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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Small comfort, Offcut, but I have the feeling that complex people like you stretch the brains of your medics and make them think and have the occasional 'eureka' moment.
And I can see now why the Aussie Flying Doctor radio system used to be powered by bicycles.
It does seem like there is a plan now. one of the issues is the PH is a classed as a lung problem but the tachi and AF are the heart. The last time they met the lung doc won but I have not felt well since
It's perhaps a question of balance and ultimately what suits you best must surely be the goal even though the individual specialists may not be getting their ideal way forward for your treatment. They can suggest things to try but it's surely for you to select what, out of their range of options, is going to be the most successful. Good luck!
Fingers crossed ego's aside. I understand the reasoning behind the change as it was explained to me by the specialist by a PowerPoint presentation and it made sense, but I have not reacted well to the tablets and that has got be taken into account. My old regime was not perfect but I felt a lot better than I do now.
Why tour of midlands? And i hope the saddles comfy for you.
I had a similar thing at hospital when i went for tilt table test - i was asked to sit in waiting area where there were some other ladies and gents then a nurse came out and started a seated exercise class!
Why tour de Midlands I live in the midlands. One of problems is I have many problems and some simple exercises cause me problems. Diaphragm Paralysis is a great problem when it comes to bending over as I stop breathing the same with swimming. I use slip on shoes and a long shoe horn, if I do it the normal way I have to come up for air and put them on in stages laces take to much time now.
I used to be a very fit person and taught Martial arts for 17 years as a third Dan. just memories now
That is complete mystery The only thing that showed there was a problem was swimming years before diagnosis. The doctors in ICU were not 100% sure it was because of the infection being so severe. It could of been the drains I had in me nicked a nerve. I have so many scars were tubes were inserted for all sorts of reasons. I even had tubes stitched to my body to stop them moving. Along with arterial line boxes stitched to both arms over the 32 days I was in ICU.
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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.
Feeling Really down
Treating PVCS on a virtual ward 
