Forum Replies Created

  • virginia-currie

    Member
    December 9, 2022 at 1:54 am in reply to: The Harsh Realities of Lung Transplantation

    My name is Virginia. I am one of those that didn’t opt for lung transplant. I was diagnosed last year with CHP (Chronic Hypersensitivity Pneumonitis) after I underwent a lung biopsy. I went downhill after lung biopsy. My pulmonologist said it was a rare case.  I am an RN. I went back to work 6 months after diagnosis and lasted for 1 year.  Work rejuvenated me but my oxygen need has gone up to 6-7 liters.  I am always short of breath even a few feet of walking. I wanted to work as much as I can for medical insurance but my symptoms of coughing and shortness of breath were noticeable by patients. It is a disservice to my patients having a nurse worse than them.  I decided to file for disability.

    Prior to all of these, I was offered a lung transplant.  I rejected the offer and that was my choice.  I am a single and just turned 65 yo now which is shadowed by two critters. My constant companions!   I was used to be independent and this illness limited my ability to take care of myself.  My biggest disappointment is to be taken care by family members who have problems of their own.  We are aware that they may be complications associated after a transplant.  I was started in immunosuppressants and it was not a great journey.  I don’t want to be a pessimist but not considering a transplant is my choice.  I have poor emotional, financial and social support.  At times, I want to end my life but because of my religious upbringing, it is not my decision to make but my Supreme Being – God.  I saw a lot of death and dying in my profession.  It traumatized me silently.  Hospice is considered now not because of end of life issues but comfort and care.  I still try to do stuff as much as I can but with great difficulty.  People have reasons why they opt for lung transplant.  I chose not to consider lung transplant. This CHP seems to be a life sentence.  I am telling myself God has a reason why this was given to me.

  • virginia-currie

    Member
    December 9, 2022 at 1:50 am in reply to: The Harsh Realities of Lung Transplantation

    I am one of those that didn’t opt for lung transplant. I was diagnosed last year with CHP( Chronic Hypersensitivity Pneumonitis) after I underwent a lung biopsy. I went downhill after lung biopsy. I am an RN. I went back to work 6 months after diagnosis and lasted for 1 year.  Work rejuvenated me but my oxygen need has gone up to 6-7 liters.  I am always short of breath even a few feet of walking. I wanted to work as much as I can for medical insurance but my symptoms of coughing and shortness of breath were noticeable by patients. It is a disservice to my patients having a nurse worse than them.  I decided to file for disability.

    Prior to all of these, I was offered a lung transplant.  I rejected the offer and that was my choice.  I am a single and just turned 65 yo now which is shadowed by two critters. My constant companions!   I was used to be independent and this illness limited my ability to take care of myself.  My biggest disappointment is to be taken care by family members who have problems of their own.  We are aware that they may be complications associated after a transplant.  I was started in immunosuppressants and it was not a great journey.  I don’t want to be a pessimist but not considering a transplant is my choice.  I have poor emotional, financial and social support.  At times, I want to end my life but because of my religious upbringing, it is not my decision to make but my Supreme Being – God.  I saw a lot of death and dying in my profession.  It traumatized me silently.  Hospice is considered now not because of end of life issues but comfort and care.  I still try to do stuff as much as I can but with great difficulty.  People have reasons why they opt for lung transplant.  I chose not to consider lung transplant. This CHP seems to be a life sentence.  I am telling myself God has a reason why this was given to me.

  • virginia-currie

    Member
    October 25, 2022 at 2:45 pm in reply to: How to Decide When to Stop Working with Pulmonary Fibrosis.

    this is a follow up of what I sent to you before.  I am now on disability due to a worsening of  my condition.  I stopped working since end of July and now my life is so difficult to deal with.  I sleep late and wake up late. When I walk even with oxygen, I become so short of breath.  I’m still taking Ofev but the symptoms of this disease hasn’t changed.  I wish Ofev could minimize the shortness of breath so my life may be bearable, I am able to cope with belief in Jesus Christ.  My two lovable  doggies keep me company day in and day out.  I am not able to walk them anymore.  I have. I thing to hope for but to just live each day at a time.

  • virginia-currie

    Member
    October 4, 2022 at 7:33 pm in reply to: Why the Word ‘Rest’ Triggers Me

    Rest is not a solution.  People think that I can enjoy life by staying at home and not working.  When I was working as a nurse, I’m able to cope with the side effects of coughing and shortness of breath until I became stressed from taking care of patients.  I felt I was deserving them.  I was so focused with shortness of breath and cough that I cannot concentrate with being a nurse.  I am on disability now.  I cannot be sicker than my patients.  However, staying away  causes me intense emotional distress.  Reading this forum eases my mind that I’m not alone in this battle.

  • My condition has gotten worse. I stopped working because of severe shortness of breathing can’t even go to groceries unless they have a cart scooter.  I have to wear oxygen around the clock now. I can’t even walk my dogs anymore. I’m imprisoned in my own home because walking inside my home causes me to miserably short of breath.   This condition is very debilitating.  With severe nasal and oral secretions with intense coughing, I feel that I wanted to die.  This is indeed a life sentence. I may not be able to help but through this forum, I’m able to pick up good ideas to ease my discomfort.

  • virginia-currie

    Member
    July 5, 2022 at 3:40 pm in reply to: Is My Disease Worsening?

    I’m sorry to share my dismay, I just need to vent my feelings in this forum.

  • virginia-currie

    Member
    July 5, 2022 at 3:38 pm in reply to: Is My Disease Worsening?

    there are good and bad days mostly bad days at work and home.  Ofev delays the progression of the fibrosis but my shortness of breath is unbearable.  I work as a night cardiac nurse.  I have to do my share.  I have to help my patients as well my co nurses’ patients but walking around the unit wears me out.  I started coughing hard until secretions come out from mouth and nose.  I would hide in a vacant room so my peers and patients would not hear me.  I’m working because my insurance pays for Ofev. I wish I could share in this forum that Ofev helps my dyspnea but it doesn’t.  My O2 saturation drops to 84%-87% but rises up once I rest.  I bought a scooter so I will save my energy from parking lot to the nursing unit and back to my car at the end of shift. This is a death sentence for me.  I hate this disease.

  • Hello, Charlene, this topic is so close to my heart.  I’m a cardiac nurse. I am a nurse for 28 years.  Prior to that I was a pharmaceutical sales rep from Manila and here in the USA. I decided to shift to nursing because it was a wonderful career that I can perform until retirement.  In 2018, I was diagnosed with ILD.  Only last year, after a lung biopsy my life fell apart.  The lung biopsy enabled my health care providers to diagnose what type it was.  It was chronic hypersensitivity pneumonitis.  However, the lung biopsy caused a severe left lower lobe flare up.  I was never the same.  I was always short of breath. I was off work for 6 months last year.  I went back to work last August and forced myself to work because of financial reasons.  This year, my pulmonologist prescribed Ofev which I found out costs a lot ($11,000 per month). Luckily, my insurance paid for it and also was subsidized by the manufacturer.  Luckily no diarrhea experienced from Ofev which was my biggest fear.  I’m struggling with shortness of breath, cough, allergic rhinitis, GERD, and wheezing everyday which was relieved by nebulizers, antihistamine, and cough suppressants.   I was in a way begging to stay at work until 65 for Medicare.  It was a hell of an ordeal.  My mind is strong but my body is falling apart.  I enjoy being a night shift nurse.  I have great co nurses and assistants.  They are ver compassionate.  I am not afraid to die. I just want it sooner so my agony will end.  Retirement is scary. I am not ready for it.  I always tell myself that there are worst people than me and some of them are my patients. Prayers keeps me hopeful and trustful of the unforeseen.  So help me, God. 

     

     

  • virginia-currie

    Member
    January 13, 2022 at 2:17 am in reply to: OFEV purchase

    I was prescribed ofev but my insurance denied it. I am Trying the assistance program.  If they require a copay, I don’t think I can afford it.  I was referred to Humana.  I have a chronic fibrotic hypersensitivity pneumonitis and went more short of breath after this disease was found in a lung biopsy.  I’m still working for the medical insurance.  So help me God! I don’t like the lung transplant.

  • virginia-currie

    Member
    January 13, 2022 at 2:15 am in reply to: OFEV purchase

    I was prescribed ofev but my insurance denied it. I. Trying the assistance program.  If they require a copay, I don’t think I can afford it.  I was referred to Humana.  I have a chronic fibrotic hypersensitivity pneumonitis and went more short of breath after this disease was found in a lung biopsy.  I’m still working for the medical insurance.  So help me God! I don’t like the lung transplant.

  • virginia-currie

    Member
    April 8, 2021 at 10:16 pm in reply to: Guilt as a Young Adult with Ailing Parents

    @christie-patient

    My mother had partial lobectomy.  She and my father 6 packs a day smoker.  She passed away just at 60 yo. I have so much guilt not able to understand her medical condition.  At times, I felt really frustrated having to take care of her.  I was so stressed because my father had lung cancer and died at age 65 yo just 3 months before my mother died.
    I was married and divorced and not blessed with children as well.  I’m now diagnosed with PF.  At times, blaming myself for not being a good daughter to my mother.  You see, those thoughts will enter our minds and put us down.  I’m so glad that you still have your mother.  Show her how much you love her.  Do not put a lot of pressure on yourself. There is a reason why things happen.  If you are spiritual, belief in God will ease any guilt or doubts of your past and will make you deal with the present time.  I’m fighting my fear about this illness and sadness that I may not be able to go back to work.  I have to move on.  Love your husband and speak with him regarding having children.  Is it a priority?  Your marriage to him is important that you have to preserve.  Show your mother the gratitude she did in raising yo up.  Seek for peace through prayers, patience, and perseverance.  You will be okay.

  • virginia-currie

    Member
    March 31, 2021 at 12:12 am in reply to: Increased Throat Clearing

    I was diagnosed with hypersensitivity pneumonitis and after the lung biopsy, my mucus production increased, wheezing started, post nasal drip, shortness of breath and desaturation.   I was started with oxygen after lung biopsy.  Prior to that my occasional coughing was controlled by Neurontin or Gabapentin.  I’m so miserable because with increased ambulation or talking will exacerbate these conditions.  I use albuterol nebulizer, pulmocort nebulizer, Flonase nasal spray, saline nasal rinses, and I just added Azelastine nasal spray which is an antihistamine. I use Hycodan once or twice a day.  I use also Ativan 1 mg PO at night.  Sleep is uninterrupted by cough but during the day, I have more frequent episodes.  I’m on medical leave. My baseline was functional without the use of oxygen and medications like prednisone and Cellcept prior to a lung biopsy to determine if it is IPF vs Hypersensitivity Pneumonitis. My recovery is lengthy.  I wish I can go back to work as a bedside RN.  My doctor wanted me to leave the bedside.  I’m miserable.

  • I am on disability now after a lung biopsy last January to know whether it was PF vs Hypersensitivity Pneumonitis.  The biopsy result was Hypersensitivity Pneumonitis.  I had a worst post op agony after my surgical biopsy.  I have to use oxygen 24/7 ( I never did before). Coughing and desaturation are futile.  I felt I would die.  I lost weight.  2 years ago I had chronic cough and was diagnosed with interstitial lung disease.  It was not autoimmune.  My symptoms were basically like allergy symptoms, chronic cough, post nasal drip, hoarse voice, GERD.  My cough was controlled with Gabapentin.   I was able to go back to work as an RN around April 2019 until before my surgery January, 2021.  I’m now taking prednisone and cellcept.  I still use gabapentin hoping it would help me but I don’t know. I’m still coughing and most of the time whitish productive secretions.  I’m short of breath when walking around my house even with oxygen.  I wish the gabapentin will help my cough med Hycodan and at times take Ativan 1 mg PO to calm my cough.  The tessalin pearls were not helpful.  I noticed that I had more post nasal drips.  Who among you has my disease? I have a chronic Hypersensitivity Pneumonitis that is acquired from birds, wood work, molds.  I was exposed to molds in my old homes. We had a lot of pigeons in my neighborhood.  I sprayed their poops with water when I’m cleaning the outside part of my house.  This exposure is way back I moved in my neighborhood but got exacerbated after a flu and pneumonia.  After that, my life was never the same.  I lost 48 lbs since 2019.

  • virginia-currie

    Member
    December 1, 2020 at 4:57 pm in reply to: No, I don’t have COVID-19. It’s my PF cough.

    Before the pandemic, I was chastised by Catholic churchgoers when I cough even I wear a mask.  My pulmonologist at a hospital where I work as an RN recommended Neurontin.  This medication really help my coughing up to this moment.  I’m so happy with lesser coughing.  Ask your doctor about Neurontin, this medication will really help you.

  • virginia-currie

    Member
    August 1, 2020 at 3:39 am in reply to: Diagnosis Questions

    The last time I spoke with my pulmonologist via zoom, we are trying to rule out IPF vs Hypersensitivity Pneumonitis.  On top of being diagnosed with interstitial lung disease , I suffer from allergies, asthma, GERD, and post nasal drip.  The symptoms of IPF are all present with the symptoms I have.  I’m so depressed with this condition because my work wants me to take care of Covid patients.  I am an RN.  I informed the Human Resources that I already have the lung disease and they recommend that I take a leave of absence.  We still have a lot of non Covid patients that I have no problem taking care.  The pressure is so intense that anxiety makes me cough furthermore.  I’m taking Neurontin for cough, Allegra, Nexium or Baclofen for GERD at night. I do nasal rinse, Flonase, Azelastine, and Qvar.  I have to be on top of this meds otherwise, I will have an enormous coughing spell and shortness of breath.  I feel something on my throat ( like a ball of phlegm) that I need to cough out.  If I lose my work, I will not be able to afford the treatments for this disease.  I’m so depressed.

  • virginia-currie

    Member
    March 10, 2020 at 2:55 pm in reply to: Metformin (?) Status Update

    If Metformin can reverse the progression of ILD, then it is good need for me.  I wish you can  update about the latest studies on this.  This is a good news for a diabetic like me and  afflicted with ILD.

  • virginia-currie

    Member
    February 27, 2020 at 10:58 am in reply to: fits of cough

    Gabapentin works for me.  I’m able to be functional at work and at home.  I take 3 cap 300 mg TID.  Before then, I cough excessively at work and has difficulty sleeping at night.

  • virginia-currie

    Member
    January 14, 2020 at 4:55 pm in reply to: Gabapentin is a Proven Treatment for Refractory Chronic Cough

    gabapentin works for me.  I have been coughing for more than a year until my pulmonologist told me that I can take Neurontin or Gabapentin.  My life improved.  Constant coughing stressed me out.  I take 300 mg three times a day.  I have a decent sleep.  Neurontin helps with sleep.  One side effect is sleepiness.  I took it before during the night time.  I found out with the 300 mg TID doesn’t make me sleepy during the day.  I still work as a registered nurse.  I was just newly diagnosed for PF.  Hope this comment helps.

  • virginia-currie

    Member
    June 30, 2022 at 5:10 pm in reply to: Sleeping with head elevated

    Same with me too. I find comfort with atleast 2 pillows at my back or lying on my left side with one pillow by my left neck.  Sleep is ok. I have to cough out secretions only throat and chest.  Then runny nose starts oozing out. When these secretions are out my breathing is better.  I have CHP as well.  Miserable with it.  I’m still working though but may slow down next year.

  • virginia-currie

    Member
    June 24, 2021 at 4:19 pm in reply to: Shortness of breath and normal oxygen reading

    Check with amazon.  They may have it.