I know this was posted a long time ago, but as soon as I read this my heart went out to you. I can understand exactly where you are coming from, and actually how your son must be feeling as I myself have had this for 4 years now. I am 21 and was given the news at 17. I wasn't too sure whether to take the treatment. I was sat down and told how hard the regime is and how much effort I would need to put in. I have never been shy on drug treatment; actually I would say I have been pro treatment all my life. My Doctor said to me at the time that it was my choice in the matter and that it was not effecting me horrifically so I had time to wait. I waited a few months then decided I would opt to treat. I was nearing 18, I'm 5ft and nearing 9 stone in weight at this point. My lung functions were dropping, but I thought my body was very strong and I would defo be able to take this. Plus the news regarding the lung transplantation option was truly devastating to me. That is right from the heart. I have always believed I may get a second chance at life and never wanted that life line taken from me.
I started the treatment at 18 and just like your son, deferred uni for a year. I knew I needed the focus here; and I was unfortunately so right. For me the Myco has been very persistent in my health and has really stripped me from my former self. Four years of treatment and I have not budged the cultures one little bit. It takes time but the differences for me are very apparent now. I am coming up for 22 and am weighing 6 stone 12 and my lung functions are 40s/50s on a good admission. The drugs are very potent to my body and everytime I go on Ivs I am doped on cyclizine intra venously as I am just sick constantly. I am on meropenem, amikacin and tigecycline when on Ivs. They are brutal but do clear me up for some amount of time. I have these every 2/3 months.
All I will say is your son is very lucky that he has such a loving mother who will give him all the love and support he needs. As he may not show it, but for some of us, It really is a struggle. I sleep every afternoon for at least 2 hours and had to give up employment as I have been so ill. I went to Uni at 19 nearly 20 and had been on the treatment for some time. By now I was weighing 7 and a half stone and had declined, but really pushed on the fact I wanted to go. I didn't listen to anyone, even though my Doctor told me it wasn't the best idea. I went for 5 weeks and came back hospitalised. I couldn't cope without care. I was getting so tired and skipping meals, being sick and not telling anyone. I just wanted to fit in. The on campus doctors were useless. I was a mess. In the end I was stuck in my room day and night and could not get out to get food or drinks. People forgot about me as they thought I was unsociable. And I didn't know what to do. Four hours away from home. No car. No energy. Nothing. I thought I was going to die. I was admitted for 6 weeks, but somewhere I managed to get better. The first week is blank to me even now and I don't know how I did it, but I did. I ended up with pneumonia too. Very very lucky. I was in bed for months afterwards, my parents did shifts with me, cooking me meals, washing me, giving me my medication and physio. I honestly have no idea where I would be without their support. I lost my job, my education, my health, even my long term boyfriend left me. But I came out of it. It is not something to be taken lightly.
I still go through ups and downs with it now. I have just come off Ivs and had Ivs 3 weeks and a half prior this batch. I struggle everyday and the only way I can describe my lungs is like a thick black cloud. It's never productive for me, but very wheezy and crackly. I went through a stage where my phlegm changed in taste, so that is something to look out for and my energy levels are shocking at times. I am and have been a very tired person.
Do not get me wrong I will not let this defeat me and I believe I probably am I worse case scenario, but it is so important to take note of everything. It is no use saying everything is always hunky dory, because it's not. I am in touch with Brompton constantly and am in fact going up there for a review this month to discuss another path. Dr Bilton is a god send! Please if you do not know this lady, get in touch! I am from Cornwall and my goodness has her expertise been an inspiration.
The treatment regime is not for the faint hearted. And it is a regime where once you start, missing anything is not an option. The more you break the treatment cycle, the bigger the chance the Myco will become resistant. And I can't stress the importance of this. Food is another thing and not eating is detrimental, if Myco strikes the weight will fall off and that extra is really the difference between hanging in there. I would suggest getting an E-flow if you don't have one. The nebulised meds are so thick and gloopy they wont go through any other device. And the bog standard you lose half out of the window!! I would also suggest bone density becomes important to be checked. The Myco and meds have made my bones very weak. And I am going to be going on infusions... They are pain free and strengthen bones. This is just as important. Brittle bones also lessens chances of transplantation, so I've been told.
There is no reason why your son can not be in an excellent condition, but please do not end up in the trap I did. Ask questions, make sure he eats good food and really puts 110% in. That means rest days. At Uni I did party more than my body can handle. Limits are so important. And you really seem like an excellent mother. It is so hard to tell your children what to do when they reach adulthood, we all think we know best... but we dont! I wish I listened to my Mother and took all the support possible, perhaps if I did I wouldn't be in such a sorry position. It is your care and support that will get him through this, all I can say is have your wits about you, and if you're not happy with something, don't let it drop!!
I do hope it all works out. Wish you all the best
Here's my email if you need help or want to discuss anything: firstname.lastname@example.org