Four and a half years on and still feeling tired continued

Well dear friends, I have a serious confession to make which is an indictment to how Chronic Fatigue can affect someone. It affected my concentration so much that I made the simple mistake of thinking that I had only been transplanted three and a half years instead of four and a half years.

 Please add another year to my blog titles to read Four and a Half Years and Still Feeling Tired. This is because my transplant took place in May 2009 so my good friend Sydney will be 5 this year.

Well dear blog followers having given time for the Cosmofer infusion to kick in and continuing to inject 20 micrograms of EPO per week I found that not only did I still feel tired but my sleep patterns have been totally disrupted to the point where I would find myself so fatigued I have been sleeping right through my morning meds regime thereby upsetting the general cycle of taking my immunosuppressants and EPO injections.

 To make matters worse I have found myself to become so tired I’ve been struggling to keep my eyes open when out driving. Whether at a noisy gathering or visiting friends all I want to do is sleep. I have little or no interest in doing anything not being bothered whether I do or don’t eat and my weight whilst fluctuating and despite dieting with the help of the team at Salford I can weigh at least 99kg or as much as 104kg. I have been down as low as 92kg but that was 2 years ago.

 Armed with this information I attended a nurse led clinic on Thursday 2nd January having managed to have a friend give me a lift to the hospital as I didn’t feel comfortable driving in case I happened to nod off at the wheel.

I saw Georgina in clinic and explained everything that’s been going on. Totally amazed by my story she immediately got me in to see a new nephrologist to the department called Dr. Hamilton. He took on board my whole story and suggested that I be referred to a Dr. Turkington who specialises in sleep studies. I have seen a consultant in sleep studies before who carried out a test for sleep apnoea. The results at that time indicated that I did not have apnoea but was a habitual snorer.

 So, getting back to the tale, Dr. Hamilton told me not to drive until the results of a series of tests he was ordering had come back. In the meantime I had an appointment to see an audiologist on Friday 3rd January at 3:30pm. Fortunately for me my son had a day off work and he offered to take me to the hospital. Just as I was about to leave I received a phone call from the renal team asking me to attend the renal clinic for 9am Monday morning for a special test that needed to be carried out as a matter of urgency. Duh, I can’t drive. However my friend stepped in and very kindly took me to clinic for get this ‘ a synacthen test’ (Pronounced: Sin-ass-then). In my case it was called a short synacthen test.

 What on earth is that I hear you cry? The test is very simple and is designed to check the functionality of your adrenal glands. The adrenal glands are very cleverly positioned just above each kidney and are responsible for the production of the hormone cortisol, in essence it’s the bodies steroid factory. Synacthen is another name for tetracosactide, the chemical used in the test.

 Initially a blood sample is drawn and is immediately followed by an injection of tetracosactide into the upper arm muscle. I waited patiently for half an hour after which another blood sample is taken. Job done.

 So what’s it all about? Well the tetracosactide is injected in order to stimulate the adrenal glands to make them generate the cortisol hormone, hence the reason for taking the two blood samples to make a comparison. However the hormone must reach a minimum level in the bloodstream in the half hour period to prove that the adrenal glands are ok. Well of course it’s the waiting game of days till you find out how the test went.

 The good news is I passed. The bad news is they discovered that I have unusual LH/FSH levels which need additional investigation. Yes I’m afraid it’s a set of new acronyms to work on and the plot thickens. I now have to be sent on to see an Endocrinologist.

 I was referred to Dr. Mukherjee at the Endocrinology department in the Ladywell Building who on entering her consultation room, explained that she could not understand why I had been referred as there were no results showing for the short synacthen test which she was most annoyed about.

 To press on she explained that what I was displaying was a very low testosterone level which in itself can cause multiple and very serious health problems. Anyway to cut a very long story short she suggested that I start off with a topical steroid treatment followed by regular quarterly injections in the posterior to keep me topped up. Meanwhile I have to wait until 20th March 2014 for my follow up appointment while the search for the missing short synacthen test results to miraculously appear. If they don’t appear before the 20th March then I will probably have to have another one so that the correct prescription for my condition can be implemented.

 Meanwhile I have been to see Dr. Turkington’s Sleep Team who want to carry out an overnight sleep apnoea test which means I have to make two consecutive trips to Salford. Once to collect and fit the monitor, then back the following day to return it. It will be interesting to see how good the timing is by the patient transport service as I am still uninsured to drive until a doctor gives the go ahead.

 To be continued.

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