Guest guest Posted September 26, 2001 Report Share Posted September 26, 2001 Donna, Ann occasionally uses oxygen and we have a cylinder with mask in the bedroom. Her biggest problem has always been the trachea and up to about 9 months ago she would have flares which produced thick mucous which was difficult to clear. Also she had several spells of sickness and fainting in the middle of the night. In both cases the oxygen was enormously helpful in stabilizing the breathing. I am not sure whether it was the oxygen or psychological , i.e. reassuring her that she would not actually run out of breath and die. That does not matter ; it worked and is therefore worth having. Fortunately a change to Methotrexate and possibly a new inhaler ( Flixotide ) have produced a significant improvement. On the 2 or 3 occasions we had to call ambulance emergency services they have also used it. They have also used the oxygen exchange rate monitor ( on the finger ) to check on Ann . Again because it is the trachea - not the bronchi - which is Ann's problem area the rate has normally been in the high 90's. I am not a medic but down to 70's sounds significant ( even in intensive care after bowel cancer surgery Ann remained in the 90's - its amazing what you remember from staring at life support monitors ) hope this is useful john IMPORTANT NOTICE: This email is confidential, may be legally privileged, and is for the intended recipient only. Access, disclosure, copying, distribution, or reliance on any of it by anyone else is prohibited and may be a criminal offence. Please delete if obtained in error and email confirmation to the sender. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2001 Report Share Posted September 26, 2001 Donna, Ann occasionally uses oxygen and we have a cylinder with mask in the bedroom. Her biggest problem has always been the trachea and up to about 9 months ago she would have flares which produced thick mucous which was difficult to clear. Also she had several spells of sickness and fainting in the middle of the night. In both cases the oxygen was enormously helpful in stabilizing the breathing. I am not sure whether it was the oxygen or psychological , i.e. reassuring her that she would not actually run out of breath and die. That does not matter ; it worked and is therefore worth having. Fortunately a change to Methotrexate and possibly a new inhaler ( Flixotide ) have produced a significant improvement. On the 2 or 3 occasions we had to call ambulance emergency services they have also used it. They have also used the oxygen exchange rate monitor ( on the finger ) to check on Ann . Again because it is the trachea - not the bronchi - which is Ann's problem area the rate has normally been in the high 90's. I am not a medic but down to 70's sounds significant ( even in intensive care after bowel cancer surgery Ann remained in the 90's - its amazing what you remember from staring at life support monitors ) hope this is useful john IMPORTANT NOTICE: This email is confidential, may be legally privileged, and is for the intended recipient only. Access, disclosure, copying, distribution, or reliance on any of it by anyone else is prohibited and may be a criminal offence. Please delete if obtained in error and email confirmation to the sender. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2001 Report Share Posted September 26, 2001 Hi : Thanks for responding. I have been on Methotrexate 15 mg per week, Medrol (prednisone) daily, 8 mg to 64 during a flare. They put on Enbril 25 mg, two times per week and since they added the Enbril I have had a much easier time breathing and my oxygen levels are normal. Does Ann have any stents. Why and when did they do the trach on her. This is one thing that scares me. I understand that most of my problem is the bronch tubes but I think that my trachea is ok. As far as remembering when my oxygen level went so low was one reason they checked it. I complained that I was having a lot of recent memory loss. I have had episodes prior to the big one in which my memory was really really bad and my breathing was not very difficult but I understand that I was not getting enough oxygen. I addition to the meds above I also do breathing treatments at home. They really help, when I'm flared I do them three times per day and when I'm not flared I just use them occasionally. I will ask my doctor about the new inhaler as that is one that I have never been on. I hope Ann is doing OK. Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2001 Report Share Posted September 26, 2001 Hi : Thanks for responding. I have been on Methotrexate 15 mg per week, Medrol (prednisone) daily, 8 mg to 64 during a flare. They put on Enbril 25 mg, two times per week and since they added the Enbril I have had a much easier time breathing and my oxygen levels are normal. Does Ann have any stents. Why and when did they do the trach on her. This is one thing that scares me. I understand that most of my problem is the bronch tubes but I think that my trachea is ok. As far as remembering when my oxygen level went so low was one reason they checked it. I complained that I was having a lot of recent memory loss. I have had episodes prior to the big one in which my memory was really really bad and my breathing was not very difficult but I understand that I was not getting enough oxygen. I addition to the meds above I also do breathing treatments at home. They really help, when I'm flared I do them three times per day and when I'm not flared I just use them occasionally. I will ask my doctor about the new inhaler as that is one that I have never been on. I hope Ann is doing OK. Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2003 Report Share Posted May 8, 2003 hi this mike i'm a little new here i have already talked to a couple of nice people in here i have a daughter with cf she is now 15 years old in my mind she is the greatest kid on the planet shes my best friend she now is on oxygen i am trying to ween her of it she is on the list for new lungs i was if anybody has the same thing going on out there if anybody wants to e mail me and talk that would be a good thing thanks mike Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2003 Report Share Posted May 9, 2003 Mike, We are all with you in our hearts. The love between a father & daughter is so very special. Not all have that and it is nice to hear from ones who do. As for the o2, why are you trying to ween her off of it? I thought it was needed more than ever as a patient gets closer to time for a transplant. Just wondering. Aunt B Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2003 Report Share Posted May 9, 2003 Hey Mike, My heart goes out to you. I am not in the exact same position as you but I just wanted to let you know that there are people out there who are and that you are not alone in this. I know how you feel about your daughter. I have that kind of relationship with my mother. I must call her 4 or 5 times a day just to say hello! She is my best friend. I'm 28, my mom is 66. It's hard to watch her health deteriorate and so much harder for you as a parent to watch that of your child. It's hard to think of life without them in it. I hope that you find someone you can connect with so that you can release some of the emotional pressure I'm sure you have built up. Don't be afraid to post your fears here. This list has one hell of a shoulder to cry on! Take care - Michele B > hi this mike i'm a little new here i have already talked to a couple > of nice people in here i have a daughter with cf she is now 15 years > old in my mind she is the greatest kid on the planet shes my best > friend she now is on oxygen i am trying to ween her of it she is on > the list for new lungs i was if anybody has the same thing going on > out there if anybody wants to e mail me and talk that would be a good > thing thanks mike Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2003 Report Share Posted May 10, 2003 Hi Mike, Not sure I have emailed you before. I am excited about your daughter waiting for new lungs. I am now about to have my 6th anniversary since my lung transplant and my sister just had her 2nd anniversary - we both have CF. What center is she listed at? How much longer of a wait? I was on oxygen also pre tx. My question or curiosity is why you are trying to wean her from the O2? Is this something a doctor recommended? Being she needs new lungs, I am sure her lungs are not in good shape and cannot imagine trying to get her off of it and not sure why someone would want to get off of it. Low 02 saturation when you have end stage lung illness is common and really expected. O2 does not hurt her. In fact, we healthy people are all addicted to it, but we are absorbing more than she is. Being low of O2 can effect thinking ( the brain) but more important having not enough 02 can damage the heart. The heart is racing and working harder becuase the lung damage is severe, and by depriving the heart of more O2 is making it work even harder. Do ask her doctor if this is a good idea. I am only concerned that you may of heard something like " I don't want to be addicted to O2 " but at this stage, she needs the O2 to stay healthy. JOanne luckylungsforjo@... > hi this mike i'm a little new here i have already talked to a couple > of nice people in here i have a daughter with cf she is now 15 years > old in my mind she is the greatest kid on the planet shes my best > friend she now is on oxygen i am trying to ween her of it she is on > the list for new lungs i was if anybody has the same thing going on > out there if anybody wants to e mail me and talk that would be a good > thing thanks mike Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2004 Report Share Posted January 13, 2004 Wow n, that's incredible about your oxygen. I bet you feel so much better! I didn't know that too could be partially reversed. Joan LAP RNY 11/18/03 Dr. Higa, Fresno, CA 282pre-op/275surg/236/140 Re: My Surgery Story I was on a breathing machine 24/7, and had portable tanks for when I absolutely had to leave the house. Now after 5 months, I am still on oxygen but am ony required to use it when I sleep. I am petrified of catching that string of flu that is going around even though I have had a flu shot. Friends and family have had it and it really hits your lungs hard. The thought of haing my lung drained for the third time is extremely scary for me as I wouldn't wish that pain on my worst enemy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2004 Report Share Posted January 13, 2004 Wow n, that's incredible about your oxygen. I bet you feel so much better! I didn't know that too could be partially reversed. Joan LAP RNY 11/18/03 Dr. Higa, Fresno, CA 282pre-op/275surg/236/140 Re: My Surgery Story I was on a breathing machine 24/7, and had portable tanks for when I absolutely had to leave the house. Now after 5 months, I am still on oxygen but am ony required to use it when I sleep. I am petrified of catching that string of flu that is going around even though I have had a flu shot. Friends and family have had it and it really hits your lungs hard. The thought of haing my lung drained for the third time is extremely scary for me as I wouldn't wish that pain on my worst enemy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2004 Report Share Posted January 13, 2004 n, you mean you'll be off the oxygen completely?? That is amazing. I've had knee pain for about 15 years, loosing the cartilage. Last year it got so bad, I thought I wouldn't be able to put the brake on in the car. I did, but was in tears. I saw an orthopedist, who did an MRI and x-rays, and told me what I think I already knew, arthritis. It still doesn't make sense though that the pains were so sharp. It's only happened twice for about 4-5 days. So, take a pill, but unfortunately the pills prescribed are Ibuprofen based. I had to explain this to my pcp. I had been told by the kidney doctor to never take Ibuprofen because of the kidney problems. They said that was all there was to take, so I haven't been taking anything, especially since the surgery. The kidney doctor gave me a RX for something else, but being leery of medications, I researched it first, and the side effects and interactions with medications I was already taking was scary, so I didn't get it. But as I lose weight, the pain is less and less. I haven't had any pain in one knee for several weeks, and only minimal in the other knee. So, when you do see the doctor, if he/she prescribes medication, find out if it's Ibuprofen based. I too hope it isn't anything major. Good luck. Joan LAP RNY 11/18/03 Dr. Higa, Fresno, CA 282pre-op/275surg/236/140 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2004 Report Share Posted January 13, 2004 n, you mean you'll be off the oxygen completely?? That is amazing. I've had knee pain for about 15 years, loosing the cartilage. Last year it got so bad, I thought I wouldn't be able to put the brake on in the car. I did, but was in tears. I saw an orthopedist, who did an MRI and x-rays, and told me what I think I already knew, arthritis. It still doesn't make sense though that the pains were so sharp. It's only happened twice for about 4-5 days. So, take a pill, but unfortunately the pills prescribed are Ibuprofen based. I had to explain this to my pcp. I had been told by the kidney doctor to never take Ibuprofen because of the kidney problems. They said that was all there was to take, so I haven't been taking anything, especially since the surgery. The kidney doctor gave me a RX for something else, but being leery of medications, I researched it first, and the side effects and interactions with medications I was already taking was scary, so I didn't get it. But as I lose weight, the pain is less and less. I haven't had any pain in one knee for several weeks, and only minimal in the other knee. So, when you do see the doctor, if he/she prescribes medication, find out if it's Ibuprofen based. I too hope it isn't anything major. Good luck. Joan LAP RNY 11/18/03 Dr. Higa, Fresno, CA 282pre-op/275surg/236/140 Quote Link to comment Share on other sites More sharing options...
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