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?
My Treatment Regime Was Changed!
Usually, when I have a flare up I go into hospital and my consultant prescribes IV antibiotics 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 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 they 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 that 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.
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 Consultants 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?