VF Phx, AZ to Portland ME...

[NatureDudeME]

My Story

I lived in Phoenix, AZ for ten years, The sad fate that made me move...

I was a person that was always doing something outdoors, in shape, busy, helping friends, wrote/read poetry ,having fun, camping, hiking, mtn biking, I restored antique campers, was in the army for 12 yrs, Worked for Borders Books in PHX, (BMW before) and loved life. I like anyone had my problems and issues, but I was happy. This is what happend to me, with Valley Fever, (VF) and where I am today....
April 20th, 2000, I went hiking/Rock climbing on a inner city mountain with some friends. It was a beautiful, sunny day, about 80 degrees.
We started hiking up the side, then rock climbing, as we approched the ledge of the path above, the wind picked up and blew all this dust right into our faces, of course we breathed it in.(they were doing construction on the trail, but had not posted signs as they had in the past.) Living there as long as I had, I knew to rinse our mouths out and try our best to get all the dust out of our system. We continued and had a great day.
That evening, I was starting to feel sick, couldnt breath, the pain was horrific. Friends took me to Scottsdale Mem Hospital South, and they took me right in, and we went from Testing me for HIV, and TB, asthama, to plurisy to possible Valley Fever diagnosis, awaiting blood work.
They sent me home, to see my Primary Care Doctor the next day, and they would forward all my info to him. The next day I went to see him, and he was in the office long enough to tell me I had a pulled muscle, and thats all it was, take hydrocodone, and rest a few days. This is where I have to say that now I realize I placed trust in someone that I shouldnt have.
I went home, started taking the medications, and would set the alarm clock for 4 hours, wake up, take the meds and then pass out for 4 hours. after 3 days I tried to go back to work, but was so sick, and couldnt breath. I then returned to his office (doctor) and he again stated that I pulled my muscle and needed rest. I asked about the test results and possiblity of an Xray, and he said the test showed nothing, and that there was no need for a Xray. I went to him two more times, sick and not breathing well.
May 01, 2000 a friend (Lynn) found me, at my house. Called my Doctor said she was taking me to Scottsdale Memorial Hostpital South. He called the hospital and told them I was on my way, and when we got there, they admitted me, and quarenteened me. I was so sick I knew I wasnt going to make it, I gave my friend (Lynn) all rights to handle everything for me, and told them what I would allow and wouldnt. With in hours after they got me stable enough, I went into surgery (for a Radical Thoracotomy of the left lung due to an Empyima in the plurral linning) that was to be 4 hours long, and ended up being over 16 hours. (had to get a Mayo Clinic Dr to help) They removed most of my left lung, my plurral linning, rib cage sections, nerves, muscle tissue, linning to my heart and organs etc... as well as damaging the nerves from my spine to my center front on the left side. I went to ICU, and they thought for sure, I wasnt going to make it.
It took them a long time to get me to breath on my own with out loosing me everytime, and I remember so much of it. When they finally got me breathing on my own, and off resperation, I had lost 60 lbs, couldnt walk, barly talk. I was given NO Physical Therapy, only Speech enough so I could swallow THICK liquids, and was rolled out of the hospital, lugged from my car to my house, and a friend (Michael) cared for me (2 months) till I could care for myself again, atleast with in the house. This friend gave up his Job and life 8 hours away to make sure I was ok. I have never known friendship like that before.
I was told by the lung specialist, and my surgeon, that if I wanted to see home (Maine) I need to think about going, that the remander of my lung, and anything on that side, was adhearing to my rib cage, and they couldnt do anything for that. That I was lucky Im still seeing the light of day, and that its not going to be easy. The lung specialist even said, there isnt much anyone can do, the damage is done.
Anyone that knows me, realizes that Im happy no matter what, Im very lucky that I have the outlook I have. That being said, I had been told by my Doctor that he was at fault, and that he should have known this was what it was way before, and he apoligized, BUT do you think I could get a lawyer to do anything...? AZ Law protects these Doctors, and there wasnt anything I could do. Even the Medical licence board said that they couldnt do anything. I was his fourth mistake.
I returned to work (Borders books) part time, pushing myself, and with help from people in my life, and great understanding from people I worked with. It took me a long time to get to where I could do full time hours, but with adjusted duties to make it possible.
The Doctors continued to tell me I needed to leave AZ, and that my time was limited, although they were impressed that I got where I had, they insisted it was best to leave.
I did a Transfer with Borders. Thanksgiving weekend, my friend, the one that lived 8 hours away, whom was still there helping me, again helped me move all the way to Maine. I do not know how we did it, we drove from Phx, to Sante Fe NM where he is from, we then drove from there to Santa Rosa NM, where my car broke down. We then rented a uhaul truck and trailer to carry my car, then drove 3 days straight to Maine.
One problem after another, (one being the Borders here refused me the transfer due to my medical issues) me being sick, not capable of things others my age could do, I found a job, apartment, and after going though 3 Doctors, settled with Maine Medical Centers Doctors, family practice, councelors, accupunturist, etc. After 8 months on my job, Aetna (my employer) forced me on disability because they couldnt stand seeing me in so much pain, and so sick at work. They did all the paper work, and even though yes it benifited them, they didnt have to help so much. My landlord Steve Whittier of East End Corp, helped with all the issues of life, rent, food etc.. got everything going with me, again he could have just made me move, but instead he helped me.
Today, between having a hard time swallowing (things go into my lungs really easily) and living with such a high level of pain, I cant imagine how I do it myself. I can at any moment become ill, due to the pain level. I have tried everything out there, and Im not one that can take a drug, feel high, and still deal with the pain, cause they certainly dont deaden the pain for me, it just makes me loopy. I want to know life. The only things that help make the pain tolrable is Accupunture, Yoga, Visualization, Meditation, hot showers, Stretching, and remain calm when I would normally get upset. I have a nice apartment, the same old car, wonderfull friends, two adorable cats, and although my body is in such terrible pain, Im at peace, I can smile, and laugh, make jokes, because honestly, what else is there to do, after everything that has happened. Im not going to spend the time I have been blessed with being misrable.
Life isnt easy by no means, and I wouldnt wish what has happened to me on anyone, and even though Id rather be working, making my own way in life, and getting ahead, Im thankfull for what I have, and for those people that has sacraficed so much for me to be where I am.
I couldnt ever have thought that at my age now, 42, I would be where I am. All the things in life, has lead me to this one huge lesson, and its make sure I work on the person I am, on the inside.
For the record, my family here in Maine, although we never were close, at first wanted me to come home, but after I got here, decided I should have stayed in AZ. They have thier own issues, and Im ok with that. I have learned alot, but the most important thing is.. People are responsable for themselfs, even if they wont accept that responsability. We dont need to carry others things around for them.
Finally, Doctors have recently found inflamation in my blood, they again tested me for everything, and all came back negitive. Waiting on the VF test to show if it is active again.... The joint pain, exhaustion, etc has increased. just have to wait.
I have shared alot in hopes that someone, just one person can gather strength from what I have gone though, and that one person can see that even with things that we see as bad, there can come good from it.
Im sure my spelling and grammer is not as good as it could be, honeslty there are more important things to worry about.. Like can I get outside before the sun goes away today... hee hee..
Ask me any questions, or send me comments...
Thanks for a venue to tell my story...
Peace, blessings and hugs..
David Storer
May 18, 2005
_________________
My home page...
http://naturedudeme.8m.net/
My Story:
http://valleyfeversurvivor.com/vfsmb/viewtopic.php?t=116

[walker]

That is a sad story! I lived in Phoenix for 3 years. I was in the Air Force living in Glendale. I start to have real bad back pains and didn't know why I was hurting so bad. I play basketball alot and I thought maybe i pull a muscle or something like that. the doctors on base told me I had a back strain and take some pain pills and it would get better over time. Yeah right, after about 3 months I was in so much pain I could barely walk put on clothes or even go to work. I was taking so many pills I had to go home early everyday. I had MRI's done bonescan, Catscan and every blood work you could think of and yet they couldn't tell me what was wrong. They said it could be cancer a tumor or anything they just don't know. Then they sent me to the Mayo Clinic they said I had a slip disc in my back I all I needed to do was rest. it got so bad I beg my doctor to send me to another doctor. I finally got another MRI and it show something was terrible wrong. This is after 7 months of pain. I went to another doctor think god and he did a bisopy on me. It should I had valley fever. I was going to have surgery the next day but it was so bad they decide to put me on amorterrible! that stuff is horrible man. It made me sick and I could barley take it. I had a home nurse come to my house for the next month and help for a couple of hours. Then on New years day of 2004 I could not raise out of the bed. I heard a pop in my back and i thought I would never walk again. I was admitted to the hosiptal at John C Lincoln and stay for 28 days. I had 2 surgerys. The first was to clean the infection out!! That surgery took me 8 hours. The second one was 10 days later and I had to have a spine fusion. They put rods in my back and a cage to hold me together. I live in Dallas now and I still haven't really fully recover. Vf is very dangerous. People should know how this affect people lives.

[NatureDudeME]

WOW Walker, Im so very sorry that you had to go though all that. What a shame the medical community cant pay attention to something that is so prevalant in that area. I was lucky that mine happened so fast, although I pay for it today.
You might want to try accupuncture, or some gentle Yoga for stretching, Makes a diffrence for me. I do take suppliments but thats a individule thing, A good way for that is a BioKinesioligist, but as with anything becarefully they arent just pushing something they are selling.
Hang in there dude.. It has to get better...
David
_________________
My home page...
http://naturedudeme.8m.net/
My Story:
http://valleyfeversurvivor.com/vfsmb/viewtopic.php?t=116

[kat]

Hey NatureDudeMe,

Haven't seen any post from you for a few months. Are you ok? Think about you often and hope things are going ok for you.
_________________
God Bless you and keep you,
Kathy

[NatureDudeME]

Hello everyone,

I finally got a appt with the local ID Doctor, but it was a lost cause, they claim to know nothing about Valley fever, and refused to do the test.
The inflamation that was in my blood has disapeared.
I talked my PCP into doing the test for VF, and it came back as not present, of course she made sure to tell me that its possible that its just not showing itself.
I do beleave that the problems I have now are still from the surgery, and my joints are feeling much better than they were a few months ago, maybe just maybe its just done doing what it wanted....
That said, Im dealing with things in a positive way, and feel very lucky to still be kicking around, and making people laugh.
I hope everyone is doing well.
Peace and smiles
David
_________________
My home page...
http://naturedudeme.8m.net/
My Story:
http://valleyfeversurvivor.com/vfsmb/viewtopic.php?t=116

[NatureDudeME]

Just a update.
The last three weeks I ahve been having treatments for the pain from the surgery. They have shot provocain into me from my spine on the left side acround to my middle section under my arm to my belt line. The result of the pain of the shots takes alot out of me, makes all my muscles hurt, and Im extreamly tired. My Pain level decreases some from the numbing, basically the oaint on the outside numbs and the pain on the inside doesnt. I have had this done three times int he last three weeks, and with one more this week to come. In hopes it will make the nerves regenerate and decrease my pain, but no time line for this.
My accupuncturist is also doing a run at anti-inflamation treatment. Waiting on the new test results for Titter test.
Hope everyone is doing well.
Peace and blessings,
David
_________________
My home page...
http://naturedudeme.8m.net/
My Story:
http://valleyfeversurvivor.com/vfsmb/viewtopic.php?t=116

[NatureDudeME]

On going pain and stiffness in the joints seem to be a part of the Valley Fever problem. Atleast so Im told and find out all over the net.
Humidity seems to make it worse, and as does the cold. Inflamation goes along with it, but the inflamation is also in other areas of my body again VF seems to be the cause. ID doctors here are terrible, they dont like testing so its a huge deal to handle, but my regular Doctor seems ok with it sometimes, just a test that takes a while, they send it out to CA to do it. They have found the inflamation, just have to deal I guess.
All that said, life is not too bad, a recent move to a nice townhouse, with in the downtown area of Portland, ME has inproved many things.
Life is about choices, and I for one choose to make the most out of everything, Smile all the time, no matter how I feel, make others feel good, and be happy with what I have today.
I hope everyone else is well...
Peace, and energy,
David
_________________
My home page...
http://naturedudeme.8m.net/
My Story:
http://valleyfeversurvivor.com/vfsmb/viewtopic.php?t=116

[kat]

David,
It's so good to hear from you again. Glad to hear that you are successful in keeping your spirits up despite all your pain. Keep your chin up, it makes things more bearable.
_________________
God Bless you and keep you,
Kathy

[NatureDudeME]

Hey everyone,

Thought I would continue to update as it builds a history for others.
I am now 7 years post infection and surgery. Daily I live with a extreame high level of pain. Regardless if I sit on the couch, or am out working in the garden, I hurt the same. I tire extreamly easy, and the second I stop activity, I can hardly make it home safely on some of those days.
For the last 45 days I have again had a increased Titer Level of the "Valley Fever" in my body. Randomly my joints, and lympnodes swell and go down, cause pain all over, my head will pound, even my right arm stopped working all together for about 8 hours from the swelling one day. Should have seen me in the garden that day. My Doctor has asked me to slow down, take things 10 mins at a time, scheduled MRI and Cat scans in Boston (waiting for medicare to say they will pay), and is trying to influence my partner that I need to take things 10 mins at a time.

Ok so Im sick, so I have this in my body, and its reaking havock again this spring. Yes It is very hard to keep things inside of where I live,(not let other see me hurting etc.) its hard sometimes to be happy, when others cry about small things, its hard to realize the life I built and wanted, my dreams, are all deminished, and changed in such a way, one wouldnt think they were ever mine. I like others get depressed and try to not be, but it happends. I use the phrase a lot, "if I was a couch potatoe before, I would be happy, sitting there popping pills, doing nothing, but I wasnt, I was active and busy all the time" I then add If I was a couch potatoe I wound not have gotten sick to begin with.
Long story short, Yes life has dealt a hard row to hoe, and its not easy, but every morning, when I wake up from tossing and turning because I cant sleep due to pain, I am thankful that I can put my feet on the floor, go to the bathroom myself, feed myself, see the sunshine, feel it on my face, or see and feel the rain, or snow. Im thankfull for the nice, kind responsable people and I really dont care about the others that push the system, and are just so self involved that they care only about themselfs.
Im Happy, and content that for someone that had 6 weeks to 6 months to live, is still here after 7 years. Yes the pain is tough, breathing is hard, and people dont understand, but being on this side of the bricks, is a lot more tollerabloe than the alternative.
I hope everyone is well, and atleast keeping their head above water.
Just think about what you can do next week, the week after, when it gets tough. That, Meditation, my version or Yoga, stretching, accupunture, adjustment, breathing treatments etc... is what keeps me going and maintains me, as well as being out in life, and not on the couch regardelss of the pain level, depressed feelings or breathing concerns.


Peace, love, and sunshine,
David
_________________
My home page...
http://naturedudeme.8m.net/
My Story:
http://valleyfeversurvivor.com/vfsmb/viewtopic.php?t=116

[kat]

David,
It is so good to hear from you. It looks like you have returned to AZ. I hope the warmth of the sunshine lifts your spirits. I really feel for you and all that you are going through. Sometimes we are given trials in life that seem impossible to deal with. But it is what makes your character.
You are living the best life that you can live with the trials you are given. Enjoying the small things each day that come your way.
Thank you for sharing your losses and your joys. I was feeling sorry for myself today. I have been working in my garden and my tendonitis has flared up. It is hard to sleep and since it is my right arm it makes doing anything harder. (I got tendonitis from lifting my brother by his sheets) Been through therapy twice and probably will have to go again. But your message today has made me thankful that, at least, I can enjoy many things despite my small problems. And small they are, in comparison to what VF can do to someone.
You are right about the alternative! My best to you David and I will pray that you find relief from the pain you are suffering.
_________________
God Bless you and keep you,
Kathy

[Ladysmith52]

Hi David -
I'd like to encourage you today by thanking you for posting your VF story & updates. I've been on the board for quite awhile but do not remember reading your story before. You are truly an inspiration to me and I thank you for sharing yourself so openly.

My problems are completely miniscule compared with what you have been through and how you continue to look on the bright side of life is the most challenging, yet uplifting part of your story.

Your spirituality and faith in life has challenged me to pursue the finer things in life when good health is not attainable. And that would be first and foremost "gratefulness" for little things that can bring smiles to our faces on a daily basis and for friends & family who continue to lift us up and help us when we cannot do that for ourselves.

Wonderful thoughts and wishes are coming your way on my behalf and I pray you will continue to share your insights of optimism because you are totally contagious - in a wonderfully uplighting way!
Peace & blessings,
Diane S.

[NatureDudeME]

Hi everyone,

Thought I would do a update again.
Still on going joint, and body issues with pain, hard to move, stiffness, and the medical society cant explain other than must be VF and send me home.
I still have the high level of pain from the Radical Thoracotomy, and as the above record shows, the joint and body stiffness, with pain is a on going thing.
I still reside in Portland Maine and although the Doctors here dont have a clue about VF, I am not sure moving to the South West again is a good idea. Is it possible to be reinfected and become worse? Im guessing there isnt enough research out there yet to tell.
I have been told most recently I am IGA Deficient. Decresed imune system. They arent sure if its is a result of VF, or if I was that way before.
Im awaiting more test and cat scans, and will try to post again to record it.
I hope everyone is doing well, and enjoying this time of year. Here in Maine the leaves are beautiful, the air crisp and smells makes me want to lay out in the leaves and roll around. Now to figure how to get up...LOL

Hugs,
David
_________________
My home page...
http://naturedudeme.8m.net/
My Story:
http://valleyfeversurvivor.com/vfsmb/viewtopic.php?t=116

[kat]

David,

It's good to hear from you again even though it's not the best of news. Sorry to hear that you are still struggling with VF symptoms. But, hey, your still with us and that is a good thing! Thanks for the update.
_________________
God Bless you and keep you,
Kathy

[triplechoco]

thanks for sharing this one.


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