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#1 mews

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Posted 07 August 2011 - 05:32 PM

Hi all, this is my first post on this site. I just had my first visit with a cardiologist and I was shocked for sure. There were so many issues I am somewhat nervous now. I went there to have an Echo stress test. First my blood pressure was high twice,they would take it laying down it would be low, then I would stand up and it would go through the roof. Then my EKG was abnormal,so now I'm on the treadmill and I was having a hard time breathing once again, I feel as though I cannot finish it. It was finally over he came and told me that I need to bring the results to my rheumatologist right away because she will be very interested in the results.

So the results are as follows, I have a small pericardial effusion (fluid around my heart), thickening of the right ventricular wall and the septum, left ventricular- E/A reversal consistent with diastolic dysfunction, grade 1 heart failure...WHAT?! Then THE BIGGIE, estimated pulmonary artery systolic pressure of 36 mmHg, then the words are written, Mild pulmonary hypertension. Now he told me about the first couple of things in person and then the rest I found out while getting my notes to take to the rheumatologist's office, which by the way will take me 3 months to get in because I'm new to all this!!

I guess what I need to hear from someone is: is this common for it to be in the heart and lungs with all this stuff going on? I already have the GI issues, bladder issues, skin changes on my face. I haven't seen the best doctors as of yet, most keep saying you don't have that!! I'm just getting very good insurance now. I thought the cardiologist was good but I feel he didn't answer my questions and just pushed me onto another doctor.

What do you all think? I hope I wasn't all over the place and I made some sort of sense here.

Thanks all,

Mary

#2 Sheryl

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Posted 07 August 2011 - 08:03 PM

Hello Mary and welcome to ISN forums. It sounds like you really should make an appointment with a Scleroderma specialist. Not just any rheumatologist will be able to properly care for your needs. Keep us informed on how your appointments go.
Strength and Warmth,
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#3 Joelf

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Posted 08 August 2011 - 06:26 AM

Hi Mary,

Welcome to thse forums!

I heartily second Sheryl's opinion that if possible you should see a Scleroderma expert as it appears that you're being pushed from pillar to post and not getting very satisfactory answers.

I've included links to Cardiac Involvement and Pulmonary Hypertension which I hope you'll find informative and helpful. Thankfully, although I have lung involvement, I don't have pulmonary hypertension or heart involvement, so can't advise you from my own experience. However, I'm sure some of our other members will be able to give you some first hand information.

I'm very pleased that you've found our forums and I'm looking forward to reading more of your posts. :emoticons-group-hug:

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#4 Jeannie McClelland

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Posted 08 August 2011 - 07:31 AM

Hi Mary,

Welcome from me too. Yes, I agree - you need to see a scleroderma specialist. (You knew I was going to say that, didn't you?) It's comletely reasonable for the cardiologist not to answer any questions that are outside his area of expertise, so don't feel that he's pushing you onto another doctor (shifting responsibility as it were), he's doing the right thing.

I don't have much else to add, except there is a form of blood pressure problems (reasonably common and benign) called orthostatic or postural hypotension that causes BP to drop for a short while when standing from a sitting or lying position. I'm not a doctor, but that might be what you are experiencing.

The most important thing for you to be doing right now is not to panic and don't stress yourself too much. Hard to do, but easy to say, I know, but stress is bad. Have a look at the info we have on dealing with the emotional side of things. It's worth reading.

Best wishes,
Jeannie McClelland
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#5 mews

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Posted 08 August 2011 - 11:48 AM

Thank you all for writing back to me.

Your support is very much welcome! I do have an appointment with a very good Sclero doctor. but it will take 3 months before I can get in! I have seen so many incompetent doctor's in the last few years, the sheer thought is very scary. The last primary care doctor I just saw looked at a letter from my dermatologist saying I have Telangiectasias all over my lips, tongue, cheeks, and chin and that he feels I could have CREST. Now this is a doctor whom I never saw before; she just walked into the room, hadn't even examined me yet and said "What can I do for you?" She then picked up that letter, read it then threw it at me and said, "Well you don't have that." I thought I would die, this is what I constantly run into, people like this. So clueless with this disease. One doctor can set you back months.

I just moved to Maryland. This cardiologist I saw seemed good, he did find all this stuff wrong, but I am a little confused about why he only told me about some of it, and why he's not treating any of it and not running more tests just "make sure you see the rheumatologist". I guess this is the way it's done and I need to follow the rules. I just don't want to wait 3 months for the answers.

Thanks all for having a place like this to vent!! You're the best..

Stay Well,

Mary

#6 Joelf

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Posted 08 August 2011 - 12:29 PM

Hi Mary,

It's excellent news that you've got your appointment with a Sclero Specialist, albeit in three months time.

I can see how being treated by unhelpful doctors can make you a bit cynical about the rest of them; however, as Jeannie has stated, the Cardiologist is referring to the Sclero specialist and I expect you will get the full picture once you've had your appointment with him. I also saw a lung specialist first and thereafter was referred to a Sclero specialist and they do work together in order to get a complete overall diagnosis. I know when you're worried, three months seems a lifetime away! :(

Do post and let us know how you get on with your appointment, won't you? :emoticons-i-care:

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#7 Amanda Thorpe

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Posted 08 August 2011 - 02:14 PM

Hello Mary

Welcome to the forums! Don't panic about heart failure, I have had it since last year and I'm still here! Last year it was serious I was at class 3 out of 5 with ejection fraction of 32% (normal is 55-60%) so after a heart MRI and left/right heart catheter test I had a bi ventricular implantable cardioverter defibrillator put in. My right sided pressure was 35mmhg. This year my ejection fraction is better but not great at 35-40% and right sided pressure is up to 40mmgh I think. I see the pulmonary hypertension and rheumatology team shortly and will be seeking clarification about my recent diagnosis of pulmonary venous hypertension among other things.

I know that getting news about heart function can leave you shell shocked, especially when it's not what you were expecting. Last year in I went to that Royal Free for my yearly ECHO and lung function test expecting to hear more about a left ventricular bundle branch block that didn't necessarily effect heart function to be told I had myocardial fibrosis, was in serious heart failure with both systolic and diastolic dysfunction and elevated pressures in the right side of the heart. Many tests and a pacemaker/defibrillator

It is vital that you see a scleroderma expert given your heart involvement, my local hospital is 5 minutes away but I travel the 2 1/2 hour journey each way to the Royal Free as they are a centre of excellence for scleroderma. I know that three months is a long time but I was diagnosed in April 2010 and didn't get my bi ventricular ICD until September 2010 and I had serious heart failure, class 3 whereas you are at class 1 and I survived...so can you! :emoticons-yes:

Take care and keep posting.
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#8 mews

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Posted 08 August 2011 - 03:10 PM

Wow, thank goodness I found this forum is all I can say!!

Every one of you have given me something I can use today. I can't thank you all enough. I do know what makes me the most nervous is at night when I try to lay down to sleep, I feel the struggle to breathe. I wake up sweating and almost gasping for air. Now I'm starting to use an inhaler every night and morning. I also can't bring myself to tell my family the whole truth about what's going on with my heart.

My husband was with me when I had the tests done so he knows some of it, but I haven't really told him all of the rest of it. I feel so bad and don't want to worry them. They are all starting new jobs and I just can't bring them down like that and make them worry! Does anyone else ever hold back all the "BAD" news from the family? Or am I the only weirdo? :VeryHappy:

Stay well,

Mary

#9 Joelf

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Posted 08 August 2011 - 04:06 PM

Hi Mary,

I think it's quite natural to want to spare our nearest and dearest the worry of such a difficult and bizarre disease to explain; I'm sure many of our other members have felt the same. In the very beginning when I was first diagnosed I remember I couldn't even spell it correctly, never mind explain the ins and outs of it! :emoticon-dont-know: However, once I got past that stage I managed to thoroughly bore all and sundry with every minute detail.....all my friends became mighty sick of hearing about it! :rolleyes: As for being weird I shouldn't worry; a lot of people consider me to be most peculiar.....the happy idiot, that's me!! wink.giflaugh.giflaugh.gif


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#10 Amanda Thorpe

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Posted 08 August 2011 - 04:08 PM

Hello Mary

I have had the struggling to breathe sensation when lying down as well as waking up gasping for air, I had this pre pacemaker and just ignored it! Not a good policy I must say, have you tried pillows to make you a bit more upright...making sure it doesn't cause any reflux issues.

Yes, I withhold information from my mother but that's for my own benefit as she just flips out at bad news, she lives next door to me so I see her every day. Mind you when I didn't tell her how bad the heart failure was last year I ended up in A&E with supra-ventricular tachycardia and who was with me all the way in the ambulance...Ma! She sure knew then!

Do you mean telling them you have scleroderma or that you have heart problems as a result? The thing is you don't really know everything yet so could always wait until after you see the rheumatologist before you make any big announcements. That way you can counter any bad news with what treatment you are going to have, the thought of treatment always brings hope to family!

Ultimately you do whatever works for you, not anyone else. It is, unfortunately, your disease so you get to decide who knows what and when. I got my scleroderma diagnosis on a Thursday with my husband present, on the Saturday I had my mother, sister and niece come round so I could tell them what I had. I found it easier to tell them after the fact and all at once. Only you know what works best for you.

Take care and keep posting.
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#11 mews

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Posted 08 August 2011 - 06:11 PM

Ah Amanda, the pillow thing, I start out with at least 3, for both the breathing and the acid reflux, a short time later I am awake gasping for air with no pillows in sight. Maybe I should try and strap them to my head tonight!

That is very funny with your mother, my family all know about the scleroderma, it's now the heart and the PAH they are kind of in the dark about. I just feel like things are moving kind of fast! I wish my mom was here, I know she died from this disease, but she went undiagnosed. Whats funny is she would have acted just like your mom..but I think all loving moms would!

Stay Well,

Mary

#12 Sweet

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Posted 12 August 2011 - 09:47 AM

Hi Mary,

Welcome to the forums. I'm so glad you've joined us. I'm truly sorry to hear of the results of your most recent appointment. I have to chime in with the rest about seeing a scleroderma specialist. It can make all the difference. Please do keep us posted and hang in there girl! :flowers:
Warm and gentle hugs,

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#13 uknlv18

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Posted 13 August 2011 - 04:16 PM

Hi Mary,

Welcome to the forums, you have gotten great advice and I can't add anything other than I had trouble breathing and acid reflux issues, and I ordered a wedge for pregnant women on line and it helps loads. My pillows always seemed to squirt out from under me, or they made me get a crick in my neck. The wedge does a gentle incline to about 4 inches, and it works a treat!

Cheers,

Jean

#14 Shelley Ensz

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Posted 14 August 2011 - 08:54 AM

Hi Mary,

Welcome to Sclero Forums!

White you are waiting to see the scleroderma expert, you could consider talking things over with your primary care doctor, perhaps. I just want to give you a warm, welcoming hug.
:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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#15 mews

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Posted 14 August 2011 - 11:40 AM

Thank you Shelley for the warm wishes and great idea about talking to my primary doctor. I will go to see her right away, that's a great idea!

Jean that is a great idea about the pillow wedge, did it come with a cover? I also have the whole GERD stuff going on, in fact I'm not so sure what part of my body is not affected! :VeryHappy:

I do try to take everything with a smile on my face, but this heart thing really caught me off guard! :blink:

Stay Well,

Mary

#16 debonair susie

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Posted 15 August 2011 - 10:46 AM

Hi Mary,

I too, would like to welcome you here. Those who have posted before me have ptovided such great information;
I surely hope that you are able to get the most help soon, given your symptoms.

You spoke of your family and not wanting to share your health troubles with them due to new jobs, etc. Once you
have gathered and been assured that you have gotten things under better control, you may feel more comfortable
sharing with your family. In the meantime, do what is best for yourself, to keep your angst at the lowest level
possible.

Sending Soft :emoticon-hug: s, in endless supply :emoticons-group-hug:
Special Hugs,

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#17 Shelley Ensz

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Posted 16 August 2011 - 07:23 AM

Hi Mary,

You also asked about sharing news with your family regarding the results of your tests. You are grappling with a question which I think is common to nearly all of us. There is so much variation within families and individuals that I think that is nigh impossible for anyone to answer for you.

Many of us have families that really could care less about individual developments of the disease. It seems most people are unable to comprehend the basic idea of scleroderma, not to mention all its various complications. I also think there's a certain level of "illness fatigue" with our friends and family, in that they want to be discussing what's happening with their life and hearing about what positive things we've been doing lately. Then again, some families are very involved in all aspects of our lives and would be hurt or angry if we withheld the tiniest detail from them. Only you can know what's best for your family.

My only caution would be not to say too much until you've had a chance to ask your doctor what all the test results mean in your particular case. Some of us have had scleroderma heart involvement for very many years without significant progression or unbearable complications. It's not at all unusual to test out with "mild pulmonary hypertension" but to be PH-free when further testing is done -- or vice versa; or, to be even worse than thought upon further testing.

For example, my husband (who does not have scleroderma, but who has had a lung transplant) usually tests out as having mild PH (and has for years) but his right heart catheterization tests always come out fantastic. He is one of the false-positives. But its a two-way sword, which cuts both ways.

What you want to do is whatever will keep the communication flowing the best in your family. If you have a gabby family that is only happy with all the details along the way, well just gab away! If you have a head-in-the-sand family (which is probably the most common), the main bullet point of "scleroderma" has probably already been more info than they care to handle.

If your family falls somewhere in between (one of those rare Functional Families!), then you probably want to tell them you are concerned about your recent heart tests but simply don't know exactly how concerned to be until you have a chance to review the results with your doctor.

Thankfully, here in the forums we can discuss these things, pro and con, so at least we are not alone in our concerns. Here are some warm hugs, just for you.
:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#18 mews

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Posted 16 August 2011 - 05:51 PM

Thank you Shelley, You seemed to really hit the nail on the head with your post. This is such a busy time for everyone in my family, I don't want to stress them before I know what the scoop is.

I did speak to the cardiologist late today, for some reason he makes me feel like a small child and how dare I ask questions. I don't like that feeling. He kept saying we spoke about the fact you might have to have a catheterization, I was like..we did not..and my husband was with me, he never even told me I had PAH, I found that and some other stuff out when I got my notes to take to the rheumatologist's office. I'm not really liking this doctor so much anymore.

I mean I'm having a hard time walking, I'm gasping for air, I'm breaking out in an all over sweat. I don't know he now want's to run these tests and I'm not sure I trust him. Do you all think I should look for a new doctor, or am I overreacting? I'm not sure.

Stay Well,

Mary

#19 debonair susie

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Posted 19 August 2011 - 10:51 AM

Hi mews,

As you related the results of your doctorappointment, it sounded as though he was speaking of a different patient...not YOU!
:emoticon-dont-know:

All of this seems very disconcerting. If you have the latitude to search out another cardiologist, you may find another who will have a much better chair-side manner. No one cares for being spoken down to ohmy.gif Probably IS time to give this one the Heave-Ho!

Sending endless :emoticon-hug: s to help you through the process!


Special Hugs,

Susie Kraft
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