Guest guest Posted November 17, 2003 Report Share Posted November 17, 2003 Mindy - That sucks. Are they readjusting your meds? Sometimes you just need something powerful to knock it out - as I am sure you know. Last year my daughter was out for 5 weeks. She was so upset. This year when she started going bad - we treated her more agressively. Maybe your husband should talk to someone either couseling or a Nurse at the Center. If he is calmer I am sure it would help you. School may take you longer but you'll do it. If you can't get pregnant you can adopt....or try other ways to get pregnant - there are many today! I am sure you feel crappy and it doesn't make things look positive. Hang in there!!!!!!!! Rosemary in NY with 3 children (13, 11 and 7) with CF. I have a dog named TOBI and have coined the phrase " BREATHE DAMMIT " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2003 Report Share Posted November 18, 2003 I am sorry about the decline in your lungs.As a Mom of an almost 20 year old with cf he hasn't been doing his meds either( he expects the hospital to be a miracle worker )and fix what he neglected.I know dealing with a disease is tough.I am a cervical cancer survivor and I live with arthritis daily.I hope you decide to take control of cf and kick it's butt.All my best to You and Yours.BeckyB.--Mama to 8-2w/cf--Nana to 2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2003 Report Share Posted November 18, 2003 Mindy, That is quite a bit to take on when you hear your lung functions have dropped that much. What meds are you on? Zithromycin? What nebulizers are you doing? Do you do Chest Physiotherapy? Do you exercise regularily? Be sure you are getting the best and the latest success treatments for CF. 17% lung function is very low... has your doctor prescribed O2? I am assuming you are young, since you mentioned your life goals that you have for the future. Your future is all ahead of you, and keep planning. Things sometimes do get bumpy with CF, but it can be just temporary. Being devoted to CF is something we all eventually learn to do. Tiring, boring at times, but we know it the long run it is the best thing. I am 40, sister is 49. We both have CF. She also has 4 kids, with no CF. We both also had lung transplants in the past years and doing great. Good luck Joanne Schum luckylungsforjo@... > hi everyone, > > i went and had my pulminary function test done today. i'm devestated > by the results. my last test i had a 47 % function it has droped to > 17% within just a few months. they are threatning to put me in the > hospital if it dosen't improve within 2 weeks. i haven't done my > medicine like i'm suppose to. i'm gonna start doing them but i don't > know if it could improve my test in such a short period of time. i'm > just having a really hard time right now. people have suggested i go > to counseling to deal with it and should do counseling with my > husband also. he has never been around a sick person and i've never > been really sick around him. we just got married in june and every 5 > minutes he thinks i'm going to die. i have alot going on right now > and just need to vent i guess. see i was a sick child but never to > the extreme of constantly being sick it went about every other year > i would get really sick. well now it seems like every six months i > am getting sick and don't know what to do about it. i know they say > a positive attitude helps keep you healthy but how can you have one > when something bad has happened to you in the last three years. i > just feel like everything i've ever wanted out of life i will never > be able to do. like be a teacher, or have a child, or go through a > pregnancy. i would love to do those things but it will never happen. > i might be able to adopt but that could be years away yet. > thank you for listening > mindy > > Joanne M. Schum Cystic Fibrosis Bi-lateral Lung Transplant Recipient September 12, 1997 University of North Carolina Hospitals Chapel Hill Residence: Upstate New York email: luckylungsforjo@... Manager of: Transplant Support - Lung, Heart/Lung, Heart http://groups.msn.com/TransplantSupportLungHeartLungHeart " Taking Flight - Inspirational Stories of Lung Transplantation " Compiled by Joanne Schum Authored by lung recipients around the world http://www.trafford.com/robots/02-0497.html http://www.trafford.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2003 Report Share Posted November 18, 2003 Mindy, Does the clinic ever repeat the test to see that it was accurate? That is a pretty big drop in such a short time. I hope that it comes right back up. Please take good care of yourself. Gale > > > hi everyone, > > i went and had my pulminary function test done today. i'm devestated > by the results. my last test i had a 47 % function it has droped to > 17% within just a few months. they are threatning to put me in the > hospital if it dosen't improve within 2 weeks. i haven't done my > medicine like i'm suppose to. i'm gonna start doing them but i don't > know if it could improve my test in such a short period of time. i'm > just having a really hard time right now. people have suggested i go > to counseling to deal with it and should do counseling with my > husband also. he has never been around a sick person and i've never > been really sick around him. we just got married in june and every 5 > minutes he thinks i'm going to die. i have alot going on right now > and just need to vent i guess. see i was a sick child but never to > the extreme of constantly being sick it went about every other year > i would get really sick. well now it seems like every six months i > am getting sick and don't know what to do about it. i know they say > a positive attitude helps keep you healthy but how can you have one > when something bad has happened to you in the last three years. i > just feel like everything i've ever wanted out of life i will never > be able to do. like be a teacher, or have a child, or go through a > pregnancy. i would love to do those things but it will never happen. > i might be able to adopt but that could be years away yet. > thank you for listening > mindy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2003 Report Share Posted November 18, 2003 Mindy, I am sorry to hear that your numbers have dropped so much. I hope that you can get aggressive with your treatments and bring them back up. You might not be able to get them back to where they were in 2 weks time but maybe if the docs see a significant improvement within that time, they will give you a bit more time to bring them back up? If you really want to have children (adopted or not)you have got to get those numbers up and keep them up! Maybe that can serve as some motivation for you? I will keep you and your numbers in my prayers. mom of 5 with CF > > > hi everyone, > > i went and had my pulminary function test done today. i'm devestated > by the results. my last test i had a 47 % function it has droped to > 17% within just a few months. they are threatning to put me in the > hospital if it dosen't improve within 2 weeks. i haven't done my > medicine like i'm suppose to. i'm gonna start doing them but i don't > know if it could improve my test in such a short period of time. i'm > just having a really hard time right now. people have suggested i go > to counseling to deal with it and should do counseling with my > husband also. he has never been around a sick person and i've never > been really sick around him. we just got married in june and every 5 > minutes he thinks i'm going to die. i have alot going on right now > and just need to vent i guess. see i was a sick child but never to > the extreme of constantly being sick it went about every other year > i would get really sick. well now it seems like every six months i > am getting sick and don't know what to do about it. i know they say > a positive attitude helps keep you healthy but how can you have one > when something bad has happened to you in the last three years. i > just feel like everything i've ever wanted out of life i will never > be able to do. like be a teacher, or have a child, or go through a > pregnancy. i would love to do those things but it will never happen. > i might be able to adopt but that could be years away yet. > thank you for listening > mindy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2003 Report Share Posted November 18, 2003 Mindy, you've made the first step in the right direction by admitting that you haven't been doing your needed treatments. Now make another step and try to focus on what you have to live for instead of what might not ever happen for you. You have a husband who obviously loves you, that in itself is worth living for. You may not be able to bring your pft's up in that short time with conventional meds. Perhaps it is time to explore the alternatives. Even with them you may not avoid a hospital stay, but they could increase your health enough to help keep you healthier in the future. Before you ask what right I have to speak to you in this way even though I'm don't have cf myself, let me tell you that as a mother of a child with cf, I would hope that some one would speak so to my daughter if/when the need arises. Get up girl, do what you have to do, and get on with the business of living. :-) with much motherly love, Dawn mom of 4, 7 and under, the youngest wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2003 Report Share Posted November 18, 2003 Mindy, Your number 1 priority right now should be " Mindy " . What good are all the things you want to do if you are not here to enjoy them. Also, you have someone else to think about also, your husband and future children. Being newly married is a stressor in itself. Slow down, take care of yourself, and things will get better. It probably won't drastically improve your pft in two weeks to start doing your medicine now but it will put you on the right path. We want you to take care of yourself so that we can have a baby shower for you too! It all will be ok! Tina W., mother of Steph, 18yo wcf devestated hi everyone, i went and had my pulminary function test done today. i'm devestated by the results. my last test i had a 47 % function it has droped to 17% within just a few months. they are threatning to put me in the hospital if it dosen't improve within 2 weeks. i haven't done my medicine like i'm suppose to. i'm gonna start doing them but i don't know if it could improve my test in such a short period of time. i'm just having a really hard time right now. people have suggested i go to counseling to deal with it and should do counseling with my husband also. he has never been around a sick person and i've never been really sick around him. we just got married in june and every 5 minutes he thinks i'm going to die. i have alot going on right now and just need to vent i guess. see i was a sick child but never to the extreme of constantly being sick it went about every other year i would get really sick. well now it seems like every six months i am getting sick and don't know what to do about it. i know they say a positive attitude helps keep you healthy but how can you have one when something bad has happened to you in the last three years. i just feel like everything i've ever wanted out of life i will never be able to do. like be a teacher, or have a child, or go through a pregnancy. i would love to do those things but it will never happen. i might be able to adopt but that could be years away yet. thank you for listening mindy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2003 Report Share Posted November 18, 2003 Joanne, welcome to this list; no tyrants here! Great list! Welcome aboard! n Rojas Re: devestated > Mindy, > > That is quite a bit to take on when you hear your lung functions have dropped > that much. > > What meds are you on? Zithromycin? > What nebulizers are you doing? > Do you do Chest Physiotherapy? > Do you exercise regularily? > > Be sure you are getting the best and the latest success treatments for CF. > > 17% lung function is very low... has your doctor prescribed O2? > I am assuming you are young, since you mentioned your life goals that you > have for the future. Your future is all ahead of you, and keep planning. Things > sometimes do get bumpy with CF, but it can be just temporary. Being devoted > to CF is something we all eventually learn to do. Tiring, boring at times, but > we know it the long run it is the best thing. > > I am 40, sister is 49. We both have CF. She also has 4 kids, with no CF. We > both also had lung transplants in the past years and doing great. > > Good luck > Joanne Schum > luckylungsforjo@... > > > hi everyone, > > > > i went and had my pulminary function test done today. i'm devestated > > by the results. my last test i had a 47 % function it has droped to > > 17% within just a few months. they are threatning to put me in the > > hospital if it dosen't improve within 2 weeks. i haven't done my > > medicine like i'm suppose to. i'm gonna start doing them but i don't > > know if it could improve my test in such a short period of time. i'm > > just having a really hard time right now. people have suggested i go > > to counseling to deal with it and should do counseling with my > > husband also. he has never been around a sick person and i've never > > been really sick around him. we just got married in june and every 5 > > minutes he thinks i'm going to die. i have alot going on right now > > and just need to vent i guess. see i was a sick child but never to > > the extreme of constantly being sick it went about every other year > > i would get really sick. well now it seems like every six months i > > am getting sick and don't know what to do about it. i know they say > > a positive attitude helps keep you healthy but how can you have one > > when something bad has happened to you in the last three years. i > > just feel like everything i've ever wanted out of life i will never > > be able to do. like be a teacher, or have a child, or go through a > > pregnancy. i would love to do those things but it will never happen. > > i might be able to adopt but that could be years away yet. > > thank you for listening > > mindy > > > > > > > > > Joanne M. Schum > > Cystic Fibrosis > Bi-lateral Lung Transplant Recipient > September 12, 1997 > University of North Carolina Hospitals Chapel Hill > Residence: Upstate New York > email: luckylungsforjo@... > Manager of: Transplant Support - Lung, Heart/Lung, Heart > http://groups.msn.com/TransplantSupportLungHeartLungHeart > > " Taking Flight - Inspirational Stories of Lung Transplantation " > Compiled by Joanne Schum > Authored by lung recipients around the world > http://www.trafford.com/robots/02-0497.html > http://www.trafford.com/ > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2003 Report Share Posted November 18, 2003 Your post gave me goose bumps. I am so glad that you wrote it and that you are on this list. Gale > Mindy, > > That is quite a bit to take on when you hear your lung functions have dropped > that much. > > What meds are you on? Zithromycin? > What nebulizers are you doing? > Do you do Chest Physiotherapy? > Do you exercise regularily? > > Be sure you are getting the best and the latest success treatments for CF. > > 17% lung function is very low... has your doctor prescribed O2? > I am assuming you are young, since you mentioned your life goals that you > have for the future. Your future is all ahead of you, and keep planning. Things > sometimes do get bumpy with CF, but it can be just temporary. Being devoted > to CF is something we all eventually learn to do. Tiring, boring at times, but > we know it the long run it is the best thing. > > I am 40, sister is 49. We both have CF. She also has 4 kids, with no CF. We > both also had lung transplants in the past years and doing great. > > Good luck > Joanne Schum > luckylungsforjo@a... > > > hi everyone, > > > > i went and had my pulminary function test done today. i'm devestated > > by the results. my last test i had a 47 % function it has droped to > > 17% within just a few months. they are threatning to put me in the > > hospital if it dosen't improve within 2 weeks. i haven't done my > > medicine like i'm suppose to. i'm gonna start doing them but i don't > > know if it could improve my test in such a short period of time. i'm > > just having a really hard time right now. people have suggested i go > > to counseling to deal with it and should do counseling with my > > husband also. he has never been around a sick person and i've never > > been really sick around him. we just got married in june and every 5 > > minutes he thinks i'm going to die. i have alot going on right now > > and just need to vent i guess. see i was a sick child but never to > > the extreme of constantly being sick it went about every other year > > i would get really sick. well now it seems like every six months i > > am getting sick and don't know what to do about it. i know they say > > a positive attitude helps keep you healthy but how can you have one > > when something bad has happened to you in the last three years. i > > just feel like everything i've ever wanted out of life i will never > > be able to do. like be a teacher, or have a child, or go through a > > pregnancy. i would love to do those things but it will never happen. > > i might be able to adopt but that could be years away yet. > > thank you for listening > > mindy > > > > > > > > > Joanne M. Schum > > Cystic Fibrosis > Bi-lateral Lung Transplant Recipient > September 12, 1997 > University of North Carolina Hospitals Chapel Hill > Residence: Upstate New York > email: luckylungsforjo@a... > Manager of: Transplant Support - Lung, Heart/Lung, Heart > http://groups.msn.com/TransplantSupportLungHeartLungHeart > > " Taking Flight - Inspirational Stories of Lung Transplantation " > Compiled by Joanne Schum > Authored by lung recipients around the world > http://www.trafford.com/robots/02-0497.html > http://www.trafford.com/ > > > > > > Quote Link to comment Share on other sites More sharing options...
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