Thursday, 4 August 2011

Details about the clotting

I will try to explain the last brief post I made, bear with me though as tramadol and morphine pain relief is currently making it quite hard for me to make sense of anything much.

Last week I felt run down, not just tired but really run down. Some days I did very little and had a pain in my left knee that was quite sharp when I walked any distance (50m or more). I had a bit of a sore throat so put this all down to a teachers cold. What all of you non-teachers do not realise when you comment on our long holidays is that a lot of us end up quite ill for the first few days of each break. These symptoms kept coming and going, one day I felt ok-ish then next quite tired and a bit ill.

On Sunday Kat needed picking up from Bournemouth so I travelled over, it was hot so I had the windows open and I noticed my chest felt a bit sore inside my right rib cage. I just assumed this was perhaps the cold taking hold as I felt quite achey everywhere as well. It got worse as the evening wore on. I thought perhaps the open windows in the van had given me a chill or something.

Monday morning I woke in a lot of pain, I was struggling to breathe naturally and fully, gasping occasionally. Kat talked me into calling the doctor, who instantly called an ambulance. The paramedic lady was not a full paramedic and only arrived with the support car as opposed to a full van. She did various tests, noting my pulse was only 54 (which is quite high for me), she stated her concern that it was so low until I said that I do a fair bit of sport. The full ambulance crew arrived and took me to hospital. I still thought at this point that it was just Pleurisy (swelling on my lung) caused by a cold or flu.

They did a lot of blood tests, all came back perfect apart from one (D-dimer, a broad test that indicates a problem but is not conclusive on its own). With my symptoms and another test showing a distict lack of oxygen in my blood they got more concerned and told me I would be staying overnight (at least 1 night) to be closely monitored. They said there was a possibility that I was suffering a Pulmonary Embolism, which is a blood clot in the lung, this in turn causes the Pleuritic swelling around the lung and the acute pain. I was moved from accident and emergency to their Emergency Medical Unit (EMU without Rod Hull). After 2 hours Kat went home with all my money and valuables, leaving me with shorts, a tshirt and a wash bag. Twenty minutes later the specialist turned up and told me to come back in the morning for an Angiogram! This was about 8pm, I had shorts and a tshirt, toothpaste and soap, none of which would keep me  warm on the way home. I had been told that I would be staying overnight but it was clear there were no beds and the tourists couldnt go home so they sent the local home. My view of the NHS at this point went from respecting all the workers to complete disbelief in the decision they had made to send me home. The last thing I want to do is stay in hospital, but please understand that I could not breathe well and was in a lot of pain.

Luckily a kind nurse gave me a lift home at the end of her shift. The NHS now seems to be like the Education system, full of people who care a lot, but are forced to follow beaurocratic decisions and hit targets set by idiots who do not care.

Monday night and tuesday morning I was in a lot of pain. I could not find any position to get comfy. I got the phone call to return to the hospital for midday for my CTPA (computer tomograph pulminory angiogram) which I gather is like a 3D xray. I went for this which took the 15minutes I was told it would take and was actually out of the department before midday. I went back up to EMU (still no sign of Rod Hull), and waited for the results and the consultation. I was in a lot of pain.

By 1pm I asked for some pain relief and somewhere to lie down as I was struggling to breathe. I was told there were no free beds, so I pointed out the empty room full of them. I was still told no and to go and sit and wait. By 2pm I was wet with sweat, shaking a fair bit and still in pain. I asked again for some pain killers. By 3pm I was getting a little impatient and annoyed, I asked again for some pain relief. At 4pm the results came down so at least I was distracted from the pain for a brief period. The consultant moved me to a room full of beds, only one was occupied. I sat down and he told me that there were multiple clots in both of my lungs. One infarction was showing which means that the right lung is damaged.

I asked him why my homocystine levels had not been tested after I had a heart attack, he said I should have been and he himself could not believe that they had not. I explained that all the 'consultants' had done following my heart attack was prescribe me the standard drugs and blame it on my family history. As I have explained in previous posts my Father died at a young age, but we are opposites, he had a crap diet, was over 20stone, lifted heavy weights in his youth straining his heart, had cholesterol in the double figures etc. I have always kept myself fit, not fat, eaten lots of fresh veg and had quite low cholesterol.

All along I was sure that there was something wrong that did not fit into a standard heart attack 'box'. He said he would arrange for the test and asked me to go back to the waiting room. I was still in a lot of pain and it was now gone 5pm. I went to the nurses station, told them I had asked now 5 times for some painkillers, I still got nothing. I even heard one nurse say to another about how it was not very busy that day! So what was their excuse?

By 5.30pm the consultant came back and told me I couldnt have the blood test because I had to start Warfarin as soon as possible to get rid of the clots and stop any more forming or the ones there getting any bigger. Warfarin would make one of the tests non viable as it stops clots forming in the blood. I would have to wait for 6 months and then have the tests!

With the pain, the hot environment and the fact that I cannot stand illogical reasoning I started to get quite annoyed. I said why not give the test now before I start the warfarin. He said he understood my logic but I really had to start the warfarin now and unfortunately the Heparin they had given me the day before would also affect the result. So I asked if realistically I would come off the Warfarin in 6 months, he said it would be unlikely and it would be advisable to stay on it for the rest of my life. I asked how I would ever have the test then? I stated that when my father came off Warfarin he died, and even starting the stuff was causing me a fair bit of anxiety. Would it not be better to take the risk now, let the Heparin clear from my system and have the test and then I will be able to accept the outcome and live knowing why I was on drugs for the rest of my life at the age of 37.

We went in this circle about 3 times before I got up and walked out in tears with pain and stress. After I calmed down I went back in, straight up to the nurses station and told her I had already asked 5 times, this is now the 6th, give me some pain killers. The doctor had just told me that without the anticoagulent I could die at any point (pulmonary embulosis is the cause of a lot of sudden death syndrome victims). The pain was horrible, and after 6 hours of waiting in a hot room on an uncomfy chair I now understand why some patients end up getting violent, at this point I was on the edge. They gave me 2 paracetamol and 2 ibuprofen. I could have walked to my van hours ago and got things that strength!

I sat back down with the consultant specialist and agreed with him that I have no choice but to start the warfarin. I pleaded with him to arrange the blood test, he said there was nothing he could do as the haematology department would not do it due to the anticoagulent.

At 7pm I eventually was given the medicines and sent home.

At 3am Tuesday morning I thought I was going to die. The pain was so strong that I was contorted and not breathing apart from the odd gasp every 20 seconds or so. This passed and came back several times, the pain had moved into my shoulders and my stomach felt like it was swelling, this was the same as I experienced with the heart attack. At about 7am I was in complete agony, I told/gasped to Kat that I loved her and not to worry, everything would be sorted out thinking all the time that I was actually dying at this point. I called the emergency doctor who got the ambulance to come again. They took me to A&E again, they gave me some much stronger pain relief and although I could still feel very sharp pains in my right lung the others felt more like background noise, like hearing a song in the next room, dull but still noticable. As the morning wore on they carried on reducing in 'volume'. A&E wanted to transfer me to the same ward (EMU still no Rod) for overnight. This is now strange, monday I did not want to go to hospital, as my dad died when he went the second time with chest problems. By the end of monday I wanted to stay in as I knew it was serious. Tuesday I wanted to stay in through anxiety and pain, but after the experience in that ward I really did not want to go there again. The lady who works on the counter there is one of the rudest people I have had the misfortune to come across (dont forget I teach bottom set kids! so I encounter a lot of rude people (this includes some of the staff ;-)).

The admissions doctor was very kind and understanding and agreed that it would perhaps be best at home with pain killers. I got some strong stuff and came home. All was now well, or at least getting there. From what I understand, now I am on the heparin/warfarin combination there is very little chance of the clots growing or causing much more problems, they can only now shrink in size and get broken down to nothing which should take less than a month.

I went back this morning for the  blood test that decides the level of warfarin I need. The consultant from monday/tuesday had also managed to arrange the special blood test that we had argued about, shame though as now I have a lot more anticoagulent in my system than the day before, so the test will be even less accurate. Hopefully now though I will be proven right, that my heart attack was not a standard one and there is something causing my blood to clot, this may or may not be genetic. We only had one disagreement today.

The first day I took the Warfarin I became very itchy, the second time even more itchy to the point where I am constantly scratching somewhere. I told him about this, he said it was the Tramadol. I said it cant be as I was itchy before I had the tramdol. So he said it was the oral morphine, I said that on monday I was not itchy and had oral morphine. So he said it was a delayed reaction, why can they not admit when they are wrong. All he has done has prescribed me even stronger painkillers than the oral morphine! I will carry on the tramadol until tomorrow as I have to drive to the hospital again tomorrow for further tests, then use the stronger one at the weekend when I dont have to move.

On to the important things, several doctors have said it will be a long time before I should consider windsurfing but should be able to go again. The only one who said just give it a go when you feel ready is the one I will listen to ;-) So hopefully sometime next week in low winds I will go and get wet, this depends on the damage in my lungs which I cannot tell yet due to resting all the time.

Finally I want to thank a couple of people who read my last post and sent me kind messages, they really meant a lot to me as I did and still do feel quite low after all this. Thank you Pete and Swagger (and also Ringo for the extra donation). To end on a positive note, since the heart attack I have been waiting to get that feeling a lot of people describe, where they see their life as a second chance and live it to the full every day. I really feel like that this time, and I think Kat and I deserve some good luck now so I will make sure it happens.

6 comments:

  1. Sorry to hear about this mate and hope you get better soon.

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  2. You're a fighter - and no doubt you'll get to 10,000 NM's before your final water start !! :-) Get well soon. Tris

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  3. It's a difficult call to label someone with a coagulation defect for the rest of their lives because the coagulation analysis wasn't done at the right time. Some DNA based analysis could have been performed - which isn't affected by the anti-coagulation therapy.
    In our hospital laboratory, these test have to be performed post event, otherwise all the common tests which are markers for pre disposing pre thrombotic conditions are raised and interpreting the test results which have a turn-around time of 2 weeks difficult to interpret. Any test results will have to be repeated at least 2x to confirm that there is a problem.
    I'm sorry that the situation was distressing but as always there are very few medical staff around who really know what to do.
    My best advice is to become the informed patient and push for testing via haematology clinic and medical staff advice.
    Hope this helps R

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  4. Thank you and I am trying to become more informed. After everything I have read the only thing that rings true instinctively is either a lack of hydration, or a bad blood vessel in my leg causing a clot which made its way to my heart and fortunately this time did not cause a heart attack like it id last time.

    The Haematology dept has now done many tests, all have come back normal so I have been passed to a lipid specialist who will try to lower my now high cholesterol. I never had a problem with this until they put me on statins for the year following my heart attack.

    I understand the problems in the health system at present, being a teacher we suffer the same, too much to do and too little time, with too many policies forced upon us by people who have no idea what happens in the real world.

    Thanks for the comment, I really appreciate it.

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  5. I hope you're feeling better.

    I have found 2 adjunctive treatments to help my own heart condition:
    1. massive doses of ubiquinol, per the recommendations of Dr. Stephen Sinatra
    2. the Zone diet (with lots of fish oil)

    The ubiquinol/COQ10 counteracts the loss of COQ10 due to age and/or statin drugs (low COQ10 causes muscle weakness and pain). The liver normally produces CO10, but statin drugs prevent that. Note that ubiquinol is the more effective form of COQ10. Your actual blood levels can be measured.

    The Zone diet was designed to reduce or even reverse plaque buildup; when combined with fish oil it is easy to achieve a triglyceride/LDL ratio of less than 1 (and an HDL to LDL ratio of close to 1).

    Fish oil cannot be taken in large quantities by someone on a blood thinner, since it acts as a blood thinner. If you are still on a blood thinner, taking fish oil would mean easing into it while reducing the blood thinner based on ptime/INR tests. Obviously, you would have to consult with your physician.

    Thanks for a very informative and enjoyable web site.


    ReplyDelete
    Replies
    1. Correction: triglyceride/HDL ratio of less than 1.

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