This is my 4th Pik. line in less than 10 mos. Three weeks this time w fanny pack and medicine ball pumping continuously for 22 hrs a day.
Still non stop mucas 24/7. though had. medicine so far 5 days. Is this normal? My life is reduced to trying to wrap and rewrap my arm to take a shower w out getting the pik line wet.
Had to go. back to UCD twice so far as it got wet,had to change dressing.
Nausea, weak, diahrea.
The. drug is Cephladizine I think.
Any advise appreciated.
The only way i can get the mucas out of my lungs twice a day using the AFFLO vest and then saline nebulizer is to shower. Does anyone else have a better solution?
Pls write me as i am really down.
Ucd said it was rare for someone to have to have a pik 4 x's in a few. mos.
Yet my immunologist said due to my compromised immune disorder he does not want me to. have a PORT, yet cancer patients w no immunity have them.
I have Broncheictasis and Compromised Immune Disorder and two Rs: one is an Immunologist the other is a Pulmonary Dr. Both are excellent.
Any advise appreciated today.
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Lapis5
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I’m so sorry to hear you are still suffering. I’m not sure how it works where you are but this is how it went for me. I was referred to a respiratory doc that specialises in Bronchiectasis. I had a pic line in for two weeks. I had ceftazine 2g three times a day together with taxocin 4.5g a day for 14 days the went onto nebulised colomycin. I’m still using colomycin over 5 years later. Did you say you can’t get this? My doc said hit it hard to start with and then the nebuliser to keep it at bay. BTW you can get atm covers from Amazon for the shower. They’re really for casts but I’m sure they would work for you. I would expect to get some relief after 5 days. If you are having the same abx each time it suggests you have some resistance to it. I am immune deficient too. X
Are u getting sub q or IV Gammagobulin for your immune illness? I got it for 20 uyrs till Medicare cut me off for the last 5 yrs., I just got back on it but slowly working up to bigger does in hopes it stops the constant Pseudomonas flare ups. today is the 5ht day of iv drugs , yesterday non stop sneezing caused my mucas running out my nose and feeling cold. NO slleep lasgt night due to b ack pain and periferal neuropathy in feet. gabapentin did not help much nor Tramadol. had 2 Back surgeries in 2015 which have worn off. al this sitting and useing ahd veest and nebulizer and couch potatoe living inside is nogt helping. I got variouos shower covers but non really work. I want a PORT. but wil have to. fight to. gegt one. 4 iv pik lines in less than a year is not normal. u only had it once?
I have 7grams of hizentra that I inject myself weekly. I started on 10 and my dose is slowly reducing as my ig increases. I had one lot of ivs before they knew it was pseudomonas, then the two weeks of double abx before going onto the nebuliser. Since then just one lot when I had pneumonia. I haven’t had any flares of the pseudomonas since starting the colomycin. They were talking about fixing a port because my veins weren’t good but I’m not sure my immunologist would like that. I also have spinal stenosis and take nortripyline for the pain in my legs. I take it a couple of hours before bedtime so it helps me sleep. I know how miserable you feel I’ve been there and it’s not good. I should also say that I attend a specialist clinic for my autoimmune disease which is 70 miles away. I receive mostly excellent care, I have a respiratory doc and immunologist there. I also see an ENT doc at another hospital. The specialist bronch doc and his team are based at my local hospital. This is not necessarily how it would be for everyone here. I hope some of this helps you.
Today they rxed me the Colestin that u take and no more antibiotics even tho still infected. Pik comes out tomorrow. Can u tell me if u nebulize 3% saline first and then do the drug w saline in it also. So two times nebulizing saline?Thank u
I was told that Colestin works better if you kill off the pseudomonas first with the iv antibiotics. I’m sorry you haven’t been able to achieve that. I had a tight chest when I first started. They call it a bronchospasm, so I nebulise salbutamol to stop this and budesnide (my nitrate oxcide levels are slightly up). I then mix the colestin (mine comes in powdered form) with the saline and nebulise that. Having said that my respiratory doc said I could chuck it all in together but the colestin takes a while to dissolve to I get on with the rest while this is happening. I do this twice a day. I had to do the first nebuliser in hospital to make sure I didn’t have any reaction to it. I have everything crossed for you. I have been where you are and know how miserable it makes you feel. 🤗
I did have 2 weeks of IV antibiotics. But the culture says i still have PSeudo plus another infection. Saw a new Infectious disease Dr. and he said no more antibioitcs for now. and my PUL dr agreed w him. Odd. But did u alsso nebulize originally w saline twice a day to clear your lungs? and r u stil doing this now?
I have never used saline on its own. Yes I still do this now. I’ve been doing it for over five years. As you know pseudomonas never really goes away it lurks in the corner and comes out to party when it’s most inconvenient which is most of the time. Whenever I ask the question about reducing it I just get told not yet !
So I was told to use 3%. saline in nebulizer twice a day w ocscillating vest to clear my lungsl. u never did anhy of this?? How do u clear your lungs? just the pep devise?
I’ve never used just saline. I don’t have any mucus now. When I was getting one infection after another I was using the active cycle of breathing to get rid of it. The vests aren’t used much here.
I haven’t had bloating or swelling from the immunoglobulin. My highest dose was 10 grams. I do sometimes feel sore afterwards and have the odd bruise. Hopefully this will improve when you go down to once a month. Make sure you pinch a lump of flesh to put the needle into to.
I don’t do any lung clearance. I have only had one infection since I started the colestin and immunoglobulin. That was pneumonia and I was in hospital. When I was getting regular infections I used active cycle of breathing as taught by physio.
Tried Colistin today. Had hard time drawing up saline in those plastic twist top things.. is that what they gave u. or did u get a vial w the saline in it?What times of day do u do this treatment? My dr wants me to cllear my lungs as i normally do w saline, shower to get it out then do the Colistin. it is a lot of work
My chest is tight now too.
how long before u see a difference in your health??
I am getting very swollen and bloated from the sub q gamma. have had 4 doses so far a week apart. starting in oct it wil be once a month. 20grms but is your stomach swollen too and painful for a few weeks after these injections?
Think I.had reactionto Nortriptaline, don;t remember what tho. long time ago Does it really help that much? what about Gabapentin? did u ever try it?I am getting Hizentra sub q, startede at 7, one week later 15 and this fRiday will. be 30. Then monthly not sure what dose.
I know my immunologist is against the port but since i believe allthis is just going to be bad i really feel i need one. the RN techs at UCD who put the pik in say in their opinion i need one.. 4 Pik lines in less thatn a year is too many and that the risk of infection with either pik or port is the same. only need to be hospitalied. to remove it if infected,wheras w pik if infected, they remove it out patient.
so u do not inhale saline in neb?
What is your immune diagnosis? primary immune disorder? my subclasses are way way too low, cannot fight off infections.
do u have an adjustable bed? mine broke last night so laying flat caused mucas running nose adn mouth on my face. hope toget it fixed in a week. so expensive.
I have spinal stenosis too.
How old. r u I am 78, have had Broncheictasis for 4 yrs now how about u?
What were the double antibiotics u took, both in Iv at same time??Did not get rid of Pseudomonas???is it colonized like mine? So the Colo.. ;works. best for u. is it easy to use, once a day?
the Nortripaline helps me sleep. Before I had this the pain from my calves were keeping me awake. I had pregabalin some years ago. Only took it for a couple of days as I couldn’t tolerate it. The double antibiotics were both done via iv. When I finished them I felt better than I had in years, so I think the pseudomonas had died down but I’ve had nebulised colomycin since to stop it coming back. I use it twice a day. I’ve only had one infection since and it wasn’t pseudomonas. I mix the saline with colomycin as it comes in a powder form. I also use salbutamol at the same time. I have an autoimmune disease called vasculitis. I was given rituximab to damp down my immune system but it wiped it out as it does to some people. My Bronchiectasis diagnosis I’m told is a result of all the sinus and chest infections I had after being immune suppressed. I don’t have an adjustable bed. I do Pilates to help with my back and I find a tens machine helps. I had another epidural in my back last Monday but can feel the effects wearing off already. I’m waiting to see a surgeon but know that won’t happen in a very long time. Cofdrop-UK can help you more with the pic line/ port stuff as she has really been through the wringer with this and knows more than the doctors do. I’m pleased that you got hizentra. I was told when I got it that it is one of the more expensive ones and one of the best. I have 7mg weekly which I do myself at home. BTW I also avoid too much contact with my young grandchildren if they have colds as I think this has been the cause of many of my infections. I’m 66.
i have had midlines in a short space of time from each other due to exacerbations, as I cannot tolerate cipro or any prophilactic meds then the only option for me is home or hospital IV. I had a midline in for a year (covid times and in my opinion far too long). I now have a port and it is so beneficial - you can crack on with meds. I hope they can come to a satisfactory decision re a port. I have pit a link up for a brilliant limbo to cover your pic to shower. I used mine for the full year. I have another now. They are amazing and watertight. You have to remember that one end of the tight cuff is a little larger than the other. No more faffing with useless cling film. A good friend from the lung conditions community first told me about it and it’s good to pass on.
I really appreciate you writing to me as I feel lost with this. I am 78 living alone.Here is my regime daily, pls tell me if u think I can do it differently and feel better . I use the AFLo vest along w saline in nebulizer then shower to really cough it all out. I do this twice a day. It is exhausting and have to wrap the Pik every timne , am using a plastic cast over the hospital gave me but does not work well. NOONE I have spoken to showers after their treatments but it so far is the only way I can cough the most of it out. I am on day 8 of IV Cephla... antibiotic and have 7 more days to go or even another week they say,. I am exhausted today sicne i cand't sleep well and going to take mild sedative tonight.I really feel I should have a port but my immunologist says due to my immune disoder he does not recommend it due to chance of infection, but as i say the techs thaat put the piik in do not agree.
How are you managing day to day? Are u no longer working?
Have you found anything that makes you feel better?? after the flare ups of Pseudomonas are over?
lapis I too live alone amd I am 74. I note that you live in the States where I believe the vest is more widely used. Although it is sometimes used in the UK for CF, I only know a few people who have a vest. Nor do I know of anyone who showers to do lung clearance. Many, including myself use a PEP and do one of the lung clearance technoques such as postural draining with percussion, Active cycle of breathing, autogenic or a combination. We are usually referred to a respiratory ohysiotherapist. I understand in the States these are called Respiratory Therapists.
Sorry you are having a rough time. It is quite normal with bronhnto be on IVs for 14 days.
Re: respiratory therapist. IT would be impossible to see one daily. are u able to clear your lungs of mucas TWICE A DAY satisfactorily using postural drainage and some kind of percussion living alone as you do?
we don’t see physios every day in the UK. We see them to learn lung clearance techniques and we then do them every day ourselves. I agree it is a high management burden but worth doing to keep the status que. we only had postural draining when I was a child and when I was old enough I have always done my kwn lung clearance twice a day and when I was working 3 times as Imwas so worried about having more time off. It becomes routine. I have since learnt different tecniques which are beneficial when you have other health comditions.
I will out up a li k for you whi h will hopefully answer maby of your questions.
Btw this year I have done an IV course at home, had I vs in hospital in May and in hospital again in July and winter hasn’t started yet, it’s a shame for us but some unfortunately do get more than 1 exacerbation a year.
Just saw the sputum culture results today. Still have PSeudomonas and also now Stenotrophomoas Maltophilia. Have had this before but not w the PSeduo. have u had thiss and what was done to eradiacate it? Thank u plos get back to me. So the 3 weeks of Cephadrine did not work iv.
Thanks for writing again. and the link. Do u keep getting PSseudomonas tho like I am?the iv meds dont tamp it down for more than a few weeks now someone else nebulizes Colomycin, do u do this?
Saw new Dr. an Infectious disease one. He is very young. n ot srue he is very good w our illness. He sai dNO more antibiotics now. even tho the culture still shows PSeudomonas and also another infection. the pul. dr. rx's Colestin, Iwill try it. but bet it will causes a lot of bronchial spasms. is that what hjappened to you?So do u have any symptoms now and mucas?
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