Guest guest Posted January 1, 2004 Report Share Posted January 1, 2004 Maggie, Gent and Ceftaz usually sorts out, the big pain is the blood tests though. we could manage at home without needing the ward at all if it was not for the darn blood tests for Gent Levels. Can I ask why you had your central line removed...wsa it a problem or did they remove it because your treatment had finnished? 's first ventral line lasted 6 months then we had a problem with overgrowth of scar tissue blocking the end. Hopefully this one should last years. I am reading that they just removed it because you had finished a course of antibiotics....with this disease they should leave it where it is. I have just settled to bed and it looks like we may be back on the oxygen tonight. Rosie has a really nasty cold and has been rough the last few days...I had hoped that would escape but his sats are dropping as he lays down. here we go again girls...and boys! hugs Tina Hillier Mum to 4 wonderful kids 13 DS Rosie 11 CdLS 6 and 5 Isle of Wight UK www.cdlsrosie.homestead.com http://uk.photos.yahoo.com/tdlhillier ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2004 Report Share Posted January 2, 2004 Maggie, I am so sorry you had such an ordeal. The last time I was in the hospital in July the pulmonary doctor, not mine--but one in his group, suggested that I get a pic line. Someone came in and said that the doctor ordered it. I asked her to explain it. She said that it would save me from having to be stuck so much. After she explained it, I told her that I was not interested in having it done. They only moved the IV line twice in one week. So sorry that they treated you this way. Some people just don't seem to understand how these treatments and their attitude can make a situation worse. I hope things get better for you soon--it's about time. Love, Norma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2004 Report Share Posted January 2, 2004 They removed the line because it was starting to get infected. It was a pic line in my arm. I finished my last day of antibiotics and then they removed it the day after Christmas. Two days ago I had a Groshong catheter inserted in my chest. It is a lot more painful than the pic and can stay in for months. The radiologist who did the procedure would not allow me to have enough demurol, so I was awake during the whole procedure and could feel all 20 of the numbing shots. I cried like a baby through the whole procedure and begged him for something to help me relax or just go to sleep. He was so mean. He said I'd already had enough. But I could feel everything! It was so scary. My hands are shaking just writing about it. And now I am in so much pain. Unnecessary pain. It's like that doctor did the procedure and then punched me in the neck. I had an awful bruise on my neck at the entry site when I was in recovery. The nurses were horrified. How do some of these doctors get their licenses? I'm not usually one to complain (this list being an exception), but I think I'm going to write a letter to the hospital about my experience. Maggie On Thursday, January 1, 2004, at 04:04 PM, Tina Hillier wrote: > I am reading that they just removed it because you had finished a > course of antibiotics....with this disease they should leave it where > it is. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2004 Report Share Posted January 2, 2004 Maggie, I'm so sorry that you had a bad experience-the pain sounds terrifyingly awful. I would encourage you to write to the hospital. Keep a copy for yourself too. I had a bad experience when I had an artery biopsied on the side of my head.....blood everywhere.....no nurse around....the doctor shouted for someone......no one came.....he left me in a pool of blood to look for someone to do suction.....I could have bled to death.........fortunately I didn't and am alive and well!!!! However the hospital needs to be told of your experience....do it today while you're still upset. State the time, date include all names and how bad it was for you. Hope you feel much better very soon. Maggie wrote: They removed the line because it was starting to get infected. It was a pic line in my arm. I finished my last day of antibiotics and then they removed it the day after Christmas. Two days ago I had a Groshong catheter inserted in my chest. It is a lot more painful than the pic and can stay in for months. The radiologist who did the procedure would not allow me to have enough demurol, so I was awake during the whole procedure and could feel all 20 of the numbing shots. I cried like a baby through the whole procedure and begged him for something to help me relax or just go to sleep. He was so mean. He said I'd already had enough. But I could feel everything! It was so scary. My hands are shaking just writing about it. And now I am in so much pain. Unnecessary pain. It's like that doctor did the procedure and then punched me in the neck. I had an awful bruise on my neck at the entry site when I was in recovery. The nurses were horrified. How do some of these doctors get their licenses? I'm not usually one to complain (this list being an exception), but I think I'm going to write a letter to the hospital about my experience.MaggieOn Thursday, January 1, 2004, at 04:04 PM, Tina Hillier wrote:> I am reading that they just removed it because you had finished a > course of antibiotics....with this disease they should leave it where > it is.Post your free ad now! Yahoo! Canada Personals Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2004 Report Share Posted May 4, 2004 A hello to the group from South Texas. I hope you guys don't mind the intrusion, but I'm Maggie 's husband, Reagan. Maggie asked me to write to the list to give you an update and ask a few questions. Maggie recently had surgery to have the infected upper left lobe of her lung removed. She seemed to come through the surgery just fine, but now, two weeks later, she is still in the hospital with chest tubes in place, and the surgeon has informed us that it never takes more than 10 days to get to the point where they can remove the tubes. Apparently the problem is that for some reason, her lung hasn't sealed and is leaking air, evidenced by the bubbles forming in the liquid that has drained through the chest tubes. He said that he will give it up to two more weeks to heal in the hospital (with the painful chest tubes still in place), and if it doesn't resolve itself by that point, he will go in for more surgery. This news has understandably really distressed and disheartened Maggie, and she'd like to know if anyone on the list has had any experience with this kind of problem. Also, if any of you are the praying type, we sure could use some now. Thanks for listening and I'll keep you posted. Reagan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2004 Report Share Posted May 4, 2004 Hi Reagan, Have been thinking about Maggie and wondering how she is travelling after her surgery. Sorry to know that things are not going as well as they could. Can't offer any advice about the procedure but rest assured you both have my ongoing prayerful support. Please keep us posted on how she's doing and give her a big hug (tubes permitting) from Elaine Re: Maggie A hello to the group from South Texas. I hope you guys don't mind the intrusion, but I'm Maggie 's husband, Reagan. Maggie asked me to write to the list to give you an update and ask a few questions. Maggie recently had surgery to have the infected upper left lobe of her lung removed. She seemed to come through the surgery just fine, but now, two weeks later, she is still in the hospital with chest tubes in place, and the surgeon has informed us that it never takes more than 10 days to get to the point where they can remove the tubes. Apparently the problem is that for some reason, her lung hasn't sealed and is leaking air, evidenced by the bubbles forming in the liquid that has drained through the chest tubes. He said that he will give it up to two more weeks to heal in the hospital (with the painful chest tubes still in place), and if it doesn't resolve itself by that point, he will go in for more surgery. This news has understandably really distressed and disheartened Maggie, and she'd like to know if anyone on the list has had any experience with this kind of problem. Also, if any of you are the praying type, we sure could use some now. Thanks for listening and I'll keep you posted. Reagan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2004 Report Share Posted May 4, 2004 Hi Reagan, Please tell Maggie my thoughts and prayers are with her right now. I haven't had experience of surgery, but I am sending lots of love and positive thoughts to Maggie for a quick recovery. Take care, and please keep us posted. With love, Bunny (Sydney, Australia) Re: Maggie A hello to the group from South Texas. I hope you guys don't mind the intrusion, but I'm Maggie 's husband, Reagan. Maggie asked me to write to the list to give you an update and ask a few questions. Maggie recently had surgery to have the infected upper left lobe of her lung removed. She seemed to come through the surgery just fine, but now, two weeks later, she is still in the hospital with chest tubes in place, and the surgeon has informed us that it never takes more than 10 days to get to the point where they can remove the tubes. Apparently the problem is that for some reason, her lung hasn't sealed and is leaking air, evidenced by the bubbles forming in the liquid that has drained through the chest tubes. He said that he will give it up to two more weeks to heal in the hospital (with the painful chest tubes still in place), and if it doesn't resolve itself by that point, he will go in for more surgery. This news has understandably really distressed and disheartened Maggie, and she'd like to know if anyone on the list has had any experience with this kind of problem. Also, if any of you are the praying type, we sure could use some now. Thanks for listening and I'll keep you posted. Reagan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2004 Report Share Posted May 5, 2004 Reagan, Please be assured that Maggie and you and your family continue to be in my thoughts and prayers. I live in Round Rock, Texas just north of Austin so I feel strongly connected to my South Texas neighbors. With Love and Prayers, Norma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2004 Report Share Posted May 5, 2004 Hello Reagan , have had similar surgery ( lower two thirds of left lung removed 10 yrs ago ) to Maggie. Air was still bubbling thru, 2 weeks after surgery, and had a further op to resuture the part that was leaking (have been told that lung tissue is like cotton wool to sew - a mattress style stitch is used to get maximum hold on the tissue !!) Can remember my feelings at the time when all didn't go to plan - very disappointed, worried, & scared about what was to happen next...in the event I was in hosp. for approx 6 weeks. You need to make sure Maggie doesn't leave hospital (how ever much she's busting to get home ! ) til the surgeon is absolutely sure there's no further air leaks as any infection getting into the pleural (chest ) cavity from the lung, will cause a lot more problems and lung collapse from air / fluid build up (my situation afterwards) Will praying for you guys ...... cheers Craig Re: Maggie > A hello to the group from South Texas. I hope you guys don't mind the > intrusion, but I'm Maggie 's husband, Reagan. Maggie asked me > to write to the list to give you an update and ask a few questions. > > Maggie recently had surgery to have the infected upper left lobe of her > lung removed. She seemed to come through the surgery just fine, but > now, two weeks later, she is still in the hospital with chest tubes in > place, and the surgeon has informed us that it never takes more than 10 > days to get to the point where they can remove the tubes. Apparently > the problem is that for some reason, her lung hasn't sealed and is > leaking air, evidenced by the bubbles forming in the liquid that has > drained through the chest tubes. He said that he will give it up to > two more weeks to heal in the hospital (with the painful chest tubes > still in place), and if it doesn't resolve itself by that point, he > will go in for more surgery. > > This news has understandably really distressed and disheartened Maggie, > and she'd like to know if anyone on the list has had any experience > with this kind of problem. Also, if any of you are the praying type, > we sure could use some now. > > Thanks for listening and I'll keep you posted. > > Reagan > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2004 Report Share Posted May 5, 2004 Reagan, Please be assured of prayers for Mggie at this time. and also for you as you are watching the women you love in pain and distress. It is hard to watch thodse we love going through so much. However I kow God makes no mistakes and will be using this time with Maggie. I will pray for His peace, grace and comfort to feel very real to you at this time. With much love Tina Hillier Mum to , 13 years old and possesor of an Extra Special Chromosome. Rosie 11 ( who enjoys a life enhanced by the Joys and Trial of CdLS) 7, A budding Artist and Singer, And who is 5 years old and a lovely friend! Isle of Wight UK http://uk.photos.yahoo.com/tdlhillier mailto:tdlhillier@... www.cdlsrosie.homestead.com Yahoo! Messenger - Communicate instantly..."Ping" your friends today! Download Messenger Now Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2004 Report Share Posted May 5, 2004 On May 5, 2004, at 6:28 AM, Craig & Suzanne Carpinter wrote: > Hello Reagan , have had similar surgery ( lower two thirds of left lung > removed 10 yrs ago ) to Maggie. Air was still bubbling thru, 2 weeks > after > surgery, and had a further op to resuture the part that was leaking > (have > been told that lung tissue is like cotton wool to sew - a mattress > style > stitch is used to get maximum hold on the tissue !!) > Can remember my feelings at the time when all didn't go to plan - very > disappointed, worried, & scared about what was to happen next...in the > event > I was in hosp. for approx 6 weeks. > You need to make sure Maggie doesn't leave hospital (how ever much > she's > busting to get home ! ) til the surgeon is absolutely sure there's no > further air leaks as any infection getting into the pleural (chest > ) > cavity from the lung, will cause a lot more problems and lung collapse > from > air / fluid build up (my situation afterwards) > Will praying for you guys ...... cheers Craig Thanks to everyone for the support. Craig, can you tell me more about the second surgery? Maggie is already in a lot of pain from the chest tubes and incision as is dreading another operation. What exactly did they do to you (go in through the same incision? add more sutures? etc.)? What was the experience like? Also, you mentioned problems afterward with lung collapse. Was this after they went back in to suture you up a second time? If so, does that mean that second operation wasn't successful, or do they just expect that lung collapse and air/fluid buildup will happen regardless of more surgery. We are starved for information, so the more you can tell us, the better. Thanks! - Reagan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2004 Report Share Posted May 5, 2004 On May 5, 2004, at 6:28 AM, Craig & Suzanne Carpinter wrote: > Hello Reagan , have had similar surgery ( lower two thirds of left lung > removed 10 yrs ago ) to Maggie. Air was still bubbling thru, 2 weeks > after > surgery, and had a further op to resuture the part that was leaking > (have > been told that lung tissue is like cotton wool to sew - a mattress > style > stitch is used to get maximum hold on the tissue !!) > Can remember my feelings at the time when all didn't go to plan - very > disappointed, worried, & scared about what was to happen next...in the > event > I was in hosp. for approx 6 weeks. > You need to make sure Maggie doesn't leave hospital (how ever much > she's > busting to get home ! ) til the surgeon is absolutely sure there's no > further air leaks as any infection getting into the pleural (chest > ) > cavity from the lung, will cause a lot more problems and lung collapse > from > air / fluid build up (my situation afterwards) > Will praying for you guys ...... cheers Craig Thanks to everyone for the support. Craig, can you tell me more about the second surgery? Maggie is already in a lot of pain from the chest tubes and incision as is dreading another operation. What exactly did they do to you (go in through the same incision? add more sutures? etc.)? What was the experience like? Also, you mentioned problems afterward with lung collapse. Was this after they went back in to suture you up a second time? If so, does that mean that second operation wasn't successful, or do they just expect that lung collapse and air/fluid buildup will happen regardless of more surgery. We are starved for information, so the more you can tell us, the better. Thanks! - Reagan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2004 Report Share Posted May 5, 2004 Reagan, I had a lobectomy done two years ago and although I didn’t have the secondary problems that Maggie and Craig have had, I can certainly relate to the discomfort that Maggie is having. I feel very fortunate that I also have a very supportive husband—it helped a lot. She needs you to have a positive outlook and to keep reassuring her that the surgeon and medical staff know what they are doing. The pain does get a little better every day. It may take a little longer if she winds up having the second surgery, but there is light at the end of the tunnel. If you don’t mind posting the hospital’s address and Maggie’s room number, I’d like to send a card (they don’t allow flowers in ICU). Please give her a hug from me—but not too hard—and let her know that my prayers are with her. Barb Re: Maggie On May 5, 2004, at 6:28 AM, Craig & Suzanne Carpinter wrote: > Hello Reagan , have had similar surgery ( lower two thirds of left lung > removed 10 yrs ago ) to Maggie. Air was still bubbling thru, 2 weeks > after > surgery, and had a further op to resuture the part that was leaking > (have > been told that lung tissue is like cotton wool to sew - a mattress > style > stitch is used to get maximum hold on the tissue !!) > Can remember my feelings at the time when all didn't go to plan - very > disappointed, worried, & scared about what was to happen next...in the > event > I was in hosp. for approx 6 weeks. > You need to make sure Maggie doesn't leave hospital (how ever much > she's > busting to get home ! ) til the surgeon is absolutely sure there's no > further air leaks as any infection getting into the pleural (chest > ) > cavity from the lung, will cause a lot more problems and lung collapse > from > air / fluid build up (my situation afterwards) > Will praying for you guys ...... cheers Craig Thanks to everyone for the support. Craig, can you tell me more about the second surgery? Maggie is already in a lot of pain from the chest tubes and incision as is dreading another operation. What exactly did they do to you (go in through the same incision? add more sutures? etc.)? What was the experience like? Also, you mentioned problems afterward with lung collapse. Was this after they went back in to suture you up a second time? If so, does that mean that second operation wasn't successful, or do they just expect that lung collapse and air/fluid buildup will happen regardless of more surgery. We are starved for information, so the more you can tell us, the better. Thanks! - Reagan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2004 Report Share Posted May 5, 2004 Reagan, I had a lobectomy done two years ago and although I didn’t have the secondary problems that Maggie and Craig have had, I can certainly relate to the discomfort that Maggie is having. I feel very fortunate that I also have a very supportive husband—it helped a lot. She needs you to have a positive outlook and to keep reassuring her that the surgeon and medical staff know what they are doing. The pain does get a little better every day. It may take a little longer if she winds up having the second surgery, but there is light at the end of the tunnel. If you don’t mind posting the hospital’s address and Maggie’s room number, I’d like to send a card (they don’t allow flowers in ICU). Please give her a hug from me—but not too hard—and let her know that my prayers are with her. Barb Re: Maggie On May 5, 2004, at 6:28 AM, Craig & Suzanne Carpinter wrote: > Hello Reagan , have had similar surgery ( lower two thirds of left lung > removed 10 yrs ago ) to Maggie. Air was still bubbling thru, 2 weeks > after > surgery, and had a further op to resuture the part that was leaking > (have > been told that lung tissue is like cotton wool to sew - a mattress > style > stitch is used to get maximum hold on the tissue !!) > Can remember my feelings at the time when all didn't go to plan - very > disappointed, worried, & scared about what was to happen next...in the > event > I was in hosp. for approx 6 weeks. > You need to make sure Maggie doesn't leave hospital (how ever much > she's > busting to get home ! ) til the surgeon is absolutely sure there's no > further air leaks as any infection getting into the pleural (chest > ) > cavity from the lung, will cause a lot more problems and lung collapse > from > air / fluid build up (my situation afterwards) > Will praying for you guys ...... cheers Craig Thanks to everyone for the support. Craig, can you tell me more about the second surgery? Maggie is already in a lot of pain from the chest tubes and incision as is dreading another operation. What exactly did they do to you (go in through the same incision? add more sutures? etc.)? What was the experience like? Also, you mentioned problems afterward with lung collapse. Was this after they went back in to suture you up a second time? If so, does that mean that second operation wasn't successful, or do they just expect that lung collapse and air/fluid buildup will happen regardless of more surgery. We are starved for information, so the more you can tell us, the better. Thanks! - Reagan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2004 Report Share Posted May 5, 2004 On May 5, 2004, at 6:28 AM, Craig & Suzanne Carpinter wrote: > I was in hosp. for approx 6 weeks. > You need to make sure Maggie doesn't leave hospital (how ever much > she's > busting to get home ! ) til the surgeon is absolutely sure there's no > further air leaks as any infection getting into the pleural (chest > ) > cavity from the lung, will cause a lot more problems and lung collapse > from > air / fluid build up (my situation afterwards) > Will praying for you guys ...... cheers Craig Craig, One more question (sorry to keep bothering you). How have the last 10 years been for following the surgery... can you breathe easier than before? Did the infections clear up for extended periods? When you had the second operation, did you in effect have to " start over " on your recovery? Thanks Reagan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2004 Report Share Posted May 5, 2004 On May 5, 2004, at 6:28 AM, Craig & Suzanne Carpinter wrote: > I was in hosp. for approx 6 weeks. > You need to make sure Maggie doesn't leave hospital (how ever much > she's > busting to get home ! ) til the surgeon is absolutely sure there's no > further air leaks as any infection getting into the pleural (chest > ) > cavity from the lung, will cause a lot more problems and lung collapse > from > air / fluid build up (my situation afterwards) > Will praying for you guys ...... cheers Craig Craig, One more question (sorry to keep bothering you). How have the last 10 years been for following the surgery... can you breathe easier than before? Did the infections clear up for extended periods? When you had the second operation, did you in effect have to " start over " on your recovery? Thanks Reagan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 Reagan, the second surgery took place approx 3 weeks after the first op. I don't remember it being any worse, as the surgeon used the original cut thru the ribs (they stretch easier the 2nd time round...!!) and resutured the lung where leaking, plus a better pain relief (epidural) - but the chest drains don't help feelings of wellbeing though... Approx 3 weeks after that I got out with, I think, a reasonably functional left lung but that collapsed about 6 months later - attributed to infection/air leak with a further op to clean out/restitch the lung thru same cut(told surgeon to stick a zipper between the ribs !) Since then I have had various complications/infections like pseudomonas, aspergillus and continuing air leak, but late last year after various tests was found to have hyper IgE syndrome, an inherited immune deficiency,which plays a major part in all infections I get, and which is most likely why the original surgery wasn't as successful as should have been.... I have deteriorated over the 10 years since, being on antibiotics and steroids for the various recurrent infections, bronchiectasis creeping into the right lung and now on home oxygen. There have been times of being cough free and easy breathing - choice ! ( I still work as health permits me to) Having the 2nd op (apart from disappointment and worry) was no major drama as all the damage was done in the 1st op., so was probably better prepared for it physically with pain relief etc, and recovery didn't seem to be an issue - apart from the physiotherapist promising a bit of agony...! Don't take my case as being common experience - ( I would be probably be one of a small percentage for which it didn't work so well, others have no problems at all and improve afterwards - others in the bronchi group have that experience) Pray that Maggie's lung heals cleanly... Pain relief is a big thing - Maggie needs to make sure she's getting enough or recuperating will be sore work Staying informed and keeping active with exercises or rehabilitation group post surgery would be a bonus - others in this group will have advice to help also -all putting into the melting pot of experience. cheers Craig - say hi to Maggie and focus on life after hospital - it'll be great... Re: Maggie > On May 5, 2004, at 6:28 AM, Craig & Suzanne Carpinter wrote: > > > Hello Reagan , have had similar surgery ( lower two thirds of left lung > > removed 10 yrs ago ) to Maggie. Air was still bubbling thru, 2 weeks > > after > > surgery, and had a further op to resuture the part that was leaking > > (have > > been told that lung tissue is like cotton wool to sew - a mattress > > style > > stitch is used to get maximum hold on the tissue !!) > > Can remember my feelings at the time when all didn't go to plan - very > > disappointed, worried, & scared about what was to happen next...in the > > event > > I was in hosp. for approx 6 weeks. > > You need to make sure Maggie doesn't leave hospital (how ever much > > she's > > busting to get home ! ) til the surgeon is absolutely sure there's no > > further air leaks as any infection getting into the pleural (chest > > ) > > cavity from the lung, will cause a lot more problems and lung collapse > > from > > air / fluid build up (my situation afterwards) > > Will praying for you guys ...... cheers Craig > > Thanks to everyone for the support. > > Craig, can you tell me more about the second surgery? Maggie is > already in a lot of pain from the chest tubes and incision as is > dreading another operation. What exactly did they do to you (go in > through the same incision? add more sutures? etc.)? What was the > experience like? > > Also, you mentioned problems afterward with lung collapse. Was this > after they went back in to suture you up a second time? If so, does > that mean that second operation wasn't successful, or do they just > expect that lung collapse and air/fluid buildup will happen regardless > of more surgery. > > We are starved for information, so the more you can tell us, the better. > > Thanks! > > - Reagan > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 Reagan, the second surgery took place approx 3 weeks after the first op. I don't remember it being any worse, as the surgeon used the original cut thru the ribs (they stretch easier the 2nd time round...!!) and resutured the lung where leaking, plus a better pain relief (epidural) - but the chest drains don't help feelings of wellbeing though... Approx 3 weeks after that I got out with, I think, a reasonably functional left lung but that collapsed about 6 months later - attributed to infection/air leak with a further op to clean out/restitch the lung thru same cut(told surgeon to stick a zipper between the ribs !) Since then I have had various complications/infections like pseudomonas, aspergillus and continuing air leak, but late last year after various tests was found to have hyper IgE syndrome, an inherited immune deficiency,which plays a major part in all infections I get, and which is most likely why the original surgery wasn't as successful as should have been.... I have deteriorated over the 10 years since, being on antibiotics and steroids for the various recurrent infections, bronchiectasis creeping into the right lung and now on home oxygen. There have been times of being cough free and easy breathing - choice ! ( I still work as health permits me to) Having the 2nd op (apart from disappointment and worry) was no major drama as all the damage was done in the 1st op., so was probably better prepared for it physically with pain relief etc, and recovery didn't seem to be an issue - apart from the physiotherapist promising a bit of agony...! Don't take my case as being common experience - ( I would be probably be one of a small percentage for which it didn't work so well, others have no problems at all and improve afterwards - others in the bronchi group have that experience) Pray that Maggie's lung heals cleanly... Pain relief is a big thing - Maggie needs to make sure she's getting enough or recuperating will be sore work Staying informed and keeping active with exercises or rehabilitation group post surgery would be a bonus - others in this group will have advice to help also -all putting into the melting pot of experience. cheers Craig - say hi to Maggie and focus on life after hospital - it'll be great... Re: Maggie > On May 5, 2004, at 6:28 AM, Craig & Suzanne Carpinter wrote: > > > Hello Reagan , have had similar surgery ( lower two thirds of left lung > > removed 10 yrs ago ) to Maggie. Air was still bubbling thru, 2 weeks > > after > > surgery, and had a further op to resuture the part that was leaking > > (have > > been told that lung tissue is like cotton wool to sew - a mattress > > style > > stitch is used to get maximum hold on the tissue !!) > > Can remember my feelings at the time when all didn't go to plan - very > > disappointed, worried, & scared about what was to happen next...in the > > event > > I was in hosp. for approx 6 weeks. > > You need to make sure Maggie doesn't leave hospital (how ever much > > she's > > busting to get home ! ) til the surgeon is absolutely sure there's no > > further air leaks as any infection getting into the pleural (chest > > ) > > cavity from the lung, will cause a lot more problems and lung collapse > > from > > air / fluid build up (my situation afterwards) > > Will praying for you guys ...... cheers Craig > > Thanks to everyone for the support. > > Craig, can you tell me more about the second surgery? Maggie is > already in a lot of pain from the chest tubes and incision as is > dreading another operation. What exactly did they do to you (go in > through the same incision? add more sutures? etc.)? What was the > experience like? > > Also, you mentioned problems afterward with lung collapse. Was this > after they went back in to suture you up a second time? If so, does > that mean that second operation wasn't successful, or do they just > expect that lung collapse and air/fluid buildup will happen regardless > of more surgery. > > We are starved for information, so the more you can tell us, the better. > > Thanks! > > - Reagan > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2004 Report Share Posted May 7, 2004 > If you don’t mind posting the hospital’s address and Maggie’s room > number, I’d like to send a card (they don’t allow flowers in ICU). >  Please give her a hug from me—but not too hard—and let her know that > my prayers are with her. Sorry for the delay... She's at: Maggie , Room #3818 Christus Spohn Hospital Shoreline 600 St Corpus Christi, 78404 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2004 Report Share Posted May 30, 2004 reagan, thanks for the update on maggie......still hoping for better news....just like you are! gentle hugs to maggie from jennifer in canadaMaggie wrote: This guy is what's known as a Troll.He looks for groups and starts spewing hateful or disruptive emails ("trolling") just to cause a stir.Ignoring trollers and reporting them to the list owner is usually the best remedy. Don't ever bother responding to him.- ReaganPS: Maggie is *still* in the hospital (5 weeks since surgery) with a prolonged air leak. They recently found a fungus (coccidioidomycosis) and are treating it too, although I'm not sure if she picked that up in the hospital or has had it undetected for a long time.> This guy is not your average spammer though is he as he is actually > reading the mail too.> I know on the bereaved parents groups we have had some spam and some > horrendous suggetions etc. but I don't think any of them have actually > read the mail.> Makes it a bit spooky really.> Hugs>>>> Tina Hillier Mum to , 14 years old and possesor of an Extra > Special Chromosome. Rosie 12 ( who enjoys a life enhanced by the Joys > and Trial of CdLS) 7, A budding Artist and Singer, And > who is 5 years old and a lovely friend! Isle of Wight UK > http://uk.photos.yahoo.com/tdlhillier > mailto:tdlhillier@...>> www.cdlsrosie.homestead.com>> Yahoo! Messenger - Communicate instantly..."Ping" your friends today! > Download Messenger Now>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2004 Report Share Posted May 31, 2004 Hi Reagan, Sorry to hear that Maggie is still in hospital, my thoughts and prayers have been with her each day for recovery and healing. Please tell Maggie that we are thinking of her, and wishing her well. My thoughts are with you and your family, as you wait for Maggie to recover. I hope there is some good news soon. My love and best wishes to Maggie. Bunny PS: Maggie is *still* in the hospital (5 weeks since surgery) with a prolonged air leak. They recently found a fungus (coccidioidomycosis) and are treating it too, although I'm not sure if she picked that up in the hospital or has had it undetected for a long time. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 Hi Maggie, Thanks for your reply re Spiriva, and I hope it helps you, along with your other meds. Maggie, I'm so sorry that your operation didn't go as well as expected. I can understand your frustration, and my prayers will continue for you to heal and get well again soon. You probably get sick of people telling you to take it slowly and one day at a time, etc. but time really is the best healer. I know we need to have the patience of a saint with this disease!! I'm having a lousy time too with constant yukky infection in my lungs (grrr)! I haven't had the operation, but I'm sure you will feel better once the chest tubes are removed. Rehab sounds like a good idea, when you feel well enough. Stay positive, we're all here for you and praying for your recovery. Love Bunny -----Original Message-----From: Maggie Sent: Thursday, 17 June 2004 3:02 PMTo: bronchiectasis Subject: Re: Cheryl re SpirivaI was given Spiriva in the hospital and am continuing it at home. I'm not sure how it's working yet. Doc said to stop all other inhalers such as albuterol and combivent, but continue the Advair 3 times a day. Keep in mind this is just a fraction of the drugs I am on. 28 years old. Too many medications. I hope this new Spiriva does something for somebody. Doctors have already put me on a transplant list in Houston and San . My operation didn't go as well as expected. I'm a little down. Won't a transplant kill me before my time? Anyway, 2 months after surgery, I'm finally out of the hospital, but the chest tubes came home with me. One day at a time they tell me. It's been 2 months. I'm scared. One of the meds I can't live without now is Xanac and of course LorTab. I told doc I'll just go into rehab after all this. I have to stay sane somehow. I want these tubes out of me. I'm looking everywhere for God, but I just can't seem to find him now. I need him. I'm so scared. My mom got a pft today to see if she could be lung donor. Your mom is second best to your twin, but I'm terrified of more surgery. I felt better before this damn surgery! I hope everyone else is in better spirits.Maggie Quote Link to comment Share on other sites More sharing options...
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