http://www.nhlbi.nih.gov/health/health-topics/topics/ipf/
What Is Idiopathic Pulmonary Fibrosis?
http://www.med.umich.edu/whp/information/autoimmune-
disease.htmAutoimmune Disease: A Range of Discriminating Illnesses
An interesting Lupus blog
http://lupusgirlblog.blogspot.com/2009/02/this-new-lupus-blog.html
http://www.surgical-pathology.com/usual_interstitial_pneumonia.htm
http://www.umm.edu/news/releases/transplantable-lungs.htm
The next step is for Marks to talk with Marx and Rao. The prognosis doesn't look good. Malve talked of lung transplant but said there was a lot to do before that point. Number one not getting sick and then losing enough weight to even be considered.
Scares the heck out of me but I just have to keep going and pray for the progression to slow down.
Saturday, October 27, 2012
Thursday, October 25, 2012
Pathology Report
At low magnification, the main change in sections of the wedge lung biopsy is chronic intersititaal pneumonia characterized by a combination of inflamation and fibrosis. At least focally the fibrosis predominates and has a somewhat patchy distribution. It also includes areas of architectural distortion in the form of subpleural honeycomb change. While the fibrosis consists mainly of dense collegen depositions there are scattered fibroblast foci. The combination of findings establish the diagnosis of UIP. An unusuure feature is the presence of lymphoid hyperplasia in the form of peribronchiolar lymphoid aggregates. This is a relatively nonspecific finding although it is seen more commonly in patients with underlying systemic connective tissue disease compared to patients with idiopathic pulmonary fibrosis. In a sense this finding is consistent with the patients history of mixed connective tissue disease.
Dr Jeffery Myers at the University of Michigan Dept. of Pathology
Dr Jeffery Myers at the University of Michigan Dept. of Pathology
Tuesday, October 23, 2012
After surgery supplies
I need to remember to suggest to Dr Malve that he reccomend cheap Fruit of The Loom sports bras to any big cheasted women that he does lung biopsies on. They absorb the sweat and don't pull too bad on the gauze and they hold the breast up enough to help with the pain from the weight of the breast.
I swear I'd be more comfortable if I was flat cheasted.
Reminds me of not being given enough practical information for dealing with Chris when he had the hardware put in his back. No one tells you the things you REALLY need to know to get by day to day and not have to be running to the store or medical suppy place just to survive the days after a surgery.
The staples are still hurting which kind of surprises me. I'm usually much better with pain but I'm still often between a 5 and 6 when I inevitably forget to take something for it. Last Lovenox shot stung like crazy and bruised up bad.
Slept for quite a bit of the day while Brandy straightened up the house and did lots of wash. Hung the old curtins for me so we don't have to do it when we move.
Chris had an 11 in Dripping Springs and a 7 in San Antonio. Came home inbetween for an hour or so. Evening appt. was a bust too. They had less than an hour available to get a quote on a kitchen remodel. People are weird.
I swear I'd be more comfortable if I was flat cheasted.
Reminds me of not being given enough practical information for dealing with Chris when he had the hardware put in his back. No one tells you the things you REALLY need to know to get by day to day and not have to be running to the store or medical suppy place just to survive the days after a surgery.
The staples are still hurting which kind of surprises me. I'm usually much better with pain but I'm still often between a 5 and 6 when I inevitably forget to take something for it. Last Lovenox shot stung like crazy and bruised up bad.
Slept for quite a bit of the day while Brandy straightened up the house and did lots of wash. Hung the old curtins for me so we don't have to do it when we move.
Chris had an 11 in Dripping Springs and a 7 in San Antonio. Came home inbetween for an hour or so. Evening appt. was a bust too. They had less than an hour available to get a quote on a kitchen remodel. People are weird.
Monday, October 22, 2012
Bloodwork at Rao's
Doing better today. Saw Dr Rao. She was not happy that neither Malve nor Marks consulted with her before the biopsy. I'd called her office the day it was scheduled to let them know and to change my next appointment but she doesn't have that in her notes.My INR is 1.6 so I have to stay on the Lovenox for the full ten days. Seeing her on Thursday after staple removal.
She also said that because she was away when I was first started on the blood thinners there were tests that should have been done beforehand but now we'll have to wait until I'm off the coumadin ~ probably in about 5 months. Two tests were run for abnormalaties but both came back negative. I have to ask Chris if he remembers exactly what she said about that.
Stopped at Whole Foods. Got a great cup of coffee and picked up some Indian take-out, chips, a sandwich for Tope, pickles and some good cheese for Mom, who isn't coming now because she couldn't find a ticket for under $600.
Also stopped at Copenhagen to show Chris the chairs I like. He didn't like, or I should sa, doesn't think I should get the one I'd like.
Home to play with Meg and a nap for him since he didn't sleep well last night.
Margo read his MRI. No tear but some tendonopthy and bursitis.
She also said that because she was away when I was first started on the blood thinners there were tests that should have been done beforehand but now we'll have to wait until I'm off the coumadin ~ probably in about 5 months. Two tests were run for abnormalaties but both came back negative. I have to ask Chris if he remembers exactly what she said about that.
Stopped at Whole Foods. Got a great cup of coffee and picked up some Indian take-out, chips, a sandwich for Tope, pickles and some good cheese for Mom, who isn't coming now because she couldn't find a ticket for under $600.
Also stopped at Copenhagen to show Chris the chairs I like. He didn't like, or I should sa, doesn't think I should get the one I'd like.
Home to play with Meg and a nap for him since he didn't sleep well last night.
Margo read his MRI. No tear but some tendonopthy and bursitis.
Saturday, October 20, 2012
MRI
MRI for Chris's ankle. So frustrated I could scream. Between that and the non help today. I'll ask Margo to read it.
Brandy helps with what she thinks we need not what we say we need or ask for.
We eat wrong. Wheat rolls bought because they are better for us. They'll go into the garbage. I shouldn't use milk in a recipe that calls for milk because it is bad for me. No coffee, it restricts the blood flow.
I shouldn't wash my hair in the kitchen sink where i barely have to bend over. I should contort myself to do it in the bathroom.I kept having to ask for more shampoo because I was using too much. Actually I shouuldn't be doing it at all. So what if my head itches from five days of sweat. I want to sob because NOTHING I say makes her happy.
Chris dumped the Perier water because it was flat. Shouldn't have done that.
We have a lot of alachol in the garage fridge. Ice cream too!
Having someone help is great if they can get you what you ask for or do what you need done but hesitating because what you ask for is "wrong" is just too frustrating. Easier to be alone and cope. I've made all but one meal since getting home. Chris cant walk and moans constantly. He offers to get up but moans the whole time. He won't see a rhumotologist even though Dr Curtis told him his shoulder was probably destroyed because of RA (and most likely his other tears of tendons were a result of something like that too. He tears too often from doing NOTHING.
Brandy helps with what she thinks we need not what we say we need or ask for.
We eat wrong. Wheat rolls bought because they are better for us. They'll go into the garbage. I shouldn't use milk in a recipe that calls for milk because it is bad for me. No coffee, it restricts the blood flow.
I shouldn't wash my hair in the kitchen sink where i barely have to bend over. I should contort myself to do it in the bathroom.I kept having to ask for more shampoo because I was using too much. Actually I shouuldn't be doing it at all. So what if my head itches from five days of sweat. I want to sob because NOTHING I say makes her happy.
Chris dumped the Perier water because it was flat. Shouldn't have done that.
We have a lot of alachol in the garage fridge. Ice cream too!
Having someone help is great if they can get you what you ask for or do what you need done but hesitating because what you ask for is "wrong" is just too frustrating. Easier to be alone and cope. I've made all but one meal since getting home. Chris cant walk and moans constantly. He offers to get up but moans the whole time. He won't see a rhumotologist even though Dr Curtis told him his shoulder was probably destroyed because of RA (and most likely his other tears of tendons were a result of something like that too. He tears too often from doing NOTHING.
Friday, October 19, 2012
Long Day
Brandy is really helping us out. She went shopping tonight and then made some great salads. It is so nice to have Megan here. She is constantly happy and laughing.
Talked to mom and Sharon. Mom is probably coming next week after Bran leaves. Ann and the kids are coming after Dr. Mikes wedding on Nov. 10th in DC and staying for Thanksgiving.
Really tired and needing pain meds today.
Talked to mom and Sharon. Mom is probably coming next week after Bran leaves. Ann and the kids are coming after Dr. Mikes wedding on Nov. 10th in DC and staying for Thanksgiving.
Really tired and needing pain meds today.
Black & Blue!
My arms are a mess. The nurse who got me ready for surgery couldn't get the IV in then the one they put in my right arm went bad.
Then the new one in the left arm fell out. What a mess.
On a good note the Lovenox shots in the stomach don't seem to be bruising so bad this round.
Thursday, October 18, 2012
Hmmmm
Apparently I was coherent enough to make a journal entry but I don't remember doing it or getting out of bed on Tuesday at all. .
I was moved out of the ICU around midnight and over to what they called a step down unit on the 4th floor. Had a roommate who has diabetes and had a liver infection. She went home on Wednesday. Her name is Sharon and she calles her liver Cynthia. LOL
Chris, Brandy, Megan and Brye spent most of Wednesday with me and I remember little of the day. I do remember my 3rd IV fslling out in the morning and I refused to let them put in another. Got 10mg of Norco around 10AM and another 10 in the evening. Nothing for pain on Thursday because it only hurt when I moved.
Saw both Malve and Marks on Wed (don't remember Tues at all) and they agreed I could stay until Thurs to get some good rest. Great bed that allowed me to sit up and sleep. .
Little bit of a rough night. They moved someone in at about midnight and back out by early morning. Of course they turned on all the lights and the tv. Even the Norco didn't keep me asleep. .
Released around 2:00. Chris dropped me off and went to see Dr Stanley. He probably tore his achalies tendon. So what's new... Spent the afternoon sitting outside listening to Brandy tell me I HAD to keep my oxygen on even lf my SAT rate was 99.
I was moved out of the ICU around midnight and over to what they called a step down unit on the 4th floor. Had a roommate who has diabetes and had a liver infection. She went home on Wednesday. Her name is Sharon and she calles her liver Cynthia. LOL
Chris, Brandy, Megan and Brye spent most of Wednesday with me and I remember little of the day. I do remember my 3rd IV fslling out in the morning and I refused to let them put in another. Got 10mg of Norco around 10AM and another 10 in the evening. Nothing for pain on Thursday because it only hurt when I moved.
Saw both Malve and Marks on Wed (don't remember Tues at all) and they agreed I could stay until Thurs to get some good rest. Great bed that allowed me to sit up and sleep. .
Little bit of a rough night. They moved someone in at about midnight and back out by early morning. Of course they turned on all the lights and the tv. Even the Norco didn't keep me asleep. .
Released around 2:00. Chris dropped me off and went to see Dr Stanley. He probably tore his achalies tendon. So what's new... Spent the afternoon sitting outside listening to Brandy tell me I HAD to keep my oxygen on even lf my SAT rate was 99.
Tuesday, October 16, 2012
Had the biopsy
Dr said my lung looks abnormal but that is what he expected. Pathology reports in three to six days.
I hurt like crazy. Morphine ever two hours and still in ICU on Tuesday night.
I was ok until I got up to go to the bathroom. Now I hurt all over.
Sunday, October 14, 2012
Quiet Sunday
Surgery tomorrow.
Brandy is here with Megan. Chris's appointment ended up being canceled just as I was turning out onto 1560.
Poor Megan HATES the truck. Too loud for her.
Chris and Brandy went shopping and I had Megan asleep on me when Tanya came over to borrow an egg. Her kids LOVED Megan and stayed to play.
Brye stopped to meet Megan.
I wish Brandy and Chris would stop telling me to put my oxygen on. I hate the damn canella and I'm fine when sitting still. I just want a little time without the plastic up my nose. Making me a little crazy.
Brandy is here with Megan. Chris's appointment ended up being canceled just as I was turning out onto 1560.
Poor Megan HATES the truck. Too loud for her.
Chris and Brandy went shopping and I had Megan asleep on me when Tanya came over to borrow an egg. Her kids LOVED Megan and stayed to play.
Brye stopped to meet Megan.
I wish Brandy and Chris would stop telling me to put my oxygen on. I hate the damn canella and I'm fine when sitting still. I just want a little time without the plastic up my nose. Making me a little crazy.
Saturday, October 13, 2012
Biopsy on Monday
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.
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.
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.
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