Blindsided by ESRD!

[laniepoo7]

Hi everyone!

I'm very happy to have found this community.  There is so much information from people who are living with kidney disease here, it's great!

My name is Lane and I'm the mom of a 5-year-old boy and wife of a music producer.  For work, I am an IT Project Manager which is really fortunate because I can work from home a lot.

My story starts February 2017 with high blood pressure.  I was very overweight and decided to lose the weight in a bid to keep off the BP meds.  I lost 20 pounds and my BP went down (for awhile).  I continued to lose weight until I lost a total of 60 pounds over the course of 14 months and felt just fine. 

Then in In April of 2018, I did not feel great.  Generally run down and nauseous a lot of the time.  I finally went to the doctor (after negative pregnancy tests) to see what was wrong.  She took blood tests and I got a call at 1:30 in the morning telling me to go to the hospital because my potassium was off the chart.  Within 2 hours, I arrived and was getting a catheter put into my neck to have my first round of dialysis.  THey then installed a permacath in the hospital, told me I had kidney failure and that I'm looking at 5% function now.

- I never stopped making urine
- I never had any swelling
- No symptoms except High BP

I'm now on PD and one week from being listed for a transplant.

[iolaire]

Welcome to the group.

[Rerun]

Oh, wow, it was like reading my own story.  One symptom you didn't list at the bottom was nausea.  So, I thought I was maybe pregnant.  Wasn't.  Only the doc thought I had Vertigo.  So he had me on meds for that and I just got sicker.  OK .... that was 32 years ago. 

Welcome ~ and I hope you find some information here.  I hope you get a transplant soon. 

WELCOME - RERUN, ADMIN.   

[Paul]

 
Hello Lane. Welcome to the site.

No symptoms except High BP

High blood pressure may not have been a symptom, it may have been a cause. High BP is a great cause of kidney destruction.

[Charlie B53]

Welcome to IHD!

Far too many of us fail to have regular Dr check-ups for many many years as we feel just fine.

High blood pressure is known as the 'Silent Killer' for the simple reason it destroys the kidneys ability to filter out the toxins.

Yea we still make urine, foul stinky foamy urine.  But that is mostly the protein leaking out of us.  NOT the toxins that continue to build up until we finally succumb to the poison and go to the ER.

I'm glad you have finally started getting the treatment you need to begin rebuilding your life.

Dialysis life won't be the same as before, but it sure can be a quality of life once we learn how to eat properly and also learn how to control our fluids.

Here's to Hoping you have a smooth transition.

Take Care,

Charlie B53

[Michael Murphy]

Most of us were taken unaware in this you are not alone.  However there is good news you are producing urine due to Residual Kidney Function RKF.  During my first 4 years on dialysis I produced  enough urine I was not retaining fluid,  this.had 2 beneficial side effects  no fluid restriction and great labs so no binders. 18 months ago I had a major heart attack and went through 2 angioplasties.  This resulted in virtually all RKF going away so I know how much easier this is with RKF.  Good luck and welcome the site.

[SooMK]

Welcome to IHD!

[laniepoo7]

High blood pressure may not have been a symptom, it may have been a cause. High BP is a great cause of kidney destruction.

I asked my transplant nephrologist about just that, and he is certain that the kidney problems caused the high blood pressure, not the other way round.  My creatine levels were abnormal before the high blood pressure, but the doc thought it was OTC medicine-induced.  It is definitely autoimmune that did my kidneys in.

[kickingandscreaming]

Blood pressure and kidney function are in a circular loop.  High BP can cause kidney failure  AND poorly functioning kidneys can cause HBP.  I think I lost my kidneys from HBP but now that I'm on dialysis my BP has been excellent.

[iolaire]

laniepoo7 I agree with the others based on my discussions with my nephrogist in the six years leading to dialysis. I knew from the 1990s I’d have kidney problems from my lupus but it became serious in 2007 when I had very high blood pressure. Dr said that was caused from kidney and then there is a loop where uncontrolled blood pressure can exasperate the kidney failure. So we tried to delay kidney failure by controlling blood pressure but at the end of 2013 it still was time for dialysis. 

[cassandra]

Welcome to the site Lane


   


Take care, Cas

[MooseMom]

Welcome to our community, Lane!

Has anyone made a defitinitive diagnosis of what exactly caused your kidney failure?  Did you ever have a biopsy?  If it is indeed an autoimmune issue, does your tx neph think it could reoccur in a transplanted kidney (I'm thinking something like fsgs)?


Anyway,  I'm glad you were able to begin dialysis before you became dangerously ill.

Good luck with getting on the transplant list!  That will be very exciting!

Thanks for joining us!

[Michael Murphy]

When it became apparent I had ESRD my nephrologist told me never to take ibuprofen (Advil) since it was bad for your kidneys.  My sister did not have ESRD but had high blood pressure her doctor banned her from ibuprofen.   So if you took a lot of Advil it may have contributed but it’s not a given.

[laniepoo7]

@moosemom:  I have not gotten a definitive diagnosis.  They cannot do a kidney biopsy because my kidneys are so scarred they do not want to take the risk (my kidneys are very, very small now and the doctors are shocked that I still produce urine at all).

The nephrologist seems to think that it was a process that was triggered by my pregnancy and since I'm not planning to have any more children, that the same thing would not happen again.  I plan to meet with the nephrologist again to see if I can get more information.  From what he said, it was a feedback loop where the attack on my kidneys raised my blood pressure, and the high blood pressure weakened my kidneys which raised my blood pressure more.

I'm officially on the list in Michigan as of Friday  So I guess now it is hurry up and wait.  I also plan on listing in Ohio (since I'm only an hour away) and canvassing for a live donor as well.  Thanks for your well wishes!

[MooseMom]

The nephrologist seems to think that it was a process that was triggered by my pregnancy and since I'm not planning to have any more children, that the same thing would not happen again.

This is really interesting because I was diagnosed with pre-eclampsia toward the end of my pregnancy, and as a result, I ended up spending a total of 6 weeks in the hospital.  I was told that the delivery of my baby would be the "cure".  Well, it wasn't.  I continued to lose protein, so it was suspected that I had an underlying renal problem, and that turned out to be fsgs.  Years later, my new neph suspected that my pregnancy somehow triggered the fsgs.  That makes sense because when you think about it, a woman's immune system has to be "programmed" to recognize the developing baby as her own tissue, not "foreign".  And if fsgs, along with whatever your diagnosis really is, is essentially an auto-immune disorder, so it does make you think!

I'm officially on the list in Michigan as of Friday  So I guess now it is hurry up and wait.  I also plan on listing in Ohio (since I'm only an hour away) and canvassing for a live donor as well.  Thanks for your well wishes!

That's great news, and it is very smart of you to list in more than one place!  Well done!

[LorinnPKD]

Welcome!