Heart Failure with preserved Ejection Fraction (HFpEF)

Having health records online may be a risk to privacy but the X-Ray and Imaging chain of imaging services offer an app when you go there for a procedure.  I took the pamphlet and I signed up for the service so that I could get my results for my recent echocardiogram.

I saw Dr Jo before the results were available online anyway and I came away thinking that nothing much had changed except for the fact that that the pulmonary valve stenosis had reappeared in my life.  The last I knew of it was that they had decided via a past echo that I didn't have one.  It turns out that it has been on record again since 2011 when Dr Fleur must have ordered an echo.  We spent time discussing this at my doctors appointment because Dr Jo was also unaware.  Nevertheless it is only a minor stenosis.  Everything came across as minor the way Dr Jo gave me the results.....  the slight mitral valve weakness, the minor pulmonary valve narrowing and some diastolic abnormality that I barely took notice of because she said that the main thing was that I had a good ejection fraction of 65%.  I did not realise the significance of that.  It sounded all pretty "normal" or rather "benign" like my murmurs have been described in the past. 

I have known for years that my diastolic blood pressure was too low and I have been surprised that no-one bothers to look at it even when I have provided charts of readings.  It is always the top blood pressure reading they care about and it has been getting up rather high for me, over 140, lately but only at the doctors.  At home it has been higher than normal though.  I have also been carrying fluid around my lower legs and feet.  That's why I had the echo, for pedal edema.  I've been getting a lot of imprint marks from even loose socks and my boots on my legs and out-of-shape dispersions of fluid after I take them off.  Dr Jo did see a similar raised area when I was there.  It all got confused with my right foot being larger but later I remembered I had indeed dropped something heavy on my foot.  The more general swelling seemed to come upon me when I went for slightly inclined walk up to the surf-life saving tower at Currimundi Lake.  I could also feel fluid in my fingers that day.  My knees have felt tight on bending and I have wondered if it was fluid in there too.  Anyway I've noticed the puffiness in low places since that day.  I was there with a couple of other ladies who have fibro and/or cfs.

The little conversation group we had formed on Facebook had been trying to get together face-to-face since the May 12 Awareness Day event.  All but Anne (the one on the right) had to miss that due to not being well enough.  It was the first time we had heard of something local to participate in. The May event was in support of #MEAction. 

Two other ladies could not make it to our own little get together in July but they live beyond Caloundra in Buderim.  Small distances matter when you have limited spoons.  We have another lady in Ningi which is too far for us but her hubby gets her around sometimes.  She came to meet me at a birthday gathering I had at the RSL one year.

Anyway getting back to the report, it states quite clearly that I have grade 2 diastolic dysfunction and Wikipedia defines that as:

There are four basic Echocardiographic patterns of diastolic heart failure, which are graded I to IV:

• The mildest form is called an "abnormal relaxation pattern", or grade I diastolic dysfunction. On the mitral inflow Doppler echocardiogram, there is reversal of the normal E/A ratio. This pattern may develop normally with age in some patients, and many grade I patients will not have any clinical signs or symptoms of heart failure.
• Grade II diastolic dysfunction is called "pseudonormal filling dynamics". This is considered moderate diastolic dysfunction and is associated with elevated left atrial filling pressures. These patients more commonly have symptoms of heart failure, and many have left atrial enlargement due to the elevated pressures in the left heart.

Grade III and IV diastolic dysfunction are called "restrictive filling dynamics". These are both severe forms of diastolic dysfunction, and patients tend to have advanced heart failure symptoms:

• Class III diastolic dysfunction patients will demonstrate reversal of their diastolic abnormalities on echocardiogram when they perform the Valsalva maneuver. This is referred to as "reversible restrictive diastolic dysfunction".
• Class IV diastolic dysfunction patients will not demonstrate reversibility of their echocardiogram abnormalities, and are therefore said to suffer from "fixed restrictive diastolic dysfunction".

I also have the left atrial enlargement.

I also have plenty of  breathlessness.  I was blaming the ME/CFS.  However currently I am experiencing a high number of palpitations and it has been going on for weeks.  Everything could be worse since going on the Olanzapine.  I have had these heart symptoms in the past including pain in a very focussed area under my breast.  I would call them pains, rather than one continuous pain.  I have had it all before and it has all gone away after a season of it.  I usually go on the Deralin but lately I noticed that I have been too dizzy on it and that I just don't feel like it is helping properly.  Surely it slows down the heart palpitations, even can cure them but...lately my bottom blood pressure has been so low on it that all it is doing is widening my pulse pressure (the difference between the top and bottom) and when that happens I do not feel good.  Helping in one way and making things worse in another.  I have not actually told anyone about it.  I have just tended to put up with the heart palpitations instead of taking the Deralin.  I think I need a heart doctor.  Why wouldn't Dr Jo suggest it that day?  All I can think of is that it used to be thought that an ejection fraction above 50 or 60 meant that there was nothing wrong but now days they acknowledge a kind of heart failure that still preserves the ejection fraction, which means its systoles doing their pumping-out are fine.  It is called diastolic dysfunction or diastolic heart failure but it is heart failure with preserved ejection fraction (HFpEF).  Wikipedia goes on to say that there are few treatment plans for this kind of heart failure, except for diuretics to bring down the fluid levels in the legs or other places.  It seems to be emerging as an ever increasing problem but insufficient research has been done.  Where have I heard that before?

But there have been studies on older adults without systolic hypotension and with a wide pulse pressure, showing that isolated diastolic hypotension was associated with a significant increased risk of new-onset heart failure. Reference: Guichard et al available at https://www.ahajournals.org/doi/abs/10.1161/circ.122.suppl_21.A19925
The word "isolated" just means in the absence of.

Heart failure with preserved ejection fraction (HFpEF) is an emerging epidemic and there’s no pharmacotherapies yet proven to be useful for it,....... 

https://www.6minutes.com.au/news/get-ready-next-cardio-epidemic

Going back a few years, it was quite well known in the patient population that me/cfs caused diastolic (filling) dysfunction.  Dr Paul Cheney was the main man if I remember correctly.  I may add to this post if I find any of his papers warning of the cardiac problems in ME/CFS.

Please add any relevant papers that you have come across in the comments section below.

Autumn health rave and Birthdays

I did something I've been putting off. I've really gone downhill in the last 12 months. I knew I was pushing it going out for my birthday when I used up my energy just hurriedly walking to my ride out the front. Due to brain fog I had to come back to the house to get something and then back to the car again and by this time I was walking as slow as.....someone with congestive heart failure....was going to say an 80 year old but that is totally wrong....my mother is 87 in a couple of weeks and she would not have any idea what walking with heavy legs, heart palpitating, and breathless at such a slow pace that you are embarrassingly obvious is even like.  Anyway I phoned Centacare for domestic help.

I'm already with Centacare for lawn mowing but I filled in all the paper work today for this stuff. I'm pleased to find out that they do one hour blocks instead of a 2 hour minimum. That's easier (and cheaper) for me to tolerate. Just the floors is fine for starters. I can still tolerate being upright so I am not bed bound and I can walk slowly but not for long before I know I am doing damage.  I need the Deralin again.  Toilet and back is about it but I am used to doing everything tiny bits at a time anyway.

Also am now trying to decide about the mobility scooter. Would you believe that it has been on consignment in a shop for 2 years and it still has not sold so I guess I can just bring it back home for a delivery cost (which is nothing to sneeze at) but I remember not using it much you know. When you really need it just to get out of the house, you have to have enough brain power to operate it and be able to weather the elements and have enough energy just to get ready to go out on it and that makes it harder to use than a car. I can still drive so I am seriously considering taking it to park at a nice view on such a nice day but at the same time I know I would be better off just going back to bed or playing my game.   All the storage problems I had with that scooter, do I want that again? Even the hassle of charging it up all the time? I can't fit it in my car so it is no good for going shopping and using it to go shopping might be an outing up to Pelican Waters but do I really need to add all that extra time to something that can take less than half an hour if I had the energy.  Saving energy is the name of this game.  Going into deficit like I did on my birthday is asking for relapse which could become permanently established as the "new normal"   We had April showers a lot and again.  It is either too hot out there or raining. The scooter decision, it can wait.

My brain is still good enough to entertain me; thanks my lucky stars. Take away my brain and I might start getting depressed again. I can live with the forgetfulness but not the inability to engage in conversation or pursue some online reading/research. If I get back there, please someone come and drag me back to Dr Andrew because I don't know where else to go. But first I will have to cash in some Super (again). Better do it now because if I get any further into bed bound knowing me I will just lie there day in and day out because the thought of pushing myself to even get to a doctor is all too much.

I should see if he will treat this chest thing that is NOT mycoplasma pneumoniae according to the traditional tests. I should, I should. I should...but how? And I reckon I must be nearly due for another hi-res CT scan to check on that lung nodule yet no-one has made any attempt to kill off what I reckon is a stealth infection apart from that one short course of antibiotics that gave me profuse watery diarrhoea.  If I was a doctor, I would have given myself more of a chance of seeing at least a reduction in that lung nodule size through the use of steroids if not more antibiotics but if it is still there I will be going to see Andrew even if it kills me just so I can prove it is not a tumour before they start doing biopsies and shit.

I guess what this post is about is acceptance that I need help.  I still don't want it and I really don't want people coming in here and "assessing the situation" and making notes about.....me.  I did not like it last time.  They watched me disintegrate psychiatrically when the antibiotics crossed the blood-brain barrier last time.  At least I am more aware of what could go wrong now and my treatment will have to be slowed way down at the first sign of anxiety.  But right now, I'm as placid as they come.  I certainly don't sit here worrying about my future but I still have to consider it from time to time which means climbing out of the one-day-at-a-time approach which is relatively comfortable now that I look after myself.  I'm really glad I persevered with obtaining pain meds officially.  I have some measure of comfort for several hours every day but that damn Targin does not last 12 hours like it is supposed to.  Seven maybe?

Something good healthwise happened in April, the migraine things I associate with my back being "out" (which it probably isn't since nothing I can do posture-wise including some convoluted positions, does not seem to help get rid of it even if it shifts the pain/pressure) disappeared all by itself.  The physio appointment made it worse.  So I guess that headache broke the record since it went from before Christmas to early April.  It's not really gone but it is not being provoked simply by moving my arms within my "safe" range of movement.  I am not ready to walk around with my arms above my head though.

All sorts of things happened healthwise in April.  Actually, they haven't stopped happening since April 2015 when I had high blood pressure, hives and high blood sugar.  Quitting egg white, sugar and taking Deralin/Inderal solved those problems but then I had major problems with gastroparesis which I came to recognise required a change of diet which unfortunately does not bode too well for the diabetes so it has been a constant juggling act ever since.  That is pretty typical of my life now.  Juggling the effects of medications and their withdrawals with the state of my gut and head.  Serotonin sensitivity made itself even more obvious the more I took pain killers particularly Tramadol but I was glad to have the Tramadol to act as a quick and dirty relief for the Serotonin withdrawal head zaps on movement so it was a life saver if I forgot to take my anti-depressant and went into withdrawal (within hours).  When I went on the stronger pills I thought it would be a good idea to cut down on the anti-depressant again but they don't make half-strength capsules only a liquid suspension which is fairly unkind to my reflux.  The year had already seen me cut down and make the switch from Effexor to Lovan in an effort to shed some of this weight but it only worked so much in that regard and my pain levels have been much higher on Lovan compared to when I was on Effexor, and the forgetting to take my tablet withdrawals were even worse on Effexor.  Maybe there is an anti-depressant that is somewhere between the two that would suit me better but trial and error is not a fun way to find out.

I've slept a lot of May away so far.  Been in recovery mode which means not doing much more than playing Wartune and attending to the doggie.  And when you are forced to bed, it is nice to have my toes licked by Milo.  I still get the giggles

My 61st birthday was the start of yet another relapse but at least I got out to the RSL for lunch and I met a couple of new people.  Lymies.  I was not feeling very well this time last year in Hervey Bay either but I had several days of holiday before it to wear me out.  This year I have been able to get out way less without suffering a relapse.

For some reason, this year I wanted to be with people but so many did not turn up.  Brenda and Sharon had other things on.  Ange got side-tracked and forgot at the last minute.  Rob piked because of the rain? Shazz did not show.  Karen turned up late and Kerryn from Beerwah just popped in with her hubby to meet me.  She cannot sit so that is why she did not come for the actual lunch.

Cohen had a birthday in April too but Brett made no attempt to include me.  Granted, they only had him for a couple of hours after school but a quick phonecall would have been nice now that skype and facetime calls seem to be too much trouble to organise for Brett.  I sought out Stacey on Facebook so that I could at least find a couple of birthday photos of Cohen.  We have not been on each other's friend list for over a year.  He is 8 years old now.