The Verdict!!

RGkMWRzrS0mzufaAU8z4HQ.jpg

I have been fairly quiet recently mainly because I was terrified. I have had 3 doses of Mepolizumab and was due to attend clinic and see my consultant for the verdict and find out if I am staying on it or not.

The good news is that I am staying on it for now.

Clinic went well. I am so glad that I had that horrific hospital admission that made me decide to change consultant because it has been the best thing I have ever done. It has come with some issues but overall it has been one of the best things I have done.

I had lung function and FeNo both of which were marginally better but what I have noticed is that I am more stable overall. Recording my peak flow has been super helpful and I can identify what causes were when they dropped whereas before I had no idea and it was all over the place. I would love my peak flow to increase but I am happy for stability over gains (gains are unlikely due to the fibrosis in my lungs now).

The other difference this consultant has decided on is with regard to my steroids. Previously it has been a rush to get me down to the lowest dose possible and see how I go but that has always ended up badly and I spend more time on higher doses and it felt like I was on a rollercoaster all the time. Now, as much as we want to get me down to a reasonable dose and hopefully off prednisolone (wish me luck) we are acknowledging what has happened in the past and he kept me on 20mg which felt like ages (3 months) and then alternating 20mg and 15mg daily (2 months) and now I am to stay on 15mg until February March time and then we will readdress reducing it further.

So many people have asked me if I think the mepolizumab is helping. It is so hard to stay. I think it must be as I have been more stable but I worry that this is due to the prolonged prednisolone and super slow reduction but what I am hoping that it is a combination of both. I guess the time to tell what is doing what is if I get unwell (touch wood I don’t) and I can see how quickly I can respond to treatment and not need invasive treatment. I am aiming for this as know hospital is going to happen as my consultant has said this. He said he would have no worries about admitting me to hospital if either he or myself thought my asthma was not great.

We are also changing one of my inhalers. For the first time in as long as I can remember I had an outpatient clinic where my medications were reviewed and we looked at what I needed to keep taking and what could get binned. The only change he wants to make just now is removing the seretide inhaler and replacing it with Relvar a newer once daily preventer inhaler. He wants me to continue taking some extra fluticasone at night to tide me over as I still have quite significant dips in my breathing at night.

Im happy I now have a plan. Know roughly what is happening with my asthma and asthma care. Over the winter period I will be seen every 2 weeks. Monthly clinics with my consultant and then in-between I will be up with the asthma nurse specialists getting my injection and review there. Also should there be an issue I just have to call in.

The one thing out of all of this which I cannot let go of is why did it take throwing my toys out the pram and move consultants to be able to get in control of my asthma or have a plan to get control of it. I just want answers and I know I won’t get them but I am now trying the treatments I have been asking about for a good number of years. I know dwelling on it won’t help but when its your life that has been suffering it is hard.

Breathing tests every two weeks- every patients nightmare

For any asthmatic or any person who needs to be seen in a clinic or Drs surgery they will more often than not be requested to do some kind of breathing test. In a GP setting this tends to be peak flow measuring your peak expiratory flow rate in litres per minute. Pretty much every asthmatic should have a peak flow device and if not you should be asking your asthma nurse or GP for one. It is one of the most useful home tools to identify how well you condition is.

However as a condition progresses or becomes more challenging to keep in control further testing may be needed. Patients attending any respiratory clinic in a hospital will probably be sent to the dreaded lung function room first to a variety of different breathing tests from FEV, FEV1 or perhaps flow loops.

I hate lung function, mostly because my lung function is not as good as it used to be but also because I have so much pain for some reason in my left hand side at the lower lung area. We are not sure why its sore but most likely muscular but nothing that serious. I find doing my FVC or forced vital capacity is not a problem because breathing out all the way is not too hard unless I am having an attack. My issue comes when I have to do my forced expiratory volume in 1 second. You have to take a big breath in and then blow out as hard and fast as possible until empty. This is where I get sore. I just always get a really sharp stabbing when I move from breathing in to breathing out hard. It stops me in my tracks. It makes me feel like I have been winded or kicked in the ribs- so understandably I don’t like doing it.

More recently there has been a new device introduced into the lung function world and the lung function room which I don’t mind so much, now that I have got the hang of it. It is FeNo or Exhaled nitric oxide. FeNo is measuring the amount of inflammation present in your airways which can identify how well controlled your asthma is. This is an odd test where you have this handheld white box thing which you need to breath in through and out though at a certain rate. I have done this test with a number of different people who all have different strategies. The aim of the test is to keep a cloud between two lines by breathing out through the machine at a certain rate. You can do this by watching yourself in a mirror so you can see the cloud which is on the side of the machine facing away from you or you can have the pulmonary function technician telling you to blow harder or softer which is very amusing and totally puts me off. Even watching myself puts me off as I just laugh. I have got used to the face I make and don’t laugh quite as much and don’t need as many attempts as I used to. I think I would on occasion leave them all shaking their heads when they had a busy clinic and was laughing at myself thus holding proceedings up!!! (I will find/ get a video of myself doing the FeNo test so you can see what I mean!!).

From what you have read so far you can probably guess that I don’t like doing lung function. I don’t think I will ever like doing it, so you can imagine when a few months ago in clinic my consultant suggested coming for lung function every two weeks and then emailing her the result. I was not amused and she went out of the clinic room to speak to lung function to sort it all out before the news really set in. When she was away all sorts of things were going through my head and thinking of ways I could get out of doing lung function every 2 weeks but I couldn’t think of much as I work in the same hospital as I work in so could not say I was too busy and wouldn’t be able to get away!!

I was so relieved when she came back and told me that it would only be the exhaled nitric oxide (FeNo) I would be doing every 2 weeks. I was relieved that none of the other tests would need to be done!! I was a bit skeptical at first about what FeNo every two weeks would achieve but now I am 2 months down the line and can really see where it has been really useful and helped me and my consultant make progress in my prednisilone reduction. Before it was a case of reduce the prednisilone by a few mg and then see how I did. Most of the time I would reduce for a few months, be fine and then have an attack which meant y dose was increased again. This time was different. I would do the FeNo test then email my consultant tell her the result and she would make a recommendation about what to do with my dose. So this way we know what is going on at the point of reduction rather than waiting and seeing what happens. I have repeated the rewards from it as we have managed to stick to the plan and I have been managing to go every two weeks pretty much give the odd day late here or there!!

This is the first time I have felt an element of control in my asthma. Perhaps it is a bit of a psychological result as well because I have had so many failed attempts at medication reduction when we go by the wait and see plan however now with FeNo I know I am good, bad or indifferent so have that reassurance that we are reducing at the right time.

I guess the two weekly lung function or as it turned out FeNo was not as bad as I first thought!!! It has been really good and the benefits certainly are better then the pain of going down to pulmonary function. Fingers crossed for continued progress. I am sure there will be the ups and downs but I guess it keeps like interesting!!

I must recommend FeNo to anyone. More hospitals are bringing it in and give a far better picture of how your lungs are actually doing.

Clinic and next steps!

Yesterday I was a bag of nervous, full of fear and also there was a hint of excitement at what may come of going back to see my old consultant again. She knows me the best. I have known her my whole time since I moved back up to Edinburgh. It was a relief to see her again. She just gets me and knows what is important to me and helps me to be able to do what I want to.

What was the outcome of seeing her?

We have a plan. A plan to reduce the prednisilone and much more intensive than was before. In the past we would just reduce and see what was happened. Instead this time I have to go to pulmonary function every 2 weeks to have a FeNo test.  I will then be in email contact with my consultant to give her the result. Depending on the result we will reduce or stay on the same dose of prednisilone. This way I hope that I won’t have the dips and crashes I was having when reducing. We can see exactly what is going on and when. Fingers crossed this will prevent any attacks and I can get off the prednisilone once and for all. Its going to be a long road but hopefully one that will be worth it.

I am also going to see a psychologist to refresh my strategies for pacing myself and dealing with my asthma. I am not the best at getting the balance right between too much and too little. As a result I tend to have peaks and troughs  in my energy and ability to do things. I want to get back into the right balance of work and life.

Even though not a huge amount has happened in the appointment and no big medication changes or anything I do feel like I managed to get a lot out of it and have the reassurance of being under someone who knows me. It is almost a safety net in a way. I also know she will tell me if I am not doing enough and tell me if I do too much which is a good thing.

Hopefully this plan will be positive and have a positive outcome.