How did you learn that your kidneys were failing?

[angieskidney]

I was always shivering freezing before I found out I had kidney problems and am still cold even tho
my blood count is much better.  It's strange how the summer heat hasn't bothered me
much this year, but boy do I dread winter cold.

I find that in the winter cold that my fingers and toes go solid white like someone in a coffin I don't know why and no one can give me any answers! But now in Hemo is even worse because it is ALWAYS cold in there

[Python]

I find that in the winter cold that my fingers and toes go solid white like someone in a coffin I don't know why and no one can give me any answers! But now in Hemo is even worse because it is ALWAYS cold in there

Often people with kidney problems get Reynauds Disease too.  It is when you feel the cold really bad and even on a warm day you can feel cold.  It is really horrible and your extremities can go numb.  It is really sore when they thaw out too.  I try never to get that cold.  It has something to do with the peripheral nerve endings.  Usually they have a protective sheath, but with some kidney diseases (Alports Syndrome is one of them) the protective sheath is often missing or not properly formed.




EDITED:  Fixed Quote - Goofynina/Moderator

[Python]

Everyone seems to have different symptoms, but high blood pressure seems to be one of the most common along with tiredness and nausea.

What about the other end of the BP scale i.e. low blood pressure.  I have low blood pressure, can be anything between 107/72 to 92/58 or less.  I carry Alports Syndrome of the type where I have a 30% chance of developing the full-blown disease before I'm 60 (10 years time).  I am a smoker (no I won't give up - I enjoy smoking too much especially with my second love - coffee) so you would think BP would be raised more than it is as smoking is known to raise blood pressure.  I find I get tired a lot easier than I used to but that's probably due to my age - not spring chicken any more (more like old broiler).  Any ideas?

[kevno]

1972 my Mum finally got the local Doctor the send me to see a specialist for tests. After six years of bladder infections. It was Reflux, The Surgeons did try two operations to save the one kidney I was born with, but it was too late. So I started dialysis 1977 at the age of ten.

[kitkatz]

Yep, Kevno.  I was treated from age 2 for reflux.  Two surgeries on the bladder, then urostomy surgery at age 12.  I was lucky, but came real close to being on dialysis, too.

[Rerun]

Kitkats - You have a urostomy?

[MelissaJean]

  Kinda funny how we can fool ourselves into a mode of thinking so far from reality but at the time I really believed it. 

How true!!  I found out my kidneys were beginning to fail in January 2006.  Slowly my appetite began to decrease.   I said it was because I become less active when I don't work.  I also started loosing weight and I justified it by saying I was exercising more.  (see the contradiction, yet I truly believed it).  Three weeks before my kidney's "collapsed" I had a sinus surgery, and my wisdom teeth pulled.  I thought the constant fatigue, loss of appetite, and nausea was an adverse reaction from the anesthesia they gave me, even if it was a week after both surgeries.  I went my clinic for a routine visit and the bloodwork showed that I had renal failure and was rushed to the hospital.  Looking back I could see all the signs of kidney failure, but at the time I fooled myself into "thinking so far from reality."

[Smokey]

In April of this year I had my family Dr. do a routine blood test because I felt bad, had no energy, got exhausted quickly and my ankles were swelling all the time.
My Dr. called me at work and said he was very concerned about my results and wanted me to see a Neph asap, my Neph had more bloodwork done and a 24hr urine and that's when I found out I was stage 5.

[angieskidney]

Sorry so long 

I find that in the winter cold that my fingers and toes go solid white like someone in a coffin I don't know why and no one can give me any answers! But now in Hemo is even worse because it is ALWAYS cold in there

Often people with kidney problems get Renaud's Disease too.  It is when you feel the cold really bad and even on a warm day you can feel cold.  It is really horrible and your extremities can go numb.  It is really sore when they thaw out too.  I try never to get that cold.  It has something to do with the peripheral nerve endings.

I tried to talk to my Nephrologist about that .. upon research on the net that was my conclusion too .. but he said I should see the Surgeon as it is MOST LIKELY related to the fistula .... EVEN THOUGH I HAVE HAD THOSE SYMPTOMS BEFORE I WENT ON HEMO DIALYSIS....

Anyway, when I said what I thought it was and described the symptoms and said I had them before I even started dialysis (before even PD in 2001) he still said it CAN'T be Renaud's Disease because I don't usually let my fingers and toes get extendedly (is that a word?) cold where they get red or blue.

I got irritated that the doctor would not give my findings a chance! I mean my fingers go numb when I take something out of the freezer! Sometimes even out of the fridge! Especially when my BP was 87/53 until they FINALLY agreed to take me off of all the BP bills!!! 

1972 my Mum finally got the local Doctor the send me to see a specialist for tests. After six years of bladder infections. It was Reflux, The Surgeons did try two operations to save the one kidney I was born with, but it was too late. So I started dialysis 1977 at the age of ten.

Just like Kevno and Kitkatz, I was born with Reflux but they didn't discover it as the cause of all the bladder infections until I was 9 and it was too late for them I was on dialysis for the first time when I was 16.

  Kinda funny how we can fool ourselves into a mode of thinking so far from reality but at the time I really believed it.

How true!! I found out my kidneys were beginning to fail in January 2006. Slowly my appetite began to decrease. I said it was because I become less active when I don't work. I also started loosing weight and I justified it by saying I was exercising more. (see the contradiction, yet I truly believed it). Three weeks before my kidney's "collapsed" I had a sinus surgery, and my wisdom teeth pulled. I thought the constant fatigue, loss of appetite, and nausea was an adverse reaction from the anesthesia they gave me, even if it was a week after both surgeries. I went my clinic for a routine visit and the bloodwork showed that I had renal failure and was rushed to the hospital. Looking back I could see all the signs of kidney failure, but at the time I fooled myself into "thinking so far from reality."

I was working for 9 years trying very hard to work up the corporate ladder, even being on call on a moments notice and missing medical appointments when it would have made me take too many sick days (we were really limited and I already knew the office was judging me on my health and I was up for a promotion I had been waiting for a long time for and wanted even at the risk of it all). I took over a very good position that they usually send someone to school for because I proved to know the job better than their student. Someone from health and saftey division of the plant who could go over the office's head guarenteed me the promotion I had been wanting. I put my all into this job that when I started feeling tired I just thought that was the reason why. Slowly people started commenting on my speed, asking why I was working so slowly and why I couldn't keep up when I was always a very hard worker. I was working as fast as possible and didn't notice how much I had slowed until even I started noticing I wasn't able to keep up. They put me in a slower position but then about 1/2 year later when I got a fever of 104 I knew I had lost my transplanted kidney. I didn't have any pain or any signs before that so I didn't know. I asked to go home but they told me my position was so important that if I went home they would have to shut down my section which was 1/3 of the whole plant!! Because I couldn't continue working 12-hr shifts afterwards once I started dialysis I had to quit and had to claim bankruptcy as I was no longer able to keep up on all the bills and all the things I was already used to 

I remember only days after the fever and going home early (they wouldn't let me go until 4 hrs later) that I was getting weaker and weaker fast! I wasn't even able to ride my bike a block to go pick up my much needed meds from the drug store (and I was too stubborn to let them deliver it thinking, "I am young! I can get it!").

My HB was 66 mg/dl (min for women is 120 mg/dl .. Canadian readings). I think I have it right if I calculate that into American as = 6.6 g/dl

I did find this as well:

Hematocrit
 Male: 41-53%
 0.41-0.53
 

 Female: 36-46%
 0.36-0.46
 
Hemoglobin A 1C
 ≤ 6%
 ≤ 0.06%
 
Hemoglobin, blood
 Male: 13.5-17.5 g/dL
 2.09-2.71 mmol/L
 

 Female: 12.0-16.0 g/dL
 1.86-2.48 mmol/L
 
Hemoglobin, plasma
 1-4 mg/dL
 0.16-0.62 µ mol/L
 

[Python]

I tried to talk to my Nephrologist about that .. upon research on the net that was my conclusion too .. but he said I should see the Surgeon as it is MOST LIKELY related to the fistula .... EVEN THOUGH I HAVE HAD THOSE SYMPTOMS BEFORE I WENT ON HEMO DIALYSIS....

Anyway, when I said what I thought it was and described the symptoms and said I had them before I even started dialysis (before even PD in 2001) he still said it CAN'T be Renaud's Disease because I don't usually let my fingers and toes get extendedly (is that a word?) cold where they get red or blue.

I got irritated that the doctor would not give my findings a chance! I mean my fingers go numb when I take something out of the freezer! Sometimes even out of the fridge! Especially when my BP was 87/53 until they FINALLY agreed to take me off of all the BP bills!!! 

A couple of things I've learnt over the years is that you get no thanks for working your butt off for firms.  They will get rid of you before you can snap your fingers, no matter how good you are at your job.

The second is if you have a problem, research all you can about it from the Internet or good books then if you disagree with a doctor (which I do frequently) you at least know what you're talking about.  Often when they know they can't b*llshit you they back down and end up agreeing with you.  I remember one doctor a couple of years back (not kidney related) saying he wished that medical knowledge sites could be blocked from the Internet as too many people were questionning doctors' decisions.  What he really meant was too many people were finding out they were being given drugs or procedures which were detrimental to their overall health and compensation claims were soaring.  Doctors don't like losing their "God" status.  My own personal opinion is, if doctors were more honest and more prepared to listen to their patients, it would make for better doctor/patient relationships and ultimately improve the health of the patient.

As for Renauds.  I have had Renauds for years, but only found out (through the Internet) that it was often related to kidney diseases.  I really hate it.  Even of I am in a cool room in summer, I get it.  It starts with my right thumb.  It goes numb, then it spreads across my palm, up the rest of my fingers, up my wrist.  The worst I ever had was when it reached my elbow.  I couldn't even hold a cup with that hand and it was soooo painful thawing out.  Took over two hours to come back to normal.




EDITED:  Fixed Quote - Goofynina/Moderator

[angieskidney]

I have researched. That was how I found out the term in the first place to say it to the Nephrologist. But I don't have it like you do. It only goes as far as my 2nd knuckle. Maybe I don't have it? Maybe the doc is right?

[Python]

It varies in degrees according to each person.  Some have it worse than others.

[angieskidney]

How can I get diagnosed? Doctors here seem to never believe anything if you try to diagnose yourself and just want it verified.

[Python]

I'm not sure it can be verified per se but Renauds is not nice.

Best thing I can suggest is that in cold weather you wrap up nice and warm and get a pair of ski-mitts.  These really keep your hands nice and toasty.  I bought a really super pair in ASDA-Walmart last year for £4 (about $7.50)  They have an inner lining like a normal fingered glove which goes inside the mitt.  They go right over the wrist to about midway between the wrist and elbow and fasten with velcro so you can keep your hands and wrists nice and snug and keep the cold wind out

Another tip is wear a hat in cold weather.  You'd be surprised how much body heat you lose out of the top of your head.  I have a sheepskin pilots type helmet that covers my ears.  It's great when I'm walking the dog in the winter.  I don't care what I look like so long as I'm warm.

When you take things out of the freezer, try wearing a pair of oven-gloves and that should help.

[mallory]

Angie, It sounds like you have Raynaud's phenomenon, and I know it's hard to get doctor's to listen to you.   My fingers turn really, really white; then, as they warm up, they turn almost black.  Here's what it says in WebMD for treatment:

"There is no cure for primary Raynaud's phenomenon, although the condition often can be effectively controlled. You may be able to limit or lessen the severity of attacks by keeping warm; managing emotional stress; and avoiding medications or other substances that affect blood flow, such as nicotine, caffeine, or cold medications that contain pseudoephedrine. Avoiding beta-blockers, which are often used to treat high blood pressure and fast or irregular heart rates, is also advised. Beta-blocker medications slow the heart rate and decrease how forcefully the heart contracts, causing even less blood to flow through your capillaries and making symptoms of Raynaud's worse.

If Raynaud's phenomenon can't be effectively controlled with home treatment and it interferes with daily activities, your health professional may prescribe medications. Medications such as calcium channel blockers (including nifedipine), angiotensin II receptor antagonists (such as losartan), selective serotonin reuptake inhibitors (such as fluoxetine), and vasodilators (which are used to treat high blood pressure) may help increase blood flow to your hands and feet and relieve symptoms. Severe cases that don't respond to these therapies may be treated with bosentan (Tracleer), an endothelin receptor antagonist that blocks spasm or tightening of the capillaries. Treating Raynaud's with bosentan is an experimental use of the drug that is currently being studied.

Some alternative treatments have shown promise in treating Raynaud's phenomenon. Gingko biloba was shown in one study to reduce the number of Raynaud's attacks.2 Certain behavioral therapies have also shown positive results. Biofeedback training or autogenic training, in which a person attempts to control blood flow and skin temperature, may help in treating Raynaud's phenomenon.

If the condition is related to an underlying disease, a drug, or a specific activity (secondary Raynaud's), treating the underlying disease or stopping the drug or activity may also decrease the symptoms of Raynaud's phenomenon."

I heard that if you take Co-Enzyme Q-10, two 30 mg capsules in the morning and one in the afternoon, it will help.  I haven't done that because I haven't had a chance to ask my doctor about it, but I have a friend that swears it works for Raynaud's.  If your doctor agrees, it couldn't hurt to try it, I guess.

[angieskidney]

Thank you for all that I think I will make a new thread to continue this so look for it here! Thanks!

[MattyBoy100]

I found out after having a blood test cos my father said I looked ill.  I went to the Doctor and he took some blood and the next day he phoned me at work to tell me to get hospital immediatley cos I was to have a transfusion. I spent the next 2 weeks in hospital, I had Alports syndrome which affects hearing and kidneys in men mainly though women can show some symptoms but usually not full blown kidney failure.  At the age of 34, I thought I had made it in life without any serious illnessess!!!!

[Sax-O-Trix]

Could never hear out of my left ear, was always told it was a congenital hearing loss.  I had frequent urinary tract/bladder infections all through my childhood.  Wet the bed until I was 13.  When I was in the 3rd grade, about 8 years old, some brilliant dr. decided that I needed to have my urethera "stretched" because of the bed-wetting.  Didn't do a thing except start my needle phobia...

At age 18, I had a college physical and had protein in my urine.  The dr. said is was nothing, don't worry, probably just an infection. Duh!  Numerous urine tests over the next 12 year and all were positive for protein and none of the dr.s were concerned, so neither was I.

At age 30, while pregnant for my first child, an ultra-sound tech asked me if I had renal problems and I said "Not that I am aware of".  The ob/gyn told me when I asked about the comment that my kidneys were about 2/3 the size of normal...  That perhaps I should see a "urologist" after the birth of my child.

I went to a "urologist" who confirmed that my kidneys were 2/3's the size they should be, but didn't seem concerned.  My husband and I decided to get pregant with baby number two.  Who know's what my kidney function was.  I had a blood test for life insruance at that point and was denied because my creatinine was a whopping 1.2!  That set the ball rolling.

Four months into my pregnacy, my 30 year old husband died unexpectedly from a cardiac arrhythmia from, get this...  an electrolyte imbalnace due to dehydration due to having diarrhea and throwing up from a stomach bug.  He died because of a low potassium level and I could die from a high potassium level...  Nice irony.

Anyway, after the birth of baby number two at age 33, I started seeing a nephrologist.  I was told to go on a low protein diet (gained 30 pounds because I only ate carbs.) and was monitored for the past 10 years.  Added BP meds over time, Zocor, Calcitriol, Vitamin D and Iron tabs.  DX with "Branchial-Oto-Renal Syndrome", but I wonder about Alports...

So, here I am at less than 15% function, hoping for a pre-emptive transplant from my brother.  He is being evaluated this week.  He passed the initial blood tests, not he he has to go through the painful stuff involving IV's and cathaters.  PD is what I am hoping for as an alternative if need be...

[MooseMom]

I was living in London.  I was 28 weeks pregnant, and my father back in Texas had a heart attack.  I had to get a note from my GP that I was healthy enough to fly; I had to give this to British Airways.  My GP didn't check me out, he just gave me the note.  I flew to Houston to be with my dad, and while I was there, I remember feeling quite unwell.  I flew back to London on a Sunday morning; Monday morning I was back at work in the City.  Tuesday evening I had my first antenatal class, and my husband noticed that my ankles were swollen.  Wednesday morning I had my first weekly antenatal appt with my GP; I was showing protein in my urine, so he told me I couldn't go back to work and I had to stay in bed.  Next day, the council nurse came by and reported that I had the highest level of proteinuria she'd ever seen.  She told me to get to the hospital ASAP.  I was in hospital a total of 6 weeks with pre-eclampsia.  The proteinuria persisted months after I gave birth, so I was sent for a biopsy, and that's when they discovered I had fsgs.  My happiness with my new baby lasted all of 6 months.

[murphy]

It started on 2002.  I had swelling in my right foot and ankle so I went to GP.  They ordered blood test and ultrasound to look for a blood clot.  All test were fine but I was now feeling really tired.  Next they sent me to ortho.  More test and no results.  Next step was vascular Dr.  They did another ultrasound and suggested that alot of heavy people had swollen ankles.  Note all my swelling was only on the right side. Duh.  I was sent to a cardio where he took one look at me and said it was either kidney or congestive heart disease and asked why nobody ever did a urine test.  Major protein but creatinine was normal. Biopsy confirmed FSGS.  I could have started treatment 8 months earlier if one of the docs would have thought to check urine

[kellyt]

Totally by accident.  Thought I had a UTI and was currently working for a specialy group that had an inhouse lab.  The lab tech did a dipstick UA on my and noticed I was spilling 4+ protein.  I was referred to a Nephrologist down the block and went from there.  This was in 1994.  We must have caught it early.  Up until the day I transplanted I was never sick one day due to ESRD.  Tired, yes, but never sick.   I also found out at that time I had hypertension.

[Stoday]

I was very lucky because I was diagnosed as having failing kidneys in 2003, seven years before I had to have dialysis.

I'd been working in Pakistan, got bitten by an insect and got a celluitis infection. At first I thought I had malaria, especially as I got the shivers. But my GP sent me straight to hospital "do not go home, go straight to hospital". I was there for a week; the skin on my leg peeled off in sheets. But I had a number of tests including checking out for possible malaria (I was clean). I was then told that my kidneys were failing. After further investigation, I found myself to be at stage 3 with 20% function.

I was lucky because I had plenty of time to slow down the progression of the deterioration and to get used to the idea of eventual dialysis. I did imagine that dialysis would be far, far worse than it turned out to be. 

[Ang]

it was caught by pure fluke,had been  on annual leave and visiting my now wife,went to the gp,abdomen looked rather large(i just thought i'd been in a good paddock on holidays,blood test ultra sound,you have PKD what  the.
13 years later, now transplanted nearly 3 weeks ago.
should figured something was up all those years ago,mum died of renal disease when i was1

[romanyscarlett]

When I was 17 I started getting headaches so I spoke to my doctor about them. They checked my blood pressure which was sky high and gave me a machine to monitor my blood pressure 3 times a day for a week. After I did that I didn't hear anything further from them.

A year later the headaches were getting worse so I made another appointment but when I got there my doctor was sick so a locum was filling in. He checked my blood pressure and told me it was 240/180 and that he hadn't seen an 18 year old with a figure that high. I told him it was fine because my doctors knew had known about it for a year. I remember him sitting there with his mouth agape for a couple of seconds and then he marched me into the reception area and told them that there was something seriously wrong with me and it was their duty to find out what it was immediately.

I was sent to have an ECG and a heart echo scan but the tests came back negative. As a last resort they sent me to have an ultrasound of my kidneys. By this point I was 19 and in May 2004 I was told I had PKD. There is no history of renal problems in my family which is why it wasn't picked up straight away as the cause of my high blood pressure.

I'm now 25 and have HD 3 times a week. I had my right kidney removed in April. The left one was due to come out on 6th October but I have deferred this because of ongoing problems with my fistula.