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Monday, October 19, 2015

Low weight = Low BMI = NO TRANSPLANT!

On the 11 November 2015 I will have been on the transplant list for a year. A whole year has gone by, and to think that when the transplant panel first discussed my case, they thought that it was too early for me to be listed, because I still have a good quality of life. It just goes to show you how things can change.

It is now that time of year, where the panel have a sit down , and reassess me, and decide to transplant or not. 

When I was first listed, my Lung function was sitting at about 34% and my weight was sitting at around about 59 kgs. 

A year later, I am sitting with a lung function of 26% and weight of 54.1 kgs. As difficult as it is to say this, my body is deteriorating slowly. It is only inevitable.

My BMI, for transplant needs to be atleast 20. When I was admitted it was sitting at 17. So, Low weight = Low BMI =  NO TRANSPLANT!...

I remember the Psychologist saying to me that, at some point in my life, my body is just not going to allow me to do things anymore. It will not be able to do what my mind tells it to do. It becomes a foreign body. And I have slowly been experiencing those frustrations. I do still tell, and think to myself that I am still doing very well. I am coping. Maybe it is just denial, or the fact that my body has adjusted to my limitations. 

No matter what happens though, I will always try my best to keep myself going for as long as possible.

One day, my new lungs will arrive,. and I have to be ready for them. It is only fair to myself, and all the people that care about me to do the best I can.

I am currently in hospital, I have been in for 5 days. I would generally be going home after 7 days, and then I would finish the next 7 days treatment at home. But my Doctor feels that I need to stay in the full 2 weeks so that I can be at optimal status again. 

I am now on day 5 Colistin Iv and nebs, and day 3 Maxipime Ivs.

I have also been given the HPV Vaccine against cervical cancer. I spoke to my doctor and it is on the state vaccine sheet. So it is almost mandatory for those from the age of 16. You obviously can choose whether to have it or not. In my case I needed to,because post transplant you can't vaccinate, and also post transplant patients have a higher risk for cancers.

Since arriving I have picked up almost 3 kgs. I am on steroids however, as I had an allergic reaction to Taziject, the first antibiotic I was on. And as most may know, cortisone makes you as hungry as anything and also that you retain water. So I could just be cortisone weight. However, I am hoping that it is not so. I am doing PEG feeds every night, along with drinking atleast 1-2 Skandishakes a day.

My doctor said to me that I must eat when I am at home, and I told him that I do. The reason I pick up weight so easily in hospital is because I am literally sitting around all day, stuffing my face full. When I am at home, I have a life, I work, I am active. I don't just sit around all day consuming and storing calories. Haha.

Anyways, we will see how things go.

Thank you for all the love and support 
<3 <3 <3 <3 

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