I guess it's my turn

[jagermiester]

Hello everyone, my name is Joy and have done nothing but read this site for the past 2 days. My story started about 2 1/2 years ago.  In November 2008 I was diagnosed with Breast Cancer.  I went in for a routine mammogram and there it was.  However, it was in the very early stages and I had a mastectomy without having to do chemo.  I was seeing the oncologist every thing months and had just gone to see the oncologist the next September of 2009.  He said I was doing great.  Then, on Halloween I found myself in the hospital in Kidney failure and getting a couple of pints of blood.  My GFR was 8.  A day or two later, still in the hospital, the doctor said he had gone back and was looking at past labs and that they were showing signs of kidney failure. I was really surprised because I had just saw the oncologist a month before and he told me my labs were fine.

After I got out of the hospital, I went and got a copy of my lab work from the Oncologist and low and behold, my GFR was 50.  You know how on the lab reports where there is one side that lists the numbers of things that are within normal range and the other side that are not within normal range.  There was more in the NOT normal range than there were in the normal and the oncologist said my labs were normal?  I called him to ask what was up and he said that he generally only looks for the labs he does for cancer and doesn't look at anything else, it isn't his specialty. I understand it wasn't his specialty, but he could have seen something was wrong and referred me to a doctor that could help.  Instead, he didn't say anything and I ended up in the hospital.

All they did for me during that hospital stay was give me 2 pints of blood and a whole bunch if IV's to flush out my kidneys.  They said that they failed because of some high blood pressure medication so they took me off of everything I was taking. They sent me home and 3 weeks later, I was back in the ER and again, all they did was give me 2 more pints of blood and IV's but did send a referral for the nephrologist to visit me in the hospital this time. They did a kidney biopsy and diagnosed me as having AIN (Acute Interstitial Nephritis).  But other than the blood and IV's, nothing else was done.  After I got out of the hospital, I saw the nephrologist in his office in January and again, labs are low and the doctor said he wanted to try a "Hail Mary" pass and for two days I was give a pint of blood plus a bag of steroids and the third day another bag of just steriods by IV.  After that, I took 65mg of steroids a day for 3 months and then they had me taper it off. My kidney's started functioning and I did not have to do dialysis.  MY GFR slowly started climbing over the next year and finally reached 49 last February.  However, it has now started declining and is now down to 40 on my last lab.  It just seems to slowly be declining a few points every time I have labs done and I have an appointment with the doctor on the 10th to discuss my options, whatever that may be. 

So, that is my story.   

[MooseMom]

I am truly, truly astonished that your oncologist didn't bother to mention your "out of range" numbers despite them being outside of his specialty.  Now incredibly negligent.  This really is the most incredible thing I've heard in a while.

They don't really start seriously thinking about dialysis until your egfr goes below 20.  At that point, your neph may want you to start preparing for dialysis by creating a fistula if you think hemodialysis will be best for you, but as for exactly when to start, some people feel dreadful at 16 while others are OK at 10, so you have a ways to go.  You can function well on an egfr of 40, but the main risk there will be hypertension and high cholesterol levels which can certainly be treated with meds.

I guess all you can do right now is wait until the 10th and see what the neph has to say.  I'm sure it is a very anxious time for you, especially after a battle with breast cancer (and I'm really glad you seem to have won that particular battle).  While you wait, if you have any specific questions about CKD or dialysis, please don't hesitate to ask!  I'm very glad you found this site because the people here are very well informed and are truly compassionate.

[Rerun]

Joy, it is scary that they only do their job.  What are they union now?  I would be so mad.  But on the bright side 40 persent function is pretty good.  Pepole don't usually have to start dialysis until 10 percent depending on how you feel.  So, you have some time. 

You have found a great site to learn about dialysis and transplants.

Rerun, Moderator   

[Bajanne]

Welcome to our community, Joy!  You have found just the place for information, support and encouragement.  I am glad that you have been taking the time to read.  We believe that 'Knowledge is Power'.  So keep reading and keep posting.  Enjoy your new family here
Looking forward to hearing more from you,



Bajanne, Moderator

[RichardMEL]

G'day Joy and welcome to IHD!

Like the others I am surprised that a specialist like that didn't pick up the obvious signs, specially when the lab reports flag them. It's amazing how some people can be so focused on things that "matter to them" in terms of markers they are looking for for their area, like cancer related labs (like blood counts or whatever I presume). To miss stuff like that, or at the very least flag it to you to get checked out further borders on neglient to me, but of course that's all in the past so what are you going to do?

I'm also astonished that the heavy steroid load (sounds like you had methylpred, or a big blast of high dose steroids via IV, which I have had for a few days) and that seemed to kick start your kidney function. Would be interested in what the actual diagnosis is or was there, because I've never heard of that kind of treatment before - sounds like you might have some interesting things going on.

Anyway a GFR of 40 is still pretty good. I think when I was first diagnosed I had a GFR of around 40 or 45 and didn't wind up starting dialysis for 13 years - of course everyone is different and the specific conditions can have a real influence on the rate of decline and stuff, but I wouldn't start panicing just yet. Still, I hope your appointment next week goes well!

Anyway welcome to IHD!

RichardMEL, Moderator

PS: love the nickname

[willowtreewren]

Hi, Joy.

I'm so sorry that you have had to find us.    But I'm glad you did.

Your story is just unimaginable. It seems incredible that ANY doctor would just fail to look at the whole set of labs no matter what his specialty! Grrrrr. 

It does look like you will have time to prepare, but even so, if/when dialysis comes, it is still a shock. We knew it was in our future for about 15 years, and STILL had a hard time accepting it!

This is much to learn here, so take your time reading through the posts.

Aleta

[Ang]

 

[Poppylicious]

  Joy.

Gosh, I'm so sorry that the specialist was so focused on what he wanted to know that he didn't notice anything amiss elsewhere.  Still, glad you've found us!

[Brightsky69]

Your story does not surprise me at all. Did you see a military doctor??

When I was just a little girl I suffered from chronic ear infections. My father was in the military and so each time I went to the doctor it was a military doc. I can remember at every appointment the triage nurse always mentioned that my BP was high. Here sat a skinny little 8 year old girl with high blood pressure and nothing was ever done about it. They always blew it off as “Oh, you’re just nervous at seeing the doctor” or “Oh, you much have had a lot of sugar with your breakfast.” There was always an excuse as to NOT check out my high blood pressure. By the time I was 16 my school nurse saw that I was spilling protein into my urine….I had a school physical because I was trying out for the field hockey team. The nurse said I needed to get check out by a doctor before I could play on the team. So back to the military doctor I go….Did he check to see why I was spilling protein into my urine??? Oh He!! No. He just signed the paper saying I was fine to play on the field hockey team. By the time I was 20/21 years old I had less than 10% kidney function.
Two kidney transplants later I am still here despite the military’s total disregard for my health.  I feel sorry for soldiers who have nowhere else to go for health care.   

Hang in there Joy!! It’s terrible thing when the very people you’re supposed to trust when you have a health problem fail you to the point where your life is put into danger.

[jagermiester]

No, it was not a military doctor but a civilian.  I do know about military doctor's though and have had my share of run ins with them.  I was in the military for 3 years and then got out and married an Air Force guy and was a dependent for 13.  My youngest daughter at age 4 started having UTI's constantly, over and over.  They put her on a daily routine of antibiotics and she would still break through.  We were finally referred to Walter Reed and the Nephrologist there said that she would out grow the infections when she hit puberty, which she did.  But until then, it was a roller coaster ride dealing with the military doctors.

Your story does not surprise me at all. Did you see a military doctor??

When I was just a little girl I suffered from chronic ear infections. My father was in the military and so each time I went to the doctor it was a military doc. I can remember at every appointment the triage nurse always mentioned that my BP was high. Here sat a skinny little 8 year old girl with high blood pressure and nothing was ever done about it. They always blew it off as “Oh, you’re just nervous at seeing the doctor” or “Oh, you much have had a lot of sugar with your breakfast.” There was always an excuse as to NOT check out my high blood pressure. By the time I was 16 my school nurse saw that I was spilling protein into my urine….I had a school physical because I was trying out for the field hockey team. The nurse said I needed to get check out by a doctor before I could play on the team. So back to the military doctor I go….Did he check to see why I was spilling protein into my urine??? Oh He!! No. He just signed the paper saying I was fine to play on the field hockey team. By the time I was 20/21 years old I had less than 10% kidney function.
Two kidney transplants later I am still here despite the military’s total disregard for my health.  I feel sorry for soldiers who have nowhere else to go for health care.   

Hang in there Joy!! It’s terrible thing when the very people you’re supposed to trust when you have a health problem fail you to the point where your life is put into danger.

[Brightsky69]

I have had my share of run in's with civilian doctors too. My last neph doc was not all that. The neph doc I had with my first transplant was a dream.