Hospice Care & Starting 'NIV' (Bi-Pap)

When these words were first mentioned to me, I was in shock and extremely frightened - to me, the hospice is where people go to die, so having those words said to me indicated that I really am dying. Even though I know it and everyone around me knows, if I don't get my transplant, I'm going to die, but hearing it from professional like my CF team at Papworth really makes it hit home.

I had the community support nurse from St Elizabeth Hospice come round for a meeting today, we'd been communicating via email but there is only so much you can do over email, we needed to meet and go through everything. On Wednesday in clinic I saw Julie, my palliative care nurse and we spoke about a variety of things which she said the nurse could help with, such as pain management, helping my anxiety and many others, so Josh and I thought of everything we wanted to say and went through it with her today.
She is going to speak with my GP as soon as possible about increasing my pain relief dose as it hasn't really changed in over 2 months and I'm now 'used to' the dose, so it isn't as effective, I'm on the starter dose for Oramorph (morphine) which is between 2.5-5mls, I take 60mg of Oxycontin twice a day (a 12 hour release Morphine) which basically covers my background pain, I also take 1g of Paracetamol every 4-5 hours for general pain and also to control my temperatures as I tend to get fevers and temperatures reaching as high as 38 degrees which isn't pleasant, the Paracetamol dose can't really be changed as you aren't allowed to take any more than 8 tablets a day, but my Oramorph dose can be increased and so can my Oxycontin, so I think that is the plan. I'm also on an anti-anxiety tablet which I take before sleep, as this is when I'm most anxious, or when needed during the day, eg. when I'm going for a long car journey. I'm also on an anti-depressant, which doubles up as an anti-anxiety tablet too but it also has side effects of weight gain and drowsiness so I was put on this tablet in the hope it would help my weight and my sleeping pattern but I've been on it now for almost 3 years and the dose hasn't changed, so that could also be altered.
I am potentially going to be switching to a much stronger anti-anxiety tablet called Diazepam, which is a is a muscle relaxant so it enables the body to relax, it should allow me to 'switch off' my brain at night and get sleep without waking up scared and it might help my panic attacks too, if not it should help with my sleeping and my anxiety. So I hope that my GP is okay with all this and things will start to improve soon, it's hard enough dealing with CF, waiting for a transplant and all the other health issues I have, having mental health problems too is difficult, so if anything can be done to help my anxiety and my emotions, that will be a breath of fresh air, which is always welcomed, lol!

We also spoke about where I'd like to die if I didn't get my transplant and for whatever reason things didn't go to plan, I had always said I'd like to be at home as opposed to in Papworth because I want to be with my puppies, I want to be surrounded by my family and being in Pap is 1.5 hours away, if I suddenly went downhill, some of my family might not get there in time. She then informed me that I could always go into St Elizabeth's Hospice because you are allowed to take pets there, I'd be put in a side-room, so no risk of infections or catching anything from anyone else and it is in Ipswich, so I'd be near everyone if the unthinkable happened, so this has definitely made me think about it differently, my pups are a huge thing for me and I absolutely hate being away from them, they are my babies and even going out for an hour makes me miss them like crazy, so thinking I'd be without them if I died is awful, so knowing they could be with me, I'd be made comfortable and I'd be in a safe environment, at home there is not guarentee I will be 'comfortable' however, she did say there are a team that would come out to me at home and basically look after me, but I'm definitely thinking about that now. I am going to have a visit after I've been in hospital to see what I think, get a feel for the place and see if it's something I'd like to put into my 'plans and wishes.'

I was also informed about complimentary therapy, I can either go to the hospice or they can come out to me, basically they do aromatherapy, massages etc. Which would be amazing, nothing better than a lovely relaxing massage, so I'm being referred for that! She also said they have supportive services for family members, I have a few people in my family who find it difficult coming to terms with everything that is happening and they can arrange meetings with my family, or myself, to hopefully ease their worries.

All in all, it was extremely productive meeting with her and I feel we got a lot out of it, she got to my house at 4 and didn't leave until 6.45!! It doesn't matter how breathless I am, I can certainly chat :)

We called Papworth today and they said they think there will be a bed ready for me on Friday to go in and start the NIV machine (bi-pap/nippy) which at first I struggled to accept, to me it was kind of last resort, I always thought as long as I'm not on oxygen, or as long as I'm not on NIV, there's always something new to try, but now I'm on 24 hour oxygen, I'm on all varieties of pain meds and I'll now be on Bi-pap, the only option I will have is transplant, so to begin with I couldn't deal with thinking about it, but now I have realised I'm extremely unwell and the longer I put it off, the more unwell I can become. It's not the easiest thing to tolerate and some people can never get on with it, but I know I don't really have a choice, my friends who have used it said it allowed them to have a rest as it essentially breathes for you, so you can just lay there/sleep with it on and let it do all the work, I'd just chill. Many people say it allowed them to have better nights sleep as they weren't struggling to breathe all night and it then helped during the day as they felt rested and weren't so exhausted, so it sounds like it could hopefully be really helpful for me. I had another 'scary moment' the other day when I couldn't breathe, I felt so blocked up with phlegm, nothing was helping and it was like the more I coughed and cleared the stuff, within seconds it was back and I was drowning again. So basically I had to have a huge cough every 3-4 breaths, which made me so tired and exhausted, my muscles in my stomach were hurting and I was almost sick many times, eventually my body let me sleep and I woke up a few times in the night not breathing very well, so this was the final straw for me and I thought that's it, I'm going to go in and start this damn machine!! So please keep everything crossed I get on with it okay, I know it's not going to be the most comfortable thing, but anything that helps me to get sleep or aids my breathing in anyway will be great. This was also something that the nurse today helped with because Josh is never sure whether to call an ambulance when I have this funny breathing moments, sometimes they pass so quickly but other times they last a while, but he always has in the back of his mind that I don't want to die in hospital, so he's always unsure what to do and what I'd want him to do, as when these attacks happen I'm not really with it so can't tell him what to do, so thankfully she gave him a phone number which is a 24 hour helpline, they have nurses/doctors/health care assistants and advisors that can come out to help me without calling an ambulance, but they can also help Josh to know if he should call 999 or not, so that has taken a weight off Josh's mind as he now has someone to turn to in those scary moments.

So that is pretty much all I have to say :) I feel this blog has been quite positive despite being about a rather nasty subject, I understand it's not easy for anyone to read but as I always say, I like to be as honest and open as possible, whether it's good news or bad.
Of course I can't finish this blog without a little weight update, this is a good one :) I had my feeding tube removed on Wednesday because my weight is so good and I haven't actually used it since September last year, so it was a waste of time having it. I do know that during my transplant recovery I will have to be fed via an NG tube, which is a tube that goes in your nose, down your throat and into your stomach, I tried to use it before but I couldn't pass it without being sick, but I've come to the conclusion that I will have more things after transplant bothering me, like 4 huge chest drains, a ventilator tube down my throat, catheters and lines in the most awful places, I think I can deal with a little NG tube and it would only be until I am able to eat for myself.
Regarding my weight gain, I finally hit 47kgs today. Wow. To some people that's probably nothing but it makes my BMI over 19 which is great and a figure I've never been anywhere near before, my highest ever recorded weight at Papworth was 44.3kgs, so I've totally smashed that and I just seem to keep increasing every single week, it's crazy, soon I'll be told I need to lose weight! Very strange :)

Thank you for reading.
xxx