My Story
Jun 21, 2014 21:30:04 GMT
Post by irishgirl on Jun 21, 2014 21:30:04 GMT
I was born in the Republic of Ireland in 1980 and moved to England due to my dad's job in 1982. I was always ill - my mum told me I was a sickly baby. I was constantly seeing the doctor's for earache, chest, throat infections and glandular fever. In 1996, I got Chicken Pox while on holiday in Ireland. It was absolutely horrible. In 1999, I got bronchitis while on holiday and then started getting pneumonia. I was constantly on antibiotics. In 2000, I stated getting sinus infections which antibiotics cleared but I would also have my sinus washed out every year till 2006 when I wasn't seeing more than a months improvement whereas the previous times I would have less sinus infections. My GP then started me on Cipro which seemed to do the trick but then I started getting really severe Achilles Tendon pain even trying a liquid dose to see if I could tolerate it but I couldn't so we changed antibiotics but nothing seemed to work and at the time nobody thought about doing a swab and by then green discharge was coming out of my nose. In 2006, My GP wondered if there was something wrong with my immune system so referred me to Hospital and the consultant there said there is nothing wrong with your immune system and it is just bad luck. I decided to write to a consultant down at The Royal Free Hospital but saw him privately and because of that he couldn't do a lot of tests so nothing then happened. By 2008, my sinuses were really bad as well as having other respiratory infections and a swab was taken which showed I had Pseudomonas and was in hospital for 10 days having IV antibiotics. A week after being discharged my symptoms came back so I went back to hospital (Under a different consultant) to have 3 weeks of IV antibiotics through a Picc Line. While in hospital, I developed another bug in my nose called Stenotrophomonas Maltophilia so had to go on Septrin for that. Also in 2008, my haematologist at the time (have iron deficient anaemia - need infusions) decided to refer me back down to the Royal Free Hospital, London on the NHS so I went down and they found that my antibodies to pneumonia were very low and so referred me back up to Manchester but said I could still see them every 6 months. Saw the immunologist (different hospital than 2006) and he did tests, vaccinated me. I also got checked out for CF as have two 2nd cousins (same family) with but that came back negative and in the end got discharged. In 2009, while I was having tests done, I noticed I had been tested for Mannose Binding Lectin Deficiency but the doctor who organised had not bothered to tell me so I mentioned it to my local consultant and to the Royal Free who both tested me and it showed I had. In that year, I started getting night sweats. In 2010, I had a number of UTI infections and also when I drank alcohol my neck and groin lymph nodes would hurt. Saw an endocrinologist who couldn't find anything wrong. In August, I went into hospital for my 3 antibiotics for my sinus and a couple of days before I thought I was going to get discharged (felt great in morning) I then got Septicaemia that afternoon and spent an extra 2 weeks in hospital. My consultant was liaising with my ENT consultant as he needed to operate as soon as I was infectious free due to a cyst and loads of mucus in my sinus. After the 5 weeks in Hospital I transferred to the private hospital (have health insurance) to have my operation and got Septicaemia again and was moved into Intensive Care the following day. They put a central line in to give me everything and I got told my kidneys were starting to fail and that if I didn't improve by the next day, they would have to ventilate me. Thanks goodness I started to pull through. After I got discharged I then started becoming breathless and had severe itching starting on the legs and then the rest of my body. It is still happening today and no-one seems to know why. I have been checked out many times for lymphoma and autoimmunity as Prednisolone gets rid of all my symptoms. In 2011, I then had to have 6 months treatment of TB as had tested positive for the blood test in 2009 but because I had night sweats and breathlessness, my consultant wanted me to have the treatment. It was not a walk in the park but my consultant was brilliant. I subsequently found out that I got the BCG vaccine 7 days after I was born. Then I still had immunity at Grammar School but then in 2001 when I was doing volunteering work at The Christie Hospital, I got tested again and had lost my immunity so need the vaccine again. All this time have been going down to London every 6 months and having my usual blood tests. At the end of 2011, I went to see a consultant in Leicester to see if I had a genetic condition called Primary Cilliary Dyskinesia (PCD) and I had a nose biopsy but luckily I don't have PCD. Since 23rd October I have been off sick (other than 3 weeks in March 2012 when I went back to work) as have had to have Gynae operations due to Endometriosis and then poor wound healing which only finally healed in November 2012 but now I need another hip operation which is happening at the end of March and am having an iron infusion at the same time. Was in London in February to see the head of the department who noticed I had a Biofilm infection in my nose so is asking my local consultant to do a spect-ct scan of my sinuses to see if I also have it in my sinuses. He also took 7 bottles of blood - some of the tests he is checking haven't been tested before. We have had to change my prophylactic antibiotic as Doxycycline was making me throw up but I have allergies and sensitivities to a lot of antibiotics so he ended up putting me on Augmentin 625mg (3* a day). He also put me on Fluconazole 50mg due to that I always get yeast infections when on antibiotics, Prednisolone 10mg and Aciclovir 400mg (2* a day). I am also on Duloxetine, Noriday, Metformin, Lansoprazole, Levothryoxine, Rupatidine, Bricanyl and symbicort.
As of now, I am waiting for the clinic letter to come to me from my Immunologist. Also my Occupational Health have told work that my PID is a Disability under the Equality Act and that I need to be redeployed in either Head Office or somewhere else (Pharmacy, Banking, Funeral) that have less customers than working in the Retail (store) environment. Work are been annoying to an extent at the moment and are looking at Ill Health Retirement for me at the age of 33. They are also referring me again for the 3rd time to our Occupational Health for them to say the same thing. Also either our Occupational Health or my Employers have lost my GP report from November last year and I have checked it out at my surgery and it was sent.
I also have lots of other medical conditions which include:- Ehlers Danlos Syndrome, Asthma, Hayfever, Small Nerve Fibre Neuropathy, Bile Salt Malabsorption, Underactive Thyroid, Mild Scoliosis, Subtle Murmur, Fibromyalgia, Mild Leaking Mitral Valve, Endometriosis, Hiatus Hernia and Transverse Stomach, Had Previous Vitamin D Deficiency, Had Glucose Intolerance - but not sure if still am, Madelung's Deformity - both arms, Patent Foramen Ovale, Osteopenia, severe Sinusitis.
Added edition - I now see my an Immunologist at The Heartlands Hospital, Birmingham and am also under a consultant who looks after all my care. I have now been back at work for nearly a year though have had time off due to infections, asthma and a hysterectomy. Manager has been great to some extent but they are not happy with the amount of time I have had off
Emma