RECOVERY AFTER PACEMAKER IMPLANT
JC, my handsome young son had a dual chamber pacemaker implant on 10 April 2008.
He is doing fine, with a few symptoms still affecting him in a bad way, like nausea and chronic insomnia - Not to mention the pain at the implant as well as the psychological impact!
The Dr. said he implanted the “ROLLS ROYCE” of pacemakers and that he can even play rugby again, without taking too much impact!!! How do you do that??
The cardiologist had his work cut out for him; (excuse the pun) trying to make a pocket for the pacemaker, without damaging JC’s pecs (pectorals) muscles. These are the two large, flat muscles that run across the surface of your chest. JC trained like a lunatic to define his pecs and increase his chest size and of course that included a very healthy diet with no fats, and his discipline never wavered.
You can actually see and feel the metal case under his skin, because there is no FAT to disguise/hide it.
He is not very happy with the scar – it didn’t heal properly and formed a bad Keloid...
I do have a genetic susceptibility to this type of scarring, so it worries me a lot at this stage of this unreal race...
JC will have to come to terms with the fact, that his RUGBY career is over!
He is so fit, strong and well-built and so keen on his rugby – what a waste.

He achieved everything that he could in every age group and that will be something special to cherish in years to come.
But at least he can still concentrate on ‘body building’ - luckily he’s addicted to gym work and that should keep him happy and occupied
He can support his younger brother Jules when he plays rugby....

WHY DOES MY SON’S HEART BEAT TOO SLOWLY?
The most common medical condition needing a pacemaker is “BRADYCARDIA”
Bradycardia means the heart rate is too slow or irregular to meet the demands of the body. JC’s heart rate dropped to 31 on the Holter ECG monitor.

His Symptoms of Bradycardia included:-

Dizziness, extreme fatigue, angina, shortness of breath and insomnia - fainting spells is another symptom which he didn’t have.

With him, his Bradycardia is the result of his athletic training; which reduced his resting heart rate to 40 – 49 which they all assumed at first, was due to his fitness level!!

Such a slow resting heart rate is seen as a normal effect in trained athletes and is usually taken as a sign of good aerobic fitness……….

Two types of rhythm disturbances that cause Bradycardia symptoms are SA node disease
(sick sinus syndrome) and heart block SINOATRIAL (SA) NODE DISEASE

After numerous ECGs and 24hour testing, etc it was found that his Bradycardia occurred because of a heart rhythm disturbance that could be due to a congenital defect. (Sometimes the precise cause is unknown)

Rhythm disorders of the SA node are described as “Sick Sinus Syndrome”.

Sometimes the SA Node, YOUR HEART’S NATURAL PACEMAKER cannot begin a heartbeat or cannot increase the heart rate.
When this happens, other tissues in the heart often take over the job of the SA Node.

However, the other tissue often cannot maintain a consistent heart rate.

Or, the other tissue may create a rate that is too slow like in his case, or too fast for normal activities(n/a)

That’s why he had a pacemaker implant to solve this problem by taking over the job of the SA Node – (your heart’s natural pacemaker)

Only time will tell………

MY SON'S RUGBY CV




His dad is an old rugby springbok and played for the then Transvaal Province.


So, we have Lions and Shark supporters in the family.

He received a rugby scholarship for 5 years at high school level and
a 3 year contract with the Sharks.

He achieved the following:-

1998 - U12 Nike All Stars KZN
1998 - U13 Craven week KZN
1999 - U13 Craven week KZN
1999 - U13 Natal Clubs Captain and Player of the year
2002 - U16 Grant Khomo Week KZN
2003 - KZN U18 Craven week
2004 - KZN U18 Craven week
2004 – Private School 50 + games + honours
2004 - SA Schools
2005 - SA U19 World Cup Winners vs NZ in SA Durban
2005 - Natal U19 Sharks
2006 - Natal U21 Sharks
2006 - College Rovers (Club winners 5th year in a row) Basil Medway Competition
2006 - Natal Invitational Side (Sharks) vs Western Force (Australia)
2006 - Natal Sharks - Absa Currie Cup Premier Division
2007 - Natal Sharks U21 as well as 2007 Sharks squad
2007 - College Rovers (Club)

True scholarship consists in knowing not what things exist, but what they mean; it is not memory but judgment.
- James Lowell (1819-1891), American romantic poet, critic, editor and diplomat.

Pray

 

WORDS OF WISDOM

"If you cannot get rid of the family skeleton, you may as well make it dance."
George Bernard SHAW.

"You may delay, but time not ." Benjamin FRANKLIN.

Dual-Chamber Pacemaker for my son...

Permanent – dual chamber Pacemaker for my young son (21 years)who is/was a professional rugby player...


I don’t know where to start, because I’m still in shock!!

How do you handle the news that your young vibrant son who is extremely strong, handsome, a gentle giant and with a body to die for; must now accept the inevitable and live with a surgical implanted electronic device that regulates his cardiac arrhythmia for the rest of his life ????

How??

His story began in September 2007.
It happened during a provincial rugby game when he encountered breathing problems 20 minutes into the game.
The coach/biokineticist wouldn’t allow him to leave the field, and kept on saying, another 15 minutes, just keep going, you must get game fit!!! (Which he was)


Eventually he left the field on his own accord claiming he sprained his ankle and as he entered the tunnel he lost consciousness.
He was hospitalized in ICU at St. Augustine’s.

According to the Medics at hand at the rugby stadium, they thought it was an Asthma attack.


He saw 3 Pulmonologists, who said it's asthma related. He was on Singulair and Symbicord for a couple of months, but his health didn’t improve.
He was always complaining of fatigue.


Since then he saw 3 cardiologists who said his heart is fine, after ECG’s and heart scans etc. He saw his first cardiologist in 2000 when he was in grade 8
and went for regular check ups after that, as a precautionary measure,
but this entire group failed the grade!! Not one picked up anything!!


He is a super fit athlete with a heart rate of 45 - 49 and with the normal sport enlarged heart. His heart is 100% according to all the cardiologists.


He continued playing rugby but was really battling with fatigue and breathing problems. He couldn’t play the full 80 minutes.
However he was still under contract and his rugby coaches still expected him to train and participate in games; treating him like there’s nothing wrong with him!!
And he tried, oh, how he tried!
For the love of the game; I don’t know where he summoned the strength from!
He did finish the 2007 season.


Needless to say, that since then, he hasn't played any rugby.
However, he kept training in the gym every single day.
That is his normal routine day in and day out.


There are no planned December holidays in his vocabulary.
Training always was and still is his number one priority.
That’s his life style.


According to his last cardiologist report, it is this rigid training regime that kept him alive, when his heart rate dropped so low!
(The same one who didn’t pick up anything on his ECG monitoring, multi stage treadmill tests, etc, etc, etc.)

They see this healthy young athlete and FULL STOP!! He is fine!!


Since February 14, 2008, he suffered from severe sleep apnea
and his whole situation just got worse!!!!

He was literally trying/fighting to stay alive through the night with
a heart rate dropping to 30……………….


Before his diagnoses he was prescribed sedatives and antidepressants, which he threw away. He got so agitated when nobody would listen to him or believed him. The one local physician even advised him to see a psychologist, which really got him angry!!!!!!


After wearing a Holter monitor ECG (It automatically records your heart’s activity for a 24-hour period which provides an extended look at your heart rhythms) -
Which my son insisted on!
Then only, was he diagnosed with SA Node - sick sinus syndrome - Bradycardia and not Asthma!!! They think it’s congenital/or it could have been a flu virus??

"They don't really know"!!!

My son could have died in his sleep!!


And then everything just roller coaster!!
We heard the news the Tuesday evening (2008-04-08) and on Wednesday morning (2008-04-09) he was in ICU and the implant was done on the Thursday (2008-04-10) at St. Augustine’s Hospital.

He is recuperating at home now and being a health/exercise freak/fanatic he is back in the gym, but it’s still uphill at this stage………


Now it’s over and done and we still have all these unanswered questions???

A 21 year old with a permanent pacemaker!

Any advice or input?????

HISTORICAL BACKGROUND VP

The South African mutation imported to the Cape in 1688, from Holland and is now widespread in the South African population.It is also identified in the Netherlands, where it is rare.
The South African variegate porphyria gene PPOX mutation R59W could be traced back to Gerrit Jansz van Deventer, born in Veldkamp in the Netherlands, and to his wife Ariaentje Jacobs, who was born in Rotterdam.
Gerrit Jansz (the son of Jan) came from Deventer, or rather a suburb of Deventer called Veldkamp.
He was one of the free burghers and came to the Cape in 1685. He was given a grant of land in the Stellenbosch district but he did not have a wife. He must have come from a good family because his grandfather wrote a history of the Dutch-Spanish war.
Ariaentje Jacobs (or Ariaantje Adriaansse or Ariaantje van den Berg)
*The spelling of Ariaentje varies in different documents.

Her father died when she was 5 months and her mother, when she was eight. She was admitted to the orphanage ‘Gereformeerd Burgersweeshuis’ in Rotterdam, in 1687.
The director minister Sewentien decided to send eight of his female orphans (including Ariaentje and her half-sister Willemijntje) to the Cape to become wives of the Dutch settlers.
They were sent out on the ship China and arrived in the Cape in 1688.
Four of the female orphans were married within months of their arrival and their names are together in the Cape Marriage Register.
One of the four was Ariaantje. Ariaantje (the daughter of Jacob) married Gerrit Jansz van Deventer in 1688, and they and had eight children, of whom four had porphyria. They must have inherited porphyria either from Gerrit or from Ariaantje.

Based on the fact that Hendrik, the son of the halfsister, Willemijntje, also had the porphyria mutation - the carrier was assumed to be Ariaentje.
It is not known whether porphyria was brought to South Africa by Gerrit Jansz or by his wife Ariaantje Jacobs..........................

The details about the parents and grandparents of Gerrit Jansz have been found from the archives in Holland and it would have been possible to trace the ancestry of Ariaantje, from the orphanage in Rotterdam, if only the orphanage records wasn’t destroyed by fire during the bombing of Rotterdam in 1940.
Porphyria Variegate is so ‘common’ in South Africa because one of the early settlers happened by chance to have brought the porphyric gene from Holland and descendants multiplied rapidly.
It appears that the thousands who have inherited porphyria variegate in South Africa are members of this one huge family.
Those who have inherited Variegate Porphyria seem to be more emotional than average……………
Modern medicine, BARBITURATES, SULPHONAMIDES especially and PENTOTHAL are to be absolutely AVOIDED at all costs!!!
The link with this founder family was identified first by Dr. Geoffrey Dean, a British physician who settled in South Africa in 1947. In 2003 he was honored by Queen Elizabeth II with a CBE (Commander of the British Empire) award

VARIEGATE PORPHYRIA

Por-phyr-i-a
Is a metabolic disorder. It causes overproduction of substances known as porphyrins.
In most cases the defect is genetic. The mutation carried within my family results in a faulty enzyme which cannot handle the normal metabolism of porphyrins, which results in overproduction. (large amounts of porphyrins in the blood and urine)

The name PORPHYRIA comes from the GREEK ‘porphuros’ meaning reddish-purple.

I have Variegate Porphyria (South African Porphyria).

It’s been in our family for generations. My grandmother died at the age of 26 – giving birth to her fourth child. She died of kidney failure, due to medication complications.

My Variegate Porphyria gene test confirmed a positive South African R59W gene mutation The common defect responsible for Variegate porphyria in South Africa (biochemical activity not assessed)
That means PORPHYRIC DRUG PRECAUTIONS need to be exercised.
It was done in the PORPHYRIA LABORATORY MRC/UCT LIVER RESEARCH CENTRE (University of Cape Town) by Prof Peter Meissner and Prof Richard Hift.
Prof Richard Hift is now the HOD of the School of Clinical Medicine at UKZN Medical School. They are doing brilliant work in this respect!