Cystic Fibrosis (CF) is an inherited genetic condition, which mainly affects the lungs, digestive system and the sweat glands. It is the most common life threatening condition affecting Australian children. CF affects the exocrine glands, which secrete body fluids such as sweat, mucus and enzymes.
Lungs: people with CF produce abnormally thick, sticky mucus which blocks small air passages in the lungs, causing difficulty in clearing infections and can result in lung damage over a period of time.
Sypmtoms
My story
In 1999, after the birth of my 2nd premature baby a girl,Jasmine, born at 27.4 weeks, I developed a very bad cough, and everytime I coughed my ribs would hurt. After sleepless nights of coughing and crying, because of the pain, I went to my local GP who sent me for X-rays and a few blood tests. Week later, I was diagnosed with Osteopenia – with 85% density in my bones – which is causing me to break or fracture my ribs when I cough really bad.
This happens all year around. The local GP said I was too young to develop this, as only the elderly get it after menopause. So I was sent off my merry way to a specialist at the Mercy Hospital in Melbourne, who took one look at me a said it was Marfan’s Syndrome. After completing all the relevant tests such as an echocardiogram – eye tests, X-rays of the hands, figure measurement, and a CT scan of the ribs and chest. His diagnostic was confirmed. I had Marfan's Syndrome.
When the first specialist told me that I had CF, which is extremely rare in adults, the first thing I thought of is “I am going to die” I'll never see my children grow up and turn into fine adults. Children with CF barely reach the age of 30 years old…Adults are 40 years old…I am 32 now…so I have 9 years to do things. My goals and dreams. Some adults are diagnosed with it later, but they are the rare ones.
Tuesday 28th 2001 :
I have an appointment with the Psychologist on the 6th September, Dr. R suggested it when I went it there last, but I was mulling it over. After high stress lately, I decided to go and get things of my chest so to speak, and hopefully it will also cure my ulcer.
UPDATES
Having the run around regarding Tristan, I have been trying to organise him to be tested for Cystic Fibrosis (CF). The paediatric, who looked at Tristan regarding Marfan’s Syndrome, doesn’t want to see him again. My local Dr. wont give me a referral as she said she is not allowed as it has to be done by a specialist or paediatric. Dr R. at the Alfred, stated that he wanted both kids tested for CF. I called the Alfred Hospital, and spoke to the Secretary there, F, CF section. I told her all the bullshit, and she told me that Dr R. can not refer Tristan as its only for adults with CF, not kids. F, gave me a number for a lady who will “talk” to me about a referral and the genes and stuff. She works with Genetics. It’s NO WONDER why I have this ulcer! - Not from the F, but from all the bullshit, trying to get tristan tested for CF.
Saturday 2nd Febuary 2002:
Wednesday May 17th 2002:
I still see the Doctor at the Alfred Hospital about once every 2/3 months. My weight has stayed the same, between 49 – 52 kilos. No matter what I eat or how much I eat, I gain then lose it. What I mean by losing it, its some nights I wake up in a coughing frenzy, and it makes me vomit. My back is sore from coughing, and puts my back out every time. But its something you just learn to live with. I use the neubliser about 4 times a day, and that’s to help my breathing better, and also loosen up the phlegm so I can spit it out, before dry reaching it out.
Monday 3rd June 2002:
Tuesday 4th June :
Dear Kathryn
Tuesday 9th July 2002:
Sunday 14th July 2002:
Tuesday 2oth August 2002:
DEFINITION:
Wednesday 25th September 2002:
Tuesday 8th October 2002:
Thursday 16th january 2003:
Friday 17th January 2003:
20th -24th January 2003:
Bottle filled with 3 quarters water, empty tube.
Take deep breath and blow into tube to make bubbles in bottle. This is done 10 times and I have to heave to cough up phlegm. This technique helps to expand the lungs to the fullest to upon them up more for more air.
The put my operation down for 3rd Feb.
Monday 3rd February 2003:
Friday 4th April 2003:
At the moment, i am getting rid of a small chest infections, only to get the beginning of a cold. I am worried about this SARS flu, as a 3 year old girl has already been admitted to a hospital in Vic, near shepparton. Some have died from this deadly flu, that has hit Europe/Asia and now Australia.
It is recommended that certain people be immunised, including:
4th June 2003:
9 November 2003:
16th December 2003:
5th January 2004:
6th January 2004:
10th Novemeber 2004:
Went to the Alfred for my appointment, and received some disturbing news. The 2 most scary words popped up in conversation with Dr RS. "LUNG TRANSPLANT". Sorry, i am still picking up my bottom lip. He said if i dont look after myself, i wont be entitled for a lung transplant. My lungs are on 53% (26% each), everytime i go in for my 3 monthly appointments, my lungs drop about 6% each time. And if i dont look after myself i will be dead in about 2 years. Not only , also undergo an operation to fix my "flappers" at the beginning of the stomach, and put a elastic band around the stomach to stop reflux. Which also requires the thing up my nose for 24 hrs prior to being cut open. I havent made that decision yet. So typically me, sitting in Dr RS room, he is being seriouos and i am making jokes, as i normally do when i am nervy. Never seen him so serious like that before.
I still have this chest infection, and i cant use the medication they have been giving me for years, as its gives my a yeast infection, so the Dr. told me not to have anything for my chest infection. So now i am wheezing, really tired, headachy, and no energy, which i am pushing myself to do things for exercise.
In Memory Of :(Marfans)
Digestion: The pancreas is a gland just below the stomach and one of its functions is to produce enzymes which break down food so that it can be absorbed by the desgestive system. In CF the sticky mucus can make it difficult for the enzymes to reach the digestive system and as a result the food eaten cannot be fully digested. Children with CF may therefore have difficulty in gaining weight and have large bulky stool actions.
Sweat: People with CF do not sweat more than other people but they do lose more salt and potassium in their sweat. The main diagnostic test for CF is the sweat test, which measures the level of salt in the sweat, however it cannot predict mild or severe cases.
People with CF may have the following symptoms:
Persistent cough, particularly with physical effort
Some difficulty in breathing or wheezing with effort
Tiredness, lethargy or an impaired exercise ability
Frequent visits to the toilet
Salt loss in hot weather, which may produce muscle cramps or weakness
Poor appetite
I am 32 years old, and 6 foot 1.5 tall. He told me that my Oestopenia was related to Marfan’s but he still had deep concerns about my cough though.
This specialist sent me to DR H, who specializes in respiratory problems. He made me go for another blood test, 2 CT scans, one of the lung and the chest. Few weeks later he told me I have Bronchiectasis, and was going to test me for CF, as it was related to Bronchiectasis. I went for the blood test, CT scan, a phlegm test and a sweat test. It came back positive. DR H, then called DR R who specializes in CF. I saw him and I was expecting to get the results on the 6th March, to see when my expiry date is up and instead all I got was the run around. I had to tell him all my childhood medical history again, and now I have just completed the final lot of blood tests, CT scans and a “Fat” test. (Where you have to poo in a jar and hand it into pathology so they can dig for gold. LoL) It’s a test to test the fats in your body. It’s a rare test. Now I have to wait another 5 weeks to find out the results.....which is mainly the blood test which takes 5 weeks. They took out 3 tubes of blood and they do 15 separate tests on it.
My Reaction
My parents are pretty freaked out about the whole thing. But also been very supportive throughout the whole ordeal. Looking after my lovely children while I have my medical appoinments. I am just so pee'd off, that I have to wait another 5 weeks to find out the results, which confirms CF. Meanwhile, the doctor can't do anything about my weight loss, until the results come in. I weigh 48.4 kilos. In pounds it's roughly 80-90 pounds. But I am not sure.
I have an appointment with Dr R. at the Alfred on the 2nd October, to get the test results, from when I took Tristan for Marfan’s Syndrome. I never fully understand the genetics side of things regarding CF, as I am also learning about Marfan’s Genetics as well. I have learnt that I have an unknown CF gene. Melbourne deals with a few genes in the basic – 6 weeks DNA testing, they try and locate the common genes, which is inexpensive to have done. The other test for the other DNA test for CF takes longer for the results to comes through and costs heaps of money. Something, which probably millionaires can afford, I cant. It me wonder which millionaires give to charities and which ones are scabby and spend it on the family and friends.
Well I finally accepted that I am going to parish around the 40 marks. I am seeing a shrink, social worker, physio, dietian and the Doctor. I make this an all day thing, arrive in the morning and leave late afternoon. I feel better seeing a shrink, which she’s, has helped me to discuss things, which I bottle up. For the first time I am slowing starting to feel good about myself. I don’t hate myself anymore. I don’t care what others think about me. I wont lose any sleep over it.
I am also taking the lung function test every time I attend the hospital, my lungs are currently on 67%, and I now weight 52 kilos. I have actually started to put on.
After seeing Shallow Hal, at the cinemas, beauty is skin deep; don’t judge others on what they look like. That movie really moved me.
I took the flu shot about 4 weeks about, and now I have a recurring cough, headaches and my bones are achy and my eyeballs are hanging out of my head, due to midnight and early AM coughing attacks. I can’t even complete a full sentence these days without coughing. My niece thinks is funny, but unfortunately I see no humor in it.
My treatment at the Alfred is going well. I constantly make it a field trip when I go in all day. I usually go in every 3 months, to see the senior Clinical Psychologist, which is part of CF., I chat to her about everything and anything, that are constantly causing stress and making me sad at times.
After her, I go for my Dr’s appointment, during the time, which I wait, I am rushed first to see the Dietician. We chat about the food and the drinks that I eat, and weigh myself to see if I have gained any weight. That normally lasts for 15 mins. I go and get my lung function test, which is just like taking a breath analyzer. A quick inhale, then a fast, quick exhale. Which is recorded on their computer. And then it’s worked out, and you’re given a rough percentage. After I get my lung percentage, I sit out in the TV room and wait to be called out. I see the Dr after another wait, and he tells me the results. I am normally in there for 4-5 hrs. And it takes me about a 1-½ hours to get home, depending on the traffic, as its rush and road rage hour.
At the moment, I have a pain in my chest and my right upper side, which I have no idea whether a rib has gone, or I am getting pleurisy again. I actually got HIVES a week and a half away, and broke out into a rash. Something I ate. I hope that isn’t connected with the pain I have right now.
I am going to the Alfred Hospital tomorrow, so I’ll get it all checked out.
Another field trip. Will let you all know what happens.
I went to the Alfred today, my pain is still there. I had the required tests done at 4.30pm. It didnt take that long at all. My lungs are currently on 57%.
Friday 21st June 2002:
I got a letter today in the mail regarding the results, from the Endowine on the 4th June:
The tests you had recently confirmed you have rib fractures. You also have a very low Vitamin D level and it will be important to improve this to strengthen your bones. The oestrogen level was reasonable.
I recommended taking a daily vitamin D supplement, the best of which Ostelin 1000 which can be obtained over the counter from the chemist at one capsule daily. I can give you a prescription from the hospital pharmacy at your next visit if you prefer this.
With kind regards
Your Sincerely
D.J.T
Happy Birthday to me! Nothing like spending the afternoon at the Alfred.
My lungs are on 63%; I weigh 52.9 (I have put on the .9 which I am happy about in the last 3 weeks).
My appointment was at 2pm. I got there at 1.50pm. I saw the Physio, who showed me new techniques on how to cough up phlegm. I told her I’d stick to my way of doing it. After her, I saw the dietician and she gave me another tin of Nutridrink to gulp down twice a day. After her I then went to do the lung function test, then at 4pm I saw the Dr. How’s that for an exact appointment time?
Dr. RS wants me to do another fat test. I have to squat and shit in a tin for 3 days.
Happy Birthday to me!
I started my very important task for the next 3 days. I got my Big Milo can and off we go.
Tuesday 17th July 2002:
I got all my paperwork, and my Milo can. One of my friends dropped me off and waited with me. I carried my POO proudly into the Alfred Hospital. I dropped it off at pathology, without the Medicare slip, so I had to race upstairs find F and get her to write me up another one. Then I raced downstairs and dropped it off. I get the results on the 20th august.
I got the results of my Endowine, my bones are really low, and he has put me on other medication, which has to be taken once a week as well as the Osteolin daily. Hopefully my bones will be strong again.I have to see him again in 12 months.
My father was kind enough to take the afternoon off and drive me into the Alfred Hospital.
My appointment was at 1.30 I was seen to 2pm. I knocked back my lung function test because I was there for the results from my Fat test and also I didn’t want to stay long as it was my sons 12th birthday.
The Fat level was 5.4 –5.7 and Dr. RS has put me on enzymes. For my digestive system. The Dr and the dietician both explained to me when and how many to take.
1 full glass milk – 1 tablet.
Snacks between full meals – I tablet.
Breakfast, lunch and dinner – 2 tablets.
I am a bit shocked by all this and I must remember to take them, as I am hopeless in remembering to take them. I was hoping with my CF and all, that I didn’t ever have to take these tablets, and now I do maybe for the rest of my living life. What a bummer!
Digestive Enzymes assist the body in the breakdown of food. Different enzymes with different functions are produced in particular areas of the digestive tract.
DESCRIPTION:
Incomplete digestion may be a conbruting factor in the development of many ailments including flatulence, bloating, belching, food alergies, nausea, bowel problems and stomach disorders. Digestive enzymes are primarily responsible for the chemical breakdown of food and constitute a large portion of digestive secretions. The human body makes approximately 22 different enzymes that are involved in digestion.
I took the enzymes virtually the next day; I was on about 9 enzymes a day, not including the other tablets that I am currently on. The enzymes worked fine for 2 weeks, it stopped me from having loose stools each morning, it wasn’t causing me to get stomach cramps after every full meal it was great.
The only side effects that it caused me was all day/night headaches and I was constantly tired. I had no energy to do the things I wanted to do. I couldn’t even sit down for 10 mins and use the Internet. I normally get 10 hrs per night sleep, so I do get sleep. My stools lasted all morning as well; it was beginning to piss me off so I stopped taking them. I feel heaps better than what I did.
What I think might’ve happened was when the specialist prescribed these enzymes he forgot to put down how many mg in the tablet. When I went to the chemist, he asked me what mg the Dr wanted, I said I didn’t know, so the chemist’s gave me the highest dosage, which is 10,000mg in an enzymes. So for one day I was on 90,000 mg. It seems a hell of a lot. I am going back to the Dr’s on the 8th October, so I will be discussing it with him.
My appointment went well with my specialist. He has a great sense of humour. He cracks me up every time. I took my lung function test like I normally do before my appointment, and went back into the waiting room to wait. My Dr walk in calls me out, and puts his arms around me, I look up into his face, and his into mine and I say “Don’t worry your still taller”. And we laugh. He is about 2 inches taller. Whereas my previous DR, was 5 inches shorter. My current Dr, also talks to me like it is. He doesn’t use all these medical words, which has 28 letters in it.
He tells me that my lungs are on 60%, and if I cough up blood with my phlegm, I need to go to the Alfred Hospital ASAP. I also asked about my Creon (digestive tablets) as I explained to him the off side of things, and he still wants me to take them, but few. He wanted me to see the dietician, about it, but she didn’t wanna see me. Oh well. So I am not taking them at all. Some days I think it’s a waste of time going. Personally I do not need to know how much my lungs drop every 3 months, especially if I have broken a rib or is fluey, as that’s a BIG drop.
I had X-rays taken of my right side and chest. I was seen straight away instead of waiting. As there were people ahead of me with appointments.
I picked up my X-rays, and then headed down to Sunshine clinic to see Dr. H. As Dr T was only working nights. Dr H. Said I hadn’t fractured any bones, but there is something on my right lung. Could be fluid on my lungs. I hope this hasn’t affected it, as my right lung is my GOOD lung.
I am unable to sleep at night, unless I am propped up with 4 pillows, which I am sitting up to sleep. I have a very sharp pain in my right lung every time I breathe, sneeze or cough. It’s like a stabbing sensation. Coughing also causes me to get a massive backache. I can’t sit down for a long time as it wrecks my back. I have also gone off my food. My sister (Who is a nurse) told me, that for my tiredness, the oxygen isn’t getting into my lungs, and it’s causing me to be tired most of the time.
I am also waiting for the sputum results.
My Dr also told me that the X-ray place requires all my other X-rays so he can examine them.
Another Show and Tell, he must be fascinated. As I had over 50 X-rays with me . Happy viewing I say. So I have to wait for their report before I see the dr again on Tuesday.
I was admitted to the Alfred Hospital because I was having trouble breathing and I was having a sharp pain in my right lung.
In the emergency department I was virtually seen straightaway event though there were about 10 people waiting.
The doctors in emergency took some xrays and blood tests. I was told I was going to stay in hospital for awhile for a lung “tune up”.
During my 4 day stay I was on a drip, had over 5 blood tests and a CT scan for my Oestopenia and my lungs.
I had to cough up sputum in a cup daily.
The CF staff that was looking after me told me I have to get myself in a routine. They showed me everything.
Here are a few examples of what I have done.
Before I use the treadmill and bicycle I have to wait until the mini gym wasn’t in use and also wipe down the equipment with disinfectant before I used it so there won’t be any cross-infections and also not to pick up germs from others.
Those are the main exercise that a CF person has to do.
The results of my check were that I had a bacteria bug in my lung and a blood infection. I also spoke to the dietician where she told me the right foods to put on weight. For example, mix butter with mashed potato, gravy with everything, full cream milk and lay off the low-fat and dietary stuff. East heaps of McDonalds or KFC. I try and have McDonalds 4 days per week. Medium fillet of fish, chips and coke followed by a sundae with extra chocolate.
The social worker came in and we chatted about my fears and CF. Mostly personal stuff.
The Chaplain freaked me out a tad. He stood at the doorway and introduced himself. I asked him in horror if he was there to read me my last rites. He smiled and said no, he was just here for a chat and he goes around to everyone. I spoke to him about death and dying, and my feeling in general.
I find it hard to chat to anyone about dying/death.
After 4 days of getting my routine in order I was allowed to go home. Four hours of being home I broke my hand.
31 Jan: Went to the Alfred Hospital so they could check out my hand. They put me in the waiting room. After 10 minutes I was called to se the doctor. He told me that my hand needed a plate and I must choose what anaesthetic I wanted. General, with my current lung infection with CF I might get another infection. Local anaesthetic will be an “arm block”, when they block off the arm only. One needle in the arm when conscious. I thought about it and the arm block seemed OK, but I wanted general, even though the risks are there. It’s my first operation and I was scared shitless.
I was to be at he Alfred Hospital no earlier than 6:45am. I arrived on time. After I was seen by admissions with the paperwork I fell asleep in my room for two hours. I had to change into a hospital gown, all my jewellery off and a head cap on. My blood pressure was low, as always, and I was prepped.
The nurses also placed heart monitors on me for Marfans and an oxygen mask for my lungs (CF).
They gave me a general and I was out like a light. When I woke up my arm was sore, tightly wrapped up and it felt like my hand couldn't breath.
The doctor said he has never seen anything like it. I got three pins and a plate in my right hand, which are in permanently and a scar on my hand.
I threw up enough to fill three kidney dishes. Later that night I threw up again but I slept like a baby crashing it at 9pm.
I have been going to the Alfred Hospital once a week, for therapy/Physio for my hand. It was hard to move it at first, but week by week, the split became smaller, and i had more usage out of my hand. I wasnt surposed to drive for 2 weeks, but unfortualey when you have kids, you have no choice but to drive. E whom I saw weekly, was such a nice person, and she was very pleased with the outcome of my hand. It healed up pretty quick, and now i have no bandage/split on my hand. Except for a scar which is about 10 cms long, with has to be massaged more, to flattened it out, as my skin is still tender around the plate.
7th April 2003:
I thought I'd put up what PNEUMONIA is as it is normally accompied with a CF person.
Pneumonia is a type of lung infection, caused by a virus or bacteria. The lungs are filled with thousands of tubes, called bronchi, which end in smaller sacs called alveoli. Each one has a fine mesh of capillaries. This is where oxygen is added to the blood and carbon dioxide removed. If a person has pneumonia, the alveoli in one or both lungs fill with pus and fluids (exudate), which hinders the gas exchange. This is sometimes known as 'consolidation and collapse of the lung'.
Anyone of any age can contract pneumonia, but it tends to be common in children aged four years and under. Pneumonia can strike suddenly or gradually. With appropriate treatment, one can expect to get better in around one week to 10 days.
Symptoms : The symptoms of pneumonia depend on the age of the person, the cause and severity of the infection, and any existing problems with immunity. Some of the symptoms may include:
· Rapid breathing ·
Breathing difficulties ·
Fever ·
General malaise ·
Loss of appetite ·
Cough ·
Abdominal pain ·
Headache ·
Chest pain ·
Blue colouration of the skin around the mouth (cyanosis), caused by lack of oxygen. A range of causes Pneumonia can be triggered by a cold or bout of flu, which allows the germs to gain access to the alveoli.
In approximately half of all cases, no cause is ever found. Some of the micro-organisms that can cause pneumonia include: · Bacteria - symptoms include rust or green coloured phlegm. Anyone of any age can be affected, but susceptible groups include babies, the elderly, alcoholics and people recovering from surgery or coping with other illnesses (such as lung disease).
Viruses - symptoms are similar to a severe bout of flu. It is thought that around 50 per cent of pneumonia cases are caused by viral infections.
Mycoplasma (a special kind of bacteria) - symptoms can include white phlegm, nausea and vomiting. Pneumonia caused by mycoplasma organisms is generally mild, but recovery takes longer.Diagnosis methods. If your child seems to be recovering well from a cold or flu, but then relapses, they may have a chest infection. See your doctor immediately, since pneumonia can be life threatening to babies and young children. Pneumonia is diagnosed using a variety of tests, including:
General examination :Chest x-rays.
Treatment optionsIn many cases, the person's own immune system can deal with the infection, but antibiotics may sometimes assist recovery. Treatment depends on the age of the individual and the type of infection, but can include: · Hospitalisation - for babies, young children and the elderly ·
Plenty of fluids - taken orally or intravenously ·
Antibiotics - to kill the infection, if bacteria are the cause ·
Medications - to relieve pain and reduce fever ·
Rest - sitting up is better than lying down.Immunisation against pneumoniaOne of the most common types of bacterial pneumonia is pneumococcal pneumonia, caused by infection with Streptococcus pneumoniae. There is a vaccine against this strain, which reduces the risk of infection.
Elderly people ·
People with chronic illnesses, such as diabetes ·
People with reduced immunity ·
People who have had their spleens surgically removed ·
Aboriginal and Torres Strait Islander people over the age of 50 years ·
Aboriginal and Torres Strait Islander people at two years of age and older who live in remote communities.Where to get help ·
Your doctor, The Australian Lung Foundation Tel. (03) 9570 3893 or 1800 654 301
Things to remember :Pneumonia is an infection of the lungs, caused by bacteria or viruses.
Anyone of any age can be affected, but children under the age of four years are very susceptible.
Certain people can be vaccinated against one of the most common types of bacterial pneumonia.
I have been suffering from Plurisy from the past 2 weeks. My wieght continues to go up and down. I get up about 3 times during the night, from coughing attacks, some nights i feel like i am suffocating myself as its hard to breath when coughing non stop. I get up about 2.30 am or 4.40am, then up again at 6 am some mornings. I have been coughing up plegm more than usual lately, and its more embarrassing when you suddenly have a coughing fit in the middle of the shop. All eyes look at you, esspeically now with the SARS virus scare worldwide.
The definition of Pleurisy is : Pleurisy, inflammation of the pleura membrane that lines the chest cavity and contains the lung. Most cases are caused by infection, and many are associated with pneumonia in the underlying lung. Some cases are caused by viral infections. Occasionally pleurisy may occur in other diseases such as tuberculosis, systemic lupus erythematosus, rheumatic fever, and kidney failure. Pleurisy may develop in conjunction with a blood clot on the lung; it may also be associated with the development of fluid in the pleural space between the chest wall and the lung. The characteristic symptom of pleurisy is sharp pain brought on by breathing and coughing. The patient breathes shallowly. If considerable fluid accumulates, the pain may subside, but the underlying lung may be compressed by the fluid and the patient may feel short of breath. On examination the doctor can occasionally hear the inflamed surfaces of the pleura rubbing together and producing a rough sound. Treatment of pleurisy attempts to cure the underlying disease causing it. The pain is controlled with analgesic drugs.
21st August 2003:
For the past weeks I am fighting another chest infection. My local GP put me on Solone tablets (Steroids) for my lung to improve. Dr T wasn’t keen on putting me on these, but I was finding it hard to breath, and getting up 5 times during the night to cough up phlegm and staying awake all day. She made an appointment for me to see a CF doctor last Wed, she I attended, and Dr RS, then took me off the solone, and put me on Seretide, which has steroids in the puffer. This way it goes directly to my lungs, after my use of the nebuliser. My lungs are currently on 62%. They have dropped 5%.
A lot of people ask me, how do you cope with CF, or how does it affect your life? I have written up an idea of what it is like living with Cystic Fibrosis, please click on the link below.
Living With Cystic Fibrosis (CF)
I went to the Dr's because my left side has been that sore. I am phelm still, and sleep upright on 4 pillows. If i am unlucky, as most nights i get up about 6 times in use of my neubliser.
I also went for Xrays and the results came back.
** Heart Size is normal. The lungs are hyperinflated. There is reticular opacity in each and mid zone and lower zone. In the lateral view more confluent areas of consolidation are noted anteriorly.
Early Bronchiectasis may be present. If Symptoms persist, HRCT may be appropriate. The present appearance indicate acute on chronic inflammatory change.**
As my local Dr put it to me was: I have no air getting in my lower/middle section of the lungs. If not treated by anti-botics it will turn in pneumonia. I am talking anti botics for the infection in my lungs, but for the pain she didnt give me any painkillers.
Going back during the week for my spectum results.
Went and saw The CF specialist today, sometimes I feel he doesn't know half the stuff he is supposed to know. When I sit in his office, he sits across from me, and says to me "So whats happening"? "What does the results say"? And its like "Hello! your the ones with the results". And to top it off, he didn't wear a tie, and was very casual. It made me nervy, I guess I like dr's with ties, they look more professional.
Anyway my lungs are currently on 68%. I need to cut back on my Ventolin intake, as I have been taking about 6 a day instead of 4. I also need to go onto Salt Tablets daily. The Lady said i may feel nausea at first but should go away. I am very low on Vitamin D. I am taking Ostelin and going out in the sun more, for my bones, along with 1 Litre of milk daily.
I also complained to the dr, that I cant drink Alcohol, not even a mouthful to a glass, without throwing my guts up for an hour, and sitting on the toilet for 3 hrs, with bowels cramps. New Year is coming up and I would like to at least have one drink. Anyway I went for a blood test to see if my liver/Pancreas was ok or screwed up. As he said people with liver problems dont drink cos it makes them sick. I am 34 and i feel like I am falling apart.
I went to my local Dr’s in sunshine to get the results back from my blood test I took for my liver. The dr explained it to me in an easier way. For FOOD (Total) Protein the reference range is between 60-80 mine is on 81 – That’s a good sign, my liver breaks down my food rather well. For the Alcohol/Drink range the reference is between 9-36 my level for Gamma –GT (Gamma Glutamyl Transpeptidase) is 4*. The Dr said is unusual for it to be that low. If I was an alcoholic my Gamma –gt would be way over 36.
My local Dr, doesn’t want to treat on the Specialist toes, as I am a patient of the Alfred now, she isn’t sure on what to do. But she said something has to be done about it and it’s really strange.
I tired to call Dr. RS and F and the Alfred today and left and message for them to call me back I called them at 9.30am, its now way past 6pm. I am seeing my local Dr tomorrow, and I will be discussing it with him. Funny thing is though I have search the Internet for low Gamma gt and I can’t find anything, not even one web page.
L called me from the Alfred Hospital today, after talking with Dr RS yesterday after I called. She told me that I am allergic to alcohol. And that Dr RS isn’t concerned in the slightest, and also told me that he wasn’t worried about it. I ask her if I should see someone, or get tablets or something, but she said no need.Its not a CF thing, its more of a one off thing... I am not happy with this. So I went back to my local Dr’s, I told him my concerns, and she wants me to do another liver protein blood test, to see if my gamma is the same, as they could’ve made a mistake the first time around.
I went and had my usual check up at the Alfred Hospital. My lungs have been staying on 69% for a few months now. About 4 weeks ago, at the last appointment the Dr put me on something called Pulmoyzme, Pulmozyme contains DNase, an enzyme that breaks down the long strands of DNA found in the mucus of poeople with Cystic Fibrosis. This enzyme which is alomost identical to the nuturally occuring one turns thick mucus (A) into a liquid (B). Modern Technology has now made it possible to produce large quanties of the enzyme for the treatment of Cystic Fibrosis.
Without a health card care it costs $2,200, with a health care card it costs $3.70. In the first 2 weeks of taking it, as it belongs in the fridge all the time. It gave me a cold with a runny nose and a slight sore throat. I could hardly breath properly, and I had chills in my body, where I could feel my bones get cold. I stop taking it, so I could breath out of both nostrils again. I mentioned this to my Dr yesterday, and I guess its one of those things as its didn’t agree with me. I am still taking my current medication, daily. My weight gain has dropped I was 56 Kilos, now I am 53.4 Kilos. My lung capacity has also dropped to 53%. Over a 4-week period, I lost 4% per week, off my lungs.
The Doctors wanted me to come in next week for one of there experiental testing which is:
Full Project title:
The prevalence and significance of gastro-oesophageal reflux in adults with cystic fibrosis before and after lung transplantation, together with the effects of physiotherapy airway clearance techniques on gastro-oesophageal.
As they explained to me: The specialist will be inserting a micro chip/camera up my nose, down to the back of my throat, and into my stomach, which the other end will come out through my nose, down the face and side of body, attached to a mini computer which I have to carry around for 24 hrs. This is seeing how much stomach acid I have, when my reflux occurs and how my food is digested and how long it takes to do this job.
I thought about this for a while, and called her the next day as I had some queries. This is not for a lung transplant, as I thought it was, I was sitting here thinking, “they never told me I am due for one”, and I started to get worried thinking are the CF doctors telling me everything?
But I also decided not to do it because of many reasons. I feel uncomfortable with anything up my nose. I sneeze for hours. Also my daughter gets up during the night, like myself, just say I go to the toilet and forget to take the mini computer, the mini micro will be ripped out from my nose, or if I throw up, will the cord come up and be tangled around my tonsils. Just the thought. I can’t do this, and I told them.
19th October 2005:
***** DISCLAIMER: None of the data or information mentioned or contained in this site is intended to be used or construed as a substitute for professional medical care and advice by your health practitioner. The author assumes no responsibility for readers use of the material and opinions expressed.*****
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