Hi from a new member

Hi all,

My story

Im Kate, 16 years old and was diagnosed with asthma last year. In the past 2 months I’ve been in hospital twice. The first time was really scary and they couldn’t control it at my local hospital so I was transferred to a kid hospital and put in Intensive care on CPAP (non-invasive mechanical ventilation, anyone else been on it??), just to help me a little. Along with IV salbutamol and everything else they pumped into me I recovered slowly. The second time was about a week ago. I was at school just sitting in class and I started to cough, then wheeze then about 5 minutes later was gasping for air. I was taken to hospital and they give me continuous nebs for 2 hours, then IV salbutamol, prednisone, and IV magnesium. The strange thing was that my oxygen stats where still fine at 96%. My heart rate and respiratory rate was through the roof but my oxygen was fine (I was on oxygen) and so where my carbon dioxide levels. But later my oxygen stats dropped to 70%. I was put in resus and they where preparing to intubate me, finally they got my oxygen back up into the 90% and put me in High dependency unit. Every time they took off my oxygen mask my stats would drop back to 70%. I spent 2 nights in HDU then got transferred to the ward and was outta there in a few more days. Each time I got put in hospital it was quiet serious but there didn’t seem to be a trigger. The first time I was asleep and the second I was sitting in class. Since January I have been on prednisone (not always on high doses, but most of the time). Im also on seretide, singulair, ventolin (nebs and inhaler) nasonex and flunisolide.

My questions

Does anyone else seem not to have any triggers?

Has anyone been on CPAP for an asthma attack?

Does anyone else’s oxygen stats behave like mine? (really good then a sudden drop?)

That’s it I think

Love

Kate

xxxx

2 Replies

oldestnewest
  • Hello Kate... from another Kate!

    Welcome to AUK from Down under.

    I am brittle too! there are a few of us lurking here on these boards so you should get some good advice from various people.

    Other people reading this thread - this is at the severe end of the asthma spectrum and most people are easily controlled!

    Yes, I have attacks out of nowhere too!

    Yes, My sats behave too when on O2 and can drop through the floor, though that doesn't often happen now, unless they remove my O2 and then it goes down. Though when I have real humdingers they do drop but I use adrenaline in the form of epipens to stop the drop!

    I haven't had CPAP though. ( there are some people here who have)

    Your emergency treatment sounds just like mine - nebs via O2, IV Magnesium, IV Salbutamol or Aminophylline.

    I am also on permanent prednisolone, though varying doses, along with nebs and also a subcutaneous infusion of ventolin that I can set up at home when needed (not as powerfull as IV ventolin though)

    Are you under a consultant? There are other add on meds that you can try.

    I am not in a possition to suggest them though as we should not give direct medical advice here. One of our medically minded peeps could advise here if needed.

    Where abouts in Australia are you?

    anyway, I hope I have helped a bit!

    Kate

  • Hi Kate,

    Welcome to Asthma UK, I'm sorry to hear that you've had such a rough time recently, it does sound like you've had some very scary experiences. I hope you'll find that this site is a good source of support and information, please do feel free to ask any questions that you think of.

    There are people posting on here with a range of severity of asthma, including a disproportionate number of people with brittle asthma or asthma at the severe end of the spectrum. I always say to new members that they should not be put off or frightened by reading about accounts of poor control, hospital admissions and Intensive Care admissions, because asthma does not have to be like that; the same thing applies to you, even though you have had some of these scary experiences already. You should not assume, just because these sorts of experiences are common on here, that you have to accept them as part of asthma. The goal of asthma treatment should always be to try and prevent these sorts of attacks from happening.

    Having said that, there are some of us on here for whom that is not possible. I have had brittle asthma for about 12 years, since I was 18 years old, and have had many attacks similar to the ones that you are describing. They do often come out of the blue (I have had them when I have been asleep, too). Whilst I have all the normal inhaled allergies (pollen, dust, HDM, fur, feathers etc) my 'brittle type' attacks are not associated with any clear allergic trigger, and can deteriorate and become very serious very quickly. This does make them very difficult to plan for and deal with, both practically and psychologically. There are quite a few people on here who have attacks of this nature, so people do know what you are going through with this.

    What you describe with your oxygen sats dropping suddenly is not unusual in the context of severe/brittle asthma. In general, sats are only one of the things that doctors look at to consider how severe the attack is - they will also look at things such as your respiratory rate, heart rate and blood gas results (oxygen and carbon dioxide levels). It is perfectly possible to be in a severe asthma attack and have relatively normal sats, particularly if you are in A&E and on 15 L/min of supplementary oxygen.

    If you are having attacks of this nature, you need to be managed by a specialist respiratory consultant with an interest in brittle/difficult asthma. Unfortunately as you are in Australia, I don't have any names of consultants to suggest that you see, but if your consultant is a general respiratory physician who doesn't have a particular interest in difficult asthma, this is definitely an avenue that it is worth going down. Over the years, I have seen a few different people who have an expert interest in this area, and whilst none of them have been able to stop me having sudden onset attacks or Intensive Care admissions, they have all added to and improved my care. A specialist consultant will have access to tests and treatments that general respiratory consultants will have less experience of. They will investigate you thoroughly, usually with full lung function tests and possibly rays or scans of your chest, to rule out other respiratory illnesses other than asthma.

    There are a few other things you could consider, treatment-wise, if you are under a specialist consultant. They may want to think of using a steroid sparing immunosuppressive drug such as methotrexate, azathioprine or ciclosporin to reduce your dependence on prednisolone. These are strong drugs that are not suitable for everyone, and may have the side effect of causing increased infections. Another option that many people on here are on is a continuous subcutaneous infusion of a beta agonist (a bronchodilator) - usually terbutaline, but sometimes salbutamol. Again, this has its side effects and disadvantages, but can be very useful. These are highly specialised treatments that should only be started by experts. There is a lot of information on both topics on these boards, and many people with experience of them, if you want more information.

    A specialist consultant will also be able to consider other medical conditions that may be contributing to your asthma being poorly controlled or you having sudden onset attacks. Gastro-oesophageal reflux can cause worsening of asthma symptoms and poor control, as acid refluxing up your oesophagus can spill over into your lungs and irritate them. You can have significant enough reflux to have this effect without necessarily having the typical symptoms of indigestion or heartburn - this is known as 'silent reflux'. Medications for asthma can also worsen reflux - bronchodilator medication such as salbutamol and aminophylline/theophylline can dilate the valve between the stomach and the oesophagus and make it easier for acid to reflux up. Reflux can be investigated, but the investigations are quite invasive, so many consultants prefer to treat you and see if this makes a difference. The standard treatment is with drugs known as Proton Pump Inhibitors (PPIs) such as omeprazole, lansoprazole, and these drugs are normally very well tolerated with very few side effects.

    Other things that a specialist consultant may consider as potential contributors to your asthma - Vocal Cord Dysfunction is a condition in which your vocal cords move abnormally during attacks, and this makes it more difficult to breath in. This can coexist with asthma and can be responsible for some of the severe sudden onset attacks seen in brittle asthma. The treatment is slightly different, and usually focuses on breathing exercises which are taught to you by a Speech and Language Therapist to help to prevent the abnormal movements.

    Other things that will be considered are whether you have any allergies that haven't previously been picked up on. Allergies can be tested for by skin prick tests or blood tests. Food allergy is also common in brittle asthma, in contrast to 'ordinary' asthma - the most common allergens to cause problems are eggs, dairy and wheat. Diagnosis of food allergy can be done by blood testing, but is often also done by doing an exclusion diet - this should only be attempted under the supervision of a doctor and a dietician. Many people have found that diagnosis and management of food allergy has changed their lives and their symptoms and revolutionised their asthma control. If allergies are thought to play a part, there are specfic treatments for these, including the new injection omalizumab (Xolair) which is an antibody treatment which directly blocks the action of the allergy-causing IgE molecules in the body. It is an expensive treatment, and certainly in this country, people usually have to apply for special funding to get it - I am not sure how it works in Australia.

    Another thing you may wish to consider, as a female, is whether your hormones and your cycle are playing a part in your asthma. I mention it particularly because I was diagnosed with asthma at about the same age as you, when I was 14, when I hit puberty, and I have always had very hormone sensitive asthma, at some times in my life ending up in Intensive Care every month at that time of the month! It's worth keeping a diary of your peak flows and bad attacks for several months to see if there is a link with your cycle. If there is, there are a number of things that can be done - the treatment is usually some form of hormone treatment, either going on the Combined Oral Contraceptive Pill or hormone injections. I have been on the Pill continuously (without the pill-free weeks that you normally have) for many years, and am now on progesterone injections, and without them I would have a lot more sudden onset attacks. Again, if you think this might be an issue, there is a lot of information on these boards.

    There are a few practical things that you can do to make sure that you are as safe as possible with these sudden onset attacks. Obviously, it's important that people around you know about your tendency to deteriorate rapidly with your asthma. This would include your relatives, school friends and the teachers at your school. I know it can be difficult, and it can make you feel very self-conscious, having people know that sort of thing, but it is the best way of making sure that you are safe. You should also make sure that you carry with you a brief past medical history and drug history to give to any paramedics or doctors who might see you (I used to have all my info on a laminated credit card sized card that I produced on my computer and kept in my wallet; I now have an A4 sheet because there is a bit too much information for a small card). If you have a treatment protocol from your consultant, you should have a copy of this with you too. You may like to think of getting a Medic Alert bracelet or similar that medical personnel will see quickly if they attend you and you are too unwell to explain your medical history.

    You also need to think a little about whether you are safe to go to remote places and how quickly you can get help if you have an acute attack. Obviously, there is a balance to be struck between being safe and enjoying your life, and I would not want to tell you to curtail all the things that you enjoy doing for the sake of your asthma. You do have to be a bit careful, though. I usually make sure that if I am holidaying I am reasonably close to a hospital with an Intensive Care department.

    In terms of medical things that can be done to manage acute attacks and make things safer - it is important that you have a clearly drawn up treatment protocol from your consultant about what to do in an acute attack. This will include thresholds for admission, investigations like blood gases, and what treatment you respond best to. It is difficult to advise on this, as this is one for your doctor to decide really, and everyone is different in terms of what they respond to. Personally, I always used to respond very well to IV aminophylline, so that is top of my list on my protocol. If you respond better to IV salbutamol, you may want to have that on your protocol.

    Many of us who have brittle asthma and are prone to sudden onset attacks carry Epipens or other adrenaline autoinjector pens - these are carried everywhere and are used at the first sign of a bad attack. You are probably more familiar with the idea of people carrying them for severe (anaphylactic) allergies, but a small minority of us do carry them for asthma too. Again, this is something that needs to be initiated by a specialist. Using an Epipen is absolutely NOT a substitute for other treatment or for going to hospital - in most cases, the Epipen will not terminate the attack, but will just 'buy time' while the ambulance can get there and get you to hospital. You still need to be in hospital, both because of the severity of the attack and due to the potential severe side effects of the Epipen, which can include heart arrhythmias.

    I see from your profile that you also have salbutamol nebs at home; these can also be very useful in sudden onset attacks, again to buy time while the ambulance can get there. Home nebs should, however, be used with caution and only under close supervision and strict guidelines from a hospital consultant. The danger is that it is easy to be falsely reassured by the fact that you have nebs at home - as you discovered, sometimes during an acute attack nebs do not work, and by the time you reach this stage, you may be very unwell and certainly need to be in hospital. You should have a strict limit to the amount and frequency of neb use at home before you call an ambulance - if you do not, please do discuss this with your consultant. Some of us are only allowed to use a neb four hourly, and any requirement to use more than this will prompt an immediate trip to hospital; others will have a protocol that allows them to use x number of back-to-back nebs, or y number of nebs in 12 hours, before going to hospital. These guidelines are very individual, and are usually decided on by our consultants in consultation with us based on our medical history. You should not assume that something that appears safe for someone on here is safe for you, and if in doubt, you should always err on the side of caution and go to hospital.

    In terms of your question about CPAP in an acute attack - non-invasive ventilation is being used increasingly to treat acute asthma, and there are a few studies ongoing to see if it is of any value. It's more usual to use Bilevel Positive Airways Pressure (BiPAP) than Continuous Positive Airways Pressure (CPAP), especially if your CO2 is on the high side or is rising. I have had BiPAP on a few occasions in the past in acute attacks, although it is usually not successful in me due to the speed at which I deteriorate, and on all but one occasion, I have subsequently ended up being sedated, intubated and invasively ventilated.

    I realise that I have covered a lot of information in this post, and that some of it may sound quite frightening. Please don't be frightened or put off. It is as well to be prepared for severe attacks, but you may well not have another severe one. Asthma is unpredictable and can go in good phases as well as bad phases. Although I have had asthma for 16 years and brittle asthma for 12 years, I have had very good periods during that time. I've been able to go to university and get a medical degree, work full time as a medical doctor, get married, travel and generally enjoy life. My life is a bit more restricted now, as I have other medical problems as well as the asthma, but a lot is possible with brittle asthma, and we have a lot of inspirational members who have busy lives working, travelling, bringing up hoards of children and doing other exciting things despite their conditions.

    Please do feel free to ask any questions that you want to, and keep in touch and let us know how things are going for you. Do post or send me a Personal Message if you want to chat more.

    Take care

    Em H

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