Hi Everyone, well after several 'problems' since December (2 exacerbations and 1 virus) my doctor at Papworth decided I needed iv's. It was agreed that I could do them at home as there is a very easy way of administering them which does not involve syringes with needles. I went on Wednesday to spend the day at the hospital having a canula fitted and the first dose administered by the Home IV Nurse and then I had to spend quite some time practising using the syringes before giving myself the second dose. The Nurse was satisfied that I could do it myself so home I came. I have to have the drug 3 times a day so I did the Wednesday evening one and all 3 on Thursday fine but Thursday night I was cold and shivering and then I got a very high temperature and was burning up. What I think had happened I had tried to do too much during the day, ironing, cleaning, gardening and cooking a meal, that I overdid it. When I have iv's in hospital I spend the first few days lying on my bed reading, chatting to my neighbours and dozing whilst the drug gets into my system, as well as being waited on hand and foot, after that I can look after myself quite easily and go for walks in the hospital grounds.
The drug is Meropenem which takes at least 40 minutes to go through the canula and about an hour and a half altogether to do all the rest of the procedure - laying out the sodium chloride to flush the line, ceftazidim (which I think is part of the drug), the meropenem, and heparin to keep the line open so it's not good being in a hurry to go anywhere. The drug company lend you a fridge to keep your drugs in and a delivery of replacement drugs is made every two or three days, this goes on for two weeks. I go back next week to see the doctor and check that everything is O.K. and then the following week to have the canula out. The week after that I am back on the Trial Drug so it was lucky that this was a month off it.
Sorry if I've gone on a bit but I thought you might find it interesting for newbies and those of you who have done this then it's old hat. Take care. Lizzy x
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Hi Pen, thanks for your post. I've learned my lesson and am 'behaving like a patient' as my doctor told me to do. I hope you are now happily settled in Cheltenham, such a long way from Bury-St.-Edmunds! Take care, Love Lizzy xxxx
Lizzy - what an ordeal. You cope so brilliantly - I would tend to agree that you overdid it. Please take it easier and give yourself time to get back to your fighting fit self! Look after yourself, lots of love TAD xx
Hi TAD, thanks for your post. I'm trying to get fighting fit so that I can get back to my Health Club and join in the classes which I am paying for and not attending. The doctor said behave like a patient so am trying but it's not easy. Take care, love Lizzy xx
Your consultants are 'on the ball' at Papworth. I would think they also want you to be at your optimum best for the next 28 day session of the trial.
I hope your high temp has now subsided. It is very difficult at the start of an infection not to overdo things. I have taken down samples to GP when filthy gunk and high temp (albeit low grade at that stage). Come back - rest a bit - and then mow the grass in front garden, 'cos I know later in the day when it kick off big time I will have all on to make a cup of tea. It's what we do. We carry on when the normally well would be tucked up in bed!
I understand the flush. The Heparin is a blood thinner to stop the blood clogging. Meroperem is quite a powerful ab. Sounds like you are also having Cepthazadime, which is another heavy ab. Have I read this right?
Good on ya sweetheart - it's hard work and time consuming. You must be up to here with hospitals and medics what with the trial and infections. Do you know tbw what you were growing?
Hi cofdrop, thanks for your post. I don't mind going to Papworth because the staff are all so lovely, it's just the 90 mile round trip that's the fly in the ointment so to speak. But I've found out I can have an ambulance car so whilst I'm feeling grotty I shall use that. I didn't have to give a sputum sample this time, I think they had all the evidence they needed from my trial samples, I usually grow Pseudomonas Aeruginosa and P. Rhodesia.
Thanks for your post Lizzie, I found it very interesting about the home IV's...I think the next step for me will be IV's and I hope that I will be able to do this at home too. although the last time it was mentioned for me they were talking about me going to the hospital everyday as an out patient to have the IV treatment...but at home would be much more convenient
I agree with Peege, do take it easy, you normally would be lying in bed have IV ab's just because you are at home, doesn't mean you can carry on normally. Give the ab's a chance to work before you get so busy with stuff
I hope you get better soon, and I send you a 'BIG HUG'
Hi Sohara, thanks for your post. I am trying to take it easy and do what the doctor ordered, behave like a patient, but it's not easy. Papworth only set up their Home IV Nursing Team about 15 months ago as medication has moved on so much that the iv's are delivered to your home already mixed so it's just a case of following routine and connecting to your canula, the meropenem comes in a sort of ball that slowly deflates as the drug goes through the canula so you can move around whilst it's happening, it takes mine about 40 minutes, have a cup of tea, walk around the garden or just sit and read, watch tv etc. The next dose calls so thanks again. Take care, Lizzy xxxx
High Lizzie, i had 14 days IV Meropenem in hospital last november. Some of the nurses wanted to do it by injection but I've read that via the dripstand is better and asked for that. Just wondering if you are injecting it or using the drip method. The Meropenem helped me a lot so I hope it helps you too.
The overdoing it sounds so familiar and it seems we never learn. I can see quite clearly that my active days cause me pain and sob later on in the evening but when you feel able to be out and about it's very hard to resist.
Just started on oral Cipro and Doxy before going to the clinic next week to see what needs doing about the Aspergillus. Last night had so much pain that today I am actually staying in bed to give the abs a chance to work.
In Ireland only CF patients are allowed to have home IVs. From your description it sounds like quite heavy going and time consuming. I hope they work for you and you get a result from all your hard work.
Where I live at the hospital I attend Argana it is only the patients of cf cons who are allowed to do home IVs if able and comfortable doing it themselves. It seems to vary quite a lot depending on where you live. I am told there is also an IV team but not sure if they would come out at midnight? cx
Hi Argana, thanks for your post. My meropenem is delivered to my canula from a small polythene type ball that deflates as the drug flows into my arm so no injections or dripstands to lug around. I've just done my 2nd dose of the day and fell asleep whilst the meropenem was flowing. In the past I have had two weeks in hospital which is so inconvenient for visitors so being home, however inviting it is to do some jobs, is definitely better. Take care, Lizzy xx
It sounds like a good set up Lizzie if you can stay still long enough for everything to settle and work well. I do hope that you will be well very soon and send you good wishes and thanks for a great post. Very interesting. xxx
Hi sassy59, thanks for your post. I seem to feel better in the afternoon than either the morning or evening, don't know why, strange. Thanks for your good wishes. Take care, Lizzy xx
Hope you stick with it. You'll soon get into a nice routine and it won't seem so fiddly or take so long. I've been doing home IVs for my Dad for 5 years now and what a difference it has made to his life.
It's so much better to be at home. I honestly don't think he'd have survived if he'd had to be admitted to hospital for his treatments all these dozens of times.
I've got a plastic tray (I bought in the 99p shop!) that I think is supposed to be a dining-for-one tray. It's got 5 sections and I've labelled them for the saline, heparin, antibiotic, alcohol wipes and finally my epipen and egg timer ( to make sure I allow the right amount of time trickling the drug in). Makes things so much easier having my organiser tray. The whole process just comes naturally now, I think I could probably do it in my sleep!
And I never stop being MASSIVELY relieved and happy that Dad can be at home having treatment, living a normal life, with all his things around him, dressed in his everyday clothes, on his own sofa watching telly,reading, going on the Internet, going out in the car, seeing family and enjoying good home cooking. What a contrast to shuffling around a hospital ward in pyjamas and slippers feeling like a full time patient.
Being home is such a boost for morale as well as a whole lot safer from a picking up nasty bugs point of view. I can't speak highly enough of home IVs and I'm really excited for you to know that your management of your illness is about to be transformed. Very best of luck to you I really hope you get into the swing of it and start to feel the benefits and will be another very happy convert!
Hi iviviv, thanks for your reply, your organiser tray sounds a wonderful idea, I just use an ordinary tray. I know what you mean about being at home and how good it makes your Dad feel. If I'm in hospital for my iv's, after the first few days when the drug is beginning to work, I feel like a spare part and I'm just waiting around for the next dose but at home you can do little things (I've learned my lesson). My IV Nurse said I must see my own GP just to make sure nothing else was going on with me feeling so ill but she confirmed that I was O.K. apart from my lungs and I was to behave like a patient over the weekend so I'm taking her advice. Thanks for caring. Good luck to your Dad. Take care, Lizzy x
Hi Pen, thanks for the reminder, don't worry I've dug my heels in and am doing virtually nothing. Not quite on the 'up' yet but give it a few more days and I will be. Take care, Lizzy xx
Hi flibberti, nice to hear from you. I am allergic to Toby, Gentamicin, Colomycin, Penicillin, they all cause a different reaction in me. I too feel nauseous with the Cefa and Mero and I had a panic last night that my line wasn't working as it seemed to be leaking. This morning I got the Sodium Chloride flush in but then my Cefa and Mero aren't going through so it's a good thing that I am off to Papworth for a check up in a couple of hours, it will probably mean a new line - groan!
My delivery company are Calea and the things are delivered by Polar .......?, the drivers are brilliant, they arrive on time, check and put all the items in the fridge and are very pleasant and friendly.
I have phone numbers to contact 24/7, the Home IV Nurses (you have to interpret this as, they train you to administer home iv's) only seem to work 9 - 5 but there are other staff who can help. Also the delivery company have nurses that can be contacted 24/7 if you have any problems and, apparently, they will come out to you.
At the West Suffolk Hospital they have a COPD Team of nurses who come out to administer the drugs for you but only if you have a PICC line. Which hospital are you with? If you have a problem do you ring the BLF Helpline?
Good to have this chat with you. Take care. Love Lizzy xx
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