Forum Replies Created

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  • Thank you Ted.

  • mark-koziol

    Member
    February 25, 2021 at 6:22 pm in reply to: POSSIBLE MISDIAGNOSIS

    Hi Jenny, I received a single lung transplant. They don’t give anti fibrotic after transplant. People do switch from one medicine to another. It is the patients choice. Take care, mark

  • mark-koziol

    Member
    February 22, 2021 at 1:35 pm in reply to: POSSIBLE MISDIAGNOSIS

    Hi Marj, I have not experienced what your husband has been through. I do know he needs to be seen by a pulmonologist and possibly a gastroenterologist. Patients are still being seen in the office. The excuse by medical professionals of Covid being the cause of why a person can not be seen by a physician does not fly with me. Not every medical professional is working with Covid patients. Please demand an appointment with both specialists and also your primary care provider. Hopefully a proper diagnosis will come from the appointments and treatment can begin. Please keep us updated on your husbands condition and if you have any questions, please ask. Take care, Mark.

  • mark-koziol

    Member
    February 22, 2021 at 7:32 am in reply to: Exacerbations

    Hello Jill, I can tell you first hand that you can have exacerbation and be on an anti fibrotic medicine. I was on Ofev and suffered an exacerbation and was hospitalized. My treatment was more supplemental oxygen as I went from 4 liters of pulse o2 to 6-8 liters of continuous flow. As you can see it was a drastic change and set my lung transplant evaluation into motion. My exacerbation was caused by the RSV I contracted. Here is a link from the pulmonary fibrosis foundation and info on exacerbations is on page 28. Take care, Mark.     https://www.pulmonaryfibrosis.org/docs/default-source/patient-information-guides/2017-pff-patient-information-guide.pdf?sfvrsn=39cd958d_0

  • mark-koziol

    Member
    February 21, 2021 at 11:40 am in reply to: What’s your oxygen set up?

    Hello Vishal, you have made a great post. Thank you for sharing. Have a great Sunday, Mark.

  • mark-koziol

    Member
    February 20, 2021 at 9:02 am in reply to: What should I expect as IPF progresses?

    Hello Vishal, I’m sorry any of our members have to watch a loved one deteriorate. My brother recently passed. I was able to see him before he did pass. When I saw him, he was on 15 liters of 02. For most of the day he was comfortable but he told me at night is when he began to get fatigued. He would nap on and off throughout the day. At this time he his oxygen saturation hovered around 82%. Although, the sats were below 88% he was not in distress. It seemed his body acclimated to his needs. My brother died approximately 7 weeks later. His passing was peaceful during his sleep. He was on hospice for the last 3 weeks of his life and only medication was a drop of morphine under his tongue for him to feel comfortable. I wasn’t with after I left him but we did video with each other quite often and texted or talked every day. I could tell after too much talking he would get a little tired. This is a sad event to watch and be part of. I thank you for being there for your father. Not every patient is this fortunate. Take care, Mark

  • mark-koziol

    Member
    February 19, 2021 at 7:42 am in reply to: Second opinion referral suggestions?

    Hello James, there are many spouses and caregivers on our forum. Please have your wife complete the request to become a member. Our member caregivers are well informed and compassionate. I’m sure they would love to lend an ear or share their experiences with your spouse. I’m sorry I do not have any experience with the two centers you have mentioned. Hopefully another member has. Have a great breathing day! Mark

  • mark-koziol

    Member
    February 24, 2021 at 8:14 pm in reply to: Sudden deterioration in breathing

    Hi Julie, I’m glad you were persistent in obtaining the home concentrator. I’m glad to hear your husband is doing better. We all desire proper medical care and thankfully caregivers like yourself step in and have to demand these services. Have great night, Mark.

  • mark-koziol

    Member
    February 24, 2021 at 7:57 pm in reply to: POSSIBLE MISDIAGNOSIS

    Hello Bill, first of all thank you for sharing. I think it’s great how physically active you are. Your positivity will enhance your prognosis. Your contributions will always be welcome. Have a great rest of the night, Mark

  • mark-koziol

    Member
    February 24, 2021 at 7:50 pm in reply to: Life span

    Hi Steven, much of the literature still contains the estimated 3-5 years expected life span. I don’t know why they wouldn’t move to using a medium rather than an average for measurement. I do think many hospitals and institutions are trepid in their estimations until a large respected institution changes their numbers. I think a valid and reliable research study would facilitate this change as well. Thank you Steven for your input, Mark.

  • mark-koziol

    Member
    February 24, 2021 at 7:43 pm in reply to: Life span

    Hello John, you have a wonderful positive outlook. Taking your medicine on time helps with the efficacy of the medication. You are right about the gastric effects. Some people do everything right, eat healthy and eat the small meals and have disheartening gastric effects. Others can eat pizza and wings and the medicine doesn’t have a negative effect on your digestive system. Take care, Mark

  • mark-koziol

    Member
    February 24, 2021 at 7:35 pm in reply to: Life span

    Hello Carlo, in order to get the information you desire I suggest you participate in phase 2 pulmonary rehabilitation. They will be able to gauge your performance and they will provide you with the METS required and desired. Here is a link explaining this process. https://www.health.harvard.edu/staying-healthy/met-hour-equivalents-of-various-physical-activities

  • mark-koziol

    Member
    February 24, 2021 at 7:27 pm in reply to: Life span

    Hello Rheal, thank you for sharing your story. Please take care, mark.

  • mark-koziol

    Member
    February 24, 2021 at 5:36 pm in reply to: What should I expect as IPF progresses?

    Thank you JT.

  • mark-koziol

    Member
    February 23, 2021 at 3:42 pm in reply to: POSSIBLE MISDIAGNOSIS

    Hello Carlo, you make me laugh. Thank you for kind comment. The key master tab signifies I am one of your co-moderators for the forum. Charlene Marshall is your other moderator. I’m hoping another member can answer your question on Esbriet. I have no experience with this medicine and don’t think I can comment satisfactory. I was on Ofev. I would suggest speaking with your pulmonologist or calling the esbriet customer service department. I hope you feel better soon. The symptoms you described are miserable to have. Take care, Mark

  • mark-koziol

    Member
    February 23, 2021 at 3:30 pm in reply to: Exacerbations

    Hi Jill, I had a home concentrator that went to 10 lpm and I used the E series tanks when I was out of the house. A friend built an insulated tank holding container that I placed in the back of my pickup. Every cpl days I would get 22-26 tanks. I was still working so I used the E tanks while I was work and any time out of the house. The custodians at my school would store them in their work area along with my electric scooter. I was fortunate to have wonderful colleagues and friends who would monitor me throughout the day, maybe too much but it was very much appreciated. I hope I answered your question. Mark

  • mark-koziol

    Member
    February 22, 2021 at 5:13 pm in reply to: POSSIBLE MISDIAGNOSIS

    Hi Marj, I looked up a research study on the effect of digital clubbing on oxygen saturation. The study used cystic fibrosis patients. There is an affect, however your reading can underestimate the reading. My heart rate used to jump almost 50 points when I stood up from a seating position. I’m not sure about the blood pressure. Another question for your appointment. Good luck on your visit, may things go your way. Take care, Mark.

  • mark-koziol

    Member
    February 22, 2021 at 1:40 pm in reply to: Patient Experiences with COVID-19

    Hello Kathleen, you have been through quite an experience. I’m happy you survived the ordeal. I can’t imagine what you had to endure. You are a strong woman to have beat this disease. May you never have to go through anything like this again. Have a great breathing day Kathleen, Mark.

  • mark-koziol

    Member
    February 21, 2021 at 6:00 pm in reply to: Comparing Lung Transplant Centers

    Hello Bobbie, I don’t know where in WV you reside but you are in driving distance from two highly regarded lung transplant centers; UPMC in Pittsburgh and the Cleveland Clinic where I had my transplant. Please ask fir the referral because you have a window to get the transplant, and you want to be relatively healthy when going through the evaluation process. Please review my original post on this topic. Have a great rest of the day and I hope you feel better soon. Mark

  • mark-koziol

    Member
    February 21, 2021 at 11:37 am in reply to: Life span

    Hi Manzurul, you have a great outlook. You are doing everything right including getting a second opinion. Have a great Sunday, Mark

  • mark-koziol

    Member
    February 20, 2021 at 4:56 pm in reply to: Shortness of breath and supplemental O2

    Hi Kathleen, I’m sure you have read the thread. There could be several reasons why this is happening to you. Please speak with your physician and voice your concerns. There may be inflammation that is causing your problem, and in many cases this can be fixed. Have a great Saturday, Mark.

  • mark-koziol

    Member
    February 19, 2021 at 7:33 am in reply to: Sudden deterioration in breathing

    Hello Vishal, I’m happy your father is now receiving the appropriate amount of oxygen. It makes a great difference on how his day will go and the energy he will have throughout the day. I hope the respiratory therapist can offer some suggestions. Have a great weekend, Mark.

  • mark-koziol

    Member
    February 17, 2021 at 1:52 pm in reply to: Life span

    Hello Mark B., what s great story. May you continue to persevere. So happy to you are doing well. Thank you for sharing. Mark

  • mark-koziol

    Member
    February 17, 2021 at 8:22 am in reply to: Life span

    Hello Denny, you make a great point. It’s also pleasing to hear when a member has remained stable for such a long period of time. Breathe well today my friend! Mark

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