Print

[sherry]

I had never heard of blasto until last thursday, May 14,2009. It was a relief to know what was wrong with him but is also scary.
April 5, 2009 Saturday my husband Mark had a cough and a fever over 105, We wound up in the ER. Now Mark never has been sick a day in his life and is a local truck driver set to go back to work on Monday April 7th. When we went to the er they did an x-ray and said they needed to run more tests an hour later they came in and told us there was a spot in his lung the size of a nickel and they though it might be lung cancer.We went and saw a specialist on Wed. whom sceduled a pet scan for the 18th to make sure there was no infection in his body, so 2 weeks of sitting on pins and needles for them to even do the test. When we went back and saw the dr he said the pet scan was hot for cancer but there was a kidney problem and we needed to see another specialist the next day. this was wed the 22nd. Thurs the 23rd we saw a kidney specialist and they were doing surgeory on the 24th. On mon the 27th they were doing a bronchyscopy on mark. Now like i said he has never been sick does not go to doctors except for his dot physical. On the 30th they said that they could not get ahold of the tumor to biopsy but it was 3xs the size of what it was on the original xray. We saw a surgeon on the 6th of May who was suspose to do a wedge biopsy and then remove as little as possible of the cancer. all along they kept saying it looks like cancer acts like cancer using words like very aggressive and extremely fast growing...but could not say 100%   .... I really think the not knowing for sure was the worse part. They set his surgeory for May 11th and told us to get his affairs in order..we just kept looking at each other thinking this is not happening. His work let him go since he is ill and we lost our health insurance. I think we kept going out of shock and thinking that atleast we will konw for sure on the 11th. well after surgeory the surgeon said he did not think it was cancer but that he had removed my husbands lower left lung since it was more than 50% covered with a tumor.Finally on the 14th we were told by a infectios disease control lady that he has Blastomycosis. they have put him on sporonox liquid. I brought Mark home from the hospital on the 15th and as i am sitting here at 2:15 am on the 20th i am still spinning from the last 6 weeks of hell and wondering what they will tell us next week when we go see the specialist. It has been a nightmare, this disease losing his job, insurance.. not knowing how or where he got it. our old home had mold and myself and my dog started having severe seizures and respitory problems, it makes me wonder if i have it. In 6 weeks we have gone from a fairly normal middle class couple with children grown and gone to spending every dime we had to keep afloat to both of us having ssi claims in (mine was filed in 06 due to the severity of my medical problems ) his being filed on may 3rd to having to go get food stamps and getting him an emergency medical card to cover his partial lung removal and kidney surgeory( he still has to have another one on his kidneys) and them trying to get mine pushed thru.. we are scared we are going to lose our home and everything we own. We did find out how wonderful our friends and neighbors are as they have pitched in to cut our acreage help us with food medicine help feed our dogs and just being wonderful people whom are a great support system.
 if anyone can think of questions i need to ask the doctor i wwould love to know.. my mind is to blank to work i think
I know i probably left stuff out typing this in but i have been on everyday since i found this site i would appreciate any words of wisdom or if anyone can think what i need to ask the dr next week...
thanks for just taking time to read this as it helped just to get it all off my chest .. God Bless

[sherry]

one more thing we live outside of cincinnati in the east side and do not have a clue where he got it or how long ago he migh thave got it. we have been in this home almost 8 years

[Connie]

My heart goes to you. I had blastomycosis 10 yrs ago. Just keep up with the medication and biopsies to make sure the blasto is all gone. Are they keeping him in the hospital? I was in the hospital for 3 months all together. High fevers will go down to low grade fevers  and probably last awhile. Continue to see the doc and on a regular basis as it can flare up worse again while being treated as it did with me. I had a biopsy done about every other month  once i was out of the hospital until it was gone...17 months later. Get plenty of rest and keep doing what your doing. He will eventually get better.   It does take awhile before getting better. My prayers are with you.
Connie

[sherry]

i appreciate the kind words and advice connie. I just read what you said to mark. they have him home from the hospital now but we have been having fever related problems and i keep thinking it is due to the lung removal. I feel thankful i can just look over at him. He is so panicked over everything, afraid of getting germs due to his lung, scared of what the blasto is doing to him or what other damage it has done. Then you have the whole other factor that with me being disabled we have no way of paying our bills and that is stressful.We are trying to be positive .. it makes me mad when people go  " oh well its not cancer so you should be just fine" I wonder if the mortality rate of this is not higher when you take into account the people that get sick from this and pass away it is not near the numbers like cancer but i keep reading about the mortality rate vs people that get better.. i know what i am trying to say but its not coming out correct.
 but connie it is hopeful that since you are well that hopefully he will make a full recovery

[Connie]

Hi,
 I  had a fever for almost 3 months. I was told I was the first to survive the blasto in this area because all others were diagnosed after death. Your husband being diagnosed and him being at home is a good sign. Just get plenty of rest and keep taking the medication as awful as it tastes until he is blastomycosis free. Take tylenol or whatever fever medication you use for the fevers.If the fevers get higher again go back to the doc . It means he may have to go on another medication for a few days before going back on the itraconasol. I had to go on a med through IV twice for a 14 day stretch .Sorry I can't remember the name of it. The IV bag cannot see any light thus was given to me at night for about 4 hours.

Connie

[Kash-]

All disease cases are different, but I just want to tell you that a friend of mine caught blasto, ran the high fever and wound up in the hospital too.  Luckily, we lived in an area that is a blasto hot spot and the docs knew to look for that first.

My buddy is alive and well.  My dog survived blasto too.  Knowing is more than half the battle and your docs know what it is now, so take heart.

Connie...  Was the med called Amphotericin-B?  Did they call it Ampho-terrible?  Was the IV bag yellow in color?  Ampho-b is yellow, degrades in sunlight and is administered via IV.  It's used as an anti fungal in blasto cases too.

[Connie]

Kash,  I believe that was the med used via IV.  It was yellow and degrades in sunlight. It is a much stronger med than the itraconasol.

[sherry]

I really appreciate all the kind words. It is good t otalk with people whom have had the experience, when we see the specialist next week i have so many questions... did they get it all when they took half of his lung.. where else could it be and how do they know.. how do they know if it is gone... since myself and my dog ( whom has since passed away ) suddely started at our old home with seizures , swelling of the brain breathing issues my poor dog got so sick he had eventually lost all his hair and had neuroligical problems could we have it ... just cannot wait til next week making myself crazy 

[Connie]

Sherry,

Your husband should be fine with the fevers. By now they should be low grade fevers. He's on the right meds.  You asked if the blasto can go somewhere else. I had blasto in both my lungs and I was checked a few times as it can move to the bones I was told. So I would ask your doctor about getting the scan to check his bones. Yes I agree with you the rate for blastomycosis is probably higher as alot of people have died before being diagnosed. Fortunately for you and your husband he has been diagnosed so he will be ok. Unfortunately for you , you don't have coverage and that could be expensive. I live in Canada and all that is covered by our health system. I was checked twice with the bone scan. The blasto only stayed in my lungs.  I have a coworker whos husband had it in his brain and he is ok. Hang in there and take care.

[sherry]

when we were at he surgeons office today he talked about all the lymph nodes he removed and said his whole lymphonic system was infected. i have not read anything on  that and it concerns me... plus he just sleeps all the time. That i know is probably also  to do with lung removal.. Connie you seem  to know alot have you heard about  the lymphonic system being completly infected or is this common and like the rest of it just not finding much.. hopefully i can ask the specialist on thursday but mark gets so freaked out it is hard to ask questions without upsetting him. do appreciate all the advice will ask about the bone scan 4sure

[Connie]

I'm sorry I have no idea about lymph nodes. You have to definatley talk to the doctor about it. I learned alot about blasto from spending 3 months in the hospital. I have some medical background for my job, the nurses would let me read my file which  was really really thick and I asked alot of questions to all the doctors that came to see me. As I was the first patient in this area to survive this. I saw all the doctors around here. I'm here for yous for any support. I had no one to talk to when I had it. It is really nice having this.

[louie]

Hi Sherri,

I am sorry to hear of this terrible news for you and your husband.  I want to share that I had a similar experience 2 years ago.  I was told I had cancer, they removed the lower lobe of my left lung and then discovered it was a blasto.  I was lucky to be completely cured with Itraconozole.  since that I have been pitching my story to law firms to attempt to sue for the unnecessary lung removal.  A lung biopsy would have revealed it.  Or a PET scan.  Or sputam test, but none of these were done and I was told it was imperative to have the surgery asap.  Now I have nerve damage from the surgery itself, which has caused a whole new set of problems.

Know that it is possible for your husband to be cured, with the right meds.  It seems that his case is somewhat worse than mine, so I imagine he is on amphotericin instead if itraconozole.  If he can tolerate the meds, I believe he will come out all right.

Can his employer let him go just because he was sick?  Is there any chance of fighting that?

also,  I went through all of the worry about whether or not I could have caught this from a moldy basement, etc.  My research, and the doctor's answers, have been "no".  This fungus resides insoil, in decaying vegetation.  He didn't get it from a moldy environment.  Any you can't catch it from him, either.

I wish you well.

[csutherland]

Sounds like a very rough deal with the job loss, etc.  Fortunately we were already retired when Jerry's Blasto popped up last summer.  And, miraculously, the contract labor that he does on the side completely dried up for the 6 wks or so that he was at his worst.  He would've been very upset if he had had work waiting for him that he didn't feel like doing.

He never had that high of a fever; it was only about 101 or so, but he was run around for several weeks with a diagnosis of pneumonia, then they decided he might have non-hodgkins lymphoma, then pre-cancerous cells in his larnyx, and on & on.  Suddenly 2 wks after a bronchoscopy a phone call came saying there was "yeast" growing in the culture and a few days after that the diagnosis of Blasto. We don't know where it came from but he has been on Itraconazole since mid-Oct and a CT scan last month showed a smidgeon left in the left lung so the anti-fungal will be needed for another 6 mo.  He has felt fine for several months now and there have been no more symptoms or skin eruptions other than the one on his arm.

It's very hard to diagnose I guess and I'm so sorry your husband had the lobe of a lung removed.  That's terrible.

[Doris3175]

Hi, my brother died 2 years ago from Blasto.  We later found out it came from his house; which has now been demolished.  I would recommend that you get your house inspected by a mould specialist; which here costs around 500$.  Unfortunately insurance company don't cover damages for mould.  Hopefuly your husband will get better and you too.  If you haven't read it yet I have a post about it "Blastomycosis in Northern Ontario" and a few others.

God Bless!!

[sherry]

well just an update now.. i keep wanting to get on but mark has bee feeling bad and it is a full time job to take care of him.
    they had to take him off the sporonox because of the side effects.. i am going to call the specialist on monday to see where we go.
My neuroligist said i should bring him to a autoimmoligist because he thinks there is an underlying problem..

  Louie, they did do a pet scan and told us it was cancer and a biopsy which they did but could not get a sample ?? it is so tiring as you all know. when we were at the drs on friday we were told he is running a fever still and he gets so hot n cold. when he gets cold as soon as he puts the blanket on he gets so hot he cannot stand it so he takes off the blanket and freezes.. his white blood cell count is off and he is losing about 1lb a day.. then there is the blood in his urine due to his kidney problem. He has also been very nausous hence the not eating i guess.. i am really worried and i do not like the disease control dr. She said he should only need to be on meds for 2 months max.. and she got upset that i contacted the cdc. I think he wil need to be on meds longer 2 months, i really have no faith in her i do not think she knows enough about it and when a dr gets aggitated over me contacting the cdc and sidesteps my questions it does not make me feel confident in  her.
Mark has talked about sueing but i am sure hat the drs have covered themselves very well so we would never be able to sue over a wrong lungectomy ...
 Thank you everyone for being here to listen