COPD – WHEN THINGS GET OUT OF CONTROL

CpI13dpUIAALSON

Well, things really went pear-shaped for me these past few months. It has been like four months from hell! After a horrible sore throat at the beginning of July it went on to progress to a horrible chest infection towards the end of July and I ended up in the hospital for ten days. But this was not the end of my nightmare it was just the beginning. Huddersfield Royal Infirmary has merged with Halifax. Because of this reorganization, they have now lost their best and most experienced consultant. because I heard from the staff that the changes that were coming into the department she did not agree with and she was right. There is no longer any continuity of care you see a different chest doctor every day as they work on rota sharing the workload. This gets a bit annoying because you are having to explain everything from scratch every day to different specialists. In the end, I wrote a bulleted list on a piece of paper answers to all the questions that they usually ask one of their favorite being what had brought me into the hospital this time?

changes-comingMy Treatment Regime Was Changed!

Usually, when I have a flare up I go into hospital and my consultant prescribes IV antibiotics1834751917ce3b0e284a4d564f37683e--color-blue-splash-of-color and an aminophylline drip for the asthma part of my illness and perhaps a magnesium drip. Because I have brittle asthma my consultant used to treat the asthma first. I have also got aspergillus bronchitis so that does not help the situation. It has always been a long drawn out process which involved about 2 weeks in the hospital to open the airways back up. But this did not happen I had antibiotics in the form of tablets and carried on with the prednisolone which I had already been on for over a week and the drip for two days and then when it started to flare up again because they had taken it off too quickly I was put back on it again for another two days it was a right pantomime. They said I did not have an infection because the white blood cells were higher than they should be but that was because I had been on steroids and because II did not have a temperature and I wasn’t wheezy just tight it proves no infection. I told them that I never usually have a temperature as its normal for me to have a low temperature as I have an download (1)underactive thyroid and that 37 degrees is high for me. Dr. Graham my previous consultant was very happy that we had found a method for getting me up on my feet again. But, she was no longer there and the consultants dealing with me now decided that they were not going to treat my asthma any longer just the COPD. They sent me home after about 10 days very ill and with a DNR on my record, I was distraught. For those of you who don’t know a DNR stands for ‘Do Not Resuscitate’. I can tell you that did not go down very well with me it was the worst thing they could have done. I was very upsetting for my family too. Well it was like showing a red rag to a bull, I immediately got a frame for it and intend to hang it up on the kitchen wall. “No way was I going to let this get ME down” I thought, “I am going to get a second opinion about this”.

After a week of struggling on my own at home, I went back up to the hospital and theyCWef2VOWoAE6Nri sent me home a day later with palliative care and respiratory nurses saying there was nothing more they could do. I will remind you of one thing – I am NOT on oxygen, have NEVER been in ICU and have NEVER had any kind of help with my breathing during a crisis only the normal nebulizer, antibiotics and steroids. I will never forget that feeling of hopelessness that I felt at that time, it completely overwhelmed me and totally knocked the stuffing out of me for a while. It might have been easier if I had a partner to talk it over with but I do not so the feeling of being alone with all this did not help one little bit.

All the hard work I had put into living with this illness and surviving seemed at that14613648-Education-and-learn-concept-pixelated-words-knowledge-is-power-on-digital-screen-3d-render-Stock-Photo moment a complete waste of time. I felt as if they had written me off! How was I to stay motivated? At first, I must admit I almost gave up and then all my facebook friends who have this illness messaged me, rang me and one traveled a full hour when she was ill herself to visit me. It was their words reminding me of how far I had come that made me realize I could not give up ever. I started to use all the knowledge I had under my belt to get better.

During those weeks I was having visits at home from the respiratory nurses three times a week and really struggling to manage. I also had carers in on a morning and afternoon. And with their help and my knowledge after four weeks I started to pull up a bit. However, I am still annoyed with the way they treated me because I really suffered for much longer than I should have done normally. Sending me home faster was definitely not a good thing for me and the stress of their diagnosis did not help one little bit. When I think about going into hospital again I get panic attacks the experience was so bad. Doom and gloom is not good for anyone with a chronic illness while there is a smidgen of hope that is what you have to concentrate on. Just like these beautiful ladies in this video show, you should never give up and a positive attitude is everything! Shame these consultants do not realise this.

A couple of the respiratory nurses that had known me for some years did not agree with the way the consultants treated me either and one made her opinions known to them. All they seem bothered about was keeping people out of the hospital and doing that by any way available to them. They are concentrating on getting people home to leave beds free for other patients coming in but this is no good you must send people home well enough to cope on their own. Is this what our NHS is coming to?

I was losing faith in the system and panicking now and wondering how I could find a doctor who was on the same page as me.  And just when I was thinking there was no way forward one of my COPD friends told me of a contact she had for a consultant at another hospital who she was very familiar with. My friend asked if she could have a chat about what is going on with me on my behalf.  Of course, I was grateful for any advise I could get. She is called Rachael Moses and she is a very busy lady so I was so grateful for her help. Thank God for social media, I contacted her straight away.

edited_img_1544_0

NHS consultant physiotherapist Rachael Moses was chosen from thousands of entries as one of two finalists in ITV’s Good Morning Britain Hospital Health Star Awards.

I sent her an email with all the results of my recent breathing tests and the full story of what had happened and was elated when I received the reply that they did not agree with the DNA going on my file and that I should consult a specialist at Wythenshawe Hospital in Manchester. What a coincidence, I had already been in touch with Wythenshawe Hospital because Professor Denning at the hospital is at the top of his field in treating Aspergillus Bronchitis and I needed some advise. To read more on his involvement and treatments see –Aspergillus and Professor Denning.

Additionally as well as having that department, I found out through Rachael that they have also got Doctors and imagesConsultants who are at the very top of their field in treating COPD and brittle asthma. They are known for having one of the best respiratory departments in the UK and do a lot of research on the subject of brittle asthma and COPD. Why had I not known about them before. I went all the way down to London to see Dr. Kemp when this great hospital was only 30 miles from my front door and I can get transport to take me and bring me home. My GP has now referred me to their team and I really hope that now I will get a specialist who is rowing in the same direction as me! Because there is nothing worse when you are going in opposite directions. So what is our motto for this disease NEVER GIVE UP AND ALWAYS TRY TO STAY POSITIVE?

GlimmerOfHope.001

Is it Food Addiction or Simply a Case of Emotional Eating?

Is it Food Addiction or Simply a Case of Emotional Eating?

“If hunger is not the problem, food is not the answer”

Excerpted from What, Exactly, Is Emotional Eating? | A Black Girl’s Guide To Weight Loss

This is a real problem to a lot of people and I am not ashamed to say that I am one of them. I am addicted to carbs and it is taking one hell of a lot to get it under control, together with my emotional eating this can become a perfect storm, turning into a  high calorie, high carb, high sugar blow out! So what is happening when I have one of these blow outs, am I suffering from emotional eating or just an addiction to certain food types?

Food can become a way to cope with emotional matters, and the repetition of this coping mechanism can breed an addiction. By using food as a means to deal with anxiety, stress, grief, and the like, the body becomes conditioned to crave that process to feel relief.

People often associate pleasure with foods that contain fat, sugar and salt. As innocent as it may seem, this starts at a young age when candy and soda are given as a “treat” or “reward” for good behavior, grades or a celebration. Research studies have shown the reward centers of the brain to light up and release dopamine when pleasurable foods are consumed. Could this be that we’ve conditioned our bodies to react this way? The following is a great way to explain what is happening to us when we feel compelled to eat when not hungry, its from another blog by Erika, she feels that this is what compels us to believe that emotional eating is the answer.

Once upon a time, in a land not very far from your home… lived mankind. No fast cars, no shiny structures, no skyscrapers, nothing. Just man.. rock… and animals.

See, this worked for man because his only task was to hunt wildlife, and gather his kill for his family. That was his responsibility. His purpose was to bring the salt and fat from the animal to the family. Not work, not bills… just hunt. Because life was much simpler then, this was man’s sole source of stress.

One day, man could not hunt. Every time he threw his spear, he’d miss his prey. He just couldn’t catch SQUAT! His family was to go hungry and he just… he couldn’t take it. The stress started to build up inside of him.

Because stress about the inability to eat is the only source of stress for man, his body became used to the eventual chain of events. His body knows: Lots of stress = lack of food coming in. How did his body react? His body decided to hold on to what it had – by way of diminishing the amount of energy his body could exert all at one time, by way of making sure his body took a very long time to lose weight, by way of making sure it held onto every pound and fat cell it could. This bodily reaction would only further compel man to step up his hunting skills… why? Because he didn’t want to feel that way! He didn’t want his family to feel that way! He had to get his caveman hustle on! When man was finally able to tackle that antelope or whatever-what-have-you, the fats and salts in the meat were sooooo satisfying that they would cure man of the bodily reaction to stress.

Compare this to emotional eating. The body’s reaction doesn’t change no matter what variables you swap out. Regardless if the stress comes from traffic, bad work day, or family problems… the body’s reaction to stress has not evolved as fast as society has. Now, we can get food within ten minutes if we drive or own a microwave. So presuming our body believes that stress is caused by a “famine on the way,” then it’s going to trigger feelings to make you go hunt! Our bodies just don’t know how easy it is to get food just yet. It hasn’t caught up.

Excerpted from Telling A Tale of Stress and Emotional Eating | A Black Girl’s Guide To Weight Loss

Cllick the links below to read more –

 5 Steps to Take Control of Food Addiction | MyFitnessPal

What exactly is emotional eating

Drying WASHING indoors could ‘harm your health’ | Daily Mail Online

Aspergillosis

s-l300 (1)

For anyone with asthma, COPD or a weakened immune system this is worth reading its a great piece which also has a video on it too. Experts have found that clothes put on drying frames or draped over warm radiators raise moisture levels in our homes by up to 30 per cent, creating ideal breeding conditions for mould spores – and one in particular called aspergillus fumigatus, which can cause potentially fatal lung infections.

Drying Washing Indoors is Bad for Asthma and COPD – Great video on the page too.

Drying WASHING indoors could ‘harm your health’ | Daily Mail Online

 

Falling off the precipice – and my appointment at the Royal Brompton

Falling off the Precipice

download (1)

Anyone with stage 4 COPD will remember the time that they seemed to be  walking around alright, just slightly out of breath on exertion, being able to shop, clean up, taking a shower or bath was a piece of cake and although just a bit more tired than you used to be things weren’t too bad. An exacerbation at this time only involved a few days on antibiotics and no visit to the A&E. Then, suddenly this terrible thing happened and you could no longer walk about as freely as you did or for a matter of fact do anything you were once able to do. It feels like at this time the disease has come around given you a good slap in the face shouting ‘I’m here, this is it now you can’t ignore me any more and I am not going away’! At this point in the disease patients leave work, stop doing many of the things that they used to do and physically start to give in to the disease. Dr Kemp explained this to me last week nicely he said, ‘you keep compensating, compensating, compensating and compensating until the point comes that you can no longer compensate any further’,  I think of this as falling off the precipice.

e4b965254f7604c12177e5424898df7a

At this point because you have stopped working, socialising, popping to your local shop and doing all the things you liked and enjoyed doing before you become so unconditioned this cycle continues until you are barely doing anything. It can become so bad that some people actually need oxygen to breathe on exercise. This new breathlessness can become very debilitating and you can also gain a lot of weight too; perhaps you have given up smoking and with the constant courses of steroids the weight has got out of control which also complicates the situation further. It can feel as if every day you have your back against the wall and it can and does in many cases lead to depression. You can feel so alone because no one really understands what you are going through. Your family may say, come on go on a diet and lose weight and get to the gym. Not very helpful!  So, the first thing on your list to claw back some of your fitness would be obviously to lose weight. I have mentioned this many times in a variety of my posts and you can find plenty of them in the archives I will put a link to a few at the end of this post. I know it is easier said than done because I am in that predicament right now!

SO WHAT CAN YOU DO ABOUT IT?

images (1)

Starting to lose weight and get into some kind of exercise routine is very hard when you find breathing difficult. I often think how come I managed to stop smoking, whichsnails required loads of will power but this weight loss thing seems to be slipping out of my grasp all the time?  Before I can take up a really good exercise program, I would like to get off  at least half of my excess weight. But, you still need to incorporate some safe exercise whilst you are losing this weight and I have contacted my local pulmonary rehab nurses and will be starting with them as soon as possible. I know it is going to be a slow process climbing back up this precipice and I will need all the help that I can get. I am aware also though that it will be absolutely worth it!

 

My Appointment at the Royal Brompton

13312900_10156821659325018_5819768841227949631_n (1)

It was a long journey, and the traffic was unbelievable but we arrived at the Royal Brompton at time after an overnight stay in a Travelodge which was very pleasant. Parking is terrible in London, my daughter managed to find a disabled spot and then catch me up. I had a CT scan and loads of breathing tests, one of the tests was done in an airtight cube which was very claustrophobic for me. I am still unsure what that test proved I am still researching it. It took two hours to do all the tests and I am hoping to get a copy of all of them so I can have them assessed at my own leisure. The outcome was that I am not suitable for valves in the part of my lung which is the worst! How did I feel about it I was shell shocked for 2 days but am coming around now. It is all due to collateral ventilation, I have previously written a piece about this and have included the link. I didnt think that I would have it but unfortunately I have so that is something I have to accept. They can however operate if I get all this weight off and do my pulmonary rehab course. I have to get fitter. They can then cut off the top of the offending lung and that should help, there was some talk of perhaps having a valve or two at the bottom of my lungs but the main issue was my being fit enough for an operation. So, I have to get this weight off and step up the exercise or I am not going to be able to benefit from any kind of intervention to improve my life.

MY DIET NIGHTMARE – But I’m doing it, well sort of!!

The 10-Step Programe – does it work?

NOT AGAIN – When Your Having A Bad Day – a bad air day?

pooh-having-a-bad-day

I decided to write this post after I started experiencing a worsening of my symptoms for no apparent reason on Friday night; driving my car to the chip shop. I knew instinctively that a bad day was on the way! Anyone who has stage three or four COPD will be familiar with these days. You feel like there is just not enough air to go round and everything takes so much more effort and it’s exhausting.

Like many people, when I was first diagnosed with COPD it was already quite severe and these days were very frequent and puzzling to me. Back then I used to get many more bad days than good days. Since I have adjusted my life a bit I do not have so many but when I do it always annoys and frustrates me. I run through all the reasons in my head why this day has come on me, such as, am Idownload (1) starting with a virus, have I eaten, drank something too sugary, is the air pressure low, that can cause poor oxygen in the atmosphere or have I been in contact with any allergens, maybe I have done too much. The answer isn’t always obvious sometimes there is no reason and any plans I have made for a shopping trip, visiting friends etc has to be put on hold. More frustrating, is my immediate family don’t seem to understand this anomaly at all. I’m sure they think I am malingering at times – you know, as if I really enjoy those days not being able to breath? They make comments like you are always breathless what’s the difference or your always ill as if it’s just another day! Then I try to explain yes, but its the degree of breathlessness! It is almost impossible to explain it.

So what do I do about it? Well, I find a lot of patience comes in handy especially if this daydownload (2) or days, I forgot to mention it can last for a couple of days, falls on a cleaning day or a shopping day or a day I had plans or especially if someone else is relying on me, (that can be tricky). Firstly, I hunt out my emergency antibiotics and steroids and try to decide if they will be needed. I take my peak flow and measure my oxygen levels, am I wheezing more? This usually tells me if steroids are needed and if I start coughing up gunk then there may be an infection on the way so I add on the antibiotics. If it is an infection, then it will turn into as full blown exacerbation and won’t be gone in a day or two. But if as often is the case it’s nothing like that then I will get my nebuliser out and  make myself comfortable on the settee and put 110_E2BFposter_zcatch up TV on and have a nice cup of tea (thats if I am well enough to make one). This is where exercising has really come to benefit me. These mini flare ups are not as bad when they come and I am able to get my food and drinks. Whereas in the past pre exercise me, well, I went for hours without even having a cup of tea and these mini flare ups could go on for longer and the chance of them developing into an infection were higher. Keeping fit and eating nutritious food is really important to keep in control of your symptoms. Below is a video where a respiratory nurse explains about keeping a journal helps.