Monday, March 08, 2010

National Kidney Month

I'll bet you didn't even know there was such a month.

I didn't either.  Until four years ago when the doctor gave me some news that would change my life.

You already know that I have kidney disease.  I was diagnosed during our adoption physicals, after countless(sometimes painful) tests and finally a kidney biopsy.   When the doctor gave us the news we were completely in shock.  Kidney disease was so far off of our radar.

Actually it wasn't even *on* our radar.

At the time of diagnosis the prognosis was not great.  My blood pressure was high(because my kidneys were not functioning properly),  and there was an alarming amount of protein in my urine.  My nephrologist at the time told us that if we couldn't get these main factors under control it was likely I would need to go on dialysis within the next 5 years and have a kidney transplant within the next 8.

There was no treatment.  No cure.

Have ever been in a doctor's office and had them tell you something that would change the course of your life forever?  It is overwhelming.  Confounding. Terrifying.   The doctor is trying to give you all  this information and the only thing that keeps rolling around in your head is "There is no treatment for this.  No cure."

We found out on a Thursday afternoon.  We didn't talk about it much in the car on the way home, which is odd for us.  As soon as we got home I went into my bedroom and went to bed.  It was 5:00 at night.  That was my way of not dealing with it.  If I was asleep then we couldn't talk about it, think about it.  I went to work the next day and tried not to think about it some more. I think I ended up leaving early that day.  That weekend was a blur but I distinctly remember sitting on our couch crying and saying over and over to Joe "But I don't want to have Kidney disease".

At that point we thought our adoption was over.  Our adoption agency had already closed for the weekend so we weren't able to call and find out anymore information until Monday.  It was the longest weekend of our lives.  Finally Monday rolled around and Joe called them first thing. They told us that if we could get a letter from the doctor that was worded very specifically, that it should be fine. As it turned out,  my neprologist refused to write that letter.  It took months and months of explaining and phone calls and finally begging before he finally agreed to write it.

I am no longer seeing that doctor. :)

There were many symptoms that should have tipped us off that something was not right with my health.
Suddenly my blood pressure became high.  I have always had low blood pressure.  Sometimes it even bordered on too low and I would feel faint.  (Did you know that your blood pressure is directly related to your kidney function? I didn't).

About a year before my diagnosis whenever I would go to the doctor they would tell me my blood pressure was slightly on the high side.  I remember thinking that was odd, given my history of low blood pressure  but when I questioned the doctor about it he would tell me "Sometimes people get nervous at the doctor so their blood pressure rises".

This happened over and over again. Every time I would tell Joe in the car on the way home "But I wasn't nervous.  I didn't feel nervous at all in there. Why would my blood pressure be high??"

That should have been my first clue that something was wrong.

The second clue was that there was blood in my urine.  But I didn't know it was blood.  I thought that blood in your urine would look like well, blood.  Red.  Mine consistently looked smoky brown and somewhat like tea or cola.  I thought that it meant I should be drinking more water so that's what I did.  Every time my doctor sent me to have blood work done and a urinalysis, he would call me and ask me if I was menstruating when I had my urine sample taken.  Every time I would call them back and tell them that No, I had not been menstruating when I gave my sample.  He would have me go back for another sample and lo and behold, there would be blood in my urine again.  This happened many, many times over the course of a year.

The third clue was the headaches.  Oh my goodness the headaches.  Like nothing I had ever experienced before in my life.  I had suffered from Migraines my whole life so we(myself and my doctors) figured they had just gotten worse over time.  The strange thing about these headaches is that they would often come on in the middle of the night. I would go to bed fine and one would come on while I was sleeping that would be so bad it would actually wake me up.  Simply awful.

That is one of the main symptoms of high blood pressure. Another piece of the puzzle that hadn't yet clicked into place.

I also experienced a swollen, puffy face, ankles and feet.

The last symptom I had was extreme exhaustion. This was one of the symptoms that probably never would have caught my attention had it not been for the other symptoms.  I mean, everybody's tired, right?  This went beyond tired. I was coming home from work  at 3:00 in the afternoon and going right to my bedroom and taking a two-three hour nap every day only to get up and make dinner and go back to bed at 8:30 or 9:00 at night and sleep through the night. On the weekends I would often sleep until noon, only to go back and take a nap at 3:00.

When I look back on that period of my life now I realize I was missing so much.  People at work would ask me if I had seen a television show that had been on the night before and I would  say "No, I haven't seen it.  Don't tell me what happens.  I'm going to watch it this weekend". (This was before Facebook where every single thing was announced before we can see it on the West coast.)

I was sleeping my life away.

If you have read my blog for any length of time you know that I did a 6 month course of heavy steroids and it amazingly shocked my body into remission.  This happens in only 1-3 percent of the cases. With blood pressure medication,  a diruetic and Fish Oil tablets, I was able to maintain that remission until only recently.

At my last two visits with my nephrologist the protein levels in my urine have come back slightly elevated.  So technically I am not "in remission" any longer, but my condition is "stable" and my doctor believes if we can maintain these levels I won't have to worry about a kidney transplant for another 15-20 years.  This makes all of us(my doctor, Joe, Me) extremely happy.

Even though my kidney disease is stable now,  there was irreversible damage to my kidneys during the time it went undiagnosed(which is basically  my entire life.)  I have symptoms that I will likely have for the rest of my life.

I still feel tired often.  My body needs more rest than a "normal" person.  If I don't get it, I start to feel sick.  Sore throat, body aches, and headaches that  never develop into anything and go away after a couple of days.

Sometimes I have dark circles under my eyes, even if I have gotten plenty of rest.  My eyes are often puffy too, on my eyelids and above, near my eyebrows.

There is often blood in my urine still, although nothing like it was before.

I often have lower back pain, or "flank pain" as they call it.  A dull aching pain in my lower back that will last for several days and then disappear. 

These are things that I will have for the rest of my life.  I have learned to live with them and plan my life accordingly.  If I feel tired, I take a nap.  Without guilt or worrying about all the stuff that needs to be done around the house.  If my body needs rest, I rest.  I can't lift heavy objects.  It can exacerbate flank pain.  So I don't do it.  Ever.  Sometimes standing for long periods of time can cause my back to hurt too.  It's one of the reasons I left my old job.  It was too physically demanding.  If we go somewhere that requires lots of standing(like Disneyland), we take a lot of breaks.  We sit on benches a lot and people watch until I feel good enough to continue.

If you got all the way to the end of that, then you really are a good friend :)

I guess what I would hope for people to get out of this, me telling my story, is to pay attention to your body. Don't ignore signs you might be having.  If something doesn't seem right to you , it probably isn't.  Don't be afraid to question your doctor, to ask for blood work and tests to be done.

I have learned that I have to be an advocate for myself and if I can't get the answers I want from one doctor it's o.k. to go looking for another. It isn't about protecting your doctor's feelings.  It's about protecting yourself.

Over the next month I will be posting some facts about kidney disease. The signs and symptoms and FAQ. Hopefully you won't need any of that information.  :)   But it doesn't hurt to be educated.


Jenna said...

Thank you for sharing your story, I have always wondered about the details. It is also nice to know it is awareness month. I will look forward to hearing more of the facts through out this month.

Shannon said...

Thank you for opening my eyes to something I had no idea about.

M3 said...

Great information, thanks for sharing it. I still get chills every time you mention a transplant, by the way, even when it's decades out. Major stuff. Huge hugs.

I have blood in my urine all the time too, by the way, actually just had to have a series of scans done today to make sure I wasn't having kidney problems. :-(