Wednesday, 8 August 2012

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

36 comments:

I want to breathe like you said...

Dear Kerry....

I've been down the road you are traveling & I know such words can be hard to accept, but I firmly believe, if such a time comes about, it will make the transition better for you, & your loved ones. I truly hope, such does not occur, & you can experience the wonders of being able to blow your own birthday candles out....it really is incredible. Never the less...I am wishing you the best & keeping my fingers crossed for your second chance. Much loves from the middle of no where, a place known as Nebraska <3

Lotti x said...

This really was hard to read, but as always you are so positive and strong! Honestly I don't know anyone as brave and strong as you!
My fingers are crossed and you are in my prayers!
Xxx

laura robson said...

I know you've probably heard it hundreds of time but what a truly amazing brave woman you are. I am 22 and have had a kidney transplant which isn't doing too well and I have been complaining about that! After reading your blog its made me 'man up' I am keeping everything crossed for you and praying you get your transplant and get the second chance at life you deserve. Thank you for sharing this. keep strong :) xxxx

staciep90 said...

Kerry it really was hard reading although I've been through similar conversation with my team. I really hope you don't have to go a hospice and you get your transplant. Thats great news about your weight though and I'm really chuffed for you, I have the opposite problem and have to lose weight, only 6 more pounds to go though :-).

Keeping my fingers... and toes crossed for you

Stacie xoxo

Cris said...

I'm certainly hoping for the best possible outcomes for you, Kerry. Thank you for taking the time and energy to post all this description of the ins and outs of this decision. It is helpful to me. I'm just a few steps behind you on the trail to transplant and may have to confront the same decisions you do. It's helpful to have a guide.

Anonymous said...

Hi Kerry

I was in the same situation as you nearly 13 years ago, and was scared of going on the Nippy but the RSSC at Papworth is a fantastic, amazing place and helped me accept it quite easily; I had the best sleep in months and used it for the next few months before my tx. Also it helps reduce the amount of oxygen you need which is important. I went home on it briefly when I became well enough and my husband and family became adept at fixing it up or helping take me off it in the mornings! I even took it in the car with a cigarette lighter adaptor although didn't usually need it, only for insurance:o) I loved giving it back after my tx too! Fingers crossed you get your tx soon - they are all a wonderful team at Papworth - and the fact that I am still here is testament to that fact. Very best wishes xx Jacqui

jacqui said...

Anonymous said...
Hi Kerry

I was in the same situation as you nearly 13 years ago, and was scared of going on the Nippy but the RSSC at Papworth is a fantastic, amazing place and helped me accept it quite easily; I had the best sleep in months and used it for the next few months before my tx. Also it helps reduce the amount of oxygen you need which is important. I went home on it briefly when I became well enough and my husband and family became adept at fixing it up or helping take me off it in the mornings! I even took it in the car with a cigarette lighter adaptor although didn't usually need it, only for insurance:o) I loved giving it back after my tx too! Fingers crossed you get your tx soon - they are all a wonderful team at Papworth - and the fact that I am still here is testament to that fact. Very best wishes xx Jacqui

8 August 2012 13:37

Anonymous said...

Kerry ... you truly are a special lady sharing this with us all. It really brings it home hard the harsh realities of CF and when people read this, hopefully it will make them see just how vital it is to become an organ donor should the unthinkable happen. My son is 11 and has CF and we try not to dwell of the negative aspects and I honestly hope he never reaches the stage where you are at. Stay strong and positive and the CF community will keep you and your family firmly in our thoughts. xx

Division Within said...

Hi Kerry. I also went through a lot that u are going through with CF. It was absolutely the scariest time for me and my family. It helped when a friend came over and spoke to me about Gods love and how anything is possible. He answered my prayers in ways i would only understand and in ways that spoke loud and clear he is here for me. I know as difficult as it sounds u need to keep exercising to keep ur body strong. If ur not aleeady u should be doing physical rehab so ur body stays strong. PLEASE try not to use the morphine and pain medd if u can. It extremelly lowers your respiritory rate, which is not something u want if ur going for a transplant. I wish u the absolute best. I can assire u the little things like the chest tubes etc for the few days after surgery are nothing compared to what ur going through now. You will love ur new life. Feel free to write or call anytime. Rzandlo@gmail.com or 602.303.6260..Take care Rich Zandlo

Anonymous said...

You are such an incredible young lady I have everything crossed for you. Its times like this I feel angry at myself for not being appreciative of what ive the state of my health and what ive got. Even through all of this you can still stay strong and positive I really admire you Kerry x

Anonymous said...

NIV was and continues to be a real help to me. And I started talking to a hospice 3 years ago given only 6 months life expectancy. I think it really helped rest me as you say and has certainly bought me more time. I hope it works for you in the same way. X

Anonymous said...

Hi Kerry,so sad reading your latest blog but know you will overcome this horrible time in your life and go on to get that precious call. Can't wait for the day to come that I will read you have had your transplant,about your recovery and then that you are taking your gorgeous puppies for walks and runs..if anyone can do this you can. All my thoughts and prayers are going out to you and your family. Take care Kerry. Love Cath. Xxx

peihome said...

Oh Kerry, I don't even know you but the feelings you evoke are real enough. :(
I pray that the bi-pap gives you some rest at last, and gives you the strength that you need.
I pray that someone out there is generous enough to be on the registry and that their lungs will save your life.
Thanks again for sharing your life with us.

Ducky said...

I can't say anything that hasn't been said already. I'm thinking about you lots. Fingers and toes crossed that your call comes soon.
Lots of love <3
-Ducky

Anonymous said...

Kerry,

Just want you to know that we're thinking of you here in Georgia and that you get your call for tx really soon.

Keep up that positive attitude. You're an inspiration.

God Bless

xxoo

Anonymous said...

i know its easy for people to say keep strong but unless they have been in your shoes they dont know how hard it can be to be strong and carry on. ive just recovered from quite a serious ilness and it really made me put my life into perspective.i had never thought of being a doner before and unfortunatly now i cant but i think more people should be aware of its importance.. i pray that you find a doner and get strong and well god bless. x

bubbly said...

Hi Kerry,I am on a bi-level nippy, it will help a lot but you might need help to get used to it. I am on very high level pressures. Someone who knows i used the nippy rang me up and asked advice and I told her the same thing. She listened to mine and was horrified, anyway she was fitted with a c-pap and the next day she rang me up and told me that it was the best nights sleep she remembers having !! I am on 50 mcg/hour Fentanyl patches and 10/15mls oramorph every four hours. I also take paracetemol and prn Diclofenac. I too wake up not breathing when not using the nippy....it stops that happening.I take diazepam. All these painkillers can and do make things like cough reflexes slow and could be why you are experiencing panic attacks and that awful feeling when you cannot cough out that phlegm, I have learnt to relax and try to gently "huff" instead of using a hard cough..........it works. Another problem that I have developed is claustraphobia, I think the painkillers are not helping that either so I have learnt to relax and tell myself that nothing has changed around me so it must be in my mind. I turn the light on and listen to Magic radio all night, when panicking I get up and go on the internet or read and eventually I sleep. I was offered palliative care and I freeked out... I wish that I had not.....what is to be will be and the palliative care people have vast experience and can improve how you feel a whole lot. Bless you Kerry, I hope very much that you will get your transplant and all will be well for you,I wish you all the luck in the world, Love bubbly(brus)

Rita said...

Kerry I wish you all the luck in the world and so hope you get your transplant.
xxxxxx

Kathryn said...

Kerry I am a patient at Papworth too, waiting for a heart and double lung transplant, I hope things improve for you and that you get your transplant soon x

Anonymous said...

Kerry, I just wanted to let you know that another stranger has just discovered your story and wishes you so much strength and peace and love. Keep going. Your call will come soon.
xxxxxxxxx

Anonymous said...

You are an amazing young lady. You are in my thoughts and prayers xx

Anonymous said...

Kerry thankyou for sharing your story, it brings tears to my eyes reading this and i hate the fact i feel so helpless to do anything, but i hear stories like yours so often and i know its hard to even imagine but keep holding onto hope you are in my thoughts and prayers every single day and you are such an inspiration, im so glad you have josh and such a good support network, family and friends. Keep trusting and have faith my beautiful friend xxxxxxxxxxx

Anonymous said...

Thankyou Kerry for sharing. You come across a strong person who lives life to the fullest, i have a lot of medical issues one being depression/anxiety and have suffered with it for 20yrs so i know how you feel on that one. Stay strong babe i will be thinking of you, everything is crossed for you to get your transplant. Look after yourself
xxxxx

Anonymous said...

Another stranger commenting to say that I heard about your story recently and am amazed by your strength and positive attitude as you deal with all of this. I'm a first year med student hoping to go into pulmonary and critical care medicine one day, and reading stories like yours is a reminder of what I'm working for. You are an inspiration; thank you for sharing your story.

Crossing my fingers that you get your transplant call VERY VERY soon and things get better for you. Good luck.

Anonymous said...

Hey Kerry,
Hope everything is ok for you, i am 30 years old this year and have CF, i have had to use the N.I.V for like 2 years now and to be honest. i dont know where i would be right now without it. it realy takes the strain out of breathing when i am short of breath or find i dificult to breath (almost panting/rapid breathing) i have to use it over night whilst sleeping and have got used to it,i use the nasal mask/pads (i forgot what they call them) it sometimes Bloats me like filling a balloon with air until its stretched to the max, but this is something i have got used to, i find Peppermint oil capsules help. just read most of your blog and just wanted to wish you all the best and hope everything is ok and you are well.
Much Bless

LC said...

Sad entry but when you say is all true. We need to have open dialogue regarding death.

I have pulmonary hypertension and on o2 24/7. I also use a bipap for sleep. It is a tremendous help and I find maybe relying on it more often now which is not good.

Jo said...

Hi Kerry,
This was very moving and scary to read! You're so brave. I hope you get your transplant asap so you can carry on with your life :) Stay strong girl xxx

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Chrill said...

Hi Kerry,

I'd been following your story for the last few years via the Evening Star website and then started reading your blog on their site, then 2 months ago after 2 updates it stopped, so I was really worried about you. Today I thought of you whilst sat at work, and I googled you to see if I could find the blog or anything and am so pleased that I have found your original blog! I've read through everything and caught up with where you are now and I am so pleased you made it onto the list and are staying positive. I look forward to the next blog and to find out how you are getting on with the Bi-Pap.
Take care, lots of love
Chrill, Ipswich x

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Louise said...

you are amazing and inspiring to everyone.
Im a childrens nurse and see so much of the pain and frustration non invasive ventilation and how much of a hinderance it brings to trying to have a "normal life".
I have my name on the organ donor register as do all my family in the hope that I may able to help someone someday, which I pray someone will be just as brave and do the same for someone like you.
Best wishes

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