Spent The Day Gathering Notes

Oct 20th traveling to Atlanta got sick and was diagnoised with Pnumonia on Monday 25th. Z pak and prendisone.

Dec 5th still not feeling better went to an emergency clinic and was told I had pneumonia.Bought a new nebulizer for liquid abuturol. Given a stronger antibiotic and more prendisone. Was told to see a pulmonologist. Still sick and hands blue (Renyaulds according to Dr Mefford) made an appt with Dr. D'Avignon. Had pulmonary tests done and CT ordered, told to see a rhumotologist for suspected Lupus. Made an appt. with Dr. Emily Marx for Jan.

Full physical at Meffords on Dec 31st.

JAN 2012 17th Saw Dr. Marx. ana markers high for Lupus. Got shots in hands for pain. Put on plaquinil an anti malaria medication. 18th hand xrays bad arthritis at base of thumbs. Still having problems breathing but can't get a call back from D'Avignon. Called on Thurs (19th), no return call over weekend called on Mon. Told he'd call on Tues. No call from him but office called and said he'd call on Wed. Thurs had argument with receptionist. She informed me I should NEVER expect a doctor to just call and I should have made an appt. (I'd tried but they'd said they couldn't fit me in!) Was told to call my GP or go to an ER. Wrote a nasty letter and delivered on the 27th and just kept my next appt. because I couldn't find anyone to see me sooner.

Saw Dr Marx inbetween and she asked what D'Avignon said. He always asks what she said. Don't they share noI feel like notes!?!? I feel like no one can help. May need to find another pulmonologist. Feb 1st Saw Dr Greiner to rule out a heart issue. EKG, Echo and bubble test. Was told all is well with my heart.

Feb 6th inally saw D'Avignon again and he reccommended a right heart cath as he said Dr Greiners results may not be comprehensive enough. Had right heart cath. All is well. Still not happy with not breathing well. Started Tessalon which helps with the cough but not the flem. Still on 60mg a day prendisone.
Dr Marx suggests cutting amount down. Had hard time getting oximeter to read as my hands were cold and blue.Finally got an 88 SAT rate before doing 6 min. walking test. Rate dropped to 83. Home oxygen ordered. Now taking prendisone, zyrtek,NAC and singular from Dr D'Avignon Imuran and Plaqunil from Dr Marx DiovanHTC, and Nexium from Dr. Mefford (Nexium upped to 2X by D'Avignon with Omeprozol 1x aday inbetween) Home oxygen delivered. Using at night and if I need to walk in a store. 2 canisters last 8 to 12 hours so I have to conserve at work for when I move a lot. Have one at the top of the stairs. Luckily I don't have to chase the boys around anymore. feb 14th started Imuran 3 a day feb 20th add 50,000mg a day Vit D then 50,000 once a wk for 8 weeks. feb 27th right heart cath

March 26th off Imuran liver problems according to bloodwork April 9th bloodwork better back on 1/3 Imuran will increseagain. April 16th Big change in eyesightsince Dec. Cut Plaqunil in half as per Marx. April 23rd flight to FL Flying with oxygen is a royal pain in the ass at the inspection. Had to get note stating I'd use it intermitentantly in flight. Didn't. Used in FL Unit weighs about 40lbs and is a pain to drag.

May 10th Chris had back injections on Brandy's birthday May 15th Finally gave up on D'Avignon and was able to get an appt. with Dr. Marks. D'Avignon is leaving the practice. We discussed my letter and lack of help by D'Avignon. Hopefully Marks is as good as he seems. My test came back a little better Lung capacity up from mid 50's to low 70's. Feeling a bit better but still coughing and lots of flem. Advised to use oxygen all the time. Prendisone stays at 20mg a day. All other meds stay the same. May 18th mamo all is well May 21st wrist shots @ Marx office Didn't work this time hands hurting like crazy again.

June 9th Balance Acupunture met with Chung Wu June 12th finally made it to a Better Breathers meeting and it was on feet! and walking. June 13th Chung 540 1st Appt IT WORKS!!!! I could start the car! Pick up milk. Sleep without crying that my hands need to be chopped off. June 20th Chung June 22nd Chung

July 1st Chung July 8th Chung July 18 I have bronchitis again Both boys have it. Pnumonia? Z pak Margo called in Had bone density test because of prendisone use. Have Ostiopenia. Need an infusion of Reclast once every two years. Need insurance approval.

Aug 29th More pulmonary tests. Down to 63% lung capacity and diffusion rate down a bit. Using oxygen every time we go out. Can't walk more than a hundred feet without being short of breath. Using more often at work. We tried to do a Roswell Alburqueque and Las Cruces weekend. Could not breathe in Albuqueque. Found out the elevation is the same as Denver where Dr. Marks advised me to NEVER go. Had wicked chest pain and had to use the oxygen on 3 constantly. Fractured a rib coughing. Margo did the xrays and ate the cost. PT ordered to teach me to exercise and still breathe. Useless!!! They want to strengthen my legs so I can walk easier. That isn't the problem. Lack of oxygen is! Going again next week but may not go more. $36 co pay isn't worth it.

SEPT Bloodwork at Marx office this month showed blood is clotting too much. Advised to see a hemotologist. Still waiting for approval for infusion. Saw Dr Roa. Had venous doppler.(Another $107) Clot in left leg. Put on Lovenox 2 shots a day for a week. then testing again. Also Coumindin starting Sept 29th. Rao was out of town. Sub. Dr was not very informitive. Margo explained reason for two drugs. Lovenox is fast acting until Coumidin kicks in. First shot I gave myself I lost half the medication on the table when I expressed air from needle.