Saturday, November 1, 2014

Halloween, eventful week

Trick or Treating was great; so thankful it is in the afternoon! That afternoon was so warm, sunny and NICE for once! No coats (hallelujah!)
I think it was awesome my Sis' let Zan goes as what he really loves!
Zander as a 'Monarch' - his true love and choice (so adorable)!

'Bells the Princess'

Earlier in the day, after Sunday School which was as usual well and lovely, (I love the kids I teach) sitting in Church I was seriously dealing with massive nausea - I always keep Zofran on me which I took more than one is supposed to but thankfully I was able to keep from throwing up! Otherwise the week was eventful with a family funeral (beautiful but sad as most funerals are - both a end and a beginning ie the end of a great man and the beginning of a great 'life' in Heaven.
Otherwise for the past few weeks I'd been dealing with SOB (shortness of breath-air hunger) episodes, R sided pain which eventually began to also occur under my R breast and in to my chest. This seemed to get a little worse vs better over a 2 week period and occurring quite frequently. Earlier this past week (Halloween week) after going back and forth with my Primary drs. office they (on-call dr., my PMD was out sick herself) advised I go to the ER due to the chest portion of the symptoms. Knowing on my end it wasn't likely cardiac as they suspected I instead asked the Nurse if I first could call and talk with my Cardiology Team which was fine.
Shortly after I called the ACHD Cardiology Nurses line the NP called me back and as I guessed my Cardiologist felt it was likely more Pulmonary related than Cardiac and did not think the ER was the best course to take. They want the PFT (breathing test) results though those aren't until the 11th due to my ERT Infusion being on the other day(s) they could have done.
Once the PFT's are done Cardiology is (I guess, per the NP) moving the Cardiology Appt. up another month (originally scheduled 3mo after last Echo, 2mo after I last saw them) to review test results and clear me before the VP Shunt surgery. I don't think it's that they think the surgery will be a problem, more they just want to cover bases given symptoms.
That all said in the mean time these symptoms are still occurring so I 'mycharted' with my PMD once she was back in the office and went in and saw her Fri. Her likely diagnosis is Pleurisy (inflammation of the lining of the chest wall) which is the same side as the TPL Shunt drains in to though we have no way to know is that the cause (if fluid sits in this space to long it can cause irritation) or is it a virus or who knows. In any case she (PMD) is ordering a CT Scan with constrast for this coming week as she to wants to cover all basis before the VP Shunt surgery and if symptoms don't improve i'll take a steroid pack (which I could have started yesterday but opted not to).
Otherwise below are some pics - thanks for stopping by,

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