“Mommy, I have the hiccups again”


Photo courtesy of http://www.mindentimes.ca/2012/07/11/non-profit-facility-provides-vacations-for-dialysis-patients

 

Dr Sue has been.  The lung infection has cleared and Vic’s saturation is back up to 98%!  What a little trooper she is!

She is however in Stage 4 renal and liver failure.

Chronic Kidney Disease is diagnosed by the eGFR and other factors, and is divided into five stages:

Stage of Chronic Kidney Disease eGFR ml/min/1.73 m
Stage 1: the eGFR shows normal kidney function but you are already known to have some kidney damage or disease. For example, you may have some protein or blood in your urine, an abnormality of your kidney, kidney inflammation, etc. 90 or more
Stage 2: mildly reduced kidney function AND you are already known to have some kidney damage or disease. People with an eGFR of 60-89 without any known kidney damage or disease are not considered to have chronic kidney disease (CKD). 60 to 89
Stage 3: moderately reduced kidney function. (With or without a known kidney disease. For example, an elderly person with ageing kidneys may have reduced kidney function without a specific known kidney disease.) 45 to 59 (3A)
30 to 44 (3B)
Stage 4: severely reduced kidney function. (With or without known kidney disease.) 15 to 29
Stage 5: very severely reduced kidney function. This is sometimes called end-stage kidney failure or established renal failure. Less than 15

Only last week Vic complained to one of her siblings that she is battling with hiccups.  We laughed about it and reminded her of the old wives tale that if you steal you will get hiccups… We wanted to know what she had stolen… If any person in the world told me then that hiccups is a symptom of kidney failure I would of thought they were taking the Micky out of me!

Renal Failure Symptoms                                                                   http://www.mayoclinic.com/health/kidney-failure/DS00682/DSECTION=symptoms

Signs and symptoms of kidney failure develop slowly over time if kidney damage progresses slowly. Signs and symptoms of kidney failure may include:

Signs and symptoms of kidney failure are often nonspecific, meaning they can also be caused by other illnesses. In addition, because your kidneys are highly adaptable and able to compensate for lost function, signs and symptoms of kidney failure may not appear until irreversible damage has occurred.

 Chronic kidney failure can affect almost every part of your body. Potential complications may include:

 Treating the cause of kidney failure

Depending on the underlying cause, some types of chronic kidney failure can be treated. Often, though, chronic kidney failure has no cure. Treatment consists of measures to help control signs and symptoms of chronic kidney failure, reduce complications, and slow the progress of the disease. If your kidneys become severely damaged, you may need treatments for end-stage kidney disease.

Your doctor will work to slow or control the disease or condition that’s causing your kidney failure. Treatment options vary, depending on the cause. But kidney damage can continue to worsen even when an underlying condition, such as high blood pressure, has been controlled.

Treating complications of kidney failure Kidney failure complications can be controlled to make you more comfortable. Treatments may include:

CONCLUSION:  Vic’s kidney failure is irreversible.  There are no drugs to reverse the process.  The question can only be whether Vic will go onto dialysis….  The decision will be her’s to make.

 

 

 

 

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“Worrying doesn’t empty tomorrow of its sorrow, it empties today of its strength.”


“Worrying is carrying tomorrow’s load with today’s strength carrying two days at once. It is moving into tomorrow ahead of time. Worrying doesn’t empty tomorrow of its sorrow, it empties today of its strength.” ~ Corrie Ten Boom – I read this on Dr Bill Wooten’s blog http://drbillwooten.com/2012/11/17/todays-strength/

This is so true.  I have been so worried about Vic’s latest symptoms   The body is such a complex intertwined mechanism…. I am absolutely fascinated at how everything links in… I just have to discover the function of the appendix and it’s interwoven functions…

Vic is having a lousy day.  She is exhausted and very swollen.  Despite the injections she has been nauseous all day.  This evening she had another vomiting bout.  Tomorrow we will see Dr Sue again.  Just maybe there is a 3rd anti-nausea type injection available

Vic also complained of a terrible “acidic” feeling.

I Googled her symptoms and found something that matches her new symptoms and blood test results.

 Metabolic acidosis

From Wikipedia, the free encyclopedia

In medicine, metabolic acidosis is a condition that occurs when the body produces too much acid or when the kidneys are not removing enough acid from the body. If unchecked, metabolic acidosis leads to acidemia, i.e., blood pH is low (less than 7.35) due to increased production of hydrogen by the body or the inability of the body to form bicarbonate (HCO3) in the kidney. Its causes are diverse, and its consequences can be serious, including coma and death. Together with respiratory acidosis, it is one of the two general causes of acidemia.

Other causes of metabolic acidosis include:

 Dr Sue said that Vic’s sodium levels are very low.  So I Googled “Low sodium Levels”

Abnormal sodium levels can be due to many different conditions.

A lower than normal sodium level is called hyponatremia. This may be due to:

  •  Addison’s disease – CHECK
  • Dehydration, vomiting, diarrhea  – CHECK
  • An increase in total body water seen in those with heart failure, certain kidney diseases, or cirrhosis of the liver – CHECK
  • Ketonuria – NEGATIVE
  • SIADH – POSSIBLE
  • Too much of the hormone vasopressin – VERY POSSIBLE
  • Use of medications such as diuretics (water pills), morphine, and SSRI antidepressantsCHECK

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001397/

This truly scares me.

Earlier tonight Vic and I chatted over a cup of tea and I said to her “Baby, I am a little worried about what is happening in your little body”

“Do you think I am in trouble Mommy?  Please be honest!” she pleaded.

*Sweetie, I think you are in more trouble than you realize” I answered

“Mommy I can feel it in my body.  I am just so tired.”

“Sweetie, if Dr Sue says you must go onto oxygen tomorrow you MUST”

“I don’t think so Mommy.” Vic replied

“You have to make it to Christmas Baby…”

“Do you think it is that close Mommy?” Vic asked

“It could be Vic….” I answered

“Do you think we will get to Italy?” Vic asked.

“We will go in January” I promised

“I will stay in bed and rest for a whole month if it enables me to go to Italy….” Vic promised

I have increased Vic’s Addison’s medication.  Prevention is better than cure and Italy awaits!

 

 

 

 

Kidney stones on the move….


Another Hospital Passage – Different Day

On the 23rd of July, we found out that Jared had kidney stones.  (https://tersiaburger.com/2012/07/23/deje-vu-7/).  At the time the kidney stones were  not obstructing the urinary track so the decision was made, by the Urologist, to leave it and reassess the situation in 6 months.   On Friday night, at a Youth Meeting, Jared’s kidney stones gave notice that they had started to move!

I was petrified that if we took him to Casualty we would end up with a bum Urologist (https://tersiaburger.com/2012/07/27/vic-olympic-champion) so after researching “Kidney Stones” on Google we (I) decided to monitor and control his pain, let him drink lots of water, anti-inflammatory tablets and a urinary track antacid…  In the event of him “vomiting from pain” or “passing blood” we would be forced to be at the mercy of the On Call Urologist!

By Sunday night the poor soul was quite pale and said his pain was at an “8”.  There was no sign of bleeding and an insignificant level of protein in his urine (I kept testing his urine) and the Leucocytes, Nitrate, UrobilinogenpH, Blood, Specific Gravity, Ketone, Bilirubin and Glucose levels were all within the correct limits….

I managed to get an appointment with the Urologist for 10:00 this morning.  He did a scan and low and behold there was this large (6.6mm) kidney stone stuck in the  urethra…. At 15:00 this afternoon Jared was wheeled into the operating theater for the 2nd time this year.  Thirty minutes later the urologist came through and told us that Jared had passed 5 of the original 6 kidney stones – including the one that showed up as causing an obstruction at 10:00 this morning!  The child did not whimper or moan!  He was stoic in his pain!  The 6th kidney stone was dissolved with a  procedure called lithotripsy. In this procedure, shock waves are used to break up a large stone into smaller pieces that can then pass through the urinary system.

In the passage of the hospital Vic said to me “Mommy, I am so grateful.  Jared got through the operation like a real trooper.  ”  I was immediately filled with an all-consuming anger.  The operation went well, Jared did get through it like a trooper but what has started happening in his young body?  Adhesions people!!  Flippen adhesions!!!!

I said nothing but she saw my face.

As soon as we had Jared settled and comfortable I brought Vic home.  She was totally exhausted and in absolute agony!

In the car Vic said to me “Mommy, you seem so angry with me?  What have I done?”

“I am angry that an innocent child is going through the same hell that you went through as a child”

Vic’s father and I were not aware of the Osteogenesis Imperfecta gene on her Dad’s side of the family.  We made the decision not to have more children after Vic was diagnosed.  We were determined to never subject another child to OI.

From a young age, we told Vic that OI was a genetic disorder.  She KNEW that she should not have children.  She fell pregnant TWICE.  I know she was on  the Pill, suffered from SEVERE endometriosis and that she fell pregnant against all odds.  Yet, she chose to carry the babies and risk them being born with the OI gene…. Despite the Dept of Genealogy at Wits University, her gynecologist and doctors strongly advising against it!

I love the boys with every fiber in my body!  I am so grateful that they are in my life.  They have enriched my life in every way.  I cannot imagine my life without them.  I don’t want to live without them.    But, almost every day of my life I counsel at least one of the boys that, only if the OI gene can be isolated, should they consider having children one day…  They see their mother’s suffering.  They live her suffering!  Jared is starting to live his own suffering.

We are seeing Jared regress into Osteogenesis.  It has been obvious for a long time that Jared’s ligaments and tissue are affected.  He has only had a couple of mild fractures but he is always hurting somewhere.

Today Vic said that I have become “hard”.  I suppose I have.   Vic thinks I am hard because I believe in death with dignity.  Because I stopped all aggressive treatment for Alzheimers Pneumonia after my Dad no longer had any control over his body functions and had forgotten how to swallow or walk!  Vic cannot believe that I want to talk to the boys about considering vasectomies when they become sexually active (or earlier).

I cannot do this again.  I am venting.  I am so angry!!  I am angry with a debilitating disease and yes, I am angry with Vicky for allowing this dreadful gene to be passed on to an innocent child.

This vicious cycle has to stop!