I forgot the bubbles

Yesterdays visit to the hospital didn’t go quite as I expected, I thought that it would be just like all the rest, speak to the doctor, have tests agreed on and then home to wait for the next appointments to come around, wrong! The hospital was ready for me and we had only been there about 10 minutes when not the doctor, but one so the nurses came to seen me and sent Adam and I round to x-ray, giving us the information that I was already booked to go through for lung function tests, both of which I had expected to be done another day. Both Adam and I were relieved as this meant that there would be less running around and less requirement for that horrid stair climber, no that hadn’t been any better than the ones before.

The x-ray was over in seconds as they always are, so it was back on with my clothes and back across the other side of the hospital where the clinic was being held, it is a really great help having Adam working at the same hospital him knows where to go, so none of that getting lost that I still remember as a feature on most hospital trips. Once back at the clinic we were within seconds called through to see the doctor prior to my lung function tests, another one of the new advantages over days gone by, the x-ray was up on his computer screen, which of course Adam and I stared at trying to work out, while he went out of the room for a minute and then returned. Straight away he confirmed what I actually thought that x-ray was fine, I had been checking some on line the day before and it looked to me to be normal, not being a doctor though I was still relieved when he said it was fine. We sat and talked for about 10 minutes going over the problems that I was having and how they felt and so on, I told him about the the cluster of bruises and the strange red line around my chest, which he said is nothing to worry about, I have had a small thrombosis which had come up to my skin surface and because of where it is, apparently the line is a normal thing to appear along with lower rib line as that is a vein that follows that path.

Adam went and sat back in the waiting area while I had my lung function checked, I was surprised that it all took about half an hour. I was sat in front of a mechanism that looked like a divers mouth piece connected to a flexible arm. For most of the tests I had to lock my mouth on to the mouth piece being sure to hold my lips tightly on to the rubber so that there was a good seal, as I couldn’t actually feel the left side of my mouth this was an interesting process. The first couple of tests were exactly what I was expecting they were a version of the peak flow test I mentioned the other day, but one was done the opposite way by breathing in. Everything had to be done four times, with a short rest in between each attempt to get it right and to give average readings, as soon as those two were completed they then spread some cream onto my right earlobe, I know that sounds really strange, I for one couldn’t think of any reason at all, as to what my earlobe had to do with breathing. The creams actions was explained to me but still isn’t clicking in as how it actually works, what they were after is arterial blood. Arteries run deeper in the body than veins do and accessing them is a painful process for anyone. They have to dig deep into either your wrist or groin and somehow this cream draws arterial blood to the surface of your earlobe, but it takes a little while to work.

Still sat at the breathing apparatus I still had two more tests to do, one was clearly to see the volume of air in my lungs as I had to breath in deeply and let it out all the way, again four times and then at last the final one. The air flow through the machine was reduced to a pin hole, this was to measure the pressure I could empty and then fill my lungs, trying to blow out as hard as I could of course popped my ears, like being in an aircraft, but I did as asked and I thought it was going well until they popped the monitor on to my figure to measure my oxygen saturation, the readings were all over the place. At it’s lowest it was just 84% and it’s highest 94%, I knew straight away that wasn’t really a good thing, normal is 97% and above, but it did answer one question that I had over my endoscopes I had. On both I remember the nurse constantly taking the clip on and off my figure, I was on oxygen for them to be able to do the endoscopy, but I now guess it was low then too even with the oxygen they were supplying. The final test yesterday was taking the blood from my earlobe, again my body didn’t at first want to let them do what they wanted, it took several deep stabs before it gave up my blood and let then have enough to do their final test, then it was back to Adam in the waiting room. I was still running through all the test that they had done and trying my armature doctors act on working out what they had found and what each test told them, when the doctor reappeared and called us through to see him.

He was straight to the point something that I appreciate and told us that my guess from last week was correct, I have Chronic obstructive pulmonary disease (COPD) and emphysema, together that would be bad enough but there is clear signs that my MS is attacking my lungs quite badly. The mechanical process of breathing requires both you diaphragm and you rib cage to pull n and get rid of air, they aren’t really doing that as they should. I almost shouted when he told me about my diagram as I had told all the nurses who were visiting me and my GP, right back at the beginning that there was something wrong with my diaphragm, and here is the proof from the 10th April last year. If anyone had listened I wouldn’t have been put through the endoscopes, as my problem was and still is the pressure band that causes real discomfort, along with incontinence, if they had listened this could and should have been found back then, but that doesn’t really matter now.

What all this means is that my lungs aren’t working and will work less and less into the future. The COPD and emphysema have reduced my lung capability to 80% and my MS also to about 80%, put together and my lungs are functioning at about 60% over all. So what happens now if I am honest, I don’t really know, I have two very different and difficult lines of thought to bring together. If I continue to smoke I could live for another 10yrs, but within 2 years smoking or not I will probably need oxygen at home, something they won’t be able to give me because I smoke. If I stop smoking well that would improve and possibly eventually remove the COPD, but my MS would continue to do it’s damage. He didn’t try to lecture me and only really went into full details because Adam kept asking questions that I probably wouldn’t have asked. The doctor did repeatably say that he would fully understand if I continued smoking, as as he put it I have been dealt a “shitty hand in life” and he wasn’t going to push me into anything. Right now I just don’t know, I know that many will not understand that at all, but I need to get this into my head and start taking the new inhalers and medication he has prescribed, which I should have with me in the next could of days.

I still have more to write about yesterday but what I am going to do is stop here and once I have everything else done I will start writing what will form tomorrows post. I am only half way through but I need to break at this point for many reasons, but mainly I’m getting exhausted, so until tomorrow.

5 thoughts on “I forgot the bubbles

  1. It sounds like you at least got a good doc who confirmed what you already suspected. At least now you know and you can stop worrying about what it might be and get your mind around what you have.
    Only you will know whether and at what point you want to give up smoking. I think you will know when that time comes.
    I feel honoured to share your journey, painful as it is. You have done and continue to help so many others with your blog. I have you to thank for helping me through my own struggle with chronic health problems. I don’t know what I would have done without your wise, calm words.

    Wishing you all the very best. Hugs from me xxx

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  2. The doc was right about your deal in life. There’s no accounting for that,sadly. You cope in a marvellous way. Lungs affected by MS is bad enough but adding the smoking is making it harder for your poor lungs. So I send you lots of good wishes, a virtual hug and hope you are able to find the strength and courage to consider giving up smoking. This is good advice from someone who has trouble giving up choc chip cookies and chocolate. xx

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  3. I am so happy they have finally diagnosed you properly and now that you know what is wrong you can figure things out in your head and do what you feel is right. Take care chuck HUGS

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  4. Pingback: Another door opens | Two Rooms Plus Utilities

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