No wonder asthmatics don’t go to hospital early!

One of my previous posts I titled as the most terrifying experience. At the time I thought it was, but sadly it was not and last week it went to a whole new level of scariness.

I had not been discharged long but I needed up needing to go back to hospital.

It all started well. I was seen in resus and after a few hours was stabilised with IV Magnesium, IV Salbutamol, IV Hydrocortisone and lots of nebulisers driven by oxygen. All was going well. My care plan was being followed and all going well. Maybe a little to well!! Coming out of resus was where it all went downhill and led to the worst time I have ever had.

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Being moved from resus to IC/HD is always a good move so when they said I was moving I was happy. It meant I was getting better and on the road to recovery. This was not the case this time. There was a plan in place for when I was moved. To continue on back to back nebs to keep on top of my attack but this was not done. I had to wait an hour and a half and ask over 6 times to get a neb to be told by a nurse I was fine and he was too busy and would come back to be later. By this time my blood pressure was rising my heart rate was rising and my oxygen was dropping. This was not the time to say I was fine and he would come back to me. I felt the nurse didnt think I was ill. I thought he thought that because I was young I would be ok. I was not ok. I was terrified. It was harder and harder to breathe and I thought by going in early I would be seen early and be back out again. I kept asking for nebulisers and not getting them. writing it like that makes it sound like I was unhappy because I was not getting what I wanted but it was far from it. I was desperate for a neb. My chest was getting tight and I really couldn’t breathe. On top of that I was scared and thinking all this stuff about what might happen. Eventually I got to see a Dr who questioned why I had not had the nebs etc I was meant to. I felt relief at being given a neb but also because I thought the plan would be followed again.

I got two nebs but after that it all slipped away again. I tried to tell the nurse about my care plan but was told he didnt need to see it and wasn’t his concern. I kept asking for nebs but was being told he was too busy. I am sure he was busy but all the times he told me he was busy would have taken up more time than actually giving me a neb and the amount of time he had to look after me in the long run. I ended up using my own supply of nebules to treat myself as I felt so scared and want to get better. By this time I had had enough. I tried to get up so I could get dressed but I fell and really hurt my knee but at this point a combination of lethargy, fear, tiredness and the effects of the asthma attack were taking their toll and I decided it was time to self discharge myself. It was rash but I felt it necessary. It got the attention I needed and the Dr came over to see me with the nurse in tow. I also ended up being reviewed by intensive care. I told the nurse that this was all on him and if I went to ITU or had a prolonged admission it was on him and I strongly believe it was. His attitude was horrible and it has made me really question going into hospital and getting help. If I saw him again as I came into A&E I would refuse to go in as I really thought I may not get out of A&E in his hands.

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After falling and threatening to self discharge I was moved through to the assessment unit where I was in such a state they wanted to give me lorazepam to calm me down. Thankfully the Dr had been filled in on what had happened and knew I just needed out of A&E and I would be ok and they were right. The rest of the admission was fairly uneventful but I shall blog about it another time.

I wanted to concentrate on my experience in A&E. I have had so much time to think about it and the consequences of it. A few years ago the national review of asthma deaths was published highlighting the shocking statistics of asthma death and admissions to hospital. From this I tried my hardest to make sure I was very proactive with my treatment and get help quickly to as to make asthma less of a killer than it is. How can we do this if asthma is not taken seriously in hospital where it is meant to be safe and you are meant to be looked after.

I am lucky in that I have been to hospital a lot and luckily never had such an experience and I knew what I needed. What would have happened had I been new to asthma or not known what was happening. I was able to self medicate to make sure I was ok but others may not have been so lucky and the statistics would just get worse. 

The support I have received from Drs, and the respiratory nurses has been fantastic and I have had the help to come to terms with what has happened and also will get the help to put a complaint in about the treatment I received. It is important that feed back is given because if I have been so scarred by events imagine what someone else could have been. They may have taken themselves out of A&E and died from not getting help for their asthma. Its important to get the message out and get people to see how serious asthma is.

I have never made a complaint to a hospital about the treatment I received but I feel this time it is so important that I do for a number of reasons. I was still trying to come to terms with my previous hospital admission and how I went down hill so quickly in a safe environment, I also had lacrosse trials of Scotland and it was my 30th birthday which I had a number of plans for. All of which I missed as a result of the poor care I was given. I may be unfairly putting all the blame on one person and that person being the nurse but to me it is no
t unfair. The way in which I was spoken to and the lack of respect and care I was given has left a huge black mark and really scarred me. For my own sanity I need to deal with this and make it known what happened and what is being done to resolve it.

It will take a lot for me to get my confidence back and feel safe going to A&E again. I know I will have to go back to A&E at some point and the whole reason I do everything about raising awareness for asthma is to changes opinions of asthma and get people getting help early by taking it seriously. If I don’t feel confident and don’t go to hospital for help then I am a hypocrite and should stop doing all the raising awareness and campaigning I do.

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As you can tell this has left a really black mark on me and I will get over it but it will take time. I do want to add that as a nurse myself I do understand how busy days/nights can get and we can’t do everything the patient wants us to do but when you see them laughing and joking and talking about nights out standing round the computer it is fair to see and hear they are not as busy as they are saying and when I see them as a patient doing this it makes me really angry.

I would hate to be in this situation again which is why I am going to share it with everyone I can. I could have gone home but I managed to stay and ended up receiving some of the best care I have had and did get better. I was not able to trial for lacrosse, or be at home for my birthday or go to any of the planned meals etc but I am now home and will enjoy that.

For now I will continue in the work I am doing to make sure that asthma is taken seriously and awareness raised.

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Tired of this now!

After a busy time away in Manchester and having a bit of an attack on the train back up to Edinburgh I was ready to just drop in a heap and I did for a couple of day. Thursday and Friday I really didnt do much other than using my nebuliser a bit to try and get over this chest thing I seem to have caught.

Friday night into Saturday I really didnt feel great but thought it was just the weather because it was awful and it just kept changing. Atmospherics can really effect my chest so I thought maybe it was that. I went to bed early and was tossing and turning. I ended up getting up at 1 am and went to Tesco to get something to soothe me. I got some ice fruit stuff which kind of helped but I felt like the air was stuffy. I eventually settled after a few nebs about 6am but woke at 9am with my heart thumbing. It was going nuts. It was up at 140 and I honestly thought it was about to come out my chest.

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I called NHS24 which I always think is a bit of a gamble as I worry they will hear my history and will just send an ambulance. I had a really good nurse who I explained what was happening and was wanting to see if I could see a GP in out go hours to get some atrovent for my chest. I hoped this would mean I could stop the salbutamol an then my heart rate would just settle down. I saw a GP but she was worried as my heart was up at 180 and my breathing was not good- probably due to my tachyness. I have never seen a GP so worried. All set for a blue light 300 yards up the road. Thats happened. I felt like an idiot but then the paramedic was concerned and managed to get 2 cannulas in me. I was starting to worry myself at this point as I really didnt think I was that unwell and all I wanted was some atrovent. But my ECG was showing prolonged QT waves again so it had to be checked and we did need to get my heart rate down. By evening time it was down and I was home and could relax. Of course I couldn’t and was paranoid that if I moved then my chest would get bad and then I would need a neb and then I would make my heart rate go back up. It was down to a low 120 by the night.

Yesterday was the first time I have felt kind of scared as I had no control of what was happening and had no idea how to stop it. I know with my asthma I am in control (to an extent), I can ask for the nebs when I need them. I know what I can do and can’t do, I know how to sit to make it easier to breathe, but this was something different- there was no way to control it. It was out of my hands and the Drs hands to some extent as it was a bit of a waiting game to let the meds and fluid work to bring it down. It did scare me. I get scared with my asthma my it is a different scared. I am scared because I can’t breathe but I know I am in safe hands and will be ok- but this was different.

Sitting today reflecting back I am just fed up. I keep wondering what next is going to go wrong and will my body give me a break. I have been fairly well recently. I have not been in hospital nearly as much but at the same time I have not been doing as much. I thought my not pushing my body so much I would not make more things go wrong but maybe Im not right. Maybe it is just more challenges to try and over come. I am so greatful to all my friends who stick by me and give me wee messages of encouragement.

Back to work tomorrow after a week off but I feel I could do with more time off as just a bit tired after the last few days. What a way to end annual leave!!

What I take and what it all does!

Part of having Brittle Asthma means quite a strict daily medication regime but also the constant quest for the magic inhaler, pill or nebuliser which might just be life changing or not even life changing but give you that bit more freedom and better quality of life.

A common theme between brittle asthmatics when first meeting someone is to ask about what medications they take. Not to be nosy but for that inhaler they take that you might not have tried or something different which might help!!! I have a page where it has my medication but I thought I would do a post about the regime I follow and why I do this and what the point of each medication is.

During a normal day I have four medication sessions so to speak: breakfast, noon, dinner and before bed! As I take several medications more than once a day I am going to explain each medication after my regime.

Breakfast: Salbutamol and Atrovent Nebuliser and a saline nebuliser if needed. Seretide and Flixotide inhaler, Nasonex nasal spray, Prednisilone, Theophylline, Fexofenadine, Citirizine, Calci Chew D3, Lanzoprazole, Cyclizine, Nefopam, Co-Codamol, Laxido,

Noon: Salbutamol and Atrovent Nebuliser (if needed. I don’t always feel the need to take this set of nebulisers), cyclizine, nefopam and co-codamol.

Dinner: Salbutamol and Atrovent Nebuliser, Cyclizine, Co-Codamol, Lanzoprazole and Calci Chew D3

Before Bed: Salbutamol and Atrovent Nebuliser along with saline if needed, Seretide and Flixotide Inhaler, Nasonex nasal spray, Theophylline, Chlorophenamine, Co-Codamol, Nefopam, Amitriptyline and Montelukast

When my asthma is a bit better I substitute the atrovent nebulisers with a once a day inhaler tiotropium and my salbutamol nebulisers with salbutamol inhaler however I rarely don’t take salbutamol nebulisers except during the day when at work.

The nebulisers I take:

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I take Ventolin aka salbutamol in either 2.5mg or 5mg doses. Salbutamol is a short acting bronchodilator which helps to relax the smooth muscles in the airways which have constricted causing wheezing and the feeling of breathlessness. I also take Atrovent aka ipatropium in a 500mcg dose if I am not taking my tiotropium inhaler aka Spiriva. Both Atrovent and Spiriva are drugs commonly used in COPD but are becoming more common in the treatment of difficult asthma. It is an anticholinergeric drugs which blocks the muscarinic acetylcholine receptors in the smooth muscles and stops the bronchi from contracting due to inflammation.

I have two nebuliser devices depending on where I am. I have a mains powered nebuliser called a Pari Turbo Boy which is fantastic but not possible to use when out and about so I use a Beurer IH50 portable nebuliser which runs of batteries and much handier than needing to find a plug for the Pari!

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As well as the nebulisers I also take 2 different inhalers regularly and then a ventolin inhaler as and when I need it. The main 2 inhalers are known as preventers. The first is Seretide 500 2 puffs twice a day increased to 2 puffs 4 times a day when unwell, which is a combination inhaler made up of fluticasone and salmeterol. The fluticasone is an inhaled cortico steroid which dampens down the inflammation in the lining of the airways in the lungs. The inhaler works locally on the lungs and very little of the steroid component is actually absorbed in the circulating system. The salmeterol is a long acting bronchodilator which has a 12 hour working duration compared with the 4-6 hours of the salbutamol inhaler. I also take Flixotide 500 2 puffs twice a day can be increased to four times a day, aka fluticasone which is part of the Seretide inhaler. Due to the doses of inhaled steroid I need I was taking a higher dose of Seretide however was suffering with a lot of cramp due to the higher dose of the salmeterol so I have a second inhaler with only flixotide.

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Twice a day I use a nasal spray due to allergic rhinitis associated with my asthma. The nasal spray is Nasonex aka Mometasone which much like the inhaler is a steroid based medication which acts locally on the inflammation in my nose and sinuses.

Along with my nebulisers, inhalers and nasal sprays I also take numerous tablets.

The most important one is Prednisilone. This is a steroid tablet which again dampens down the inflammation in my lungs. The dose I take varies depending on how well my asthma is controlled. If I have an acute episode I will be given 40mg and then reduce as I see fit normally by 5mg every week down to my maintenance dose of 14mg. This drug is one I love to hate. It is really good for when my asthma is really bad but it does with some awful side effects which I need other medications to control. These are and anti emetic Cyclizine 25mg three times a day, a proton pump inhibitor which protects my stomach from too much acid called Lanzoprazole which I take 30mg twice a day, I also take Calci Chew D3 Forte twice a day which helps t protect my bones as one of the side effects from prednisilone is bone thinning. The D3 Forte part increases the vitamin D level in my blood which many asthmatics can lack. Prednisilone also gives me very bad restless legs which I take Amitriptyline 20mg at night as my restless legs are worse at night.

Other tablets specifically for my asthma are Theophylline (Uniphyllin) which is a slightly old style drug which requires close monitoring as you need to adjust the dose to get a therapuetic dose. Too much can make you toxic and very unwell and subtherapuetic will result in less asthma control. I take 300mg twice a day as it is a modified release tablet and taken every 12hours to maintain your blood serum level. It is difficult to explain how it works. It also has some adverse side effects which I take the above tablets for. Another one is Montelukast (Singulair) which is leukotriene receptor antagonist. It works by blocking a substance called leukotriene, which helps to decrease certain asthma and allergy symptoms.

A big part of my asthma is allergies associated with it and hay fever. I take three different anti histamines. Fexofenadine (Telfast) 180mg once a day in the morning, Citirizine 10mg once a day and at night I take Chlorophenamine 4mg. I take this at night as it has a bit of a sedating effect which is not good during the day.

I also take painkillers everyday at the lowest dose possible although this has to get increased when I am struggling with my chest. I get a lot of pain in my lower left lung where I have had repeated infections and have a lot of muscular pain as well as previous cracked ribs. For this pain I take Nefopam 30mg three times a day. This can be increased up to 90mg three times a day but I don’t want to take a high dose. I also take CoCodamol. During the day I take Co-Codamol 8/500 x2 three ties a day as it can make me feel a bit dopey but at night I take 30/500 x2 at night. I need to take Macragol (Laxido) sachet either once or twice a day as co-codamol can cause you to become constipated.

Its quite a lot of medication. I m really lucky that i have a fantastic pharmacist who has set up a dosette box for me so I don’t need to have boxes and boxes of pills. I just collect a tray once a week from my chemist and it has all my pills in it ready for me!

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Every three months I have a Depo Provera Injections which maintains my hormones at a constant level as we worked out my periods made my asthma worse so by keeping hormones at a constant level this helped.

I regularly require antibiotics such as Amoxicillin or Doxycycline for chest infections and if presenting with an acute attack am given IV Magnesium, IV Hydrocortisone and IV Aminophylline or Salbutamol.

Just now I am at the end of my tether with my health and have asked my consultant in a desperate plea to see if I could try Methotrexate as a steroid sparing agent. I don’t care about the side effects I just want some life back. This medication is known as a steroid sparing drug which can help people come off prednisilone. I need to wait and see if she thinks this is a good idea or not. I need to do something as I can’t stay as I am.