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Amanda Thorpe

Bad news...may get worse!

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Hello All

 

So Thursday I went to the Royal Free for my annual lung function test, ECHO and then to see the rheumatologist with the results. I can't remember his name but am going to find out so I can write a letter of compliments and thanks because he was superb, superbly superb in fact. A cardiologist also came in to see me and echoed what the rheumatologist had already said.

 

Well my numbers on the lung function are down a bit on last year but still within the normal ranges so good news there. We then moved onto the ECHO results and I was expecting to hear about the left ventricular (LV) bundle branch block (BBB) and whether it was now significant enough to require treatment, I was not expecting what came after. The BBB does require treatment but I lost where it fits into what came next and how the two correlate if indeed they do.

 

It appears that my LV is in a very bad way, severe something or another. Here's how I, a layperson understand it, the LV pumps the oxygenated blood that has come from the lungs to the body and something called an ejection fraction measures how efficiently the LV is doing its job. The normal ranges for the ejection fraction are 55 to 60% and according to last year’s ECHO mine was at 50% so no big deal. Now my ejection fraction is 25 to 30% so it has halved in a year which is not good. Well at least I now know why I get out of breath just walking up the stairs and have chest pain lying down. Of course I had not really evaluated my breathlessness prior to the appointment or the chest pain (feels like a stitch) and was taken aback by the reality of it as we discussed it.

 

So the culprit for the LV impairment and I think the BBB is either myocarditis or myocardial fibrosis. The rheumatologist talked about a pacemaker for both sides of the heart because of the BBB and/or cyclophosphamide particularly if it's myocardial fibrosis. I expressed my concern about the cyclophosphamide because it can affect the bladder and I already have interstitial cystitis.

 

Within the next 6 to 8 weeks I am to have various tests and then return to the rheumatologist for a definite decision on cause and treatment. I will soon have a heart MRI at the Royal Brompton and in May will be back at the Royal Free for a chest X-ray, another ECG and a right and left heart catheter test. Yes I know that most sclerodermians just have a right heart catheter but I do like to be different. I am not looking forward to it though because my poor little bladder won’t like the copious amount of water you have to drink afterwards.

 

So I just have to wait and see, of course now I have squillions of questions I wish I'd asked. Having been blindsided by the initial scleroderma diagnosis I never expected to be again but I most certainly have been.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Amanda! You obviously didn't read the Guidelines. We do not allow 'worse' around here, only better! Please observe the Guidelines in future.

 

With fondest regards and all best wishes,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hi Amanda. so sorry to hear of your heart problems- I can only imagine how shellshocked you must feel at the moment. At least it sounds like you have a good team on the case.

keeping fingers crossed for you.

Lizzie

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Hi Amanda

 

What a shock for you, I expect you are feeling a whole load of emotions right now. I just wanted you to know that I'm thinking of you.

 

Alison

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Hi Amanda

 

I'm so sorry to hear that things have changed for you. It is good that you think so highly of your doctors. No doubt, they'll help you make the right decisions for yourself once you are able to get past the initial shock/overwhelming feelings of it all. Please do your best to take care of yourself and not let the stress creep in on you if you can help it.

 

Just wanted you to know that I will be keeping you in my thoughts too! Take care.


Sending good wishes your way!

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Amanda,

 

So sorry for your recent problems. Always seems like stuff comes up, brace ourselves. My thoughts are with you! Again, one step at a time...HUGS!

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Amanda,

I am so sorry to read about your heart problems and certainly understand why you feel so blindsided. We have enough problems as it is, so the heart is the last thing we want affected. From what I have read, it is not common with scleroderma, but does happen with a small percent of us. I developed heart problems in January 2005 and had to get a pacemaker. A very emotional time but one that was short lived because I felt SO MUCH BETTER once I got the pacer.

 

Last year my cardiologist started tracking my ejection faction as well. The way my cardiologist explained it and from what I have read, a low ejection fraction indicates that the LV is contracting prematurely. Therefore, before the LV has a chance to be filled with blood, it starts to contact and eject the blood. This causes the efficiency of the heart (as measured by the ejection fraction), to drop. What the 2 electrode pacemaker would do for you is to ensure that the heart chambers pump correctly by controlling the timing. I'm sure that it would help you feel a lot better. Mine did.

 

I would love to talk to you about this more if you'd like. I certainly can relate to what you are going through and want you to know, like everyone else, I am here for you. Please feel free to send me a private message if you want to talk.

 

Lots and lots of hugs


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hi Amanda,

 

I am so glad Janey posted on your thread. With her first-hand experience, I hope she was able to allay some of your anxiety, with the information she passed on here.

 

I will keep you in my thoughts as you receive the tests that are on tap to further explore and give a clearer and more definitive answer.

 

{{{Extra Soft Hugs for You!}}}


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Amanda

 

I am so sorry to hear that you have all this happening.

 

Sending you loving and supportive thoughts.

 

Vanessa

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Hi Amanda

 

I am so sorry to read your post; what an awful lot you have to contend with. :(

 

I'm thinking of you & sending you very positive thoughts for a successful outcome; at least you're being dealt with by the best hospitals & consultants & hopefully the tests you are going to have will help to determine the very best treatment for you.


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Amanda

 

So sorry to hear things are not going to well at the moment & it's understanable that you are feeling sidelined by these recent changes but it is good to know that you are being well looked after by your health team.

 

Do take care of yourself.

 

Buttons

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Hi Amanda,

 

So sorry to read of your recent news, it's alot to get your head around at the moment, but I am so glad you have every faith in your consultant and hope you do not have to wait too long before your course of treatment is decided upon. The worst thing is the waiting and worrying, but I am sure once you know for certain what is going on and what is going to happen, you will be able to get your head around it and cope, I think the initial shock with each new set of symptoms will probably always happen to each and every one of us, but we have all had to learn and accept the biggest shock of all, which was when we were first diagnosed with scleroderma and all that it entails, I don't think anything can prepare you for that one!

 

Keep your chin up, try not to worry too much, we all know it's not good for us and start compiling a list of questions you want to ask the next time you see your consultant.

 

Take it easy

 

Sandy B

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Thank you all for your reassuring replies, it feels less of a gigantic problem and more manageable when you discuss it.

 

I am indeed very thankful that I am able to have full confidence in my medical team, it must be awful to face something like this and not have confidence in those administering your care. When the superbly superb rheumatologist mentioned the MRI I explained my phobia so he picked up the phone, rang the Bromptom and asked what they could do for nervous patients and there are indeed things they can do so now I am not particularly worried about having the MRI. I just wish this had been done in December, mind you having said that I could have rang them myself.

 

Well I shall keep you informed because it will no doubt be an interesting journey from here on out. Like I say life with sclero is never boring!

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Sending the warmest of wishes that you feels better soon. I appreciate your posting as the more information we have the better we can cope.

Well, most people's pace maker just goes "cha", yours will go "cha cha." So I will picture you dancing along with much improved vigor.

Best always, Cindy

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