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jzirzow



Joined: 28 Apr 2013
Posts: 25
Location: scottsdale, az

PostPosted: Sun Apr 28, 2013 11:16 am    Post subject: new to valley fever survivor Reply with quote

My name is jenny. I am new to the group but not to valley fever. I was diagnosed with valley fever but was not treated as my antibodies were too low. I wish someone told my body that... I had years of shortness of breath and by last year was at my breaking point. I went to a new Dr and had xray/ct and was diagnosed with large cavitary lesion in my right lower lobe. I started treatment in July on fluconazole and by Oct after no improvement had partial lobectomy. I was taken off the meds following surgery and within a month was having same symptoms. The disease spread to my other lung and possibly the skin. I had surgery out of state to be with family and I'm back in arizona now. I have an apt with Dr. Galgiano this week and was hoping someone can tell me what to expect. This has been a long road and I know the journey is far from over. I just want my life back. I was terminated by my job post surgery. I was a pediatric trauma nurse prior to getting sick and had been for over 7 years. One can only hope funds for research come so a cure can be found. The government needs to get involved and stop making excuses such as valley fever just doesn't kill many people. Is that what they are waiting for... besides what about all the able body people are being destroyed by this illness. The suffering is so needless and we all deserve better than that.
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LindaA



Joined: 07 Jun 2012
Posts: 65
Location: Surprise, AZ

PostPosted: Sun Apr 28, 2013 5:25 pm    Post subject: Reply with quote

Jenny, here we are going on and on about reducing health care costs and offering healthcare to EVERYONE, but the fact is that Valley Fever patients are almost in the same boat as the uninsured. We do not get good healthcare because it isn't sexy enough, fatal enough, or widespread enough for research. Maybe worse because we get told conflicting things while our conditions worsen. As my pulmonary doctor said, it's LIFE CHANGING.

I can't believe what I've cost Medicare and my supplemental, and those heavy costs will multiply over time with endless CTs, bloodwork, Dr visits, medications, and procedures. My medical costs are unbelievable. There is also a societal cost. You were educated and trained to be a pediatric nurse and you have considerable experience. To lose those public and private educational investments as well as your experience is costly. So is disability or other public assistance to some of those stricken. On a personal level, we're thinking of moving again, and that will cost us hundreds of thousands in home values, realtor fees, moving costs, fixup, furnitures, etc. You can't even measure the cost in quality of life. I don't even take walks here in AZ anymore. I'm housebound with indoor air purifiers. I also fear this disease and all of its unknowns. I try to be normal around family, but it's sometimes difficult. I missed my great-grandson's first birthday held in a local park. Meanwhile, AZ continues welcoming seniors like me from other states and bulldozing dirt for 303 without warnings posted.

I'm glad you're on this site. You understand from both the positions of medical professional and patient. Keep us posted re: your situation.

Linda
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jzirzow



Joined: 28 Apr 2013
Posts: 25
Location: scottsdale, az

PostPosted: Sun Apr 28, 2013 6:43 pm    Post subject: Reply with quote

Linda,
Thank you for your thoughtful response. You made so many points that apply to myself and made me feel understood. I understand what it feels like to hide or attempt to hide how you feel from family. By nature i am a caretaker and dont want to burden them. The truth is im scared to death and desperate for answers. I want to pretend im ok sometimes but there are constant reminders. I have swelling around my lobectomy site with back pain, remain underweight from the illness and treatment, and suffer with the lesions. The back pain is difficult to hide and has gotten worse. I had this pain when i was diagnosed so i feel that sense of doom again.
I also understand not wanting to go outside and wanting to move. I have considered it but given medical bills, cobra, and related expense i need to wait. I have applied for nurse manager jobs in the valley and i am in contention for nurse director of a county program. This disease has had many costs on many levels. For myself, i will miss working at the bedside but i know i cant any longer. I have always wanted to be a nurse and after only 10years, i feel my dream slipped away with valley fever.
I get so angry that there basis for not funding research. I was a research nurse and i know the politics but do not condone them. Drug companies worry about profit, government worries about budget, and so on. We as a society need to change our thinking and worry about those infected or who will be and have empathy for their suffering and societal losses. People in epidemic areas need to ban together and fight for research. I was thinking every grocery store in epidemic areas should do "a round up for valley fever research." It seems like so little to ask people to round up to a next dollor but it would add up. I would love to see the government do something but i have doubts with all the budget cuts. Sadly, if they truely understood the disease and its impact the research would be going on now. It is my hope as a nurse and a vf patient to be a voice for all the people with valley fever.
Thank you again, linda. My thoughts are with you and i send you well wishes. I am sorry this disease has taken some special moments from you and will force you to move. You deserve better... we all do. This disease causes so much suffering and is so misunderstood.
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kat



Joined: 30 Dec 2004
Posts: 912
Location: Creswell, Or

PostPosted: Sat May 04, 2013 4:56 pm    Post subject: Reply with quote

I'm so sorry to hear that you are going through so much. I just wanted to ask about your back pain. Where is it located? How long have you had the back pain. VF can also attack your bones or your spinal fluid. If it has gotten into your spinal fluid you would be very susceptible to getting cocci meningitis, which is the deadliest form of VF. You might consider having a lumbar puncture to rule it out. If you have it, you need to know asap. My brother died from this.
I don't mean to scare you but you need to know the facts. Please let us know how you are doing.
_________________
God Bless you and keep you,
Kathy
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jzirzow



Joined: 28 Apr 2013
Posts: 25
Location: scottsdale, az

PostPosted: Sat May 04, 2013 5:16 pm    Post subject: Reply with quote

Kathy,
I am so sorry for the loss of your brother. My brother and I are like best friends, so I can only imagine your pain. I had a VATs procedure to remove my lung in Oct 2012. During surgery they had to remove a portion of my 6th and 7th rib and manipulated the trapezoidal muscle in my back. I believe the pain is in the muscle and resected ribs and I get major swelling in my back from it. I mentioned it to Dr. Galgiano but he didn't think much of it and didn't look. He did get new titers and ordered skin biopsies. He talked to dermatology but they can't see me until Friday. I worry about this because the few lesions I have are now abcessed. I worry about letting this go a week. He is waiting for results and will go from there. I guess I'm just worried... every time I bring something up I am told don't worry. I think to myself I did that originally and ended up with nearly a 3 inch cavitary lesion. I start a new job on the 28th and need to be feeling better. I will be working with sick patients again and need my body ready to fight infection.
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kat



Joined: 30 Dec 2004
Posts: 912
Location: Creswell, Or

PostPosted: Sat May 04, 2013 6:58 pm    Post subject: Reply with quote

Jenny,
Thank you for your kind words. Yes, my brother and I were very close and it was hard. I stayed in CA for several months to care for him. Then we moved him and my mom here to Oregon. He died in my home shortly after arriving here. He was so glad to be here instead of the hospital.

It's easy for other people to say don't worry, they aren't the ones living with it. I'll keep you in my prayers.
_________________
God Bless you and keep you,
Kathy
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jzirzow



Joined: 28 Apr 2013
Posts: 25
Location: scottsdale, az

PostPosted: Sat May 04, 2013 8:19 pm    Post subject: Reply with quote

Kathy,
Your story really touches my heart. I'm glad you could be there for your brother in his time of need. People with this disease need to feel understood, supported, and able to share the fear of this disease. Very few people understand what you do about the devastation that comes with vf.
I am a nurse and have done vast research on vf for the past year and what I learned is no one has a solid understanding of this disease medically speaking. Some know more than others but what it comes down to is that every case is different as is the prognosis. As you said, its easy to say don't worry when it is not you but when it is all there is worry. Often you feel like a test subject, perhaps we all are. How can anyone say don't worry when they can't predict the course of the disease? I often don't know what to tell my friends or family when they ask how I feel. The truth is they thought the lobectomy was the answer as did I. Now with the disease spreading I don't know what to say, feel or think.
Thanks again for your words of hope and for sharing your story.
Jenn z
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