When I reached the QE yesterday after a horrible journey through 6 large roadworks, Selly Oak one large building site my anxiety levels were sky high. I always ask to be put on my consultant’s pile because registrars have no idea about me and are always shocked when they compare the person who walks into the room with the data on their computer.
Nobody told me that the consultant is on holiday. I discovered this after sitting for an hour chatting to long time patients from our days back at the General Hospital in the 1980s and also the chief lab tecnitian who had arrived there whilst doing her PhD in 1982 and is still chasing the bugs.
I was really fed up when I realised that I would see the registrar but thought it rude to leave. The nurse scurried in before me to explain why I would probably be difficult.
Well, he looked at me, he listened to my chest. He said my sputum didn’t look good and I told him that was very good for me and that I am cautiously giving the ceftazidime a neb again and that so far no adverse reaction. I tell him that I am not so worried about my chest or heart but that I am fed up with my GPs who refuse to take seriously the fact that blood tests indicating platelet problems and anaemia keep coming back abnormal and I am constantly exhausted
Then he looks at my last scan from 2015 after I had the empyema. He rubs his face with his hands. He asks have I been tested for cf - yes several times. Then he launches into an explanation of the scan and what inflamation does to the body - yes sir I could have told you that.
Then he tells me that my scan is worse than many cf patients. Yes I could have told him that.
Did you come here by yourself?
How far can you walk?
Do you manage to cook for yourself
The registrar confusion has taken over
Anyway, in an attempt to find something that his boss or the GPs have missed he orders 5 different sputum tests in 5 diff pots ( he offered the physio to help me fill them, I told him that a visit to the loo will suffice) and a total if 23 blood investigations and I had to trot around for an xray.
Sadly for him he won’t find anything new with the bronch but maybe the blood tests will begin to show what is giving me the classic symptoms of anaemia or vit B12 deficiency.
These experiences depress me beyond measure because I have spent every day of my life striving to be ‘normal’ and when I am looked at almost as though that attitude makes me a fraud because I am, in fact, a sick invalid, it makes it even more difficult.
My consultant has known me 20 years, she knows the vicissitudes of bronch in our every day existence and is guided by me as to how I feel, not how a scan says I should feel.
Then I just had to negotiate a person who had dropped dead in the doorway of the hospital, the roadworks in rush hour, a young lady who came dashing down the outside of a line of cars and would have crashed into me if I didn’t have good breaks and amazing reactions and pouring rain.
How happy I was to reach my dear little bungalow and Twinkle demanding his tea.
So hopefully doctors finished with for me until I tackle the GP about the results of the blood tests and it is just supporting my two closest friends who are suddenly both undergoing tests for life threatening conditions.
Onwards and upwards. Thankyou for plodding through this.
Could you perhaps ask to see a consultant haemotologist, he's an expert in blood condiconditions? Especially as your GP is not helpful. All good wishes to you.
Thanks for that. That is my next step if this comes to nothing. My GPs are so useless that I will have to pay privately for a haemotologist as they refuse to believe that I need one. It may be that my chest consultant will refer me on the NHS.
That’s what I would like to find out. My GPs keep doing the wrong blood tests and ignoring the results of others. I had relatives with it and I have all of the symptoms so it is a pissibility. Thank you for your reply
Hi, what a horrific journey and disappointment you've endured! I can totally sympathise & commiserate.
My ex consultant was absolutely vile & horrible, after 2 sessions I refused to see him and saw registrar instead. I'll always remember her name, she was utterly brilliant, thorough & helped me so much. On making next appointments I'd always check that it wasn't to be with 'him' only to find sometimes I'd get there (after double checking by phone that I was seeing registrar) & find there was only him. Once it was after a 200 mile round trip, I'd be furious on my wasted efforts, stress & so frustrated.
I feel my blood pressure rise just thinking about it.
All the best with the bloods results Littlepom, sincerely hope you get some answers. P xx
It just leaves you feeling 'less than' when you strive all of your life to be 'equal to' doesn't it. Also when they let you sit there and don't tell you that the person they have promised you can see isn't there proves that they just see you as a number on a list. I do hope that my con isn't gearing up to leave. She has shuffled another long term patient off to a consultant at another hospital and would have no confidence in the guy I saw yesterday.
Well i was totally confused at first when you mentioned the QE and thought for one moment your were still in the America's and were about to sail home and that the debris was after the vessel had hit an iceberg,so you are obviously home.
You have such a unique relationship with your consultant who is so understanding of your condition that maybe you are a little harsh on her registrar who like the rest of the 2nd eleven haven't got a clue what's going on though at least he did make efforts to understand and those blood test will be invaluable should you decided to go privately and probably save a little money at the same time.
As winter draws in LP and given the state of the nation at the moment i would concur with you that a private consultation to try and sort out this persistent Anemia is probably the quickest and best route and i hope you have the finances to stretch to that.
HI Ski’s and scruffy. Thank you for your reply. The ‘second eleven’ a lovely description, have to gain their experience and it is probably impatient of me to not want to be the source of this. Mostly because they try to tell me about my condition and I know better than they do what they are looking at on the screen because I was the one there five years ago when it was done.
What I will say about this chap is that he is doing his very best, which is more than I can say of my GPs who carried out the blood tests ordered by my heart consultant but then cannot be bothered to look at the results properly,act on the ones which came back abnormal or even take on board my multiple symptoms including steady weight loss. After all, it is not the chest consultant’s job to be looking for blood abnormalities. I do know from conversations with them that they are increasingly having problems with GPs. Anyway, I wait to see if anything shows up from this lot.
OH LP, What a Horrible experience. My days of getting to QE for an early Appointment, are over with. Wishing you the results you want Hun. Take care. Love n Hugs C. XXX
Thanks for your reply and the hugs which are enthusiastically returned. As you know, the roads around the QE are awful without multiple road works and pouring rain. I always have to drive myself in from Warwick and my anxiety levels are always through the roof. If these results are questionable I will find myself paying for a haemotologist I expect.
Hi Hun, My very First Drive to QE, was Horrendous, always Road Works and Traffic trying to Bump you off. Ever since, every 3 Months for Tracking Appointments,( which I do not Have anymore) I would Use "Arriva" Ambulance, Free NHS Service, peace of mind not Having to Drive. I do Hope you get the Good results you Deserve. Have a Good Weekend LP. Love n Hugs C. XXX
What a difficult day for you - hope you are taking it easy today and until you feel able to get going again. I always look well, have a naturally high colour in my face. My all time great was my mother coming to see me in hospital, thinking I was asleep and about to leave when the sister stopped her and said she should stay as they were not sure I would make through the night! It is a common experience for people to say how well I look when I am feeling rubbish.
It is annoyng when you are judged by your looks. Last time I . Saw my doctor he said you are looking very chipper! i told him my mum often said "my looks don't pity me' . Now its my turn t say that!
We bronchs do tend to look very well most of the time. It can lead to some interesting situations such as the know it all woman at our book club who berated me in front of everyone for parking in the disabled space outside. As everyone was transfixed on me, my friend, the coordinator said very calmly, she has a Blue Badge. Much stuttering then the wonderful statement ‘ well SHE doesn’t look like one of those disabled’. She stopped coming to book club!
What a rotten time, especially after your lovely holiday in USA. This happened to me once when I had to take my then 5 year old son to an orthopaedic clinic for his club feet. His appointment was 2 o’clock, an emergency happened, so the clinic was delayed by four hours. We finally saw a junior junior doctor who hadn’t a clue! We had to come back another time. Fortunately my son was well behaved but keeping him occupied in a clinic with no child friendly support was pretty exhausting. I wish they would think. When I was expecting this son I always saw the consultant, but one day they had to distribute most of his patients around the juniors. As it happened I knew the sister from elsewhere and she grabbed my file before it could go with someone who knew nothing! I am sure your diagnosis, like mine, comes under the official heading of ‘complicated ‘. I hope they get you sorted out, and I cannot understand why your GP won’t arrange blood tests for you. I have been so lucky with my GP who when I asked him if I could have heart failure immediately arranged blood tests and after getting the results an urgent appointment with my cardiologist. Seems I might have been right! Hope your next appointment is more satisfactory and you don’t lose your consultant xx
Thanks Carnival. We all have our trials don't we. It's kack of communication mostly. My bestie has been having investigations because she suddenly got fluid on the lung. She is going for the resukts tomorrow but got a txt today saying that she is due a scan in gynae! No explanation or anything. We are waiting with bated breath to find out. I hope that everything is going along well with you now.
Lack of communication seems to be at the back of most of these failures doesn’t it? I wasn’t a bit surprised about the recent reports concerning it. Keep smiling if through gritted teeth! xx
My goodness, what a horrible day. You probably need a month to recover from the journey alone. Good luck with the test results, hope something gets sorted out for you.
Isn't it great to come home after a long frustrating day at the hospital! Interestingly I was diagnosed in April with b12 deficiency after going to my Gp with terrible fatigue which I had blamed for ages on long term antibiotic use. When I asked what the cause might be I got a shrug of the shoulders and b12 injections. I was also diagnosed with a zinc deficiency for which I take supplements. I have an underactive thyroid as well as bronchiectasis. So I wonder if there's a connection there. I hope you get some answers. And thank you for sharing your trials and tribulations. I enjoy reading your posts and find them really helpful. Susan
Thanks. It is so frustrating that my GPs don’t believe me that I am deficient in something. Vit B12, magnesium, who knows. It took me two years to get them to test me for vit D. When they finally did it was practically non existent. I was put ona high dose programme for 5 weeks and now take 1600 iu per day and my levels are lovely. I have only had 2 colds in the last three years.
Sounds like an exhausting and frustrating day for you.Hope it all gets sorted.It's so refreshing to hear your rant,We are all only human and sharing is great. as a reassurance that I'm not the only one who has a patience 'vacation' once in a while !! best wishes xx
Hello Littelpom, I just wanted to wish you well and hope you get to the bottom of what you are going through. My very best wishes to you take care. 🌺xx
Sorry to be late replying to your post Littlepom, dont know how I miss some of them. I try to follow your posts as I learn alot from them and make sure that i can now be firm with asking for a referral. Its a good job you know alot about your condition so can make sure that these doctors are doing the right thing by you, although it is usually the gp them lets the side down. Hope you enjoyed your holiday and feel well rested, although I think you need a holiday when you get back to get over it ha! Hope you get to the bottom of your problems soon x
Thanks Izb1. The holiday was great but it was an adventure rather than a rest. So now it's back to the GP problem. Given how many people have problems with them I wonder where we are going with first line care. Twinkle says have a lovely weekend.
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Bronchiectasis and weight loss
I’m so confused! What do my results mean. 
Made it home ok thanks all. Another day another saga. 
Post-Covid lung issues - what to expect?
