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I'm not sure that, what I want to write, is all relevant but I'd like to get it off my chest now. I usually write things down and find it therapeutic but maybe going public with it all may find someone who gets where I'm coming from too! It's not all OSA related as that is only the latest thing to happen to me provoking thoughts of the analogy about the straw and the camels back!
I am 41 with 3 children aged 9 - 17 and I've been on quite a rollercoaster over the last 5 years but I've taken it in my stride most of the time with the odd blip of self pity, a few temper tantrums and lots of tears.
In 2007 I split up with my hubby. At about the same time my uncle's condition was deteriorating; he had cancer and rapidly losing his battle. Specialists couldn't work it out as his cancer had all of the symptoms and pattern of a condition called FAP which is genetically transferred through families. First puzzle was that FAP usually becomes problematic in teenagers as studies have shown that the hormone and chemical changes of puberty arouse the FAP gene but my uncle was 64. Secondly, there was nobody else in the family diagnosed with it. To cut this part of my story short, he very sadly lost his fight in February 2007, the day after it was confirmed that it was indeed FAP. Mass testing ensued and thankfully all of his children had not inherited the gene so their grief was not compounded by additonal worry. It only takes one parent to pass on FAP unlike a lot of other genetic conditions that require 2 carriers to create a sufferer and it doesn't skip a generation to come back so their line is clear. My Mum and her other brother tested positive and then me, my sister and my cousin all tested positive too, followed by trips to the endoscopy unit only to find that we all had the polyps, thankfully benign at the moment and all needed surgery. Post colonectomy, my Mum was found to have cancerous polyps in her duodenum which was removed along with her gaul bladder, half her pancreas and a third of her stomach. She's nearly 4 years post op now and doing well though her life is beyond recognition. My cousin had a stroke in recovery, only 34 years old and believed to have been fit and well aside of the FAP so that was a huge shock to all concerned, but he's made a reasonably good recovery but again, his life is beyond recognition too. My sister and uncle did OK but it's been a long road for them too in various ways.
Well, being overweight and being fortunate that my polyps are not life threatening yet, I chose to delay my surgery to give me time to improve my health pre op and thererfore improve my recovery statistics. I then sat of the side lines and watched these nightmares unfold and went into complete panicking melt down. I panicked for my children as to whether they had the gene, I panicked about my surgery going wrong and either not being here for them or in some way beyond being able to look after them and a lot more irrational fears kicked in. I had 2 years of counselling sessions which proved to be invaluable and gave me great coping mechanisms as well as perspective.
I got to the end of the counselling, got myself back on track and even got back together with my hubby so while 2007 was horrendous, 2010 turned out to be perfect. I was back in my little bubble happiness. I still had surgery looming but I was on track with weight loss, the polyps haven't changed/advanced and my surgeon is happy to defer surgery until 2014 subject to close monitoring and review if anything changes. Why 2014? Well, I just wanted my youngest child to be at 'big school' and all of them able to take themselves to and from school/college so as not to burden anyone while I'm recouperating and allowing hubby to work without worrying too much. I also wanted them to be more of an age that I can explain things and not have them panic as much while I'm in hospital.
Hang on, I'm getting to OSA in a minute. My FAP surgeon suggested a referral to the bariatric team for help with my weight. I was actually under the minimum BMI for their criteria but they agreed to see me in view of my FAP and that's where I did the Epworth test in March 2012. My score was 17 out of 24 and so a sleep test was booked.
I went to the cardio respiratory unit to collect a home sleep test unit which I had to wear while I was sleeping that night. It consisted of 2 belts, one around my tummy and one around my chest each holding sensors in place. I then had a nasal canular and an oxygen monitor on my finger. I felt very techno wired that night. I returned the unit for analysis the following morning and was told that the consultant would be in touch with the outcome. 3 weeks later I got a call from the consultants secretary (last Tuesday morning) asking if I could attend an appointment on Thursday. I initially said yes but the following morning realised that I had overlooked another appointment so I called the hospital to rearrange and was given 10th May; no problem I thought and I thought wrong! The consultants secretary called me within 20 minutes of rearranging my appointment and said that I MUST see the consultant on Thursday as I had an appointment to collect a CPAP machine on Friday but I couldn't do the latter without having seen the consultant first. Anyway, needless to say I went to see the consultant on Thursday at a different time and in hind sight I was shocked by the lack of information given to me. He gave me a leaflet and a letter for the clinic and told me that he would like to see me again in 4 months time. That was IT! That really was all he said. It took longer to check in for the appointment than it did to see him but I foolishly took that as a good sign and I will be addressing that when I am a little more settled!
Well, Friday morning and back to the clinic and I saw the same, nice chap that had given me the sleep test equipment. He was mortified that I was oblivious as to how severe my test had shown my OSA to be. He had apparently hand delivered my results as he was so concerned and he had coordinated it to get me the appointment that morning for a CPAP machine. I hadn't even been told about the implications of having to tell the DVLA. I went from blissful ignorance to deep shock within 20 minutes and yet again my little bubble is burst!
I have read a lot of stories, blogs and topics on here and other places about the symptoms and how debilitating OSA is to a sufferers lives. How it was so bad that they had sought help for a diagnosis for extreme tiredness. One gentleman even blogged that he had twice fallen asleep at the wheel of his car, though thankfully without serious consequence. I think that this is where my anger is, though not at anyone specifically as nobody did this to me. I DO fall asleep during the daytime if I sit down but I never feel so tired that I have to sit down in order to sleep. I DO fall asleep on car journeys when I am a passenger but I have done that all of my life, it's always been the standing joke because my parents used to put me in the car and rive around the block to get me to sleep sometimes as a baby and toddler. I have on occasion, fallen asleep at the cinema, but usually when I'm enduring a monotonous childs film (though some of them are funny!) If I go to lay down in the daytime (though not sure why I would other than illness) then yes, I would imagine I'd fall asleep but again....I have NEVER had the situation of NEEDING to have a lay down because I am so tired and need to sleep during the day. I do snore and have woken myself snoring on occasions though rarely but I've snored since I was a baby. I had my adenoids removed when I was 9 to see if that stopped it but it didn't. I'm from a long line of mouth breathing, snorers. I have a good quality of life, I'm alert, awake, usually very laid back taking life in my stride and I am active. I have NEVER fallen asleep at the wheel nor felt sleepy while driving. I have NEVER fallen asleep mid conversation other than the conversations me and my hubby have about our day when we get into bed at night and then that's the idea; we chat ourselves to sleep, or at least we did before the mask arrived! I love the support that I have been shown to date, on here and at home but it all echoes how worth it it will be to not be so tired but that's my point, I'M NOT TIRED!!!!! I didn't seek help because I didn't feel right, this has been stumbled on, thankfully I admit! I've never woken with the apnoea though that's not unusual from what I've read, it affects those around me more than me.
I have another (yes another) lifelong condition called pernicious anaemia for which the treatment is intra muscular vitamin B12 injections every 12 weeks. One of the main symptoms of that is tiredness and I can tell when my injection is due for 2 weeks before it and a few days after because I do feel a little more irritable and tired then but it is blatantly obvious that it's connected to my B12 and still doesn't make me purposely sleep during the day. I just nod off if I happen to sit down to relax (which is not often lol).
I have my hubby around this time who is brilliant, loving a very supportive. He'll also be the most grateful for a peaceful nights sleep too. The first 3 nights with the machine were terrible. My nose and throat dried out and became very sore. I managed an average of 3 hours each night and was awake for the rest of it so by Monday morning I was a zombie. I called the clinic and went back in to see them. As well as the soreness, I have been woken to my mouth being blown up full of air and I couldn't seem to breath fast enough to cope with the air being blasted at me especially when I exhaled. If this was to be my future I was devastated! BUT... they altered the EPR on the machine and gave me a humidifier. I was asked to try those 2 changes and if it's still unbearable then there was still the option of turning down the machine to 10 but as the data was recommending a pressure of 12.1 then at 10 it would allow my airways to collapse sometimes and therefore I'd still have some apnoea episodes but not as many.
Last night, with the 2 changes in place, was much improved. While my throat and nose are still sore, last night didn't add to it and they are a little better today. Resetting the EPR did the trick too as I didn't feel rushed to breath and allowed me to feel more comfortable. I think that I will always have a love/hate relationship with my CPAP machine but I am confident that it will get better and become just a routine part of my life as time goes by. I do hate that this is happening and I expect my emotions will vary for a while to come but I will persevere as I want to be as healthy as possible for my surgery. I am not pursuing bariatric surgery as I have been doing really well on my own since I first consulted with them back in February and I've enough surgery on the cards without adding more.
It has really helped me to get all of this out, so thank you for reading it this far. It has been a shock and a stressful start to treatment but reading others' blogs has helped me to realise that all of my feelings have been perfectly normal. I am still brand new to this with a long learnign curve but hopefully, if I share my experiences and feelings as I go, someone else might benefit from knowing they're quite normal too
Best wishes
Kazzie
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