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[pjh]

My daughter was digonised with blastomycosis. She is twenty two years old.  She went to the doctor in our home town, lexington, tn.  The doctor told her she had phneumonia and sent her to the hsopital on 2/18/11.  She spent the night and was released the next afternoon about 4:00pm.  She felt like she might feel some better but not a lot. The following Monday they called her and told her they wanted her to come back to the hospital.  She went back that afternoon about 6:00pm.  The put her back on the antibotics.  She still was any better on Wednesday so we were planning on having her moved to Jackosn General in Jackson, Tn.  The did another x ray on her that morning and it looked worse that it did when she went in on the previous Friday.  The doctor said she did need to be moved so they transported her to Jackson General by ambulance.  When she got to Jackson they said her right lung wasn’t even working.  They also started treating her for pheneumonia.  She still wasn’t getting better so after a day and a half they did a sputum test and dignoised her with blastomycosis.  None of us had ever hear of it before.  They started treating her for blasto.  She wasn’t getting any better so they put her on a ventilator on 2/28/11.  She was still showing little progress. On 3/3/11 the said her x ray actually looked a little worse.  3/7/11 was the first day that her x ray looked any better.  The nex couple of days the said it may be a tiny bit better.  Then the next few days it would stay about the same.  Today 3/11/11 they did a tracheotomy on her.  So far see seems to be doing ok with it.  She pulled the vent out twice when she was on it.  They are going to start cutting back on her sadation meds. I hope her x rays start showing more improvement soon.  she has been in Jackson General in icu for seventeen days as of today.  She spent four days in Lexington hospital befor she come here.  They say she has a very long way to go. They say they have one and maybe sometimes two cases of blasto a year but her’s is the worse case they have had. We have no idea where she got it.  But she ha  had a low immune system since she was a early teen.  Most of the people I know have never heard of blastomycosis.  I pray that she gets better soon.  it is so hard to see you child so sick.  I have never felt so helpless in my life.

[woodstalkbaby]

I'm sorry to hear all you have been through. This is the hardest thing our family has been through. This has been going on since mid Sept. 2010 and Kayla will finally be going back to school half days after spring break. She will still be home bound in the afternoons because of her physical theropy and dr. appts but it is a great turning point. Looking at the positive side our family has never been closer and stronger. I understanf what you are saying when you say you feel helpless cause that was bw when this all began. God is a huge part of our lives and he knows what he is doing. praying for your daughter to get better. Becca

[pjh]

thank you so much for the incouraging words. i don't know whai i would do if i wasn't trusting in God to take care of this.  i know the battles we face make us stronger.  as you know it's very difficult to see your child sick no matter what age.  she has a 2 1/2 year old that she is really missing.  they are not use to being away from each other.  i haven't left the hospital since she's been here but my son n law does bring her sometimes and i do get to see her.  we're not letting her see her mom in this condition though.  i'm so glad this post was here today because today has been expeccially hard for me for some reason.  i guess because i am missing talking to her so bad.  we have always been very close.  they have got her off one of the sadation meds though.  here vent is down to 40%.  the x rays still aren't showing a lot of progress.  she is waking up.  she gets flusterated because we have a hard time making out what she's trying to say.  hopefully soon she will be able to write.  she  tried this morning but was too weak.  it''s hard to believe something you've never heard of creeps in and seems to take over your life.  it's has been a little over welming at how many people we have praying for her.  i know it's good to have good doctors but God is the great physican.  i hope you daughter continues to get stronger every day. i had read your story.  i will keep you family in my prayer.  onece again thanks for the post.  i really needed it today.

[Teddy]

So sorry to hear your daughter and your family are facing Blasto. It is a very serious disease, as I am sure you have gathered,by now.  My husband, niece and our family dog where all diagnosed in 2009. If it had  not been for our vet diagnosing the dog first I am sure that my husband and niece would have died from the disease or suffered a very long time before being diagnosed. With such severe lung involvment, I am curious what drug treatment your daughter is receiving? My husband was given a drug called Amphoterin B. The drug is not tolerated by everyone, but for severe or advanced blasto cases this course of treatment is used most often in our part of the country and in Northwestern Ontartio (Kenora Ontario, in particular) where the incident of the disease is very high. I would encourage you to read my past posts on the "Human" side of this board as I describe the measures taken to premedicate and help my husband accept the AmphoB I.V. treatment. Although my husband had a severe reaction and ended up only being able to receive 5 of the originally 18 prescribed treatments his Infectious Disease doctor believes it was these 5 treatments that SIGNIFICANTLY shrunk the Blasto that had filled one entire lung and almost half of the other.  I wish you and your family all the best with this Blasto battle. We where very lucky to have ended up with a great and experienced doctor from the Infectious Disease Department at SMDC Duluth, I hope you too find good care and recovery.
Jennifer

[Teddy]

IV Ambisome (Ampho B lipisome) - sorry should have included this name as this is the way the medical professionals refered to the drug. Again, best thoughts and prayers for your family.

[pjh]

they were treating her with amphoterin b and flucanazole.  she started breaking out in a rash friday.  she had a round today but the nurse said they had stopped giving it to her this evening because of the rash.  her lung and infection specialest were off this weekend but will be back in the morning.  all her vitals are good. the progress on the x rays seem to be a very slow process.  actually she was dignoised fairly quickly.  after reading all the stories that kind of shocks me.  it is so hard watching her be sick day after day.  they have taken her off all sadation meds so she is more alert now but i bothers me not being able to figure out what she is trying to tell us.  i just want to take her in my arms and never let her go.  how long was your husband and niece in the hospital.  they said they have treated it here before but hers is the worse case they have had.  i pray that you family continues to make progress.

[Teddy]

My niece was hospitalized for 6 weeks, 4 of them they did not know what they where treating, she was air ambulanced to a major medical center where she was finally diagnosed and began treatment. My husband spent a total of 12 days in hospital. It sounds as though you have had a much longer go at this in hospital. I hope you have some relief soon. When the horrid rash showed up for Chuck all we could think was if this is on the outside, what are his insides looking like? It was a very uncomfortable, painful experience for him. I'm sorry your daughter had to experience that. Hang in there, you're not alone!

[Connie]

Hi sorry to hear that you have to go through this. I had blasto. I hope you have read my story on here. have lots of patience. Lord knows we had to have it. I was  was airlifted twice to a bigger hospital and spent a total of three months in the hospital and on oxygen for 2 months. I was off work 17 months. It will get better. I have been blasto free for 10 years now. As you, this had brought my family close together. I did the IV twice for two  week periods and itraconasole for the whole 17 months. just keep taking the meds, it can be a long progress and its a good sign they caught it. My thoughts are with you.

Connie

[Lolasmom]

Oh my goodness.  I couldn't even imagine having to deal with this terrible disease if it were my son instead of my dog.  God bless you.  We are in NW Alabama.  It seems like there are quite a few cases in our neck of the woods lately.  Please know we are sending prayers your way.

[pjh]

today 3/16/11 is our 22nd day in icu at jackson general.  they think the rash is from the meds.  my daughter actually said it isn't itching.  the rash hasn't really caused her any problems other than it looks really bad.  she was dignoised pretty quickly here.  she spent four days in our local hospitla before the twenty two here.  yesterday they had to put a chest tube in because she had a small hole in her upper left lung.  it had already repaired today but they want to leave it in a few day for precautions.  they changed her from the strongest med today to the next one to see if that's what's causing the rash.  her vent is actually on c pap mold beginng today. which is great.  all her vitals are good.  seems like it is just taking a while for the x ray to look much better.  they sit her up on the side of the bed today for the first time.  she is off all sadation meds and isn't restrained any more.  i feel like it is taking longer with sam because she has had problems with her immune system since she was a teen.  they are planning on checking on why her immune system is so low when she gets well.  the progress has been slow but as long as she is making progress we will just keep pushing. i just don't want her to get too down during all this.  she is missing her little two year old girl really bad.  i don't know if she really realizes how long she's actually been here. just please keep praying for our family expecially sam.

[pjh]

yes i did read your story.  i have read evey thing i can find on blasto.  it does help to be able to hear from people that have actgually had experience with it.  most of the people i know as myself had never heard of it before.  thank you so much for your incouraging words.  hope you continue to do well and stay blasto free.  God bless you and your family. 

Thanks
Pamela

[pjh]

thank you very much.  it is very difficult to see your child so sick.  it's something you really never think about happening.  it has been a long rough road and don't know how much longer it will be.  i do know God will see us thru. please continue to pray for my daughter and our family.

Thanks
Pamela