It Came As A Surprize!

[Dualref]

 I joined the site here a few weeks ago. My nephrologist had said that I'd eventually be needing dialysis so I thought this was a good website to join. Lots of good info. In April I had a fistula installed, and those damned doctors nearly killed me doing it. Usually I recover quickly from surgical procedures, but not this time. Here we are 6 weeks after the fistula placement and I am sicker than a dog. In my introduction I explain what happened there. Personally, I think the fistula placement surgery put my kidneys over the edge.

Anyway, I wake up last Saturday morning, go to put on my pants and can't zip them up. When I took them off the night before they were kind of loose. Now I can't get into them. I weigh myself. I had gained 18 lbs of weight overnight! I put in a weekend call to my nephrologists office. I was told they don't answer calls on the weekend, go directly to the emergency room. I ran a quick inventory. I could still breathe just fine, BP was fine it just hurt to move around because it seemed all the weight I gained went into just my left arm and around my waist. Ankles were just fine and normal. Urine output seemed to be down by about 80%.

First thing Tues morning I called the nephrologists office. She sent me to a lab for new labs as my old ones were at least 30 days old. By the afternoon I was in the nephrologists office and while the labs hadn't come back.  The doctor told me, you are going on dialysis right now! But I needed something called a "tunnel cath" installed first because the one that was installed in April wasn't old enough to use yet. So she said she'd find someone that could install this tunnel cath, and I told her after my last experience with the fistula, let me find my own doctor to install it. I live north of the city and we are having a lots of floods here lately. So she said OK. I put in a call to a nephrologist near my house that could tell me where to get this procedure done at.
In the meantime we upped the diuretics way high and I started loosing all that excess fluid quite rapidly.

The next morning the nurse at my nephrologists office says she made me an appointment to have the tunnel cath installed. At a hospital in a flooded part of town 40 miles from my house! I asked her if she as nuts? "What is wrong with you people? There has to be something wrong with you to send a patient into a flood zone just like that!" They didin't seem to have any problems with it, but I did. I have hospitals within 5 miles of my house that can do this. So I called back the new nephrologist and told him what was going on. He said to have my latest labs sent to him and his office would take it from here.

 In the meantime the original nephrologists office is in a state of panic. What dialysis center are you going to use? You need that tunnel cath NOW! Do you have your insurance companies approval ready? I said with that much work to do, we need to take things step by step in a logical order. Why rush if you know the dialysis center can't see you for three more days? IMHO,  the time to panic was when they told me originally that they don't do after hours calls and to head to the emergency room. Who's going to pay the $500 ER Copayment? They sure are easy with other peoples money.

[PrimeTimer]

Sorry you are going thru such a terrible time. Hope you get to a hospital soon so you can have that catheter put in and some dialysis. Some insurance policies waive the co-payment or charge less if you are admitted and have to stay in a hospital for treatment. I would hope in your case that if you go to an ER that they will have a Nephrologist there to look at you and order all this be done ASAP. Hope you get the care you need, fluid building up is not good!

[Dualref]

 I've lost most of the fluid now, I feel a lot better. I have an 8:30am appt on Monday with a new nephrologist in my area. My creatine is 7.10 and my bun is at 95. I know those numbers are terrible. I'm not having any symptoms at this time and the new neph seems to think I'll make it through the weekend ok since I'm feeling better. My Gfr is 7.

 Anyone have any experience with a tunnel cath? Do they go in pretty easy? I've heard you have to be very careful with them.

[Michael Murphy]

Sorry you have gone through this but the most important non family member in you life is the nephrologist you use.  You need to have confidence in that person.  That said don't worry about your numbers that's what you have a nephrologist for. Every one is different numbers that would have one person miserable don't effect someone else.  Fluid retention, shortness of breath, fatigue, vomiting are all signs that it is time to start.  While I would not recommend dialysis as a life style choice it's better then the symptoms. If you have time visit the center you are going to use and see what's involved

[kickingandscreaming]

Anyone have any experience with a tunnel cath? Do they go in pretty easy? I've heard you have to be very careful with them.

I had one when I began hemo--suddenly.  Insertion was an out-patient procedure (although I was in patient at the time with pneumonia).  They put you out and you don't feel a thing.  I had mine for almost 4 months until I got my PD catheter straightened out.  During that time I was not allowed to shower or wash  my hair in the conventional ways and that was the hardest part for me.  You do have to be careful with them as an infection there leads straight to the heart.  So these catheters are seen as a temporary measure until a fistula is "mature" or a PD catheter is working. The best thing about it is that you can do hemo without the pain of needling.  I wish someone would come up with a bionic fistula that would allow those of us who are needle phobic to do hemo without the horse needles.

[Xplantdad]

My daughter (I am her caregiver) has had a tunneled cath for a year now. She didn't have any good veins to use as a fistula-and since she's already a heart transplant-the CVC should have been a last resort due to to infection possibilities. But-our daughter's PD cath was infected due to poor prep before surgery and also ended up getting plugged up while waiting for the site to heal (people with compromised immune systems heal slower). So, the PD cath was pulled AFTER she went septic and ended up in ICU. They put her tunneled cath in when she was fully awake.

Since we practice great aseptic technique-she's had no issues. Also, you can put a covering (clear bandage) that will allow one to shower, too! 

[Dualref]

Wow, the things the doctors don't tell you.

 My visit on Monday morning will be the first time I am seeing this new neph. I have the fluid retention, but no vomiting, nausea or anything else. But we are going prepared! Since I am single, I am taking my dogs to the boarding facility tomorrow. That way if the doctor decides I need to go to the hospital or anything else I'm prepared at home and my dogs will be taken care of.

 I found the dialysis center I want to use, I have to call them for a visit. By appt. only. There are a number of dialysis clinics near my house within a few miles.
Maybe I should visit several? In fact there is a DaVita center only 5 blocks from my house. It's brand new. But my old neph said she doesn't want me using them. She didn't say why.


Dualref

[kickingandscreaming]

If one of the centers is a DCI one, look into that.  DCI from everything I hear is quite good and is a not-for-profit center.  The further any of us can get from the conflict of interest that goes with for profitness, the better.

I too am single and a dog parent.  That's my biggest dread that I will be swept into the Medical vortex and my poor dog will be not taken care of.  Good of you to make arrangements before hand. 

[Simon Dog]

Maybe I should visit several? In fact there is a DaVita center only 5 blocks from my house. It's brand new. But my old neph said she doesn't want me using them. She didn't say why.

Your choice of center can also limit which nephrologists you use - it is doubtful (though possible) that your favorite neph would apply for privileges at an additional center just for one patient.

If you think that home dialysis (PD or HD) would be something you are interested in, you need to find a neph that will support this choice, as well as a clinic that offers a home program.   If you're content to ride the clinic chair, the quality of the staff servicing in-center patients at the clinic becomes more important.

[Dualref]

It seems around here the nephrolgists go with a clinic. In other words you get the nephrologist who is assigned to the dialysis center you will be using. I found out that this doctor I am seeing on Monday has his office in a dialysis center. And a hospital is around the corner, so they could probably put in the tunnel cath and get me started tomorrow. This center is about 6 miles from my house. It all depends on what he tells me I need to do.

 As I outlined in earlier messages here, I dumped my original nephrologist.  She got all wrapped up in Obamacare and freaked out and became a real hard ass. She no longer wanted  to do anything because "Obamacare doesn't allow it". And I don't even have Obamacare! But then she decided to treat all her patients like they had Obamacare even though they didn't. That way she doesn't get into trouble with the government. She needed to go!

[Simon Dog]

What kind of things was your former neph taking off the table due to Obamacare?

The only thing I know that was off the table due to $$ at my clinic when I was in-center was a 200 or larger filter; tegaderm dressings for the cath (but available with an MD order, which was easily obtained); and protocols better than 3x/week.   I have been switched from epo to Micera, but the RN told me I have the "right to epo" if I so choose.   A big name hematologist I consulted with told me Micera was a good idea regardless of the cost issue, so I am sticking with that.   

The only silly policy is that if I need a second Micera shot in a month, and they know the dose two week in advance, they can't just give me the syringe for my fridge (even though I was doing my own epo shots) because of "FMC policy", so I have to go in for those.   The RN is pretty much always on time so that is no big deal.

[Dualref]

 My neph was limiting my meds due to Obamacare. Here was a typical scenario.

Me: I need a refill on my Hydroxyzine.

Neph: Sorry, can't do that one anymore. It's not a kidney med and the gov't will throw me in jail if they catch me prescribing it. Go see your GP and get it there.

 It used to be that my neph handled all my prescriptions. She acted as sort of a clearing house. She said it's so she always knows what I am taking. But with Obamacare that all changed. Now I have to visit several doctors to get my meds refilled.

 This neph keeps telling my that the government will throw her in jail if she prescribes anything "out of my scope of practice", but I told her that "Hey look, before you were a Nephrologist you were a doctor. You should be able to prescribe anything you want without fear of government reprisal. She just says "That's not the way it works". In the meantime my other doctors have no problem refilling prescriptions that they write at anytime.

[PrimeTimer]

Might be that your doc is hesitant to prescribe the Hydroxyzine because in addition to being an anti-itch med, it can also be used for anxiety and have a sedative effect. Seems to be a "crackdown" coming from the FDA/Govt telling docs to cut back or stop prescribing these meds because a lot of people are selling/using and abusing them on the streets (becoming addicts) so now the rest of us law-abiding citizens get to (yup, you guessed it, suffer some more.) I liken it to what happened to over-the-counter antihistamines. Meth-heads found a way to use some ingredient in OTC antihistamines to make meth and so they started to regulate that. Hope I didn't get off topic by too much but wanted to offer a possible reason as to why your original neph blames obamacare aka regulations aka C.R.A.P.

[Simon Dog]

I liken it to what happened to over-the-counter antihistamines.

Interesting paper by O.Hai and I.B.Hackkenshit on how to make Sudafed from Meth when the pharmacies are closed: http://heterodoxy.cc/meowdocs/pseudo/pseudosynth.pdf

[kickingandscreaming]

My neph balks every time I need her to rewrite my Xanax script.  She ends up writing it, but always says "Why am I writing this? Why not ask your PCP?"  And I remind her that I only need it because I can't sleep because of "her damn disease."  I'm not on Obamacare. I'm on Medicare.

[PrimeTimer]

I liken it to what happened to over-the-counter antihistamines.

Interesting paper by O.Hai and I.B.Hackkenshit on how to make Sudafed from Meth when the pharmacies are closed: http://heterodoxy.cc/meowdocs/pseudo/pseudosynth.pdf

Funny (not  ) that one of the references for the paper was the Dept of Justice. Slimeballs.   

[Fabkiwi06]

I had surprise dialysis too! Such a great surprise... 

I was in the ICU when I got my tunneled cath, but from what I remember it was pretty easy to recover from. Little sore, but nothing too bad. I don't have any additional health issues and I'm still pretty young so I'm told that has worked in my favor. Getting it removed hurt like a son of a gun, though. They just used local anesthetic and pulled... not fun.

[kickingandscreaming]

Getting it removed hurt like a son of a gun, though. They just used local anesthetic and pulled... not fun.

I think that totally depends on how much lidocaine they use.  Mine didn't hurt at all--although it is something of a weird experience with the pulling and pressure, etc.  But not painful.

[Dualref]

Sorry to take so long to get back to you all. My computer monitor died!

 Good news. My new nephrologist said he would really NOT want to use a tunnel cath on me, and that while my bloodwork isn't that hot, I'm not very symptomatic of needing immediate dialysis. On Aug 9 my fistula should be ready to use. So we are going to try to make it until then. But I'll have to go into his office every 2 weeks until then for monitoring. His office is close by, so no biggie. He also told me that he starts his dialysis patients on dialysis in the hospital until they get used to things, maybe a week.