Update: CT Didn't Reveal Anything Significant

[slightlybroken]

I want to thank everyone for your notes and prayers...I couldn't have made it through without you guys.

Well, my husband and I have been running around and doing a lot of calling because of the loss of our insurance. I've applied for Medicaid for the whole family. We are still waiting for papers on the COBRA insurance. It wasn't until last week that we found out that the family COBRA would be $499 a month. We just can't afford that on what he is going to get from unemployment. From unemployment...they give 50% of what you made last year, and we just won't be able to spend that kind of money with the mortgage, food, utilities. We haven't decided to keep just COBRA on me and and have  MEDICAID as a secondary insurance or just go with the MEDICAID and not pay for COBRA.

In the meantime, my mother who's a nurse at the local hospital, is watching my hyper coagulant blood panels to see if any are flagged. I had a hyper coagulant study done since they took me off of Coumadin to see if I have any underlining conditions that caused my DVT last year. So far, everything is good. We are still waiting for the Factor 5 Leiden and a few other genetic ones.

I called the lung specialist and told them about the loss of my insurance and if something was wrong with my CT could they please inform me. There was only one other thing to check on, and that was these nodes in my lungs. If they came up clean for any disease process...then I think everything that could be covered, is officially covered and checked. The only disease it leaves me with is MS. The MS specialist did say that I could have some UnDXable disease...something new..but I don't really buy that. I just don't have enough evidence according to them.

The CT scan revealed 2 nodes in my lungs.  The report says that they believe they aren't malignant in nature but they aren't typical granulomas either. I have 1 node in the right lung and 1 node in the left. Their parameters are partial calcified. They are unchanged from the previous CT scan from last year. Both nodes are peared shaped. According to the CT nothing else is involved (no other organs) and the lungs otherwise have no other problems. Sarcoidosis doesn't match this CT scan. They said that they would like to recheck in a year. So, I guess what is attacking me isn't Sarcoidosis/neurosarcoidosis. If it was, it would be present on the CT scan and the lung tissue would be involved including typical granulomas. So I'm firmly placed in Limboland once more.

I guess these types of nodes can occur because of an old infection. The last time I suffered from an old infection was 2006, which caused my asthma to act up. I had to be put on high powered steroids to stop it. They at first thought I had pneumonia..but my x ray was clear. Maybe it occurred then..I don't know.

I have been ill for several days now. My mother thought the stress of everything last week wore my body down. I have been doing breathing treatments to help clear my lungs. I haven't been running a fever so I guess that's good. I'm thinking about going to the doctors anyways because I'm almost out of medication for the breathing treatments.

My symptoms have been on a full fledged rampage. My double vision returned but this time it was different. You could actually see the offset of the eyes this time. My husband looked at me one day and told me something was wrong with my eyes and was I having trouble with them. I told him it was like it always is with me ..yes. I guess my right eye would be centered like it should be, but the left, when I looked at something straight on would be tilted upwards (off center). It would be worse at night when I had been up for a long time.

I've been trying to keep things together and get all this stuff figured out. If the insurance thing is taken care of, I feel it will be a load off my mind and I then can worry about other things. This is such a trying time for us and it is complicated by my UnDX disease. I feel like if I only had a name to what is going on and treatment...I would be OK. Instead, I have more questions than answers...and names to disease I don't have.

[slightlybroken]

Thanks PastorDan and LuLu..I'll keep checking in when I get this worked out.

Kathy..as always..Thanks for the advice..I didn't think of that point.

Julie- I've never had a pulmonary function test. The doctors, I guess never felt I needed this test..or bad enough to order this one. I usually don't have problems breathing until recently. I do have a chest cold and things do seem to cause the asthma to act up when this happens. I have notice through out the winter months that it's not as good as it use to be when I walk my son to school. My lungs feel constricted. Sometimes I'll have wheezing..sometimes not..but I'll get short of breath. These are the results with the sizes of the nodes......

ABDOMEN CT FINDINGS 2008: There is a small  somewhat pear shaped nodule in the medial aspect of the posterior right costophrenic angle measuring 12.7 mm in its long axis and 9.7 mm in its short axis. There appears to be thin limb calcification around most of its perimeter. Internally, attenuation values are mostly in the soft tissue range from 20 to 80 Hounsfield Units. There is a fiber strand attaching this to adjacent medial pleural surface. A second nodule of similar increased density is seen in the lateral posterior costophrenic angle on the right. Density measurements on this nodule are similar. Lastly, there appears to be an ovoid soft tissue density barely seen in the deep medial left posterior costophrenic angle. Margins are well circumscribed and these appear nonaggressive in their morphology. They are not typical for granulomas however.

CHEST CT FINDINGS 2009: Left upper lobe 7 x 6 mm perhaps partly calcified nodule is redemonstrated, unchanged from previous exam. This is best seen on image 20 of 61. There is also right posterior medial midline probably superior segment right lower lobe subpleural nodule seen on image 26 of 61 measuring 6 x 4 mm unchanged as well. Right and left lungs are otherwise clear. Hilar structures and mediastinum demonstrate normal anatomy with no malignant adenopathy or mass. No hiatal hernia is appreciated. The bilateral adrenals and visualized left kidneys as well as visualized liver, spleen and pancreas appear to be unremarkable. Subcutaneous, muscular and osseous structures fail to demonstrate any significant axillary adenopathy or mass. Lower neck region is unremarkable. There is some mild spondylosis of the thoracic spine.

[Fluffysmom]

Hi, your insurance update friend, here!  I just talked to my insurance friend, and she said that if there is any way for you to do it, pay for your COBRA coverage, and have the rest of the family covered by Medicaid.

You can then continue with the same doctors, the same hospitals, etc., where Medicaid will probably be a whole different story.  The basic healthcare is covered, but you need a little more than that, and you need the doctor's that are familiar with your history.

I hope and pray that you'll be able to find the funds for covering just you under COBRA; I want you to have the best (continued) care!  

Hugs,

Kathy

[Sarahsmom46]

I was just wondering about your pulmonary function scores?  Did your lung doctor perform these breathing tests on you and if so, do you know what the results were?  The nodules can be from old infections as you mentioned.  Sometimes our lungs heal really well and infections don't result in scars, but sometimes the healing process is interrupted and a scar remains.  It may be something like MS plaques, some heal some don't. You should definitely do the follow-up CT in one year as they suggested. The nodules need to be monitored.  

Do you know what the size of the nodules are?  Sounds like you are ok as long as you aren't having breathing problems.  Be diligent about taking your asthma meds though and hopefully you won't have any thing new show up next year.  Take care.

Julie

[Lulu54]

Hi SB,
its good to have an update from you, even though it contains more questions than answers.  Keep being strong for yourself - an answer is out there somewhere.  

Keep us posted on you and your DH's progress, ok?

your neighbor,
Lulu

[PastorDan]

We'll keep praying over here.  Thanks for the update.