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Ground glass opacity, enlarged lymph nodes after multiple pulmonary emboli


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Old 05-22-2018, 09:15 PM   #1
anibelleee
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Join Date: May 2018
Location: LAWRENCEVILLE, GA, USA
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Ground glass opacity, enlarged lymph nodes after multiple pulmonary emboli

Hi All,

I am hoping someone has had a similar experience and can tell me what they found out.

On 9/27 of last year I had bilateral PEs (4 total) due to constant flying for my job - never any history of any lung issues before.

After a failure on xarelto, I had 2 more PEs on 11/18 last year. Since then I've been on coumadin and haven't had any more PEs. All of this treatment has been by a hematologist/oncologist. I have not been being followed by a pulmonologist.

However, on CTs since then, the drs reading them have noted first - indication of enlarged lymph nodes, a large left lobe ground glass opacity that has shrunk in size in last two months and a new, small upper right lobe ground glass opacity that has appeared since the CT two months ago.

My symptoms: I've never stopped having chest/back pain, I have SEVERE shortness of breath and exhaustion that is getting worse - I get out of breath just drinking fluids or eating a meal. But my pulse-ox stays above 95. (But my pulse-ox was 98 when I had the 2 PEs so I don't trust that much).

I also have had anemia and hypocalcemia, though those could be related only to having had gastric bypass 8 years ago. Suddenly in last 6 weeks I've had severe leg edema twice -first time I gained 19 lbs in 5 days, this time I've gained 12 lbs in 3 days.

First time I went to ER and they said it was probably cellulitis and they gave me lasics and antibiotics. But it has come back despite the treatment - not anything that looks like cellulitis, just the edema. And now, last two weeks, I've started falling. I've hit the floor twice, stumbled but caught myself multiple times. I don't feel very dizzy, but when trying to stand up, sometimes it's like my legs just slip out from under me. I've never been a napper or fallen asleep easily but now if I sit down I fall asleep quickly (I have been tested for sleep apnea - negative). I've had memory issues, though an MRI of my brain was done with they hypocalcemia and it was fine.

I see the hematologist tomorrow for the "official" reading of the CT scan I had yesterday. I'm scared, of course. But I'm really worried that no one has said anything about or worried about the lung abnormalities - why am I the one bringing this up?

Anyone have any thoughts? I know ground glass opacities can occur during a PE, but 6 months after to have new nodules when there's no more PE? Trying to make sense of this.

Thanks so much for listening to my late night fear...

 
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Old 07-30-2018, 10:16 AM   #2
mjscared61
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Join Date: Jul 2018
Posts: 1
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Re: Ground glass opacity, enlarged lymph nodes after multiple pulmonary emboli

Hi i just joined this group because i have an incidental 3mm noncalcified nodule on right lung, and im petrified! and i feel your anxiousness also! im so sorry your going through all of this and i do believe theres a light at the end of the tunnel and a good one to for both of us, may i ask what size is your nodule and i have been reading about GGOs opacities on the internet because i just saw this new pulmonologist at loyola hosp in chicago and had my ct one at the hospital my primary doc is out of it was sort of a pain finding the specialist i needed with my ins i have an HMO so i had to find in network pulmnologists but getting back to the gound glass nodule i think thats what i have because the dr said its eally tiny at 3mm and hazy so when i got home looked it up and came across GGOs they can be malignant but extremely slow growing and they can be benign so im glad i joined because i need the support too i dont know if i am of any help but im here for ya and i think your going to be just fine keeping you and everyone on this thread in Prayer one thing i am doing im working out i have just increased my cardio stretching it clears my head and also im at more of a risk for cancer because i have moderate COPD! talk soon

 
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