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FINALLY just yesterday I got the call. My appointment is on the 26th. Only because there was a cancellation, otherwise he's booked until after the first of the year. I also get my abdominal/pelvic CT that day as well. So things are moving along.

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Hi Sweet,

 

I'm so glad to hear you managed to get an appointment relatively quickly, even if it meant you had to take a cancellation. At least you can get the CT scan dealt with that day as well so things are moving. :emoticons-yes:

 

I shall be thinking of you. :emoticon-hug:

 

Best wishes,

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  • 2 weeks later...

Thanks Shelley! This coming Wednesday is the day. I think I'm more worried about the abdominal/pelvis CT then the lungs. I keep thinking if it were really serious wouldn't my rheumatologist have been a little more concerned.... I don't know. Guess I'll find out soon. I've been doing fairly well with the waiting, but getting nervous again as the day draws near.

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I'm cutting and pasting this from a blanket email I sent out to family and friends, so if it seems a little strange that's why. :)

 

Ok here’s the scoop – I’ve had shortness of breath for about a year, which led me to having a high resolution chest CT done. (about 3 weeks ago) Results of this showed 3 nodules in my lungs, numerous cysts on my liver and my pancreas is atrophying. (shrinking)

 

The nodules in my lungs could be 1) nothing to worry about 2) fibrosis from my scleroderma 3) cancer. This led to further work up –

Yesterday I spent a fun filled day in Spokane, seeing doctors and having tests. I saw a Pulmonologist, to discuss the chest CT and my shortness of breath. As far as the nodules, he’s “75% sure they aren’t cancer”, and says most likely they are either nothing, or fibrosis from my scleroderma. Follow up for that is another CT in 6 months. If the nodules are unchanged, I will repeat chest CT every six months for 2 years. If they double in size or grow significantly with the next scan then the chance it’s cancer is pretty good. And I have no idea what happens then.

 

Beings that I have never smoked, nor have been around second hand smoke much, if it is cancer there’s a high chance that the lungs is not the primary location. In other words it’s metastasized (spread) from another location in my body. Erring on the safe side, and to evaluate my liver and pancreas more closely I had a high resolution abdominal CT with contrast done yesterday. Results to be determined.

 

Ok enough about the nodules. The other issue is my shortness of breath accompanied with tachycardia (fast heart rate). The pulmonologist is concerned it could be Pulmonary Hypertension, which is one of the most serious worries in terms of my Scleroderma. Pulmonary Hypertension (PH) is abnormally high blood pressure in the arteries of the lungs. It makes the right side of the heart work harder than normal. The right side of the heart pumps blood through the lungs, where it picks up oxygen. Then, the blood returns to the left side of the heart, where it is pumped to the whole body.

 

When the small arteries of the lung become narrowed, (this is difference than clogged arteries that you hear of such as plaque buildup. That happens in the large arteries) they cannot carry as much blood. When this happens, pressure builds up. This is called pulmonary hypertension.

 

The heart needs to work harder to force the blood through the vessels against this pressure. Over time, this causes the right side of the heart to become larger. Not enough blood flows to the lungs to pick up oxygen.

 

I went through extensive pulmonary function tests yesterday, and I think I did fairly well. (Ms. optimism) The next step, is a Nuclear Ventilation/Perfusion Scan (VQ Scan) it studies both airflow (ventilation) and blood flow (perfusion) in the lungs. The purpose of this test is to look for evidence of a blood clot in the lungs, (pulmonary embolus,) that lowers oxygen levels, causes shortness of breath, and can be fatal. Also I need an echocardiogram (ultrasound of my heart). This is so he can watch the structure of my heart as it’s beating, and to evaluate my heart valves. I’m getting both of these next Thursday.

 

If after these two tests, the pulmonologist isn’t satisfied he has clear answers, then I will have a right heart cath. This is the passing of a thin tube (catheter) into the right side of the heart and the arteries leading to the lungs to monitor the heart's function and blood flow.

 

I guess that's it for now. I'll try to keep you updated along the way.

 

I’m not overly worried about it – just taking one step/day at a time.

Love you all!

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Hi Sweet,

 

What a day you must have had!!

 

Okay, then, but what about the liver and the pancreas, or is that for another doctor? Oh no, wait, I missed that scan on the first read through. When do you get those results, did they make any comments about that?

 

:emoticons-group-hug:

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No, they didn't say anything about how it looked during the exam, but I asked my primary care physician to call me with results today, so I didn't have to worry over the weekend. But just a few minutes ago, I thought, maybe I don't want to know before the weekend, because my son and granddaughters are coming for a visit, and I just want to enjoy that. :)

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Hi Sweet,

 

My goodness, you certainly have had a time of it with all your tests and you have more to follow! Still it's good that they are actually doing something now and treating you with the seriousness that you deserve.

 

I do hope you have a lovely weekend with your son and granddaughters and won't have to wait too long for the results after that.

 

:emoticons-group-hug:

 

My very best wishes to you,

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Pamela, good luck with all your upcoming tests. May you pass inspection on all fronts. Keep your chin up and think positive thoughts until someone tells you something that you have to deal with differently. You can still stay positive it just takes more work in doing so. Please let us know how you are fairing from time to time.

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My abdominal CT came back, showing numerous lesion on my liver, and a mass in my vagina. I'm leaving now to see my primary care doctor. He wants to feel the mass, and decide where we go from here. I think he was leaning towards getting an ultrasound on both. I already have an appointment with my OB-GYN in February for my annual fun stuff, so we'll see. This Thursday is my Echo and VQ Scan to check heart and lungs for PAH.

 

Keep the good thoughts coming!

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Hi Sweet,

 

Oh my goodness. If its not one thing, it's another, isn't it? Or in your case, another on top of another on top of another. What an awful week. Exactly how are you supposed to be able to manage the stress from this?!

 

I think they really owe us some stress management help immediately following certain appointments. There are sure times I could have used a counselor right after getting some test results. Can you see it now, being ushered from the scan results straight into the office of a comforting therapist, with low lights, pleasant music and a list of tips to help survive the stressful experience in grand style...and then being passed off to a massage therapist with aromatherapy and a two hour deep massage, followed by a beauty makeover complete with water-resistant mascara, and then dinner at a five star hotel with the waiter suggesting their newest drink called Massive Relation Guaranteed?

 

Oh my, I can sure dream, can't I? And all those things and more I wish for you, as you and your doctors sort out the wheat from the chaff with all the tests and exams.

 

:emoticons-group-hug:

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Oh Sweet, many, many good thoughts for you! :emoticons-i-care: :emoticon-hug:

 

I shall be thinking of you constantly and here is some extra good luck fairy dust for good measure. :fairy:

 

My very best wishes to you,

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