Appointments with the neph

[Chris]

I would never call this a contest...lol Contest are meant to be fun I thought.
 
However this is an observation I realized when I read your post last night. I thought at the time I had it rough, but hind sight say's otherwise in the long run.

[jbeany]

  I was diagnosed 20 years ago, but it has been the past seven years that I was told how bad my kidneys were, so for seven very long years, I've been struggling with this.  It's a peculiar kind of hell. 

Yup, been there.  That long slow slide, where the best news you can hope for is that you haven't, for the moment, gotten any worse. 
By much.  Mostly.  You hope. 
It's constant stress, and a constant fight to re-adapt your "normal" to something that is constantly changing for the worse.

[rsudock]

It seems from reading that the slow progression of being put on D is harder than being told in the ER that you have renal failure and yu can't go home and that you (well I) need to have dialysis soon. Two ends of the spectrum and I realize you are having a tougher time than I did.
 

You know, I really appreciate this sentiment, I really do.  It's not a contest; it's hard for anyone who has lost their renal function, whether it occurred quickly or slowly.  But I just wanted to respond to this because yes, it IS hard, and I appreciate it that someone recognizes that.  I was diagnosed 20 years ago, but it has been the past seven years that I was told how bad my kidneys were, so for seven very long years, I've been struggling with this.  It's a peculiar kind of hell. 

It is like walking a tight rope...you are using all your inner and outer strength (physical and emotional) to stay on the rope, but you know eventually you will fall off. It is like living in limbo...not sick enough for D, but not well enough to put it out of your head completely. living hell...agreed!

xo,
R

[MooseMom]

Yes,I knew you all would get it. Usually one goes to the doc to get better, butnot in this case.  You go just to see if you are getting worse. You never really get significantly better.  I think my husband is finally coming to terms with that.  He no longer says "Everything will be ok" before my appointments. That always really annoyed me because it was rarely true.

[rsudock]

 


Holding your hand in cyberspace moosemama!

xo,
R

[malaka]

Had another "second opinion" visit last week.  The only new questions were whether I'd ever traveled extensively in tropical areas.  Well, I did spend a week at Fort Myers Beach last March, but that didn't count. 
She seemed slightly disappointed as she's looking for a cause of my idiopathic disease.  I'm starting to call her Dr. Sherlock Holmes.  As part of that quest, and to see if I'm treatable or not, she's schedulaed a renal biopsy for next Tuesday.  Had one when I was dx'd with membraneous nephritis a couple of years ago.  No big deal, really, except for the permanent marker tats I got on my side which my kids thought were really cool tribal tats.  Couldn't really scrub them off due to biopsy puncture, so they were there about a month.

Doctors don't like "puzzle" patients where is answer is still "medical science doesn't know".

[malaka]

The biopsy was an all day affair.  Four hour wait, post fully-conscious biopsy, to make sure I wasn't bleeding to death.  And only the smallest mark from a marker  so I didn't look "tribal" this time.  Much different to have biopsy with only local anesthesia. Felt fine afterwards until  I learned I had to stay 4 more hours to get clearance from lab on urine and blood tests. 

BTW, I enrolled in a genetic study where samples are being analyzed, my DNA is being analyzed, with the hopes of learning the cause of CKD generally.  Still eligible as I'm not on dialysis yet, don't have polycysitic disease, and I'm not in jail (no kidding--you're ineligible if you're in jail).  Maybe it will do somebody else some good some day.  All I have to do is donate a urine and blood sample (35cc's) every six months.  That's nothing--my nephro takes blood every 2 weeks or month, depending on when I see him.

The best part?  I got to see the samples in preservative -- looked sort of like a mini tequila bottle with several mini worms in it.

[MooseMom]

Malaka, re the genetic study, that is just so cool.  Would you mind terribly posting some details about who is doing this study because it strikes me that maybe I could be a candidate if that would be useful to someone.  I'm pre-D, have no polycystic disease and am not in jail (although I could be faking you all out and be writing this from my cell... ), and if my DNA could help someone find a cure/cause for CKD, I'd be thrilled.

Let us know what the biopsy shows; I'm really curious.

[malaka]

The study description is somewhat vague. Its out of University of Michigan.  And they will b analyzing samples
for genetic markers that point to various CKD's.  I don't know why they aren't involved with polycysitc kidney disease, but apparently they are happy to take on all other diseases.  Actually, most of the descriptlon was about how they keep patient identities secret, Big deal. I'll bring the literature in next week and post a few quotes from it.

Biopsy results won't be available for at least 5 days.  I suspect the results will go to my nephrology consultant who may or may or portent further treatment for me.  My treating nephro has been talking a chemotherapy agent or some newer drug (forget the name) that costs $1000 per mot. Lke anybody can afford that from pocket change.  If they want to give it to me as part of a study, I'll take it.

[MooseMom]

I am assuming that they are not including polycystic diseases because they've already discovered the genetic markers for those.  But we have to remember that "genetic" doesn't necessarily mean "hereditary".  For instance, I have fsgs, and while there is probably a genetic marker for that, it doesn't mean that it is an inherited condition.  I don't know anyone in my family who has had it.

[Chris]

I am involved in a DNA study too, but they only took blood samples and a urine sample ad do not need to return. If I still have the brochure MooseMom, I an post the information or I will pick up another brochure whe I go back to Northwestern on the 27th.
I have een involved in a couple research studies, they are free and sometimes great to see results.  There is a website that list all the research projects associated with a certain hospital that I have saved on my old pc and possibly have an email from the group.
 
As far as biopsies, I have to be out. The first one I had that was on my liver was very unnerving and very uncomfortable. All others that were on my kidney were under anesthesia while I was in the hospital. What I have learned over the years is if you are going for a procedure or a big test, expect delays and to stay there most of the day.

[malaka]

My "second opinion" nephro called yesterday all excited that I was in the study because my case is "puzzling".  Biopsy showed scarring rather than inflammation (so not amenable to treatment) but I have (are you ready for this?) eosinophils which MAY indicate inflammation due to drug reaction.  The disease, pending electron microscopy, resembles interstitial nephritis under a normal microscope.  She wants to blame a heart drug called flecainade but lacks evidence to do so, and I started with kidney decline long before I started taking that drug.   

Anyway, guess who needed another blood test today? 

I took notes, but couldn't read my own writing.  Chevy-Strang disease? I hope Google can correct that one! 

Maybe I'll become famous after all!  Not the way I wanted to, of course, but famous in medical circles.  Sort of like Lou Gehrig's Disease.  HaHaHaHa

[MooseMom]

Well, you're famous here on IHD, and we're the only ones who really count.

[malaka]

Churg Strauss Disease.  Not a good prognosis, but I have not been formally diagnosed with that, so why worry?

Interstitial nephritis hasn't been ruled out, either. 

Waiting for the electron microscope pathology results.  Ain't gonna stop me from getting the fistula on Friday in any event.  Isn't "Be Prepared" the Boy Scout motto?

[Deanne]

I haven't looked at this thread for a long time. Malaka, did you get a diagnosis? MM, I'm glad to see your husband is coming to terms with your disease. While I know he cares about you, he can't offer you full support for something he hasn't accepted himself.

I saw my neph earlier this week. It was mostly a good appointment, but she freaked me out a bit, too. My labs came back great. I've been on Sensipar for a few months now and she said my PTH is just where she wants it. Potassium, phosphorus are within normal limits without dietary restrictions on them. No binders yet. My creatinine level has barely budged since January. My eGFR came in at 16% (I thought it was higher! That was one of my freak-out moments).

My other freak-out moment was that she asked if I'm still working full-time and offered to put me on disability. I rejected the idea, but it threw me for a loop that I'd even be eligible for disability.

[MooseMom]

Deanne, there's always something that will freak you out in one of these appointments.  And it's usually something you don't expect.

Funnily, I'm not on sensipar yet but I am on binders.  When the neph wanted me to start binders, I felt really upset because it was one more step closer to complete renal failure.  But once I actually started taking them (and they aren't as big as I had imagined, so that was good), I was grateful that there was some way to rid my body of extra phosphorus while at the same time protecting myself from having too much serum calcium, so I'm OK with it. 

Deanne, how high did your PTH go before you started taking the sensipar?  Mine was rising, and my calcium was a little high along with my phos, so that's why I started the binders.  My PTH is down (but still above normal) and so is my calcium.  Would you believe that the lab forgot to check for phos?  So, I don't know if the binders are lowering my phos (I've been on them only about 6 weeks), but I guess it must be working since my PTH and calcium are down.

It's all such a delicate balancing act, isn't it.  I'm really glad your numbers were so "good" (relatively speaking!), but I am surprised that your neph spoke about disability.  I can see where that would throw you for a loop.  But then again, she's giving you that option.  A lot of people with an egfr (like you and me both) are much sicker than we are.

[Deanne]

Sensipar kind of scared me when I started it. It was probably similar to your feelings about starting binders. I was very worried about side effects from it, too. They sounded awful. It's fine though. I don't have any side effects from it. It's very expensive! My co-pay on it is about $250 for a 3-month supply and my insurance company balks at my being on it because I'm not on dialysis yet. I think the full price is well over $2000 for a 3-month supply. My PTH was in the 300's before I started it and it's 117 now (I think - I'm going off memory. I don't have my lab report with me). I tried Calcitrol before starting Sensipar, but my PTH was still too high on it.

I always feel like my neph has my best interests in mind, so even though I don't like to think of my self as disabled/being eligible for disability, I love her for asking me about it because she's trying to make sure I have as a good a quality of life as possible.

I see stories here about people who have bad nephs and I feel so lucky! Mine is very proactive about trying to make sure my lab values are good and I never feel like she has any ego issues - when she wasn't sure about which way to go next, she asked for another neph's opinion and, another time, she pulled up medical journals and looked at them with me to decide which combination of meds might work best to try to bring my cholesteral level down a bit more. It feels a lot more like a partnership than her just telling me what to do.

[MooseMom]

My mom spent the last five years of her life on dialysis; her renal function was destroyed as a result of surgery to repair her aorta.  THAT surgery was successful, but she sure paid a price.  Anyway, she had to take binders, and my God, she complained about them.  She tried every binder available, and she had stomach trouble with all of them.  And she would complain about how enormous they were.  So when my neph told me I should start taking them, I was upset for all sorts of reasons.

They are actually no bigger than some other pills I take, but yes, they do give me the runs more often than not, but that doesn't worry me because I just picture all of the phosphorus coming out of me.   

Having a neph you can trust to do their best for you is just the biggest gift of all.  It sounds like yours respects your intelligence and trusts YOU just as much as you trust her.

[Jean]

Well, folks, I am finally to the point that I may switch Nephs. I have been going to him for 3 & 1/2 years now and he still will not talk to me about dialysis. When I ask he gets very angry and says, it is too early for you to have tubes and things sticking out of you. Now, no matter what I ask him the answer is always, " Stay hydrated".Cramps? Stay hydrated. Nausea? Stay hydrated. I told him that I was taking more Vicodin than usual, he never let me tell him why, just said, you need to take a stool softener every night and extra iron. I would rather slit my wrists than take a stool softener every night. The results are disastrous. On the other hand, I am afraid that if I switch Nephs, it could be worse. What to do, what to do.

[pinky_22]

Jean,
Wow, kudos to you for putting up with that for 3+ years. You are perfectly entitled to change your neph if you aren't happy with him. After all, it is your health and well-being on the line, not his. Finding a good doctor can be hard and frustrating. Are there any other patients in your area that you can talk to to get an opinion? Or maybe discuss it with your PCP, as other docs tend to know who is reputable and who isn't. I wish you luck.

[MooseMom]

Well, folks, I am finally to the point that I may switch Nephs. I have been going to him for 3 & 1/2 years now and he still will not talk to me about dialysis. When I ask he gets very angry and says, it is too early for you to have tubes and things sticking out of you. Now, no matter what I ask him the answer is always, " Stay hydrated".Cramps? Stay hydrated. Nausea? Stay hydrated. I told him that I was taking more Vicodin than usual, he never let me tell him why, just said, you need to take a stool softener every night and extra iron. I would rather slit my wrists than take a stool softener every night. The results are disastrous. On the other hand, I am afraid that if I switch Nephs, it could be worse. What to do, what to do.

If I remember correctly, your egfr is above 20, is that right?  If so, I can see why he doesn't think you NEED dialysis, but I can't understand why he refuses to talk to you about it.  You have hired him for his services, and part of the service is for him to address any concerns or questions you have, and if those include queries about dialysis, then he should answer.  What is it exactly about dialysis you want to say to him?  What do you want to hear from him?

I'm sorry, but I don't know why you are taking Vicodin; you probably posted the reason somewhere, but I don't know.  What happens if you take a stool softener every night?