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Medical Observations:- I REPEAT, AND MOST IMORTANT FOR SUFFERERS, I AM NOW OVER 2 YEARS INTO THIS AND, DESPITE SEVERAL FRUSTRATIONS, SEE BELOW, AM WELL AND TRULY STILL CRACKING ON SO BE POSITIVE. THE FOLLOWING MAY HELP UNDERSTANDING OF THIS A BIT.
24/11/09............Nuclear Attack & the Oncologist I stress again that I am not writing this in a "feeling sorry myself" way. That is not me but so many of my friends are following this and many others the blog iself that it could become a novel - lol. I will cut it down as short as possible. Yesterday was a hugely exhausting day. We set out early to Chichester as crashes reported all over and the weather atrocious. There from 8.30 am to 1.30 pm for the nuclear kidney tests. Easy injection at 9.30 am then three blood tests at intervals over 4 hours. Home 2.15 pm. 2 hour rest then Vicks came we were off to Havant for the Oncologist at 6.30 pm at the Spire Hospital. Went early but another crash on way so we arrived about right really with forms to fill in etc. We came out at 7.30 pm and home at 8.15 pm totally drained. Vicks rushed home to Ant and E. Dr Suhail Baluch was entirely impressive. He gave us nearly an hour of talking all the way through the build up, the type of tumour, the processes of the chemo, the types of drugs,our mental states, everything. He was entirely positive but said it cannot be wishful thinking. Because of the chest problems, they cannot cut me up so can only chemo it and radiography is useless on the liver as they are all in amongst it - uggh. They can only shrink it but not kill the tumours so the hope is to keep 'em shrunk. I have to say I see him as my Merlin of Oncology now! Slightly odd was his observation that further looks have indicated the fibrosis was not so bad as thought. They now think it was there but more emphysema, holes in the lungs, again not, necessarily, caused by smoking. Just as bad, hence my breathing, but I think it proves it is all a bit of the arts as well as the sciences. They really do grope in the dark on chests. I think that is all I'm going to say really. I have a B 12 injection next Wednesday or Thursday and then the following week the Chemo starts over 3 weeks as the first session. Now I will allow myself some emotion! My family have been superb. Vicky is nearest, of course, and has more time, but all of them have been ringing, Jon all the while, and lifting our spirits up from London and Horsham and Sheila, though down, has been the best "Carer" in the World. Sheily feels better after such a great talk with Dr Baluch. This morning I received the following from Vicky and she told me not to cry! I was crying before I got to that bit!! Quote To my Dad from his Girl...... Morning Old Boy A few thoughts from me on the challenge ahead! You've been so brave so far and it has definitely helped us all to stay strong. I know you are worried about mum but I think you should spend a bit of time thinking about yourself too..... You are mum's everything but she will be ok and you know we will look after her. The chemo will be hard and I'm sure you will have some rough old days ahead. So it's time to concentrate on you. So to keep you strong I wanted you to know you've always been an inspiration to me, a slightly stubborn one in recent years, but an inspiration none the less! For 38 years I've always believed -"My Dad will know that"; "My Dad will be able to do that"; "My Dad will find a way" and I know your courage will carry you through! I really believe that the chemo will work and also I really liked the Oncologist. Now I didn't send this to get you crying so you had better not be doing so! I sent it to keep you strong, and to make sure you really know that we are all in this together and you must let us take any worries off
your plate so you can concentrate on yourself. Love ya loads - will ring later xx Close Quote And later from Jon & Jem that's very sweet from Vicks and very very true. Whatever may happen Dad, we will be there for you and Mum and you have to get yourself ready for next week. You're a tough old sod really, so get the gloves on!! Love to you both J and J xx Oh, Having Swine Flu injection tomorrow. A must said Dr Baluch to fight all infections during chemo and, as Dr Fooks phoned me as we got in late last night to check on me, he has set it all up. They have had little and have to do it in sets of 10 people. Tim Fooks and all the PMG have been marvellous in all this. What more can I say. Love you all.
21/11/09.............small update " 'ere we go' ", " 'ere we go' ", " 'ere we go' ",. Heard late last night that we see the Oncologist at 6 pm on Monday at the Spire Hospital, Havant. He has all the bumph now and will now, presumably, decide on the course of Chemo needed. Not looking forward to that at all but we do want to start the counter attack urgently so good news that. Vicks will be coming with us. Once it starts Sheila will have to drive back each time but Vicky insists that she will be there for us. Jem and Jon are coming down again tomorrow for lunch at V&A's so we will all be together again - those boys are eyeing my good wines and I'll take some over - only joking about the 'eyeing'!
20/11/09 Small Update..................... Just to say we are ok now it has sunk in a bit. Just want Monday and then the Oncologist over with so we can start the counter attack. Thanks all, so much, for your support and interest. R&S
18/11/09 - Dr Tate - St Richards……………. An odd day really as this was, originally, a standard, regular, IPF review appointment totally overtaken by the recent developments and news. Dr Tate had received the Liver Biopsy results and advised it to be - watch spelling because we have decided not to look it up - adenocarcinoma. The only way to tackle it is with chemotherapy as they are in two places and could not be cut out, particularly with the IPF. It will not cure/kill them but, hopefully, it may shrink them and take the pressure and pain off the liver. I am not going to prolong this but so many are in touch and want to know. Thus, the next step is back to Chichester next Monday for my kidneys to be, seriously, nuclear tested for how they will hold up to chemo. I think that leaves the head, knees and feet to go - joke - and we have spent more time in Chichester really than home in the last 2 weeks. He has taken me off azathioprine which is known to irritate the liver, (but not cause cancer), and has changed my steroids to a different one, dexamethasone, which is known to help shrink tumours whilst still treating IPF. What a ‘game’ this is!! Effectively, IPF is in the back stalls for time being. Then I see an Oncology specialist at the Spire Hospital at Havant soonest so he can assess the type and strength of treatment. We hope that can be at St Richards in the Chichester Suite but it may be at Havant, 20 minutes further. I will update. Feeling ok about it all really, now it has sunk in. The liver hurts but mostly at night in bed and I have some special pain killer if it gets really bad. Sheila has come up a notch which helps and all the ‘kids’ have been great. Vicky was with us today yet again and is coming on Monday. Finally, good news this morning is that the Jeep needs £2,100 spent on it and, at the moment, I just cannot embrace that, let alone afford it. What a World but the real fight is now on. I feel a bit like Wellington at Waterloo, beset on three sides now and waiting for Blucher to turn up at the Belle Alliance with his Prussian troops! Best to you all.
11-12/11/09 - The Lung Biopsy Back to our second home of the last 10 days, The Nuffield, for the liver biopsy procedure. Dr Burns had rung me early in the day to explain it all and to say it entailed lying very still for 6 hours afterwards so, with the operation due at 2.15 pm, I would not be allowed out until around 8.30/9.00 pm. Following the news of yesterday, we had to gird our loins for today but Vicky, bless her, was to the rescue and took us there and Sheila and her were to wait for, and with, me in the room for the session. The Nuffield have been fantastic but today, of all days, the bloods taken pm on Tuesday had been left in the fridge and only found just before Dr Burns was ready to start. Thus they were useless and as it involves clotting, the biggest threat being bleeding after the procedure, a new sample had to be rushed to Southampton before they could go ahead. We sat until 5.40 pm before thay could go ahead with a half hour operation. I understand that several of the staff were fuming at this sad accident. Anyway, it all went well. A highly 'careful' operation of finding where to put the needle into the liver, missing the lower lobe of the lung. It would terrify me having to do that. This was done with Ultra Sound. Then ten minutes of freezing the area above the liver which was the most uncomfortable but very mild discomfort really. All I felt of the actual 'grabbing' was the thust as she thrust the needle in after an instruction to stop breathing - only for 5/10 seconds though. A check to see if the specimen was good enough and then back to the room with strict instructions not to move for 6 hours lying flat on your back. Dr Burns again apologised for the delay knowing I had not eaten since 7.30 am and drunk since noon. Roll on 10 pm when I can have a cheese sandwich but I can now sip water. Because of the delay and timing, I now had to stay in overnight so Sheily, who is so sadly down on the floor, and Vicks waited until 8.30 pm and then had to leave as the hospital starts to lock up. Vicky stayed the night with Sheila, bless her, and will pick me up at 10 am in the morning. I felt fine but difficult to watch tele flat on you back. No pain, other than the liver pain I have been having. I was fully monitored on SATS every half hour until 12.10 am and the would watched for any swellings etc. Dr Burns came in to check on me around 10 pm and was very pleased with everything. All clear by 1 am but I really only slept for about 3 to 4 hours. I want to finish this by saying how nice Fiona, the Senior Radiographer, was to me over the two days but, for sheer care and attention on the ward, both Karen and Mel were superb. Kind, understanding, to us all, lots of humour and we all wish to thank them so very much. Karen saw us off this morning 12th. Glad to be back home. Now a five day wait for the specimen to be sorted and the Dr Tate and a plan of attack on these b-----d things inside me. We all feel bloody awful really but, by God, we'll have a crack at warding off yet another unwanted boarder! PS: Somebody remarked, 'how can you manage to keep the site going with such news'? Well. in a way it is, for me as an old Geek, a way of partly blocking it out and to actually set it all out is quite therapeutic. Please don't think I want to report all this but, whilst it has drifted off IPF for a while, it may all help somebody who finds themselves suddenly beset with another battle to be fought and won!
11/11/09 - A Crashing Blow to us both........ After the good news of the first tests, our World was shattered yesterday afternoon when Dr Stone had to tell us that the CT Scan had revealed cancer in the left upper lung and this had been transmitted to the liver too! Bloody hell! Just not what we expected. Yes, we had worries about the liver but all the regular and myriad tests, regulard bloods, X-Ray in August etc., had not indicated anything like this. Sheila is distraught, poor thing, and I am a little better than her. This is a positive site, I think you can see that, but now we have another huge fight on top of the IPF. Vicky, Ant and Elizabeth came over last night and we had a few tears but it geed us up a bit. Jon and Jem are fully in touch too from London. Today I go back to the Nuffield for a liver biopsy - a needle thrust into liver for a specimen. Then 6 hours lying flat to avoid any bleeding. Vicky, bless her, is taking us and staying with Mum. The results will be known next Wednesday when we see Dr Tate as it now all passes back to him. The results will show which treatment to get, chemo normally, and it will attempt to treat both. Can't say more at the moment, still reeling. Life is very strange sometimes!!
09/11/09 - CT Scan today, result to tomorrow. Watch this space
05/11/09 - Fireworks, no, Sparklers! - first tests at the Nuffield Just to say that things went very well yesterday on the first two tests - Gastroscopy and Colonoscopy. I'd had the latter before, ego busting always but this time I felt nothing. Odd, as I had at least expected to experience some difficulty in swallowing the camera for the G one. The injection must have been good as I only vaguely remember being still on earth. Sheila said I was back in room in 15/20 minutes and was fully awake within half an hour. I have to say Doctor Stone is amazing. Nice, open, absolutely clear and frank about everything and very helpful on all things. OK it is private but we are very impressed with this episode. So excellent news on the tum and bowel. All absolutely clear with no signs of any translation of anything from a condition in the liver. We were chuffed at that. Now I await the CT Scan - staging CT they say, of lungs, stomach and lower abdomen - which is the one which will show up what they spotted in the liver on the ultrasound job. It should be before Tuesday when I see Dr Stone again. On an up now!!!!
03/11/09 - Visit to Nuffield Hospital, Chichester on 3rd November, 2009 Consultant: Dr A Stone Dr Stone arranged for an immediate ultra sound while I was there and it revealed, apparently, something odd with the liver which seems to causing the pain and general discomfort. All previous blood tests have revealed nothing, at least those 6 weeks ago. He then arranged for a Gastroscopy and Colonoscopy for Thursday 5th November and a Staging CT Scan to be done at St Richards as soon as possible. Depending on that I am due to see him again next Tuesday 10th November. He said he would be in touch with Dr Tate for background on the IPF side of things. As you can imagine, Sheila and I are over the moon at present.
GP - 2/11/09........... As instructed by the hospital, I went to my GP to report the Sunday. Fortunately, I managed to see one of the senior partners. He immediately set up a visit to a Gastroenterologist Consultant at the Nuffield in Chichester. We finally decided to use BUPA instead of just paying the premiums and then avoiding it to stop loss of no claims bonuses and premium increases due to our age, a ridiculous state of affairs - frankly, one does wonder about it all though. Anyway, talk about immediate, literally as we got back home the Nuffield were on the phone to book an appointment for 3.15 pm on 3rd November with a Dr Stone. Sad, as I guess the NHS could not do it for weeks unless one actually collapsed, but amazing. We await to hear on timing for the CT Scan but it will all be part of the diagnostic process. Watch this space. I can fight the IPF but I can't do that with these bloody 'stomach' pains on top!!
A&E 1/11/09
Bad pain on right side again in night so on an apalling morning, wind and rain, Sheila and I set off for A&E at St Richards, Chichester, which is what the doctor said to do on Thursday if had bad pains again. Poor Sheila. There by 7.30 am. Very quiet but, apparently, they had had a very violent and bad night - Halloween I guess and what an inditement of our society even in a 'sophisticated' place like Chichester. I feel so sorry for the hospital staff. Anyway 3 hours of getting nowhere really. They do not scan on Sundays and the young lady doctor did not think it was anything to do with gall stones. Effectively, I was given two Co-Dydramol tablets, pain killers, an ECG which I assume was ok, a BP test and some oxygen for my IPF. The pain had eased by the time I left but it does that during the day anyway but I was left with twinges and an uncomfortable feeling in my guts which I still have as I type this at 5 pm. I have no appetite at all. I hate this whingeing bit but I really don't feel too good and have the feeling that I am not going to get anywhere. It seems I must wait for the private CT scan and put up with any discomfort in the interim. So be it.
A fuller observation 31/10/09 I always go on about positivity and deeply believe in it. Just sometimes, however, it can take a bit of a knock and the last 10 days have seen me feeling like I have been in the ring with Rocky Marciano for 11 rounds. I was fine up to a couple of days before the Cornwall trip - see Life Obs 6. Then this damned clear mucous started to get to me producing an awful morning cough, a feeling of nausea and total loss of appetite. Just what I wanted before the Cornish trip! But one blunders on and I saw the trip through but I know it ruined it for Sheila as she could see I was not on normal form. We returned a day early and, frankly, up until today I have felt like - - - - ! Last Thursday, this was compounded by waking at 5am with a really bad pain under my right ribs. The mind goes into over load with IPF so I went to the doctor although I hate it in case they send me somewhere. Saw a new Doctorchap who was very thorough and tested several things and thinks it may be gall stones. I think that is what I really need on top of the rest of it. Not a mention of Swine Flu and I forgot to ask! The net result is that I am to have CT Scan of the tummy to check it all out. I have opted to go private this time as we continue to pay through the nose and then never use it because they put the premiums up due claims and age. All a bit daft really so, with the time element, I await an appointment quickly. Thus I am a bit back against the ropes and old Rocky keeps bashing me. However, I do feel a bit better this morning. The ‘under rib’ pain has only been slight and I am, for the first time in days, looking forward to my lunch time red wine. Positivity will win; it must
Just an Observation - 28/10/09 Still not a word from local GP Group on Swine Flu jab and I'm supposed to be top of risk list? See Obs 6 for how I feel. A low at present.
Bought Today - an Oximeter.....17/10/09 My PFD Group seem to feel that knowing your O2 readings and pulse rates at any given time, at rest or with some activity, is a good thing so I bought one via Amazon and it arrived on time this am having only ordered yesterday pm. Amazing. Now to play.
Whoosh as of 02/10/09..my 68th Birthday Not because it's my Birthday but over the last 3 days have improved enormously. Maybe because I have finished a course of Clarorithmycin - that does upset me? Feel rather good at present. What an oddity this all is and it is so unlike me. I always used to just weather through. Looking forward to dinner at the Half Moon tonight with Vicky and Ant and Elizabeth is coming to see me before! Hooray!
As of 29/09/09... On a down slope again but not mental this time - lol! Just feel rough, chest, breathing etc. No detail and that is the way of it! Must get on an up slope for 68th on Friday!
As of 29/08/09 Feeling a lot better and not hooked on the Diazepam!!
As of 27/08/09 Had to go to the Docs in the end. Unfortunately Tim Fooks away but Dr Serjeant was very helpful and majored not so much on the known IPF symptoms but on the anxiety side which is really troubling me. Most times I can handle the nasty physical problems of the condition by being positive but, on occasions, one's thought process does go a bit negative when one is low and, no matter how hard one tries, you cannot get off negative thoughts and they do tend to take over. Very disconcerting and debilitating. I thought I would report this as anxiety is one of the awful side effects of IPF and it may help others to discuss it. I will report progress as it goes along and for Sheila and the family's sake, I so want it to work. They worry so much.
As of 26/08/09 Not to dwell on it but important to keep this updated. Not a brilliant two weeks really. I have a lot of clear catarrh for some time, not infected but enough to make me cough for a long time in the morning to clear it. It seems to emanate from the sinuses rather than the chest actually. This, in itself, has not helped a feeling of being a bit more breathless. This, in turn, leads to feelings of anxiety, particularly in the dead of night but sometimes in the day too, and these are not easy to dispel and are quite frightening. At the same time, one does not want to worry those around you so it all becomes a bit difficult. As an example, although I slept well until around 5 am this morning, we were up at 5.45 am as we both could not then sleep. It makes for a very long day when this happens. I do not feel inclined to seek medical advice yet but will if it continues. I am not sure that anything can be done beyond what is being done now really.
Chichester, St. Richards, 10th August, 2009 Well, all seems to have gone reasonably well today. We got to St Richard's, Chichester, about 9.30 pm and checked into x-ray and then went for LFT's. Consultation being at 11.30am. Marcelle, the LFT expert is very thorough and it took about 30 minutes. He reported that the gas transfer result was 2.8, my best result by 0.1 ever in 2.5 years. I find that a bit odd as I am sure have become that bit more breathless over the last few months. Now, I am hopeless on all these tests and asked what it meant in terms of my lungs. Shock horror, he said it meant that I had roughly 28% of lung function - a healthy lung reading being between 5 and 7.5. However, the good news is that I am at least stable. All that huffing and puffing is quite exhausting over 30 minutes though. Back down to x-ray and a fairly short wait on a busy Monday. In and out in no time and rollicking from Sheila for not tucking my shirt back in with about 20 people staring at me. I said they had to say it was ok and may have to do it again so I was conserving energy. Anyway, it was ok so up to the Consultant anticipating at least an hour's wait and then an hour's overrun like last time. Holy Moses, two people had not shown and seen at 11.10am, 20 minutes early. As entered I told Dr Tate that I may need an ECG too  with the shock and, give him credit, he did laugh and said it was highly unusual. Firstly, the x-ray was no worse, or better, than last time which seemed to please him enormously. He then waxed eloquent about the LFT's being the best ever, even by 0.1. Thus he considers me stable but we all had a long chat about dosages. He feels we should stay on the 7.5 pred, 150 aza, NAC and Omeprazole. He said one could argue that, as my LFT's had been broadly the same for some time, we could even try coming off the pills but if everything went South then it may be difficult to recover back to where we were. So we all agreed to take the so called 'safe route' of staying where we are. This discussion embraced his comments that while they are working hard on the causes and treatment it remains a misty area with so many different brands of fibrosis some of which do respond to treatments and some which just don't - mine is the latter as we knew. This is a bit rambling but I think it is important to report as broadly as possible for comparison purposes by all. It may help or relate to something. Dr Tate remains very conscientious, quiet and efficient. I mentioned a trip back to Cornwall in October and, although I use it infrequently, he immediately said he would arrange for a small O2 supply for the trip without any prompting. One downside was the 35 minute wait after it all at the pharmacy for the 3 months NAC supply. I have no idea what they do in that pharmacy. For Sheila, it was all good news as she is terrified of what we will find every 3 months so I am chuffed for that. So, we escaped early and were able to meet Vicky, Ant and Elizabeth at Midhurst for Vicky's 38th Birthday lunch at Prezzo's much earlier than expected. We had hoped to do a Loch Fyne but the one there opened in June and has already closed - odd that, despite the times, as it is an affluent area. It was very nice and we have brought Elizabeth back here until 9pm as V&A have gone to the cinema to see the latest Harry Potter film. There will be no nap today!
Swine Flu in passing....13/07/09 Oddly, I had to book blood tests today so I just asked about swine flu and the venerable, sorry vulnerable, few. The desk were not too well informed but, give him full credit, my Doctor, Tim Fooks, phoned back within 3 hours for a chat.
He confirmed I am one of those who they would want to treat immediately for obvious reasons. Initially, that treatment would be TamiFlu and then the actual vaccination when available. I stressed I was not a panicky one and it was only asked in passing. He said it was good to ask and to watch for any fluey signs - fever, sore throat, infected mucous, aching joints, severe headaches and so on and to contact them immediately - not go to surgery. I said I'd be right down then, I had all of those..........noo.... a joke.
Whether they would have contacted me I don't know but I guess they are inundated with 'hoax' fluers these days.
Anyway I hope this information may help.
Anthony, son in law, came over to us for bbq after work last week - Vicky and Elizabeth already here - and his office had had two scares and he wondered whether to come because of me. Of course, we said yes but we rigged me up in a mask for when he arrived. Made us all laugh a little
Chichester, St. Richards, 16th June, 2009 My third time as a volunteer patient for the CMEC (Chichester Medical Examination Centre) for the morning. This is the exam for Doctors moving up the ladder and they need patients , with real problems, to be examined in front of rather tough Examiners. I did it last year too. 
It can be a bit boring but it is a very small way to repay the time and effort given to oneself by the medical profession. I say boring but, my word, are the Examiners tough on the young Doctors and this time the other chest patient failed to show so I was breathing, panting and saying "99" like mad - quite exhausting!  I lie on the bed and cringe sometimes when they either get it somewhat wrong or muddled or, even worse, almost dry up - you cannot help them. I have even wriggled my so called "clubbed" nails to help some of them but that does not work. Some bright sparks today, only one wally that even I failed! It seems, and that has to be good news, that most of them feel my problem is moderate not desperate, yahoo! To balance that, all of them said it can only get worse! Open the red wine! As usual, my thanks to Doctor Dewhurst, and his team, for their courtesy and good luck in all they do.
13th May 2009 - Update.... Just to say that over the last week I have begun to feel that bit better. The yucky feeling has all but gone and I have my appetite back a bit. IPF wise, other than the increasing breathlessness, all seems generally ok. I do believe in viruses now! Looking forward to some good weather now.
28th April 2009 - Consultant Review at Chichester..... I hate whingers! I am now going to whinge a bit so I hate myself, a little bit. 11.45 am appointment. We got in to Dr Tate at 1.15 pm. I know it is difficult but having arrived early, we always do, it was an interminable wait. They never say anything or explain the delay, that would help, at least. Then one waits 30 minutes for the pharmacy. Anyway..... The IPF side of things seems ok. The x-ray was ok and showed no signs of deterioration and, thus, remains better than the ones when I collapsed. The LFT results were missing, much to Dr Tate's annoyance, but I recalled to him Marcelle's comments that they were no worse than last time. He will write to me to confirm this. SATS at 96 were very good, as were the bloods which check that the Azathioprine is not affecting my liver or kidneys. So, IPF wise, looking good. The "virus" side of it remains odd. I still have this muzzy, tingly, head and feel generally yucky - a medical term which Dr tate readily accepted. I just do not feel 100%, whatever that means in my terms. Dr Tate had no real ideas but suggested I took the anti bacterial medicine that Dr Fooks gave me and I had not taken yet. He is also asking Dr Fooks to let him have the Neuropathy tests done in Cornwall for him to review so I am pleased about that as my numb fingers and toes can be extraordinarily annoying and Dr Tate says he can check whether it is linked to IPF or not. What a shambles I am and I find reporting these things so embarrassing really. People must think I am mad or a hypo and I certainly am not the latter! 
Apolgies for the cartoon, way over the top, but it really tickled me! Overall, if I can get over this other thing, I am very pleased by the IPF side of things at present in relative terms.
12th April 2009 - some positivity returns.............. God, how we hate Easter with no pun internded! My collapse on Easter Saturday 2007, Sheila to A&E at 4 am Good Friday last year and this year I feel/felt dog rough again! Ban Easter. Following on, I felt so bad come pm 8th that Sheila persuaded me to ring the Doctor. (I avoid this like the plague as it brings huge fears of being sent back to hospital). Fortunately, Tim Fooks was on triage and felt it best if I came in to see him at 4.30 pm. Well worthwhile. He tested my SATS, BP and did an ECG. All ok although the last showed some "strange beats" occasionally. Having said that, Tim said it was a better ECG than the one they did just before my collapse in 2007! We went through the nausea, headache, anxiety, etc., and he immediately took me off the powerful anti-biotic I had taken since Monday. Given how I feel/felt, he thinks it could be a virus and it must take its time and anti-biotics do not help viruses. Of course, given my reduced immune system, that could take a little while. He advised me to take the O2 more regularly during the day. As I type this on 12th, I do feel better than I did on the 8th. I still feel a bit rough and have this continuing tight, if moderate, muzzy headache and tummyish feeling but have recovered a bit of my appetite. I hate reporting this sort of thing but the site must stay true to itself - helpful, honest and humorous!
8th April 2009 - negativity One thing I have noticed is the odd day, spell, of negativity where one can almost panic a bit. It is the thinking that this is not getting better and probably slowly worse and that is entirely frightening. Breathlessness is an awful feeling. Today, after a few nights of sleeping badly, partly due to rowing cats, coupled with a bit of a cold and headaches, I felt really down and very anxious. This is part of the deal, it seems, but no less unpleasant. I also have that awful feeling of making Sheila's life, and the family, totally messy as they can never plan anything and, because of that, I tend to keep how I feel quiet on these odd occasions. However, it is very difficult to be positive and I guess that shows. Anyway, chin up, I know this phase will pass and I'll be fine again for a while. Just hope it's quick!!
12th March 2009 - LFT's and X-Ray check Saw Marcelle late at Chichester due to horrendous traffic problems - 45 minutes to do last mile to hospital. That stressed me but Sheila sat me down and he saw me quite quickly really as we had missed the 9 o'clock appointment. Good news on the LFT's, they are the same as last time so no further deterioration this time. I weighed in at 98 kilo's without shoes! Now this is interesting as that equates to around 15 stone 6 lbs only with clothes on and, at home, our scales give me 16 stone or thereabouts so they may be "over-weighing". If this is the case there will be whoops of joy from Sheila - not about me but her!! The X-Ray department saw me immediately and we were in and out in 15 minutes. Of course, I will not know the outcome of that until I see Dr Tate on 28th April next. Summation: keep puffing on boy!!
8th March 2009 - Love Handles and breathing... An article from Daily Mail which, in my case, is far too close to truth I think!! Love handles are not as innocent as their rather reassuring name suggests, a study reveals. It found that carrying excess fat around your middle makes breathing more difficult and impairs lung function. The study, by the French National Institute for Health and Medical Research, looked at the medical histories of 120,000 men and women. Each had their lung function measured in relation to their body mass index and waist circumference, and their smoking history recorded. The team also looked to see if there was an association between lung function and metabolic syndrome - a collection of health problems including high blood pressure and cholesterol which are strongly linked to carrying excess weight around the middle. During the study, abdominal obesity was defined as having a waist circumference of greater than 35ins (89cm) for women and 40ins (102cm) for men.  Study leader Dr Natalie Leone said: 'We found a positive independent relationship between lung function impairment and metabolic syndrome due mainly to obesity.' The results were independent of a person's smoking history and their overall body mass index, she told the American Journal of Respiratory and Critical Care Medicine. Dr Noemi Eiser, of the British Lung Foundation, said: 'It is widely known that obesity and a lack of exercise is detrimental to your health but this research highlights how being overweight affects your lungs. 'A reduction in lung function was not just recorded for the morbidly obese, but women who had a waist of 35ins had an 8 per cent reduction. 'This reinforces the need to lead a healthy lifestyle and how a small accumulation of fat can have a significant effect on your lung health.' In a commentary Dr Paul Enright of the University of Arizona said there is now enough evidence to include waist measurements as part of routine assessments of lung function. 'Abdominal obesity could then be highlighted on the printed report so that the physician interpreting the report could take the effect of obesity into account,' he wrote.
Next Check Up put back to 28th April......2nd March, 2009 My next check up has been put back from 17th March to 28th April and I am not too happy about that. It is due to administration or something. As a result, I wrote to Doctor Tate and he has replied saying the bloods continue to be ok and to carry on and have the lung function tests and a checking X Ray on 12th March ahead of the April visit. I just hope I do see him this time as I am that bit more breathless, probably due to the further weight increase but I do need a chat with the top man. This damned disease is so vague in its knowledge that it is easy to become rather frustrated by it all!
Winter weight gain, groan..... 3rd February, 2009 I have hit 16 stone in my clothes and the girls are cross with me but I eat very little really and certainly not any fatty stuff. I guess it is the continuing use of prednisilone and azathioprine plus nearly two years of not smoking. These, coupled with a lot of inactivity over the winter months, have to be the cause. (I am excluding my daily red wine intake in this summartion)! The trouble is that it makes me even more breathless on very little effort. I need some exercise but it is a chicken or egg situation, I feel. Exercise slays me!
Medical Thoughts for the New Year - 7th January, 2009 I have updated my outline thoughts on the Home Page. However, whilst I remain entirely positive of one's ability to fight this illness, there are odd moments of breathlessness, slightly on the increase, where I could easily "panic". By that I mean that awful feeling of "I'm not going to get my breath back this time". I am sure all IPF sufferers have this feeling from time to time. My worst times are getting out of the bath or a real set of stairs. Have a shower you say but that is worse as it really does take my breath away in there. I can honestly say that at these times it does feel as though you really ain't going to get your breath back and it is very frightening. Luckily, though, with deep breathing and calmness it does come back and I have not yet needed to resort to regular oxygen other than a placibo burst at bedtime. I rely, sometimes, on my inhaler at these times. As you can see, hopefully, this site is supposed to be fun and cheer but the one worry I have, and this site has to be open minded and honest on its medical side, is what I read the other day. Pulmonary Fibrosis patients will suffocate in the end! Great. Of course, there will be treatment to mitigate but it does not matter how good your other organs or system are, if your lungs don't work in the first place then the rest won't either!
Hospital Check Up 16th December, 2008 A bit disappointing as Dr Tate was covering another Consultant and I was relegated to a junior SHO training to be a GP! Very pleasant and I have to say that Dr Tate had read my 'pre visit' letter and studied other tests. However, I have not seen him for three visits now. Anyway, my slightly poorer lung function tests were confirmed - vis 5th December - but all else seems to be taking the normal course. So I am fine as it goes. Mentally 100%, physically a bit dodgy - LOL. Nonetheless, Sheila and me have decided to put off a planned trip to friends villa in Lanzarote at end of January. We just do not feel that necessary confidence to be that far away from family and medics and nobody should read anything bad into that. We shall do something else in the UK!!
Observation 5th December, 2008 Lung function test at St. Richards. Dear Marcelle. Another long chat on all matters and he , and his family, are off back to South Africa for 4 weeks on Monday. Not so good today and the tests show a bit of deterioration. I must use the Serevent inhaler twice a day to help, he says, and I have not been using it! I will now. I see Dr Tate on 16th for the full review.
Observation 14th Nov, 2008 I feel b..... rough, actually, and have felt that for over a couple of weeks now. I have odd chest pains, sometimes I even think it is more an upper stomach thing but it all radiates out around the chest particularly in the upper right area? I also feel very tired but do not sleep well at night. I am also conscious of becoming even more breathless on short walks now. This is not a whinge and it is on here as I just cannot tell Sheila or Vicky. Don't ask me why but I do not want to worry them and there is no way I am going back into hospital so I shall ride it out!
Chichester, St. Richards, September, 2008 Due for check up Tuesday 16th September with Dr Tate. Will report. I do feel I have got a bit more breathless but that may be due to this chronic summer and the fact that we have been able to do much less in the garden. I have also been having a few upper chest twinges which I must have checked. God, how I hate this and keeping a little quiet for the family. (They never read this rubbish!) Check up went ok. The respiratory tests showed no deterioration and the on-going blood tests were fine. They seemed ok with the chest "twinges" but they are there and do worry me a bit. Still, given it cannot get better, I have to be happy with things so far. Just wish I did not get so b----y breathless on the most pathetically small efforts!!
Chichester, St. Richards, 14th June, 2008 A volunteer patient for the CMEC (Chichester Medical Examination Centre) for the morning. This is the exam for Doctors moving up the ladder and they need patients , with real problems, to be examined in front of rather tough Examiners. I did it last year too. It can be a bit boring but it is a very small way to repay the time and effort given to oneself by the medical profession. I say boring but, my word, are the Examiners tough on the young Doctors! I lie on the bed and cringe sometimes when they either get it somewhat wrong or muddled or, even worse, almost dry up - you cannot help them. I have even wriggled my so called "clubbed" nails to help some of them but that does not work. My nicotine patch, still used at the lowest 7 mg after over a year - a placibo I think now - throws most of them. Still, a soft examination is worth nothing. Today, an exceedingly bright Indian girl, I think, got it almost all right but forgot the overall term "Idiopathic"; she came up with at least six reasons for my IPF! Trouble is, once you have heard them, if the half senile brain can recall them all, one thinks one has all of them and I shall spend the next 7 days on the net researching - only joking. My thanks to Doctor Dewhurst, and his team, for their courtesy and good luck in all they do. As for St. Richard's losing its A&E - bah, Humbug!!!! What the hell is going on with the UK today (The apostrophe debate may have a field day above but I think I have got it right)
Hospital visit 27th May, 2008 - Latest changes. Will have to report the odd twinge in the chest/high stomach area, some recurring headaches lately and sweating in bed at night, a lot.
May 2008 So how do I feel after just over one year since the collapse? Better than at the time of collapse, obviously, but not as good as I felt before the collapse would be an honest appraisal. I used to get a bit breathless before April 2007 and put that down to the dreaded weed. These days, however, the mildest effort causes me to huff and puff copiously. I can do much less than I used to and hills terrify me. I find this so very frustrating. That being said, when I am sedentary, or at least taking things easily, I feel pretty ok. I do not need the oxygen provided at present but do have a whiff of it at night in bed. Despite the weight gain, I do look much better than I used to, paradoxically, and it is a bit embarrassing when I meet people and they say how well I look. They should  watch my darling wife laugh when I get undressed at night! I hate being well over 15 stone. When really ill, I looked like ET and worried the other way! Then, the combination of steroids and no smoking have pushed me up to just over 15 stone in the year and it isn't me and I do not like it. I even have to wear braces now on occasions. The weather has not helped either but I am hoping the summer makes me a bit more active and my metabolism settles down. (Just saw someone of 73 stone on TV so perhaps I should worry less!) I have noticed few other side effects in reality. Perhaps more headaches, the odd chest twinge and a very odd, itchy and tingling scalp which drives me mad occasionally, particularly at night. On the positive side, my head hair, contrary to what they say steroids normally do, has grown thicker and brings admiring comments from the family.
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