• Cystic Fibrosis

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Welcome to The Patients Voice Blog

Welcome to the latest ResBlog (online research web log) for The Patients Voice on Cystic Fibrosis.

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Amy Finke | 15/07/2007 05:25:00

Hi,

I am the mother of a 6 yr old boy named Nathan with CF. He was dx at birth . at 11 hrs old he was airlifted to a larger hospital with a bowel obstruction and recieved a colostomy due to meconium ilius and spent the first 2 months of his life in nicu 130 miles from home. He is doing fairly well so far. He has had psuedomonas 2x and been on tobi. He does the vest 30 mins to a hr a day, pulmozyme 1x, abuteral 1x,hypertonic saline 1x. he takes ultrase enzymes 5 w/ meal 3 w/ snack, adek, urso for (cf related liver disease) prevacid, this is all when he is healthy. as far as how it effects us and him. we have choose to have only 1 child due to cf. my husband works nights, i work days with opposite days off in order to have him cared for any overlapping time is with grandparents or aunt. he has NEVER been in daycare

main challange would be all the treatments and fitting them around scheadules of school etc. and 6 yr olds like to play not be strapped down to a machine for 3 hrs a day! he is awesome at al the pills and has been swallowing them since he was 3.

through the local pharmacy as far as how we get all his meds

no complaints the are awesome!!!

selami | 16/07/2007 13:34:00

merhaba ingilizce bilmiyorum fakat yazdıklarınızdan tahmin ettiğim kadarı ile sizde kis.fibroz yabi CF hastasısınız.ben turkiyede yasıyorum bana attmış olduğunuz e-mailinizi aldım fakat ingilizce bilmediğim için bişey anlayamadım ama yine de yazmış olduğunuz adrese giridm tabii siteyide okuyamadım.sonuçta bu mesajı yazmak geldi içimden size DUNYADAKI TUM KİS.FİBROZLU hasatalar tanrıdan sağlık ve mutluluk dolu gunler diliyorum kendinize iyi bakınız

Jan | 16/07/2007 15:43:00

My son was adopted and it was a surprise when he was diagnosed with CF at the age of 7. His main issue which was not covered by the survey and many web sites, is sinus infections. He has had 4 surgeries for sinus polyps. He has cultured PA twice is crurrently in a CFF study to see what regime works best for first aquisition of PA. He does not require enzymes nor does he need CPT.

My main concern is the cost of medical care with private insurance. He is too well to qualify for SSI. We "make" too much money to qualify for any assistance and my entire paycheck plus some goes to pay for meds and copays. The scary thing is that he is well and has not been hospitalized for CF problems. We are near retirement so I am constantly worried where we will come up with the money for copay, test and medications -forget funds for college. One round of Tobi will cost $900 when he get off the study. The short of it is we have to live long lives so he can live a long live.

jan

turnthetables from http://medinthemist.blogspot.com | 19/07/2007 23:51:00

How does Cystic Fibrosis affect your daily life/ the daily life of your child? What is the impact on other family members? To put it simply. In one way or another, it affects every single thing you do. From how easy it is to get out of bed in the morning, the mood you wake up in, your morning schedule, your alertness at school when you get there, how tired you may or may not get during the day, how you look at life depending on how you react to what you hear at pediatrics, what food you eat. Everything. What are the main challenges in living with Cystic Fibrosis and your treatment regime? A few. In terms of treatment regime it is mental and motivational. I didnt really realise in the past, but very regular talk between doctors, nurses and my parents about life spans and such often left you thinking, what really is the point in doing all this crap when its going to end soon anyway? Its a very complicated issue, because many factors, including and excluding CF will affect your mental state, i suppose including your genes. If you have a negative outlook on life, your less likely to do your treatment. I think overall, the main challenge is to not to live your life as someone with cystic fibrosis, but to try and just get on like everyone else. Everyone has problems, some people will have ones insignificant to you, others will have larger ones. Fight. Never give up. Tell us about you/your child’s medication and treatment for Cystic Fibrosis? I take drugs when I eat (creon), a number of vitamins in the mornings, iron tablets, permantent oral anti-biotics, and hayfever tablets. I also have nebulised dnaze (once a day) and colistin (twice a day) I also use a self physiotherapy device called an Acapella twice a day. Thinking about tablet form drugs, I hardly notice I take them anymore. I get up in the morning and take 12+ tablets with a glass of orange. It takes less than a minute. I take tablets when I eat instinctually, its not something I ever consider a chore. Physiotherapy and nebulised drugs used to be a huge chore. At one point I was getting up at 5:30am to make it to 9:00am lectures in time and do my treatment. 2 things changed as I grew up. Always, strictly doing treatments every single day, no matter what the circumstance is not good for your mental health, both treatment and life in general have to, unless its totally critical that you take something, live side by side, which means sometimes missing a treatment. The second change was technology. The worse nebuliser I had used to take 40 minutes per treatment, that is now between 2 and 4 minutes! Physiotherapy used to mean lying on a drainage bed being hit by my parents, I now do this myself with a device called an acapella. Do you receive and collect prescriptions for nebulised antibiotics for yourself/your child? If so how? Yes. Originally we collected it once a month from our local hospital without prescription. Then the hospital turned into a foundation hospital and money had to be moved around, so they refused to give it. After some negotiations my GP agreed to provide it. It was added to my automatic monthly prescription, which I just picked up from my GP surgery once a month and took to the pharmacy. Again, for so called money saving reasons, my GP surgery stopped automated monthly prescription services and 'preferred' that we let the pharmacist deal with it completely. In this case, Lloyds Pharmacy. Well, this was absolutely pathetic and meant it took over a week from me telling the pharmacist I needed drugs for them to actually turn up, with many other problems in between. A 10x increase in time and effort from the previous method. The second option was that you could still use the GP survery, but you cant just phone them to tell them you need a prescirption, they cancelled the number. You have to go to the GP surgery, drop a list of required drugs into a box, then return 2 days later to collect it. So, 3x as long as previously, and I pollute in my car twice as much. Not really happy with the current service. What would you like to see improved in the support provided by healthcare professionals and their teams? Healthcare providers and there teams, as in doctors and nurses do a fine job, inside the restricted confines of the current NHS. The way the NHS is run is where the majority of my problems stem from. What used to be simple...such as obtaining a sharps box, or obtaining equipment and medication for a course of IV anti biotics is now getting more and more stupidly complex. Different trusts, such as the one which runs Sunderland General, need to remove expenses from there budget to pass government tests on being a good hospital. So now I attempt to get the same services from elsewhere, such as my GP. In the end, the money is coming from exactly the same place, just via a different route. It just makes life that much harder and frustrating for the patient, when you end up fighting for everything you need.

Brydgett | 23/07/2007 20:33:00

My son Beau is 1 1/2 and was diagnosed in may 2007. He is on Creon 5, 3 with every meal and snack, albuterol inahler two puffs twice daily, prevacid, he also usues a percussor, and adek multi-vitamins. CF has changed our lives. We tend to take one day at a time. Our insurance covers very little of Beau's treatments. I am applying for SSI even though it is a long shot. But we need the help paying for his treatments. We have cut all the extras out of our lifes to help money wise. There are so many ways I think our government could help all of use out in making our lives and our kids lifes so much better.


Alexis McBrayer | 25/07/2007 22:32:00

I am the wife of a man with CF. My husband, Dave, will be 33 in October. The impact this has on our marriage is both financial and emotional. Dave's illness has progressed to the point where he can't work, which can be a bit stressful for me. Our insurance doesn't cover all of his medications, although he will be covered by Medicare in January, so at least we won't have to worry about that any more. We also want to have children very much, but the only way for us to do that is through IVF. Again, this is not covered by insurance.Challenges regarding the treatment regimen are that there are just so many things he has to take. I think patient compliance is a major issue. He is on Creon, antibiotics, bronchodilators, antidepressants (I know I would be depressed if I had to deal with all of that), etc... We get the majority of his medication from CVS, although some things are mailed to us, such as the materials for accessing his port.As far as improvements go, I would like for insurance to cover more of the medications he needs and for IVF to be covered as well. I really like all of Dave's doctors, so that's not an issue. On the research front, we really need better anti-inflammatory drugs. I think a major problem is the inflammatory response to the infections, and this doesn't seem to be addressed by any of the drugs he's taking.

Rebecca | 03/08/2007 17:37:00

I'm 19 years old with CF. I was diagnosed at 3 weeks old. I also have 2 younger sisters with CF.

For the first 14 years of my life my main challenge was my digestive system... and then when I was 14 my lungs started giving me problems as well.

Thankfully a few months before I turned 15 someone came and told my parents about a non-profit organization that helps medically fragile children recieve super nutritional products. Since then I've improved a lot. no more digestive pain (as long as I stick to my protocal) and no lung problems. I'm on NO doctor perscribed enzymes, drugs or anything which is totally awesome and I feel normal.

my website is www.rebeccaelias.org

Rebecca

Rose | 26/09/2007 08:03:00

I am a 20 year old with CF. I was diagnosed the day I was born as was my twin sister who past away this past May due to CF.

CF has always had a big part in my daily life. I was born with mostly the digestive problem, and my sister with mostly the lung problem. It wasnt up until a few years ago I really started having breathing problems. When we were younger we werent hospitalized much, for being sick, they were mostly tune-ups, that way they can clean our system in hopes to stop anything from even occuring. As we got older, it got harder. We got prescribed more and more meds to help with different things that had come up which was hard to remember what and when to take at what time. My sister and I always tried to help each other out, or encourage each other if either one of us didnt feel up to doing something. For instance, ive always had a hard time remembering to take my oral medicines, and she always had a hard time wanting to do her treatments. So she'd tell me to take my meds, or sometimes she'd lay them out for me while i got her nebs ready. It was great, it helped a lot. I still have a hard time remembering but I think im getting better. As for my Treatment Regimene goes:

Every morning I wake up, and take my Albuterol neb treatment with my vest for 30 min. After I finish my albuterol I take my Hypertonic Saline neb, then my Pulmozym, and lastly if its an ON month, my Tobi neb. I do about the same routine again in the afternoon as well as at night. My treatment regimen isnt that big of a deal, as long as im not in school, though when I am in school, I tend to have to skip my afternoon session.

I take about 8-10 meds a day, a few of which i take 2-3 times a day. To name a few: Prilosec, Pancreacarb MS-8, Azithromiyzn, Vitamin A,E,D, ADEK etc. It can be pretty tiering and annoying to have to remember to take them each and everyday, I mean you just wish that you could be like every other 20yr old out there who goes out with friends and plays sports with no problem. But I get through it. Oh and as of 7 months ago, I now take Lantus for my blood sugar and check my blood daily to make sure it isnt to low or to high, as it does after my milk feedings.

I take my milk feedings during the day in order to help me gain weight.

Most of my pescriptions are paid for by my Insurance company, Thank God, because there is no way I or my family would be able to in no way afford most of my meds.

Its pretty rough, but I mind it. I just go day by day. And as of now, I am actually pretty happy with the healthcare professionals today.

Rebecca B | 28/09/2007 14:22:00

I have a 6 year old daughter that has cf. We have struggled but she has been strong enough to pull through. We have been through so much. She wasnt diagnosed til she was 11 months old. She stayed sick all the time. We live in arkansas and i had never even heard of cf. She is in the 1st grade this year. She often gets down that she has to do her treatments while the other kids play. She has ben able to swallow her enzymes for about 3 years now. They just bumbed her up to ms-8. Which are huge to swallow for such a little girl. She only gained 8 ounces this year. She eats all the time. I cherish everyday with her. She goes to public school. People may ask why but i want her to have as much of a normal life as possible. She only gets one so i want to make it as good and fun as possible.

Cari | 04/10/2007 00:05:00

My 3 month old daughter, Lily was diagnosed with CF when she was a week old. Through the last 6 months of my pregnancy we knew of the 25% chance she would have it because we were carriers, I just hoped & prayed she would be okay. It was the hardest thing finding out she had it. I took it really hard. So far there hasn't been any problems. She is on Creon 5. We break open the pill and give her the enzymes inside mixed with baby food everytime she eats. I just really hope and pray there is a cure found soon. Lily's life is so important to me. I want her to be a happy & healthy little girl.

American | 03/06/2008 06:07:00

A cure would be nice. One not motivated by greed and shareholders from the drug companies. Not supplied by a system of doctors or hospitals that feed off our suffering like parasites.Money is the vail that covers our pain.

Below are a list of other conditions covered within The Patient Experience Knowledgeboards

Addisons Disease
Asthma
Arthritis
Back Pain
Breast Cancer
Carpal_Tunnel_Syndrome
Cystic Fibrosis
Cardiovascular Disease
Crohn's Disease
Endometriosis
Epilepsy
Fibromyalgia
haemophilia
Hay Fever
Hypercholesterolemia
Hypertension
Lung Cancer
Meralgia_Paresthetica
Motor_Neurone_disease
Multiple Sclerosis (MS)
Obesity
Overactive_Bladder
Schizophrenia
Thyroid Problems
Transplants (Kidney)
Transplants (Liver)
Tuberculosis
Ulcerative Colitis
Ulcers
Urinary Incontinence
COPD
Haemophilia
Lupus

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