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Me and my CF
It’s May 2011 my big year for school applying to go to Wynberg Boys High Grade 8 next year. I was so full of life and confidence that this is where I want to go for high school, but it is all about your marks and sporting ability. Of late I was a bit down on both of this issues and did not know why. Earlier the year I had a bad cold and could just not shake it , it is like it has attached it to my lungs. August 2011 it just became too much my dad took me to Vincent Pallotti Hospital that morning coughing and coughing .
As we sat waiting for the Doctor in the emergency unit my dad joked and said Maybe they should keep you for a bit the doctor walked in and the first thing he said was… so little man how long ago were you diagnosed with Cystic Fibrosis . Me self and my dad looked at this man and thought he had lost the plot! What is he on about and is he at the right bed?
Well, off I went for x-ray’s and a CT scan it’s confirmed I have Bronchial wall thickening and damage. I was admitted and the tests started. Later the following week it was confirmed that I have CF at 14 years of age and never being sick, this was too much to process. My mom is an Infection control Sister and my dad an ex medic never saw this coming. I spent 5 weeks in Vincent Pallotti and another 2 weeks in UCT private.
They found a Tumour 7 x 11 cm on my adrenal gland and I still have it. I lost so much schoolwork and time that I just never made the mark for Wynberg Boys. I got accepted at my second choice Silvermine academy . This is my second stay in hospital January 2012 and guess what? I am missing School again but thanks to technology my classes is being attended by me using SKYPE . I hope to get out of this bed soon and to see who is in my class and what it looks like.
I am going into theatre on Thursday 17 Jan to have a port put in , cannot wait to have this done I am so sick of an IV . Well my two sisters are fine and were tested for CF and it is all clear so now I must go as it is time for a NEB and them Physiotherapy . Will keep you informed of how my port went.
Damian Wolf – firstname.lastname@example.org
A Phone Call to Mum
To the Mums & Dads – A Phone Call to Mum (written by Megan, a 39 year old CF patient)
Recently I administered some IV antibiotics through my port. After the first week the chest infection was under control, but I was feeling very fatigued and I put it down to the antibiotics. I phoned Mum. Mum, these antibiotics are making me feel sick. I really don’t think I feel like taking them anymore!
Mums reply was characteristic. And it was just what I needed to hear, which is probably why I called her in the first place. You are meant to Thank God every day for your port so that you can have your antibiotics so easily! You are meant to wake up and say I love you port, I love you antibiotics! Remember what we used to have to go through?
Yes, I do remember what we used to have to go through. And I have a feeling that parents often suffer more than their children when it comes to following medical routines. I remember the time when I used to have nightly injections, and Mum & Dad used to give me a new piece of dolls house furniture with each injection (parents – us children think that Bribery is an excellent parenting tool so do not feel guilty about resorting to it). And the days when enzymes used to be mixed up with honey so that I could swallow them. I still hate honey, but I got lots of mileage out of that episode because I needed to have lots of tasty goodies to take away the horrible enzyme taste. (Thank God and all His creation involved in the manufacture of Creon). And as for the daily procrastinating I used to put my parents through before I would consent to physiotherapy…
I decided that it was time to end the phone call…
Okay Mum, I have to go administer some IVs now. Chat later. I clicked the cell phone off. While I was sitting waiting for the IV antibiotics to finish (Dr Egner – the absolute hero in my life – said it should run over twenty minutes or so) I put my mind to good use. I am sure my husband, Terry, should be taking over from where my parents left off … maybe he can buy me some new Embroidery Supplies on his way home !!
But seriously, at 39, I know the logic behind all of these wonderful medical interventions. I want to thank my Mum & Dad as well as all the other Mums and Dads out there. Sometimes you will have to play bad cop but I promise that we really do appreciate everything you do. As a Weekend Step Mother myself (hopefully not the Wicked kind) I realise that children just do not know what they put their parents through. Please remember that deep down we really are grateful. Thank you, thank you, thank you!
I would love to hear your thoughts on the above. Feel free to correspond with me email@example.com for any CF related issues. Thanks
My Journey - Elize
I was born in 1982 and am 28 years of age, from the moment I was born my mom knew something was not right, she kept telling the Doctors there is something wrong with me, but they kept reassuring her I was fine.
It was only a few hours later when the nursing staff noticed that I was not well, my stomach was swollen and I did not want to drink from my mom, I was also incredibly quiet and did not cry once that day, not even at birth. After careful examination they realized my large intestine was blocked and I had to be rushed into A&E for an emergency operation, this went well – I have the scar till this day and carry it proudly.
I was in hospital in an incubator for 8 weeks, during which time no one was allowed to touch me unless they could do so through the gloves attached to the incubator.
CF was only diagnosed after 8 weeks, at which point it was all very strange for my family to come to terms with. I was in hospital on and off for most of my younger years, I recall turning at deaths door a few times. At one point the hospital called my parents to come and say goodbye to me as I was not going to make it. I recall my mom telling me how they all gathered around my bed and prayed for me. Someone was definitely listening, as here I am today.
The last time I was in hospital was back in 2003, when I was admitted for a chest infection. I had been to see a CF Specialist and Consultant at the CF Clinic in London, UK where I resided for the past 7 years, they monitored my ups and downs very well and took very good care of me. They saw me every month at which point they would take blood, check my weight etc all the usual things you would expect a CF patient to go through. I recall being ill at one point and not being able to leave my flat in London as I could barely walk or breathe, at which point I called my CF Advisor and someone delivered my medication to my door, this to me went over and beyond the call of duty. This is something I will never forget. The same clinic gave me a new Neb to try out and keep, a small portable one, which is new to the market, all of these kind acts have made a difference to my world and health, as I was a long way from home and they took me under their wing!
When I was about 15 years old I decided to stop drinking Creon / Enzymes as I felt I did not need them anymore, I have not had any since. I have had tests to determine if I need them and luckily they decided I am fine without as I am able to keep my weight well balanced. Other than a chest infection now and then I have not been on any constant medication for many years now. I only nebulise when I feel ill and I only take medication if needed and prescribed by my GP.
I recently decided that I wanted to see if I could go a whole 12 months without antibiotics as I feared that I was taking too many and that they had an adverse effect on me. January 2010 I passed this objective, and I felt all the better for it. But I am not ignorant either and knew if needed I would have taken antibiotics. Luckily I am ok and have only had one chest infection this year.
I am not trying to set a president here that it is ok to go without medication or to try and achiveve possibly unrealistic goals. I was only able to do the above as I believe I have a milder case of CF and I feel very blessed for this.
I know there are many CF patients out there who are very ill and I truly do wish I could pass some of my good health unto them. All I can say is hang in there, every single day we wake up is a blessing and we should appreciate every moment.
The only downfall I have suffered from my CF is that I am not able to have children, this was difficult for me to come to terms with, but in the end I thought that it must all happen for a reason and everything is the way it should be because at least I am healthy.
I hold the CF name high and try to spread the word as much as possible to make people aware, to encourage people to help where they can. To me it is not an illness to me it is a gift, one which has allowed me to see life differently and to enjoy every single moment!
If you have any questions or would like to just have a good old chat please drop me an email at firstname.lastname@example.org
A CF Journey
A CF Journey – Gail Pearson – written by Corrina, her sister
I am Corrina, the sister of Gail Pearson. Most of you know Gail. Our family has been a part of the Cystic Fibrosis Association since Gail was diagnosed with CF. My step father George Pearson was also a part of the Association for many years but he has now passed on. Gail has been healthy for many years but this year, 2010 has been a tough one for her and my family.
A while ago, we found out Gail had a very bad chest infection. From Monday the 16 May 2010 she was put on oxygen and will now be on it for the rest of her life but of course that still has not stopped her! She told her doctor listen, this time you will fix me or else!Gail has always been the strong one out of the two of us.
Sadly a lot of our CF friends has passed away and she has often said to my mom please, I don’t want to be next. Gail fights every day to stay alive, I take my hat off to her. Many people have role models like Princess Diana, Mother Teresa, The Pope and the list goes on. My role model is my baby sister Gail.
I am so proud of what she has done in her life. She is studying to be a full-on qualified Pharmacist. She has passed the first year and is currently busy with her second year. She will not let CF get the better of her or let anything stand in her way. We fight like sisters do but I love her and pray everyday that God is not ready to take his special angel. She still has a lot of work down here on earth! I do believe she can change the world. She helps others before helping herself. Pease pray for Gail because one day she will be there for you trust me, I know.
Her sister, Corrina
Eliza Wiehahn 25/06/1996 – 25/03/2009
Dit voel of ek al vir weke, nee maande hier langs my dogtertjie se bed sit en bid. Ek smeek God en maak beloftes oor hoe ek sal verander as Hy tog net my engelkind se lewe sal spaar ek voel of ek nakend voor ons Grote Vader staan en niks werk nie. Nie die medikasie nie en ook nie die gebede nie, Ag my Vader my Grote Koning wat doen ek verkeerd, Jy weet tog sy is my lewe!!!!!!
Tussen ure se gebid, teaters, naalde, drips, bloed en dokters deur vang ek myself dat ek kort kort terug flitse kry van die laaste amper dertien jaar. Ek onthou die dag toe die engelkind van my, deel van my lewe geword het, sy was seker so ses, sewe maande oud – ek onthou jy het gelyk asof jy erg ondervoed was met jou boeppens en spaghetti armpies en beentjies maar jou ogies was die mooiste mooi wat ek nog gesien het. Jy het na my gekyk met die vertroue wat net ‘n kind kan wys. Ek onthou toe ek vertel is jy het Sistiese Fibrose en ek onthou hoe ek moes leer om jou medikasie, phisio en drips by die huis te doen. En ek bid en ek gooi my self langs jou, my kind op die bed neer en ek smeek God om jou te spaar, ons is lief vir jou – gee haar terug vir ons.
Intussen hou die dokters jou in ‘n mediese koma want hulle vertel ons jy sal nie die pyn kan hanteer nie en ek, ek dink aan die dag toe jy so vier jaar oud was en my gevra het of jy uit my maag uit kom en ek jou moes vertel nee, ‘jy was te spesiaal om uit my maag te kom, Liewe Jesus het met ‘n siek babatjie in Sy hand gestaan en gewonder vir wie moet Hy haar gee en toe…… toe kies Hy my!!’ Wat ‘n wonderlike voorreg is dit nie om jou mamma te kan wees nie. Hoe gebless is ek nie.
Ek onthou hoe jy jou dokter ge-oortuig het om al sy pasiente vir ‘n hele dag te kanselleer en jou Universiteit toe te vat sodat jy met jou drip en baie swak longfunksie kan gaan atletiek hardloop om jou Provinsiale klere te kry, ek onthou hoe jy gewen het en hoe ek gehuil het want jy met jou swak longe het nou Suid-Gauteng klere vir 100m ontvang. Jy is ‘n vegter en ek weet jy gaan dit wat nou aan die gang is ook wen ek weet, want jy is ‘n engelkind met geloof wat ek wens ek kan he….
Ek huil en stig gebedsgroepe. Die hele wereld bid al saam met ons en dit voel of ek teen ‘n muur vas bid. God waar is jy? Hoor U dan nie my smagting en liefde wat ek vir die kind het nie, hoekom luister U nie? U het haar vir my gegee om groot te maak…. Jesus, my engelkind is nog nie groot nie my werk is nog nie klaar nie. Sy moet van haar longe dood gaan nie van ‘n dunderm wat gepufereer het nie. Jou longe is swak nie jou derms nie. Hoekom moes hulle 65% van jou dunderm verwyder. Ek hoor maar dit voel of die dokters van iemand anders praat, dit kan nie my kind wees nie! Hoe kan my kind gangareen in haar ingewande he? Het ons dan nie een van die beste dokters in die land gekry om vinnig binne ‘n half uur net jou blindederm te verwyder nie? As ek reg onthou was jou dokter bang dat jou longe nie die operasie sal maak nie daarom het hy die beste dokter in die land gekry om jou te opereer en nou, nou praat hulle van dood gaan as gevolg van gangareen.
En ek bid, ek smeek en onthou, onthou toe jy op die teaterbed gele het gereed vir die operasie jou laaste woorde; ‘Mammie ek is lief vir jou….maar nou gaan ek na Liewe Jesus toe’ en ek onthou hoe ek gelag het en vir jou gese het liefie ek sien jou netnou. En ek besef jy het geweet jy gaan hemel toe en ons het dit afgelag. Soos iemand in ‘n droom begin ek al wat leef en beef te bel en te vra om nie meer vir Genesing te bid nie maar dat God se wil geskied. Ek lees oor en oor jou gedigte en briefies wat jy geskryf het en let ‘n patroon op, vir die laaste 2 jaar berei jy ons reeds voor dat jy binnekort hemel toe gaan vir ons is dit net ‘n dogtertjie met ‘n hengse talent wat die mooiste gedigte skryf en goue toekennings wen as sy dit op kunste feeste voordra.
Ek hoor die dokter vir ons se ons moet groet….. jy gaan huis toe, maar ek hoor ook hoe ek op hom skreeu : ‘You are her magic man, fix her’ en ek sien hom sy kop skud en ek voel of ek besig is om te versmoor, ysige hande omklem my hart, ek haal vlak hortend asem. Ek gaan hiper-ventilleer, die knop op my maag trek al stywer saam….. vrees het heeltemal beheer van my liggaam oorgeneem en elke spier is snaarstyf gespan, want die mens wees die ma in my wil jou nie laat gaan nie.
Om 16h00 uur op die 25ste Maart 2009 presies 3 maande voor jou 13de verjaarsdag word jy dood verklaar en my lewe spat aan skerwe. Nooit ooit weer gaan ek jou laggie hoor nie, nooit ooit weer gaan ek jou hare ruik of jou arms om my voel nie. Ek gaan nie meer hoef te raas oor die koffie kolle op die kombuiskas nie…… Jy Eliza Wiehahn is huistoe.
Ek reel jou begrafnis, gaan deur die hele diens, help die mans in die familie om jou graf toe te maak en die hele tyd voel dit of ek van buite af staan en iemand anders se begrafnis bywoon, want my engelkind moet ek nog groot maak ek het God belowe ek sal!!
Duncan's CF story
My CF and Me
Hi there! It’s me, Duncan Erasmus from Langebaan, Western Cape, South Africa. I’m a 23 year old man living with Cystic fibrosis. I was like many others diagnosed at the age of three years at the Universitas Hospital in Bloemfontein, South Africa, in 1988. I immediately started off with my first batch of medicine; the enzymes that I had to take to help my tummy digest my food. As time went by I was put on more medication. I was a very healthy CF sufferer for a long time up to where I was a teenager, where the genetic disorder started its next phase. My first stay in Hospital was in 1997, waiting to turn twelve. Let me just inform you that my parents were told that I would not exceed seven years of age. >From there on it went well again for about three years when everything changed into another picture.
But the (true) story continues…
I wrote this story as my gift to all my colleagues in and around the world, especially in South Africa that’s fighting the terrible consequences of Cystic Fibrosis, a difficult gene disorder that causes a lot of problems in life including digestive problems, excessive lung problems and some mental problems.
Like all of my friends out there, I’m one of the CHOSEN ones and I live from day to day enjoying life, like most of you out there, I believe. In this story I describe myself and my daily routine as a CF sufferer and how I live life to the fullest. I especially decided to give this story to you all as part of my support and the will to survive. I hope that you will find some comfort after reading this story and maybe gain a new look at life.
Hi there everyone, it’s me again, Duncan. I don’t want to say a lot except saying that I’m feeling great! Thanks to God I have another bonus day to enjoy.
But let’s start off…
…I already told you about my first stay in hospital so I’m not going to repeat that. Let me start off by saying that from 2001 I started to get bronchitis infections very often, about once every three months where I was put on oral anti-biotics each time for a period of two to three weeks at a time. Although I was a long distance athlete at that time, my lungs started to slow down very quickly over the next 2 years. I went on like that until October 2003. I just started with my matric end exam and I’ve already finished my ‘Computer Science’ paper, when the worst accident ever happened to me.
On the morning of the 20th October 2003 I started to bleed out of my esophagus and I was rushed to ‘Red Cross Children’s Hospital in Rondebosch, Cape Town, where I was immediately put on blood transfusions and rushed to I.C.U. I thought that my liver has ruptured and that I was dying. (I was also born with cirrhosis as a complication of CF) When my doctor saw what was wrong, he told me that I’m too old to be operated on at a childrens hospital and I had to be transferred to an adult hospital. So I was immediately transferred to Grootte Schuur Hospital, also in Cape Town. I was in shock and my organs started to slow down very quickly. At the time my blood count was 5.6, if I remember correctly. But thanks to a brilliant professor (Prof. Krige), I was back at home again after about three weeks of hospital stay where I was also at the same time treated for pneumonia by another brilliant professor (Prof. Wilcox). In this period I’ve received about 17 units of blood.
So I got back home and continued with my matric exam. Although I was very confused and irritated because of my body’s response to the new blood I still got a B symbol for my mathematics and accounting papers. But on the 2nd of January 2004 around 01h00am, the same thing happened and I had to rush back to hospital again. Another six units of blood, a gastroscopy (where my professor banded the bleeding varices) and a few days in hospital later, I was back at home. Oh, I forgot to mention that the thing that’s causing this bleeding is known to me as portal hypertension. So time went by until the 5th of March 2004 where I started bleeding for another time. The same procedure followed, plus another four units of blood. In total I had 27 units of blood since my 1st bleeding episode in 2003 up to my last in 2004. Can you believe it, hey?! 27 People’s blood in my body! That’s quite a lot of personalities. HAHA! Thanks to the excellent work from my doctors I haven’t been bleeding from varices again up to date.
The year went on well until the night of 11 December 2004 when something else, that I would have never expected, happened to me. As soon as I laid down my head to sleep, I started to bleed out of my lungs. I thought I must get myself ready for heaven. I could feel and I saw myself drowning in my own blood. In a period of about half an hour I guess, I coughed up about 3 cups of blood (about 500ml). It was EVERYWHERE! The bath looked like it was painted red. Luckily as quickly as it started, just as quickly it stopped. My parents were about 3 hour’s drive away from where I was because they went on holiday for the festive season. So they had to rush back home by midnight to pick me up and take me to the 2 Military hospital in Cape Town so that I could get admitted for a 3 week stay with intravenous antibiotics. There I found out that I have another complication from cystic fibrosis called Bronchiectasis. From here on it was back to hospital every 3 month for the same thing.
It is now in the beginning of December 2008 and I’m coping well, thanks to my psychologist that is helping me through my anxiety and mental problems. But 2008 was no sunshine year also. From January till July I was admitted another 4 times for pneumonia infections and bleeding. I am happy to say that I wasn’t admitted to hospital again since July 2008. (4 months!) I am so thankful to have such great doctors that started me with a new excellent medication in July to help me stay out of hospital for longer.
So, this is my story so far and I promise I will stay in contact with as many CF sufferers as I can meet. Just in case you’re interested, here is a list of all my medication that I’m taking on a daily basis:
• Creon (Enzymes for my pancreas to help with food digestion, especially fatty foods)
• Ursotan (For my liver)
• Losec (For my portal hypertension)
• Multi Vitamins (For immunity)
• Vitamin B Complex (For my diabetes)
• Zithromax (For keeping infection away)
• Colistin Nebs (For fighting infection)
• Pulmozyme Nebs (For thinning the phlegm in my lungs)
• Actraphane insulin (For my diabetes)
• Zolpidem (For anxiety at night)
• Citalopram (For depression and anxiety)
For any information about me you can Email me email@example.com
You are also welcome to visit me on Facebook. (Just search for Duncan Erasmus, South Africa, Western Cape)
Personal Story - Peter Leid
My name is Peter Leid. I am fifty one years of age and I have Cystic Fibrosis. Diagnosed at six months – my Mum didn’t think I needed to know and brought me up “normal” strictly applying the paediatrician’s recipe:
FORCED IF NECCESSARY!
Twelve months ago I received a bi-lateral lung transplant. That’s right both lungs were replaced. The operation is only performed in Johannesburg @ Mill Park Hospital. Not because there are no surgeons in Cape Town able to perform this operation, but because there is only one doctor in the country who can (is prepared) to take proper care of you after the transplant. For those aspiring doctors reading this, that should sound like an opportunity??
When I received “the call” telling me a donor had been found and that I needed to be at Mill Park that afternoon………. I have never been so excited in my whole life!! Friends and family have all asked me: ”weren’t you scared?” No, I wasn’t ever scared, was my shoot from the hip macho answer, but during quiet prayer with Jesus there was a different truth. This Psalm might tell you how I really felt at the time.
Psalm 51:17. “The sacrifices of God are a broken spirit, A broken and a contrite heart; These, oh God, You will not despise.”
I was in such bad shape by February of 2008 that I saw my 50/50 chance of surviving the operation as a blessing compared to 100% chance of dying by March/April. If things went well – I’d be coming back to my family in Cape Town If they didn’t, I’d be going home. Either way, the operation was going to be an adventure and I knew that whatever Jesus wanted for me, was what was going to happen and that was good enough for me.
Job 13:15. “Though He slay me, yet will I trust Him”
John 15:16. “You did not choose Me, but I chose you…”
When I reflect back over the past twelve months………
I don’t think it’s possible for a person to go down this transplant path without faith.
Hebrew 11:1. “Now faith is the substance of things hoped for, the evidence of things not seen” I’ve been told by many that they admire my courage for having had the guts to go through with this operation. I’ve done a stack of crazy things in my life, but I’ve never looked back and thought; – “Wow that was courageous”. From my perspective Courage and Faith are two sides of the same coin, they are indistinguishable. I don’t believe there can be courage without faith.
To go ahead and do something that every cell in your body screams out; NO!! DON’T DO THIS!! Isn’t courage or bravery, it’s more like some kind of brain damage. BUT when you can quietly and honestly go ahead and do this ”crazy thing”. Cool and calm with a genuine faith that you will be OK, because you have God’s Word that you will be OK is Faith. We know this to be true thanks to scriptures like:
Proverbs 18:10. “The name of the LORD is a strong tower; the righteous run to it and are safe”
Jeremiah 33:3. “Call to Me, and I will answer you….”
And while you take the “Road Less Travelled” (three people in my case) and you know that the only reason you are alive is because Jesus wants’ it that way……….. it’s thank you time, all the time.
Thessalonians 5:17. “Pray without ceasing.”
Psalm 34:1. “I will bless the LORD at all times; His praise shall continually be in my mouth.”
And especially for “old” guys like me:
Psalm 92:14. “They shall bear fruit in old age; They shall be fresh and flourishing.”
My Thank you starts with the Lord’s support crew:
Thank you to Joe Grobbelaar for looking after me pre transplant for thirty years.
Thank you to Cindy Tyrrell and Ashraf Natha for “beating me” relentlessly pre transplant.
Thank you Cedar Ward at Vincent Pallotti Hospital for taking great care of me, especially during 2007/8 when my old lungs literally gave up.
Thank you to Tamara Govender for “the call” on February 20th 2008.
Thank you Pick ‘N’ Pay for flying my transplant team to East London and back so they could harvest my lungs.
Thank you to my donor and her family for their Gift of all Gifts.
Hebrews 13:2. “Do not forget to entertain strangers, for by so doing some have entertained Angels.”
John 15:13. “Greater love has no one than this, than to lay down one’s life for his friends.”
Organ Donors Gift their life giving organs to strangers!!
Thank you Netcare Group, Mill Park Hospital. That this facility is part of God’s Surgical Ministry in South Africa, offering people like me Lung Transplantation.
Thank you to Greg Hammond and Martin Sussman for saving my life surgically.
Thank you to Paul Williams for pulling me through and keeping me alive.
Thank you to Aviva Smulwitz for being the ONLY physiotherapist I ever had that I was too scared to say NO to.
Thank you to Ronelle de Lange for the most memorable day of my post transplant life – 75% function on day 14!!!
Thank you to Alice Vosloo for being my post transplant milestone maker – go to:
Thank you to Discovery Health for paying the huge bills.
Thank you to my Employers, Bayer Healthcare for their unwavering support these past twelve months.
Thank you to The Organ Donor Foundation of South Africa for facilitating the entire exercise.
Thanks to my wife and best friend Gail, for standing by me through a fiercely traumatic year (2008).Proverbs 18:22. “He who finds a wife finds a good thing, and obtains favour from the LORD.”
Thank you to my Family and Friends who prayed for me unceasingly over the past twelve months.
Thank you to Peggy Klopper and her Family for taking me into her home and looking after me until I was well enough to come home to Cape Town.
John 13:35. “By this all will know that you are My disciples, if you have love for one another.”
Thank you Lord Jesus, for answering my prayers and for giving me a second chance at this life.
Isaiah 59:1. “Behold, the Lord’s hand is not shortened, that it cannot save; nor His ear heavy, that It cannot hear.”
John 14:14,15. “If you ask anything in My name, I will do it. If you love Me, keep My commandments.”
So now on the cusp of being one year post transplant and fifty two years young I have my life back. Not just back, but better than ever – really, read my lips “BETTER THAN EVER!” Now I can:
Suck in a chestFULL of clean fresh air, on top of Table Mountain without coughing my insides outside.
Walk up stairs without fear.
Take a shower without getting exhausted.
Talk with friends without running out of breath.
Play Squash with my son Fraser (15).
Play Tennis with my wife Gail.
Play Golf with my brother Kenneth.
Walk my dogs Bess & Bella.
Work out at the Gym.
Ride my mountain bike.
SHOUT OUT LOUD EVERY MORNING:
“THIS IS THE DAY THE LORD HAS MADE, LET US REJOICE AND BE GLAD IN IT!!”
LIFE IS GREAT – BECOME AN ORGAN DONOR
IF YOU HAVE CF – GET ON THE LUNG TRANSPLANT LIST
If you think I can help you or perhaps your child with CF, just call me or write to me on:
mobile: 082 570 6802
Personal Story by Carol Bryant
SURFING THE WAVES OF LIFE – WITH A PURPOSE
Have you every sat on the beach, or in a high rise building, and watched the waves as they roll in and break on the beach, or further out to sea. Some humongous and frightening in size and challenge, and others small enough to ride with caution, but still have fun.
I’m not a surfer, but if you’ve ever watched surfers go out to “catch” the waves, you’ll notice they go out there with a purpose, not just to drift in the calm waters, but to challenge the big waves with respect and endurance, and then enjoy the exhilaration of their success.
The pattern of our every day lives is very similar, with highs, lows, and sometimes even breaking through to calm waters. All measured by the way in which we live our lives. The choices we make, the things we say and do, the way we react or deal with different situations and circumstances.
I would like to share some of the waves in my life, and how by the grace of God, I have managed to ride them, and find purpose.
I was born and raised in the good old southern suburbs of Johannesburg. Blessed with wonderful parents and family. I was however ill from the day I was born, and eventually at the age of two, I was diagnosed with the disorder which was then known as Fibrocystic disease of the Pancreas – now more commonly known as Cystic Fibrosis.
Basically, C.F. is a genetically inherited disorder, affecting mainly the pancreas /digestive system, lungs and sweat glands. Usually diagnosed in infancy, it is life threatening, and to date there is not cure. Many children diagnosed with CF do not reach adulthood. My parents were told my prognosis was “uncertain”
Now at age 49, and some change, I am believed to be ONE, of the oldest surviving patients still living with the disorder in S.A. Whilst this by no means makes me special, it does highlight just how blessed I am, and how much I have to be thankful for.
Having said that, it has not been an easy journey, and my life has been a series of highs and lows health wise, and more so, as an adult.
I have been in and out of hospitals, more times that I care to remember. In fact I should have shares in Entabeni and Westville Hospitals by now, so next time you go there, mention my name, you may get a good bed.
I am on first name terms with many Drs. and nurses at both hospitals. At this point I usually insert my own IV lines, administer my own meds, and monitor my diabetes, during hospital admissions.
Living with CF can be, emotionally, physically and financially draining
– On going infections weaken immune system and resistance, resulting in low energy levels
– Medical Bills even with Medical Aid – well I won’t even go there.
– Treatment is both costly and time consuming
– R12000 to R15000 p/m, p/patient (conservative estimate)
– Daily physio, nebulising, breathing on a daily basis.
At this point in my life, no two days are the same. Some days I can spring out of bed and be full of the joys of life, other days, I can hardly get out of bed, but it is on those days that I make sure I do.
I choose not to dwell on the negatives. God never promised us a problem free life. We all have a cross to bear, mine just happens to be CF. CF however is not the be all and end all of my life. I prefer to see it as a means to learn, grow and help others. THEREIN LIES PART OF MY PURPOSE!
I truly believe that it was part of God’s plan for my life, although it took me too many years to realize it. Before I did, I thought I could do it on my own. WOW! Was I wrong.
Reading “Purpose Driven Life” by Rick Warren, confirms so clearly that God has a special purpose for each of our lives. We just have to be open to recognize and make the best of it.
In 1985, I was offered a transfer from JHB to Durban. I was working as a sales rep at the time, and gladly accepted the opportunity. I was in an unhealthy relationship, and, I was in total denial of C.F.
Little did I realize, that by accepting the transfer, my next blessing was staring me in the face. About a year or so after moving to Durban, I moved into a commune. There I met my knight in shining armour, and now, my husband and best friend Mark. I was also blessed with an amazing extended family of in-laws.
Our love for each other, and decision to marry, were unquestionable, but we still had to deal with the reality, the facts on hand, bearing in mind that at this point we were still trying to do things in our own strength.
– probability of shortened life span
– possibility of no children of our own – we both love children
– financial impact
– the fact that CF is not an individual journey, but very much shared.
By the grace of God, and against all odds, we were married on June 1st 1990. A truly memorable occasion.
Two and a bit years later, we were further blessed with a little boy to raise as our own. A little boy who at 2 yrs, 8 months, came along with his own set of challenges. It was through Josh, now 18, that Mark and I found our way back to God, and for the right reasons. In hindsight, I believe it was God’s way of saying – it was about time.
God has thrown many a curved ball at us over the years, C.F. and other, but He has also always been there for us when we have fallen short of figuring them out.
Living with a disorder, and a child with special needs is challenging, and definitely builds character.
Part of that character building, is to be able to laugh, to see the funny side of difficult situations.
Mark one Sunday was reading the papers, when he noticed an advert for a dog. We were keen on getting a dog, so he phoned. The owners were re-locating. The lady explained that whoever took the dog, needed to understand that it had a pancreas problem. “No problem” said Mark, so does my wife, they can share medication”
Acceptance and knowledge help to understand and deal with the difficulties of C.F. I have tried wherever possible to keep up to date with medical advances. I am also actively involved in both the KZN and S.A. Associations.
A few years ago, I decided to put my knowledge in writing, and what started out as a therapeutic exercise, turned into what I call my “God Inspired book”. Three weeks before going to print, I had no title, no ending and no funds. I prayed about this “book” and before I knew it, I had a title, I had an ending, and what’s more, I had a sponsor.
My book – “Behind the Smiles” Our journey through life with Cystic Fibrosis has sold many more copies than anticipated. The glory however is not in the number of copies sold, but in the amazing people I have met along the way. Many of who, have influenced my life. As a result of my book, I have been able to fulfill a part of my dream, .. to become a Motivational/Inspirational speaker. This came about as a result of my being “re-trenched” on medical grounds, after holding the position of Regional Branch Manager for a Top Brand Hardware Manufacturer, for 12 years.
Support is imperative, and I am blessed with support in abundance, in my life with C.F., and in general.
Living with CF has enriched my life. It has opened doors of opportunity, built true friendships, boosted my confidence, memorable travel journeys, ability to council others in need, respect life and be humble, but more importantly, by God’s grace I have found Purpose in my life.
I give thanks daily, on the good days and the not so good.
God and I have a great relationship. Because he made me human, I do get anxious, frustrated, even scared sometimes, and I let him know too, but I can honestly say that I have never been angry, at having CF.
God has spared me for many extra years, and given me a great life. A Life with a Purpose.
Reality tells me that my health is and will continue to deteriorate, and I accept that, but it does not mean I’m ready to give up. In fact, I have my foot firmly on the brakes, but I am also not afraid to die. I know that when my times comes, I will be with God, and He with me. Until then, I will continue to surf the waves.
At the end of the day, in the big sea of life, C.F. is a small wave to those who don’t know any better, and a big wave to those of us who do.
MY PRAYER FOR EACH AND EVERYONE READING MY TESTIMONY,,IS THAT YOU SURF THE BIG WAVES WITH ALL YOUR MIGHT, AND ENJOY THE CALMNESS OF THE SMALLER ONES, AND FIND PURPOSE IN ALL.
My motto, you may want to share:
Learn and grow from yesterday, live, love, laugh and be thankful for today, plan for tomorrow, but never take it for granted.
Personal Story by Grant Desmond
Hi, my name is Grant Desmond. I was born with an obstruction and when I was only one day old, I had to have major surgery – this is when I was diagnosed with Cystic Fibrosis. My parents were told that I probably would not survive and should I do so, the average life expectancy of a CF patient was only 12 years! My mom made sure that doctors and staff worked around the clock as she was not planning to leave the hospital without me. That was 29 years ago. CF is not just a “condition” you are born with – it is a way of life.
When I was a child my mom was responsible for the management of my health and made sure my nebulising and physio was done in the mornings with a second round of nebulising and PEP mask breathing at night. As I got older the PEP mask breathing was replaced with The Flutter. As a family we had a well balanced and healthy diet and I had all the necessary vitamin supplements which goes hand in hand with CF. It was absolutely ingrained in me to follow the daily routine of my health care regime.
After I matriculated I was fortunate enough to get a job in a video shop which enabled me to study through UNISA. Once I graduated with a B-Com degree, I was employed by an accounting company and currently work there as the office manager.
Three years ago I went on an overseas holiday and became really ill. On my return I discovered that the infection had lead to pneumonia. As a result, when I recovered, I took up cycling to get fit. Some close friends of mine rode with me and we entered the Amashova race in 2006…The Amashova is 108km long and we finished it! What an achievement! In 2007 we entered again but one of our healthy riders held us back and we unfortunately did not complete the race. We are hoping to enter again in 2009…watch this space!
I now live on my own (closer to work) and completely manage my own health.
My faith in God, a healthy lifestyle and my positive mindset carries me forward every day. What I have learnt from CF is that what you put into life is what you get out – CF is no exception.
Personal Story by Clare Dunn
“Having CF is just the same as living life to the full…never knowing what’s going to happen but taking every opportunity available”.
I was born on the 13 March 1987. The doctors immediately saw that there was something wrong – I had this distended stomach and I was crying and crying. They rushed me off to another hospital and performed emergency surgery. That was the start of Cystic Fibrosis for my family. They were so worried and they kept on asking “What is Cystic Fibrosis??” Some very “well informed” people told my mom to take me home and treasure every second because I was probably not going to live past the age of 4. After that my parents were bombarded with information, some of it was terrible and extremely inaccurate. Some of it gave them hope.
When I was about 4 years old my mom came across an article about a lady with CF who was actually a granny! This woman was a healthy 65 year old who did lots of exercise and never neglected her treatment. My mom was so shocked after all the bad things she’d heard that she decided from that moment on that she would ignore all the bad and focus on the good. She found a ballet teacher for me and her and my dad made sure that I did my physio correctly – every day. Every day when my mom dropped me off at school, she would say : “Remember the rules? Don’t go near things with germs, stay away from coughs and take your enzymes! Have a nice day!” Those were the rules I lived by. At Nursery School I was responsible for taking my medicine on my own, I had to watch out for things that could harm me or “give me germs”, things that other children didn’t have to worry about. But as a result I am very responsible when it comes to my health today.
As a child growing up no one knew I had Cystic Fibrosis, purely because it never came up in conversation. People often asked why I always took tablets with my food, so I would try to explain all “7 years of me” and they wouldn’t really understand and we’d carry on playing games or whatever we were doing. I remember once in about grade 6, a friend of mine asked me for a tic tac. I said to him “I haven’t got any, what are you on about?” and he pointed to my enzyme capsules. I laughed so loud! The whole time he thought I was being stingy with my sweets when they were actually my enzymes.
As I’ve gotten older, things have seemed to stay the same. I don’t feel like there’s anything “wrong” with me. The two times that I was admitted to hospital for an IV I was already out of High School and it wasn’t really a big deal.
My parents’ overall attitude towards CF has always been very positive and as a result so is my attitude. I live each day to the full and try my best to keep healthy. There are always those people who come along who don’t understand. Friends at school who tried to get me to smoke, or people who said “man who cares if you miss your physio once – just come party!”. Luckily I’m a strong person who “sticks to my guns”. I love going out but if it’s too smokey inside I just go outside with a friend for a few minutes to get some fresh air. Luckily I’ve got such wonderful support from friends and family that they actually remind me to take my enzymes or my antibiotic or they will get me an extra jersey if it’s cold.
For me, CF has been a blessing. It may sound strange but in a way it’s made me feel special. It’s given me an attitude towards life that is positive and always looking for fun. With fun there’s always a sense of responsibility which always makes me the “designated driver” when we go out.
At the beginning of the year my mom and I were in quite a serious car accident. I had a lot of abdominal trauma from where the seat belt locked and injured my stomach. I was in ICU for about a week. The positive attitude really came into play there. I thought to myself “I didn’t fight CF all these years to just lie in this bed!” They wouldn’t let me walk to the bathroom and wanted me to stay in bed but I told them that I was getting up and walking around because I wasn’t going to lie there and mope. I tried to keep everything positive and passed by that experience with lots of lessons learnt and a new respect for my life. I think all of us can do anything we set our minds to!
I am where I am today because of my wonderful parents who always do so much for me! And because of my faith in God and my zest for life. I keep telling my Dr Cathy Biard that I’m going to try to break the record as the oldest living person with CF. It’s just a light hearted joke but I really believe that if I focus on all the right things I can live a “normal”, fun, happy life – just like everyone else.
Personal Story by Alice Vosloo
My name is Alice Vosloo, and I’m 24 years old. I was diagnosed with CF at age 2, and had my first serious lung infection at age 6. However I had a relatively normal and ‘healthy’ childhood. I did culture Burkholderia Cepacia (spelling) once when I was about 11 years old, but thankfully I got rid of it after 2 weeks of IV’s and lots of prayer. For the rest Staph was always my friend and I only needed IV’s every 2 years or so. Like most teens with Cf I tried to hide my disease as much as possible, and did all the things the other kids did, as far as possible (including not always nebulising… and often paying for it later).
I first read about lung transplant in 2003 through a CF forum/newsgroup on the internet called Cystic-l. At that time I had no idea if they even do them in SA, and in any case, I was of the opinion that should I EVER need one, it would be in at least 10-15 years or so… the famous CF-denial syndrome…
In January of 2006 I went to Cape Town to visit friends, and upon returning my chest felt tighter than usual. I ignored it for a while, and then went to see my pulmonologist. After various oral antibiotics and sputum test it was clear that I had the dreaded Pseudomonas, that I’ve managed to avoid for so long… IV’s didn’t kill it off, and at the same time became a regular occurrence. The resistance to antibiotics also increased drastically In October of 2006 I realised that I might have to pursue this lung transplant thing (still thinking it’s about 10 years away though…) I asked my Drs (Paul Gebers and Luke Krige) about it, and got referred to Paul Williams in Joburg…
After a serious wake-up call and immediate work-up for transplant, I got listed for a bi-lateral transplant in May of 2007. I was also diagnosed with CF related diabetes at this point, for which I take insulin now. Waiting became my life, esp. as I got more reliant on supplemental oxygen. Not a very pleasant place to be, but hope is a lot better than the alternative. I got THE call after 8 months of being listed, and it rocked my world. The transplant was a massive success, and even though I still take loads of meds, it’s just a bunch of pills… no comparison to hours and hours of nebs and physio and coughing yourself into a semi-comatose state! It’s been 10 months with my new lungs now, and I have had no rejection, gained 10 kilo’s, working full-time, exercising, and most of all, having lots of fun.
I would definitely advise CF’ers in SA to talk about transplant with your Dr, and to contact me should you want to know more. Even if you’re far from reaching that stage, and they may find a cure before you get to that point, it is always good to know what your options are and to prepare for them. Especially where medical aid is concerned. For more info e-mail me at firstname.lastname@example.org.
My web address :