![]() |
![]() |
![]()
I always dreaded going to see a doctor for the first time, as I knew they would ask for my medical history, and I never knew where to begin…
Since the age of 16 I had not felt my healthy, happy self and had to constantly go for blood tests, see dieticians and gynaecologists. By 21, I had gained a huge amount of weight, was always exhausted, wasn’t menstruating and had a new bruise every day.
I went to see my GP who immediately started me on a course of iron injections, once a week for 2 months and said I should go see a physician as my body was not absorbing the iron.
And this was the beginning of my nightmare with doctors…
I started seeing a dietician who monitored my weight once a week and I had to keep a log book, of every item I had put into my mouth. I am really not a big eater so when she weighed me, it was devastating that without fail each week, I picked up 0.5kg(1.1lbs). By the time I weighed 73kg (160.9lbs) she felt like there was nothing more she could do for me and recommended I see a specialist.
The physician I went to was highly recommended and sent me for many tests including a dexamethasone suppression test and urine collection. I do believe she may have diagnosed my Cushing’s immediately, but she was going through her own personal problems and after a month of waiting for any feedback from her, I made the decision to look for a new doctor. I tried several doctors as well as homeopaths, physiotherapists and reflexologists. My sister, who is a paediatric dietician, could sense my problems were not due to bad eating and lack of exercise and insisted I see an endocrinologist. She organised an urgent appointment for the following week. I walked into the doctor’s examination room and before he even asked for my history he asked to see the blood results I had done from the previous physician. Without even looking at me, he read page after page of results and just kept nodding his head. Finally when he got to the last page he looked at me and said “you definitely have Cushing’s”. This was the first time me or my mother had ever heard of such a disease but I wasn’t even concerned or worried about this sickness he had diagnosed, I was just so relived that someone had finally put a name to the past 3 years of suffering.
He asked me all sorts of questions regarding weight gain, my cortisol levels, hair growth, energy levels, stretch marks and then asked if he could look at the back of my neck. Until this time I had never realised I had a large lump protruding out the back of my neck... how had I missed this?!?! He called my mother in and asked if she had noticed it before. But since I have long hair and wear it down my back most days, she had not noticed it before. The doctor also asked if my personality had changed, I obviously didn’t think so, but my mother quickly answered, without hesitation “She’s very moody and has no patience”. Up until this time, I hadn’t realized that once the most even tempered and calm person, I now no longer had patience and easily lost my temper – I wish I could say this has improved... but I guess some things will never go back to the way they once were. The following day I was sent for another set of blood tests and I remember leaving the hospital and getting into my car, and the tears started streaming down my cheeks. For the next 2 weeks I hardly went into work and besides lying on my bed, I researched every website I could possibly find relating to Cushing’s and often stayed awake all night, trying to find out as much as possible about this sickness which had taken over my life.
I was pricked and prodded, sent for MRI and CT scans and felt as if I was constantly playing the waiting game. Waiting for results was nearly as bad as not knowing what was wrong with me.
My first few scans came back normal however my doctor was not convinced, since my cortisol levels were almost triple what they were supposed to be (1700mmol/l), they continued doing tests. I obviously wasn’t wishing for the doctors to find a tumour, but the thought of them not finding anything meant I would have to start all over again with being pricked and prodded. By this stage I was emotionally and physically exhausted! I went to meet the surgeon who explained how my adrenalectomy would be performed. He told me if the tumour was malignant, I would have a month to live – my body tensed up, I sat frozen, speechless, not believing what I was hearing. How could the doctor be telling me that this might be the last month of my life, I was too young to die, I had so much still to do!!!
He didn’t realize how fragile I was at this stage and that I was holding onto every word that came out his mouth… Numb from the shock of hearing the diagnosis, myself and my mother left the surgeons room. I did not say a word the entire drive home and that evening I told my family I refused to have the surgery as if I was only going to live for a month, there was no point in going through with the procedure. It took a lot of convincing from my family (who phoned the surgeon to tell him how his comment affected me) before I agreed to go through with the operation.
I had the operation on the 20 January 08 and was in ICU for 2 days as I was having trouble breathing. I later learnt that the surgeon had punctured my lung in the process of removing my adrenal gland and tumour. Before my operation, I never realized how much we used our stomach muscles, but I soon learnt! I was in bed for about 3 weeks, but the time flew as I constantly had the love and support of my family & friends. The hardest thing was the fact that I didn’t feel any immediate improvement. It is silly, but I guess I was hoping that as soon as my adrenal gland and tumour was removed I would go straight back to my old self... I was so wrong!!!
After 6 months I slowly started getting more strength, losing some of the weight I had so easily gained, I didn’t have constant aches and pains and started seeing a trainer who focused on stretching and toning. One thing I definitely learnt was to be patient, it is a long and slow process and you need people around you who are positive and supportive.
I wish I could say that I don’t often worry the Cushing’s will reoccur, but I guess once you have been faced with an illness, it is a constant worry. I am 18 months post op and am thankful for being alive, having my family and friends around me who supported me through the most difficult time in my life and that I am nearly back to my old self. Actually, I have let go of how I used to be and have finally learnt to appreciate the person I have become!
|
|
comment on this page
email this page
print friendly
