Just 8 months earlier her left lung collapsed and she had a drain inserted. Her doctors first broached the subject of a lung transplant then and set up a meeting with a doctor in Johannesburg for a month later. She kept the initial appointment with the specialist pulmonologist and saw him in January 2012. After consulting with him, he advised that she would most definitely be a prime candidate for a transplant.
He discussed the fact that she would have to pick up weight and also build up her muscle mass before undergoing the operation, those were his primary concerns at that stage..... and then we spoke to him about cost...... It's amazing how, before you go to see someone about something, you have all these one sided conversations in your mind and everything works out the way that you see it or envision the situation to be. So, as I said, we broached the subject of cost. We were in no way prepared for him saying that she has to be on a medical aid before they will consider it!!!!!! We thought we would fund raise and approach places like the local radio stations and the whole nation would open their hearts to our child and her need for new lungs. Medical aid did not feature in our plans at all. So you see we came away from that first meeting blocking out 'medical aid' from our minds....we were focused solely on fund raising, which actually has not been as easy as we imagined and although we have had so much support from people in the last year, it hasn't been anywhere near enough...yet!!!! We left him with no follow up appointment suggested or made so were 'in limbo' with the whole concept. In the interim NiQi continued to see her doctors in Pretoria and that was it. I always thought that doctors refer you and you continue to see the new doctor and you go from there, but in NiQi's case it didn't happen like that at all. She was referred, she saw him, he gave advise and that was it. If we somehow missed the boat along the way, we weren't made fully aware of the next step. Then July/August 2012, NiQi had such a bad set back that her doctors in Pretoria asked us how far we had gone with plans to put her on the transplant list????? (It was only then that we heard that the REAL and ONLY reason that NiQi is required to be on a medical aid is because of an executive decision made by the transplant team themselves. There is no law and no hospital policy, it is the doctors themselves....this after we had spent months writing letters to government and the Minister of Health and the presidential hotline and finding nothing in the act to say she must be on one to have the transplant.)
It was to be honest a terrible year for us in more ways than one. Johan's contract was not renewed from the end of December 2011 and as much as he tried to find new employment, he wasn't able. Everyone kept telling him what a wonderful CV he had, they were all so impressed, he was made promises, wrote aptitude tests and each time heard no more. Suddenly we were faced with NiQi's failing health and no income. I felt desperate for Johan who has always worked so hard to provide for our family, suddenly feeling so worthless. For 11 months I kept boosting his morale at every opportunity, telling him to be positive, urging him to keep on trying and listening to him and getting excited for him at any little thing that showed promise. At the same time I was trying to keep NiQi positive, helping her with exercising and physio, urging her to eat, making up her shakes, keeping an eye on her meds, nagging her, nagging her and nagging her some more. The doctors didn't know and still don't know about our financial circumstances. They didn't understand why it was so difficult for us to put NiQi onto a medical aid and couldn't see why we were stalling when they had told us how important it was for NiQi to have a transplant. I was in tears that day and pride prevented me from telling them what was happening in our lives. But that was when we decided we couldn't wait any longer, but we would do both, fund raise and put her on a medical aid. The fund raising was and is two fold, because although Johan is now working again on another contract, the money he earns is less than half what he was earning before and sadly we fail our child by not being able to afford to pay the medical aid fee every month. I am sure there are many out there who will never understand our situation, but lets face it, medical aid is a luxury these days and unless you work for a company that help with your monthly contributions, or you are earning much more than the average wage, then to find almost R4000 a month is a big deal. We have swallowed our pride and humbled ourselves and noticed the looks and the raised eyebrows and only our immediate family have known the real story. So I am telling you now in the hope that you will understand why it has taken so long to get the ball rolling....and even though NiQi is now on a medical aid, we have yet to have a month where there hasn't been a problem to sort out.
That though is only the beginning of it all....now that she is a member of a medical aid, she has to wait out a years exclusion period before she may put in any claims for anything related to her cystic fibrosis. Thank goodness we have the fund because that pays for all the extras as well as her monthly contributions. Only then may she be listed....don't think that is a given though. The doctors' decide whether she is ready or not, and only once they feel she is is will she be listed. She has to still gain weight...a battle that continues. Even with her PEG inserted, every gram that she gains, can and does get wiped away in the blink of an eye every time she picks up an infection, only to have to start all over again. She has to gain more muscle mass and there are days that she is so tired that she has to visibly force herself to do something. Nothing is easy and it takes a lot of effort on her part to do all this...I can easily eat a slab of chocolate or a piece of cake and think nothing of it, but for her to wade through a row of chocolate pieces on a slab is a huge effort. I can walk up and down, carting 50kg bags of fodder and only then get tired, but for her to even imagine walking back and forth with purpose some days is too much. NiQi, like Mark, knows how to put her best foot forward, ever cheerful and always 'good', only Johan and I are privy to what goes on behind closed doors....I think I have more photo's of her lying on the couch than doing anything anywhere else...lol
So I hope this answers some of your questions, there's just so much more I could write...but that will make a book....
sorry...this is upside down and I don't know how to turn it here!!!
another one...but you get the picture!!!!
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