Thursday, 19 May 2011

Operation Date, IV's and A Very Bad Reaction!

I started IV's yesterday afternoon, after two very busy days between hospitals.

The first started at Addenbrookes Tuesday afternoon, I had an appointment with the surgeon who would be fitting my feeding tube. I explained to him I had a few things on in June, so I'd want to either have it after, or before where I'd have enough time to recover. He then said he could do the 26th May, which is Thursday and also my Mum's birthday! But I had to take that date, so that means my poor Mummy has got to spend her birthday between Papworth and Addenbrookes, seeing her daughter have an operation! :(

So the feeding tube is something I was so reluctant to do, I am dreading it and I know I will hate it. But as I've said before, if I want to be alive and have a body to hate, I need to have the tube - otherwise, I will never get on the transplant list and I will die! So what choice do I have really?!

I then was back at Addenbrookes Wednesday morning to have my PICC line inserted, it went in first time with no problems :) apart from it being very sore and achey once the local anesthetic wore off. It is still hurting quite a bit now and is pretty bruised, but it will hopefully calm down a bit over the next few days.

Then after I had my first dose at Papworth I was sent home on IV's - Meropenem and Ciprofloxacin. A lot of drugs require blood levels checked every few days to make sure you are not getting too much/not enough of the drugs, the two drugs I've been prescribed don't need levels checked for around a week, meaning I don't have to go back to Papworth until day 7 and day 14 of IV's. However, as I'm having my feeding tube next week I will be going into Papworth to stay in on Tuesday, so the levels isn't too much of a problem.

I have had both of these drugs before but you can always become allergic to something. The last time I had Mereopenem was in January, this is a drug with a common side effect of sickness, so I was prescribed anti-sickness, however, last time this was not enough to cope with the amount of times I was sick, so it was stopped and replaced by another drug - Ceftazidime. I did mention to my consultant yesterday, when they told me I would be on Meropenem again and they gave me anti-sickness and told me to see how it goes.

Well, how it went was very very badly!...
Last night, about half an hour after the Meropenem second dose, I projectile vomited, I then went very dizzy, developed a high temperature, yet felt absolutely freezing, my whole body was shaking and eventually I collapsed on the floor. Afterwards, my body didn't feel like it was my own, I was shaking and had no control over my legs, I tried to walk but couldn't, I felt like jelly! I don't remember going to bed, but when I woke up today I felt the same, still feeling very sick and I couldn't walk, I tried to get out of bed to go to the toilet and fell on the floor :( 

I'm okay now as I haven't had any of that drug since last night, I still have a bit of a headache and haven't dared eat a proper meal yet, I've just been eating small and often, but I'm much better than I was last night/this morning. It's scary how something that is supposed to make you feel better, can make you feel so bad. I feel a little bit of an 'I told you so' but I understand why they gave me the drug in the first place and if it does work, it works well, so it is a shame I have developed this kind of reaction to it.

I have some pictures of me setting up the evil Meropenem! As you'll be able to see, home IV's are not an easy option at all, especially when you are so weak and exhuasted as I am (due to infection) when you have to do a lot of work to give yourself the drugs, it takes it out of you. The Meropenem was supposed to be 3 times a day, each dose 6 hours apart and the Cipro 2 times a day, 12 hours apart.

Good job I don't have a fear of needles, lol!

For those in the know, a PICC line is different to a port and doesn't require you to be completely sterile, all the syringes/needles etc. are sterile and I have to be careful, making sure everything is clean, however, there is no need for gloves etc.
Also, Papworth don't use the same pre-made IV's that some other hospitals do (including Ipswich Hospital!) so I have to draw them all up myself -

So as you can see, IV's are not a cure. They don't always do their job, but when they do work, they help to ease the struggle - I become a little less breathless, I won't cough so much and will have a bit more energy. 

The grass is always greener on the other side, unfortunately standing in the way is a huge mountain that you have to climb, but once you get over that, things will be a little easier - well, until next time anyway.


Anonymous said...

WOw Kerry you really are such a huge inspiration I wish you all the luck in the world love gem x t

Jess said...

I was really against having feeding tubes, didn't get one until right after my transplant bc I wasnt allowed to eat due to reflux. I didn't have any choice either. I still have a J tube and I'm glad I do because I still don't eat enough calories without it, even a year after tx. Eventually you'll feel glad to have it. Takes the pressure off.

Michael said...

I saw you in the paper and found you online after hearing about your story. It sounds so hard to go through the things you do daily and you still manage to keep positive. I hope you can live your dreams and have a long life. I am now on the donor register, I had carried a card for years but never signed up until now. Goodluck

Little Harriet said...

ugh yeah Mero is a nasty IV- was so sick on it.*hugs*Love the photos,not seen a picc line before what with having a port. Big hugs for the op.


SiobhanMartineCaitlin Osborn-Wales said...

you are very brave kerry!!!!!! XXXXXXXXXXX Miss you!