Doing the rounds of doctors again.

[Ozchick]

Early last month I went to Japan and met my daughter who's living over there. As we set off I was getting quite short of breath and my daughter (who is a doctor) started quizzing me as to why I was short of breath. I did try to brush it off-saying I was old and unfit but she kept persisting and told me to see a doctor as soon as I got off the plane! To appease her I said I would and it turns out my Mitral valve regurgitation has gotten worse and CT Angio shows slight Emphysema. Cardio is trying to rule out lung disease, as he thinks it's rare but not unknown in non smokers.

Having TOE tomorrow morning to confirm the MVR severity, seeing Lung Specialist on Monday and then keep Haem and Rheumy in the loop over the next few weeks.

Has anyone on here had a MV replacement/repair? Cardio was talking about open heart surgery for this which doesn't sound too pleasant! I'm building up a huge team of various 'ologists'and can almost convince myself I might be sick!! The other symptom along with all this is fatigue-I'm finding I almost need a daily nap to keep myself going and certainly something I haven't had to do in the past.

It's great getting old 😀!!!! BTW the trip to Japan was lovely.👍

[lupus-support1 Administrator]

Wishing you a complete recovery.

With good wishes,

Ros

[HollyHeski Administrator]

Wishing you a very speedy recovery - hope all goes well xx

[GinaD]

I too have MVP and have been told surgery may be in my future. I hope all goes well and .i will certainly follow your journey while hoping for the best for you. 🫰

[Ozchick in reply to GinaD]

Thank you!

[KellyInTexas Administrator]

no experience with this personally, Oz chic.

Sorry to hear you will have another, “oligist” added to your repertoire.

Welcome home, ( Japan! What a dram to visit!) , and despite your trip’s difficulty, I’m glad the problem has been found now.

Daughters are very good at keeping us well.

[GinaD]

Any updates Ozchick?

[Ozchick in reply to GinaD]

Lung Dr tomorrow, TOE done but Cardio away for 4 weeks🥴 so no results- all moving at snails pace for me.

[GinaD]

Sorry you are surrounded by snails! Stay strong!

[Ozchick in reply to GinaD]

Lung function test OK. He thinks I may have mild asthma and prescribed a steroid inhaler to try out. He feels the breathlessness is due to MVR and the emphysema on the scan was negligible- and not a great contributor.

[GinaD]

A wierd suggestion for asthma: I had asthma with occasional needs to pull out the inhaler. Then, on a yearly apt with my doc some30 years ago, he said " Your inhaler script has expired. In fact, according to my records it expired months ago. Are you still using it? " " you know," I replied, " I haven't needed it for ....nearly a year now. I don't know why, but I'm glad I don't need it." He grabbed a piece of paper and scribbled on it as he said, "Are you drinking that espresso-based coffee they now offer at Taylor Books doentown?" " Yes. Because I drive my daughter to her special ed classes I go there 3 times a week, drink their coffee and read." He showed me the paper he had scribbled on. " Here is the diagram of the active ingrediant in your inhaler, and here is the diagram of xanthine, " ( I think thats what he said,)" which is in coffee beans but only comes out with the high pressure used to make espresso. Can you see that they are exactly alike? Shall I write you a perscription to drink an espresso based beverage 2-3 times a week?" " No," I responded. " I think I can manage that myself." And added good news: with my a fib and MVP, I can not drink regular coffee. But decaf coffee retains that bronchodilator property. I have had 2very mild cases of covid and. IMO, it was the decaf espresso that kept my breathing normal. Don't know if this long post will help, but I thought I'd share my post asthma experience.

[Ozchick in reply to GinaD]

I usually have a daily coffee - but not decaf, Maybe I could give it a try for a few weeks and see if it makes a difference! With this crazy syndrome who knows what will or won't work.

[GinaD]

Espresso. A " kid" who is1year younger than my oldest child, has opened a local coffee shop 2 miles from me. And his shop also hosts a used book store! Though I still must confront my age every time I see him as a full adult instead of the kid who used to play with my daughter!

[Bloodredroses]

I have found APS means I need naps.