NiQi's Letter to her Family

Below is a letter copied and pasted that NiQi sent to us.  I have asked her if I may share it as I feel it is something you may all be interested in.  I have to confess that reading it I had tears welling in my eyes and then falling down my cheeks.  The biggest thing, if you can call it a 'thing' for our family is obviously the fact that much of our bread and butter comes from our birds.  I said to Johan that maybe this is why God is sending Johan back to KZN at the end of this month.  It will allow him the time in the evenings and at weekends to get our bird room and aviary structures in place so that we can move the birds from here to there...that obviously will include the chickens and peafowl too.  Hopefully they will be gone by the time lungs become available and she needs to come back here post transplant and for her recuperation period.  It also means that she will never be able to visit us in our own home again - but maybe that is a good thing as we can have revenge and make her house untidy!!!!  I was surprized to read that she has tested for type A blood group as all her life we have believed her to be O positive....at least now we know for sure. Enjoy the read...


My loving family

As you know, I am in Milpark for my 2week IV course, but at the same time I am having a transplant work up done. 

Since 2012, we have all known that this is something that I need, but the reality of it hasn't hit us yet. This lung transplant doesn't just involve me, it involves all of you too. We have all known the basics of what happens with this procedure, and not until today, has it actually hit me. The transplant co-ordinator came and spoke to me today. I am not going to lie to you, as much as I want this transplant, I also don't want it. It is scary, but nothing will stop me from going through with it. 

The cost all in all at the moment is just under R1.5 Million for the transplant.

Basically, the medical aid covers about 95% of the surgery, but there will be some extra costs attached (hence the Trust Fund) for instance the medical aid will only pay the 200% of the 300% price of the surgeon etc. so there will be some costs that we will have to cover.

I have been given an 86 page book to read about the transplant process and the whole family is to read it as well to be informed. I haven't opened it as yet, as it's rather daunting. 

The stay post transplant from ICU to the isolation ward is anything between 4-6 weeks depending on how things go, the stay could be longer than that, but hopefully not.

My communication with the transplant team will now begin, I have to let them know anything that is relevant, whether it be from a change of a cellphone number or if I have the flu or if I go away anywhere. They need to know all these things to keep tabs, if and when lungs arrive.  There may also be a dry run, where I have to get to the hospital ASAP. So I must always be prepared for the calls, whether they are real or a trial run. 

There is also the possibility that when I am in ICU I can hallucinate, I will be on high doses of morphine and other drugs, and apparently hallucination is not uncommon. so just be prepared for the crazy Nicky :-) 

Talking about lungs, I am apparently blood type A . The co-ordinator said that they base lungs on blood group and height obviously. I can get donor lungs from the blood group O, but they would prefer A group. They also do not transplant HIV or high risk patients,

I am having another series of bloods taken to be tested, one of which is my white cell marker (I think) to see if my antibodies are higher or lower. The lower they are, the less chance of rejection. 

I also need to go to a dentist to have a full routine done, and have anything fixed that needs fixing, because post transplant, if I get a tooth infection, that could be very detrimental to my health, especially in the window period that my immune suppressants are very high and I have a low immune system. I have a letter from the co-ordinator for the dentist, and Discovery should cover it. 

Now, the parts that really got to me, was that under no circumstance at all am I allowed to be around BIRDS. obviously birds in the wild I can't help, but such as with us breeding and having pets, that's a NO. 

Secondly, I am not allowed to ever have Grapefruit (Not that I ever do) .

Biltong or Sushi I can have at a later stage in life, but because they are raw foods they have a high bacterial count which could cause infection. I need to have a good diet with cooked foods. Haha.

I also asked about horses, and she isn't sure, but she says definitely the first 6 months, don't go near them. Then in time I can go around them, but when grooming I am to wear a mask, and to never muck out stables. 

I am allowed to have dogs and cats, but am not allowed to be part of their hygiene, eg: cleaning the litter box etc. 

I must also try and stay away from sick people, especially in the first 6 months, so If you have the sniffles, stay away from me please :-)

Now I know that you may think it is silly, but I am hoping to get married one day.  But even if I did, I would not be allowed to have children, my own children. They are strongly against pregnancy. In most cases they have seen, rejection has happened, because your heart and lungs have to work harder when pregnant. So I am quite sad about that, but at least there is adoption. I turned out alright didn't I!!!!!   :-D 

So basically what I have to do now, is try and keep myself as healthy as possible, Go to all my check ups and take my meds and be as active as possible, without over doing myself. I have to find that balance. I think I am doing well with that, I just need to work on the exercise, especially upper body strengthening. As they say, the fitter you are, the easier the recovery will be.

Another thing, I can do gym etc post transplant, But I cannot play any physical contact sport, so no playing for the Boks unfortunately.    :-P 

Physio, post transplant is going to be quite heavy, I have to inflate the lungs on my own. For the first 3-7 days I will be on a ventilator and have 7 drains. Learning to walk and use my lungs will be a long road, but I am sure I will do fine. 

For the first week as far as I can remember I can't have family with me, You can be on the outside of the isolation cubicle but cannot physically be next to me. You will then later on be allowed in but wearing scrubs and hats and gloves and masks etc.

That is basically all at the moment, I just have to see the psychologist and I think I have then met the whole transplant team.

I am not going to lie, the deeper I get into the process the more daunting it is becoming. It is a high risk operation, but with all of you by my side, it will give me the strength. I am sure there is more to tell you but right now I am a little over whelmed and can't think of anything else.

Thank you to all of you for all that you do for me, for loving me and making me a part of your family.

I love you all dearly.

Love Nicky Naky Noodle