Still under house arrest

[Stitcher48]

Really fed up,I've had infection since September 2015,I've had 4 courses of IV taz and constantly on either coamoxiclav,1000mg amoxicillin,inhaled colomycin and arithromycin,in the past eighteen months. I think I've had a total of twelve weeks when I haven't had to take an antibiotic,,this infection though not as serious as some I've had in the past is just leaving me so exhausted and low,I haven't had a break from antibiotics in months and no closer to getting over the infection,I can't believe I'm actually wishing to be admitted to hospital,I was last in October past and knew then that another round of taz wasn't likely to work and I'm afraid it didnt...so just waiting to be able to send in another sample,at least I'm not worrying so much about not having enough oxygen to get out and about as I've just been too unwell to go out at all the past few weeks.

Still waiting to have portable oxygen issues sorted out,awaiting reassessment for portable oxygen again,absolutely no need for it,they just haven't worked out how much wastage is incurred with liquid oxygen as once you fill a flask whatever is unused is lost over 24 hours as it dissipates,and I don't believe the respiratory team have factored this in at all,oh dear 2017 has started so badly and I'd been so full of hope for a better year this year,I think I'm having a bit of the poor me's,just feeling tired of being tired and my head is so full of things I'd love to do but at the moment just getting out of bed seems like a small victory,and I can't stand that I'm feeling like that,I'd been trying so hard last year to push through all the infections and get on with life as best as I could,but it's just feeling so hard right now,sorry I'm on a bit of a down but hopefully if by next week I still have this infection ,I'll get admitted and get back on my feet.

All the best everyone and hope you're all feeling well,or as well as you can lol..it's a funny old life but at least we're still living!!!

[Hidden]

Hi Stitcher, well orally they do seem to be throwing lots at you but not getting anywhere. I am presuming that they keep doing sputum tests to find the offending bacteria? Taz only worked for a few days for me also. I am surprised that they haven't tried meropenem or gentamycin. You would need to be admitted for gentamycin because they have to test your blood every 48hrs for kidney function. It is an old drug but works like domestos,, especially on pseudomonas. I'm afraid that the inhaled colomycin only tends to keep the levels of psuedomonas down once it has been knocked on the head by oral or IV drugs. I'm sorry, all of this just leaves you worn out. I do think that they need to have a closer look for the bug which is laying you low. Good luck.

[peege]

Oh you poor thing! I'm so sorry for what you've been going through for so long. I'm not qualified to offer you any guidance, only support and empathy.

Can you give the BLF help line a call. They have specialist nurses who can offer you guidance on what you can do to move things further. 0300030555 UK office hours 9-5.

Hopefully other members with O2 experience will be along soon.

If I were you I'd be taking a high dose of probiotic capsules (from Holland and Barrett or on line. I get mine, Freepost from Healthspan). Id also drink effervescent Vitamin C 1000mg with zinc 3 x daily to boost your immune system to fight the bugs. I get these from Boots or any supermarket usually 3 for the price of 2. I put these in a pint of water so it ensures I'm drinking plenty. Lemon&Lime are actually pleasant.

I really hope you have good friends and relatives nearby to support you. Keep us posted won't you and wishing you all the very best for an end to this. Peege

[Stitcher48 in reply to peege]

Empathy just perfect,just what I need ,people who understand what it's like to live with,thank you 😃

[sassy59]

I do hope your health improves soon and you get treatment that works for you. It would be nice for you to be able to get out so wishing you well. Xxxxx

[Stitcher48 in reply to sassy59]

Thankyou😃

[cofdrop-UK]

I am so sorrry these nasty pests and constant abs are making you feel so very low. I empathise. Did Meropenem IVs at home Nov and although my last lot of IVs gave me 3 months grace, I cultured Morax within 13 days and just getting over strep p. I hope they sort you out, even if that means going into hospital - it must all be so draining for you.

Get well soon lovely and let us know how you get on.

love cx

[Stitcher48 in reply to cofdrop-UK]

Thankyou 😃 For taking the time,to reply,

[Liz-F49 in reply to cofdrop-UK]

So interested to know how you did Meropenen at home . I have only been given it in Hospital and thought that was the only way.

Thanks

[cofdrop-UK in reply to Liz-F49]

It seems to be a post code lottery. IVs are only available in some hospitas as an in patient. Some have them at home with the community coming in to administer them.

I am lucky - we have an adult cf unit and I am under the care of very proactive consutants within the Bronchiectasis Service. You have to have your longline and your first 2 doses at the hospital and then you need a removal van as there is so much stuff to take home with you. I just clear the sideboard and lay everything out in order. Incidentally Taz is no longer on licence for use by patient at home. It's a bit scarey at first but you soon get used to it and as long as you concentrate and everything is kept scrupulously clean, it's fine. Much better than being in hospital, unless you feel so poorly you find it too much to do.

My consutants are tryng to get funding for their patients on home IVs to have them delivered and pre-filled flushes, Heparin and abs, although you can't pre-fill Meropenem as it has to be used within half an hour of mixing.

Half way through course of IVs one of the cystic fibrosis nurses comes out and does spirometry, weighs you, takes sputum sample and blood.

On completion you go to the hospital taking back sharps box etc. and have your line taken out and are then seen by the docor.

love cx

[Liz-F49 in reply to cofdrop-UK]

As far as I know we only have Tazocin with Hospital at Home team who visit on a daily basis and take obs and change infusion. It maybe poss for CF patients here but

[Liz-F49 in reply to Liz-F49]

Sorry, messed that up!

Not for me with Broncheictasis and other stuff. Just such a good idea to stay out of hospital and reduce the risk of cross infection and improve patients morale by being at home. Thank you for such a detailed reply and hope you stay well at home

E x

[cofdrop-UK in reply to Liz-F49]

That's a shame Liz. Your right it is much better if you feel well enough, are able and comfortable with doing them and it frees up a bed. Win win.

I only had one hiccup when I flushed 10ml, put in the Meropenem and for some reason went straight to the Heparin. Realised quickly and took it out, cleaned up and flushed the other 10ml and then remainder of Heparin. Rang the CF nurses to check it was ok and it was. We can always get hold of a cf nurse or we can ring the cf unit.

There are changes happening in the bronch world and I hope you will be able to do them at home very soon. At least if you have the community coming in it's better than being in 5*.

love cx

[Stitcher48 in reply to Liz-F49]

Hi ,Liz just wanted you to know that I've had 4 rounds of tazocin at home with the rapid response nurses coming to the house to give the IV,I had a longline first 3 times but the last time I was told that the ph level of taz made it unsuitable for the longline which was a bit of blow as I have terrible IV access. I was however still allowed to go home but it was a bit of a nightmare getting access,sometimes I was having my IV changed twice a day and that would mean a search for a vein that would not collapse as soon as it was flushed,thank goodness I have no fear of needles and I was able to stay in my own home and the nursing team that comes to the house are just fantastic,they have asked me though if I have to have home IV again to ask the hospital to put in a picc line and I was wondering does anyone have any experiences of this,does it make it easier,as my last fourteen day treatment I had over 20 IV canulae as the veins were so poor,and have to admit that the one in my index finger just seemed a step too far (although it lasted the longest at 2 1/2 days) but it affected my ability to care for myself and played a part in a fall as I was so afraid of dislodging it I didn't put my hand out to save myself,then had a bout of cellulite in my leg as a result of the fall and five months later still have a lump on my shin -(haematona under the skin)...I am the proverbial disaster area and think I should wear a danger sign ,if it can go wrong it will, lol....well trying to,better to laugh than cry and my fall was ridiculously funny ,just a pity about the after effects...

Hope you be able to have treatment at home as it is so much better than hospital and the risks of cross infection are reduced so much and it's just more comfy at home.

My best wishes to you and everybody ,just keep breathing guys xxx😃

[Liz-F49 in reply to Stitcher48]

Hi Stitcher

Sorry you've had such a tough time. I have a picc line and they're brilliant. Much better than a long line which used to make my shoulder ache. The vascular nurse at my local hospital puts them in and as I too have difficult veins when she put the last one in 4 weeks ago she, and the Nurses from Hospital at Home, told me to keep it until the end of the viral season which I will do. It has to be flushed once a week and the district nurse does that while I'm still at home or I could go to the surgery if I'm up to it. The Tazocin I've had comes once a day in a plastic bottle with its own pump and is attached to my picc line and infuses 24/7 until empty next day when nurse comes back with another bottle and does obs etc. Any problem you call them or ambulance straight back to hospital. It's a great scheme but not available everywhere I gather. Awful to be a pin cushion you poor thing. Try and get a picc. A nurse told me the other day she thought you could keep it for up to a year!

Best wishes

Elizabeth

[Stitcher48 in reply to Liz-F49]

Elizabeth that sounds great and an answer to my prayers,just a matter of persuading the hospital to do it for me the next time I need admitted,I'm just waiting on the latest sputum results but as I was still on antibiotic when I left it in the labs I think I'll do another tomorrow to be on the safe side,I just feel so very tired and it's so frustrating as in the summer I'd gone through pulmonary rehab and was making such improvement on my stamina and walking distance,now since September I feel as though I've gone so far back,it's just a pain in the behind , pardon the language,

Hope you are feeling well and thanks for the reply,it sounds like an answer to my prayers,just persuading the hospital now!Thankyou so much for taking the time to reply,Julie,😃💐💐💐

[Liz-F49 in reply to Stitcher48]

Hi Julie

That's funny I did Pulmonary Rehab in Oct/ Nov but was not all that well. I was all set to join the maintenance group but ill instead and would up in hospital! Found out this morning I have another bug now😡But hopefully sensitive to the antibiotics I'm on. Hope you get a picc line.Good luck and keep us posted.

Elizabeth 🙋

[Watfordgirl]

Hello Stitcher,

I'm really sorry you've been having such a rough time for so long. You've had some great answers and I can't add any help or suggestions to them, but I am thinking of you and hoping they'll be able to turn things around for you very soon.

You're right, it is a funny old life. I hope yours gets a lot better. Do let us know how you are. Sue xxx

[Stitcher48 in reply to Watfordgirl]

Thankyou for your reply😃

[Pam1952]

Just to say that I'm so sorry that you've had such a long struggle. I hope that you get the treatment you need very soon. Good luck with it all, I will be thinking of you.

Take care.

Pam XXX 🌹🌹🌹

[Stitcher48 in reply to Pam1952]

Thanks so much😃

[Liz-F49 in reply to Stitcher48]

Just to let you know you're not alone and I'm sure lots of us, including me, are in the same boat. Fighting these damned bugs🙁. Must stay positive though it's hard . Spring is on the way and I have daffodils coming up in my garden and lots of buds on my lilac bushes. Hope you feel better soon.

[Sheilab123]

Hi Stitcher, not much consolation I know but I felt much the same all of last year so you are not alone. However-dare I say it- I have finally started to feel better, it's a good feeling to be looking forward to the future again and hope you will soon feel the same. Think it's a bit of a lottery as to what meds they treat you with, hope they hit the right one very soon. Cos it certainly does get you down after a while, sure you will come back smiling soon! Xx

[Stitcher48]

Good to know Sheilab 123, terrible this feeling of it getting the better of me,so much going on this year and I really want to be well,my daughter is getting married and I just want to be able to be there for her and not have her worrying about me. I want to be able to have at least a wee boogie at the reception ,without passing out lol.😃

[Billiejean_2]

Hi Stitcher, sorry to hear you're having such a bad time and for so long. It must feel like you're never going to be yourself again but please take heart from the replies.

This time last year, I was In the fourth month of one of those protracted bad periods and I really thought I could never get back from there. It took two more months and another fortnight in hospital before the infection was knocked on the head. From then on I went back to my usual pattern of good and bad periods.

But I remember how awful it felt and how you must be feeling now. I'm sure you will eventually get over this infection too, so take heart and don't give up.

[mikefa]

so sorry your having a tough time,good luck with meds etc.

[Buzzytruk]

Am so sorry to hear what you have gone through you poor love. You have made me feel ashamed for complaining about 2 lots of antibiotics and steroids.of late. Hoping you start to feel better soon.

Jo.