (6 L) can sometimes be exhausting, but I can do it.  I also use a patient line extender which gives you more than 20' roaming ability.  I can get to my front door to let my dog out although it is sometimes a challenge not to trip over tubing.

[Simon Dog]

Loved the 20ft leash when I was on PD.

[IOnlyGet5]

Where can you get the 20' patient line extender? I assume it's something I need to purchase myself & not standard issue.

[kickingandscreaming]

It's not a standard issue, but is readily available to order from Baxter every month.

[IOnlyGet5]

Thank you!  I feel like this whole dialysis thing is an exclusive secret club that I'm joining...I can't get info from unit nurse on much of anything until I actually *start* dialysis so it's kind of frustrating. You guys have been a huge help!

[kickingandscreaming]

Keep asking questions.  BTW, I can think of a lot of clubs I'd rather be a member of--than the dialysis club.