What is Pulmonary Fibrosis
Diffuse parenchymal lung disease (DPLD), also known as interstitial lung disease, refers to a group of lung diseases, affecting the alveolar epithelium, pulmonary capillary endothe...
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Losing loved one to this disease
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My father was diagnosed w/severe ideopathic pulmonary fibrosis earlier this year. He was going through all the steps necessary in order to be eligible for a double lung transplant. The doctors said that was his only option, he had to endure a lot in the past few months, psych test, heart was checked, his arteries, his teeth had to be pulled (which was a VERY HARD thing for him to deal with), and numerous other test and procedures. His final step before being eligible was a open lung biopsy, which he had on Nov 14th, 2008, he walked into the hospital not needing oxygen, he would get very winded and tired with anything he did but he had not been put on oxygen yet. About 7 days after the biopsy he was sent home, w/oxygen 24/7, a wheel chair, a walker and a home health nurse and physical therapy sessions. He only got up out of the bed twice once he got home, he was not the same, he was worse, everything hurt him, any movement made his oxygen levels drop it was the first time I ever saw my dad so "sickly" and it terrified me. I visited him on Nov 25th and talked w/him as much as he could and he got up and walked w/out his walker or any assistance, I asked him how he was really feeling and he said that that day was the first time since going in for his biopsy that he thought he would survive this and that he felt GOOD! I told him that was good to hear, gave him a kiss and hug and told him I would see him later. Tragically that was the last time I saw my dad alive, he died from his illness early in the morning of Thanksgiving, Nov 27, 2008. Every day since then has been a struggle for me and my family, I miss him so much and I just want someone to talk to that understands all that I had to watch my dad go through fighting this illness and someone who understands how great this loss was to me, I have always been a daddy's girl, I am the only girl and the baby in our family and I am just LOST, DEPRESSED, BROKEN HEARTED without my dad. I also lost my grandmother, on my dads side, to this same disease about 2 years ago and still grieving her loss....please help, any advice, stories, support is appreciated.
Posted on 12/28/08, 10:12 pm |
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You have my most sincere condolences. I have IPF, I was DX last May when I had a open lung biopsy. I was scared as I read about so many that passed away so soon after their biopsy. I have another appointment with my pulmonary Dr later this month. I see him every 2-3 months. I've been on oxygen since May. I do use a walker but, that's for Neuropathy. I tend to fall down if I don't use it. I also have a wheelchair as some years ago I was having a very difficult time walking. Tom 
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I am so sorry that you lost your father to this disease. I am a 28 year old female who is going through this disease. The doctors say that I am in the end stages of my disease and that I need a double lung transplant. I had my open lung biopsy in may of 2008. It was the most painful thing that I have ever been through, but without it there would be no hope for me today. I too got worse after my biopsy. Everything hurt I couldn't breath I am on oxygen, I had to use a wheelchair and or walker to get around. I just wanted to give up. My husband and my mother have been amazing support. But I know that it is hard on them too. I recently started a pulmonary rehab class and I no longer use a wheelchair or walker.My goal is to get my transplant,and help other people and their families who are going through the same thing as I. My thoughts and prayers are with you and your family and I am here if you need to talk. Summer
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cavant78, I am so sorry about the loss of your Dad. I KNOW that you miss him very much. I'm so sorry that you have lost two loved ones to this disease. My best advice to you, from the practical side, is to go now and get a baseline xray or catscan of your own lungs, and every 2-5 years have your own lungs checked. My husband's mother had it and now he has it. I gave my daughter the same advice. Take good care of your own health. Blessings to you.
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cavant78: Sooo sorry about your Dad but I know exactly what your feeling. Lost my husband after oly 7 months after diagnosis. He couldn't move w/o his oxygen level going so low...we didn't even get to the lung transplant interview. This is a horrible disease but the govt needs to spend money on this....Again, I know what your feeling .Mary
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