Guest guest Posted June 14, 2009 Report Share Posted June 14, 2009 Elba, Welcome to Breathe Support. I understand from the information you sent when you requested to join the group that you are only 23 years old. It's difficult enough to cope with this illness at my age (I'm 49) but it's unimagninable for someone as young as you are. My son is 23 and it makes my blood run cold to think of him with this disease. Please feel welcome to share whatever you want and ask any questions at all. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Saturday, June 13, 2009 10:52:43 PMSubject: HI TO ALL THANK TO ALL FOR LETTING ME BE PART OF THIS GROUP I HAVE BEEN LIVING WITH PF FOR 3 YEARS NOWIT GREAT TO HAVE PEOPLE TO RELATE TO I AM 23 I HAVE AND AND JUST PARY TO GOD I CAN LIVE TO SEE HIM GROW UP Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2009 Report Share Posted June 14, 2009 You have pf in the form of NISP since 11/06 i live not knowing when my last days would be given that everyone keeps talking how people with pf only live 3-5 years how do deal with. my husband tells to quit school and stay with our son so can reamenber his mother i feel i should not have to give up my life. i am being wrong? To: Breathe-Support Sent: Sunday, June 14, 2009 8:36:47 AMSubject: Elba Elba, Welcome to Breathe Support. I understand from the information you sent when you requested to join the group that you are only 23 years old. It's difficult enough to cope with this illness at my age (I'm 49) but it's unimagninable for someone as young as you are. My son is 23 and it makes my blood run cold to think of him with this disease. Please feel welcome to share whatever you want and ask any questions at all. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Tanairi <babynita86 (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Saturday, June 13, 2009 10:52:43 PMSubject: HI TO ALL THANK TO ALL FOR LETTING ME BE PART OF THIS GROUP I HAVE BEEN LIVING WITH PF FOR 3 YEARS NOWIT GREAT TO HAVE PEOPLE TO RELATE TO I AM 23 I HAVE AND AND JUST PARY TO GOD I CAN LIVE TO SEE HIM GROW UP Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2009 Report Share Posted June 14, 2009 Elba, I'm so sorry you are going through this....it's horrible. You should not give up on living your life!! Try not to think to much about predictions about how long you will live. The truth is no one knows how this disease will progress in each individual person. There area many people on this board who have outlived the predictions by years. Whether you quit school to spend more time with your son is a personal decision. You have to do what feels best to you. Perhaps there is a compromise? Go to school part time? I have no idea if that's an option but it's best to give yourself the widest variety of options. Do everything you can to take care of yourself. Eat well, get lots of rest,use your oxygen if you are supposed to, accept help from anyone who offers it. I'm glad you found this board. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Sunday, June 14, 2009 9:14:50 AMSubject: Re: Elba You have pf in the form of NISP since 11/06 i live not knowing when my last days would be given that everyone keeps talking how people with pf only live 3-5 years how do deal with. my husband tells to quit school and stay with our son so can reamenber his mother i feel i should not have to give up my life. i am being wrong? From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sunday, June 14, 2009 8:36:47 AMSubject: Elba Elba, Welcome to Breathe Support. I understand from the information you sent when you requested to join the group that you are only 23 years old. It's difficult enough to cope with this illness at my age (I'm 49) but it's unimagninable for someone as young as you are. My son is 23 and it makes my blood run cold to think of him with this disease. Please feel welcome to share whatever you want and ask any questions at all. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Tanairi <babynita86 (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Saturday, June 13, 2009 10:52:43 PMSubject: HI TO ALL THANK TO ALL FOR LETTING ME BE PART OF THIS GROUP I HAVE BEEN LIVING WITH PF FOR 3 YEARS NOWIT GREAT TO HAVE PEOPLE TO RELATE TO I AM 23 I HAVE AND AND JUST PARY TO GOD I CAN LIVE TO SEE HIM GROW UP Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2009 Report Share Posted June 14, 2009 Elba... nearly every one of us has been told we have 3-5 years from dx (diagnosis). I was told the same thing in Mar, 2006 and I've remained fairly stable since. We learn here we have no expiration date stamped on our butt so not to worry right now about dying. Get your affairs in order and you will feel better having done so. Your question about staying home with your son is so personal that I won't try and answer for YOU... If you have given the matter extensive thought then I guess that is YOUR decision and would not be WRONG for YOU. It would be a wrong decision for ME. I want my last years spent as close to my family as I can get. There are many things you can teach your son and loving him is a big job...only you can prepare him for the time when you will have to leave him... MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! HI TO ALL THANK TO ALL FOR LETTING ME BE PART OF THIS GROUP I HAVE BEEN LIVING WITH PF FOR 3 YEARS NOWIT GREAT TO HAVE PEOPLE TO RELATE TO I AM 23 I HAVE AND AND JUST PARY TO GOD I CAN LIVE TO SEE HIM GROW UP Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2009 Report Share Posted June 14, 2009 your right i will think about it maybe hubby it right thank you for help To: Breathe-Support Sent: Sunday, June 14, 2009 2:59:53 PMSubject: Re: Elba Elba... nearly every one of us has been told we have 3-5 years from dx (diagnosis). I was told the same thing in Mar, 2006 and I've remained fairly stable since. We learn here we have no expiration date stamped on our butt so not to worry right now about dying. Get your affairs in order and you will feel better having done so. Your question about staying home with your son is so personal that I won't try and answer for YOU... If you have given the matter extensive thought then I guess that is YOUR decision and would not be WRONG for YOU. It would be a wrong decision for ME. I want my last years spent as close to my family as I can get. There are many things you can teach your son and loving him is a big job...only you can prepare him for the time when you will have to leave him... MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! HI TO ALL THANK TO ALL FOR LETTING ME BE PART OF THIS GROUP I HAVE BEEN LIVING WITH PF FOR 3 YEARS NOWIT GREAT TO HAVE PEOPLE TO RELATE TO I AM 23 I HAVE AND AND JUST PARY TO GOD I CAN LIVE TO SEE HIM GROW UP Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2009 Report Share Posted June 14, 2009 Elba... I can imagine the dreams you have have changed now and it hurts. My dreams changed too when I found I have PF. Maybe staying home is a sign to you that your dreams are over. Maybe not. There are correspondence classes, part-time, etc. Find a way you can do BOTH. One of the things we learn very quickly here is to prioritize our lives, our medical needs, and as well what DOESN'T work for us. Actually it's too bad we didn't learn some of these skills long before now. You'll be ok. Everything we do has so many side effects. Hell if we do and hell if we don't ,sometimes. Keep on keepin' on. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! HI TO ALL THANK TO ALL FOR LETTING ME BE PART OF THIS GROUP I HAVE BEEN LIVING WITH PF FOR 3 YEARS NOWIT GREAT TO HAVE PEOPLE TO RELATE TO I AM 23 I HAVE AND AND JUST PARY TO GOD I CAN LIVE TO SEE HIM GROW UP Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2009 Report Share Posted June 14, 2009 thank you for all your help i will put alot of thinking to this and see what to i wanna spend time with my son but i show him no illness should stop you i was a pre med major b4 the pf now i may major is pharm d i taking it slow just 12 credits enough to get fasa when i was my mom died and i saw all of that of her illness and how she died slow and painfull i dont want the same for my son some times my hubby dose not get it he great and love me and i love him i wanna try to keep on living a "normal" life if i where to get bad news that there was no hope at all for me and all i had to do was just to wait to die i give i sec of my life to son and hubby i have faith to live a long life to at least see him to the age of ten or more even maybe my first grand child but thank you all for your support To: Breathe-Support Sent: Sunday, June 14, 2009 4:20:35 PMSubject: Re: Elba Elba... I can imagine the dreams you have have changed now and it hurts. My dreams changed too when I found I have PF. Maybe staying home is a sign to you that your dreams are over. Maybe not. There are correspondence classes, part-time, etc. Find a way you can do BOTH. One of the things we learn very quickly here is to prioritize our lives, our medical needs, and as well what DOESN'T work for us. Actually it's too bad we didn't learn some of these skills long before now. You'll be ok. Everything we do has so many side effects. Hell if we do and hell if we don't ,sometimes. Keep on keepin' on. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! HI TO ALL THANK TO ALL FOR LETTING ME BE PART OF THIS GROUP I HAVE BEEN LIVING WITH PF FOR 3 YEARS NOWIT GREAT TO HAVE PEOPLE TO RELATE TO I AM 23 I HAVE AND AND JUST PARY TO GOD I CAN LIVE TO SEE HIM GROW UP Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2009 Report Share Posted June 14, 2009 Elba, Welcome to the Breath Support group. Has your doctor recommended a lung transplant? At age 23 I would think you could be eligible.--- I haven't been on the website on a regular basis since I had my transplant in Aug. 07 which was amazing as I was only on the list for 9 days. However, I apparently had been misdiagnosed for a number of years with just Asthma or Bronchitis, and finally a lung scan was done in Oct. 07 then a Bronchoscope and bipsy in Nov. 07 which was diagnosed as IPF End Stage. The pulmonary doctor in IL who did the lung scan wanted to do an open lung biopsy, but I got a second opinion from a pulmonary doctor in IN who recommended the outpatient biopsy instead of the major surgery one. Feb. 07 he said I had a year to live, but I was tested between April and June of 07, and when I made the list on Aug. 13, 2007 they recommended only a single transplant. I was glad to hear that as having a bilateral at my age had sounded scary to me. In spite of 3 different rejection treatments since the transplant and all the side effects from the various meds I am doing well. I flew to HI in April to vacation and visit one of my sons and family there for 37 days; and went into the ocean almost every day doing my physical therapy exercises, then started swimming again (first time in 3 or 4 years); and even snorkeled a little bit. I hope you will see more than one pulmonary doctor and possibly get recommended for a transplant so you can see your son grow up. My single lung transplant and Kerry Geron's bilateral were both done at Clarian Transplant Center, Methodist Hospital, Indianapolis. I highly recommend that center. Best wishers to you. Love and Aloha, Judy (Ohio) IPF 11/06 TX 8/07 In Breathe-Support , Beth wrote: > > Elba, > Welcome to Breathe Support. I understand from the information you sent when you requested to join the group that you are only 23 years old. It's difficult enough to cope with this illness at my age (I'm 49) but it's unimagninable for someone as young as you are. My son is 23 and it makes my blood run cold to think of him with this disease. > Please feel welcome to share whatever you want and ask any questions at all. > > Beth > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > ________________________________ > > To: Breathe-Support > Sent: Saturday, June 13, 2009 10:52:43 PM > Subject: HI TO ALL > > > > > > THANK TO ALL FOR LETTING ME BE PART OF THIS GROUP I HAVE BEEN LIVING WITH PF FOR 3 YEARS NOWIT GREAT TO HAVE PEOPLE TO RELATE TO I AM 23 I HAVE AND AND JUST PARY TO GOD I CAN LIVE TO SEE HIM GROW UP > Quote Link to comment Share on other sites More sharing options...
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