Well 13 days of IVs and usually I should be feeling my best, but things just aren't going to plan, the IVs helped up to a certain point but then i developed this nasty cold and they stopped and as of today I have started to decline again, I had managed to pretty much get off 02 but now my heart rate is jumping up to 160 at resting and my oxygen saturation's are dropping into the 80ies or at least they have been today. I was thinking id need 02 at home but I didn't think id be needing it when I'm suppose to be at my best, toward the end of IVs. I'm worried, worried I have picked up a new bug, worried the IVs that i already knew I was resistant to have now just stopped working. My flem is thick and is making me feel like I am drowning at night, but to tired to clear, i let it carry on as I lay there gasping for breath and trying not to panic as I'm simply to tired. When I say to tired I mean the sort of tired where you can't even move, you can't even open your eyes, that's where I'm at. My body is exhausted again and my lungs are full to the brim.When I finally wake, i try to stay calm, not let myself go straight into a coughing fit, but i can feel all the flem choking away and it begins, usually i just hit the bathroom at this point, theres not point trying to catch the flem in tissues, its thick and flying out of my mouth when i finally manage to bring it up, my chest relentlessly aching away, my stomach starts to twist and turn as my muscles go into over drive, there squeezing on my stomach and I'm willing, begging, don't puke. As the flem comes up the gag reflex kicks in and sick is flying down the toilet, the sick is mixed with flem that i have swallowed in my sleep and this just makes me feel sicker. I try to stop, try to relax my stomach, but once its started its so hard to stop. My stomach is in pain now, its trying to stop but i don't know whether the trying not to vomit only makes you vomit more sometime and whether just going with it might make it easier. In between the vomiting I'm still coughing away trying to bring up the flem that is drowning me.
Its all just to much now, my legs are shaking trying to hold me up, I wish someone would come and hold me up now, rub my back, relax my body. I feel weak, my face is red. I collapse on the bath room floor and just stop for a second unable to really breath, stomach still in uproar. Just hold it in a second, then it starts again and now I'm trying not to pee, as my stomach muscles are holding in my bladder at one end as the relentless coughing is making them want to let go and trying to loosen on my stomach so it not squeezing and inducing sickness. These are often the mornings for me but it shouldn't be like this at the moment, I should have some respite from this daily on slaught. Eventually It stops and i collapse for a while back on the bed, feeling exhausted and that sleep has only made me feel more tired as the waking process is so brutal.
It worries me that i feel so chesty again and I'm not even off these powerful drugs. I wonder if maybe there is no rest anymore from this tiring effort.
The plan for going home, is tomorrow, I'm going home on home IVs. simple premade packs of IV antibiotics that i will carry on attaching to my Port(click to find out what a port is) 4 times a day and run into my blood stream filling me with the harsh drugs that don't even seem to work anymore. I'm worried that I may be back in here very soon, as the IVs seem to not be working, I'm worried things are going to start declining quicker, I'm worried that one day I will be at a point where I'm stuck in this place all the time, unable to leave until transplant or otherwise. I'm positive, I thing I will get a transplant hopefully fairly quickly and I will be OK but you can't help think what if it doesn't happen?
I have also depeloved the CF sinus problems, I haven't ever really suffered from this, but I seem to have developed them, first it was not being able to put my ng tube up my nose to receive my night feeds (to get my weight up) the passage had become swollen and to narrow to pass the tube, then about 3weeks ago I was getting what I call face ache, the parts of my face where my sinus passages sit under became painfull, coughing hurt my face because of the pressure. Then with the dryness of 02 it has dried up my passages which iv been told could have sinusitis so now there are clogged with thick musuc and finding it hard to breath, plus a bog standard cold on top has not left things in a good shape, so where I am with all that at the moment is constant nose bleeds, thick plastic, bloody lumps coming out of my nose, I feel like my nose is falling apart like some coke head!! Its rather frustrating and I'm waiting for the ear, nose and throat specialist to come and have a look and give me something, maybe some nasal spray and Wash's. I have to say this update is turning rather gross, I feel like a big mucus monster!! but that is CF, flemmy, sicky grossness. :-/
With the fact that I am now unable to NG feed and have not been able to for several weeks, I feel my weight is going to become more of an issue, I was holding my own and feeling pretty proud of myself, but now my weight is dropping 52kg not a good wieght for my 5ft 8 height and the a gastric feeding tube is being mentioned (click to find out more about the different types of feeding methods NG and gastric) I'm not keen to say the least, iv put it off for ages but if i carry on dropping then i will have to just bite the bullet and do it, transplant is the way I want to go and with out a decent weight I won't be accepted on to the list
I heard back form harefield last week, my next assessment app is on the 14th of march, not long now, one month. Ill b up there for 3 days with hopefully Stu and mum as theres so much that will be said its best to have them both there to hear it all so i don't have to relay it and miss loads out. They said that when they got my bloods back they found antibodies, for those who know about transplants antibodies in your bloods are not the same as blood types, iv had many people confused over this, I have 25% antibodies, this is not a good thing and appaerently not all that common, it means it will only lower my statistics on receiving a transplant, as I cannot receive a transplant off of 25% of the population thats 1 in 4 people. Harefield said this is most likely to result in false alarms as they will match me to a donor and then find out after they have called me that I am not a match because of the antibodies. I know this is not great news, but with transplant I always expected there to be obstacles and although I'm not a match for 25% there is a whole 75% that are and that's a pretty good figure right? So although I was originally upset and confused by this, I am feeling OK about it now.
I believe that is all I have to say for now, apart from if you've read I would love to hear from you, I really like getting comments and it fills in the long hours where I sit here alone, I am alone alot, whittling down the hours, I sleep very badly in here and tend to stay awake for large parts of the night and when I get a comment I always get excited. So if you have commented thank you and if you haven't i hope to hear from you soon.
Hey lovely!!
ReplyDeleteI had similar problems before I got the transplant too, I didn't become resistant to antibiotics but I was highly allergic to a good few and they had to look at some not so common antibiotics for me. Maybe that's something they should look into, different and less known IV's. When they put me on Tementin the first few times I felt a massive difference.
Also I had the nose thing too, I had to 'clear it out' as I called it at least three times a day and always had to use numerous tissues. Not nice but needs must and all that. Hope the nose doc can help though!!
Love V xx
hey :)
ReplyDeletei have posted a few comments previously. my boyfriend was diagnosed with CF as a child and was once told that if he didnt have a heart and lung transplant, that he would die (this was age 14).he is celebrating his 21st birthday in march this year and although we've only been together for 10 months, we've had long talks about CF and what it means for him and for us. luckily he has had over 70% lung capacity for over 5 years and he's definitely a fighter!
he is looked after by visits to the royal brompton every 3 months, which ive been able to go with him to a few times, and for someone who doesnt suffer from CF, its a real eye opener.
my boyfriend rarely talks about the tougher times from his past..its usual his mum that talks to me about it, but its very interesting for me to read it from another persons perspective.
i honestly wish you all the luck in the world and pray that you get the second chance at life that you and all over CF sufferers deserve
c xx
Oh Kirstie
ReplyDeleteI thought I knew about CF but your graphic description has put it in perspective for me. I don't know how you manage, but you must continue, be strong, until you get your call.
From all I have read about you are motivated, determined and don't accept failure. You will succeed.
As well as the physical effects of CF you share the emotional side in your blog. What I hear from you is loneliness and fear. Doctors can treat the physical symptoms but how do you treat the emotional side?. I can't tell you what to do, but you probably know the answers anyway.
Take care
Dave
PS Not so keen on the green eyeshadow!
Huge hugs. Hope the nose doc helps... Your blog is so open and honest you will helping so many other people with cf and raise awaraeness of this god awful disease, you should be proud of yourself. Xxx
ReplyDeleteHi Kirstie,
ReplyDeleteI love your blog - it's a real skill to convey exactly what you are feeling, the ups and the downs and especially the downs in all their gruesome glory ;). It's the side of CF that isn't talked about in leaflets or magazines but it's what makes it really hard for other people to understand what it's like to have CF and why living with it can be so relentless and unforgiving. It's also the side that's so important for raising awareness about cf and transplantation. So thanks for your honesty, determination and passion.
Sometimes drugs don't work and no one knows why and sometimes they do and at other times things can get better when nothing seems to have changed. I hope things will get better for you soon. Keep positive and keep believing in yourself xx
Hiya,
ReplyDeleteBrilliant blog entry. People shy away from telling people the nasties of CF and I think people need to know!!
I have terrible sinuses and I'm on 3 different nasal sprays. Nasonex is a steroid one which is brilliant, otrivine (you can also buy this over the counter but I've got it on prescription) and just normal saline drops. They're all really helpful! Oxygen specs give me terrible nose bleeds and the saline drops counteract this by rehydrating the gunk.
Sending *hugs*
Gem xxx
Dear Kirsty,
ReplyDeleteI’m sorry things are not going as planned and that your chest is not behaving itself. I fully recall the non-stop coughing and sickness and exhaustion that follows.
Is there no way, your physiotherapists at the hospital could do some percussion physiotherapy for you say half hour in the morning and again in the afternoon? I recall Gemma on the forum had a home physiotherapist, is this something you could now ask for, especially as you are about to be assessed for transplant. I would ask you team about this and/or you’re GP and put in a strong argument, alternatively I think you should ask for The Vest. The vest is minimal work on your part the vest does the hard work and you just sit there with it on and when it stops vibrating you huff switch it back on huff some more and then a nice cough, bringing up loads especially from lower down and what has been stuck in airways. I had the vest for about a year before my transplant as I was doing up to 5 hours per day physiotherapy to shift the constant build up. I was able to reduce the amount of hours I spent doing physio and I had more energy at the end of the day and more quality time with my husband. You really need to push for these things. I had to fill in a 22 page document to get funding from my local authority for the vest, but it was worth it in the end.
Wishing you all the very best, if you need any advice re paperwork on the vest then please get in touch at
josephine.josephine@fsmail.net
Take care Josie x
hi kirstie i no how your feeling i have cf am nearly 31 and i feel just like u am in hospial at the minute been in 2 weeks tomorrow and i dont feel any better ive been on oxgyen now about 5 months i never wanted it be on this and am waiting for a transplant ive been waiting 2 and a half years now am getting fed up as am getting worse i just wish i would get a call. i also have antibodies aswell so it makes it harder.i also have 2 children who are 12 and 7 they are both fine so i need to be here for them am finding hard now i get tired easy and i carnt do much.well take care and wish you all the best for transplant
ReplyDeleteHey xx just a little thing about ur sinisus's xx i get really bad sinsitus too, i get alot of what of face ache amd my nose gets really dry. every morning i take a tesco cold relief tablet, 2 if its really bad and then i have the cold n flu max strength for bad days xx but they do really help xx i wudn't survive without them!! xx not sure if u tried them, but i just thought i'd mention it xx might relief a few of ur symptoms xx
ReplyDelete