Update

[bowler]

Hello.

Thought some of you may be interested in my update/heart problem.

I have seen Cardiologist again. I have a moderate to severe heart valve leak, plus angina, looks like I will have to have surgery, but before then I await some more tests, Coronary angiography, and a Transoesophageal echocardiogram [ what a mouthful ] sometimes I feel I have a box of frogs in my chest, will be glad to get it all sorted.

I'm getting lower back pain, not sure if this PMR or the heart problem,? ESR was 17 so not to bad, I have also been on statins now for a month and so far no problems. I was a bit worried about my kidney function which is down to 35 and creatinine 133. the Cardio didn't seem too concerned. I'm getting anxious about the tests which probably isn't doing my adrenals much good, and wonder if I need to up my steroid dose for the tests ? I'm hoping that they will sedate me.

I had a letter from the Endcronologist, they will see me again in March and to continue to take 7 mgs of pred, but they couldn't explain my severe fatigue, no doubt it's my heart problem causing this, which they don't know about yet as I'm being treated at the West Suffolk hospital for this heart problem and all my other health issues are dealt with at Addenbrooks. I don't know if hospitals contact one another?

Best wishes to all

bowler x

[GOOD_GRIEF]

I'm not sure how it works in the UK, but here in the US, we have to take responsibily for getting all the parties to confer.

[bowler in reply to GOOD_GRIEF]

Most of my health issues are done within the same hospital Addenbrooks. so they would confer with other clinics, however because my Dr. wanted to fast track me [2 weeks wait ] I didn't have a choice, but was grateful to get an appointment in another hospital, I was told that it was quicker than my usual hospital in Addenbrooks Cambridge, as they were very busy in Cardiology. Most health issues over here are computerised so it's just a case of pressing a few buttons, but I don't think that always happens.

[SheffieldJane]

I would personally ensure that the hospitals both know about your conditions. I am not surprised that you feel anxious about the tests. I would want to be lightly sedated for the procedures. I would check that out in advance and ask about your Pred dose. A lot of us have the severe fatigue, it goes hand in hand with autoimmune diseases, it's not necessarily your heart Function, but I suppose everything contributes. Did you say that you had secondary Adrenal Function problems as well, in a previous post?

I hope you will be fine on the day, I sometimes feel resigned and calm when I actually go through the thing I have been stressing about. Good luck. Keep us posted. 🌷

[bowler in reply to SheffieldJane]

I saw the GP last week Wed. and he already had the info from the Cardiologist who I saw on the Mon. so it can be done, but I don't think the info was sent to Addenbrooks, maybe I could send e/mail to the Endo's clinic to inform them.

Yes I have secondary adrenal insufficiency and I assume I will be on Pred for the rest of my life. I hope I don't have to wait too long for the tests.

[PMRpro Ambassador]

"I don't know if hospitals contact one another?" - you'd hope wouldn't you! But I suspect they don't with the great NHS computer mess.

The TOE is a bit like an endoscopy and you can be sedated (in which case you'll be in the hospital for recovery a bit longer) but it can also be done with just the back of your throat numbed with spray. The angiography is another matter and that counts as invasive so I imagine the "operator" (for want of a better word) might well use a boost of steroid to cover you. How long must you wait?

However - I can't remember: is this a "I told you so..." moment after a GP claimed it was the pred?

[bowler in reply to PMRpro]

Don't know how long I have to wait, the Cardiologist I saw last week couldn't give me a date.

My GP found the murmur when I saw him re my chest discomfort/palps, breathlessness. The Cardiologist didn't seem to think it was the long term use of Pred. and said I probably had the leak for a couple of decades which has now got worse and showing symptoms

I'm surprised that no one else in the past has ever checked my heart, Rheumatology, Gastrologist , or the Endo. It was the Gastro Dr. who started the ball rolling with getting me to see the Endo. hence the findings of my insufficient adrenals. I's all so frustrating, and I seem to have been going round in circles. I feel that Rheumatology should have done an ACTH test long ago especially after being on Pred for 17 years.

I do have a brother who had a Mitral valve leak, which they repaired whilst he was undergoing a triple heart bypass, he was 60 and is doing OK 10 years on. Maybe it's hereditary ?

[Rosedail in reply to bowler]

My mother, who had PMR 20 years before my own (she recovered in 3-3.5 years) had open heart surgery in September in order to have a new aortic valve (cow) put in as well as a a septal myectomy (they shave a bit of the heart muscle where it has thickened near the vlave.) She is 77 and had all the tests you mentioned as well as a Cardiac MRI over a period of about 6 months. Her symptoms were dizziness upon standing, general tiredness and breathlessness that worsened over a period of months. We asked the surgeon about heredity and he said that yes, there may well be a genetic component to the valve issue. I asked my Rheumatologist about any relation to PMR or to long term prednisone use with valve issues or stenosis of the valve, and she said she was not aware of any link.

Keep on with the physicians, as you have done so far, and don't give up until you feel that you have a sound diagnosis and a good treatment plan. Be that "squeaky wheel"! My Mom consulted with over five different cardiologists and specialists at great expense and time, but she has no regrets. Every time she had a test, she would ask the physicians and technicians lots of questions. Rather than have the surgery at a relatively small hospital as her first cardiologist had recommended, she researched her options and went to a hospital and surgeon in Boston with a great deal of experience. (She found out that the first hospital only did a few septal myectomy's a year!) She also went with the hospital and surgeon that did the best job of gathering and reviewing all her medical records from her other physicians. She was very concerned about the fact that she had one kidney and made sure her surgeon knew this in advance. The surgery was indeed an ordeal, but she's doing great. My best to you!

[bowler in reply to Rosedail]

Thank you for your reply,

I have my transoesophageal echocardiogram next Wed. 14th Nov. so hopefully they will see what's going on with the valves, I do know it's my Mitral valve, and I also have angina. My brother had the same problem, however he had to have a triple heart by pass so they "fixed" the mitral valve then, so you can live with a leaky heart valve depending how bad it is, my brother is doing well 10 years on. I have been told that I have probably had the leak for several decades and it's just now giving me problems.

My Dr. fast tracked me and I was seen within 2 weeks, so I'm quite happy with the Cardiologist treatment with the NHS as once they new I had a problem things started to move, lets hope my leaky mitral valve isn't so bad.

I hope your mother continues to do well, I'm 73 and hope I have a few more years in front of me.

regards bowler

[MaryA_]

Keep us posted when you can. Thoughts n prayer for you!

[bowler in reply to MaryA_]

Thank you

[DorsetLady PMRGCAuk volunteer]

Good luck with all your procedures, and make sure they all know about all your issues. Don’t know about different hospital “talking” to each other, it’s difficult enough to get the different department in each hospital to do that sometimes! That’s why I started making notes when my hubby was in and out like a yo-yo.

[bowler in reply to DorsetLady]

I think I should contact the Endo clinic in Addenbrooks and put them in the picture, and I will probably chicken out and ask for sedation for the tests.

Thanks for you good wishes.

[DorsetLady PMRGCAuk volunteer in reply to bowler]

Hi again,

It’s not chickening out, it’s being sensible. If it make you feel more comfortable and less stressed then ask for sedation - the last thing the nurse/technician wants is a stressed patient.

[SheffieldJane in reply to bowler]

Supernatural stress needs a supernatural remedy. Sedation is self care. No chicken involved at all. Good luck!

[Jackoh]

Good to hear from you again Bowler and to hear of your progress or difficulties with it at times. I would certainly make sure everyone knows what everyone else is doing - I personally feel that you can't assume anything unfortunately. All the very best- keep us informed. X