I began this blog to raise awareness of Cystic Fibrosis, and Organ Donation. Although 1 in 25 people in the U.K carry the CF gene mutation (unknowingly usually, as carriers are healthy) only 1 in 2500 babies born have CF, and this amounts to around ten thousand people in the U.K. The most common, genetic, life threatening disease is still pretty rare. And increased awareness really does help, not only in raising more funds for research, but also to dispel myths, and reduce the number of crazy questions sufferers deal with. The organ donation part is linked as people with CF make up a large proportion of people on the waiting list for organs. The chances are, at some point, Isaac's lung health will be so low, transplantation will be his best option. Although this does mean swapping one disease, for another in a way (a lifetime of suppressed immune system and other drugs, along with their own special side effects). Currently half of those people on the waiting list for new lungs die waiting.
The one thing I never wanted this blog to be about was pity, or to attract sympathy. I really hope that it comes across in the way I intend - to share, inform and give a glimpse into family life affected by a serious genetic disease, in a positive way, while still being very real. One thing to emphasise is that the treatment regime for CF is to treat infections very aggressively. This is why Isaac takes daily antibiotics, and occasionally has these courses of high dose (treatment doses in CF are much higher than for other people) IV antibiotics, which kick some serious bug butt. So whilst the treatments sound, and really are, pretty full on, this is all aimed at keeping him well, rather than because he is currently very un-well. As I am often told, you'd never know Isaac has CF to look at him.
We talk very openly at home about CF, we never wanted to make Isaac feel it was something he should be secretive about, and he knows he can ask us anything freely, and without worrying about upsetting us. Anouk and Rosa talk quite proudly about their brothers CF, and that he has medicines into the 'wiggly' in his arm. They all understand that the many treatments that Isaac does, very much part of our everyday life, are doing just that; keeping him well, as such, we never refer to CF as being a sickness (although you will regularly find us all agreeing; CF sucks!).
Some observations about home IV's;
We very much prefer home IV's to staying in hospital (this study supports the idea too). It is no doubt easier for our family as a whole, and protects Isaac from the risk of picking up extra bugs in hospital. And whilst the physiotherapists do an amazing job, trying to increase his exercise and clear his chest, we can do more at home. He can't swim or do contact sports with a line in, but he can do most other things.
If we do this more often (many kids with CF have regular courses of IV's every 12 weeks, rather than adhoc as Isaac does, maybe one or two times a year) we will need another blue bin. The amount of discarded packaging is immense!
I am happy and willing to mix up and administer the IV drugs at home, which enable Isaac to spend less time in hospital. That said, I would be lying if I said it was easy, and I always felt relaxed doing it. Mixing up the drugs to give him includes many vials of drugs, various mixers, sterile wipes, needles, bungs, syringes, and making sure various parts don't ever make contact with other parts.... in hospital each dose drawn up by one nurse has to be checked and signed off by another; the patient, the dose, the use-by dates, whereas at home it's just me (thankfully with just a single patient mind). After all, I am pushing these powerful drugs up a line directly into his bloodstream. Problems can include spontaneous anaphylaxis, infection and the vein popping and the drugs going into his tissue instead of his blood. Scary stuff.
My son is amazing.
And so, we have come to the end of yet another course of IV's (have lost count how many he has had now), feeling pretty lucky. A single long-line, which came out today, has lasted the whole time; He's had very few side effects; We got to spend half the time at home, rather than the full two weeks in hospital; and most of all, he is feeling better. Plus I am the reigning queen of our new card game, Exploding Kittens.
Huge thank you's to our parents for all their help, our visitors in hospital, Dan for surviving the long weekend on the ward while I got to spend some much needed time with our girls, and for all your lovely comments on FB. Isaac 1 - 0 CF x
