Never Think You Are Alone

A couple of days ago  I read a post on Facebook that brought a lump to my throat and a tear to my eye.  You know that feeling when you can actually see yourself walking in their shoes, either because you have already walked that road before or because you know you still have to walk it.  For me it was because I know I still have to walk it and the unknown can at times be pretty scary.

This was the post that I read, and to protect the family involved for their own privacy I have blocked any names mentioned...

This is an exceptional case where convalescence is taking longer than the norm, but as NiQi's doctor has told us, each patient presents as an individual and no two are the same.  The transplant team are learning with each transplant operation and nothing is predictable.  Some bounce back only days after such a major operation and others take so much longer.  No patient can compare themselves with someone else because they are not that person and it is not their body.

Since NiQi's year of exclusion from claiming on her medical aid ended at the end of June last year, we are following the processes and living from day to day.  She has been blessed with the way her health improved for a time, but we know that she cannot continue as she is forever.  In recent months we have noted the use of oxygen more frequently, the loss of energy, the coughing fits, the shortness of breath, the tiredness creeping on and we know that if she wants the life she desires, then a transplant is her only option.  

I have read many posts and blogs and media stories of transplant patients and realize I may think that I know what NiQi is going to go through, but in reality we won't know until it happens.  So reading the post above made me aware more than ever that we have to be emotionally prepared for anything.   The one thing I know that we will able to count on is the love and support of family and friends...just knowing that they stand behind NiQi makes what she goes through on a daily basis all the more bearable.

Sacrifice Is Not Easy....But Necessary

I imagine that only those families who have gone through the process of waiting for a transplant will understand this post but I hope that if you read this you may try to understand.

As you know by now, NiQi, who was born with cystic fibrosis has reached the stage of lung transplant. Having watched her health progress over the years to how she is today, it has been a continuous roller coaster. She stays well for a while, gets sick, goes to hospital, feels better, gets sick and so it goes on. The years of 'wellness' with time became shortened to months in recent years until now we are talking literally a week or two before she starts up again, riding it out until she can have IV's again.

When Mark was still alive we watched the progression come upon us so much quicker until there was a time that his paediatrician told us there was no more they could do for him. Back in 1994/5 lung transplants were still very new and the success rate was very slim so it was that Johan and I decided we did not want him to suffer  any more than he had or was already and the disease took his frail little body at age 9 years.

It is now 20 years later and some years back when NiQi was still a minor and we had very little knowledge of the progression made in the medical field of lung transplants, we would possibly have made the same decision for her as we did for Mark. The decision now though is not ours to make, as NiQi is an adult and well capable of deciding for herself.

I understand fully her desire to have a transplant as she imagines and envisions a life so much better than she has now. Quite selfishly too I picture my life with her being around for so many more years and if she can gain from a transplant then we are 100% behind her.

What we, and I am sure you didn't know is that to get there we have to make certain lifestyle changes. There is a list of 'NO's' that have to be adhered to post transplant, all of which affect NiQi herself  and a few which affect us. For example NiQi may not eat sushi nor biltong, both of which are raw foods and totally forbidden because of it. She may also not eat grapefruit....and she may not be around chickens nor other birds...although birds in the wild do not count I believe and even though we were told this as far back as September it does have an impact on our family. Johan emailed a doctor friend of his to get his opinion and he did confirm this as fact but when birds have been a part of your life as long as they have been a part of Johan's, it is a hard pill to swallow. Questions come to mind in argument of the logistics of keeping them or of being in the vicinity of them. It is understandable that you should not keep them as pets in your home or visit friends or family with the same, BUT, if you live in a town house and a neighbour moves in next door and builds an aviary for homing pigeons or budgies or parrots of some type...would that require you to move home? Say it should happen again some time in the future, would you once more be on the move?  What do those who live in Australia do when flocks of cockatoos reside in your garden and make themselves at home?  This is the enquiring mind of a bird keeper and full time bird lover.  When we visited the transplant team psychologist, this was a question posed to her. Her answer before hearing Johan out, was to get rid of the birds but a further question of whether there may be a suitable distance between the birds and our home was quite complex for her to answer. Living in a semi rural area where the birds can be housed some 800m from the house could in effect be construed as having 'birds in the wild'....we await her answer in anticipation as she promised to ask the surgeon and pulmonologist who is NiQi's case doctor.

In the meantime, we have made a huge decision already while we wait....with our imminent move back 'home', we are going to get rid of all the birds except the budgies. For now we will hold on to them and Johan will build a new bird room at the furthest section of the smallholding, which will be totally enclosed and fitted with extractor fans, air con etc.  When the transplant takes place, if push comes to shove, and it is a definite 'no' then Johan will get rid of the budgies too. No sacrifice is too big or small to preserve the life of our daughter....our precious gift from God.