Country Concert for Cystic Fibrosis

Wednesday Night Chat !

beleache — Wed, 30 May 2012 12:43:02 +0000

Originally posted in Cystic Fibrosis - Adults

Hope to see you in chat tonight joni

IV antibiotics periodically or as needed?

jeana — Wed, 30 May 2012 12:43:02 +0000

Originally posted in Cystic Fibrosis - Adults

It seems there are two distinct opinions of CF doctors as far as PICC line/port antibiotic treatment.

Camp 1: Treat every CF patient with IV antibiotics every 6 months (or every year) whether they have low PFTs or not.

Camp 2: Treat with IV antibiotics when CF patient has a substantial PFT drop (like 10% is what my current doctor does)

Nurse Case Manager through the ins.company

triples15 — Wed, 30 May 2012 08:31:17 +0000

Originally posted in Cystic Fibrosis - Adults

Hi everyone,

I changed to United Healthcare through my husband's employer in January. Yesterday I got a letter from a Nurse Case Manager saying she had been assigned to my case and is available to help me "manage my disease". Ha. It also said she has been trying to reach me by phone, which she hasn't. Neither my husband nor myself have received any calls/messages from them. I guess that's neither here nor there, but I guess the point is the letter just kind of irked me.

Anyway, as we know the insurance companies are all about the bottom line and trying not pay for anything they don't have to. I'm certain this is another attempt to for them to save a buck while trying to make it look like they're "helping". I guess my question is, have any of you worked with a nurse case manager through the insurance company? Has it actually helped in any way? I guess the only possible way I see it helping is by having one contact that I could call when I have questions regarding billing/coverage instead of a different person every time. However, I'm wondering if that's even within her scope of duties.

After 31 years with CF I doubt a nurse with very little to no knowledge of CF is going to help me manage it! I feel like it would just complicate things but I'm tempted to call her and see what it's about. The letter sounded almost threatening, but the way I'm reading it it's an optional service. Please let me know if any of you have thought/opinions or experiences with a nurse case manager.

Thanks!

Arizona–moving

jeana — Wed, 30 May 2012 04:19:34 +0000

Originally posted in Cystic Fibrosis - Adults

Well, I have lived in Alaska for the last 11 years and this year my health has declined a lot. We have decided to move to Arizona, but I keep hearing negative things about lung health and Arizona and now am questioning it.

Here were my arguments in favor of Arizona:

1. The cold in Alaska tends to be really hard on me, so I was thinking heat might be just the thing for me.

2. I also have bad seasonal allergies–molds, grasses, trees, weeds… So my thought was that Arizona has less of these things.

3. And, in Alaska I get a lot less sunshine time, so very low vitamin D levels which inhibit my healing. Again Arizona could take care of this for me.

4. Dry Alaska to dry Arizona–no change (I went on a 10-day trip to Florida and was miserable because the moist climate made me constantly have sinus drippage and coughing. Even Benadryl couldn't dry me up. LOL)

5. More CF doctors to choose from in AZ–only 1 in Alaska.

6. Family in AZ, no family in Alaska.

What I have heard that concerns me: dust/wind bad for lungs, Valley Fever, other allergies

So, anyone have advice, info or opinions? Thanks!

Stocks in the Spotlight Tuesday

fibrosis news — Wed, 30 May 2012 01:45:19 +0000

Originally posted in Fibrosis News

Dow Jones Reprints: This copy is for your personal, non-commercial use only. To order presentation-ready copies for distribution to your colleagues, clients or customers, use the Order Reprints tool on any article or visit www.djreprints.com The drug maker saw shares tumble 11% after revising a report on its cystic fibrosis treatment to reflect … (more)

Oxygen at Night

peterose — Wed, 30 May 2012 00:56:16 +0000

Originally posted in Cystic Fibrosis - Adults

Hi Everyone,

It has been suggested to me that I start oxygen at night because my sats were on the low side. (lower 90's and upper 80's with walking). I am very nervous about it because I have never had to do this before. Anyone that is on oxygen at night, do your sat's ever go up again? Is this the beginning of a decline? What should I expect? I know that I should consider myself very lucky that I have not had to experience this yet at age 50, but that does not make it less scary to me.

Any information would be helpful.

Thank You – Rosie

My aquagenic wrinkling factor test results.

Incomudrox — Wed, 30 May 2012 00:56:16 +0000

Originally posted in Cystic Fibrosis - Adults

So a lot of the time people question me. How do I know what I do is working? A side from increased exercise tolerance, ability to gain weight, no salt formation on my arms, forehead etc on hot days. One true test measured my the NIH is the Aquagenic wrinkling factor of the hands. The standard time for a normal person to exhibit wrinkling is 11 minutes. CF carriers average around 7 minutes, and CF patients around 2minutes. Below is the NIH study:

Aquagenic wrinkling of the palms in cystic fibrosis and the cystic fibrosis carrier state: a case–control study.

Abstract
BACKGROUND:
Aquagenic wrinkling of the palms (AWP) is hyperwrinkling occurring within 3 min of exposure to water. It is associated with cystic fibrosis (CF) and has been reported in a CF carrier.
OBJECTIVES:
To ascertain if AWP is a sign of the CF carrier state and to test for an association between cystic fibrosis transmembrane regulator (CFTR) protein function and time to wrinkling.
METHODS:
Twenty-one patients, 13 carriers and 15 controls were recruited. Hands were immersed in water and time to wrinkling was measured. An analysis of variance was performed with mean time to wrinkling as the dependent variable and CF status as the independent variable. Patients with a time to wrinkling of ≤ 3 min were defined as having AWP. A test of proportions was performed to assess if the proportion of patients with AWP varied between groups.
RESULTS:
Mean time to wrinkling was 11 min in controls, 7 min in carriers and 2 min in patients with CF. AWP was not seen in controls, but occurred in 80% of patients with CF and 25% of carriers. There was a significant difference between groups (P < 0·001).
CONCLUSIONS:
The study demonstrated that AWP is a sign of both CF and the carrier state. It suggests that time to wrinkling decreases with decreased CFTR protein function. Patients presenting with AWP should be offered screening for both CF and the carrier state.

2 minutes

7 minutes

11 minutes.

Moving to a new climate…?

ArmyWife13 — Wed, 30 May 2012 00:56:16 +0000

Originally posted in Cystic Fibrosis - Adults

So we're moving (see my screen name? Military explains it all) and this move will be to a place with 4 seasons, which I am ok with. I grew up with 4 seasons and survived. However, the move after that, which will be next summer (2013), might be to somewhere with a completely different climate, i.e. we might get moved to Florida – land of heat and humidity. Right now we live in the PNW, so basically we get very little heat, humidity or summer for that matter. Ha. We've been here for close to 7 years, with just a little time away for schooling in the middle.

I am a little nervous about this and the husband is more than ready to request elsewhere and pull some strings, but I'd love some feedback from anyone who either lives in that sort of climate or has made a move like that? Just worried I won't be able to breathe as well with the oppressive humidity

Thanks for any input

What allergy medicenes do you take that helps?

carly23 — Tue, 29 May 2012 16:45:17 +0000

Originally posted in Cystic Fibrosis - Adults

So i never knew we can take allergy medicenes..iv always sufferd and been tight chested thinking its just apart of my low fev..my doctor told me to try Clairitin or Zyrtec..so i trie clairitin 24hour 10mg white small tablet…i felt great within 45 mins!..i didnt feel the tight wheeziness and could breathe so much better. Now i ended up reading reviews on Clairitin that concened me..people were saying it made them very angry, depressed, hi anxiety, rapid heart rates, etc. With that being said there were like only two comments that were good out of 50 everyone was sayig the same..now i know we are all different but have any of you had experience with this medicene?..if so how does this help you?..i have also found i much dryer and in the mornings i always cough up some stuff..hould this alarm me?

So i just wanted to know what everyone takes that has helped them and if you tried clairitin did it work for you..

CVS/pharmacy launches in-store fundraising campaign for ALS, cystic fibrosis research

fibrosis news — Tue, 29 May 2012 16:16:15 +0000

Originally posted in Fibrosis News

CVS/pharmacy has launched a new in-store fundraising campaign named Advancing Medical Research, to support medical research and help improve the quality of life for those living with amyotrophic lateral sclerosis and cystic fibrosis .

Vertex Overstates Cystic Fibrosis Drug Benefit

fibrosis news — Tue, 29 May 2012 12:01:13 +0000

Originally posted in Fibrosis News

Fewer cystic fibrosis patients in the study saw their lung function improve by more than 5% following treatment with VX-809 and Kalydeco than was previously disclosed, Vertex said.

In need of Scandishakes

Terrie — Tue, 29 May 2012 05:18:42 +0000

Originally posted in Cystic Fibrosis - Adults

Does anyone have shakes and don't want them. Insurance will not cover them. Please let me know.

Cystic fibrosis related Narcolepsy????

Incomudrox — Tue, 29 May 2012 05:18:42 +0000

Originally posted in Cystic Fibrosis - Adults

Someone enterain me here…. this is my running theory.

Narcolepsy is believed to be caused by hypocretin cell death in the brain. It is also believed that this happens in some cases due to a autoimmune response.

Cystic Fibrosis can someone have autoimmune issues as we well know. A lot of us have issues sleeping or staying a sleep for one reason or another.

My theory is that CF's autoimmune "feature" is killing off hypocretin cell receptors in the brain, thus resulting in "Cystic Fibrosis related Narcolepsy"????

Anyone??? Bueller????

Does anyone need nutrition drinks?

krisgabes — Tue, 29 May 2012 03:38:36 +0000

Originally posted in Cystic Fibrosis - Adults

Hi all-

The nutritionist at my CF clinic ordered me cases of Nutren 1.5 High Calorie Liquid Nutrition. It's in cans and made by Nestle in vanilla. It's 375 calories per can.

Let me know how many cans you would like. I just have so many! I'd love to share!

Rallying the troops…. we need to get together on this

dramamama — Tue, 29 May 2012 03:38:36 +0000

Originally posted in Cystic Fibrosis - Adults

Hi everyone~

I have some crazy news that I think we all need to be aware of as we go forward in our agreement to take the vertex drugs. I had become increasingly concerned about CFers getting sick and experiencing more exacerbations as the vertex drugs were being discontinued after Phase II trials. While the vertex scientists are not all doctors, some of them are and I feel and felt like they were completely falling away from one of the principal precepts of medical ethics taught to doctors: First, Do no harm. Yes, the drugs are life-changing in a positive way (a cure even) and, for this reason, are harmful when discontinued.

Because of this I contacted a top 25 Lobbyist in Washington to just see if there was anything he could do to help us atleast get the patients who are volunteering a pass to continue the drugs when the phase II trials end (seeing as there is no glaring safety concern). While he had never heard of this issue with CF patients, he was very aware with all going on with Vertex and CF. He graciously contacted the Deputy FDA commisioner and addressed our concern….

According to the Deputy FDA commisoner: there is no FDA law keeping these patients from receiving these drugs following Phase II trials!!!! WHAT??? VERTEX has complete control and authority to allow these patients access to these drugs. Now, keep in mind, that is not all of us, but can we not agree that our community should stand behind these patients who are agreeing to take these drugs!?

According to the LOBBYIST, he said we must all rally together and agree to NOT SIGN up for trials, unless it is written in the contract that the trial patient is able to remain on the drugs after Phase II ends. We have the power. Vertex needs us just like we need them…. They can't get paid unless we agree to be a part of this… it is ok to stand up for ourselves in this way….sometimes the boat needs to be rocked.

Along those same lines, there is a bill going through Congress right now with approval (they think) by October that will allow drugs that are life changing to have a very different course of review and trial period. It is called the Advancing Breakthrough Therapies for Patients Act…. Basically, this allows companies to expidite clinical trials so that patients can get access to drugs possibly after Phase II trials. The company will have to conduct phase III trials even while patients have access to the drugs. GUYS, IF THERE WAS EVER A TIME TO CALL YOUR CONGRESSMAN IT IS NOW. The ExPert Act is also important, but the other will allow drugs to reach us much more quickly.

And, Finally…. Do you know how powerful our words are?? One of the reasons that Vertex released interim results from the 770/809 Phase II trials was due to the fact patienst were blogging and Vertex could no longer control what information was being released. From the CFO of Vertex at the Deutesche Bank Securities Annual Healthcare Conference last week:

"The safety finding was very strong and we want to accelerate the program into a Phase III setting. For us to do that we have to talk to regulators both in the US and Europe. We have to talk to trial investigators, patients are now blogging regarding the results and there was a corporate concern here about information getting out of the company and not being in a controlled environment. That is what drove us to the announcement"

It is time to make our voices heard… They need us as much as we need them.

read about the BILL:

http://articles.chicagotribune.com/2012-05-09/news/sns-rt-drugs-breakthroughl1e8g8a89-20120509_1_cancer-drug-drug-regulators-approval-of-breakthrough-drugs

suggestions for a good CF center and transplant center?

Swedishstar84 — Tue, 29 May 2012 01:59:21 +0000

Originally posted in Cystic Fibrosis - Adults

Hi, I've been thinking about writeing my final exam (university) in another country Usa, Canada. any suggestions for a good CF center and transplant center? What about the possible costs of hospital stays and check up, bloodtests etc? for one who is not from Usa or Canada.

thank you very much for your answers!

Hugs /Marie

CT scans and our little CFers

ponytails — Tue, 29 May 2012 01:59:20 +0000

Originally posted in Cystic Fibrosis - Adults

Hi everyone. My daughter just had a CT sacn which showed moderate to severe bronchiectasis in the right middle lobe and lingula. Just curious what other parents of young kids have found out from their own kids CT scans. Thanks!

acinetobacter baumanii

rvm1212 — Mon, 28 May 2012 19:36:28 +0000

Originally posted in Cystic Fibrosis - Adults

Hi,

My husband has acinetobacter baumanii in his last sputum culture. He used to only culture s. aureus that has been treated with oral augmentine and he has a pretty good fev (around 85-89%%). He is 40 diagnosed as an adult (33). He had some cough increase lately due to a virus we all had, and he was started on augmentine. He took a sputum sample to the lab before starting the treatment (white sputum). He has been on augmentine (oral) for five days and is doing very well. The cough has almost disapear, but his culture came back positive for s. aureus and acinetobacter baumanii. I am very worry about the acinetobacter. Any one has culture it before?. How has it affected your health?. Have you been able of erradicate it or it keeps coming back in your cultures?. The doctor says that since his is doing so good on augmentine, (which the acinetobacter is resistant to), he doesn´t think is playing a big roll in his exacerbation, and he said we will just take another sputum sample and if it still comes back positive will treat with oral ciprofloxacin for two weeks, if not he won´t treat it. But I´m worrying myself to death since it seems to be a very nasty bug.

Can you please give me some insight?. Thank you very much. !!!!

Everybody watch this video this kid is awesome.

Daverog75 — Mon, 28 May 2012 19:36:27 +0000

Originally posted in Cystic Fibrosis - Adults

http://www.youtube.com/watch?v=NSLx89Wx8MY

Dave 37 w/cf

new, pls help

cmiller — Mon, 28 May 2012 12:43:20 +0000

Originally posted in Cystic Fibrosis - Adults

Hello,

My brother is 46 and has been sick for years; diagnosed with CF via sweat test yesterday.

He has lost so much weight, has circulation problems, abdominal pain and just copious amounts of thick mucus. He has no insurance. He lost his job and also kicked out of National Guard 2 years ago bc he was too sick to work and has been looking for diagnosis since 2006. He is not on any medication and does not as of yet have a doctor to follow up on the CF. He has been to the emergency room multiple times over the last few years and they say they can't help him. He had CT scan that shows multiple cysts in his liver, blocking biliary ducts but rest of abdomen looked okay on CT scan.

My concern, he says he feels his body is shutting down. He can't think straight, has not been able to pass stool for over a week. He is too weak, tired to get out of bed. He is eating but not much and doesn't seem like he is able to get nutrients out of his food.

It is 3 months before CF specialist will see him. I am not sure he will make it that long.

If I take him to ER again, what do I ask for? Is one sweat test enough to determine you have CF and start some sort of treatment? I am not even sure if there would be any medication available to help him.

Thank you for any ideas/advice.

Best,

Cheri

picc line help

TonyaH — Mon, 28 May 2012 06:47:22 +0000

Originally posted in Cystic Fibrosis - Adults

Hi everyone

We are not new to picc lines…this is my son's 10th I think. But the past few years they have been falling in the summer, and because we treat m. abcessus, he's on ivs for 8 weeks…pretty much eating up the entire summer.

I've posted here before and read others' answers about skin irritation with picc dressing. Andrew is very sensitive and his skin 'weeps' under his dressings. We have finally found a good combo that gives him a little relief but it's still not great and he is preoccupied with that dressing the entire length of treatment. For this reason, he does not want to do anything that may cause him to sweat for fear the dressing will come loose or irritate the already irritated skin underneath. He does not want to run outside, go for walks, or even sit outside at restaurants.

Can anyone share any tips they may have found to help keep their arm cool while spending time outside when it's hot? Does anyone else even have this problem?…or is it uncommon to have much trouble with your picc site while sweating? I was even wondering if there were freezable arm bands or something he could wear over and under the site (as long as we was not currently infusing), that would help keep his arm cool and give him a little reassurance.

Looking for a CF Center in Northern NJ or NYC

momofmia — Sun, 27 May 2012 16:03:32 +0000

Originally posted in Cystic Fibrosis - Diagnosis

I am searching for a CF center for my 15 year old daughter who has just been diagnosed. She has M470v an 7T/7T. Her physicians said her variants an polymorphisms have nothing to do with her illness. They just Rx'd HyperSal and Pulmozyne due to her Bronchiectasis, and constant productive cough and fevers. She also has chronic sinus infections,ear infections and thank goodness no GI symptoms. I want to make an appointment ASAP. We are also going for her Nasal Potential test as soon as school gets out for the summer. Could someone please recommend a reliable center for that? Her 3 sweat tests were negative at 3, 4 and 32.

I appreciate any advice you can offer.

Lisa

mom of an amazing 15 year old daughter. w/ bronchiectasis, chronic sinus infections, ear infections. M470v and 7T/7T.

Can’t keep up- exhausted

mamerth — Sun, 27 May 2012 13:50:36 +0000

Originally posted in Cystic Fibrosis - Adults

I have been doing cardiac rehab. Tomorriw is my second exercise session at hospital. All if a sudden this week my hip has been bothering me… Old joint problem
The past two days my left knee is giving me fits. I officially tweaked it
tonight while cooling down from walking.

On top of the exercise 5 days a week, I am trying to keep up with house
work. So tired! My body is worn out. How do I keep up and finish with the rehab
and keep up with regular life. I am normally tired so this tired is at a new level.

I don't have family in the area to get me through the rehab schedule. I am on my own. Husband is working lots during air conditioning season. Do I push through or ask them to back off… My body is suffering.

Tonight I can barely walk. My knee is in an ace bandage to get the swelling down. I am dreaming that I am exhausted.

What would u do if u were me?

Anesthesia issues?

SIcklyhatED — Sun, 27 May 2012 13:50:36 +0000

Originally posted in Cystic Fibrosis - Adults

Something I've always wonderd, does CF have an affect on anasthesia? Do we metabolize it faster/different? The reason I ask is 3 times I've had anasthesia "issues" (well, I call them issues…). Time #1 and #2 I was getting a bronchoscopy and I bit down on the scope. The first time they had to give me a ton of extra anasthetic to get my jaw to relax and I was bed bound for 3 days with a massive headache and dizzyness. The 2nd time I dented the scope. Oops. The #3rd instance, I was getting my 1st PICC placed and it was one of the worst things I've ever experienced. They said they'd knock me out completely (crappy veins) and I felt everything and was kicking but couldn't speak, and woke up crying.

I'm not exactly a big person either. 5'1 120lbs so it's not like it should take a lot to knock me down…. but apparently it does.

Anyone else? Or am I just a weirdo?

Bloating

guitarboy — Sun, 27 May 2012 13:50:36 +0000

Originally posted in Cystic Fibrosis - Adults

I thought it was male-pattern middle age weight gain, but a gastroenterologist diagnosed it as gas induced bloating. My belly has become more and more distended over the last six months. There's no pain involved but it's embarrassing and shirts don't fit me as well.

Any tips on how to treat and beat this? I took a course of Xifaxan without much success.

Research shows how estrogen in women causes an increase in mucoid infections.

sdelorenzo — Sun, 27 May 2012 13:50:35 +0000

Originally posted in Cystic Fibrosis - Adults

ScienceDaily (May 24, 2012) – Researchers from the Respiratory Research Division of the Department of Medicine, Royal College of Surgeons in Ireland (RCSI) have published a study which represents a major breakthrough in understanding why females with cystic fibrosis do worse than males. The study is the first to show that the female hormone estrogen promotes the presence of a particular form of bacteria which results in more severe symptoms for female cystic fibrosis patients. In addition, females who were taking the oral contraceptive pill, which decreases the amount of naturally occurring estrogen in their bodies, were found to have lower levels of the problematic
The paper was published May 24 in the New England Journal of Medicine.
The research found that estrogen promoted the presence of a 'mucoid' form of the bacterium Pseudomonas aeruginosa in the lungs of women with cystic fibrosis. These mucoid type of Pseudomonas aeruginosa bacteria are coated in a slimy layer which makes them more difficult to treat with antibiotics and more difficult to clear with the body's own natural defenses which leads to significant lung inflammation, explaining, at least in part, why females with cystic fibrosis often have a worse outcome.
Professor Gerry McElvaney, Director of the Respiratory Research Laboratory RCSI/Beaumont Hospital and joint senior author on the paper commented: "This study opens the way to a new understanding and potentially new therapies in the treatment of cystic fibrosis, a condition in which Ireland has the highest incidence in the world. This research study is among the first examples which shows the effects of gender hormones on infections and therefore has major implications for conditions beyond cystic fibrosis including other respiratory diseases such as asthma."
Dr. Sanjay Chotirmall, a Molecular Medicine Ireland (MMI) Clinician-Scientist fellow is the first author on the paper and Dr. Catherine Greene is the joint senior author.
The clinical research was carried out in the Cystic Fibrosis Unit, Beaumont Hospital and also utilised data from the National Cystic Fibrosis Registry of Ireland.
Cystic fibrosis is a life threatening inherited disease which primarily affects the lungs and the digestive system. A build up of mucus can make it difficult to clear bacteria and leads to cycles of lung infections and inflammation, which can eventually lead to damage of the lungs.
Ireland has both the highest incidence of CF in the world at 2.98 per 10,000 and the highest carrier rate in the world with 1 in 19 individuals classed as carriers. The incidence of cystic fibrosis in this country is almost two and a half times the average rate in other EU countries and the USA (1). At present, there are approximately 1,200 people with cystic fibrosis living in Ireland (2).
The cystic fibrosis research in the Respiratory Research Division exemplified by this paper is funded by the Health Research Board, Medical Charities Research group, Science Foundation Ireland, Molecular Medicine Ireland (MMI), CF Hopesource, Irish CF research trust along with individual donors such as Fergal Somerville who recently swam the English Channel in support of CF research in Beaumont Hospital.
This paper is an excellent example of the translational research presently underway in RCSI and illustrates interdepartmental and inter-institutional links as co-authors on the paper include colleagues from the Departments of Medicine (Dr. Sonya Cosgrove), General Practice (Dr. Borislav Dimitrov) and Molecular Medicine (Professor Brian Harvey), RCSI; Beaumont Hospital/RCSI (Dr. Cedric Gunaratnam, Professor Shane O'Neill); and the School of Medicine (Dr. Stephen Smith), Trinity College, Dublin.
The study's results are being presented by Dr. Greene at the American Thoracic Society meeting in San Francisco this month and by Dr. Chotirmall at the European Respiratory Society meeting in Vienna later this year

weird symptoms near my port

MCGrad2006 — Sat, 26 May 2012 12:45:59 +0000

Originally posted in Cystic Fibrosis - Adults

Hello all,

So I don't know if I pulled a muscle or what (maybe I should just stop doing chores…) or if this is related to my port. My port is on the right upper chest…the pain is is behind my armpit (same side), at the crease where shoulder meets arm. It is only when I move or lift things. Which makes me think it is muscle. BUT I am also getting a pulsing in my left ear. Are these things related?

How would I know if I had a blood clot in my port. There is no swelling or pain at the port or in the area where the catheter leads to. The ear thing is wierd, the pain I can deal with…but I want to make sure this isn't serious. I am a little worried because I did have a clot in a PICC about a year ago, but that was on the opposite side (in my left arm). Please let me know what you think.

Anybody try a dairy-free, gluten-free, sugar free diet?

AmyMaz — Sat, 26 May 2012 04:43:10 +0000

Originally posted in Cystic Fibrosis - Adults

My wholistic doctor recently recommended a dairy-free, gluten-free, sugar free diet as a way of improving my overall health and reducing GI issues. Has anybody tried it? If so, what are your thoughts about it? It sounds good on paper, but looks like it maybe hard to stick with it.

Liver Issues

TonyaH — Sat, 26 May 2012 03:17:54 +0000

Originally posted in Cystic Fibrosis - Adults

Andrew was just discharged after a 5 day admit to get started on iv therapy. While there initial labs (before meds were started) showed increased liver function. This has happened before, but only after he has been on antibiotics, not before they even started. They ran a liver ultrasound while we were in the hospital and it did show an enlarged liver and spleen, but nothing the doctors felt needed treatment yet..

I was just curious as to others who have had frequent high liver function lab results and enlarged liver on ultrasound..how high were your numbers? Andrew started off like three times the normal limit for liver enzymes, GGT, alk phos, etc.,. Second lab results showed lower, but still elevated numbers. I'm just wondering if this is something other clinics would treat, or if these results are typical of a watch and wait plan.

We have a great team…just curious what others have done and what the outcome has been.

Thanks!

Appartments & smokers….

Hardak — Sat, 26 May 2012 01:34:42 +0000

Originally posted in Cystic Fibrosis - Adults

Has anybody else had issues with living in appartment buildings and nabors who smoke? If so did you have any luck with recorse or working with the rental office to decrease the problem..

Currently I live in an appartment building all extiror doors/walk ways. And I've got a nabor below me and beside me that while this tennent hasn't done it yet, the last guy mannaged to cause me to seaze so badly that I had an ambulence out to get me.

I know some states have laws on the books that it basicly falls under the nusence adendum. Sadly doesn't look like it for WA state, at least not that I've found.

I know I tend to react rather serverly to passing smoke inhelation. It doesn't take much and I'm on the ground for 10-20 min coughing my lungs out and then have increased flem production for the next hour or two.