Guest guest Posted April 30, 1999 Report Share Posted April 30, 1999 I had a double cancer operation last year, pancreas and renal - followed by chemo and radiation. Supposedly they got it all at the time - but in January, I re-entered chemo because they found 3 spots on my liver - too small to biopsy - The CT scan is to see if the chemo is working or not - I am diabetic from the loss of most of my pancreas and for a time was having a dickens of a time adjusting my insulin level and diet along with the chemo. In 1995, I had an angiogram which showed a 90% block which was corrected with two angioplasties and some complications - my artery burst at the juncture of the main when they tried to correct the re-block (80%) which occurred within 24 hours. So, I have had stress tests galore - this was my first stress test though in two years because I was too weak to have one last year after the operation - in Port Orange, FL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 1999 Report Share Posted May 1, 1999 >> Tuesday went for my stress test, CT >scan and chest x-ray -still waiting on the results of the CT and chest x-ray >> in Port Orange, FL > > Best wishes and tons of prayer for good reports, ! Winky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 1999 Report Share Posted May 1, 1999 --DAWNW@... WHAT ARE ALL THESE TEST FOR NOTHING TO SERIOUS I HOPE. WHAT ARE THEY LOOKING FOR IF YOU DO NOT MIND ME ASKING. HOPE EVERTHING COMES BACK FINE. LET US KNOW HOW YOU ARE DOING. I WILL KEEP YOU IN MY THOUGHTS. >From: wtperson@... > >>> Tuesday went for my stress test, CT >>scan and chest x-ray -still waiting on the results of the CT and chest x-ray >>> in Port Orange, FL >> >> >Best wishes and tons of prayer for good reports, ! >Winky > >------------------------------------------------------------------------ >G-Shock Sports Watch ** NOW JUST $59.95 ** SHIPPING INCLUDED >Built Tough, Built Cool! Full of Features! Electro Luminescent, Alarm >1/100th of Second Stopwatch, 12/24 Hour, Great for Sports, and more! > http://www.onelist.com/ad/shoptheglobe11 > Move into your FREE Internet apartment! http://www.myspaceonline.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 1999 Report Share Posted May 1, 1999 Dear : << I had a double cancer operation last year, pancreas and renal - followed by chemo and radiation. >> I am a newbie and although I don't know you I am pleased to meet you now. You have really had more than your share of suffering and my prayers and thoughts are with you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2006 Report Share Posted March 5, 2006 As for the cattle prod, I was issued one by my new doc, weren't you? I get to use it on any unempathetic person I encounter, especially those snits who work in medical settings. It's come in real handy since my dx. As for nose bleeds, try Ponaris. It's a nasty nose drop (not really too bad), blended oils, smells like pine trees. OTC & fairly cheap. I use it 2x daily along with my prescription Flonase. It doesn't pay to stay away from this board so long. It's taken me all evening to catch up on posts. But I still work full-time & don't take time to sign on daily. Many of you probably either don't remember me or don't know me at all. I'm Bonnie from SC & was dx'ed with IPF in 1.06 & severly abused by the medical profession until I got a grip. I've been to my 2nd pulmonologist who was much kinder & , I think, more knowledgable than the 1st. The 1st wanted to follow " conventional treatment " If you remember, in olden days of yore, conventional treatment for various ailments included the administration of heavy metals, bleeding & leaching (now making a comeback)and the like. Today's conventional treatment for PF is bronchoscopy, followed by lung bx, followed by high dose steriods & immosuppressant drugs. No offense to those of you who have/are taking this course. You are the contributors to the beginning of the knowledge base. In other words, thru your contributions, we now know that there is no research proof that these procedures and treatments are totally necessary, nor beneficial. The bronchoscopy was helpful to me in that I know that I have no active inflammation. My new doc says that the lung bx is not necessary; all it does is contribute to epidemiology and research (as to possible causes of PF) but not to my treatment or longevity. He also concurs that steriods & immosuppressants are not effective, thus probably not worth the side affects. He had me walk with an oximeter which confirmed that I do not need o2 during the day for routine (I do need it at night, however, as I desat to 86 or lower) I begin pulmonary rehab this week and am moment by moment concentrating on abdominal breathing. I plan to take up yoga. This doc was kind enough to introduce the idea that my disease may no longer be progressing. In other words, perhaps I'm still dying of PF but maybe not; if not that though, then certainly of something! While my stats (35% diffusion rate; 50 % lung capacity) won't get any better, perhaps my symptoms will. But I'm empowered in trying self-help & I'm not waspending my money on drugs & surgeries that do not benefit me. Health food store, here I come, but I'm not sure about the raw meat treatment. I am also seeing a specialist in ton, SC ( Sahn) for consult & to see if I qualify for drug trials. If that doesn't pan out, I may try Mayo in Fla This is one really scary disease and the thoughts of dying by slow suffication are almost unbearable. My approach to this, since I really can't change the ending, is to not let it interfer with the traveling. I franky don't allow myself to think about it all that much. I'm sure that I will soon no longer be able to work & that o2 will become a permanent fixture in my life. At that point, maybe I'll start a support group locally. Some of you have such great attitudes! I'm in process of writing my own ending, as much as anyone can, by use of a very explicit living will and engaging docs who share my beliefs and values on end of life care. Beyond that, I plan to exercise as much control over my life and destiny as possible but one day at a time. Peace,love and keep the faith! bf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2006 Report Share Posted March 6, 2006 I don't know why, but I'm awfully chatty tonight! At least when I talk this way, I don't get out of breath! ha ha....Bonnie - you sound like you have a good attitude....I have heard myself say the same things you did...it is not easy to deal with the medical system. Being sick should be enough...my primary doctor is the only one I trust...he is the only one who cares enough to know me and to listen when I need to talk. Most doctors don't have a clue as to how to take care of someone with a chronic illness....they are trained to recognise a problem and fix it,then move on. So, don't give up....get the answers and help you need. And if you need a shoulder to cry on or a pep talk, I'm here for you! --Diane Quinlan dianequinlan@... This is one really scary disease and the thoughts of dying by slow suffication are almost unbearable. My approach to this, since I really can't change the ending, is to not let it interfer with the traveling. I franky don't allow myself to think about it all that much. I'm sure that I will soon no longer be able to work & that o2 will become a permanent fixture in my life. At that point, maybe I'll start a support group locally. Some of you have such great attitudes! I'm in process of writing my own ending, as much as anyone can, by use of a very explicit living will and engaging docs who share my beliefs and values on end of life care. Beyond that, I plan to exercise as much control over my life and destiny as possible but one day at a time.Peace,love and keep the faith! bf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2006 Report Share Posted June 2, 2006 , What a creep your Dr is not to have acted on your x-ray.. I think I would do something about him. I hope you get into Vanderbilt real soon. Let us know. we'll be praying.. Peggy 9/04 ipf linda arnoldPeggy 09/04 ipf good morning, I finally heard back from Vanderbilt this morning.My dr finally sent them my records and they said I have had this mass in the rt lung since Feb. Dr only told me about it first of May. Boy am I mad.Vanderbilt to call back with an appointment to do biopsy, I told them did not want dr to do rather I come to them.I feel dr only watching to see how long to die without any treatment. jWill keep you updated ipf 7/05 __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2006 Report Share Posted June 2, 2006 , Go to Vanderbilt. It is one of the top lung hospitals in the country. This is waaaaay to serious to leave to local docs. How far away are you. My insurance is paying for my trip to St. Louis. Check it out! I know you are scared right now, and rightly so. Please remember that we all are pulling for you! You will be in my heart as you make this decision. Hugs....and many prayers, Joyce PF 1997>> good morning,> I finally heard back from Vanderbilt this morning.My dr finally sent them my records and they said I have had this mass in the rt lung since Feb. Dr only told me about it first of May. Boy am I mad.Vanderbilt to call back with an appointment to do biopsy, I told them did not want dr to do rather I come to them.I feel dr only watching to see how long to die without any treatment. jWill keep you updated> > ipf 7/05> > __________________________________________________> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2006 Report Share Posted June 2, 2006 , About the time I fired off the post, I remembered. You are in Lebanon, correct? Just a short drive up the road to Nashville. Joyce PF 1997>> , What a creep your Dr is not to have acted on your x-ray.. I think I> would do something about him.> I hope you get into Vanderbilt real soon. Let us know. we'll be praying..> Peggy 9/04 ipf> > > linda arnoldPeggy 09/04 ipf> > good morning,> > I finally heard back from Vanderbilt this morning.My dr finally sent them my> records and they said I have had this mass in the rt lung since Feb. Dr only> told me about it first of May. Boy am I mad.Vanderbilt to call back with an> appointment to do biopsy, I told them did not want dr to do rather I come to> them.I feel dr only watching to see how long to die without any treatment.> jWill keep you updated> > > > ipf 7/05> __________________________________________________> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2006 Report Share Posted June 2, 2006 .... could you send me info on Vanderbilt ... I MIGHT need it. Phred ---- Original Message ---- From: joycedalton29@... To: Breathe-Support Subject: RE: Re: Update Date: Fri, 02 Jun 2006 22:11:50 -0000 > >, > >Go to Vanderbilt. It is one of the top lung hospitals in the >country. >This is waaaaay to serious to leave to local docs. How far away are >you. My insurance is paying for my trip to St. Louis. Check it out! > I >know you are scared right now, and rightly so. Please remember that >we >all are pulling for you! You will be in my heart as you make this >decision. > >Hugs....and many prayers, > >Joyce PF 1997 > >> >> good morning, >> I finally heard back from Vanderbilt this morning.My dr finally >sent >them my records and they said I have had this mass in the rt lung >since >Feb. Dr only told me about it first of May. Boy am I mad.Vanderbilt >to >call back with an appointment to do biopsy, I told them did not want >dr >to do rather I come to them.I feel dr only watching to see how long >to >die without any treatment. jWill keep you updated >> >> ipf 7/05 >> >> __________________________________________________ >> Quote Link to comment Share on other sites More sharing options...
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