Ejection Faction. Myeloma.

[Gooner1947]

I was diagnosed aortic stenosis and have seen cardiologist who said I'll need a coronary angiogram. Based on results of Echocardiogram, ecg and ct scan.I had to see my GP this morning re results of blood taken for kidney function. They were OK except for a trace of some protein linked to myeloma. Arrangements now being made for me to see haematologist to look into it.

Another thing to worry about now sadly.

Whilst with GP I asked her what my EF was and she said it was 64% which she said was good. I don't know how thst will affect the angiogram though. If a new valve will be needed etc. Had whole aorta ct scan last week and yesterday a Carotid Vascular Ultrasound.

[DodgyTickerMum]

So sorry to hear you’ve got a lot going on medically at the moment. I assume the proteins you refer to from your blood results are possibly Para Proteins? My Husband was also found to have these last year, after a routine blood test following a chest infection. A full body M.R.I was swiftly arranged - the results of which fortunately were ok and he was then diagnosed with a condition called M.G.U.S, which can also be linked to kidney issues. He now has 6 monthly blood tests to keep an eye on his levels and drinks a daily dose of apple cider vinegar, to try and keep the kidney stones at bay!

Hopefully you will only require monitoring too. Good luck with the Angiogram. Keep us all posted. Take care.

[Gooner1947 in reply to DodgyTickerMum]

Thank you for your reply. It was very helpful. I really really hope they don't ask me to take an MRI. I doubt I could handle it. The last time I tried was about 10 yrs ago and lasted just 20 secs! I'm so claustrophobic.

Hope if they want to investigate further there are other methods.

[DodgyTickerMum in reply to Gooner1947]

You sound just like my Husband! He also has a fear of confined spaces. He opted for sedation this time for his M.R.I - as has had several aborted attempts in the past. He did manage to get through it this time and said the sound of scanner was a similar rhythm to that of his boat engine - which enabled him to blot out what was actually happening. Hopefully, you’ll be able to do the same.

He was told to drink lots of water throughout the day, to try and prevent any further kidney stones forming. This is also why he takes 2 table spoons of apple cider vinegar (‘with Mother’ on the label) every morning with water - (you can also add honey to try and make it more palatable). His Consultant said he already had more stones forming when the first ones were removed but they were too deeply embedded in his kidneys at the time to be zapped. We hope the vinegar is helping… 🤞🏻

[Xhouse in reply to Gooner1947]

I have myeloma. It was discovered, much like yourself, during a routine blood test. It can also be detected in a urine test. The first thing they did was arrange for me to see a haematologist. Then it was a bone marrow tests and a full body scan MRI, which took well over an hour. Didn't bother me too much as there was a mirror which reflected the room back to you, given the impression that you weren't in such a confined space. I've had a couple of MRI's since. They monitor me every 3 months, full blood works, and though my numbers are at a level where some require treatment due to bone lesions, so far those numbers are stable and I'm feeling pretty okay. So it's a wait and observe thing. It's also a balancing act, as in do they give me the treatment now, chemo or stem cell transplant, while I'm fit and healthy enough to withstand it without too much trouble (hopefully) or do they wait until the numbers start rising when I may then not be feeling just as good. There's some excellent treatments out there these days, and I was told by the specialist that they're fast aiming towards the day when the disease will be categorised just like diabetes, i.e. a suffers can live for many years with the correct medication.

[Taviterry in reply to DodgyTickerMum]

I have a small IgM paraprotein too small to quantify and a MGUS. I'm not having a great experience with my Hospital Haematology team (13 days and counting for the result of an "urgent" blood test that might have been sent to the wrong hospital 30 miles away), which is inclined to refer me back to my GP surgery. The latest in a succession of GPs glanced at my blood results and said that they might shown an indication of cancer (myeloma), but eventually the haematologist assured me that I hadn't got it. My kidney result showed me I'm right on the lower threshold.

I took drink apple cider vinegar as it seems to be one of the very few ways of combating lactic dehydrogenase, the reading of which is the most extreme of all my results.

[Gooner1947 in reply to Taviterry]

Thank you. Hopefully the haematologist will come to same conclusion with me.Re the apple cider vinegar. What quantity you drink daily?

[Taviterry]

Twice a day, I drink a tablespoonful of apple cider vinegar mixed with a teaspoonful of bicarb of soda in a glass of water. This is my own potion to offset lactic dehydrogenase, which is comparable with the lactate acid generated by cyclists and runners that makes their limbs heavy. "LDH" is experienced by a minority of patients who've had replacement heart valves.

The bicarb of soda also acts as an antacid, and taking it reduces the need for Lansoprazole and the like; recently we've had a thread on the lines of "do we really need to take them?"

I'VE FORMED THE ABOVE OPINIONS AFTER MUCH RESEARCH AND MY COMMENTS HERE DO NOT CONSTITUTE ADVICE.

[Taviterry in reply to Taviterry]

Inevitably there can be consequences of taking too much apple cider vinegar (isn't there with everything?), and Googling will reveal what they are. In my case I'm conscious it can lower potassium levels (mine are median - halfway between the upper and lower recommended limit s) and also creatinine levels (mine is already just under the lower threshold).

My main aim is to lower my LDH as I'm very conscious of the debilitating effect it has on my body. I'm due more blood tests at the end of November; after that I don't know how often I'll get them.

My cocktail of supplements seems to be working, as after a couple of months of fatigue I'm suddenly getting my energy back (but then I've had so many false dawns ...)

[nilmonisikdar40]

Hello ,

I am rather concerned about the diagnosis of myeloma which indicates, as far as I know, something to do with bone marrow. Has your specialist discussed the further test for example full body bone marrow scan in view of the fact that blood test showed paraproteins although you stated full body MRI was normal.. I do not think there is a direct link between aortic stenosis and coronary artery disease. The normal ejection factor is reassuring. What does M.G.U.S STAND FOR? Look forward to hearing from you.

[Taviterry in reply to nilmonisikdar40]

We're getting into quite technical areas here, but I understand that in a small minority of cases a new heart valve can lead to anaemia, with the bone marrow not making enough red cells to replace the ones that are being destroyed, as can myeloma. My NHS haematologist has ruled out the latter.

The test to which I referred yesterday is for something very rare and nasty and I won't specify it here. It's exactly two weeks to the hour that I had the "urgent" blood test, with my GP nurse sending the sample off also marked "urgent". Last night I sent off a second plaintive email of enquiry. It doesn't help that I've had two previous experiences with the haematology department in which admin staff have dealt (after a fashion) with my queries, seemingly being reluctant to refer the matter to a nurse, never mind a doctor.

UPDATE. Following the second email, the NHS haematologist left a message on my phone this afternoon to say that the test was negative - as I'd expected. Pity that I didn't pick up the original call as I would have welcomed a brief discussion, including asking "what next".

(It might be churlish to observe, but a visiting friend overheard the message, from an Indian doctor, and, of Asian heritage herself, remarked that it was difficult to understand. The Indian nurses who attended me when I had my TAVI were all very good, and the kindest nurses I've met in the past 20 months were black. I wouldn't want anyone to think that I'm a racist.)

[scentedgardener]

MGUS is mono clonal gammopathy of undetermined significance.I have this and have 6 monthly blood tests to monitor. In an unfortunate few cases it can lead to multiple myeloma. I've known I've had MGUS for about 6 years and so far I'm okay. I've never been referred to haematology, it's never been suggested.

[nilmonisikdar40 in reply to scentedgardener]

Thanks so much for the important information. I am so glad that after 6 years you are okay and that is reassuring.

[fishonabike]

an Ejection Fraction (EF) of 64% is good - it is well within the normal range of 50 - 70% - EF does not reach 100% , but doctors often forget to tell us this so it can sound rather low

[Prince123456]

you say your ejection fraction is 64%, which side left or right ?

[Gooner1947 in reply to Prince123456]

That I don't know.

[ss3k in reply to Gooner1947]

i believe it's the left they go by

[Displacedheart]

Wow sounds like you are going through it. Interestingly on my long road to a diagnosis I have a iga elevation found at the beginning. Then 4 years later my displaced heart. I am aware that these proteins can cause amyloid proteins to build up in organs and blood vessels just like cholesterol does - I hope for you it's not myeloma and its just the proteins. Interesting to read though, I do hope you get some definite answers soon, keep us updated

[Gooner1947 in reply to Displacedheart]

Hopefully my appointment with Haematologist won't be too long to wait. I will, if course, post an update after I've seen Haematologist. I am currently waiting for an appointment for my coronary angiogram.

All about "waiting" now which is probably the worse part!

[bluemoon572]

I also have a myeloma related illness called Al Amyloidosis which damaged my kidneys from elevated abnormally high free light chain proteins produced by malignant plasma cells in the bone marrow and I also have moderately severe aortic stenosis. I have been told that these amyloid deposits can contribute to the formation of aortic stenosis. In preparation for a coronary angiogram it's crucial to protect the kidneys from dye induced damage and the hematology oncologist collaborates with the cardiac cath team in doing this. I'm told that appropriate hydration and limiting the amount of dye during the procedure as well as monitoring the kidney function closely after the procedure are key. Your team will provide such care and keep you safe.

[Slobojoe1]

that is a good EF 64. Mine is about 35 , and has been for years.

[Gooner1947 in reply to Slobojoe1]

The only problem for me is I don't know what it means in the bigger picture.I'm diagnosed with aortic stenosis. Cardiologist said I'll need coronary angiogram.

What can I expect after that. Will I need a new heart valve?

I just don't know. I asked my GP. yesterday and she didn't know.

[bluemoon572 in reply to Gooner1947]

echocardiography findings determine whether one has critical aortic stenosis requiring valve replacement include a mean gradient of 40 or more,a valve area of less than 1 cm and a left ventricular ejection fraction of less than 50. Symptoms of chest pains with exertion,fainting spells& congestive heart failure are also critical signs. The coronary angiogram is to determine whether there's associated significant artery blockages that also need treatment. I'm without these findings at this time and will have another echocardiogram in a year's time. I'm hoping you will be in the same category also.

[Gooner1947 in reply to bluemoon572]

Thank you. Hope all works out well for you.It's just this EF of 64% which confuses me.

Supposed to be "good" but why am I getting breathless. Since taking furosemide water tablets the breathlessness is better.

I had whole aorta ct scan last week and the other day a Carotid Vascular Ultrasound.

The cardiologist will now get results and hopefully arrange for coronary angiogram.

[bluemoon572 in reply to Gooner1947]

Like me you're left ventricle EF shows good contraction but my LV shows poor relaxation and is too stiff, a condition called diastolic dysfunction which makes me somewhat breathless with exertion, Your cardiologist will check for this.

[Jackiesmith7777 in reply to Slobojoe1]

My husbands is 33% . Do you have any symptoms ?

[Slobojoe1 in reply to Jackiesmith7777]

Yes I have lots log problems heart related. I had a cardiac arrest in 1983 at 38.yrs And a defibrillator fitted. In 2002 . I am on loads of tablets, and had 2 stents fitted about 30 years ago. I was getting shocked a few times from the defibrillator. 10 years ago , and had an ablation which reduced the shocks to nill. I am coming up for 79 now. And live a pretty normal life.

[Jackiesmith7777 in reply to Slobojoe1]

It’s good to know that after all you’ve been through your still here with us x

[Slobojoe1 in reply to Jackiesmith7777]

Thanks jackie

[Gooner1947 in reply to Jackiesmith7777]

Yes. I was getting breathless.

[Clarenden]

64% is very good. 50-55% is good mine is 45-50% so mild heart failure

[Jackiesmith7777]

my husbands ejection fraction is only 33% because of his AF which caused his stroke . I’m hoping it will maybe get up to your level . He s having another eco in October which will be 14 months after his first Jist after his stroke so keeping everything crossed for him and for you x

[DodgyRog]

I’m 77 and also a Gooner but live in Northumberland. In 1974 whilst playing football I suffered an injury tearing a kidney. I discovered that it was the only one functional as the other hadn’t developed at birth. Fast forward to 2012 and I’m very short of breath. Never I’ll but went to GP. I went for Angiogram as it was Aortic Stenosis. My Aortic Valve was Calcified but all my Arteries and other Heart aspects were perfect. After electing for animal based valve l was quickly admitted and out of hospital in 3 days. I did rehabilitate NHS fitness at Leisure Centre and went back to work until I as 70. It changed my life overnight. I have never felt fitter. It was a life changer and you won’t regret it I you have a valve replacement

[Gooner1947 in reply to DodgyRog]

Thank you so much.

[Anothernewbie]

I was diagnosed with MGUS (monoclonal gammopathy of unknown source) in February 2012. This shows I have paraproteins in my blood. These can lead to myeloma. My usual reading is 19-22 and is stable. Although obviously I do not know if you have proteins or paraproteins, if they are the latter and you have a trace, then I have been told there is nothing to worry about until the level reaches around 40.

Good luck with your tests.

[Gooner1947 in reply to Anothernewbie]

Thank you