He said to come off Tiotropium but if things had not improved within two days, to take the Erythromycin he was giving me. Late Saturday evening severe breathlessness started. It was a toss up from calling for an ambulance or trying the antibiotics. I choose the antibiotics, which did have some effect, but it was not a quick fix. A cough started as well.
On Thursday I went back and saw another GP after some discussion about how some drugs worked or did not. One of my cases is that Paracetamol has never worked for me and so I use Co-dydramol. I have found in the recent years that dis-solvable Paracetamol does work provided I've got time and the place to use it. After this chat it was decided to give me Erythromycin and Amoxicillin as liquids and dis-solvable Prednisolone. It maybe that I am not getting (and never have had) the full benefit of some of the drugs that I take. Previously they might have been slow to work but in the end did, but now with the Ileostmy it passes out quickly and only gets partially absorbed. It is a new look on things and will have to see how this progresses.
The breathing has improved a little and the cough is not as bad. A the moment I still do not hold much hope for working early in the next week. The Spirometry test was OK by the way.
]]>He also put me back on Tiotropium, this cause me serious breathing problems when I last tried it. Previously it was a powder and I was taking other drugs which I discovered by accident, were also causing breathing problems. The accident was forgetting to pick up the prescription and totally running out of Flecainide. This was something given to control irregular heartbeat which had been fixed by an operation but the heart people did not want me to come off of it. I had been on it for several years even though I did not think that it was doing any good, but of course the doctor is always right (or supposed to be)
The Tiotropium this time is different, it is an aerosol inhaler. I suppose this has an advantage in that there is no powder carrier in it's make up. So far, about three days, I have had no breathing problems.
The other problem with the cough is that it is causing chest and stomach pains. As a consequence I am taking a lot of pain killers as well. I had a bit of a rest from them but have started again this morning.
I will have to see how this goes now, I have got appointments for BP test (but as they were so late yesterday I walked out), and a spirometry test.
]]>On Thursday (11/12/08) evening I started a chest infection and saw the GP on Friday lunchtime. I was given some antibiotics and told to go to A&E if it got any worse. I called the ambulance on Saturday afternoon and taken straight there. It was causing me serious breathing problems. As usual things did not show anything, listening to the chest showed that it was clear, as did the X-Ray. But I was put on IV and oral antibiotics, a nebuliser and oxygen. I think the tests (mainly blood) showed that there was an infection, these seem to have gone well, I shall be out later on today.
Earlier in the year I had a follow up (from my operation) CT scan of my heart. Every subsequent appointment I went too did not refer to this but a previous abdominal one. Eventually in August, I got a letter saying that my heart consultant had emigrated that day to Australia and they would be appointing someone else. A couple of days later I got another letter saying that there had been a 'technical fault' on the CT scan and none of the heart veins could be seen. Eventually I saw a new consultant and told him that the CT scan must be repeated as soon as possible. This was done on a Tuesday evening and by Thursday I went to the GP with serious bruising, off to St. Peters A&E and another overnight stay in hospital. They were worried that femoral artery had been nicked but an ultrasound scan showed that it was OK and it was just serious bruising. This scan did show that the veins were all OK and that there had been no narrowing due to scaring.
I have also had appointments with the lung clinic, again follow ups from the heart OP due to the breathing problems I had had after it. They put me on a drug called Tiotropium. All this managed to do was to make my breathing worse. Finally they diagnosed COPD (Chronic Obstructive Pulmonary Disorder) and been signed off by them. I have also found that another drug Flecainide may have been causing some bad symptoms, so I stopped taking those.
I later discussed this with the GP, who said I must talk to heart people about this drug. Two days later I got a letter from the heart people, saying as my breathing had improved they were signing me off.
So here I now sit in the discharge lounge waiting for drugs then I can go home. My breathing is still bad but slightly better. I am going out with two different types of antibiotics a liquid form of Amoxicillian and Clarithromycin also some steroids Prednisolone. The pharmacist has been very good checking on the types of drug I have been given. Spotting that I should have not had the coated type of Prednisolone but the plain sort so I will be starting a new course from the beginning. The Amoxicillian I had on the ward was intravenous so I am just continuing with the liquid type (not the usual capsules)
]]>With the first few hours the pads were starting to itch. This hasn't happened before. After the forty eight hours were up, when the pads were removed, there were red marks where the plasters were. This stopped where the pads were, only where the plasters were.
If I have one fitted again I will have to make sure the either no plasters are applies or a type that does not cause a reaction.
It is too soon to have any results from it yet.
]]>As an aside to this the Heart man had also ordered a CT scan when I was last in hospital. This was a special one called a 64 bit CT scan. There was only two places that could be done one was at the Royal Surrey in Guildford and the other at a private clinic in Weybridge. It was booked at Guildford.
It was due on a Monday morning and late on Friday I was rung to say that the specialist had gone sick and it could not go ahead, a new appointment would be booked. After a week and a half I had not heard from them and so chased the Heart man's secretary. It took her over a week and still did could not find out what was going on from the CT dept. but later managed to get an answer from a different contact there. Result was they were not doing any scans at that moment.
In the end, an appointment was booked at the Weybridge clinic. This happened about three weeks ago, the doctor even found a vein that worked, on top of my foot. It worked so well that lots of blood ended up on the floor after it had gone in and they were trying to put the plug in and also when they removed it after the job had been done.
I had a follow up Heart appointment last Wednesday. Unfortunately the scan results had not reached him. All he could do was to apologise and say that he did notr kn ow the answer to my breathlessness.
An hour before that appointment I had made one to see the Stoma Nurse as I had a sore around the stoma that had developed after a long drive to Germany a two weeks before. I did say to her that I had driven 1000 miles just to make this appointment. This was true as I had just driven down to Italy and back.
There was no real solution to the sore but did make the bag cutout slightly larger. She gave me a different sort of paste to help with sealing with does go set as hard and does not sting. I was also to stop using the silver nitrate to stop the bleeding.
The sore has improved a bit but not as fast as I was expecting. I am still getting leaks around it as the sore which is part of the problem because as it is open it produces liquid which stops the sealing. A bit of a losing battle until it heals completely.
]]>We had a chat about how things were going and discussed the possible reversal of the stoma, when I retire. I got the usual finger up the bum.
Everything seems to be ok and I left with a blood form and told to book a CT scan.
]]>So it looks like I am well on the way to be well and fit again.
]]>So I am now getting very keen on my new found energy levels. I’m looking forward to getting back to work now. Tomorrow I am off to the hospital for the anticoagulation clinic. I have phoned them to say that I have been through this and only need a blood test for my INR levels. I have been told that as I have had an ‘incident’, they need to review everything.
]]>Mum was a bit concerned that I would ring her up and she would have to come and collect me. As it was she was very surprised that I was back so quickly.
I got only slightly puffed but otherwise I felt really good.
]]>Now this turned out to be the 'V' part of the VQ scan. I had the same girl and mentioned that I had got mixed up, and she said the the Angiogram people had rung her just to check, before doing the Angiogram. The 'V' stands for ventilation, this part of the test I had to breath a medical gas with some radioactive isotope added to it for five minutes. This is where it was very confusing as I had been told this part of the test had to be done by a specialist coming from Guildford!, but there you go.
After the breathing I went into the same room as before and had very similar pictures taken with the same machine.
On a good note I did walk into the hospital from the bottom of the hill and did not have to much of breathing problem, so things are looking up. I have also just popped into the surgery with a prescription. I thought I had everything when I left the hospital but these I had forgotten that I had run out of.
]]>So the plan now is to have the special CT scan (to be done at the Royal Surrey) in the next couple of weeks, also a full lung function test again. See the chest man in OP in 4 weeks and to bring the heart appointment for from the original 12 weeks to 6 weeks.
I should be at home later this afternoon.
]]>I have insisted on seeing the chest man before leaving but they have argued that I had a lung function test a month ago and things will not have changed. Well something has and if it’s not the heart then maybe it’s the lungs. Apparently the CT scan I had done two days ago covered that and it didn’t show a problem.
I am still insisting on seeing a chest person before I go.
]]>I first had a common one but can’t remember the name (I think Diazipan), then that was topped up to double the dose. Still in pain, so I then got Morphine, then that was doubled up, as well as with something else. If only they had listened and given it in the first place maybe I wouldn’t have been as tense and maybe not needed extra.
Anyway as a result I have some cholesterol build up but none of the arteries were blocked. They talked of treating this with drugs; I assume they mean statins (I’m a little dubious of these as I have heard so many bad stories of them). There appears to be no reason for the high BP around the lungs. Meaning, that they still don’t have an answer to my breathlessness.
I will hear tomorrow all of this and maybe pick up a bit more as I was under the influence today.
]]>“A VQ scan (ventilation perfusion scan) is a type of radionucleid scan which uses various radio-isotopes.”
Having written the first few lines, a porter arrived to whisk me away, to have the scan. The technician said that they would only be doing the ‘Q’ (perfusion) part of the scan, which is the perfusion part. This involved a small injection and then sitting in front of a scanner for a minute or so and then being turned to a different position. This was repeated four times. Then back to the ward.
I saw the doctor who was surprised that it had been done so quickly. Apparently the ‘V’ (Ventilation) part can only be done by a specialist (I assume a doctor), who is coming from The Royal Surrey Hospital this afternoon.
Read more at http://gmtv.medicdirect.co.uk/tests/default.asp?step=4&pid=385
I've also seen the the vampire girls today for another INR test.
]]>My Mother rang to say that she had broken down and that someone was giving her a lift. The nurse she spoke to told her I had gone home. Not Me! She made a mistake; it was the chap in the bed next to me. I have phoned home to clear it all up.
Later ….
She has got a lift in with the next door neighbour, so that was an unexpected visit.
]]>Unusually all of this was passed on by the doctor to the consultant. He has agreed to do the treadmill test, he also wants a CT scan done even if it is a compromise on what the first consultant wanted and the second didn’t. I asked if it was counter productive taking something that was meant to stop the irregular heart beat, after hopefully fixing it. He listened to the point about the drug (Flecinide) and said that he didn’t want to change that as it would be changing to many variables.
He was also concerned about the slightly high blood pressure and talked about a stent to the other doctors as a possible solution asking for some other tests. He also asked for several blood tests (and the vampire girls have just turned and taken them). He was also concerned about the slightly high blood pressure and talked about a stent to the other doctors as a possible solution asking for some other tests. He also asked for several blood tests (and the vampire girls have just turned and taken them). The Warfarin dose was increased last night to 6.0 but yesterday they didn’t take any blood.
I just got taken away for a scan.
I was surprised that it was a CT scan and it was done so quickly, I thought that it might have been the treadmill test. That will probably happen later on.
]]>I woke at 5 or 6 with a headache once again. Although I have had a couple of clear days, the nights of those days have still produced headache / migraine.
The doctors don’t come round at the weekend but there is always one on duty. Tomorrow, hopefully I will see lots of them, with plenty of answers. I will also ask if it is worthwhile having a treadmill test which will show if my heart is performing as it should be under stress. It may give an insight into the breathlessness as well.
My INR levels are now what they want them to be of 2.0 and I am now on my usual dose of Warfarin of 5.5, I haven’t had a blood test yet today. The vampire girls have been a gone so maybe I will avoid the needles today
]]>It has been considered again doing the CT but from the blood tests, it may only prove that it is not the pulmonary veins. He was going to ask for a lung function test but then notes that one had been done recently.
My suggestion is that they also involve the Professor (breath man) in the discussions. This would be better than being signed out and then being bounced back and forth between chest and heart clinics, not getting anywhere.
In myself I am feeling a little better but still feeling breathless after my shower. At rest there is not a problem. I had no headaches yesterday and I thought that may be on the mend, but got woken up about three this morning with a blinder.
]]>I also saw the Stoma Nurse this afternoon and she, hopefully has sorted out a small problem I've had.
]]>Now they want to get the INR level correct using the Warfarin and the “Fragmin” injections. I put that in quotes because that is not used in St. Peters but something else has been substituted. I've also been put on some water tablets, which have an almost insant effect.
I told them I would stay in until it was sorted because with this breathlessness, there is no way that I can resume work. I was then asked again when it started and what it was like before the OP. things were left at that point.
]]>Today, hopefully I will have a chest CT scan done but it could be that they can't do that sort (the particular type wanted) here and I will be taken elsewhere for that. I also have to have a blood oxygen test repeated but this time after I have done a bit of walking and become breathless.
]]>She tried to contact the Medical Assessment Unit at St. Peters Hospital, on the phone but could get no answer. She then wrote a letter and along with my release notes from St. Georges, faxed them to the unit, and gave me the letter and release notes. I was told to go to the unit and they should be expecting me, but get someone else to drive in case I was kept in.
I was, as it turned out, eventually ending up on Birch Ward, the Cardiac Unit. Blood has been taken several times, a chest X-ray and an ultrasound scan of my heart. I am now waiting for a chest CT scan. So far I have been told that it may be a case of high blood pressure in the veins of the lungs but this will have to be discussed with some other people first.
As to the answers to the problem, none have been given. I hope that something is sorted out soon.
]]>I saw the registrar before going down the next day and he told me it was only one procedure!! What are these people on especially as they are going into the middle of my heart with hot sharp things! I got down to theatre at about 9am and was pushed in my bed to outside the theatre and then asked to walk in and climb on the table. This is the first time this has happened to me, it maybe an extra form of infection control.
Various people came in and introduced themselves, one saying that shortly she would be sticking patches all over me. Time passed and after 40 – 45 minutes I was told that the machine that had the CT scan of my heart would not talk to all the other machines. They hoped that it would otherwise they would use a different technology but still do the OP. They decided to send me back to the ward and do someone else. Eventually I went back down at about 2pm or so. The anaesthetist said that they had managed to get things working about 15 minutes after I had left. The Op lasted 2 – 2½ hours and I was back on the ward at about 5:45.
Everything has gone OK; I had a look at the charts before I left yesterday. The one done before the OP showed my pulse giving two beats and then a pause, then two more beats and so on. After the OP and the following day they both showed a completely regular pulse. So one thing has been achieved by it.
After the OP I woke with a Migraine (and I have had a headache ever since) but they did not seem too worried about that. Yesterday evening my neck was aching on both sides, and still was this morning. I had a quick visit to the GP this morning to chat about these things and she thought that they may have been caused by a reaction to the aesthetic or by the way I was manoeuvred whilst under its influence. Hopefully this should all pass. In the meantime I am taking it easy; I have to get an INR blood test tomorrow. If the level has stabilised I shall be able to come off the Fragmin and just continue with the Warfarin.
]]>So she showed me what to do on a rolled up bandage. Then I had two goes myself on the bandage. Difficult stuff, I did say that it would not be as easy as that, on myself. She said that it would be easier, as she had managed to blunt the needle on the sink, as she drew some water into it.
Today, I have injected myself with Fragmin, twice. What was all the fear about? There was a slight stinging after I had injected, for about five minutes. Nothing like when the hospital nurses do it, when injecting Heparin. Then there was a lot of pain and a great deal of bruising. It may be causes by rushing around and needing to get finished and move on.
When I go in, I will ask if I can do it myself, hopefully not having the same problems.
]]>I booked an appointment with the GP to find out about how to do these jabs; I don’t want to wait around for a district nurse to do them, twice a day.
As it was, the GP rang this evening and discussed exactly this. I now am going to cancel the GP’s appointment. He is giving a prescription for the Fragmin and the surgery nurse will show me how to inject myself.
]]>So I rang Jo, thinking they had an appointment for me, but no. She would be speaking to the surgeon next week and did I still want the OP done. Of course I did, was there any time I could not do, no, as long as I had a couple of days notice.
So that was it, nothing to panic about.
]]>I have been contact with the cardiac consultants’ secretary twice now. The first time was at the end of November (about six weeks after my appointment), I said that I hadn’t heard anything about my ablation and it was close to the end of the eight weeks waiting list I had been told about. She asked if I had had my scan yet, my reply was I had not heard anything from anyone. She phoned back about an hour later to say that someone from the scan dept Weybridge would ring me in the next two days. I got a call later that afternoon and had the scan the following day.
The second time was in mid December to ask again when I was having the OP, she asked if I had had the scan. I said I had it the following day and had rung and left a message for her to say that I’d had it done. This she remembered and said that she would have to chase up the results as they had come to her. She rang back a couple of hours later to say that she had contacted St. Georges and as paperwork had got lost, the date had been backdated. This meant that I would have it done by the end of January. It had to be done by then because of government guidelines all Ops had to be carried out within eighteen weeks (I think they loose there nectar points if they don’t).
So that’s it I’m still waiting for an appointment.
]]>I had to ask him his name to find out who he was as he didn't introduce himself. He explain several things and went on to tell me that he had pointed these out before. I had to correct him at this point saying that we had never met before. He checked back through my notes and apologised say that he had only written a letter to my GP.
He told me ablation and the risks. He then said we can leave it as it is and see how it went or we can do it if I felt that it was a problem (Derrr!). I pointed out the problems I currently have and that they are worse than they were and said it has to be done.
The waiting list is about two months and it will be done at St. Georges in Tooting. I have keep up the Warfarin and a few days before I will have to go onto injections of Heparin.
Now all there is, is the waiting.
]]>