Guest guest Posted August 4, 2008 Report Share Posted August 4, 2008 Gosh Sherry, I hope you will be feeling better soon. You've got to take care of YOU. I am slowly realizing that part of the disease we have. I found I just couldn't do the things I used to do and even now when I push myself which isn't much anymore, I get SOB. Your body seems to let you know where you are and what you've got to work with. I so enjoyed talking with you on our " chat " Thurs. night. I LOVE YOU THIS DAY!! MARY LOU RICHMOND VA IPF -02 > > My visit on Friday finally persuaded me that I am going to have to > pursue a transplant. They did PFT's & it showed me that I have > declined quite a bit. I guess I wasn't able to acknowledge that fact > previously. I had to make the effort to get back to where I was > before > the pneumonia the first of March. > > Now my vist to Vanderbilt the first part of October will be to see > how > I proceed. First, the GI (liver) doctor must approve I am able to > take the additional immunosuppresant medication necessary after > transplant > with my liver disease. ly, I doubt this will be a > problem, but I am not the doctor. > > So wish me luck. I did get them to upgrade me in oxygen as I could > not > pass the 6 minute walk test using 6L continuous flow. I've been very > careful not to overdo, but it's difficult when you don't get enough > oxygen, right? Sometimes it is hard to understand just how ill you > are! > > Sorry to hear about Vicky passing. Others have many more problems > than > myself. At least I may have some hope & decided I'll go as far as I > can until I am told " NO! (Jesus holding my hand all the way). " > > Sherry , age 64 > NSIP '98, PH, Bronchiectasis & PBC (liver disease) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2008 Report Share Posted August 4, 2008 Sherry, We all take our own path with regard to coping with the realizations that come along with this disease. It's a process and doesn't happen all at once. (Thank God for that. I think my head would explode if I tried to deal with all the ramifications all at once.) And I agree it is hard to understand how ill we are. Whenever I go to a new doctor my sister always tells me, "Make sure they understand that you are sicker than you look." Because to look at me, I appear to be quite well. That fact probably helps to keep me in a state of denial too. I don't see a sick person looking back at me from the mirror. I wish you a smooth road through the transplat evaluation process and a strong healthy pair of lungs!!! Beth Age 48 Fibrotic NSIP 06/06 UCTD 07/08 Change everything. Love and Forgive Univ TN Doctor Visit My visit on Friday finally persuaded me that I am going to have to pursue a transplant. They did PFT's & it showed me that I have declined quite a bit. I guess I wasn't able to acknowledge that fact previously. I had to make the effort to get back to where I was before the pneumonia the first of March. Now my vist to Vanderbilt the first part of October will be to see how I proceed. First, the GI (liver) doctor must approve I am able to take the additional immunosuppresant medication necessary after transplantwith my liver disease. ly, I doubt this will be a problem, but I am not the doctor. So wish me luck. I did get them to upgrade me in oxygen as I could not pass the 6 minute walk test using 6L continuous flow. I've been very careful not to overdo, but it's difficult when you don't get enough oxygen, right? Sometimes it is hard to understand just how ill you are!Sorry to hear about Vicky passing. Others have many more problems than myself. At least I may have some hope & decided I'll go as far as I can until I am told "NO! (Jesus holding my hand all the way)."Sherry , age 64NSIP '98, PH, Bronchiectasis & PBC (liver disease) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2008 Report Share Posted August 4, 2008 Sherry... I'm sure sorry your pfts show a decline. That is always dreaded news to hear. You bet I wish you luck when you go to Vanderbilt. Tons and tons of luck. I think I have been clear but just in case, our "pink writing" Vicky is still with us. The Vicky that died is the Vicky that was Steve's wife. Part of the PNW gathering in June (over Father's Day). Rich and I became very close to them in just a few hours. I cannot believe she went from sick to dying in such a short span of time. MamaSher, age 69. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Univ TN Doctor Visit My visit on Friday finally persuaded me that I am going to have to pursue a transplant. They did PFT's & it showed me that I have declined quite a bit. I guess I wasn't able to acknowledge that fact previously. I had to make the effort to get back to where I was before the pneumonia the first of March. Now my vist to Vanderbilt the first part of October will be to see how I proceed. First, the GI (liver) doctor must approve I am able to take the additional immunosuppresant medication necessary after transplantwith my liver disease. ly, I doubt this will be a problem, but I am not the doctor. So wish me luck. I did get them to upgrade me in oxygen as I could not pass the 6 minute walk test using 6L continuous flow. I've been very careful not to overdo, but it's difficult when you don't get enough oxygen, right? Sometimes it is hard to understand just how ill you are!Sorry to hear about Vicky passing. Others have many more problems than myself. At least I may have some hope & decided I'll go as far as I can until I am told "NO! (Jesus holding my hand all the way)."Sherry , age 64NSIP '98, PH, Bronchiectasis & PBC (liver disease) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2008 Report Share Posted August 4, 2008 Sherry, my pulmonary doctor told me to turn up the O2 if I needed it. Since our lung disease is restrictive, we can turn up the O2. Sorry to hear about your PFTs. Have you been to pulmonary rehab? I know exercise is so important and if I miss, it affects me negatively. Toodles! Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl >> Sherry... I'm sure sorry your pfts show a decline. That is always dreaded news to hear.> You bet I wish you luck when you go to Vanderbilt. Tons and tons of luck.> > I think I have been clear but just in case, our "pink writing" Vicky is still with us. The Vicky that died is the Vicky that was Steve's wife. Part of the PNW gathering in June (over Father's Day). Rich and I became very close to them in just a few hours. I cannot believe she went from sick to dying in such a short span of time.> > MamaSher, age 69. IPF 3-06, OR. > Nasturtiums> Don't fret about tomorrow, God is already there!> > Univ TN Doctor Visit> > > My visit on Friday finally persuaded me that I am going to have to > pursue a transplant. They did PFT's & it showed me that I have > declined quite a bit. I guess I wasn't able to acknowledge that fact > previously. I had to make the effort to get back to where I was > before > the pneumonia the first of March. > > Now my vist to Vanderbilt the first part of October will be to see > how > I proceed. First, the GI (liver) doctor must approve I am able to > take the additional immunosuppresant medication necessary after > transplant> with my liver disease. ly, I doubt this will be a > problem, but I am not the doctor. > > So wish me luck. I did get them to upgrade me in oxygen as I could > not > pass the 6 minute walk test using 6L continuous flow. I've been very > careful not to overdo, but it's difficult when you don't get enough > oxygen, right? Sometimes it is hard to understand just how ill you > are!> > Sorry to hear about Vicky passing. Others have many more problems > than > myself. At least I may have some hope & decided I'll go as far as I > can until I am told "NO! (Jesus holding my hand all the way)."> > Sherry , age 64> NSIP '98, PH, Bronchiectasis & PBC (liver disease)> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2008 Report Share Posted August 4, 2008 Jane I reiterate what you said as I was at my pulmonologist today and he reiterated to just turn it up to what I needed to maintain my sats. I also know the importance of exercise to me. I also found out today why I can do better on a treadmill than I can do bending, lifting or carrying anything. With the treadmill being aerobic you breathe well on it. You inhale and exhale properly. When you use effort in bending, lifting or carrying you tend to slow way down in your breathing. Sometimes if you lift something heavy enough you hold your breath as you do. In aerobic exercises you cause the body to use oxygen to create energy. In anaerobic exercises such as weight lifting or carrying heavy items the body creates the energy without oxygen. I know that all sounds strange but it makes sense when you think about it. It sure is the case with me. Now I know why my sats drop more carrying a heavy package from the car to the kitchen than walking on the treadmill. What he also told me about those things that drop me too much was best to avoid them but sometimes we just can't and generally the sats return quickly so occasional isn't major problem. Also, now I'll concentrate on breathing more when I do them. > > > > Sherry... I'm sure sorry your pfts show a decline. That is always > dreaded news to hear. > > You bet I wish you luck when you go to Vanderbilt. Tons and tons of > luck. > > > > I think I have been clear but just in case, our " pink writing " Vicky > is still with us. The Vicky that died is the Vicky that was Steve's > wife. Part of the PNW gathering in June (over Father's Day). Rich and I > became very close to them in just a few hours. I cannot believe she went > from sick to dying in such a short span of time. > > > > MamaSher, age 69. IPF 3-06, OR. > > Nasturtiums > > Don't fret about tomorrow, God is already there! > > > > Univ TN Doctor Visit > > > > > > My visit on Friday finally persuaded me that I am going to have to > > pursue a transplant. They did PFT's & it showed me that I have > > declined quite a bit. I guess I wasn't able to acknowledge that fact > > previously. I had to make the effort to get back to where I was > > before > > the pneumonia the first of March. > > > > Now my vist to Vanderbilt the first part of October will be to see > > how > > I proceed. First, the GI (liver) doctor must approve I am able to > > take the additional immunosuppresant medication necessary after > > transplant > > with my liver disease. ly, I doubt this will be a > > problem, but I am not the doctor. > > > > So wish me luck. I did get them to upgrade me in oxygen as I could > > not > > pass the 6 minute walk test using 6L continuous flow. I've been very > > careful not to overdo, but it's difficult when you don't get enough > > oxygen, right? Sometimes it is hard to understand just how ill you > > are! > > > > Sorry to hear about Vicky passing. Others have many more problems > > than > > myself. At least I may have some hope & decided I'll go as far as I > > can until I am told " NO! (Jesus holding my hand all the way). " > > > > Sherry , age 64 > > NSIP '98, PH, Bronchiectasis & PBC (liver disease) > > > Quote Link to comment Share on other sites More sharing options...
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