Author Topic: Looking for Survivors to tell their story  (Read 8822 times)

Offline Kathryeb

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Looking for Survivors to tell their story
« on: December 13, 2011, 11:05:05 AM »
Hi!
I am a Producer on a show for Discovery and I am looking for stories to share. The show I am on is spotlighting rare illnesses/disorders and my goal is to spread awareness about the disease and to help people feel like they have a support system and that there is hope.
I understand that it's a scary and sensitive thing, but if you're willing to share your story, please email me at katy@mikemathisprods.com
Thanks and I look forward to sharing your story.

Offline Cathy, Bailey and Duke

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Re: Looking for Survivors to tell their story
« Reply #1 on: December 13, 2011, 08:57:04 PM »
It would be amazing if you could spread the word about Blasto! There are so many people and dogs that get this in our area! I live in Nestor Falls Ontario. We are a small town of 400 people. Both of my dogs have and it and My Duke has had it twice.  There are also people in my town that have had it.
  With in about a half of mile of my house, I bet there has been 10 dogs that have died of blasto.
  We live about a an hour from another a real hot spot of Kenora, Ontario. Many people from Kenora also have contracted Blasto.
  Good luck in finding someone to tell their story! It is one hard thing to beat!!! Spreading the word will save lives of people and dogs alike!
  There is also a Blasto page on Facebook where many people have told their story.

Offline 2timeblastosurvivor

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Re: Looking for Survivors to tell their story
« Reply #2 on: June 27, 2012, 09:20:48 PM »
I am a two time survivor of this deadly disease and believe me when I say to always take care of yourself and get yourself checked if you feel any signs of Blasto . But that's the thing ... blasto disguises itself as alot of things from the flu to a common cold ..... they might say that it only appears in Dogs think again .... I have a huge story to tell about my encounter with Blasto if anyone wants to hear about it I'm here to tell it and to educate and help anyone who thinks they might have it

Offline blastowarrior

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Re: Looking for Survivors to tell their story
« Reply #3 on: July 31, 2012, 11:26:27 AM »
I am a survivor of blasto and wanted to let you know that there is also a group on Facebook the name is  I HAD BLASTOMYCOSIS. Its a rather small group, but it could certainly use more members and to help each other spread awareness of this disease. It seems that i see more topics of this on pets and animals, and know that more people have gotten this as well. I was faced with this in 1995, and was sick for 6 months before i was correctly diagnosed.

Offline cupcake105

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Re: Looking for Survivors to tell their story
« Reply #4 on: December 01, 2012, 11:13:02 PM »
Im surprised when you say you live an hour from that hot spot Kenora because I have suffered blastomycosis also and I live an hour from Kenora just inside Manitoba  there seems to be very little admission it even exists here.

Offline meka36

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Re: Looking for Survivors to tell their story
« Reply #5 on: February 22, 2013, 08:56:28 PM »
I fell seriously ill on nov.26,2012 i went to a local hospital were i was diagnosed with pnuemonia and placed on antibiotics for a week. After a week i still was very ill i went back to the hospital were i was told again i had pnuemonia and was given a different antibiotic for a week a week went by i was still ill. I then went to the doctor and was diagnosed again with pnuemonia and put on another antibiotic. Two days later i went to another hospital and finally admited dec 6 2012. Four days later they diagnosed me with histoplasmosis the doc perform a test were they tested the sputum out of my lungs i was put on sporanox 200 mg twice a day. I was released from the hospital dec 13, 2012 I took a cat scan feb 28 2013 and on feb 21, 2013 the docs told me i was misdiagnosed instead of histoplasmosis i have blastomycosis. Finally a correct diagnosis

Offline angela_sabbatini

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Re: Looking for Survivors to tell their story
« Reply #6 on: March 17, 2013, 10:54:31 AM »
My long term boyfriend has been fighting Blasto since April 2011. He was miss diagnosed several times being told he had bronchitis and then pneumonia. August 6, 2011 he was hospitalized and diagnosed. He had a severe case and was put into a medical induced coma almost immediately, he remained in a coma for 30 days. The doctors had given him a ten percent chance to live. In that time, he got ARDS from it, his kidneys failed from the anphem b and was placed on dialysis and had blood transfusions. He suffered from 16 pneumothoraxes which resulted in him having the lining of his left lung removed and a small portion of that lung removed from having hard granulomas in it. By the grace of god, and the power of our prayers he started to improve and was released from the hospital after 57 days. After learning how to walk he still noticed pain in his knee that he had had previously before he got admitted to the hospital. They looked at his knee again and found that it had also settled in his femur bone. He has had 3 surgeries to grind it out and so far looks like it is gone from the femur. To this date, he still has positive results and continues to take Voriconazole. We are grateful that he has recovered the ARDS and most of the blasto damages, but hopefully the positive results will be over soon, it has been almost two years that we have been fighting this scary disease.
I wish I would have known about this site earlier and I'm glad people are making awareness about this disease. It goes miss diagnosed a lot because it presents similar to other conditions. I hope and pray all the time that no one gets it this bad because they usually don't survive when it gets to that point. We are from Northern Wisconsin and there is many cases in the surrounding areas every year and the ones that have dealed with it as severe as my boyfriend had it are not here to talk about it :'(  We are truly blessed!!!! Angela 

Offline joyace

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Re: Looking for Survivors to tell their story
« Reply #7 on: July 15, 2014, 08:29:52 AM »
would love to hear from you about this. still in the process of the cure

Offline cheekmoore

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Re: Looking for Survivors to tell their story
« Reply #8 on: November 27, 2014, 11:51:06 PM »
My name is Mike and in March of this year I was diagnosed with Blastomycosis. At first the ER sent me home with pneumonia and some medicine, but my breathing just got even worse and really don't remember the next 12 hours. I went back in the next day sicker than I've ever been and they took me in and did several more tests on me for two more days. After a 2nd opinion I was then sent immediately to Regions hospital in Minnsepta  by ambulance. Took a number of days but after I finally coughed up some sputum for the, to test (at the U of Texas) they found I had Blasto. I was given ampho and I had an allergic reaction so they gave me the ampho-b and it finally started to work. I was in an induced coma for about 7 weeks. I was put on a vent and an ECMO machine with blood transfusions. Was given a trachea and after I came through I had to learn to walk, talk, swallow and continually be reminded of where I was and what had happened.
The doctors believe I got it several months before up at the North Shore. I missed my baby's birth by 6 days.