Guest guest Posted July 27, 2009 Report Share Posted July 27, 2009 Doctor's Response to my request for referral to UWMC: "While I have already done the evaluation for connective tissue disease (blood work), and hypersensitivity pneumonitis (bronchoscopy with lavage), would be glad for you to be seen at the UW. ROBERT SANDBLOM, MD"----- Message ----- From: COLLINSWORTH,LISA D Sent: 7/22/2009 9:54 AM To: Office of ROBERT SANDBLOM, MDSubject: Evaulation at UWMC?Dear Dr. Sandblom,I have been doing some research, reading-up on IPF, and also found a very supportive and informative on-line support group of people living with Pulmonary Fibrosis /Interstitial Lung Disease. All of which leads me to feel that it would definitely be beneficial for me to be further evaluated at the University of Washington Medical Center. Most significant is that my brother was evaluated at UWMC and his evaluation results could be of great assistance to finding a more definitive cause/diagnosis for me. I’ve learned there are connective tissue diseases that can cause pulmonary fibrosis or hypersensitivity pneumonitis, and that younger people in the 40’s and early 50’s like my brother and me get PF secondary to other underlying causes. I’m just not willing (yet) to accept that it's just IPF. I need to know more so I can be treated as accurately as is possible. I respect your advice, so please tell me what you think? Thanks, worth C_53_IPF_5/09Washington-the-Evergreen-state Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2009 Report Share Posted July 27, 2009 i did it again, I'm sorry it's the drugs:) Another message sent in duplicate...SORRY!... > > > > Doctor's Response to my request for referral to UWMC: > " While I have already done the evaluation for connective tissue > disease (blood work), and hypersensitivity pneumonitis (bronchoscopy > with lavage), would be glad for you to be seen at the UW. ROBERT > SANDBLOM, MD " > > ----- Message ----- > From: COLLINSWORTH,LISA D > Sent: 7/22/2009 9:54 AM > To: Office of ROBERT SANDBLOM, MD > Subject: Evaulation at UWMC? > Dear Dr. Sandblom, > I > have been doing some research, reading-up on IPF, and also found a very > supportive and informative on-line support group of people living with > Pulmonary Fibrosis /Interstitial Lung Disease. All of which leads me to > feel that it would definitely be beneficial for me to be further > evaluated at the University of Washington Medical Center. Most > significant is that my brother was evaluated at UWMC and his evaluation > results could be of great assistance to finding a more definitive > cause/diagnosis for me. I’ve learned there are connective > tissue diseases that can cause pulmonary fibrosis or hypersensitivity > pneumonitis, and that younger people in the 40’s and early 50’s like my > brother and me get PF secondary to other underlying causes. > I’m just not willing (yet) to accept that it's just IPF. I need to know more so I can be treated as accurately as is possible. > I respect your advice, so please tell me what you think? Thanks, worth > C_53_IPF_5/09 > Washington-the-Evergreen-state > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2009 Report Share Posted July 27, 2009 , I'm glad your doctor raised no objections to your being seen at UWMC. I realize he feels he's done all the relevent tests but believe me the doctors at UWMC will be far more thorough than you could have imagined. There will be bloodwork and tests you've not had done and they will take a history that will make you feelas though you've documented every moment of your life. From the earlier message it seems as though your doctor is unconvinced as to the need for an oximeter. I also realize your insurance plan doesn't "provide" one. You can purchase an FDA approved oximeter for as little as $65. It's a small amount of money to invest in your own safety. The vast majority of us have been told repeatedly not to allow our sats fall below 90 for any length of time. Dr. Pellicone Medical Director of Pulmonary Rehab at Helen Hospital (a rehabilitation hospital in NY) told me flat out. "When your O2 sats are below 90 for more than 2 or 3 minutes cells in your body start to die. Brain cells, heart cells, liver cells, kidney cells. Oxygen deprivation damages your body." ' Small amounts of damage over a long period of time add up, cause things like pulmonary hypertension and shorten our lives. Part of living well with pulmonary fibrosis is keeping our sats above 90 so that our bodies stay as healthy as possible for as long as possible. Most of us have been told similar things by doctors at university medical centers across the country. That's not to say you can't find doctors who disagree. Personally I'm more comfortable going with the advice and information of someone who deals with pulmonary fibrosis all the time as opposed to a pulmo in community practise who sees few patients with pf. You have to make your decisions based on what you are comfortable with. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breath Support <Breathe-Support >Sent: Monday, July 27, 2009 8:17:41 PMSubject: Referral to UWMC Doctor's Response to my request for referral to UWMC: "While I have already done the evaluation for connective tissue disease (blood work), and hypersensitivity pneumonitis (bronchoscopy with lavage), would be glad for you to be seen at the UW. ROBERT SANDBLOM, MD"----- Message -----From: COLLINSWORTH, LISA DSent: 7/22/2009 9:54 AMTo: Office of ROBERT SANDBLOM, MDSubject: Evaulation at UWMC?Dear Dr. Sandblom,I have been doing some research, reading-up on IPF, and also found a very supportive and informative on-line support group of people living with Pulmonary Fibrosis /Interstitial Lung Disease. All of which leads me to feel that it would definitely be beneficial for me to be further evaluated at the University of Washington Medical Center. Most significant is that my brother was evaluated at UWMC and his evaluation results could be of great assistance to finding a more definitive cause/diagnosis for me. I’ve learned there are connective tissue diseases that can cause pulmonary fibrosis or hypersensitivity pneumonitis, and that younger people in the 40’s and early 50’s like my brother and me get PF secondary to other underlying causes. I’m just not willing (yet) to accept that it's just IPF. I need to know more so I can be treated as accurately as is possible. I respect your advice, so please tell me what you think? Thanks, worth C_53_IPF_5/09Washington-the- Evergreen- state Quote Link to comment Share on other sites More sharing options...
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