We are home! Everything went extremely well this morning. The initial scope in my throat was to be done without provocation of aspergillus. The 2nd scope in my throat was to be done with provocation of aspergillus to see exactly what muscles and/or vocal cords were involved in closing off my airway. Since nothing seems to go as planned, it didn't! The doctor was able to see what was engaging in my throat through a series of tests without provocation. He felt the risk would not add enough information to change our course of action. So the great news is that I didn't have to stop breathing! The next step is to address the vocal cord/muscles in my throat. The goal from this is simple: Since we can't avoid anaphylaxis, we are hoping to keep a small airway open.
Another bit of confirmed good news is that my body is healing. Yes, it is actually healing. My bone marrow has quit overproducing, and I am very stable. It's gooooooooood. Mega answered prayer!
Wednesday
D-Day in the Morning - March 18, 2009
In a few short hours Mike and I will head over to Seattle for my little throat procedure. Actually, I'm remarkably calm considering that they are going to inject aspergillus in my body and cause my airway to close. I'm either in denial or being prayed for. Thanks...I know you are praying for me. :-) Will you specifically pray that this procedure will work in helping to diagnose what to do in my throat to keep my airway open? Also, please pray that my body will respond quickly and fully to the epinephrine when they attempt to stop the anaphylaxis. Finally, please pray for peace. It is really anxiety provoking when your airway closes off. The sensation of trying to draw a breath and being unable to move air is pretty bad. So, I would kind of like to have an out of body experience and not "really" be there! Unfortunately I don't have a choice. Pray for me to keep my focus on God and what He can do instead of what is happening in my throat. We will update the blog when we return home. Love to all!
Tuesday
Just So You Know Mar. 10, 2009
They won't be cutting the muscles in my throat or taking out a vocal cord on the 19th. It is purely diagnostic. I thought I better clarify that after several people were amazed at my willingness to "go under the knife" without anesthesia. I'm not!! I say "B. L. T. C." (Better Living Through Chemistry). Knock me out, baby! This procedure is being used to identify what to cut/remove/ignore. The surgery will come later when I am well out of anaphylaxis and can go under general anesthesia.
By the way, Noah is attending Burley Christian School and absolutely loves it. Wahoo!
A Mixed Bag - Feb. 28, 2009
We received the biopsy results from Noah's little stomach surgery on Monday and we have been processing...the results weren't too encouraging. Since Mike has access to the Madigan Army Hospital computer system, he had looked up Noah's results before the appointment. It said something about "chronic gastro blah, blah, blah", but it didn't seem too threatening to either one of us. We were scratching our heads a bit though wondering how an 11 year old could have anything "chronic". At the appointment, the Doctor said that the biopsy results, in conjunction with the other tests, may indicate Crohn's Disease or Ulcerative Colitis. Noah is down 20 plus pounds and continues to lose weight. This is becoming a major concern for the Doctor. Some special wham-a-dime blood test was taken and sent off to a lab somewhere in America (I assume). Of course this blood test is not the end all, be all diagnosis, it is merely an indicator if they are barking up the right tree. Personally, I want the barking to stop. More testing is in Noah's future; CT Scan, Colonoscopy (yuck) and some other fun stuff. I'm still scratching my head and not really believing anything could ACTUALLY be wrong with him. It would be great if this was all some weird, funky viral attack...oh yeah...it is...I can actually name the viral attacker...Satan! I'm pretty much over him, and want to see him destroyed.
On the flip-side, Aaron had his repeat IEP and he qualified for every service available. So now that little guy is going to school every day and has a team of teachers. Let me say that again, "he has a team of teachers!" It is good. I am so glad he is getting services from 3 specialists at school. He LOVES it. He absolutely loves it. All of his repeat testing showed again that his intelligence is in tact, meaning that they are going to try to find a way to reach beyond the disability to get to his intelligence and not just teach him life skills.
D-day for me and my throat surgery is March 19th. Party on, Garth. I'm sure my excitement is contagious. The refresher of the procedure is this: they are going to induce anaphylaxis in order to see what muscles need to be cut in my neck to keep from closing off my airway. I get to go in with my wits about me and they won't let me alter my mental status in anyway...and I think that is just plain mean. Hello? A little Valium here please! But, no way, because it will interfere with the meds used to bring me out of anaphylaxis. I guess I need to look at the BIG PICTURE here, don't I? Anyway, I mentioned to Mike last night that I was "nervous" and "dreading" this, and he was so compassionate and understanding as he told me to "suck it up because I'm going in anyway." Humph. I was looking for a little sympathy about the process, and he was looking at the end result of my airway staying open. I guess that pretty much sums up the difference between men and women!
So that's the scoop. Some good, some not so good...a.k.a. "a mixed bag".
On the flip-side, Aaron had his repeat IEP and he qualified for every service available. So now that little guy is going to school every day and has a team of teachers. Let me say that again, "he has a team of teachers!" It is good. I am so glad he is getting services from 3 specialists at school. He LOVES it. He absolutely loves it. All of his repeat testing showed again that his intelligence is in tact, meaning that they are going to try to find a way to reach beyond the disability to get to his intelligence and not just teach him life skills.
D-day for me and my throat surgery is March 19th. Party on, Garth. I'm sure my excitement is contagious. The refresher of the procedure is this: they are going to induce anaphylaxis in order to see what muscles need to be cut in my neck to keep from closing off my airway. I get to go in with my wits about me and they won't let me alter my mental status in anyway...and I think that is just plain mean. Hello? A little Valium here please! But, no way, because it will interfere with the meds used to bring me out of anaphylaxis. I guess I need to look at the BIG PICTURE here, don't I? Anyway, I mentioned to Mike last night that I was "nervous" and "dreading" this, and he was so compassionate and understanding as he told me to "suck it up because I'm going in anyway." Humph. I was looking for a little sympathy about the process, and he was looking at the end result of my airway staying open. I guess that pretty much sums up the difference between men and women!
So that's the scoop. Some good, some not so good...a.k.a. "a mixed bag".
Guru News - Jan. 21, 2009
Dr. Greenberger, the guru for Allergic Broncopulmanary Aspergellois (ABPA) called today with my test results. We are still sort of scratching our heads. My tests were positive for ABPA except for one that can be a false negative from the use of steroids. At the time of the test, I was taking 80 mg. That is a HIGH dose of steroids. The test was still positive, but it was a very low positive--so it is considered negative. Are you scratching your heads yet? Anyway, all things considered, the guru says I need more treatment. My CT Scan showed a stricture in my throat which is actually good news. I may not be experiencing true anaphylaxis in the sense that my entire airway closes, rather only a portion of it does. (i.e. a particular muscle) Weird, wacky, and possibly treatable in keeping my airway open. He is not sure if it is the only muscle involved, and so that will require more testing. Fortunately, I will be able to do that testing over at the University of WA. Much to my delight, they already have my records. Back to the head stratching part, I don't have a referral from our insurance to go there so I started the process today of begging for one of those. Madigan Army Hosp. does not have the specialty to treat for this. But lets go back to some good news again. Dr. Greenberger said that my lungs are not totally trashed. Damage to them seems to be halted for the time being and with more treatment, my lungs may be keepers! Yippee! The final bit of icing on the cake for the eveing is this; Mike's trip has been delayed for almost a week. A double yippee on that one!
So, that's it for now. It sure did take a while to get the final results but making progress in the direction of long-term management feels so good!
So, that's it for now. It sure did take a while to get the final results but making progress in the direction of long-term management feels so good!
An Update to the Update or... Jan. 18, 2009
whatever....anyway. Some prayers were answered and we have some more news to share.
First of all, Aaron is running around like he was never down with a virus or that he was almost fodder for the orthopedic surgeon. His leg is healing great, and he played basketball yesterday. He had zero complaints..until we were snuggling on the couch last night. Then he needed a little extra TLC from Mom!
Second, we received the contract from the Attorney. What ever was holding things up seems to have broken through. We are relieved.
Onto new info: Duty calls. Mike is leaving soon. This is a new mission he will be going on that came up out of the blue. He will be on this mission until he changes jobs in July or August. Unfortunately, due to the nature of the mission, he will not be able to have contact with us during the entire time he is deployed. That is the hardest part about this particular deployment. As some of you military personnel know, I cannot give you the exact dates. It's against the "rules". Basically, as Mike explained to some of my siblings yesterday, he will just sort of disappear. So, he is leaving very soon. Sigh...it just never gets easier saying goodbye for these deployments.
I know some of you are thinking "Ack! But what about your health, what about the house, what about, what about, what about??!!" Yeah...I dunno nothing. The older I get the more I realize the truth to God's verse that says "His ways are not our ways"...coz if I had MY way, let me just tell you a thing or two....
Nah, better keep a lid on that one. Well, that's the scoop. Thanks for the prayers. Keep 'em coming! Clearly we are a vast chasm of need here.
First of all, Aaron is running around like he was never down with a virus or that he was almost fodder for the orthopedic surgeon. His leg is healing great, and he played basketball yesterday. He had zero complaints..until we were snuggling on the couch last night. Then he needed a little extra TLC from Mom!
Second, we received the contract from the Attorney. What ever was holding things up seems to have broken through. We are relieved.
Onto new info: Duty calls. Mike is leaving soon. This is a new mission he will be going on that came up out of the blue. He will be on this mission until he changes jobs in July or August. Unfortunately, due to the nature of the mission, he will not be able to have contact with us during the entire time he is deployed. That is the hardest part about this particular deployment. As some of you military personnel know, I cannot give you the exact dates. It's against the "rules". Basically, as Mike explained to some of my siblings yesterday, he will just sort of disappear. So, he is leaving very soon. Sigh...it just never gets easier saying goodbye for these deployments.
I know some of you are thinking "Ack! But what about your health, what about the house, what about, what about, what about??!!" Yeah...I dunno nothing. The older I get the more I realize the truth to God's verse that says "His ways are not our ways"...coz if I had MY way, let me just tell you a thing or two....
Nah, better keep a lid on that one. Well, that's the scoop. Thanks for the prayers. Keep 'em coming! Clearly we are a vast chasm of need here.
Bad Poetry - Dec. 28, 2008
We are stuck...
in slushy yuck,
chains are on the truck,
there is so much muck,
that we have had no luck,
so...we are still stuck.
Okay, I got up at 3:00 AM. I'm still on Indy time and can't seem to shake it. I fall asleep at 8:30 every night too. It's annoying. Anyway, how about that poetry in the wee hours of the night, hey?! Speaking of annoying..that might just qualify.
Anyway, I would love to see you all at church today, but we can't get out. Mike won't be teaching the Adult Education class for us either. As the weather has warmed, the tires are sinking all the way in and just sliding everywhere...in 4 wheel drive, with chains. No one is coming or going off of our mountain. Yesterday, the neighbors rallied and hired a snow plow to come in and clear the road for us. Sadly, he came ill prepared for our hill too. He just kept sliding and spinning. No wonder the county doesn't want to take over maintenance of our private road! It is way too steep. So today the plan is "hand to hand combat". The men in the neighborhood are all going to attack the road with shovels. This could take a while...our private road is a mile long...
Well that's the scoop. Sorry we won't be there. I would have loved to see everyone.
in slushy yuck,
chains are on the truck,
there is so much muck,
that we have had no luck,
so...we are still stuck.
Okay, I got up at 3:00 AM. I'm still on Indy time and can't seem to shake it. I fall asleep at 8:30 every night too. It's annoying. Anyway, how about that poetry in the wee hours of the night, hey?! Speaking of annoying..that might just qualify.
Anyway, I would love to see you all at church today, but we can't get out. Mike won't be teaching the Adult Education class for us either. As the weather has warmed, the tires are sinking all the way in and just sliding everywhere...in 4 wheel drive, with chains. No one is coming or going off of our mountain. Yesterday, the neighbors rallied and hired a snow plow to come in and clear the road for us. Sadly, he came ill prepared for our hill too. He just kept sliding and spinning. No wonder the county doesn't want to take over maintenance of our private road! It is way too steep. So today the plan is "hand to hand combat". The men in the neighborhood are all going to attack the road with shovels. This could take a while...our private road is a mile long...
Well that's the scoop. Sorry we won't be there. I would have loved to see everyone.
A Christmas Miracle - Dec. 20, 2008
It feels like a Christmas miracle...we are finally home. Last Saturday, (yes, a week ago) we packed the 5th wheel in Mitchell to head home. After 3 consecutive events occurred, we felt like that was God saying it was time to go home. One of the major things being that Dr. Greenberger decided to do his follow-up appt. with me via phone conference to go over the results. A face to face appt. was not available until February. That is fine, because we understand it was an act of God for me to see him in the first place. Dr. Greenberger wants me to be seen by his colleague in Seattle who trained with him. This doctor can see me next week. Also, the weather in Seattle changed and the aspergillus counts plummeted. Not just a little bit, but a serious freeze. Finally, we felt like Dr. Greenberger would have good advice about what to do, and he said I should try to go home. So, all three things seem to lead me here...like the Israelites....through the Red Sea...with a wall of snow and ice on every side...opps, I mean a wall of water on every side. Awww...you get the picture. That was a little tongue and cheek, but I'll tell you what, it did take us a full week to drive home! The weather was atrocious.
Instead of the mere 2200 miles, we drove a staggering 3100 miles to skirt storms and bypass closed interstates. Two nights ago, we were in white out conditions and literally lost the road. We did make it home last night. The road conditions we treacherous from Utah to here. It took over 3 hours to go 16 miles at one point. Mike did a great job driving.
We were so eager to get home, but a few bits of stress just kept coming at us...like the flu hit in the truck for the final 6 hours...and we left our keys in the 5th wheel after it was unhooked and parked. That meant we all had to drive back to the 5th wheel to retrieve keys after we had finally arrived home. Talk about deflating! But then.....we came inside our house, and what did our wondering eyes perceive? A beautiful Christmas tree and decorations!!!! Two little elves by the names of Cindy Lester and Kristi Dormaier set up a BEAUTIFUL tree for us to come home too. Not only that, but they put food in our fridge. Oh, I can't tell you all how awesome that was to come home to!! The kids were going nuts.
So, that is the long and short version. We are so happy to be home for Christmas!
Instead of the mere 2200 miles, we drove a staggering 3100 miles to skirt storms and bypass closed interstates. Two nights ago, we were in white out conditions and literally lost the road. We did make it home last night. The road conditions we treacherous from Utah to here. It took over 3 hours to go 16 miles at one point. Mike did a great job driving.
We were so eager to get home, but a few bits of stress just kept coming at us...like the flu hit in the truck for the final 6 hours...and we left our keys in the 5th wheel after it was unhooked and parked. That meant we all had to drive back to the 5th wheel to retrieve keys after we had finally arrived home. Talk about deflating! But then.....we came inside our house, and what did our wondering eyes perceive? A beautiful Christmas tree and decorations!!!! Two little elves by the names of Cindy Lester and Kristi Dormaier set up a BEAUTIFUL tree for us to come home too. Not only that, but they put food in our fridge. Oh, I can't tell you all how awesome that was to come home to!! The kids were going nuts.
So, that is the long and short version. We are so happy to be home for Christmas!
The Guru has Spoken - Dec. 12, 2008
Yesterday was the big day for me to finally be seen by the world's expert on ABPA. My appointment took an astounding 5 hours. Ironically, we could have used more time. Mike flew in from WA and drove me up to Northwestern University Medical Center in Chicago. We were fully prepared with our list of questions about prognosis and treatment, but we never got to a single one of them in the 5 hours. Basically, Dr. Greenberger did testing to confirm the diagnosis. This is the only facility in the world that does the definitive blood test for ABPA. To be diagnosed with ABPA, there are several criteria, and this blood test is the last one. All the other testing was repeated yesterday and was positive for it. The blood testing is a 4 step process and won't be back for 2 weeks. At that point I will have a follow up appointment with Dr. Greenberger, and then we will get to some of those looming questions.
We really don't have an answer yet for anything. I think that is the long and short version of the appointment! The good news from yesterday is that I get to discontinue one of my medications (new tally: 22 meds). Party on, Garth! The cunundrum is that I don't fit stererotypical anaphylaxis. Dr. Greenberger isn't sure if it is a stricture in my throat or my vocal cords when I am exposed to aspergillus. This means I get to go see another doctor, ENT, to try to figure this out. He did say my case is "complicated".....how encouraging coming from the world's leading expert on aspergillus diseases. Yikes.
We did receive a bit of wonderful news about the attorney that we wanted to represent us in our case with the ridgevent installation. He is taking our case! This is awesome because he can literally pick and choose his cases. It took several months of review before we were given this committment. Answered prayer.
So, that is the update. Thanks every one for the text messages and phone messages yesterday letting me know you were thinking of us on our journey to the aspergillus guru. It was a monumental day, we just don't have the information from it yet to share with you all.
We really don't have an answer yet for anything. I think that is the long and short version of the appointment! The good news from yesterday is that I get to discontinue one of my medications (new tally: 22 meds). Party on, Garth! The cunundrum is that I don't fit stererotypical anaphylaxis. Dr. Greenberger isn't sure if it is a stricture in my throat or my vocal cords when I am exposed to aspergillus. This means I get to go see another doctor, ENT, to try to figure this out. He did say my case is "complicated".....how encouraging coming from the world's leading expert on aspergillus diseases. Yikes.
We did receive a bit of wonderful news about the attorney that we wanted to represent us in our case with the ridgevent installation. He is taking our case! This is awesome because he can literally pick and choose his cases. It took several months of review before we were given this committment. Answered prayer.
So, that is the update. Thanks every one for the text messages and phone messages yesterday letting me know you were thinking of us on our journey to the aspergillus guru. It was a monumental day, we just don't have the information from it yet to share with you all.
Good News! - Dec. 1, 2008
Wow, that felt great to type "good news". We have a major answer to prayer. I have finally been given my appointment with Dr. Greenberger at Northwestern University. He is THE guru dealing with ABPA and associated diseases. I know some of you are medical geeks and are curious about him, so here is a link to who he is:
http://www.medicine.northwestern.edu/scripts/bio.pl?pid=290
Remember the old commercial about E.F. Hutton? You know, "When E.F. Hutton talks, people listen."? Well, that is exactly who Dr. Greenberger is when it comes to ABPA. I am so unbelievable thankful that I have an appointment with him, in person, instead of him just advising care through the Madigan doctors. It is Dec.11th at 1:30. The initial appointment is 4 hours long with the potential for an overnight. I feel like I will be able to be given information and help from someone with experience that you can't get from a text book. I am one seriously happy camper about this appointment!
Another answer to prayer came in the way of snow today. It is a light dusting, but snow just the same. So here is my motto..."When there is snow, aspergillus won't grow!' Catchy, don't you think?
So, those are my happy news flashes. Thank you for keeping the boys and myself in your prayers. We need it. We are still earnestly asking God for healing. Also, we want the legal aspect of this to be handeled correctly and in our favor! Another thing that has been especially difficult for me the last couple of days is homesickness. Maybe because I see Dec. 1st on the calendar, and "there is no place like home for the holidays", but I sure am trying shrink that homesickness down and build up my thankfulness. I could just use a bit more prayer for it though because it keeps sneaking up on me.
Okay, my progress seems to be at a snails pace, or glaicial speed, or actually inperceptable at times; but I think I am a little bit stronger...at least that's what I keep striving for. So just keep praying!
http://www.medicine.northwestern.edu/scripts/bio.pl?pid=290
Remember the old commercial about E.F. Hutton? You know, "When E.F. Hutton talks, people listen."? Well, that is exactly who Dr. Greenberger is when it comes to ABPA. I am so unbelievable thankful that I have an appointment with him, in person, instead of him just advising care through the Madigan doctors. It is Dec.11th at 1:30. The initial appointment is 4 hours long with the potential for an overnight. I feel like I will be able to be given information and help from someone with experience that you can't get from a text book. I am one seriously happy camper about this appointment!
Another answer to prayer came in the way of snow today. It is a light dusting, but snow just the same. So here is my motto..."When there is snow, aspergillus won't grow!' Catchy, don't you think?
So, those are my happy news flashes. Thank you for keeping the boys and myself in your prayers. We need it. We are still earnestly asking God for healing. Also, we want the legal aspect of this to be handeled correctly and in our favor! Another thing that has been especially difficult for me the last couple of days is homesickness. Maybe because I see Dec. 1st on the calendar, and "there is no place like home for the holidays", but I sure am trying shrink that homesickness down and build up my thankfulness. I could just use a bit more prayer for it though because it keeps sneaking up on me.
Okay, my progress seems to be at a snails pace, or glaicial speed, or actually inperceptable at times; but I think I am a little bit stronger...at least that's what I keep striving for. So just keep praying!
Perplexed but Breathing - Nov. 26, 2008
Anne here...I just wanted to let you know that I am breathing. So, this is good. Thanks for the prayers. We still don't know where the aspergillus exposure is coming from, but Mike, his Dad and Lorraine have done every thing that they could to remediate any source in the home again. I did have a problem on Sunday when my family gathered together for a Thanksgiving dinner. My airway became swollen and eventually I had to take the epi-pen to avoid full anaphylaxis. All we could speculate was that it was on clothing, shoes, coats, ect.... We don't know if that has just caused my histamine cells to become so hypersensitive that they are reacting to even a few spores in my environment. We do know that this can happen and will take a few days to settle back down. However, this is very strange what is going on right now. I am really trapped/isolated in a filtered room. Now don't get me wrong...I am thankful for the filtered room!! But, we are very preplexed. We are also concerned and would like to find the exact source of exposure. Grey, fuzzy areas don't go over too well when it applies to living or dieing.
On a happy note, (yes, I still have my joy!), I've had 4 of my dearest friends come to visit me in Mitchell, Indiana. One from Pittsburgh, Crawfordsville, Virginia and Washington! They didn't all come at once, but spead it out and what a wonderful treat that has been. Mike and I have joked that I really must be on the brink of death since I'm seeing people I haven't seen in years! I love seeing my them; it has been awesome.
Mike is here for the week of Thanksgiving. Once again, his timing couldn't be any more perfect. Another praise to our sweet Jesus!!
On a happy note, (yes, I still have my joy!), I've had 4 of my dearest friends come to visit me in Mitchell, Indiana. One from Pittsburgh, Crawfordsville, Virginia and Washington! They didn't all come at once, but spead it out and what a wonderful treat that has been. Mike and I have joked that I really must be on the brink of death since I'm seeing people I haven't seen in years! I love seeing my them; it has been awesome.
Mike is here for the week of Thanksgiving. Once again, his timing couldn't be any more perfect. Another praise to our sweet Jesus!!
Important - Nov. 25, 2008
Hi Everyone,
Anne has had an extremely unstable morning in and out of anaphylaxis needing multiple epi-pens and all medications available. Disturbingly, there is no clear aspergillus exposure causing her airway to close off. We have always been able to pin point the exact cause. Anne's breathing is very precarious. Please pray for her and for wisdom to find the source of exposure. She is in isolation in the filtered room. Staying in a hospital is the worst place for her to be. Remember that hospitals harbor aspergillus in their ventilation systems. Keeping her out of the hospital is a key priority. We don't know what has changed and we are fearful. Thank you for your prayers.
God Bless,
Mike & Anne
Anne has had an extremely unstable morning in and out of anaphylaxis needing multiple epi-pens and all medications available. Disturbingly, there is no clear aspergillus exposure causing her airway to close off. We have always been able to pin point the exact cause. Anne's breathing is very precarious. Please pray for her and for wisdom to find the source of exposure. She is in isolation in the filtered room. Staying in a hospital is the worst place for her to be. Remember that hospitals harbor aspergillus in their ventilation systems. Keeping her out of the hospital is a key priority. We don't know what has changed and we are fearful. Thank you for your prayers.
God Bless,
Mike & Anne
Plugging Along - Nov. 15, 2008
Sorry it has been almost two weeks since I updated. I really didn't feel like I had anything significant to say, so I didn't want to waste your time. But, I thank you for checking up on me and scolding me for not writing something sooner! (You are very caring.)
The progress seems to wax and wane, but overall I am improving. I have been able to drive the last couple of days and that is pure bliss to have some independence again! I am currently trying to reduce my steroids, but to date, I have not been able too. In fact, every attempt has been met with a larger dose the following day to get my throat and airway cooperating again. It is a bit frustrating. My body cannot seem to handle the fluid retention any longer from the steroids either. I can no longer wear my rings and I have to pound my shoes on my feet. Oh, yeah....and my cheeks...on my face.......they are just a wee bit LARGEEEEEEEE. No more hiding the prednisone from the public eye. That does bum me out a bit. I enjoyed a little bit of privacy on that front.
Some of you were asking exactly what I wanted you to pray for, so I would be more than willing to give you a list!!!!
I would like healing, of course! Also, I want to come off the steroids or at least get to reduce them. A good freeze here would help a lot to lower the aspergillus count. Also, we are still waiting on the insurance and approval to send me to the Allergic Bronchopulmanary Aspergellosis guru doctor at Northwestern University. Finally, the legal stuff is out of our hands and we are waiting. So, that's my list.
1. Reduce Meds.
2. Hard Freeze
3. Insurance Approval
4. Legal Progess
You know, I cannot begin to express how much I feel and cherish your prayers. Thank you so much.
The progress seems to wax and wane, but overall I am improving. I have been able to drive the last couple of days and that is pure bliss to have some independence again! I am currently trying to reduce my steroids, but to date, I have not been able too. In fact, every attempt has been met with a larger dose the following day to get my throat and airway cooperating again. It is a bit frustrating. My body cannot seem to handle the fluid retention any longer from the steroids either. I can no longer wear my rings and I have to pound my shoes on my feet. Oh, yeah....and my cheeks...on my face.......they are just a wee bit LARGEEEEEEEE. No more hiding the prednisone from the public eye. That does bum me out a bit. I enjoyed a little bit of privacy on that front.
Some of you were asking exactly what I wanted you to pray for, so I would be more than willing to give you a list!!!!
I would like healing, of course! Also, I want to come off the steroids or at least get to reduce them. A good freeze here would help a lot to lower the aspergillus count. Also, we are still waiting on the insurance and approval to send me to the Allergic Bronchopulmanary Aspergellosis guru doctor at Northwestern University. Finally, the legal stuff is out of our hands and we are waiting. So, that's my list.
1. Reduce Meds.
2. Hard Freeze
3. Insurance Approval
4. Legal Progess
You know, I cannot begin to express how much I feel and cherish your prayers. Thank you so much.
Progress - Nov. 6, 2008
Monday turned out to be a stellar day all around. Not only was I given the good biopsy report, but a blood pressure medication was eliminated that had a severe interaction with my fungal chemo. Each day since then, I have become more clear headed, stronger, and I've had zero, let me repeat that...ZERO....nausea for 3 days! It feels like a full on miracle. In fact, I'd put it right up there with the lions mouths being closed while Daniel was in the lion's den! For those of you who can't make the leap...I'm Daniel, the lions are the nausea, and God shut their mouths, a.k.a. stopped the nausea. No....the nausea wasn't going to kill me...it just feels like that kind of a miracle to not be green all the time! In fact, food is starting to taste good!!
Another bit of progress, (for those of you who know me well will be relieved at this one), I am learning to address any sign of a reaction immediately. Some of you may be thinking, "Duh!", but that doesn't come so easy for me to do. Usually it means disrupting whatever is going on, no matter where we are, leaving my environment and starting through the medications that I am carrying with me. I am the first one to notice when I begin to react in an environment--well before anyone else can physically tell--yet I have tried to ignore my symptoms just hoping and praying that they would disappear so that I didn't have to disrupt whatever was going on or whoever was with me...coz I feel like a spectacle. But over the last few weeks, I have stopped that nonsense and started sounding the alarm right away. That has avoided full anaphylaxis at least 3-4 times and the use of epinephrine shots. I like that! I also like avoiding my throat closing completely, turning blue and watching the terror on the kids faces. They are beginning to relax a little bit and I can see it in them. It is goooooooooood! So, if you happen to be with me, and I say "we've got to go", I mean NOW. It doesn't matter what we are doing...literally...I just have to get out of that environment and start the protocol of medications in my purse.
Yesterday my sister and brother-in-law stopped by after they had driven down to southern Indiana to celebrate her ?? birthday the day prior. (I'd tell you how old she is, because she looks fabulous, but she'd have my head). We went to Spring Mill State Park, my first outing and also the place where Mike and I got married, and strolled the path along the creek at the village. I was fine until I had to sit from that EXHAUSTING STROLL (errrrr!). There were too many pretty leaves all falling from the trees dropping aspergillus spores around us. I could feel it in my throat. I inconvenienced everyone and we left immediately, taking drugs from my kit (not the fun kind ) and showering ASAP when we got home. The good news is that I was willing to ruin every ones' day at the park and I didn't go into anaphylaxis. There is no bad news. Now isn't that progress?! Oh...the bad news is...one of my kits was missing a restock of medication and my sister was about to take my head off any way...so I guess I should tell you her age since I'm already in trouble....nah.
So, I just wanted to give a praise report. The drug interaction has stopped and that has made a huge difference. My tremors are at least 75% less, so I am easier to look at without feeling sorry for...yea!...my nausea is completely gone, my head is clear, and I'm attempting to take some strolls. I am still in a mask pretty much all the time until we get a good freeze here too, but the spore count is significantly less than in WA. I'm glad I got to share some happy news!! I can tell I am being prayed for. Pleeeeeease don't stop! (Am I just one exclamation mark after another or what?!)
Another bit of progress, (for those of you who know me well will be relieved at this one), I am learning to address any sign of a reaction immediately. Some of you may be thinking, "Duh!", but that doesn't come so easy for me to do. Usually it means disrupting whatever is going on, no matter where we are, leaving my environment and starting through the medications that I am carrying with me. I am the first one to notice when I begin to react in an environment--well before anyone else can physically tell--yet I have tried to ignore my symptoms just hoping and praying that they would disappear so that I didn't have to disrupt whatever was going on or whoever was with me...coz I feel like a spectacle. But over the last few weeks, I have stopped that nonsense and started sounding the alarm right away. That has avoided full anaphylaxis at least 3-4 times and the use of epinephrine shots. I like that! I also like avoiding my throat closing completely, turning blue and watching the terror on the kids faces. They are beginning to relax a little bit and I can see it in them. It is goooooooooood! So, if you happen to be with me, and I say "we've got to go", I mean NOW. It doesn't matter what we are doing...literally...I just have to get out of that environment and start the protocol of medications in my purse.
Yesterday my sister and brother-in-law stopped by after they had driven down to southern Indiana to celebrate her ?? birthday the day prior. (I'd tell you how old she is, because she looks fabulous, but she'd have my head). We went to Spring Mill State Park, my first outing and also the place where Mike and I got married, and strolled the path along the creek at the village. I was fine until I had to sit from that EXHAUSTING STROLL (errrrr!). There were too many pretty leaves all falling from the trees dropping aspergillus spores around us. I could feel it in my throat. I inconvenienced everyone and we left immediately, taking drugs from my kit (not the fun kind ) and showering ASAP when we got home. The good news is that I was willing to ruin every ones' day at the park and I didn't go into anaphylaxis. There is no bad news. Now isn't that progress?! Oh...the bad news is...one of my kits was missing a restock of medication and my sister was about to take my head off any way...so I guess I should tell you her age since I'm already in trouble....nah.
So, I just wanted to give a praise report. The drug interaction has stopped and that has made a huge difference. My tremors are at least 75% less, so I am easier to look at without feeling sorry for...yea!...my nausea is completely gone, my head is clear, and I'm attempting to take some strolls. I am still in a mask pretty much all the time until we get a good freeze here too, but the spore count is significantly less than in WA. I'm glad I got to share some happy news!! I can tell I am being prayed for. Pleeeeeease don't stop! (Am I just one exclamation mark after another or what?!)
Pins & Needles - Nov. 3, 2007
First, thanks for the messages today. I have been sitting on pins and needles waiting on the doctor to call. It has been very difficult to concentrate and teach school. I am so thankful my mother-n-law is the glue keeping the school day flowing. She taught school for 33 years and just told me she couldn't believe what we do in one day...it is enough for a week! That makes me feel awesome. I was afraid I was actually behind since the kids missed a week of school!!
The doctor just called. He said that the abnormalities in my bone marrow is not something that they routinely see at Madigan Army Hospital, and it didn't fit into any good box for a diagnosis either. That is why he sent it onto Chicago/Northwestern University. At Northwestern, they said that while my bone marrow isn't normal, they have seen this before and that it does fit into a diagnosis. It is not cancer. Thank you Jesus!!! It is actually a response from my bone marrow overproducing in an attempt to keep my body alive. They think that if I can eliminate the aspergillus in my body via the fungal chemo (last day Jan. 22nd but who's counting?) and can avoid anaphylaxis triggers, my bone marrow should simmer down. They are going to repeat the bone marrow biopsy again in March. Whew! What a relief.
Now that the biopsy results are done, I want to reach for a goal that would feel so good...I want to be strong enough to drive again. It is so frustrating to be so weak and shakey that I can't drive. It feels like forever since I've had any independence...or even had the stamina to seek the independence. I'm out of a wheel chair and that's progress. I'm walking around the house without falling over and that's progress. I sooooo want to feel good enough to just go to the store for something if I needed it...to be able to get behind a wheel and drive. So, now that is my prayer request for today. Little things like driving or even walking out to check the mailbox take on a whole new meaning when you can't do any of them.
Mike is home in WA. He left Indiana on Saturday. We will miss him terribly. The boys and I are staying put in Mitchell this week because I am so weak. We may go up to Indy over the weekend, but we have not made definite plans yet. I do have a ride from Dawn lined up because I'm ....let me think here....oh yeah....too weak to drive....but God does answer prayer (see above paragraph ). So, I'm asking for prayer for strength and independence.
The boys are doing great. They are loving seeing everyone and going to the ball games. I am so blessed to have so much help, because I really am unable to do it by myself at this point in time. Thank you.
The doctor just called. He said that the abnormalities in my bone marrow is not something that they routinely see at Madigan Army Hospital, and it didn't fit into any good box for a diagnosis either. That is why he sent it onto Chicago/Northwestern University. At Northwestern, they said that while my bone marrow isn't normal, they have seen this before and that it does fit into a diagnosis. It is not cancer. Thank you Jesus!!! It is actually a response from my bone marrow overproducing in an attempt to keep my body alive. They think that if I can eliminate the aspergillus in my body via the fungal chemo (last day Jan. 22nd but who's counting?) and can avoid anaphylaxis triggers, my bone marrow should simmer down. They are going to repeat the bone marrow biopsy again in March. Whew! What a relief.
Now that the biopsy results are done, I want to reach for a goal that would feel so good...I want to be strong enough to drive again. It is so frustrating to be so weak and shakey that I can't drive. It feels like forever since I've had any independence...or even had the stamina to seek the independence. I'm out of a wheel chair and that's progress. I'm walking around the house without falling over and that's progress. I sooooo want to feel good enough to just go to the store for something if I needed it...to be able to get behind a wheel and drive. So, now that is my prayer request for today. Little things like driving or even walking out to check the mailbox take on a whole new meaning when you can't do any of them.
Mike is home in WA. He left Indiana on Saturday. We will miss him terribly. The boys and I are staying put in Mitchell this week because I am so weak. We may go up to Indy over the weekend, but we have not made definite plans yet. I do have a ride from Dawn lined up because I'm ....let me think here....oh yeah....too weak to drive....but God does answer prayer (see above paragraph ). So, I'm asking for prayer for strength and independence.
The boys are doing great. They are loving seeing everyone and going to the ball games. I am so blessed to have so much help, because I really am unable to do it by myself at this point in time. Thank you.
Still Waiting - Oct. 30, 2008
Dawn and I made it into Indy last night and arrived at her home around midnight. We had a couple of close calls on each plane ride. I'm assuming because it is a closed air circuit and there was aspergillus in the ventilation system. I had to double mask (which is a first) and use all medications. It also meant not lifting the mask to eat or drink anything, so I was just a wee bit thristy by midnight. But, by the grace of God, we made it. I've been doing great here and able to go without my mask until a short while ago. I decided to blow dry my hair. Apparently my blow dryer has aspergillus spores in it, because I swelled up like a balloon. That would explain why I could not even get ready at home without wearing a mask all the time. So the blow dryer is in the trash...another casualty to aspergillus. Better the blow dryer than me!
About the title, "Here's Your Sign"; I'm pretty sure you've all seen Jeff Foxworty doing his comedic stint with that phrase. I think that phrase fits because I think, and actually know in my heart, that God gave us a sign about the mold remediation costs (which were astronomical). Get this....Mike parked the truck and RV at a neighbors home at the bottom of our hill this week due to the sharp turns required to get into our driveway. Mike and the boys were packed and leaving today a few hours ago from our neighbors home, and who should pull into the driveway right before they leave? Yep, the ridgevent company that is responsible for the faulty installation in our home. They were pulling into our neighbors home to do a bid on some new construction that the neighbors are having done. Now, let me ask you this, what are the odds that out of all the roofing companies in Kitsap Co., and all the days of the week, and the hours in the day that this particular company would pull in right when Mike is getting ready to leave WA from my neighbors home? I feel like God was saying..."Here's your sign....I'm handing them over to you. We will be reimbursed." Too cool. I feel so encouraged!
As for my health, it is so nice to have adequate oxygen that my fingernail beds are pink again instead of colorless or blue. I have to take the full course of the medication used to treat the aspergillus inside my body, so that my body can stop reacting 24/7. That medication in conjunction with the 22 other perscriptions (yes, a total of 23 now) should eventually help my body stabalize. I call it fungal chemo because the side effects are so similar--only no hair loss. Yea! But, the medications make me feel sick. You know the ol' saying "it's gonna get worse before it get's better"? Well, it's true. My last day of fungal chemo ends Jan. 22nd and it is going to be a party! I don't have my bone marrow biopsy results back yet to indicate what the next step is for treatment with my lymphocytes. That could involve chemo, or maybe some other form of treatment. The doc wouldn't commit to anything yet. I tried to pin him down, but he's a slippery one!
So, that is the latest. Mike and the boys are on the road. I am breathing in Indiana. When they get here around Tuesday or Wednesday, we will go to Mitchell. Mike flys back to WA on Saturday. I have help and support with the kids here and it is awesome!!!!!!!!!! Rainy (Mike's step-mom) taught school for 33 years, and she is going to co-teach with me. That will help make up for Aaron missing his speach and occupational therapy that he has in WA 4 times a week. Rex, Mike's dad, is taking over piano for Noah. Douglas, my nephew, is taking over guitar for Aaron. And as for me....my body gets a chance to start healing. As for Mike, that guy needs a break! This has been very stressful for him. He can be a geographical bachelor for a couple of months and recover from the constant high alert status we've been under.
Thanks for your prayers everyone. You guys have no idea how much we appreciate them!
Love,
Anne
About the title, "Here's Your Sign"; I'm pretty sure you've all seen Jeff Foxworty doing his comedic stint with that phrase. I think that phrase fits because I think, and actually know in my heart, that God gave us a sign about the mold remediation costs (which were astronomical). Get this....Mike parked the truck and RV at a neighbors home at the bottom of our hill this week due to the sharp turns required to get into our driveway. Mike and the boys were packed and leaving today a few hours ago from our neighbors home, and who should pull into the driveway right before they leave? Yep, the ridgevent company that is responsible for the faulty installation in our home. They were pulling into our neighbors home to do a bid on some new construction that the neighbors are having done. Now, let me ask you this, what are the odds that out of all the roofing companies in Kitsap Co., and all the days of the week, and the hours in the day that this particular company would pull in right when Mike is getting ready to leave WA from my neighbors home? I feel like God was saying..."Here's your sign....I'm handing them over to you. We will be reimbursed." Too cool. I feel so encouraged!
As for my health, it is so nice to have adequate oxygen that my fingernail beds are pink again instead of colorless or blue. I have to take the full course of the medication used to treat the aspergillus inside my body, so that my body can stop reacting 24/7. That medication in conjunction with the 22 other perscriptions (yes, a total of 23 now) should eventually help my body stabalize. I call it fungal chemo because the side effects are so similar--only no hair loss. Yea! But, the medications make me feel sick. You know the ol' saying "it's gonna get worse before it get's better"? Well, it's true. My last day of fungal chemo ends Jan. 22nd and it is going to be a party! I don't have my bone marrow biopsy results back yet to indicate what the next step is for treatment with my lymphocytes. That could involve chemo, or maybe some other form of treatment. The doc wouldn't commit to anything yet. I tried to pin him down, but he's a slippery one!
So, that is the latest. Mike and the boys are on the road. I am breathing in Indiana. When they get here around Tuesday or Wednesday, we will go to Mitchell. Mike flys back to WA on Saturday. I have help and support with the kids here and it is awesome!!!!!!!!!! Rainy (Mike's step-mom) taught school for 33 years, and she is going to co-teach with me. That will help make up for Aaron missing his speach and occupational therapy that he has in WA 4 times a week. Rex, Mike's dad, is taking over piano for Noah. Douglas, my nephew, is taking over guitar for Aaron. And as for me....my body gets a chance to start healing. As for Mike, that guy needs a break! This has been very stressful for him. He can be a geographical bachelor for a couple of months and recover from the constant high alert status we've been under.
Thanks for your prayers everyone. You guys have no idea how much we appreciate them!
Love,
Anne
Here's Your Sign - Oct. 24, 2008
Dawn and I made it into Indy last night and arrived at her home around midnight. We had a couple of close calls on each plane ride. I'm assuming because it is a closed air circuit and there was aspergillus in the ventilation system. I had to double mask (which is a first) and use all medications. It also meant not lifting the mask to eat or drink anything, so I was just a wee bit thristy by midnight. But, by the grace of God, we made it. I've been doing great here and able to go without my mask until a short while ago. I decided to blow dry my hair. Apparently my blow dryer has aspergillus spores in it, because I swelled up like a balloon. That would explain why I could not even get ready at home without wearing a mask all the time. So the blow dryer is in the trash...another casualty to aspergillus. Better the blow dryer than me!
About the title, "Here's Your Sign"; I'm pretty sure you've all seen Jeff Foxworty doing his comedic stint with that phrase. I think that phrase fits because I think, and actually know in my heart, that God gave us a sign about the mold remediation costs (which were astronomical). Get this....Mike parked the truck and RV at a neighbors home at the bottom of our hill this week due to the sharp turns required to get into our driveway. Mike and the boys were packed and leaving today a few hours ago from our neighbors home, and who should pull into the driveway right before they leave? Yep, the ridgevent company that is responsible for the faulty installation in our home. They were pulling into our neighbors home to do a bid on some new construction that the neighbors are having done. Now, let me ask you this, what are the odds that out of all the roofing companies in Kitsap Co., and all the days of the week, and the hours in the day that this particular company would pull in right when Mike is getting ready to leave WA from my neighbors home? I feel like God was saying..."Here's your sign....I'm handing them over to you. We will be reimbursed." Too cool. I feel so encouraged!
As for my health, it is so nice to have adequate oxygen that my fingernail beds are pink again instead of colorless or blue. I have to take the full course of the medication used to treat the aspergillus inside my body, so that my body can stop reacting 24/7. That medication in conjunction with the 22 other perscriptions (yes, a total of 23 now) should eventually help my body stabalize. I call it fungal chemo because the side effects are so similar--only no hair loss. Yea! But, the medications make me feel sick. You know the ol' saying "it's gonna get worse before it get's better"? Well, it's true. My last day of fungal chemo ends Jan. 22nd and it is going to be a party! I don't have my bone marrow biopsy results back yet to indicate what the next step is for treatment with my lymphocytes. That could involve chemo, or maybe some other form of treatment. The doc wouldn't commit to anything yet. I tried to pin him down, but he's a slippery one!
So, that is the latest. Mike and the boys are on the road. I am breathing in Indiana. When they get here around Tuesday or Wednesday, we will go to Mitchell. Mike flys back to WA on Saturday. I have help and support with the kids here and it is awesome!!!!!!!!!! Rainy (Mike's step-mom) taught school for 33 years, and she is going to co-teach with me. That will help make up for Aaron missing his speach and occupational therapy that he has in WA 4 times a week. Rex, Mike's dad, is taking over piano for Noah. Douglas, my nephew, is taking over guitar for Aaron. And as for me....my body gets a chance to start healing. As for Mike, that guy needs a break! This has been very stressful for him. He can be a geographical bachelor for a couple of months and recover from the constant high alert status we've been under.
Thanks for your prayers everyone. You guys have no idea how much we appreciate them!
Love,
Anne
About the title, "Here's Your Sign"; I'm pretty sure you've all seen Jeff Foxworty doing his comedic stint with that phrase. I think that phrase fits because I think, and actually know in my heart, that God gave us a sign about the mold remediation costs (which were astronomical). Get this....Mike parked the truck and RV at a neighbors home at the bottom of our hill this week due to the sharp turns required to get into our driveway. Mike and the boys were packed and leaving today a few hours ago from our neighbors home, and who should pull into the driveway right before they leave? Yep, the ridgevent company that is responsible for the faulty installation in our home. They were pulling into our neighbors home to do a bid on some new construction that the neighbors are having done. Now, let me ask you this, what are the odds that out of all the roofing companies in Kitsap Co., and all the days of the week, and the hours in the day that this particular company would pull in right when Mike is getting ready to leave WA from my neighbors home? I feel like God was saying..."Here's your sign....I'm handing them over to you. We will be reimbursed." Too cool. I feel so encouraged!
As for my health, it is so nice to have adequate oxygen that my fingernail beds are pink again instead of colorless or blue. I have to take the full course of the medication used to treat the aspergillus inside my body, so that my body can stop reacting 24/7. That medication in conjunction with the 22 other perscriptions (yes, a total of 23 now) should eventually help my body stabalize. I call it fungal chemo because the side effects are so similar--only no hair loss. Yea! But, the medications make me feel sick. You know the ol' saying "it's gonna get worse before it get's better"? Well, it's true. My last day of fungal chemo ends Jan. 22nd and it is going to be a party! I don't have my bone marrow biopsy results back yet to indicate what the next step is for treatment with my lymphocytes. That could involve chemo, or maybe some other form of treatment. The doc wouldn't commit to anything yet. I tried to pin him down, but he's a slippery one!
So, that is the latest. Mike and the boys are on the road. I am breathing in Indiana. When they get here around Tuesday or Wednesday, we will go to Mitchell. Mike flys back to WA on Saturday. I have help and support with the kids here and it is awesome!!!!!!!!!! Rainy (Mike's step-mom) taught school for 33 years, and she is going to co-teach with me. That will help make up for Aaron missing his speach and occupational therapy that he has in WA 4 times a week. Rex, Mike's dad, is taking over piano for Noah. Douglas, my nephew, is taking over guitar for Aaron. And as for me....my body gets a chance to start healing. As for Mike, that guy needs a break! This has been very stressful for him. He can be a geographical bachelor for a couple of months and recover from the constant high alert status we've been under.
Thanks for your prayers everyone. You guys have no idea how much we appreciate them!
Love,
Anne
Going Public - Oct. 22, 2008
First of all, I want to start off with an apology. A friend of mine this past week said something to me that made me realize I have made a mistake and I need to ask you to forgive me. I have been sick for about a year and a half. It has all been quite weird really---we are just the medical oddity family I suppose. Anyway, most of you are not even aware that I have been sick, and the few of you that do know I have been sick do not know the severity of it. My friend, Cathie Dalzell, said to me, "Anne, if I had lung cancer and didn't tell you, wouldn't you be hurt?" Yes, I would be devastated. I would want to know so that I could love her, help her and pray for her. So...that being said...I'm sick....and I'm sorry I have not shared earlier. I didn't share for a couple of reasons. First. denial is a very comfortable place to be. Second, pride. I don't like being the one in need. I am far more comfortable helping than receiving.
All that being said, I will explain: The ridge vents in our home were installed incorrectly. This resulted in a mold growing in our attic that we were completely unaware of. June of '07 my eyes started swelling and I seemed to be having allergy issues. Things continued to progress until in the fall my lungs were riddled with fungal growths and I had a whole host of other issues. We still were unaware of the cause of my issue until May of '08 when I went into anaphylaxis during allergy testing from aspergillus mold. This prompted an inspector to come to our home who found the aspergillus in our attic. We gutted the house. Literally. Insulation, carpet... you name it. Everything. We thought remediating the house would help me get better.
My diagnosis is Allergic Bronchopulmanary Aspergellosis (ABPA). I have the version called Farmer's Lung. Meaning that I was exposed or saturated at a high level over an extended period of time. We knew the disease was progressive and that I may need new lungs at some point. I have been taking many medications including high doses of steroids for a year and a half. For all you medical people, I'm on 60-80 mg. prednisone daily. Unfortunately, I continue to go into anaphylaxis and was in complete respriatory arrest 3 weeks ago. I am obviously highly allergic to aspergillus now...(that is kind of an understatement). Since it happened at church, the cat was let out of the bag and people started to find out that I was sick. I didn't like that very much. I still don't like it. But what Cathie said rang true in my ears. I would be so hurt if any one of you didn't tell me you were in need.
We really thought ABPA was the complete diagnosis, however my anaphylaxis has been so frequent and severe that it prompted a bone marrow biopsy to check for mastocytosis. That would indicate the mast cells had changed and my body was done for. Praise God that the preliminary results on my mast cells look good, but you guessed it....there seems to be problem with the lymphocytes. The Pulmanologist & Hemotologist/Oncologist think that it could just be a reactive response due to the extreme stress my body has been under trying to stay alive. We won't know for another week if we need to treat with chemotherapy or not. It will depend on what happens with my lymphocytes in lab I suppose.
My sister, Dawn, flew out here Monday. She is flying me to Indiana tomorrow. It is imperitive that I get somewhere with lower aspergillus spore counts. They begin to drop off here in WA late Nov/early Dec. and when they are low enough I will return home. Mike is driving the boys across country with Mike Dalzell. This gives me a vehicle while I'm in Indy too.
Yesterday was a frustrating day because the counts were high and I couldn't breath. After a close call with anaphylaxis in the morning, epinephrine shots and more drugs than should be allowed, I huffed and puffed my way to the hospital. What we thought was another pneumonia was only a really, bad asthma. So that was good. It is under control today and it is wonderful to be breathing and not panting.
So, that is the Reader's Digest version of the last 18 months. I really am sorry I didn't share. I didn't want to face it, and I didn't want people to know I was sick. It was wrong and I see that now. If you would like, I will keep you up to date with my progress while I am in Indy via e-mail, but I don't want to just send it to you assuming you want it. Reply and let me know, k?
Mike has been amazing. He has literally saved my life 3 times. He is, I'm sure in need of support and prayer. As are the kids. It has been quite traumatic for anyone who has seen me stop breathing, but especially the boys and Mike.
All that being said, I will explain: The ridge vents in our home were installed incorrectly. This resulted in a mold growing in our attic that we were completely unaware of. June of '07 my eyes started swelling and I seemed to be having allergy issues. Things continued to progress until in the fall my lungs were riddled with fungal growths and I had a whole host of other issues. We still were unaware of the cause of my issue until May of '08 when I went into anaphylaxis during allergy testing from aspergillus mold. This prompted an inspector to come to our home who found the aspergillus in our attic. We gutted the house. Literally. Insulation, carpet... you name it. Everything. We thought remediating the house would help me get better.
My diagnosis is Allergic Bronchopulmanary Aspergellosis (ABPA). I have the version called Farmer's Lung. Meaning that I was exposed or saturated at a high level over an extended period of time. We knew the disease was progressive and that I may need new lungs at some point. I have been taking many medications including high doses of steroids for a year and a half. For all you medical people, I'm on 60-80 mg. prednisone daily. Unfortunately, I continue to go into anaphylaxis and was in complete respriatory arrest 3 weeks ago. I am obviously highly allergic to aspergillus now...(that is kind of an understatement). Since it happened at church, the cat was let out of the bag and people started to find out that I was sick. I didn't like that very much. I still don't like it. But what Cathie said rang true in my ears. I would be so hurt if any one of you didn't tell me you were in need.
We really thought ABPA was the complete diagnosis, however my anaphylaxis has been so frequent and severe that it prompted a bone marrow biopsy to check for mastocytosis. That would indicate the mast cells had changed and my body was done for. Praise God that the preliminary results on my mast cells look good, but you guessed it....there seems to be problem with the lymphocytes. The Pulmanologist & Hemotologist/Oncologist think that it could just be a reactive response due to the extreme stress my body has been under trying to stay alive. We won't know for another week if we need to treat with chemotherapy or not. It will depend on what happens with my lymphocytes in lab I suppose.
My sister, Dawn, flew out here Monday. She is flying me to Indiana tomorrow. It is imperitive that I get somewhere with lower aspergillus spore counts. They begin to drop off here in WA late Nov/early Dec. and when they are low enough I will return home. Mike is driving the boys across country with Mike Dalzell. This gives me a vehicle while I'm in Indy too.
Yesterday was a frustrating day because the counts were high and I couldn't breath. After a close call with anaphylaxis in the morning, epinephrine shots and more drugs than should be allowed, I huffed and puffed my way to the hospital. What we thought was another pneumonia was only a really, bad asthma. So that was good. It is under control today and it is wonderful to be breathing and not panting.
So, that is the Reader's Digest version of the last 18 months. I really am sorry I didn't share. I didn't want to face it, and I didn't want people to know I was sick. It was wrong and I see that now. If you would like, I will keep you up to date with my progress while I am in Indy via e-mail, but I don't want to just send it to you assuming you want it. Reply and let me know, k?
Mike has been amazing. He has literally saved my life 3 times. He is, I'm sure in need of support and prayer. As are the kids. It has been quite traumatic for anyone who has seen me stop breathing, but especially the boys and Mike.
One Good Breath - Oct. 20, 2008
Thanks for checking up on me everyone. I really appreciate it. You make me feel so loved by your phone calls or e-mails! Awe-shucks.
Things, meaning me, took a turn south yesterday, unfortunately. Something has exploded in my lungs. Not literally for those of you who are literal, but figuratively...sort of. Most likely a pneumonia is going to town in there. I pretty much feel like a train has hit my chest and I'm on the moon since oxygen is in such short supply. I'll be calling the Pulmanologist when the office opens. They probably won't have any appts. available, and will tell me to go to the ER. I don't want to go to the ER because they will have to call Pulmanology down anyway. (You see the circle I'm running in, right?) So, I'm asking for prayer for an immediate need of healing, and that I would miraculously get an appt. with Dr. Han this morning without all the extra of going to the ER. (By the way, every time I go to the ER I think the staff loses all color in their faces. They don't want to see me either!)(Val-would you add me to the prayer list at church?) How's that for a specific request?!
Dawn arrives tonight. We (as in "she" with me panting for air) are packing the next two days and then fly out on Thursday. Mike and the boys are leaving here on Friday night with another friend of ours, Mike Dalzell. He will be driving with Mike as far as Kansas City. I'll be staying at Dawn's until they arrive in Indy, probably Tuesday is our guess.
My inability to get a good breath last night seemed to be the catalyst for both boys to completely fall apart. Please pray for both Noah and Aaron to feel secure that God's got this whole situation....no matter what.
Thanks.
Love,
Anne
Things, meaning me, took a turn south yesterday, unfortunately. Something has exploded in my lungs. Not literally for those of you who are literal, but figuratively...sort of. Most likely a pneumonia is going to town in there. I pretty much feel like a train has hit my chest and I'm on the moon since oxygen is in such short supply. I'll be calling the Pulmanologist when the office opens. They probably won't have any appts. available, and will tell me to go to the ER. I don't want to go to the ER because they will have to call Pulmanology down anyway. (You see the circle I'm running in, right?) So, I'm asking for prayer for an immediate need of healing, and that I would miraculously get an appt. with Dr. Han this morning without all the extra of going to the ER. (By the way, every time I go to the ER I think the staff loses all color in their faces. They don't want to see me either!)(Val-would you add me to the prayer list at church?) How's that for a specific request?!
Dawn arrives tonight. We (as in "she" with me panting for air) are packing the next two days and then fly out on Thursday. Mike and the boys are leaving here on Friday night with another friend of ours, Mike Dalzell. He will be driving with Mike as far as Kansas City. I'll be staying at Dawn's until they arrive in Indy, probably Tuesday is our guess.
My inability to get a good breath last night seemed to be the catalyst for both boys to completely fall apart. Please pray for both Noah and Aaron to feel secure that God's got this whole situation....no matter what.
Thanks.
Love,
Anne
Foggy - October 15, 2008
Sorry about the delay in getting an e-mail out to you. It has taken me a while to get the fog cleared from my head. Everything is done now. It was more extensive than what we realized going into the biopsy appt. yesterday, making it a two part procedure. They are checking for mastocytosis, but also some other things as well. None of them are good, so there is no point trying to explain each of the possibilities. Mike and I firmly believe that it is straight forward ABPA, but we do know that this testing was necessary to rule out the other possibilities. The Hematologist said that he will have some preliminary results back by Friday, but it will take up to two weeks for everything to come back. I'll be looking forward to receiving a "good report" in two weeks...keep praying!
So here is the plan to get me out of aspergillus world: Dawn, (my sister for those of you who don't know her) is flying out here. She is coming to help me pack and then fly me back to Indiana. Here we are, all grown up, and she has to babysit me again! Mike is bringing the boys out separately. He doesn't want any distractions for Dawn or I. He is road tripping it across country, leaving here on the 25th. Dawn and I will fly out of here soon, I just have to get our flights lined up. All of us are walking on pins and needles trying to keep my airway open, so Dawn and I will leave as soon as I can get everything lined up for childcare, ect. Once the environmental levels of aspergillus fall and we have consistent freezing weather, the boys and I will return to WA.
Rex and Lorraine's home checked out with the lowest level of detectible aspergillus fumagutus at 18 per cubic meter. The outside was 36 per cubic meter. Here in WA, after remediation, our home was 5000 per cubic meter and currently it is 70,000 per cubic meter outside. I know these are geeky details, but it also gives a good perspective of the difference in the environment. I'm looking forward to breathing.
I'll be staying at Dawn's until Mike and the boys drive through and pick me up on their way to Mitchell. I'd love to see all of you, but I am quite the whimp on all these medications. Please come and visit me at Dawn's. I'm very concerned about going into Rolland Manor to see Mom due to the high likelyhood of aspergillus in the ventilation system. So, if you are coming to visit me would you bring Mom with you? I know that is quite a favor I am asking for!!
Love you and thanks for the prayers,
Anne
So here is the plan to get me out of aspergillus world: Dawn, (my sister for those of you who don't know her) is flying out here. She is coming to help me pack and then fly me back to Indiana. Here we are, all grown up, and she has to babysit me again! Mike is bringing the boys out separately. He doesn't want any distractions for Dawn or I. He is road tripping it across country, leaving here on the 25th. Dawn and I will fly out of here soon, I just have to get our flights lined up. All of us are walking on pins and needles trying to keep my airway open, so Dawn and I will leave as soon as I can get everything lined up for childcare, ect. Once the environmental levels of aspergillus fall and we have consistent freezing weather, the boys and I will return to WA.
Rex and Lorraine's home checked out with the lowest level of detectible aspergillus fumagutus at 18 per cubic meter. The outside was 36 per cubic meter. Here in WA, after remediation, our home was 5000 per cubic meter and currently it is 70,000 per cubic meter outside. I know these are geeky details, but it also gives a good perspective of the difference in the environment. I'm looking forward to breathing.
I'll be staying at Dawn's until Mike and the boys drive through and pick me up on their way to Mitchell. I'd love to see all of you, but I am quite the whimp on all these medications. Please come and visit me at Dawn's. I'm very concerned about going into Rolland Manor to see Mom due to the high likelyhood of aspergillus in the ventilation system. So, if you are coming to visit me would you bring Mom with you? I know that is quite a favor I am asking for!!
Love you and thanks for the prayers,
Anne
Biopsy Oct 15 2008
Mike and I are home from the hospital. Today turned out to be part 1, and tomorrow morning is part 2. Unfortunately, that means leaving the house at 6:30 AM! I'm not a morning person by the way. I function only out of necessity. Today was interesting. The bottom line is that we won't know anything until this test is done. Some parts of this test may take two weeks to get the results back. However, after a meeting of the minds with my team of Docs, they are comfortable with me leaving for Indiana next week without all the results back. Treatment would most likely take place somewhere else anyway due to the high aspergillus levels here.
Needy Oct 11 2008
I am sad today. I need to ask for prayer. Yesterday I experienced another episode of anaphylaxis, and the reality of making it through this for very long has hit myself and Mike extremely hard. My team of doctors decided yesterday, based on a poor liver function test, that there is another possibility for my severe reaction. Mastocytosis. Mastocytosis means that my histimine cells have changed at the very basic level and are killing my body. I will undergo a bone marrow biopsy on Tuesday the 14th to see. If it is, there is nothing more that they can do for me. I will continue with the treament regimen I am on (which is no walk in the park), but it is something to prolong my life. I also cannot get away from it; meaning that if I go to Indiana, it will still attack my body. If it is not Mastocytosis, then it is straight forward ABPA (Allergic Bronchopulmanary Aspergellosis). Ironically, I'm praying it is ABPA because I would have the possibility of living much longer and raising the boys. I won't be able to leave for Indiana until the 21st now because they want me to wait for the biopsy results in case we need to start some sort of chemo. Please pray for my "mast cells to be normal".
Mike has now been placed in a terrible position at work with a "mission critical" situation making it impossible for him to leave until the 25th of Oct. My 2nd part of my prayer request is this: everytime I have experience anaphylaxis, a doctor has been present to get me breathing again--either Mike, an Allergist or and ER doc. I am filled with anxiety about traveling without him by side. Mike understands, but wants me fly to get there sooner and out of the high aspergillus spores here. We need to know what we are supposed to do to transport me back to Indy.
3rd part of my prayer request: The last two times my throat has closed on me, I have started to panic. This is not good, because I need to stay calm and function wisely to get the shots in me and call 911. Please pray for me to supernatually remain calm. Please pray that God will over rule my natual response to not breathing.
The 4th part of my prayer request is this: I am asking for a miracle. I want complete healing. I want to raise the boys and school them. I don't want to see my children hurt and lose their mom. It was difficult yesterday when the Doctor directed me to have my will, ect. in order. The reality hit us hard. I am not afaird to die. Not in the slightest. I have complete peace over that. Standing there talking with Jesus--knowing that He loved me even through all my millions of mess-ups--knowing that He knows everything I ever did or said or thought and He still loves me--knowing that He wanted me to spend time with Him forever--I'm not afaird. I am sad though. I'm sad for the boys. Mastocytosis is horrible and quick, ABPA is chronic and eventual. Neither are good, but I would like to finish raising the boys because I love them so much. So I am asking for healing. Total and complete healing. I believe that if I am healed from this, who could deny the existence and mercy of God? But even if I am not, believe me, I know, that I know, that I know, He is real and He does everything for a purpose. We just may not know that purpose here on earth.
5th, please pray for Mike. I am sure he is quite worried. It is also a different lifestyle for him, because I am dependent on him; really for the first time in almost 21 years of marriage. I need him desparately. Until the last year 1/2 I have always been self-sufficient and completely in control of all aspects of running our home. He has more than risen to the challenge, but I do know he needs to be undergirded with prayer.
Finally, an immediate luxuery would be a reprieve from the nausea. The medication I'm on for the Aspergillus acts like chemo in it's side effects. While I have not much lost weight to the astronomical amounts of prednisone I am taking, I also have not been able to eat much. I am weak. Pray that I could regain some strength.
So, I was wondering if one of you guys would go talk to Mom and try to explain to her a little bit about what is going on. When I talk with her on the phone, I cannot tell if she is comprehending what I am saying. She might, but I feel like someone should talk to her in case they can't bring me out of anaphylaxis next time....in case God chooses, in His sovereignty, not to heal me. Believe me, I am in no way giving up or resigning myself to an early demise. I am being practical. I think Mom should know and understand. When people care, it is prideful not to share your burden and the truth of your circumstances. God hammered that home to me last week. So I'm laying down my pride. We are officially the "needy family" again. Humbling, but true.
Thank you for your prayers. I know I can count on you to lift us up. I know.
I love you,
Anne
Mike has now been placed in a terrible position at work with a "mission critical" situation making it impossible for him to leave until the 25th of Oct. My 2nd part of my prayer request is this: everytime I have experience anaphylaxis, a doctor has been present to get me breathing again--either Mike, an Allergist or and ER doc. I am filled with anxiety about traveling without him by side. Mike understands, but wants me fly to get there sooner and out of the high aspergillus spores here. We need to know what we are supposed to do to transport me back to Indy.
3rd part of my prayer request: The last two times my throat has closed on me, I have started to panic. This is not good, because I need to stay calm and function wisely to get the shots in me and call 911. Please pray for me to supernatually remain calm. Please pray that God will over rule my natual response to not breathing.
The 4th part of my prayer request is this: I am asking for a miracle. I want complete healing. I want to raise the boys and school them. I don't want to see my children hurt and lose their mom. It was difficult yesterday when the Doctor directed me to have my will, ect. in order. The reality hit us hard. I am not afaird to die. Not in the slightest. I have complete peace over that. Standing there talking with Jesus--knowing that He loved me even through all my millions of mess-ups--knowing that He knows everything I ever did or said or thought and He still loves me--knowing that He wanted me to spend time with Him forever--I'm not afaird. I am sad though. I'm sad for the boys. Mastocytosis is horrible and quick, ABPA is chronic and eventual. Neither are good, but I would like to finish raising the boys because I love them so much. So I am asking for healing. Total and complete healing. I believe that if I am healed from this, who could deny the existence and mercy of God? But even if I am not, believe me, I know, that I know, that I know, He is real and He does everything for a purpose. We just may not know that purpose here on earth.
5th, please pray for Mike. I am sure he is quite worried. It is also a different lifestyle for him, because I am dependent on him; really for the first time in almost 21 years of marriage. I need him desparately. Until the last year 1/2 I have always been self-sufficient and completely in control of all aspects of running our home. He has more than risen to the challenge, but I do know he needs to be undergirded with prayer.
Finally, an immediate luxuery would be a reprieve from the nausea. The medication I'm on for the Aspergillus acts like chemo in it's side effects. While I have not much lost weight to the astronomical amounts of prednisone I am taking, I also have not been able to eat much. I am weak. Pray that I could regain some strength.
So, I was wondering if one of you guys would go talk to Mom and try to explain to her a little bit about what is going on. When I talk with her on the phone, I cannot tell if she is comprehending what I am saying. She might, but I feel like someone should talk to her in case they can't bring me out of anaphylaxis next time....in case God chooses, in His sovereignty, not to heal me. Believe me, I am in no way giving up or resigning myself to an early demise. I am being practical. I think Mom should know and understand. When people care, it is prideful not to share your burden and the truth of your circumstances. God hammered that home to me last week. So I'm laying down my pride. We are officially the "needy family" again. Humbling, but true.
Thank you for your prayers. I know I can count on you to lift us up. I know.
I love you,
Anne
Coming Home October 2008
Hi Everyone,
As all of you know, I have been quite ill the last year & 1/2 with the aspergillus in my lungs and allergy to it. The details are so many, it just feels like peeling an onion---you know----too many layers to go in to in one e-mail. Anyway, the bottom line is this. I continue to experience serious anaphylaxis from aspergillus exposure here. It is the highest in the Pacific Northwest in the fall in the environment. I cannot take more steroids than I am on. I am currently maxxed out on all medications. I am also taking a drug to kill the residual aspergillus in my lungs ( basically fungal chemotherapy). As recently as yesterday I went into respiratory arrest. After being released from the hospital, the decision has been made to remove me and the boys from this area until the first of Dec. when the aspergillus counts fall. I also have to taper down of the prednisone due to an ulceration in my stomach. So, I am coming to Indiana to heal and hopefully recover some of my health. I will be arriving the end of Oct. and we are staying at Rex & Lorraine's providing their forced air system tests negative for aspergillus. I plan on doing 4 days of school per week because I cannot miss 6 + weeks of school, but then would like to spend 3 day weekends visiting. Mike is taking off work and driving across country with us. He will then fly back and help me drive back to WA in Dec. We were offered a new motorcoach today from a family at church to drive across country. They were present yesterday when I went into respiratory arrest and the EMT's were working on me. It is a huge blessing to be given this, as aspergillus is harbored in forced air systems in homes, hospitals, & schools or hotels; so staying in a hotels driving across country was out of the question. I also need to bring the dogs in case Mike gets deployed--which is likely. God is working everything single thing out. So, I'm hoping for some good visit time with you guys. It would be wonderful to have thanksgiving with both sides of the family--but I don't know who gets together and when. I also will seriously enjoy getting healthy!!!....and losing my prednisone moon face!
I realize that this all sounds a bit confussing. You would probably understand better what I have by just googleing my diagnosis: ABPA "Allergic Bronchopulmonary Aspergellosis". When Mike and I get there, we can explain so much more in person to you.
Aaron's 9th birthday is Nov. 2nd, and I would love to have a party for him. I'm still working on the details, but I hope you all can come. I'm trying to work on a central location; which isn't easy since you guys are spread 2 hours apart!
As all of you know, I have been quite ill the last year & 1/2 with the aspergillus in my lungs and allergy to it. The details are so many, it just feels like peeling an onion---you know----too many layers to go in to in one e-mail. Anyway, the bottom line is this. I continue to experience serious anaphylaxis from aspergillus exposure here. It is the highest in the Pacific Northwest in the fall in the environment. I cannot take more steroids than I am on. I am currently maxxed out on all medications. I am also taking a drug to kill the residual aspergillus in my lungs ( basically fungal chemotherapy). As recently as yesterday I went into respiratory arrest. After being released from the hospital, the decision has been made to remove me and the boys from this area until the first of Dec. when the aspergillus counts fall. I also have to taper down of the prednisone due to an ulceration in my stomach. So, I am coming to Indiana to heal and hopefully recover some of my health. I will be arriving the end of Oct. and we are staying at Rex & Lorraine's providing their forced air system tests negative for aspergillus. I plan on doing 4 days of school per week because I cannot miss 6 + weeks of school, but then would like to spend 3 day weekends visiting. Mike is taking off work and driving across country with us. He will then fly back and help me drive back to WA in Dec. We were offered a new motorcoach today from a family at church to drive across country. They were present yesterday when I went into respiratory arrest and the EMT's were working on me. It is a huge blessing to be given this, as aspergillus is harbored in forced air systems in homes, hospitals, & schools or hotels; so staying in a hotels driving across country was out of the question. I also need to bring the dogs in case Mike gets deployed--which is likely. God is working everything single thing out. So, I'm hoping for some good visit time with you guys. It would be wonderful to have thanksgiving with both sides of the family--but I don't know who gets together and when. I also will seriously enjoy getting healthy!!!....and losing my prednisone moon face!
I realize that this all sounds a bit confussing. You would probably understand better what I have by just googleing my diagnosis: ABPA "Allergic Bronchopulmonary Aspergellosis". When Mike and I get there, we can explain so much more in person to you.
Aaron's 9th birthday is Nov. 2nd, and I would love to have a party for him. I'm still working on the details, but I hope you all can come. I'm trying to work on a central location; which isn't easy since you guys are spread 2 hours apart!
Feburary's News
Hi Everyone,
What a wild and crazy, completely unpredictable life we live. I guess it is important to have things happen so that we can stay utterly dependent on God. Self-sufficiency has always been an issue for me, so the humility necessary to realize I can’t do it all still stings. Unbelievable! You’d think I’d be used to this “new normal” of accepting help where I need it, but it stings the pride. On the flip side, I’m excited that I am stable. I feel the best I have felt since last September before my health completely plummeted. The aspergillus counts are low, and my entire body has settled way down. My bone-marrow isn’t going nuts anymore, and I actually went out and did a few minutes of yard work yesterday. I felt a little sorry for my neighbor because I looked like a space alien wearing a respirator and goggles, and he nearly wrecked doing a double take trying to figure out what sort of contraption I had on my head. Ahhhh…humility. It is so painful, and yet so beautiful on people. The most beautiful people I know are completely humble. I look forward to the day when I will wear that beauty…. but not with pride! J
I’ve heard the phrase lately from well meaning people that “God will not give us more than we can handle.” As much as I would like to draw comfort from those words, I experienced an “ah ha!” moment about 3 weeks ago when I realized that “Oh yes He will!” He will DEFINITELY give us more than we can handle in the hopes of beating the ever loving pride right out of us and making us utterly and completely dependent on Him. That is what He wants. No self-sufficiency. No pulling yourself up by your bootstraps. No self-medicating. No running to another person. And no running away from your problems. He wants us to just throw our helpless selves at His feet. What a moment that was to realize I could do nothing, and I mean nothing, to “fix” everything that is going on here. That certainly is not in my nature to release control of a situation to anyone. To describe me as determined and goal oriented might be an understatement. After all, I’m just like every one else…I just want things the way “I want things!” Humph!
I’d like to apologize in advance, because this is the shortest version of the past several weeks I can come up with. I had my appt. with the specialist in
Excellent news on Mikey. Miraculously, he has been pulled from this deployment and will be staying with us. Wahooo!
The lawsuit is moving forward. We are still waiting to see if the construction company had a mold exclusion in their insurance policy. We won’t know until the deadline for the initial request for settlement. Regardless, we cannot sell the house until the lawsuit is completely done. Once that is done, a major down size is in order so that I can handle our home.
We are just one wacked out family; I’ll tell you what! It is good to know that I have a healthy husband. Now isn’t that a walking miracle?! Who ever would have guessed that 10 years ago God would have healed him from a disease that was “incurable”? Yeh, yeh, yeh, this update is long but I wouldn’t know how to shorten it and still convey what I’ve learned these past few weeks. I’ve learned that God will give me more than I can handle for the sole purpose of trusting Him. I was doodling in my journal and starting writing a study about it. So far I’ve got it nailed down to TRUSTING HIM.
T R U S T
T Total
R Release
U Under
S Sovereign
T Truth
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