Had my third appointment today at Ambulatory Care Unit. Went to the the first floor and into the unit ward to see it full of ladies in beds? I asked where is the Ambulatory Care unit ? To be given the name of the ward and how to get there. Well it seemed an age before I got to the named ward to look in and the place looked empty? Tried the door and it did not want to move so looked for someone to help me. Saw another room that looked like it had some life in there and asked to be told they are not part of the hospital but will ring though and ask for me. I was puffing hard by all the walking I had done so far so I think they felt sorry for me The Reception called the ward and got an answer so I went back and it was filled with 4 nurses and the door opened? Nice smile and named asked at the desk and told to sit further down the ward and wait. There were 2 men next to me who all said morning and they asked why I was there to find that they had both got clots on their lungs.
Called though to the Doctor who started to go though all the data she had and I explained that I have not been better at all and my legs have swollen badly since upping my diliazem to 240. Then to explain my GP has dropped me back to 120 as he is not happy with the swelling which is a side affect of the drug. Now I was expecting "He should not of done that!" to say I would of said the Sotalol was the best for your heart conditions but if the Lung specialist has said it must be the Dilitzem for the lung medicine to be absorbed, I think we should be looking at what is the key factor to your SOB Is the AF or PH the factor or is it the RLD and fibrosis and Paralysed Diaphragm or a combination of both?
She told me that I need to see another Heart specialist that knows more about the condition combinations I have. When she asked why I was not put into PR I explained they deemed me exercise intolerant and cancelled it. She then went on to explain that we have to find what is causing you the problem of the SOB. Is it you need conditioning (Overweight) Is it the Heart or Lung so I would like you to do a fixed Cycle Test. But before we do that I want the cardiologist to make sure you are on medicine that will control your heart? I do not always know I am in AF even when it shows on the ECG as a right wobble?
She went on to ask if I did have the Pace and Ablate to tell her that once they found PH it was cancelled. She said that sort of makes sense? I just have to wait for the cardiologist to sort my tablets out and then do the Tour de Midlands on the fixed cycle, I hope the seat is comfy
Be Well
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Offcut
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And off you go again Offcut - round and round in circles, thank goodness for the bike as all that walking was bit much wasn't it. Everyone needs to exercise but SOB plus other things can make that difficult.
I do wish you well and hope you get some definitive answers or maybe you will be seeing someone else - does anybody know what is actually going on? Good luck to you and take care. xxxxx
I did feel like there was a plan of action. But it is just the time it will take to get it sorted? The only confirmed thing she said was "my lungs will not improve sorry"
What a mess,have u ever thought of going private,I seem to wonder why my breathing is so bad,never we anybody to check me out or anything ,I'm fed up ,I may pay to get it over with, all we need is the correct meds to get on with our life ,but when you get docs and nurses not knowing what's going on,it gets messy.
All my spare money has gone on a holiday. so private is out. My problem is which doctor do I see lung or heart or both that then costs me twice as much?
A lung specialists. I'm thinking of it as health is more inportant than money ,you need a good holiday, where there's a will there's a way!! I know you are searching for a better quality of life like a lot of us are. Take care.x
Well on the positive side the consultant was very thorough. Take a cushion just in case that seat is hard! Happy bank holiday xxx
Well Offcut I am not going to crack any jokes, the bike seats are not too hard but they are difficult to get on and off. Good luck with sorting your bundle of health issues. It is difficult to get a happy medium for exercise when you have several illnesses, understand as I have three that effect my exercise capability. Surprised no one offers swimming as an exercise option, even aqua exercise is light enough for most illness and it exercises the lungs, water supports the joints but not sure if it is safe for heart problems. Anyway before I bore you too much, have a good bank holiday and hope they soon sort out what exercise is good for you and get you on the way to maximum health capacity x
The Diaphragm Paralysis stops the swimming. The action of swimming stops me breathing so swimming is a no no for me I did like swimming too. Until I get the legs sorted I am not going anywhere to far fast.
Understand what you mean Offcut, have similar problems with exercise myself but can manage certain ones for now at slow pace. Think you need seated ones for the forseeable future, just to stop everything grinding to a halt wasn't thinking of swimming for you personally but it might benefit others with varied mobility issues and special supervised classes would be great just like PR. Have a good day got to go I have a leak in my Kitchen ceiling so will need an emergency plumber, roofs fine must be the bathroom pipes fortunately I have a plumbing insurance. Enjoy your weekend
Hi Offcut, No joy with the leak, I am not impressed no one can come out till tomorrow and they will ring when they are on their way. Not good enough so I have made a complaint via email to the insurance company. I won't be renewing this policy I can assure you. If I did not have insurance I could have got a plumber within the hour for cash. This is the crazy world we live in these days. Glad it is not a major leak and fortunately it is over the sink in the kitchen. Hope he knows how to take roof tiles off to get at the pipes cause hes not coming to do a simple change a washer job Let you know what happens.
If you can put the money away for each emergency you will most of the time get a better chance of success it is just being that good with the money? I was asked to take out cover for my Washing machine which meant I would of been able to buy another in 18 months with a 12 month guarantee. Most of my washing machines average 6 years so it is a no brainer.
I have been paying insurance on my washing machine for eight years now without a call out, the only time they have been out was initially because the kitchen fitters put it in wrong. As you say no brainer. I'm paying and getting no service. The TV is the same six years and no call out, the boiler too. And now it seems the plumbing one is the same. Good news the leak seems to have stopped for now, maybe it wasn't the plumbing after all but what do you do when waters dripping through the ceiling call a plumber. Bathroom floor is bone dry so it is not from there. No bowls have overflowed it's a mystery gremlins loose in the house now
Plumber has been, he thinks it is an outlet pipe, if happens again need to take a piece of kitchen ceiling out to find the cause.. Then have it replastered. £108 for half hours tracing, that's why we have to think first before calling out skilled workmen. He thinks it is the pressure of the water flowing out of the bath so some is escaping the wrong way. Like you say mind of it's own this water.
This might be helpful to you OC. Its me all set for lift off on a cardio pulmonary exercise test. plus.google.com/10152331535...
I was asked to pedal at 60 pedal revolutions per minute for as long as I can. They would stop me if they saw anything on the screens they didn't like.
The first 3 minutes seemed easy but then the breathlessness started to kick in, they wanted me to push it to the limits so they could test me on full throttle and believe me by the time I got to 7 minutes I was on Maximum gasping and had to stop.
An anesthetist had to be present during the test and would stop me if he saw anything he didn't like on the screen he was watching, thankfully he saw nothing apart from my low oxygen levels which dropped to 70, the lowest he had seen.
Be prepared for a few minutes of torture OC but its soon over and by the way, the seat is quite comfortable.
Nice to know the seat is comfy The last test I had was in PR and that was on the walking machine as soon as they upped the incline by one I tumbled down on the O2. I have dropped to 79 just going up my own stairs. If the handle bars are low it will affect my breathing so I think they will have to set it up like a chopper bike
I had a cardio walk test once were they wanted me to go up to 150 bpm but once they got me wired up and told me to rest as it was a little high. They told me to go to the machine and they will start it, by the time I had got to it I was 157 bpm! They cancelled it there and then.
They have all points covered there don't they. My only concern is once I strip off they will want to put me back into the sea
All sounds like a bit of a palaver actually...hope the bike test goes well enough.
I feel that as I have multiple conditions they are looking at each one rather than as a whole. They have all said that they do not see me improving but at least before it did seem under some sort of control?
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The Reception called the ward and got an answer so I went back and it was filled with 4 nurses and the door opened? Nice smile and named asked at the desk and told to sit further down the ward and wait. There were 2 men next to me who all said morning and they asked why I was there to find that they had both got clots on their lungs.
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