On ivs 10 times so far this year..what now...

Mallymookcf

New member
HEY GUYS!
ok so im not sure what needs to happen at this point, or if there are any options left. i hvae been on 10 rounds of iv antibiotics already this year. that is averaging once a month!!! i have a port so it isnt as troublesome to start IVs when needed, but is this my new way of life??? i feel better when i am on the IVS so i know the meds are working, and my bugs are not resistant.... right? but as soon as i finish a 2 or 3 week course, i start to decline again. about 1 week later i am calling doc again. then they resort to prednisone, which only helps the first few days im on it. then back to Ivs almost immediately after the 2 weeks of prednisone. tonight is day 5 off prednisone and about 3 weeks out from last round of IVs...i am running a 101.0 fever and i feel awful. my mucus production is unreal!!! my chest is crackling to the point others can hear it when i breath! I dont know what to do anymore. i feel like im just trying to buy time until the vertex or something better comes along to make my lungs feel a little bit better than they do now. my qualirty of life is starting to really be affected, as well as mentally and emotionally affecting. i do vest, ocapella, hypertonic, pulmozyme,cayston/tobi alternate, albuterol, advair, etc... so im not negligent by any means. any advice???
God Bless
Mallory(L)
 

Kyle O'Neill

New member
That's how it is for me now too, except i've been like this for almost 2 almost 3 years now. It's frustrating, I know. I don't really know what advise I can offer. I just wanted you to know you're not the only one.
 

Mallymookcf

New member
Bless your heart..maybe someone will have some good advice for us :) the last 2 1/2 years have been the worst for me too, been on more IVs the last couple years than any other time of my life. But this year has taken the cake by far!
Prayers for you!
 
G

giantsfan91

Guest
I definitely feel for you guys because I experienced a cycle like that last October-March where I was on IVs 4 times during that period. One thing that I can suggest to you guys if you aren't doing it already is treat nutrition as important as you do breathing treatments. From investigating on here, talking with other CFers, and other websites, it now seems very obvious that when you get caught in a cycle like that it's because your body is severely depleted of essential vitamins and minerals from the tough IV meds and some of the breathing treatments we take and the bugs basically just hide in your lungs while you're on IVs only to come right back out when the meds are out of your system. After my last IV cycle in March I started supplementing with calcium/vitd3 (citracal), magnesium, source cf multivitamin, and a NAC supplement, and I definitely think that has kept me from needing to go back on IVs. PM me if you want more info on supplementing.
 

sspiess3

New member
Hi Mallory...I don't post on here that often, but this came up on my facebook feed and I just couldn't believe how insanely close it is to me... Since about Feb 2012 I haven't been home for more than a month...I am constantly going back into the hospital to get back on IVs (I have MRSA, pseudomonis, and ABPA). They are pretty much resistant to everything since I've had them since about age 12; my only antibiotic choices have also been Vanco, Tobra, Merrem, and Zosyn. I remember when 3-4 weeks of IVs would leave me feeling great for six months to a year... Now I feel "decent" (as decent as 19% FEV1 and 5 L of oxygen can be) while on them (finishing up home IVs right now on Monday) but within 5 days I am back in bed with the horrible crackling and fevers you speak of. My doctor recommended double lung trx back in March, which I refused and now I don't even think I would be eligible... Anyway, I totally feel for you and wish there was something we could both do... Also, I guess I would like to know if anyone who reads this who has lost someone from CF could let me know honestly what I should expect... How close am I to RIP? How long with this awful cycle last? What is the chance I could pull back up at all? And lastly, how much worse will it get???

I do the same rigorous regimen of medicine as you describe, so I don't see what I could do to help other than just rest at home and do the best I can... I used to be super active--college student, traveler, draftsman, car salesman, eagle scout, camper, hockey player, step-dad, concert-goer, exercise-buff, boyfriend, who lived on my own... I now live with my parents (thankfully!) because I can't manage to drive (got to the point where I would pass out from coughing and nearly wreck) and they do all the small stuff like get groceries and help me get to the weekly Dr appts..

Anyway, glad to read your post and hope you start to improve. Look forward to anyone's advice...

-sam
 

JustDucky

New member
I have been on several rounds of IV's this year too, with a couple bouts of sepsis thrown in....I really feel for you, all of you. It is very frustrating when you start to feel so crummy soon after IV's are done. I have found that if my course of IV's isn't long enough, I decline quicker so maybe you aren't on them as long you should be. 2 weeks used to be the magic number for me, but lately, at least 3 weeks on IV's is the norm.. If you haven't done so already, maybe get ID involved, perhaps you need a new combo of IV's, or rotate them around. I have found that if Merrem worked for me one month, the next time I need IV's, it is no longer effective and they need to switch to something like Zosyn. I grow out some pretty resistant bugs, mainly PA, achromobacter and steno as well as staph. It gets tougher when multiple bugs are involved, especially if they are resistant as well..

Other than the above advice, I don't know what else to say except that I pray that this cycle breaks for you., that something works and you remain IV free long enough to enjoy life a bit better. Myself, I have lost count on the number of rounds since November, it has to be easily 7 and I am due for more very soon (just had port #3 put in so that we can start them up) Hang in there, sending hugs to all of you along with prayers. I know how helpless and frustrated you guys are feeling..

Jenn 40 wCF
 
L

lizlas

Guest
Hi Im sorry to hear this!!

Has anyone tried Chloraphenicol? It s an older IV drug, but penetrates deep into damaged lung tissue where bacteria hide .....It has the potential to cause Aplastic Anemia down the road (type of blood cancer) ......it is still used when other Ivs fail. Perhaps it is worth talking about it with your Dr.

Lizlas
 

epicurus

New member
Glutathione

Hi, sorry to hear about the constant I-V's. That can't be much fun. I had a phase a few years ago where I needed lots of i-v's (including vanc for MRSA) and constant oral antibiotics and then I had a serious bout of pneumonia. I also had an immune system 'meltdown' with systemic urticaria and swelling which was very scary. This was probably as a result of all the chronic infections. I have managed to regain my health and now I haven't required I-V's for 3 years. In addition to following a very healthy diet (lots of green vegetables, eliminate sugar + processed foods), there is a supplement called Cellgevity that has helped me enormously. It contains riboceine which works by increasing intracellular glutathione levels, similar to what NAC does, but in a much more powerful way. It really took down all the inflammation in my lungs. Now I don't even need nebulised or oral antibiotics any more.
Glutathione is very important in the lungs and creates a protective layer in the epithelium. In CF this glutathione layer is depleted, leading to a chronic cycle of infection and inflammation. (Interestingly my dad, who has had bad asthma for 30 years, has also been taking Cellgevity for a few months and he has now been able to stop most of his ventolin and steroid puffers!)
There is more information about the Cellgevity supplement here: www.glutathione4cf.com
 

PinkPigg

New member
Hi Mallory,

That is certainly a tough spot to be in. Have your doctors discussed with you the possibility of transplant? I don't want to freak you out but just want you to consider all the possibilities.

It's much easier to get evaluated early rather than late in the game.

Peace,
Steph

P.S. WELCOME TO NEWBIE KYLE!!!
 

Mallymookcf

New member
HEY GUYS!,
Thank you all for the advice. i will discuss these options with my doctor on thursday. they want to admit me in the hospital rather than let me do home IVs. I think that is their way of not knowing what else to do, but who knows it may make a big difference... also my pfts/FEV1 was 81 this last visit, so i havent even considered the transplant route. For my condition and for my terrible ct scans and x-rays, the docs are all astonished that my pfts are still pretty good. I Praise God for that! the docs always say they would never think that the lung scans were the same patient as the pft numbers. sorry if anything is mispelled, doing my vest and cant proof read it...haha it s too shaky :)

Mallory
 

kyeev

New member
Hi Mallory,
Here's a couple of suggestions from my experience.
1) I've had a similar experience with recurring chest infections, taking my standard IVs for 2 weeks, then lasting 2 or 3 weeks before needing to go back on IVs again. My doctors seem to be stuck in a grind of ONLY using their stock of standard antibiotics e.g. Ceftazidime (fortum), Tobramycin, Meropenem, Tazo/pip, Cipro etc. So through research and reading these forums and a little luck, I've come up with antibiotics that my bugs haven't seen before, suggested them and luckily my doctors agreed.
I've switched from ceftazidime to Cefapime. Cefipime has been smashing my bugs to pieces for the last 3 years. I literally went from 150 ml of sputum a day (that is a lot) to about 10-20 ml. And the time between IVs went from weeks to maybe 2 or 3 months (of course phlegm volume came back til next lot of IVs).
Now, my bugs are getting used to the Cefipime, and I haven't been so well in the last 6 months, so now I've tried Aztreonam (which I'd never taken before) and that has smashed all the bugs again! All the phlegm has disappeared. It is a weird feeling, when you're used to coughing up 150 ml a day.
I have about 35-40% FEV1 by the way.
SO there must be some antibiotic out there, you haven't tried.
There are definitly a few more antibiotics related to ceftazidime, like Cefpirome (CEFROM), that I'll probably try next.

2) There is a new energy drink I take called FortiSip which has 300 calories in about 150 mls. It literally takes 3 gulps to drink it. Loads of flavours, all taste horrible, but so easy to get an extra 1000 calories a day. I drink 3 or 4 of em in the morning and wash it down with a cup of tea.
I mean, I can't see how I won't be able to put on as much weight as I want with these. There are so many calories in the things.
 

chelsie882003

New member
Hi Mallory...I don't post on here that often, but this came up on my facebook feed and I just couldn't believe how insanely close it is to me... Since about Feb 2012 I haven't been home for more than a month...I am constantly going back into the hospital to get back on IVs (I have MRSA, pseudomonis, and ABPA). They are pretty much resistant to everything since I've had them since about age 12; my only antibiotic choices have also been Vanco, Tobra, Merrem, and Zosyn. I remember when 3-4 weeks of IVs would leave me feeling great for six months to a year... Now I feel "decent" (as decent as 19% FEV1 and 5 L of oxygen can be) while on them (finishing up home IVs right now on Monday) but within 5 days I am back in bed with the horrible crackling and fevers you speak of. My doctor recommended double lung trx back in March, which I refused and now I don't even think I would be eligible... Anyway, I totally feel for you and wish there was something we could both do... Also, I guess I would like to know if anyone who reads this who has lost someone from CF could let me know honestly what I should expect... How close am I to RIP? How long with this awful cycle last? What is the chance I could pull back up at all? And lastly, how much worse will it get???

I do the same rigorous regimen of medicine as you describe, so I don't see what I could do to help other than just rest at home and do the best I can... I used to be super active--college student, traveler, draftsman, car salesman, eagle scout, camper, hockey player, step-dad, concert-goer, exercise-buff, boyfriend, who lived on my own... I now live with my parents (thankfully!) because I can't manage to drive (got to the point where I would pass out from coughing and nearly wreck) and they do all the small stuff like get groceries and help me get to the weekly Dr appts..

Anyway, glad to read your post and hope you start to improve. Look forward to anyone's advice...

-sam[/QUOTE

Hi my name is Chelsie, im 24 and I have CF, for the past yr ive been feeling like crap as well. My FEV1 is 42%. I live in Albuquerque,NM. I just lost my brother to CF on September 27th 2012. His FEV1 was like 9%. He wasnt qualified for a double lung transplant. Due to a heart anorism and seizures.he was in ICU for 2 werks on a ventilator, and on 4 diffrrent antibiotics. But this lung infection he had was a really hard infection to get rid of, it was already going through his blood streams. Idk what the infection was. But all I gotta say is take it step by step, do what u gotta do to take care of urself,, if u got to go to the hospital once a month or every two months, then do it. Get a membership to a gym. Work ur lungs out, do 4x treatments a day with ur vest. I do 4 albuterols 3 hypertonic 2 pulmozyme and im on my month for cayston which I do 3 a day as well. So in all im doing 12 treatments a day. But im also a diabetic so its double the work for me. Drink protein shakes to gain weight if ur losing alot of weight from being sick. But u can do it.
 

rmotion

New member
When all else fails look to nutrition.

I found that when I do A/B we get the rebound effect, you kill the bad bugs and the good ones too.
1. Nutritionally everything we are told is backwards - it is not quantity but quality.
Look for some of my other posts here - g-tube advantage under rmotion

2. You need to go on an anti inflammation diet, it is gluten free, sugar free and dairy free.
3. Dairy free I notice that when I eat dairy the congestions just blooms, especially after a tune up.
3. Sugar the bacteria feed on it so limit - no soda and junk food
4. IF you have bowel problems gluten is the culprit.
 

rmotion

New member
Yeah this is key - what kind of NAC do you take the PharmNAC?

I definitely feel for you guys because I experienced a cycle like that last October-March where I was on IVs 4 times during that period. One thing that I can suggest to you guys if you aren't doing it already is treat nutrition as important as you do breathing treatments. From investigating on here, talking with other CFers, and other websites, it now seems very obvious that when you get caught in a cycle like that it's because your body is severely depleted of essential vitamins and minerals from the tough IV meds and some of the breathing treatments we take and the bugs basically just hide in your lungs while you're on IVs only to come right back out when the meds are out of your system. After my last IV cycle in March I started supplementing with calcium/vitd3 (citracal), magnesium, source cf multivitamin, and a NAC supplement, and I definitely think that has kept me from needing to go back on IVs. PM me if you want more info on supplementing.

Yeah this is key - what kind of NAC do you take the PharmNAC?
 

Tisha

New member
Hi!
I've been there, June 2011-June 2012 I had 11 rounds of antibiotics, 5 of which IV. Multiresistant pseudomonas. But I've added a few things which have made a difference, and since ending the last treatment in early July I haven't had ANY antibiotics (except the regular inhaled ones).

- lavender essential oil, 3 drops. First I inhaled it over boiling hot water with a towel over my head (had to stop during the summer due to the heat), but since a month ago I'm adding it to the hypertonic saline. I checked first and found that Pari contemplates their devices to use for nebulizing essential oils, so it's deemed safe. Lavender is supposed to be reducing the resistance of the bugs so it helps the antibiotic be effective. And it has been! Besides, it smells good and at least with the hot water option, it feels like balm to the lungs. I love it. I started on it around April 2012, I think. With the hypertonic, it makes me feel it less aggressive on throat/lungs.
- for DF508, hawthorn extract helps the CFTR protein work properly. Now that's a very tricky treatment, nailing the proper dosage took several months and I need to keep adjusting it, but it has reduced the overall mucus production. Started on it in March 2012.
- started on Pharmanex IgG Boost in January 2012. It's a colostrum extract that strengthens the immune system. Haven't got a single cold since!! Knock on wood. And the last 10 days I've been in a house with sick people, so it really seems to be working.

I'm not going to say this is "the solution" but by all means, give the lavender a try! It's really cheap and as far as I know has no side effects. What can you loose? :)

Greetings from Sweden!
 

Tisha

New member
PS. Yes I forgot to mention that: I checked the symptoms for gluten intolerance and I had a lot of them. I started on a gluten free diet on May 16, 2012. My digestive system feels great!! No more bloating, no more feeling ill after meals. And since the general inflammation reduced, I think that also must have helped the lung inflammation process.
 
Hi,
I am the mother of a very cool 11 year old who has been going through this cycle for the last couple of years. We just used Chloraphenical for three weeks and my son had the best PFT of his life! He just tested positive with B. Cepacia. We are on IVs about every 3 months. What does this mean for him?
As a mom, I know I have no idea what it feels like, but, it breaks my heart to hear my son coughing through the night, coughing when he laughs too hard or just seeing him so weak. I hate it.
 

epicurus

New member
Yeah this is key - what kind of NAC do you take the PharmNAC?

NAC (N acetyl cysteine) works by increasing our glutathione levels, which is a good strategy because glutathione is known to be severely depleted in cystic fibrosis, leading to the cycle of chronic inflammation and infection. I have been doing a lot of research into glutathione and discovered a far more effective supplement than NAC to increase systemic glutathione levels, called Cellgevity, and it has made a huge difference to my health. See www.glutathione4cf.com for more details.
 

epicurus

New member
- lavender essential oil, 3 drops. First I inhaled it over boiling hot water with a towel over my head (had to stop during the summer due to the heat), but since a month ago I'm adding it to the hypertonic saline. I checked first and found that Pari contemplates their devices to use for nebulizing essential oils, so it's deemed safe. Lavender is supposed to be reducing the resistance of the bugs so it helps the antibiotic be effective. And it has been! Besides, it smells good and at least with the hot water option, it feels like balm to the lungs. I love it. I started on it around April 2012, I think. With the hypertonic, it makes me feel it less aggressive on throat/lungs.
- for DF508, hawthorn extract helps the CFTR protein work properly. Now that's a very tricky treatment, nailing the proper dosage took several months and I need to keep adjusting it, but it has reduced the overall mucus production. Started on it in March 2012.


Hi Tisha,
Great idea about the lavender oil! Lavender oil is a potent antibacterial so I can see that it would be beneficial!
Very interesting too about the hawthorn - how do you take it?
Thanks!
 
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