We're tentatively scheduled for 2PM on Monday at North Central. Pre-op at 10 AM. Still waiting for insurance approval as of 4 yesterday. Hopefully BC BS won't stall like they are on the Reclast.
Brandy and Megan are coming tomorrow afternoon at 12:30. It will be wonderful to be able to hold Megan because I obviously won't be able to after surgery.
I got big hugs from the boys yesterday. They are SO excited about going to Disney for the week. It is going to be hard not to see them for two weeks. They keep me smiling.
Went shopping last night and got new pj's that I can hopefully wear at the hospital after ICU. I HATE hospital gowns.
Going out to breakfast with Brye at 9:30 this morning.
Saturday, October 13, 2012
Thursday, October 11, 2012
Saw Mathai today
Flu and pertussis shots and she checked me for diabetes because of the steroids and weight gain. All is well.
Stopped at Marx's office to check on the Reclast infusion and was told BC BS is stalling the approval. Like I would have a useless procedure done just to waste their money!?!?!?!
Have to call about getting a portable oxygen unit for just in case we lose power over the recovery period. Don't know how my lungs will react to no extra oxygen.
Pissed that I didn't hear from Malve's office and when I called at 4:00 the surgery still wasn't scheduled yet.
Stopped at Copenhagen on the way home and looked at chairs I can live in for recovery,
Found one I love but it is $795 and the ottoman is another $295. Not now.
Walked in on Chris talking to Brandy. She is coming on Tues and apparently AnnMarie is coming the following week also. I love that they want to be here but they really can't afford it. I hate to cost them money even though I'd love to have them here.
Romes for dinner because I was too lazy to cook.
Stopped at Marx's office to check on the Reclast infusion and was told BC BS is stalling the approval. Like I would have a useless procedure done just to waste their money!?!?!?!
Have to call about getting a portable oxygen unit for just in case we lose power over the recovery period. Don't know how my lungs will react to no extra oxygen.
Pissed that I didn't hear from Malve's office and when I called at 4:00 the surgery still wasn't scheduled yet.
Stopped at Copenhagen on the way home and looked at chairs I can live in for recovery,
Found one I love but it is $795 and the ottoman is another $295. Not now.
Walked in on Chris talking to Brandy. She is coming on Tues and apparently AnnMarie is coming the following week also. I love that they want to be here but they really can't afford it. I hate to cost them money even though I'd love to have them here.
Romes for dinner because I was too lazy to cook.
Saw The Surgeon
Spent three hours talking with the surgeon, Dr Malve, and now Chris finally understands why they may never know the reason or cause of my lung issues,
The fibrosis is the end stage of whatever is going on with my lungs. The Lupus or whatever ever connective tissue disease I have may or may not be causing the lung issues. The doctor said that it could be my lungs are just super sensitive to some allergen, Possibly dust from bird excretion. Which is really weird.
We are trying to schedule the biopsy for Monday or Tuesday so I can be home for the weekend and then hopefully for just another few days. I HATE taking time off from work. Being there keeps me going. I can't sit around the house all day and vegetate.
Not looking forward to the pain but it will be worth it if we can get answers.
Rather than using a scope it will be an open lung biopsy because then he doesn't have to collapse the lung. It isn't as ideal as the other because he can see less of the area he has to biopsy from but since I am on oxygen already it is his only choice.
He stated that of all the surgeries he does a lung biopsy scares him the most because of the complications that can develop.
The fibrosis is the end stage of whatever is going on with my lungs. The Lupus or whatever ever connective tissue disease I have may or may not be causing the lung issues. The doctor said that it could be my lungs are just super sensitive to some allergen, Possibly dust from bird excretion. Which is really weird.
The biopsy will at least give us a new starting place for future treatment or it will tell us that we just have to treat the symptoms until I can lose weight and be put on a waiting list for a transplant.
We are trying to schedule the biopsy for Monday or Tuesday so I can be home for the weekend and then hopefully for just another few days. I HATE taking time off from work. Being there keeps me going. I can't sit around the house all day and vegetate.
Not looking forward to the pain but it will be worth it if we can get answers.
Rather than using a scope it will be an open lung biopsy because then he doesn't have to collapse the lung. It isn't as ideal as the other because he can see less of the area he has to biopsy from but since I am on oxygen already it is his only choice.
He stated that of all the surgeries he does a lung biopsy scares him the most because of the complications that can develop.
Sunday, October 7, 2012
Good but long day
Chris ended up working most of the day. Home at 7 but he made a $13,000 sale.
I watched Ev while Ariana went shopping with Christa and Ro. We watched some tv together. Earlier the girls rode the plasma cars for quite a while. 57 degrees out!
Came in and Facetimed with Brandy and Megan. Meg was SO tired.
Ro brought the rest of the stuff down from on top of the pool table, dismantled the twin bed and threw away the mattresses and moved the queen bed into the guest room.
Nice to have a guest room again.
Used my oxygen almost all day.
Cooked a bunch and the girls made cookies while Ro grilled.
Ms. B came to visit.
I watched Ev while Ariana went shopping with Christa and Ro. We watched some tv together. Earlier the girls rode the plasma cars for quite a while. 57 degrees out!
Came in and Facetimed with Brandy and Megan. Meg was SO tired.
Ro brought the rest of the stuff down from on top of the pool table, dismantled the twin bed and threw away the mattresses and moved the queen bed into the guest room.
Nice to have a guest room again.
Used my oxygen almost all day.
Cooked a bunch and the girls made cookies while Ro grilled.
Ms. B came to visit.
Saturday, October 6, 2012
Had to pick up more of the Lovenox, another $1700 billed to BC/BS. Asked the pharmacist about the bruising and he said there is nothing I can do about it.
Did my good deed for the day and met a nice neighbor, Angie. I saw her walking on Culebra on my way to get the script and was surprised to see her on 1560, near the creek, on the way home. I think I scared her a little when I stopped to give her a ride but it was hot and she was far from home. Turned out she lives at the corner. I gave her my name and number and told her to call me any weekend when she needs a ride.
Christa ", Ro and the girls came for a visit. Ro moved all the packed boxes for me. Would have taken me all day. It is so nice to have the girls here.
Chris picked up a pulse oximeter for me when he went grocery shopping on his way home from Wimberely (Pleasanton this morning) . My SAT rate stayed up in the high 90's if I wasn't moving. Down to 92 climbing the stairs and 87 after a coughing fit.
Made mac salad, hot dogs and beans for the kids, at their request.
Got my car inspected on Thursday night and Moses, the manager was asking me about my oxygen. He said his sister, Melissa was diagnosed with Lupus this past week. Her symptoms sound a lot like mine. She is on oxygen, has 45% lung capacity but is not doing well. Supposedly the doctors will tell her what her prognosis is later this week. He is so worried about her. I promised to call her and offer any support I can. I called and left a message, inviting her to the Better Breathers Meeting on Tues. but I haven't heard from her.
Did my good deed for the day and met a nice neighbor, Angie. I saw her walking on Culebra on my way to get the script and was surprised to see her on 1560, near the creek, on the way home. I think I scared her a little when I stopped to give her a ride but it was hot and she was far from home. Turned out she lives at the corner. I gave her my name and number and told her to call me any weekend when she needs a ride.
Christa ", Ro and the girls came for a visit. Ro moved all the packed boxes for me. Would have taken me all day. It is so nice to have the girls here.
Chris picked up a pulse oximeter for me when he went grocery shopping on his way home from Wimberely (Pleasanton this morning) . My SAT rate stayed up in the high 90's if I wasn't moving. Down to 92 climbing the stairs and 87 after a coughing fit.
Made mac salad, hot dogs and beans for the kids, at their request.
Got my car inspected on Thursday night and Moses, the manager was asking me about my oxygen. He said his sister, Melissa was diagnosed with Lupus this past week. Her symptoms sound a lot like mine. She is on oxygen, has 45% lung capacity but is not doing well. Supposedly the doctors will tell her what her prognosis is later this week. He is so worried about her. I promised to call her and offer any support I can. I called and left a message, inviting her to the Better Breathers Meeting on Tues. but I haven't heard from her.
Went to see Rao and had more blood tests. My numbers are not coming up to where they should be. Doubled the Coumadin to 10 Mg a day. Stay on the Lovenox until I see her next Monday. She says she won't bill me for that appt. More extensive bloodwork on the 18th at 9:45.
Finally talked to Marks and my pulmonary tests show I'm down to 53% lung capacity. Diffusion rate is 26% Referral to Dr.David Malave for an appt to talk about lung biopsy.
Wed. at 1:00. Margot is working nights.
Tuesday, October 2, 2012
Really frurstrating day
I went to PT and it felt SO good to actually exercise a little but it sure didn't last long. Ten minutes on a stationary bike and I had to keep going slower and slower because my SAT rate kept dropping under 92.
Next was 10 minutes on the arm bike which I love, then ten on this machine where you lay on your back with your feet up against the wall and push your weight up while raising your arms above your head. I loved it and it was just too darn easy and my SAT rate was ok so I asked to stay on it and have a little increase in weight.
Had to stop after 5 minutes because I dropped to 83. Therapist couldn't believe I wasn't feeling my lungs stress but it was no worse than walking upstairs. Actually a lot less strenous.
I was advised to buy a pulse oximeter and use it often because obviously I'm not listening to my body enough. I am so damn frustrated I want to sob.
Called Marks's office to get the results of my last pulmonary tests and to find out the status of the lung biopsy and haven't gotten a return call from him or Michael. Will call again tomorrow.
Talked to Sharon about dietary restrictions and she said that yes, I can eat dark green veggies I just can't stop (or start) eating different foods suddenly because it will mess with the meds. Consistancy helps. I see Rao on Thursday to see how I'm doing with the Lovenox and Welfarin. My stomach looks like someone beat me.
Next was 10 minutes on the arm bike which I love, then ten on this machine where you lay on your back with your feet up against the wall and push your weight up while raising your arms above your head. I loved it and it was just too darn easy and my SAT rate was ok so I asked to stay on it and have a little increase in weight.
Had to stop after 5 minutes because I dropped to 83. Therapist couldn't believe I wasn't feeling my lungs stress but it was no worse than walking upstairs. Actually a lot less strenous.
I was advised to buy a pulse oximeter and use it often because obviously I'm not listening to my body enough. I am so damn frustrated I want to sob.
Called Marks's office to get the results of my last pulmonary tests and to find out the status of the lung biopsy and haven't gotten a return call from him or Michael. Will call again tomorrow.
Talked to Sharon about dietary restrictions and she said that yes, I can eat dark green veggies I just can't stop (or start) eating different foods suddenly because it will mess with the meds. Consistancy helps. I see Rao on Thursday to see how I'm doing with the Lovenox and Welfarin. My stomach looks like someone beat me.
Subscribe to:
Posts (Atom)