CKD: A life in waiting for all the way down!

[Athena]

This is a satirical rant.

It's that time again. Meeting with my Nephrologist to discuss my latest "mortality" results, ie seeing what my serum creatinine & BUN levels are at, along with everything else that can go possibly wrong. This time however I just failed to get my labs done! And tomorrow I will face him with no results & have to explain myself. The reason being - I just couldn't bring myself to do it. Last month, I had a meeting with a new nephrologist and this guy has passed on the results to my regular Neph (well that's going to be my excuse, anyway).

I've just been reflecting and to me it is obvious that waiting for end-stage kidney failure with zero medical research efforts to find a CURE FOR CKD, is just a clever way to drive someone to insanity.

My torturer is a highly professional, polite, articulate, well presented man who's an intellectual giant in his field. I could have got a far more unpleasant and offensive torturer! So for that I am grateful.

The trick is to somehow convince him that I actually have looked so forward to seeing him and am just overjoyed - I will receive a more pleasant reception if I just look like a happy CKD patient. Which will be easier to accomplish because there won't be any bad results on the table to look at.

I think he will be annoyed that I went to see someone else. I don't think specialists love that kind of thing.

Well wish me luck tomorrow folks.

[MooseMom]

I spent 8 years feeling exactly the way you are feeling now.

CKD is an umbrella term to describe renal insufficiency caused by a variety of things.  CKD IS curable in some cases, or it is at least arrested if diabetes and hypertension is well controlled.  But other diseases like FSGS are hard to cure if its cause is still unknown.  But yes, it is frustrating.

If your neph is truly the professional, polite and articulate man you say he is, he has seen many patients like yourself who perhaps have seen another neph and who feel desperation, despair and anxiety.  I can assure you that you are not unique.  I'm confident that he has pretty much seen it all.  So please do not put yet another burden upon yourself by pretending to feel what you do not feel in reality.  My neph sounds like he is much like yours.  Whenever I went to see him to get my labs, I would just do what I could to get out as quickly as possible.  On the one occasion that he caught me with tears in my eyes, he hugged me and confessed that FSGS is a horrible disease.  That he recognized this actually helped me feel better.  Your neph might possibly be an unexpected source of solace.

Do you get your labs before you see your neph?  For the first several years pre-D, I would not get my results until the neph actually gave them to me.  The one day when I arrived for my results, upon check-in, I requested my results, and the receptionist told me that I couldn't see them before the neph did.  I politely replied that I'd like to see them so that I could have time to digest them and to decide what questions I'd like to ask and that surely this would save the neph some time!  She relented, so from then on, I was more prepared for any shocks.

Now that I have a tx, I have labs done every month.  I have a standing order, and it states that results are to be sent to me or that I can request them verbally.  (I now get them via the lab's secured website.)  I am wondering if when you see your neph tomorrow, you could request that from now on the lab give you your results before you see him next.  If he agreed, could that help you a bit psychologically?  I would get so anxious during that week between the blood draw and getting the results from my neph that he eventually prescribed an anti-anxiety med.  Getting my labs as soon as they were available would have helped me enormously.

Anyway, I DO know how you feel, and it is horrible.  Just thinking and remembering those days and those feelings makes my stomach hurt as I type this.  Good luck tomorrow, and please do not "pretend" and hide your feelings unless this tactic is a good coping mechanism for you. 

 

[kickingandscreaming]

I will be thinking of you, Athena, when I too face my neph for my monthly check in tomorrow.  And this time I have some bad blood work to contend with and lots of symptoms I'm not at all happy with.  So it should be lots of fun. I am assuming they will have to tweak my program in a not so good way.  Good luck.

[Simon Dog]

I think he will be annoyed that I went to see someone else. I don't think specialists love that kind of thing.

Any MD who gets annoyed at a patient getting a 2nd opinion isn't worth trusting.

I got a second opinion pre-dialysis, since my wife was concerned I was seeing a community hospital MD, so I go see the "big name" in Boston.  The verdict?    Mr "Big Name" tells me "we would be giving you the exact same treatment here, save yourself the trouble of driving all the way into Boston, but feel free to see us if you ever need another opinion again.  By the way, we know your MD and he used to run the unit here at the big famous hospital."

[Athena]

I will be thinking of you, Athena, when I too face my neph for my monthly check in tomorrow.  And this time I have some bad blood work to contend with and lots of symptoms I'm not at all happy with.  So it should be lots of fun. I am assuming they will have to tweak my program in a not so good way.  Good luck.

Good luck K&S, I'll be thinking of you and hoping they do a brilliant job this time of tweaking things and making you feel much better. Please let us know how you go.

[Athena]

I think he will be annoyed that I went to see someone else. I don't think specialists love that kind of thing.

Any MD who gets annoyed at a patient getting a 2nd opinion isn't worth trusting.

I got a second opinion pre-dialysis, since my wife was concerned I was seeing a community hospital MD, so I go see the "big name" in Boston.  The verdict?    Mr "Big Name" tells me "we would be giving you the exact same treatment here, save yourself the trouble of driving all the way into Boston, but feel free to see us if you ever need another opinion again.  By the way, we know your MD and he used to run the unit here at the big famous hospital."

Simon, I think that's really the way it really is, as I'm discovering the hard way through experience! When we come to think of it, there's isn't much intervention and treatments when it comes to CKD management and medical protocol is what it is everywhere regardless of whether you see a big time guy or a humble community Neph. The cupboard is really quite barren and bare either way.

[kickingandscreaming]

Good luck K&S, I'll be thinking of you and hoping they do a brilliant job this time of tweaking things and making you feel much better. Please let us know how you go.

Well, there was good news and bad news.  My neph lenghthened my program and added more volume and an additional overnight exchange and added an extra night of higher concentration fluid.  Turns out I am under dialyzed and am what she called "hiding fluids." In other words I'm taking on fluids but it's not showing in the usual ways in legs, feet and ankles, but is probably being carried around my heart and lungs.  I've put on a lot of weight since beginning the cycler (a month ago) and my  BP is rising so hopefully this tweak will remove more fluid and get me closer to my dry weight.  Otherwise I might fail at PD and that would be very bad.  The good news is that, in spite of swimming in dextrose, my HgA1c was down to 6.1.  God knows how.

[hatedialysis2]

Good luck K&S, I'll be thinking of you and hoping they do a brilliant job this time of tweaking things and making you feel much better. Please let us know how you go.

Well, there was good news and bad news.  My neph lenghthened my program and added more volume and an additional overnight exchange and added an extra night of higher concentration fluid.  Turns out I am under dialyzed and am what she called "hiding fluids." In other words I'm taking on fluids but it's not showing in the usual ways in legs, feet and ankles, but is probably being carried around my heart and lungs.  I've put on a lot of weight since beginning the cycler (a month ago) and my  BP is rising so hopefully this tweak will remove more fluid and get me closer to my dry weight.  Otherwise I might fail at PD and that would be very bad.  The good news is that, in spite of swimming in dextrose, my HgA1c was down to 6.1.  God knows how.

have you checked into chromium supplementation (a trace mineral) for lowering HGA1C

[kickingandscreaming]

have you checked into chromium supplementation (a trace mineral) for lowering HGA1C

I have tried the full route of supplements [several versions of chromium and vanadium and herbs (berberine)] for blood sugar and none of them made any noticeable difference.  I'm really not concerned about my diabetes at this point.  I saw an endocrinologist last week and he said as a 74 year old women he would not even consider a 6.1 as diabetes.  He said if you took a sample of women my age a huge % of them would have a similar reading and would never be considered to be diabetic.  I eat a low carb diet and that has taken my A1c all the way from 9.0 to 6.1.  So I will just continue not taxing my pancreas with carby foods and be happy it's a good as it is.  I have Type 2 on both sides of my family so I'm managing it pretty well.  Kidneys, not so much.