Guest guest Posted April 22, 2008 Report Share Posted April 22, 2008 I think they were afraid to give to much, sure, but when she was awake and screaming at them NO EXCUSE. She didn't have any. I just can't imaging the pain and fear, then the MAD comes out when ya really are yourself again. GRRR is rightThe last Dr. visit I had she told me she is nervous about cataract surgery let alone any other. She said DON'T GET SICK.NO SURGERY for me. I'm done with that part of this journey. Must say I am relieved with that and a bit nervous about it at the same time. Oh well I am going to just keep on as long as God has something for me to do. Love and Prayers, PeggyIPF 2004, Florida"Worry looks around, Sorry looks back, Faith looks up." Joyce and AnesthesiaI'll tell you in my experience with the obvious mistakes in level andlength of sedation with all the horror what brought the memory back inmy mind a month or so later too. This was on my VATS. After, all thesuffering through the anesthesia wearing off, I looked at what theinsurance company paid for various services and saw the anesthesiologistgot paid almost double what the Thoracic Surgeon did. So, they get paidat the absolute top of the medical profession and this makes twoepisodes I've encountered, only one to the extent you describe and thenyou had to go through this. Now, I think of future procedures andhonestly I'm not nearly as scared of the risks of two much anesthesia asI am of the suffering of too little. I don't know what they can doduring the procedure but it sure seems like there should be a way ofmonitoring your levels and seeing when its not enough, even if theyfailed to get enough to start with. In my case there was no effort beingmade to be careful not to give too much. Many Nurse (MB) can shedlight on what they can or can't do midway and how they monitor if atall. It would at least seem like something similar to the probes usedduring a sleep study would work.> > Hi Group,> > I'm Home! They didn't kill me in the Big House, although they> injured me severely.> > They have starved me, I am black and blue from shoulder to> fingertips. Yes, they took blood from my fingers. I was in surgery on> three different days. So, they would not let me eat or drink after> midnight, then not do surgery until late in the day. Then bring some> slimy inedible left over.> > Good news! My pulmonary pressures dropped from 61 to 40 with the> Flolan. My Angioplasty and stent placement was successful. I now have> a Hickman Catheter buried in my chest. That surgery was horrific.> They were trying not to give me much anesthesia and I came fully> awake while they were jamming that apparatus through my neck. They> take it up into the jugular vein, then down over the collar bone.> That is where they were when I came to. That was worse pain than I> have ever endured and they just kept going in spite of my screaming.> My hands were secured or I would have been fighting my way out of> there. I jumped the doc later. He said it was the anesthesiologist's> fault, but I think they were both at fault. These guys should have> been auto mechanics. It was awful. I think I will go on Montel and> tell my story. It is over and I will try to put it behind me, but I> keep remembering the sounds and smell and I remember the warm blood> running down the back of my> > neck. Lordy, how do you forget that. Idiots!> > They did the stent, etc on Tue, the teeth extraction on Thursday> and the butchering job on Saturday. On Sunday, Shelby (my 14 year old> grandaughter) came and we just snuggled up on the hospital bed and> rested. We had such a good day. I was so dopey and she giggled allday.> > I was ever so ready to come home today. I just discovered that the> entire time that I was in the hospital, I didn't take my Prednisone> 20mg. I neglected to put it on my list. I know how dangerous it is to> just stop. This doc wants me off and I want off, so I will call in> the a.m. Maybe he will just let me stay off. That was stupid on my> part. There is just so much to keep up with.> > Well, I have some reading to do here. I have missed you guys. Be> back tomorrow.> >> > Hugs, Joyce D.> >> > Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension> 2008> > Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc)> Rejected for Transplant 2006> > .....I will not forget you. Behold, I have engraved you on the> palm of my hands. Isaiah 49: 15-16> >> >> >> >> >> > ---------------------------------> > Be a better friend, newshound, and know-it-all with Yahoo! Mobile.> Try it now.> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2008 Report Share Posted April 28, 2008 I forgot to change the subject line again.!!!!! Drat K Kennelly wrote: Remember the link that Z sent out not long ago for clinical studies across the US? Well, I found one for the U of C, and I called today the number that was there. By golly she called me back. Tomorrow I'm going to call up there and make an appointment. She said that there are several studies that are starting this summer. They will want to do a lot of tests to make sure that he was diagnosed correctly - believe me I would be tickled to death if he wasn't. She said he wouldn't qualify for one because he is already on prednisone and they are going to start one with prednisone this summer to put to rest whether it does anything at all for ipf. The docs up there don't think that it does. I told her that our doc doesn't want to take him off because he thinks it might be. I told her that his quality of life stinks and we think it is the prednisone. I'm pretty excited that maybe we might be able to be involved with a study. I'm not sure what I really want but at least we can maybe help someone else as they travel down this path. It might not even be too late for Don. We might be in on the fringes of a break through. I doubt it, but who knows. K IllinoisBruce Moreland <brucemorelandgmail> wrote: KI am awaiting all my results from the University of Chicago but I dostrongly recommend anyone who can make at least one trip to one of the13 IPF Centers of Excellence and it is one. At the least its a secondopinion from one of the most knowledgeable and at the best its someadditional insight. I don't yet know which of those my trip will turnout to be. However, I know their protocols even on something as simpleas a CT are specifically designed for PF.> I made it back here. I have been working on a kite festival thatwas last weekend here in Decatur. I spent so much time on that I did notwant to sit here and go thru mail on this site. Glad to hear Don isdoing well, how about You?? This map idea is a good one. How did Don doin rehab?>> Re: P>> If you come for it, and the weather is great let us know. Monday,Wednesday and Friday's are Don's rehab in the afternoon. He is notlooking forward to doing this but he knows it is necessary. It zappedhim for the weekend and he only rode the exercise bike for 15 minutes onFriday.> We had so much fun meeting Fay (which by the way he hasn't postedlately) it will be fun meeting you.>>>>>>>> K> Central Il> Hubby ipf- 2006> As for me and my house, we will serve the Lord> 14>> ---------------------------------> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Tryit now.>>>>>>> ---------------------------------> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Tryit now.>>>>> K> Central Il> Hubby ipf- 2006> As for me and my house, we will serve the Lord> 14>>> ---------------------------------> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Tryit now.> K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2008 Report Share Posted April 28, 2008 I'm glad you answered. Yes I did talk to and wow!!!!!! I so enjoyed our conversation. She told me why the fibrosis patients have coughs. Very clear and succinct. Let me tell you that neither Don or I like to drive in Chicago --- and I grew up around there. Now don't say to me, "aw it isn't that bad", because I know where you live and I've been down there. Plano ain't so bad but Dallas and the freeway nuh-uh!!!!!!! I'm not sure what we will do. We can stay at our niece and nephew's in Elgin and take the metro in, but not sure how we would handle the whole day with the O2. Are you in line for a study? I really didn't know about how to do this and the thoughts of Chicago were debilitating. I will call tomorrow and make the appointment. She said it would be the end of June before we could get an appointment, but that is ok too. It will take that long to gather stuff. Thanks Bruce. K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2008 Report Share Posted April 28, 2008 K Oxygen arrangements shouldn't be a problem. I don't know what he currently has or his provider but never let oxygen slow you down. I will be glad to help you with what you should insist on from his provider for a trip like this. As to the drive into the hospital, I wasn't looking forward to morning rush hour either. So, I stayed in Tinley and Elgin would work the same although not as close but I got an early morning start in to beat the traffic. Although I was scheduled to start at 9 or so, I arrived before 8 and checked in. It made the entire day easier and the traffic was tolerable. I may or may not be in line for the Revatio study. If I did it, I'd actually do the study at Tulane. > > I'm glad you answered. Yes I did talk to and wow!!!!!! I so enjoyed our conversation. She told me why the fibrosis patients have coughs. Very clear and succinct. > Let me tell you that neither Don or I like to drive in Chicago --- and I grew up around there. Now don't say to me, " aw it isn't that bad " , because I know where you live and I've been down there. Plano ain't so bad but Dallas and the freeway nuh-uh!!!!!!! I'm not sure what we will do. We can stay at our niece and nephew's in Elgin and take the metro in, but not sure how we would handle the whole day with the O2. > > Are you in line for a study? I really didn't know about how to do this and the thoughts of Chicago were debilitating. I will call tomorrow and make the appointment. She said it would be the end of June before we could get an appointment, but that is ok too. It will take that long to gather stuff. > > Thanks Bruce. > > > > > > > > K > Central Il > Hubby ipf- 2006 > As for me and my house, we will serve the Lord > 14 > > > --------------------------------- > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2008 Report Share Posted April 28, 2008 What is Revatio? She said that all the centers were hooked together. Now this is strange. When I called Jewish National in Denver, that gal said that he should be on prednisone because in 6 months he would have more of his lung gone and it is irreversable. This is what Mayo told us too. Who do you believe, because both Mayo and Denver are part of that top research, right? K IllinoisBruce Moreland wrote: KOxygen arrangements shouldn't be a problem. I don't know what hecurrently has or his provider but never let oxygen slow you down. I willbe glad to help you with what you should insist on from his provider fora trip like this.As to the drive into the hospital, I wasn't looking forward to morningrush hour either. So, I stayed in Tinley and Elgin would work the samealthough not as close but I got an early morning start in to beat thetraffic. Although I was scheduled to start at 9 or so, I arrived before8 and checked in. It made the entire day easier and the traffic wastolerable.I may or may not be in line for the Revatio study. If I did it, I'dactually do the study at Tulane.>> I'm glad you answered. Yes I did talk to and wow!!!!!! I soenjoyed our conversation. She told me why the fibrosis patients havecoughs. Very clear and succinct.> Let me tell you that neither Don or I like to drive in Chicago --- andI grew up around there. Now don't say to me, "aw it isn't that bad",because I know where you live and I've been down there. Plano ain't sobad but Dallas and the freeway nuh-uh!!!!!!! I'm not sure what we willdo. We can stay at our niece and nephew's in Elgin and take the metroin, but not sure how we would handle the whole day with the O2.>> Are you in line for a study? I really didn't know about how to do thisand the thoughts of Chicago were debilitating. I will call tomorrow andmake the appointment. She said it would be the end of June before wecould get an appointment, but that is ok too. It will take that long togather stuff.>> Thanks Bruce.>>>>>>>> K> Central Il> Hubby ipf- 2006> As for me and my house, we will serve the Lord> 14>>> ---------------------------------> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Tryit now.> K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2008 Report Share Posted May 1, 2008 Gwynnie.... You are a magic wand. And, in reality, if I choose, I'm right where I was before the information. If I choose different, could be better off but a gamble. But, I'll not rush into it. Hard to get too carried away on a possible unidentified autoimmune. > > Bruce, > I'm not happy with your news about possible autoimmune > disease, but I know you'll do your homework and ask all > the appropriate questions. I'd probably recommend a > second opinion in any case, but especially with all the > various health issues you've got going on. I wish I could > wave a magic wand and make it all better, and I hope > you will take extra good care of you on your travels. > > Hugs and blessings, > Gwynnie 57 Single-lung Transplant on 4-3-08 at > UTHSC San , TX > Quote Link to comment Share on other sites More sharing options...
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