HOME IV

[Hollyjt]

Wondering if anyone had problems with Blocked picc line while having IV treatment at home with mero. It happened to me twice when I had treatment. Had to go hospital twice to have it sorted. It never happened when I had this treatment at hospital. I found it quiet stressful. Plus just found out the mero hasn't worked. Don't know yet what the next step is. I am very difficult to treat as have had reactions to most antibiotics. Thanking You

[Mooka]

Hi I had a blocked line once - different antibiotics though. Like you I was sure it was something I had done something wrong but the nurse assured me that it happens frequently. My veins aren’t good at the best of times so I blamed them. I hope they find something that does work for you soon. 🤗

[Hollyjt in reply to Mooka]

Thank you for your reply im afraid this is the only option I have go into hospital or have them at home. I had nurses that did mine at home THE OPAT Team Nurses it is a new thing that has been set up to have iv at home. I had 3 days in hospital then brought all the medication and all that was needed home. It depends on what my blood show this week. 🤔Take care and safe Holly 🤗 x

[cofdrop-UK]

OMG we could be twins. Mero isn’t working amazing well for me anymore and I am intolerant to many many medications.

Mine has never blocked as such but there have been occasions when I have forgot to unclip and I empathise with that dreadful sense of dread at 12 at night in your jamas when a trip to 5* seems inevitable.

Next time I have Ivs I am to go in for a couple of days whilst they monitor a new to me drug, then complete at home if ok. They did this with Astreonam.

Maybe they may do that for you.

After having my PICC line in since last Christmas, I have just been informed that there is a date for my port to be fitted. Friday 13th Nov. We go into tier 3 on Monday but I have to go into isolation as from now.

Until the nurses called I have experienced injecting the Heparin a bit harder the last few days. Seems it was a bit twisted. Did you ever find out what the problem was?

Love cx

[Hollyjt in reply to cofdrop-UK]

Thank you for your reply I only manage to go 2 weeks before pseudo showed again. Feeling really down at the moment this pseudo is a nightmare when things don't work out. Yes the PICC line was bent on the end when they replaced it.😠 It is a problems when thing go wrong when it's at night. I'm so pleased they are trying a new treatment for you wishing you a very good outcome. What is a port please. ? Love HollyX

[cofdrop-UK in reply to Hollyjt]

cff.org/Life-With-CF/Treatm...

I am having my port fitted into my arm. It’s not really a treatment, just a different method of access. The benefit is that it is beneath the skin and so you can bathe and swim when it is not in use and doesn’t need flushing every day but once a month.

I seem to have been waiting a long time due to covid but it all seems a bit too quick now🙀

Just wondered as you, like me, are intolerant to lots of medications if you are ok with Ciprofloxacin, and prophylactically nebulised abs or Azithromycin. Wish I could - wouldn’t have this malarky.

Feel for you - it’s hard. Hope they can give the pseudo a kicking and give you a break.

Love cx

[Hollyjt in reply to cofdrop-UK]

Hello Cofdrop The port sounds good if it doesn't need flushing everyday and easier to manage. No sorry I can't have ciprofloxacin as I ended up in hospital with it my kidneys were shutting down when on it. I had a phone call at night to say I had to go to A E they said I was very ill. The renal team said I must never take it again. Can't have nebulizer antibiotics or Azithromycin have had bad reaction. Been told I'm very complex to treat. So it is down to Ivs. Feel for you too wishing you all the best for this new one they are going to try. Keeping my fingers crossed. To my virtual twin. 😘 XXX Love Holly

[cofdrop-UK in reply to Hollyjt]

Certainly same as you then. So sorry Cipro affected your kidneys and you ended up in hospital. I have tendonitis with them so can’t have them (bad news with pseudo). Nebulised Colomycin put me in 5*. We are defo complex.

They are not trying an IV but were talking about what they would do when the next exacerbation rears it’s head.

I empathise and have my fingers crossed for you for your future treatment.

Love cx

[Blue58]

I've heard of a number of people having problems with their IV's at home. I too am very drug sensitive and as a severe asthmatic I find that once the IV's start stirring everything up in my chest it makes my asthma a lot worse and for that reason I was advised by a Respiratory Professor to insist on having treatment in hospital due to the severity of my asthma condition. I think it is a sign of the times though and the years of underfunding in the NHS that it's become cheaper to treat at home which is great if it works but I would imagine it can be scary at home on your own if it blocks. I've not tried it so can't comment really but I would imagine there is no substitute for having the professionals to hand and less stressful.

[cofdrop-UK in reply to Blue58]

I can defo see your point. I have asthma too. I prefer to do IVs at home and have not had a real problem with them. I know too that I can contact the cf nurses or if it’s evening I can phone the ward. It has meant for me that I could spend the last 2 Christmas holidays in another city with my family instead of being in 5*. The nurses come to my home to do a mid check.

I appreciate it wouldn’t do for everyone. We are all different. Next time though I have to go in if they intend to use a different ab and if it’s licenced for home use then I could continue at home after being monitored if tolerated. There is also a home service.

It’s all very difficult though for everyone whatever method used in these difficult times.

Love cx

[Hollyjt in reply to cofdrop-UK]

Brilliant that you can do your own Ivs. the nurses that came to do my Ivs at home said they would support me if I felt I would like to do my own. We will see.? Holly x

[cofdrop-UK in reply to Hollyjt]

I think there are quite a few on ere who do or have done home IVs.

I like the independence and not having to wait for folks to visit and I know the meds are given at the correct time. On the other hand for some reason (probably because I live alone) only fir the first dose following one at the hospital during the day I always text my daughter when I’ve done that one first dose late at night, after that it’s just routine, although harder in the first few days whilst you feeI so unwell. I know I won’t always be able to do it, either i may no longer feel confident or the ab isn’t licensed or whatever. I wouldn’t do it if I wasn’t given 2 Epipens.

I wish you well whatever you decide and there is no rush. It’s certainly not for everyone and a person, along with the medics must all be comfortable and confident and it’s what’s best for you which matters.

Love cx

[Hollyjt in reply to cofdrop-UK]

Yes you are right it's what everyone is comfortable with. But they must have great faith in you to agree to you doing it and it must take along of confidence on your part. So I think you deserve a 🌟 🌟🌟 Love Hollyxx

[cofdrop-UK in reply to Hollyjt]

Thanks Holly. I think lots of their patients with cf do home IVs which is good as it means less stays in hospital. Whilst it costs the NHS less not have someone on the ward for 14 days, I really don’t believe it is down to cost alone as, especially for paediatrics it does give a much better QOL to be at home.

My one issue and it is one shared by others with BE is that you have to take all your syringes, needles, wipes, drugs etc from the hospital when you are feeling unwell and nothing, apart from posiflushes Are pre filled. Patients, with cf, quite rightly, have things delivered with a fride for pre filled Heparin. I have doubted this recently when our dear friend Charlie, who has a daughter with cf had problems when they didn’t deliver some of the stuff. Charlie gave me good advice and info re ports and I am hoping his daughter is doing well.

Love cx

[Hollyjt in reply to cofdrop-UK]

Definatly alot better at home. Yes there's a lot of stuff to take home the nurses could do with a IVs stand. We compromised with a coat hanger put high tip from another patient. 😂 Hollyxx

[cofdrop-UK in reply to Hollyjt]

😂 Sounds a bit DIY. I don’t use stands, just syringes. Not a coat hanger in sight😉

Xx

[Hollyjt in reply to cofdrop-UK]

That would be great it wouldn't take very long hospital use a stand and let it drip by gravity I think your way is much better. Sometimes it can go slow.. I wonder why they all have different methods.the nurses said they don't use it that way they use it by boulus I don't know what that is or if I've pronounced that right. Curious.🤔 Xx I'm learning. Thank You

[cofdrop-UK in reply to Hollyjt]

It takes about 10 to 15 minutes to inject the ab and I think it would be time consuming for nurses to do it generally in this way with a ward full of patients.

Love cx

[Hollyjt in reply to cofdrop-UK]

Yes your right I don't know why they give it the way they do as your way is much better and a lot quicker. they bring the saline bag once it's mixed and put it up on stand and attach it to PICC line. They don't stay with me it takes about a half an hour in hospital later they come back and flush the line. At home it takes about a hour by the time they prepare every thing mixing the Mero then adding to saline. Besides everything else. I feel so guilty that it takes that long so time consuming. More so if I'm to have it at home so soon after i've had it. It is added worry to me. But the nurses don't seem to mind they just say slow and steady. I think your way is so much better I wish they would consider the way you have it they wouldn't need the lines and the big bag of saline. Can I ask does yours come all pre mixed as I've never seen it that way. I know one of the nurses said they have trained patients to use the bolus method. Holly x Thank You

[cofdrop-UK in reply to Hollyjt]

Not sure what you mean by the lines Holly. Our flushes are pre-filled now, although they weren’t always. No it is not pre mixed and as far as Mero is concerned, I don’t believe it can be pre-filled.

1. You have 2 pre-filled posiflushes.

2. You draw up 20ml water for injection into a 30ml syringe.

3. Clean the rubber bung on Mero bottle with Sani Cloth.

4. Go through rubber bung with syringe of water for injection.

5. Wait for Mero to disolve and then draw it all into the 30ml syringe. Take it to the 20ml mark and get rid of any air.

6.Break top off Heparin glass bottle. Draw up into 10ml syringe, using filtered needle as it is glass.

Good to go.

1. Unclip extensions from smart site. Clean end with Sani cloth.

2. Inject into extension 1 posiflush

3. Inject Mero over 10 to 15 mins.

4. Inject into extension other posiflush.

5. Inject Heparin.

Done.

Xxx

[Hollyjt in reply to cofdrop-UK]

Sorry just using my words I should have maybe said tubing. Ha ha you can tell I'm not used to this home treatment but it looks like I'm going to have to learn. Thank you for the list it might come in handy. 😊 x Holly

[Hollyjt]

Hello yes you are right I think it is a sign of the times it is nice to be at home but is very stressful when thing go wrong and the hospital have to be contacted. The GP said it depends on my blood I might have to be admitted straight away. This pseudo makes me feel very ill. Take care Holly. Xx

[Blue58]

I get very annoyed when too much emphasis is put on blood results. I think most of us know when we have an infection brewing and it can be very distressing when you are feeling quite poorly but feel like you have to fight to be heard. Having been told by a Respiratory Professor that there is a time lag between an infection taking hold and it actually showing in your blood means that we can end up being quite poorly before treatment is started if everything comes down to blood results. He was a very abrupt individual though who would often say "A good Doctor only needs a stethoscope and a pair of ears to listen to the patient's symptoms to diagnose a chest infection" I don't think it works like that anymore though as I am going back a few years now before the introduction of Hospital Trusts and a time when Doctors could be Doctors based on their expertise. Now it is all about test results. It's just a pity the human body is still the same as it has always been.

[Hollyjt]

Difficult times now it's very hard especially since this virus. Yes years we had a doctor that was very abrupt but he was a very good doctor . Take care keep safe. Holly x