I am desperate to find out what is wrong with my husband the doctors have been unable to diagnose him for the past 12 months. I have documented the past 12 months if anyone can help we would be very grateful. He is 62 years of age, he has been a smoker but this was at least 25 yrs ago. He has also been a regular drinker.
Symtoms became more noticeable inJune’09 but was also complaining in May that he was feeling fatigued also appetite slightly affected.
From then on generally unwell, he was looking a bit grey at times. A smell of mucous on his breath.
Found walking a task, not breathless but struggling, a feeling of tightness in the sides of his throat. When walking or in bed experienced cramps in the legs.
Complaining of sinuses being blocked but could breath through nose. When bending over his face and ears would colour bright red and mauve as if his head looked like it was about to explode. Complained of pressure in his head. The doctor prescribed Nasonex , this did nothing to relieve the symptoms. He then had another slightly stronger steroid spray but again no relief. A third steroid spray was prescribed but again symptoms still remained. Our local doctor referred my husband to the Ear Nose and Throat (ENT) consultant but before this they suggested that he should attend the Rapid access chest clinic this was September ’09 he had chest x-ray apparently normal, although the sister conducting the test said that he had the odd coarse crackle and could hear what sounded like pleural rub. His chest sounded quieter at the right base than the left. No ankle swelling and no heart murmurs. No abdominal or liver tenderness. The heart appeared to be in good shape, younger than my husbands age.
• 11th September, 09 consultation ENT
• 5th October ’09 saw another consultant a CT scan was requested and a septoplasty and SMD was also suggested.
• CT scan revealed sinuses to be clear
• 6th November ’09 operation septoplasty conducted and SMD
• 18th November ’09 follow up to operation ENT
No improvement after operation. Cleansing nose with neil-med and anti-biotics.
Facial colouring still bright red and ears mauve, husky throat as if swallowed dust.
Sleep pattern becoming very erratic, feeling the need to be sitting up right to sleep because of breathing difficulties.
We now noticed legs being swollen, particularly the left leg. My husband was prescribed water tablets. One leg was more swollen than the other which we put down to a previous injury on his calf muscle (a torn ligament not treated at the time) apart from resting the leg.
He was also complaining of feeling the cold, his hands and nails were mauve and he felt the need to take a bath to get warm from the inside of his body. At this time he was still expelling large crusty pieces from his nose which we expected as the operation had been only a two or three weeks before. He still complained of a blocked right ear and under his right eye.
All this time he was feeling unwell and was also physically sick bringing up bile, only on one occasion, no blood. We saw another ENT consultant because we were away at this time and he had said the operation looked as if it had been successful but he did remark on his colouring and said he looked grey and the mucous smell was coming from his stomach.
Still no appetite, drinking fizzy drinks (Soda water) to help with a feeling of refreshment. Coffee and tea distasteful.
We saw our local G.P and she requested a chest x-ray that was 7th January 2010. After viewing the x-ray the technician said that my husband should go to his doctor immediately. He in fact asked if my husband had had part of his lung removed! Obviously he hadn’t. The doctor requested an urgent appointment with the general medicine department of our local hospital.
18th January 2010 the doctor requested the same day a CT scan and medical including blood tests. Thyroid was slightly on the over active side, earlier on in the year it was under active. The scan revealed the right lining of the lung to have fluid also some soft tissue on the edge of the wall of right lung away from other major organs.
19th January 2010, as an outpatient my husband was treated and some of the fluid was removed (1.7 litres) from his lung and the fluid was tested but found to be inconclusive. Also he was given anti-coagulent injections for a further three or four days to treat the swelling in the left leg. A scan on the leg was clear of thrombosis.
4th February 2010, an appointment was held with the consultant at Harefield Hospital.
Chest x-rays and blood tests were taken at this time.
11th February2010, he was admitted to Harefield for a pleural effusion and bronchoscopy, talc pleurodesis and biopsy. His liver was mentioned as being slightly enlarged and I had noticed that the whites of his eyes were yellow and also sometimes his facial colouring looked yellowish.
22nd February 2010, a follow up appointment to the operation revealed no cancerous cells, although they did not actually penetrate the lung, they felt they had enough of a sample from the lining to be confident that it was not cancer. In all this time my husband has lost weight but only a stone, naturally he has lost muscle tone, due to inactivity.
19th March 2010, follow up appointment with ENT our local doctor suggested an MRI scan of the head, because of blocked sensation in the ear and a ringing in the ear.
22nd March 2010, MRI scan for head result normal no tumours.
24th March 2010, as a day patient for US Abdomen – we still do not have the results of this test.
29th March 2010, an appointment with the general medicine department. Chest x-ray and blood test, bilirubin levels consistently high over a couple of blood tests.
30th March 2010, another appointment with the general medicine department, admitted for further tests as an inpatient, C.T scan showing lung has improved, soft tissue reducing and 2 lesions now smaller, still complaining of breathlessness. Blood taken again we think for liver screening, awaiting further tests. HIV test also conducted result clear.
21st April 2010, The doctor went over the C.T scan and suggested it might be calcification of the pericardium although we could see a white line on the scan, an echogram was requested this was normal.
30th April 2010, consultation with ENT, infection found in nose as large hard pieces of mucous still coming from the nose, anti-biotics prescribed Sterimar still pressure in head and blocked right ear. The consultant has suggested if there is no improvement then maybe the sinuses will have to be looked at. To date there has been no operation actually on the sinuses just a correction of the nose.
18th May 2010, consultation with liver consultant.
Other points to note my husband has been on medication for indigestion; Omeprazole. He has suffered with this for a number of years it is appears to be in his family, both his sister and father had the same problem.
As you can imagine this has now been an issue for almost a year now and we are no closer to identifying the problem. My husband is clearly depressed and effectively housebound. Walking outside causes distress particularly when the temperature changes this appears to encourage a coughing fit he complains of breathlessness which is distressing for him. Also walking upstairs and generally talking also causes him to feel breathless.
If anyone has any idea what might be the problem we would very much like to hear from you. We are at the end of our tethers!
Thanks in advance.