Guest guest Posted February 17, 2011 Report Share Posted February 17, 2011 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! eSubject: DoctorsTo: bronchiectasis Date: Thursday, February 17, 2011, 4:02 PMHi 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 e - I was sad to read about your young son having bronchiectasis. It simply is not fair. Have you ever heard of the National Jewish Hospital for Respiratory diseases located in Denver? I know when I was there - there was a special division for children. It is the #1 respiratory hospital in the US. You may want to look at their website www.nationaljewish.org (I think that is it). It is a long way from Orlando. I know Mayo is EXCELLENT but it might be worth checking it out -National Jewish - at least you could call and visit with some of the specialists. It is a teaching hospital and they have the latest treatments, etc. If I can't get over this bad spell I am having, I plan to go back. I am anxious to start on the nebulizer and see if that will help me. Just finished my last tablet of Levaquin today and feeling good........so I went shopping. Going to a cocktail party tonight. We all know the feeling of doing things while we feel the best. Sharyn 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 Sharyn- Yes! I have heard the hosp in Denver. I always trust teaching hosps first too. I have not needed to look for further treatment for my little guy, until my ins company refused to pay for his medicine, but Mayo has given us options, so we will likely stay w/ them for now. OUr biggest problem is not the treatment plan, its United Health Care.Wonderful to hear that you are going to a party tonight! I hope you have a wonderful time! I am sitting in Trinidad right now, have to be here work for a few days. They are getting ready for Carnival. Its going to be something to see, I guess! Have a great time tonight!!! 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 Hester! I think I remember that you said that you're in S Africa (the brain is old, oxygen-deprived and sometimes feeble!). I don't know what a Specialist Medical Doctor is - this is not a term used in the US, where I live. Yes, a pulmonologist is best to treat bronchiectasis - even better is one who specializes in Cystic Fibrosis as the majority of bronchiectasis is in those patients. Those of use who don't have CF as well, are in the minority.d Most doctors these days are trained to avoid antibiotics as much as possible. This isn't always possible in bronchiectasis patients and that does not serve them well. If your health care system allows such, I would absolutely ask for a referral to a pulmonologist, preferably one connected with a med school if this is geographically feasible for you. Suzanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2011 Report Share Posted February 17, 2011 Hi e,No I am not staying in the USA. I am in South Africa at the South Coast. Thanks for all the advise. I won't know where I am without all this. One of you mentioned it as an anti-social disease and it is so true. I tend to pull myself back more and more and just stay in the comfort of my own home. All the bestSussie or HesterSent from my BlackBerry® wireless deviceSender: bronchiectasis Date: Thu, 17 Feb 2011 13:23:28 -0800 (PST)To: <bronchiectasis >ReplyTo: bronchiectasis Subject: 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 withit. 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 thisHypo 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! eSubject: DoctorsTo: bronchiectasis Date: Thursday, February 17, 2011, 4:02 PMHi 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 under Brit system (Aust, Africa ....?? ) a specialist means a doctor who has done further training in a 'specialist' field eg lungs. USA seem to refer to them as pulmonologists. UK (Canada?, Africa?, definitely Australia) is a Thoracic consultant (correct 'title') but generally, is just a specialist, rather than the GP (general practitioner) doc we see more regularly and about more general health issues.... does that help? joy (Aus) Quote Link to comment Share on other sites More sharing options...
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