Guest guest Posted February 17, 2011 Report Share Posted February 17, 2011 e, You mentioned that you were from Central Illinois--where? I am from Nashville, Illinois which is in South Central Illinois and about 70 miles east of St. Louis, MO. Two of our three children live in Chicago. My brother also lived there while undergoing rehab. from an injury in the military. We have lived in five Midwestern states before moving to Round Rock/ Austin, Texas about 28 years ago. I am 76 years old and was diagnosed with bronhiectasis when I was 65 although I think that I had it when I was being treated for allergies, asthma and sinusitis. I still have chronic sinusitis with pseudomonas colonization. Since 2001 I have been hospitalized eight times with pneumonia. The last five hospitalizations have been for pseudomonas pneumonia. In 2009 and 2010 I have been hospitalized every six months with pseudomonas pneumonia. It takes quite a while to recover from frequent bouts of pneumonia at my age. I have not been active in this group during this past year since I am now fighting cancer for the third time since 1989. I wish you the best in your search to obtain the medication that Sammy needs. Norma To: bronchiectasis Sent: Thu, February 17, 2011 3:23:28 PMSubject: Re: Doctors Sussie-I wonder if you have given thought to returning to Mayo Pulmonolgy Dept. You mentioned that you were diagnosed there. My son was @ his pediatrician just last week, he seems to be SO far behind Sammy's pulmonologists. We live in Orlando, Fl, unfortunately.I wonder if maybe you just see a Pulmonology specialist for a type of treatment ck-up. We can always see such a difference in how the non-specialist dr treats this disease vs. how the pulm specialists deal with it. I am so sorry that you have found it difficult to keep up with this disease, but being in this group has helped me help my little boy and his disease, SO much! I think you will find the same. Do you do any nebulizer treatments?Mayo just put my son on this Hypo tonic Saline. Not my 1st choice, but about $2200 per month cheaper than the 1st class treatment.We have now involved our U.S. Senator, so I can only hope and pray that his friends in high places can do more to force my ins company to pay for Sam's medicine, than what I could do or my union could do... And so we wait.... Best wishes to you! Where do you live in the MIdwest? I was raised in Central IL and my husband was raised in Southern Wisc. Sammy was born in 2002 in downtown Chicago. Chicago is the city I call home. I miss the Midwest. Do you find the harsh winters are making your respiratory issues that much more difficult? I think it doesn't really matter., actually. We return home often to visit family, and Sammy doesn't seem to react much differently to the cold air. In Nov we returned for about 10 days and Sammy seemed to do just fine w/ the cold. Just one (of many) case studies I have done!I wish you nothing but the best, all of this new information is quite possibly over-whelming at first. You will find that a lot of the the bloggers here are from Australia and New Zealand. They have been dealt some REAL bad weather issues of late, so we are all worried for them. Breathe easy and take care! e Subject: DoctorsTo: bronchiectasis Date: Thursday, February 17, 2011, 4:02 PM Hi All,I am treated by a Specialist Medical Doctor, do you think a Pulmonologist will have better advise? As you all know by now, this is quite an expensive disease. HesterSent from my BlackBerry® wireless device------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2011 Report Share Posted February 17, 2011 Hello Norma! I was wondering where you have been. I noticed that you haven't been submitting ideas lately. Your 3rd bout of cancer?? WOW. This must be exhausting for you. Is this is a recurring cancer of the same system? Does not seem fair. Do you go over to Houston for treatment? I know there are a great number of clinics/hospitals there in Houston. Hopefully you are receiving top-notch care, Norma. The cancer thing has effected every person I know in one way or another. I always say that, instead of paying these baseball, football and basketball players millions of dollars a day, how about contributing to the programs that count: the researchers trying to find a cure for all these diseases we suffer from. Won't happen, I know, but we can keep hopes high.So keep your hopes high and enjoy that spring air I know you guys are finally starting to get there in Central Texas. I am so sorry that you have all this going on in your life, sweetie. You have been missed here on this message board. Stay well and keep in touch... Kris Subject: DoctorsTo: bronchiectasis Date: Thursday, February 17, 2011, 4:02 PM Hi All,I am treated by a Specialist Medical Doctor, do you think a Pulmonologist will have better advise? As you all know by now, this is quite an expensive disease. HesterSent from my BlackBerry® wireless device------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2011 Report Share Posted February 17, 2011 Hi Norma, I've wondered how you were doing and why you hadn't been on our site for a while. I am so sad to hear you're fighting cancer again. You've been a winner all along, so I'll hold to this thought when I think of you. Keep in touch! Miss hearing your wise counsel. Kay DoctorsTo: bronchiectasis Date: Thursday, February 17, 2011, 4:02 PM Hi All,I am treated by a Specialist Medical Doctor, do you think a Pulmonologist will have better advise? As you all know by now, this is quite an expensive disease. HesterSent from my BlackBerry® wireless device------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2011 Report Share Posted February 18, 2011 Kay, I am scheduled for cyroablation (freezing) the tumor in my kidney. When tumors in the kidneys, liver and lungs are found early, interventional radiology is an option when surgery is not. It is about a 15-minute procedure which is done in a CT scanner. They may need to keep me in the hospital overnight for observation. Thanks for your concern. Norma To: bronchiectasis Sent: Thu, February 17, 2011 9:36:20 PMSubject: Re: Doctors (e) Hi Norma, I've wondered how you were doing and why you hadn't been on our site for a while. I am so sad to hear you're fighting cancer again. You've been a winner all along, so I'll hold to this thought when I think of you. Keep in touch! Miss hearing your wise counsel. Kay DoctorsTo: bronchiectasis Date: Thursday, February 17, 2011, 4:02 PM Hi All,I am treated by a Specialist Medical Doctor, do you think a Pulmonologist will have better advise? As you all know by now, this is quite an expensive disease. HesterSent from my BlackBerry® wireless device------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2011 Report Share Posted February 18, 2011 I'm so glad they found this early Norma! Was it an ultrasound that found it? Sounds like your doctors are on top of things. Cryoablation sounds better to me than surgery. I'll be thinking about you... God's speed. Kay DoctorsTo: bronchiectasis Date: Thursday, February 17, 2011, 4:02 PM Hi All,I am treated by a Specialist Medical Doctor, do you think a Pulmonologist will have better advise? As you all know by now, this is quite an expensive disease. HesterSent from my BlackBerry® wireless device------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2011 Report Share Posted February 19, 2011 Hi Norma, All ther very best and a speedy recovery to you. EILEEN Subject: DoctorsTo: bronchiectasis Date: Thursday, February 17, 2011, 4:02 PM Hi All,I am treated by a Specialist Medical Doctor, do you think a Pulmonologist will have better advise? As you all know by now, this is quite an expensive disease. HesterSent from my BlackBerry® wireless device------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2011 Report Share Posted February 19, 2011 Hi Eileen, Thanks for your good wishes. Norma To: bronchiectasis Sent: Sat, February 19, 2011 9:04:16 AMSubject: Re: Doctors (e) Hi Norma, All ther very best and a speedy recovery to you. EILEEN Subject: DoctorsTo: bronchiectasis Date: Thursday, February 17, 2011, 4:02 PM Hi All,I am treated by a Specialist Medical Doctor, do you think a Pulmonologist will have better advise? As you all know by now, this is quite an expensive disease. HesterSent from my BlackBerry® wireless device------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2011 Report Share Posted February 19, 2011 Kay, It was found while I was in the hospital for pseudomonas pneumonia last May. I told my doctor that I was having some problems with the food they served. I knew that I had a gallstone, but knew that was not the problem. I also knew that I had GERD. He ordered an abdominal scan, and that is how it was found. From the literature I have read, this is the most common way these early tumors are found. My pulmonologist's brother was my breast cancer surgeon when I had a double mastectomy in 1989. This was caught early so that I did not need chemo. or radiation. Thanks for your concern and support. Norma To: bronchiectasis Sent: Fri, February 18, 2011 7:04:57 PMSubject: Re: Doctors (e) I'm so glad they found this early Norma! Was it an ultrasound that found it? Sounds like your doctors are on top of things. Cryoablation sounds better to me than surgery. I'll be thinking about you... God's speed. Kay DoctorsTo: bronchiectasis Date: Thursday, February 17, 2011, 4:02 PM Hi All,I am treated by a Specialist Medical Doctor, do you think a Pulmonologist will have better advise? As you all know by now, this is quite an expensive disease. HesterSent from my BlackBerry® wireless device------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2011 Report Share Posted February 19, 2011 e, Thanks for your good wishes. Norma To: bronchiectasis Sent: Fri, February 18, 2011 6:55:29 PMSubject: Re: Doctors (e) Norma! I don't know if you got my last message, stating to you how sorry I am that you are going thru all of this, plus the bronchiectasis. I guess you are going into the hosp soon, or maybe you are already there... I hope you are receiving the kind of care we all know you are deserve. We look very fwd to hearing from you when you next feel up to it and may all the prayers we are sending make into your heart, and kidneys :-) e Subject: DoctorsTo: bronchiectasis Date: Thursday, February 17, 2011, 4:02 PM Hi All,I am treated by a Specialist Medical Doctor, do you think a Pulmonologist will have better advise? As you all know by now, this is quite an expensive disease. HesterSent from my BlackBerry® wireless device------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2011 Report Share Posted February 20, 2011 Kay, When I was in the hospital last May with pseudomonas pneumonia, I mentioned that my stomach hurt, and I was having difficulty eating most of the food. I told my pulmonologist about my acid reflux (GERD) and gallstones so he ordered the ultrasound. That is when they found a small tumor. My cyroablation procedure is scheduled for Feb. 24. I hope I don't have to stay overnight in the hospital as I may get a lung infection--too many germs in hospitals. Norma To: bronchiectasis Sent: Fri, February 18, 2011 7:04:57 PMSubject: Re: Doctors (e) I'm so glad they found this early Norma! Was it an ultrasound that found it? Sounds like your doctors are on top of things. Cryoablation sounds better to me than surgery. I'll be thinking about you... God's speed. Kay DoctorsTo: bronchiectasis Date: Thursday, February 17, 2011, 4:02 PM Hi All,I am treated by a Specialist Medical Doctor, do you think a Pulmonologist will have better advise? As you all know by now, this is quite an expensive disease. HesterSent from my BlackBerry® wireless device------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2011 Report Share Posted February 24, 2011 Hi Norma, I hope all went well with your surgery today. Cindi W To: bronchiectasis Sent: Sun, February 20, 2011 6:09:10 PMSubject: Re: Doctors (e) Kay, When I was in the hospital last May with pseudomonas pneumonia, I mentioned that my stomach hurt, and I was having difficulty eating most of the food. I told my pulmonologist about my acid reflux (GERD) and gallstones so he ordered the ultrasound. That is when they found a small tumor. My cyroablation procedure is scheduled for Feb. 24. I hope I don't have to stay overnight in the hospital as I may get a lung infection--too many germs in hospitals. Norma To: bronchiectasis Sent: Fri, February 18, 2011 7:04:57 PMSubject: Re: Doctors (e) I'm so glad they found this early Norma! Was it an ultrasound that found it? Sounds like your doctors are on top of things. Cryoablation sounds better to me than surgery. I'll be thinking about you... God's speed. Kay DoctorsTo: bronchiectasis Date: Thursday, February 17, 2011, 4:02 PM Hi All,I am treated by a Specialist Medical Doctor, do you think a Pulmonologist will have better advise? As you all know by now, this is quite an expensive disease. HesterSent from my BlackBerry® wireless device------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2011 Report Share Posted February 24, 2011 Hi Norma, This goes for me, too! Let us know how you're doing, and God Bless you. Kay DoctorsTo: bronchiectasis Date: Thursday, February 17, 2011, 4:02 PM Hi All,I am treated by a Specialist Medical Doctor, do you think a Pulmonologist will have better advise? As you all know by now, this is quite an expensive disease. HesterSent from my BlackBerry® wireless device------------------------------------ Quote Link to comment Share on other sites More sharing options...
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