Spent the afternoon and evening helping Brye move. She finally has almost everything out of our garage. I kind of forced the issue of all the stuff in the garage because I really need the room to put the boxes I packed in preparation for our move.
till haven't found a decent one story house but I'm hoping it is real soon. The stairs are my downfall. I can be relatively ok just puttering around slowly but the stairs do me in every time. It's gotten to the point where I avoid them as much as possible.
I went on Freecycle while waiting for Brye to come over and I looked at all the "Wanted's" I offered all the baby stuff including the high chair to one person and some DVD's to another but no response yet.
Went online when I got home to find out how to stop bruising from the Lovenox shots but it seems like the sting and bruising are inevitable. Started the Coumidin today too. Left ankle still swelled. Stomach a mess again. I thought that was not going to be an issue after going off the Plaquinil.
Brye's new place has a pool practically right outside her door and it is really beautiful for an apartment complex. She said she'll give me a key so I can exercise there rather than having to join a gym. I'm going to take her up on the offer.
Chris was in Austin and Killeen today. Came home with a fever again. Had one on Wed. night/Thurs. morning. Hope it has nothing to do with my white cell count and platelets being up.
Saturday, September 29, 2012
Friday, September 28, 2012
Well I managed to copy and paste my medical history from the last year but for some reason it is all one big mess. I added breaks but they only show up on the edited version. When I publish they disappear.
Still haven't found the spell check which I need because my typing is so bad.
Gave myself the third Lovenox shot and now my belly is bruised. Margo said I probably did it too close to the skin.
No call back from Marks today so I'm still not sure if the lung biopsy can be scheduled for the week of the 15th. I really want Mom and Sharon here if possible. It will keep Mom sane and not worrying and Sharon can handle the staff at the hospital.
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.
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.
Wednesday, September 26, 2012
More BS
I still have to do a medical history of the past nine months but I this week has been one thing after another. I went to physical therapy $36 co pay to learn to exercise and still breathe. I kept stressing that point and they just kept telling me I was doing great with the tests (stairs and a 6 min walk test) All I came away with was not to let my SAT rate drop under 90. It's usually at 88 with slow movement so that was useless. I saw Dr Rao a hemotologist and she had me schedule a venous doppler for this Tues. Got a call 10 min. after the appt. to see her today. I will go tomorrow before my appt. with Michael at Mark's. Office for more pulmonary tests. Margot says I have a blood clot behind my left knee.
Monday, September 17, 2012
Medical History
If I can figure out what I am doing this will be the place I can track just about everything that I need to in preparation for the lung transplant I will most likely need within 3 to 5 years.if things don't stabalize with my *&*)(%#&@@&() lungs. Not a happy camper today. Finally got my head around having a lung biopsy but not that I have what is called a terminal illness.
I;m on nightly oxygen and can't move at more than a snails pace without getting short of breath if I don't have it on but I'm still working and want to keep working as long as possible but it is getting harder every day.
Medical History
Born at 7 months but had strong lungs then. Both parents smoked. I never did.
At age 13 my Grandma died and my mother swore I was so upset I gave myself asthma.
Spent the next few years getting allergy tests and weekly cortisone shots that did little to control my breathing.
By age 20 I had an alburtol inhaler with me constantly but never thought it did much good.
Yearly bronchitis and one two ER visits for breathing problems but I swore never to go back when at about age 35 I was given 4 shots of adrenalin to get me to stop wheezing during an ER visit, I left before they(Mather Hospital) could give me a fifth and make my heart jump out of my body.
I remember a drug named Theofalin but no others. I never stopped wheezing,
At age 41 I got a divorce and moved from NY to GA. My asthma pretty much went away. Moving to TX a year later I was pretty much sympton free for many years.
A bout with pneumonia at age 50 and then yearly bronchitis in the fall followed.
I was fat but had no other medical problems. No hospitalizations. No major illnesses.
Did have testing for thyroid problems after a complete physical. I was exercising every day plus walking an hour a day and eating almost nothing but still not losing weight. Final advice was to cut down to 800 calories a day and to keep up the 2 hours a day of moving a lot. Didn't work. Gave up and stayed fat.
At age 54, on Thurs, Oct 20th we were traveling from TX to GA and I became very sick. By the time we got to GA I was coughing constantly and spitting up flem. Diagnosed with bronchitis, Given a Z Pak.and prendisone by Dr Mefford in Houston. Mentioned my purple fingers when was cold. Told it is Renyauds (http://en.wikipedia.org/wiki/Raynaud's_phenomenon ) and to keep my hands warm.
Dec. 5th I was still sick and after going to the eye doctor I went to an Emergency Clinic where I was Xrayed and told I had pneumonia again. Was given a 10 day antibiotic, prendisone and liquid albutoral for my nebulizer, which of course I couldn't find. Bought a new one. What a waste of money. Found out later with pulmonary testing that it did me no good. (which is what I always believed in the past0
Was advised to find a pulmonologist because my fingers were purple. Still couldn't breathe well so I made an appointment with Dr. Louis D:Avignon
I;m on nightly oxygen and can't move at more than a snails pace without getting short of breath if I don't have it on but I'm still working and want to keep working as long as possible but it is getting harder every day.
Medical History
Born at 7 months but had strong lungs then. Both parents smoked. I never did.
At age 13 my Grandma died and my mother swore I was so upset I gave myself asthma.
Spent the next few years getting allergy tests and weekly cortisone shots that did little to control my breathing.
By age 20 I had an alburtol inhaler with me constantly but never thought it did much good.
Yearly bronchitis and one two ER visits for breathing problems but I swore never to go back when at about age 35 I was given 4 shots of adrenalin to get me to stop wheezing during an ER visit, I left before they(Mather Hospital) could give me a fifth and make my heart jump out of my body.
I remember a drug named Theofalin but no others. I never stopped wheezing,
At age 41 I got a divorce and moved from NY to GA. My asthma pretty much went away. Moving to TX a year later I was pretty much sympton free for many years.
A bout with pneumonia at age 50 and then yearly bronchitis in the fall followed.
I was fat but had no other medical problems. No hospitalizations. No major illnesses.
Did have testing for thyroid problems after a complete physical. I was exercising every day plus walking an hour a day and eating almost nothing but still not losing weight. Final advice was to cut down to 800 calories a day and to keep up the 2 hours a day of moving a lot. Didn't work. Gave up and stayed fat.
At age 54, on Thurs, Oct 20th we were traveling from TX to GA and I became very sick. By the time we got to GA I was coughing constantly and spitting up flem. Diagnosed with bronchitis, Given a Z Pak.and prendisone by Dr Mefford in Houston. Mentioned my purple fingers when was cold. Told it is Renyauds (http://en.wikipedia.org/wiki/Raynaud's_phenomenon ) and to keep my hands warm.
Dec. 5th I was still sick and after going to the eye doctor I went to an Emergency Clinic where I was Xrayed and told I had pneumonia again. Was given a 10 day antibiotic, prendisone and liquid albutoral for my nebulizer, which of course I couldn't find. Bought a new one. What a waste of money. Found out later with pulmonary testing that it did me no good. (which is what I always believed in the past0
Was advised to find a pulmonologist because my fingers were purple. Still couldn't breathe well so I made an appointment with Dr. Louis D:Avignon
Subscribe to:
Posts (Atom)