Lost my mom to aspergillosis

[danamaria126]

On Monday morning my mother passed away. She had lung cancer twice. One in 2007 in her right upper lobe. She had a lobectomy. In 2009 it came back but she needed only radiation. Since then she's been clean. In 2013 she was diagnosed with aspergillosis. Over time though, this fungal ball, took a toll on her body. She was on voriconazole for two years. It beat up her body and her weight loss was just something unimaginable. The last two weeks of July my moms disease took a turn for the worst. The amount of blood that came out of her was something like I never seen before. She came down with a staphylococcus infection and was sent home on IV antibiotics. Naficillin and Voriconazole. She had a PICC line in. My family and I thought she would get better and everything would go back to normal. However we were very wrong. She declined quickly. The Saturday before she passed away she told me that I'm ready to go be with God and that her fight was over. I found her Monday morning with her eyes closed.

[sumpy]

May she rest in peace. Are thoughts are with you

[Northern-soul]

So sorry to hear about the loss of your mum. Aspergillosis is a terrible disease that many are completely unaware of.

My thoughts are with you.

Carolyn x

[Cndconner]

I am so sorry for your loss. It's so hard to lose someone so close to you. My Mom is going through the exact same thing as your Mom. She was diagnosed in Florida with cancer they put her thru 70 radiation treatments. I took her to live with me in California so I can take care of her. The Drs here don't believe she had Cancer cause they never did a biopsy or a bronchoscopy in Florida. They did the tests here and the pathology report showed no cancer but they diagnosed her with aspergillosis. She's been on vorinconizole for about 3 months now. I slightly see progress. On Thursday she goes in to talk to a therasic surgeon to see if she is a good candidate for the lobectomy of her upper right lobe of her lung. We are at the Drs mercy. We have no idea if this medicine will work and give her a few more quality years of life. Reading your post worries me. Did the lobectomy help your Mom or did it make her worse? This has been so scary for all of us. I am so sorry she suffered with this horrible sickness. I know what you and her went thru and my heart melts for you both. I am so sorry. I will be thinking of you all week...Our Prayers are with you and your family. God Bless You and Your Mom

[danamaria126 in reply to Cndconner]

Her lobectomy was done in 2007. She was diagnosed with the aspergillosis in 2013. It grew where the line was taken out because it's a warm moist area so in a way it helped the cancer but caused the growth of this fungal ball. What a road she was on. She was suffering towards the end. Ps- I did some reading. If you didn't know this, sugar feeds the fungus. So watch your mom if she likes sweets

[Cndconner]

I am so sorry she suffered..that must of been so hard on both of you. This has been one big guessing game for us. I have been trying to get my Mom to stay away from sweets but one Dr mentioned to her that she was happy that she was at least eating and I wish they would of never told her that cause now she argues with me about it. We go in Thursday to see if she's a good candidate for the lobectomy. She has no energy and wants to sleep all day and night on and off but she won't leave the house and she was never like this before. Thank you for responding. I am so sorry you had to see your Mom suffer and I am so sorry she passed. Prayers to you and your Family. It has been a tough road for all of us. This disease is no joke

[danamaria126 in reply to Cndconner]

Yea it was just indescribable. My mom slept all day as well. The weight loss was just so quick and dramatic. My mom was 115 pounds soak and wet. She literally lost like 20 pounds. She was like 80 before she died. For the longest time though her weight went up and we thought everything was going to be okay. But it just became worse. So I actually am just holding her urn right now. I'm only 26. My mom was 55. Too young. Way too young

[Cndconner in reply to danamaria126]

She Will Always Be With You. Too young is right. I was going to ask you how old she was. I am so sorry your hurting right now. My Heart melts for you. It is so hard to lose someone so close to you especially our Moms. Stay strong and remember she is always with you. My Mom is almost 72. She has been suffering with this for a long time. She had a brain tumor removed about 7 years ago and survived 4 surgeries cause they couldn't get her incision to heal and now this. It's been one thing after another. 70 radiation treatments and struggling to breath for at least 7 years now. She's a strong Italian woman and being so sick and in and out of the hospital has taken a huge toll on her. Her body has weakened so much. I am Praying the surgeon says there's hope. If not, I don't know where we are going to go from here.

[danamaria126]

Before my mom passed she said if anything happens to me, i want an autopsy. We did that for her. She always thought there was more going on. It's just been a rough week. It's gonna get harder. I mean I knew she wouldn't last a year but I didn't think it was going to be this fast. She was ready though. She was so tired of fighting. I knew the fight was over. I just feel bad for my dad being alone. My mom was Italian too. How funny. All she did was drop "f" bombs. Hahah. She was a spunky woman too. My house has been non stop filled with food and cards and cakes. It's just been helpful during this time but isn't that same. Wish she was here but I'm glad she's not suffering anymore. I hope all works out for your mom. She's on my thoughts.

[betsyzimm1972]

I'm so sorry for your loss! Will be praying for you. So good to hear that she knew where she was going and that she was at peace!

[Mariongisela]

thinking of you.... It is a very nasty disease - that few have heard of and can understand.

Take care of yourself.

Marion x

[freefaller]

So sorry to hear your story. My thoughts are with you at this sad time.

Xoxoxo

[ylmwelch]

I'm so sorry for your loss, it's so hard to give up your parents. She isn't suffering anymore, hold that and sweet memories to get you through the coming days and weeks

[CUSHYCOLE]

I am sorry for your loss-I almost didn't wan to open this post but it is a reality. I am so surprised that there is not a better treatment or plan in action from the medical community with regards to mold.

[JILLWAGNER]

I am so very sorry about your mom. I am an Italian mom so everyone relied and depended on me. My daughter is an RN and I have 3 grand children and my son in law. Thank God they are okay. My husband is in fair health. I am 56. I just don't want to suffer. The sad thing here is that a lot of doctors don't know a lot about it. I am blessed as I go to USC doctors & It really has to to with your immune system I had a spinal revision in July 17 and when I woke up they told me I had a collapsed lung. I went the next week to see a lung specialist. I had a broncosopy and it cultured for Aspergillosis. I am now also seeing a immunologist. I just did a bunch of tests. She believes that I have Adult onset of Cystic Fibrosis. I will find out next week. Please pray for me.

[danamaria126 in reply to JILLWAGNER]

Oh my! My thoughts and prayers go out to you! Yea she was so depleted anyways. She was a smoker, had COPD and emphysema. She had the lung cancer come back twice. It was Squamos Cell Carcinoma. It was a very rough road for her and my family. I really hope and pray everything works out for you!!! ❤️

[Shmicra]

Sorry for your loss. It must have been hard for you to see the decline in your mum. Take care.

[GAtherton Administrator Fungal Infection Trust]

Very sorry to hear of your loss danamaria. I work for the National Aspergillosis Centre in Manchester, UK so we are very familiar with the symptoms of weight loss and bleeding for some people and the trauma it causes them and their family. It can be heartbreaking.

We work every day to try to make the lives of our patients better and our researchers are making rapid progress to discover the genetic causes - if you are interested see our support group at facebook.com/groups/aspergi...

One day we hope there will be no more losses like yours.

[Drnkmkr]

I'm deeply sorry for your loss and will keep you in my prayers. May God give you comfort and rest.