Progression of Interstitial Fibrosis

[Shuska]

My husband was diagnozed with Interstitial Fibrosis in both lungs on 1/21/03.  He was listed with the lung transplant on 3/15/03. He has had his ups and downs with this disease, but now the doctors said his disease has progressed. He was taken off the lung transplant list because of complications with his heart. He is currently on 8ltrs. of oxygen at rest, and when he stands he needs 15ltrs. to do the task. After spending 17 days in the hospital for his condition, he was released on 4/14/06. At that time the doctor said to me that my husband is dying, could be tonite or maybe a year from now. I was shocked, I'm taking care of him at home, the doctors used all options, but I would like to know what to expect next. Im so tense watching him gasp for air and I hate watching him suffer.  He is taking Valium a couple times a day and Lexapro. I just want to know if anyone has had a similiar situation.  Any advice would be greatly appreciated.

[National Jewish]

This must be terribly difficult for you and your husband.  Whatever you do, you must not endure this alone. Your husband must be treated to get relief of his shortness of breath.  There are two groups of physicians with this expertise. They are oncologists (cancer specialists) who treat lung cancer victims suffering from bad shortness of breath and some pulmonary disease specialists.  First consult with his current physicians about this.  Judiciously used morphine therapy can be a godsend for this condition.



Please consider Hospice Care for your husband.  Many Hospice specialists also have the knowledge and experience necessary to provide relief and the willingness to do what is necessary.



We have attached an abstract on current management of severe shortness of breath, in lung cancer.  The principles of achieving relief are the same, whatever the lung disease.  You may want to show this to his physicians.



Good luck,

Authors Jantarakupt P
Authors Full Name Jantarakupt, Peeranuch. Porock, Davina.

Institution McCormick Faculty of Nursing, Chiang Mai, Thailand. peeranuch_j***@****

Title Dyspnea management in lung cancer: applying the evidence from chronic obstructive pulmonary disease. [Review] [78 refs]

Source Oncology Nursing Forum. Online. 32(4):785-97, 2005 Jul.

Abstract PURPOSE/OBJECTIVES: To provide an overview of mechanisms of dyspnea and causes of dyspnea in chronic obstructive pulmonary disease (COPD) and lung cancer and to critically review current pharmacologic and nonpharmacologic management of dyspnea for COPD and lung cancer. DATA SOURCES: Published articles, abstracts, textbooks, and the authors' personal experiences with dyspnea management in COPD and lung cancer. DATA SYNTHESIS: The causes of dyspnea in cancer are more varied than the causes of dyspnea in COPD; however, many are similar, thus providing the justification for recommending best practice from COPD research to be used in lung cancer. Dyspnea in both diseases is treated by corticosteroids, bronchodilators, antianxiety drugs, local anesthetics, and oxygen. However, when dyspnea is severe, morphine is the first choice. Using specific breathing techniques, positioning, energy conservation, exercise, and some dietary modifications and nutrient supplements can help with dyspnea management. CONCLUSIONS: Pharmacologic and nonpharmacologic management of dyspnea in COPD can be applied to dyspnea related to lung cancer. Further research in the management of dyspnea in lung cancer is required, particularly controlled studies with larger sample sizes, to determine the effectiveness of the application of COPD dyspnea management in lung cancer. IMPLICATIONS FOR NURSING: Previous studies provide a guideline for applying dyspnea management for COPD to cancer. The theoretical frameworks used in previous studies can be modified for conducting further study. [References: 78]

Publication Type Journal Article. Review.

[Lori_B]

I hope it is okay to post an address for another web site here.  If you go to http://www.huff-n-puff.net/newforum/ and go to the "Sensitive Subjects" section you will find other people in the same situation that you are in.  Browsing through the old posts should help you learn what to expect next.



I'm sorry you are going through this. I know you said he was turned down for transplant, but have you explored the possibility of getting a transplant at another facility?  They all have different guidelines they follow.  Depending on how severe his heart problems are, perhaps he would have a chance going somewhere else.



I wish you the best - Lori

[Shuska]

Thanks Lori, I went to the site, but Im hopeful that someone will be able to help. I really appreciate your reply because I'm at my wits end. Besides taking care of my husband, I also have my elderly parents living with us. My mom is 87 and has dementia and dad is 88, but fairly healthy. He is my rock, he keeps me strong to handle whats going on. Thanks so much.