Guest guest Posted January 24, 2010 Report Share Posted January 24, 2010 An analogy to this would be flying or piloting a ship. In either case the Captain or pilot is the final person who can say " no, we don't go. " Air traffic or the coast guard and other pilots and the company and everyone else might have said things look ok to this point but the one actually doing it has a final say. So, in transplants, the team harvesting the organs might say they look good, others might say they appear ok, although maybe not perfect. But, ultimately the surgeon about to transplant them to you has to be comfortable. He's the one there and most intimately involved and connected and he's the one you did entrust things to. So, he's the one who makes the final call to protect your safety. I think in most cases he also considers factors such as any conversations you might have had as to perfect or imperfect matches and your status and how that plays into knowing that if he does say no, you're still likely to get a transplant at a later date. If he deemed the patient to be near death and not likely to survive long enough to get more lungs then he might be less conservative than when he knows another chance is likely. > > > > > > From: patrickkathleen patrickkathleen@ > > Subject: Thank You > > To: Breathe-Support > > Date: Sunday, January 24, 2010, 11:37 AM > > > > > > Â > > > > > > > > Just a note to thank everyone for their warm messages.... ........last Wednesday > > was a long day for us. I was in the hospital f11 hours thinking everything was a > > go for TX and 10 minutes before I was to go into the OR....everyone else was in > > there already, the surgeon took a last look at the lung and said no. I know in > > my heart that when it is right, it will happen and my faith is even stronger tha > > n it was before Wednesday. > > > > I have learned some more things and have some questions. As they were getting > > all of the meds ready right around 9:15pm, the charge nurse said that there was > > 1 more drug to give me before surgery started, but because of the high cost of > > the drug, it would be hand carried to the OR and that the surgeon would have to > > sign for it......any ideas anyone? > > > > Another thing I learned and was a little taken aback by, though in retrospect, > > probably should not have been., In all of the time, I have been reading, > > talking..and learning about TX, I have never read or heard anyone mention being > > on a by-pass machine. I was just very surprised by it. > > > > LAst, but not least, I have written before that the one thing most on my mind is > > being on the vent........ ......... I am really scared of this idea. Shands says > > they keep you lightly sedated, but want you to be awake and aware of what is > > going on. I know I need to get past this, but it is hard. > > Take care, hope you all are having a good day, > > > > KAthy...FL > > PF....4/07 > > Wtg for TX call > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2010 Report Share Posted January 24, 2010 Kathy, I have no idea what drug it was that your physician would have to sign for in the OR. Clearly it's something that's so expensive that they only want to have to use it deliberately. As opposed to using it and then cancelling the surgery and wasting the dose of whatever it is. As for the bypass....it makes sense if you think about it. They need something to take over the function of your heart and lungs while they are operating. It allows for a more or less bloodless operating field and that means you lose less blood and that means you recover faster. It's something that makes sense when we think about it but most of us just don't think about this, that thorougly. The vent.... well it's not pleasant but it is necessary. And it's really just a step along the way. It's part of the process and you will get through it. It's likely you won't be vented for very long, few people are vented for more than a few hours to a day or so, you may not even remember much of it. I was vented for two days post-biopsy. I don't remember alot of it. Mostly I remember was the weaning process and the T-tube trials and my sister cheerleading me on so that I could get off the blasted thing. I hated it but I'm glad that kind of equipment is available. Without it these surgeries that save and extend our lives would not be able to be done. Maybe that's a good way to look at it. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Sun, January 24, 2010 12:37:21 PMSubject: Thank You Just a note to thank everyone for their warm messages.... .......last Wednesdaywas a long day for us. I was in the hospital f11 hours thinking everything was ago for TX and 10 minutes before I was to go into the OR....everyone else was inthere already, the surgeon took a last look at the lung and said no. I know inmy heart that when it is right, it will happen and my faith is even stronger than it was before Wednesday.I have learned some more things and have some questions. As they were gettingall of the meds ready right around 9:15pm, the charge nurse said that there was1 more drug to give me before surgery started, but because of the high cost ofthe drug, it would be hand carried to the OR and that the surgeon would have tosign for it......any ideas anyone?Another thing I learned and was a little taken aback by, though in retrospect,probably should not have been., In all of the time, I have been reading,talking..and learning about TX, I have never read or heard anyone mention beingon a by-pass machine. I was just very surprised by it.LAst, but not least, I have written before that the one thing most on my mind isbeing on the vent........ ......... I am really scared of this idea. Shands saysthey keep you lightly sedated, but want you to be awake and aware of what isgoing on. I know I need to get past this, but it is hard.Take care, hope you all are having a good day,KAthy...FLPF....4/07Wtg for TX call Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2010 Report Share Posted January 24, 2010 Kathy, Being on the vent is something that you won't remember. Being lightly sedated is good. I know you will be kept comfortable. I am excited that soon you will have a lung. I am glad to hear how cautious your surgeons and doctors are about TX. I just wanted to share this with you because I have been on the vent. But I was way more sedated than you will be. Toodles Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl> > > > > > From: patrickkathleen patrickkathleen@> > Subject: Thank You> > To: Breathe-Support > > Date: Sunday, January 24, 2010, 11:37 AM> > > > > > Â > > > > > > > > Just a note to thank everyone for their warm messages.... .......last Wednesday> > was a long day for us. I was in the hospital f11 hours thinking everything was a> > go for TX and 10 minutes before I was to go into the OR....everyone else was in> > there already, the surgeon took a last look at the lung and said no. I know in> > my heart that when it is right, it will happen and my faith is even stronger tha> > n it was before Wednesday.> > > > I have learned some more things and have some questions. As they were getting> > all of the meds ready right around 9:15pm, the charge nurse said that there was> > 1 more drug to give me before surgery started, but because of the high cost of> > the drug, it would be hand carried to the OR and that the surgeon would have to> > sign for it......any ideas anyone?> > > > Another thing I learned and was a little taken aback by, though in retrospect,> > probably should not have been., In all of the time, I have been reading,> > talking..and learning about TX, I have never read or heard anyone mention being> > on a by-pass machine. I was just very surprised by it.> > > > LAst, but not least, I have written before that the one thing most on my mind is> > being on the vent........ ......... I am really scared of this idea. Shands says> > they keep you lightly sedated, but want you to be awake and aware of what is> > going on. I know I need to get past this, but it is hard.> > Take care, hope you all are having a good day,> > > > KAthy...FL> > PF....4/07> > Wtg for TX call> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2010 Report Share Posted January 24, 2010 yes better to stop the surgery than to receive a bad lung Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Thank YouTo: Breathe-Support Date: Sunday, January 24, 2010, 1:05 PM NO scaring - please do not be.......... .....I am doing ok with it.......... ........and all will be well. Thbey stopped because I was told they do many, many checks and tests on the lung to make sure it is satisfactory and they do one last final check before surgery starts (which I am glad they do)........it was at this last check, that they decided to call it off. Would much rather have them do that than proceed.TGake care,KAthy...Fl> > > From: patrickkathleen <patrickkathleen@ ...>> Subject: Thank You> To: Breathe-Support@ yahoogroups. com> Date: Sunday, January 24, 2010, 11:37 AM> > > Â > > > > Just a note to thank everyone for their warm messages.... .......last Wednesday> was a long day for us. I was in the hospital f11 hours thinking everything was a> go for TX and 10 minutes before I was to go into the OR....everyone else was in> there already, the surgeon took a last look at the lung and said no. I know in> my heart that when it is right, it will happen and my faith is even stronger tha> n it was before Wednesday.> > I have learned some more things and have some questions. As they were getting> all of the meds ready right around 9:15pm, the charge nurse said that there was> 1 more drug to give me before surgery started, but because of the high cost of> the drug, it would be hand carried to the OR and that the surgeon would have to> sign for it......any ideas anyone?> > Another thing I learned and was a little taken aback by, though in retrospect,> probably should not have been., In all of the time, I have been reading,> talking..and learning about TX, I have never read or heard anyone mention being> on a by-pass machine. I was just very surprised by it.> > LAst, but not least, I have written before that the one thing most on my mind is> being on the vent........ ......... I am really scared of this idea. Shands says> they keep you lightly sedated, but want you to be awake and aware of what is> going on. I know I need to get past this, but it is hard.> Take care, hope you all are having a good day,> > KAthy...FL> PF....4/07> Wtg for TX call> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2010 Report Share Posted January 24, 2010 WOW what a Roller Coaster Ride that was...be thankful that the Surgeon had the GUTS to pull out in spite of everything being lined up ready to go! Dress Rehearsal No 1...now you can get those questions answered & be even more emotionally, mentally prepared for the reality of what you will experience. All the very Best ...... in Oz>> Just a note to thank everyone for their warm messages...........last Wednesday> was a long day for us. I was in the hospital f11 hours thinking everything was a> go for TX and 10 minutes before I was to go into the OR....everyone else was in> there already, the surgeon took a last look at the lung and said no. I know in> my heart that when it is right, it will happen and my faith is even stronger tha> n it was before Wednesday.> > I have learned some more things and have some questions. As they were getting> all of the meds ready right around 9:15pm, the charge nurse said that there was> 1 more drug to give me before surgery started, but because of the high cost of> the drug, it would be hand carried to the OR and that the surgeon would have to> sign for it......any ideas anyone?> > Another thing I learned and was a little taken aback by, though in retrospect,> probably should not have been., In all of the time, I have been reading,> talking..and learning about TX, I have never read or heard anyone mention being> on a by-pass machine. I was just very surprised by it.> > LAst, but not least, I have written before that the one thing most on my mind is> being on the vent.................I am really scared of this idea. Shands says> they keep you lightly sedated, but want you to be awake and aware of what is> going on. I know I need to get past this, but it is hard.> Take care, hope you all are having a good day,> > KAthy...FL> PF....4/07> Wtg for TX call> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2010 Report Share Posted January 24, 2010 Gio, The dress rehearsal isn't for wimps. BUT All days aren't bad. As you all can see I have some days that I feel and almost act 30 and I thoroughly enjoy myself.The rough days are shallow breathing and coughing. I get in my bed and read when I am feeling weak but most of the time I feel really good. I do think it is a frame of mind thing almost as much as the 02 problems. I made up my mind a long time ago to stay as positive as possible. I do have my times but few and far between. The best thing I can tell everyone is to dig deep within and find that calm peaceful place and rest there for a while. My place is in prayer and meditation on the wonders of God and all he has done for me in this life. It can help I know. Anyhow I do get very despondent when I know some of us are suffering or scared and afraid of the future. I want so badly to help in some way.You always bring out the smiles. Thank You Aussie.. ;)I am just so very sorry you have all these new found problems. Take heart dear one we are here for you. Love & PrayersPeggyIPF, 2004 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2010 Report Share Posted January 24, 2010 Peggy Some days when you almost act 30? Did you mean 30 or 13 out driving your hoveround like a crazy woman and wrecking and not waiting for help....lol. Yes you are of incredibly good humor and thats the only way to be. We can't change the disease but we can control our attitude. I know just by reading what you write here how many good days you have. I know they all aren't and I know good is relative. But you do enjoy your life and family and friends. > > Gio, The dress rehearsal isn't for wimps. BUT All days aren't bad. As you all can see I have some days that I feel and almost act 30 and I thoroughly enjoy myself. > The rough days are shallow breathing and coughing. I get in my bed and read when I am feeling weak but most of the time I feel really good. I do think it is a frame of mind thing almost as much as the 02 problems. I made up my mind a long time ago to stay as positive as possible. I do have my times but few and far between. > The best thing I can tell everyone is to dig deep within and find that calm peaceful place and rest there for a while. My place is in prayer and meditation on the wonders of God and all he has done for me in this life. It can help I know. > Anyhow I do get very despondent when I know some of us are suffering or scared and afraid of the future. I want so badly to help in some way. > You always bring out the smiles. Thank You Aussie.. > > I am just so very sorry you have all these new found problems. Take heart dear one we are here for you. > > > > Love & Prayers > Peggy > IPF, 2004 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2010 Report Share Posted January 24, 2010 To live well with a chronic illness is largely a mind game… “The only true disability is a bad attitude.†Hamilton C_53_Familial IPF_5/09, Washington HOPE doesn't disappoint! To: Breathe-Support@...Sent: Sun, January 24, 2010 7:07:16 PMSubject: Re: Thank You PeggySome days when you almost act 30? Did you mean 30 or 13 out driving yourhoveround like a crazy woman and wrecking and not waiting forhelp....lol. Yes you are of incredibly good humor and thats the only wayto be. We can't change the disease but we can control our attitude. Iknow just by reading what you write here how many good days you have. Iknow they all aren't and I know good is relative. But you do enjoy yourlife and family and friends.>> Gio, The dress rehearsal isn't for wimps. BUT All days aren't bad. Asyou all can see I have some days that I feel and almost act 30 and Ithoroughly enjoy myself.> The rough days are shallow breathing and coughing. I get in my bed andread when I am feeling weak but most of the time I feel really good. Ido think it is a frame of mind thing almost as much as the 02 problems.I made up my mind a long time ago to stay as positive as possible. I dohave my times but few and far between.> The best thing I can tell everyone is to dig deep within and find thatcalm peaceful place and rest there for a while. My place is in prayerand meditation on the wonders of God and all he has done for me in thislife. It can help I know.> Anyhow I do get very despondent when I know some of us are sufferingor scared and afraid of the future. I want so badly to help in some way.> You always bring out the smiles. Thank You Aussie.. >> I am just so very sorry you have all these new found problems. Takeheart dear one we are here for you.>>>> Love & Prayers> Peggy> IPF, 2004> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2010 Report Share Posted January 25, 2010 Hey Beth,'what on earth is a T tube trial??/ What a weird name for something! Kathy....Fl Pf.....4/07 Wtg for TX call > > Kathy, > I have no idea what drug it was that your physician would have to sign for in the OR. Clearly it's something that's so expensive that they only want to have to use it deliberately. As opposed to using it and then cancelling the surgery and wasting the dose of whatever it is. > > As for the bypass....it makes sense if you think about it. They need something to take over the function of your heart and lungs while they are operating. It allows for a more or less bloodless operating field and that means you lose less blood and that means you recover faster. It's something that makes sense when we think about it but most of us just don't think about this, that thorougly. > > The vent.... well it's not pleasant but it is necessary. And it's really just a step along the way. It's part of the process and you will get through it. It's likely you won't be vented for very long, few people are vented for more than a few hours to a day or so, you may not even remember much of it. > I was vented for two days post-biopsy. I don't remember alot of it. Mostly I remember was the weaning process and the T-tube trials and my sister cheerleading me on so that I could get off the blasted thing. I hated it but I'm glad that kind of equipment is available. Without it these surgeries that save and extend our lives would not be able to be done. Maybe that's a good way to look at it. >  > Beth > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 >  >  > > > > > ________________________________ > > To: Breathe-Support > Sent: Sun, January 24, 2010 12:37:21 PM > Subject: Thank You > >  > Just a note to thank everyone for their warm messages.... .......last Wednesday > was a long day for us. I was in the hospital f11 hours thinking everything was a > go for TX and 10 minutes before I was to go into the OR....everyone else was in > there already, the surgeon took a last look at the lung and said no. I know in > my heart that when it is right, it will happen and my faith is even stronger tha > n it was before Wednesday. > > I have learned some more things and have some questions. As they were getting > all of the meds ready right around 9:15pm, the charge nurse said that there was > 1 more drug to give me before surgery started, but because of the high cost of > the drug, it would be hand carried to the OR and that the surgeon would have to > sign for it......any ideas anyone? > > Another thing I learned and was a little taken aback by, though in retrospect, > probably should not have been., In all of the time, I have been reading, > talking..and learning about TX, I have never read or heard anyone mention being > on a by-pass machine. I was just very surprised by it. > > LAst, but not least, I have written before that the one thing most on my mind is > being on the vent........ ......... I am really scared of this idea. Shands says > they keep you lightly sedated, but want you to be awake and aware of what is > going on. I know I need to get past this, but it is hard. > Take care, hope you all are having a good day, > > KAthy...FL > PF....4/07 > Wtg for TX call > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2010 Report Share Posted January 25, 2010 Kathy, When someone has been on a vent, removing them from that is a process with steps to be followed in order to be certain that the individual is capable of breathing on their own. One of those steps can be t-tube or t-piece trial. This is when assisted breathing (with the vent) is alternated with spontaneous breathing facilitated by a t-tube or t-piece attached to the endotracheal tube. This T-tube has oxygen attached also to provide supplementary oxygen. The patient is watched very closely during this period, sats are monitored etc to ascertain whether the patient is making the necessary respiratory effort to be able to do without the vent. After 30 minutes on the t-tube they did ABG's to make sure I was getting enough O2. For me this went well and they were able to get me off the vent and remove the endoracheal tube. All this varies from person to person and from hospital to hospital. The terminology may be different but usually the basic principles are the same. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Mon, January 25, 2010 9:58:35 AMSubject: Re: Thank You Hey Beth,'what on earth is a T tube trial??/What a weird name for something!Kathy....FlPf.....4/07Wtg for TX call>> Kathy,> I have no idea what drug it was that your physician would have to sign for in the OR. Clearly it's something that's so expensive that they only want to have to use it deliberately. As opposed to using it and then cancelling the surgery and wasting the dose of whatever it is.> > As for the bypass....it makes sense if you think about it. They need something to take over the function of your heart and lungs while they are operating. It allows for a more or less bloodless operating field and that means you lose less blood and that means you recover faster. It's something that makes sense when we think about it but most of us just don't think about this, that thorougly.> > The vent.... well it's not pleasant but it is necessary. And it's really just a step along the way. It's part of the process and you will get through it. It's likely you won't be vented for very long, few people are vented for more than a few hours to a day or so, you may not even remember much of it.> I was vented for two days post-biopsy. I don't remember alot of it. Mostly I remember was the weaning process and the T-tube trials and my sister cheerleading me on so that I could get off the blasted thing. I hated it but I'm glad that kind of equipment is available. Without it these surgeries that save and extend our lives would not be able to be done. Maybe that's a good way to look at it. >  > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08>  >  > > > > > ____________ _________ _________ __> From: patrickkathleen <patrickkathleen@ ...>> To: Breathe-Support@ yahoogroups. com> Sent: Sun, January 24, 2010 12:37:21 PM> Subject: Thank You> >  > Just a note to thank everyone for their warm messages.... .......last Wednesday> was a long day for us. I was in the hospital f11 hours thinking everything was a> go for TX and 10 minutes before I was to go into the OR....everyone else was in> there already, the surgeon took a last look at the lung and said no. I know in> my heart that when it is right, it will happen and my faith is even stronger tha> n it was before Wednesday.> > I have learned some more things and have some questions. As they were getting> all of the meds ready right around 9:15pm, the charge nurse said that there was> 1 more drug to give me before surgery started, but because of the high cost of> the drug, it would be hand carried to the OR and that the surgeon would have to> sign for it......any ideas anyone?> > Another thing I learned and was a little taken aback by, though in retrospect,> probably should not have been., In all of the time, I have been reading,> talking..and learning about TX, I have never read or heard anyone mention being> on a by-pass machine. I was just very surprised by it.> > LAst, but not least, I have written before that the one thing most on my mind is> being on the vent........ ......... I am really scared of this idea. Shands says> they keep you lightly sedated, but want you to be awake and aware of what is> going on. I know I need to get past this, but it is hard.> Take care, hope you all are having a good day,> > KAthy...FL> PF....4/07> Wtg for TX call> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2010 Report Share Posted January 25, 2010 Beth, That was good information..thanks > > > > Kathy, > > I have no idea what drug it was that your physician would have to sign for in the OR. Clearly it's something that's so expensive that they only want to have to use it deliberately. As opposed to using it and then cancelling the surgery and wasting the dose of whatever it is. > > > > As for the bypass....it makes sense if you think about it. They need something to take over the function of your heart and lungs while they are operating. It allows for a more or less bloodless operating field and that means you lose less blood and that means you recover faster. It's something that makes sense when we think about it but most of us just don't think about this, that thorougly. > > > > The vent.... well it's not pleasant but it is necessary. And it's really just a step along the way. It's part of the process and you will get through it. It's likely you won't be vented for very long, few people are vented for more than a few hours to a day or so, you may not even remember much of it. > > I was vented for two days post-biopsy. I don't remember alot of it. Mostly I remember was the weaning process and the T-tube trials and my sister cheerleading me on so that I could get off the blasted thing. I hated it but I'm glad that kind of equipment is available. Without it these surgeries that save and extend our lives would not be able to be done. Maybe that's a good way to look at it. > >  > > Beth > > Moderator > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > >  > >  > > > > > > > > > > ____________ _________ _________ __ > > From: patrickkathleen <patrickkathleen@ ...> > > To: Breathe-Support@ yahoogroups. com > > Sent: Sun, January 24, 2010 12:37:21 PM > > Subject: Thank You > > > >  > > Just a note to thank everyone for their warm messages.... .......last Wednesday > > was a long day for us. I was in the hospital f11 hours thinking everything was a > > go for TX and 10 minutes before I was to go into the OR....everyone else was in > > there already, the surgeon took a last look at the lung and said no. I know in > > my heart that when it is right, it will happen and my faith is even stronger tha > > n it was before Wednesday. > > > > I have learned some more things and have some questions. As they were getting > > all of the meds ready right around 9:15pm, the charge nurse said that there was > > 1 more drug to give me before surgery started, but because of the high cost of > > the drug, it would be hand carried to the OR and that the surgeon would have to > > sign for it......any ideas anyone? > > > > Another thing I learned and was a little taken aback by, though in retrospect, > > probably should not have been., In all of the time, I have been reading, > > talking..and learning about TX, I have never read or heard anyone mention being > > on a by-pass machine. I was just very surprised by it. > > > > LAst, but not least, I have written before that the one thing most on my mind is > > being on the vent........ ......... I am really scared of this idea. Shands says > > they keep you lightly sedated, but want you to be awake and aware of what is > > going on. I know I need to get past this, but it is hard. > > Take care, hope you all are having a good day, > > > > KAthy...FL > > PF....4/07 > > Wtg for TX call > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2010 Report Share Posted September 15, 2010 Hi all, My name is Pam. I was diagnosed in 1989 and have been mudling along. I just signed up last week and Thank you. I have been thinking everything happening was in my mind. My PCP just lets me talk and nothing is done. I am getting the message I need a new dr. My sarcoid specialist retired - though wasn't seeing me but once every year or two. My rhumetologist doesn't really know sarcoidosis I am finding out and only sees me every 6 -12 months. Well, I have been having severe headaches and migraines, my eye dr is phenomenal and stays on top of my retina inflammations, but the burning in my right leg is driving me crazy - I had no idea what it was. Now I hear many talking about it. I am not going crazy yeehaw! I also have the numbness and I have raised painful lumps on my fingers ( is that arthritis or sarcoid?) I also have tremendous chest pressure and pain - I used to go to the ER, but my heart is fine. Is this sarcoid or they also say I have fibromyalgia, but I wonder if the pain is sarcoid. I had never heard of NS until I read this site. Thank you Well, God bless all of you and thank you for opening my eyes. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2010 Report Share Posted September 15, 2010 If the lumps n ur hand r like b-b's that's sarc granulomas i have them all over the backs of my hands and some on the fingers i can push them around under the skin and i have 2 admit i play with them doing that i also have cardiac sarc when it first started my heart was nml which the muscle may b, but sarc likes nerves and it starts messing with the heart u start having ungodly arrthymia problems -too fast, way too slow, etc ur not crazy but dr 's r clueless they do nothing, get defensive, or come up with crazy stuff ---------- Sent from AT & T's Wireless network using Mobile Email - Thank you Hi all, My name is Pam. I was diagnosed in 1989 and have been mudling along. I just signed up last week and Thank you. I have been thinking everything happening was in my mind. My PCP just lets me talk and nothing is done. I am getting the message I need a new dr. My sarcoid specialist retired - though wasn't seeing me but once every year or two. My rhumetologist doesn't really know sarcoidosis I am finding out and only sees me every 6 -12 months. Well, I have been having severe headaches and migraines, my eye dr is phenomenal and stays on top of my retina inflammations, but the burning in my right leg is driving me crazy - I had no idea what it was. Now I hear many talking about it. I am not going crazy yeehaw! I also have the numbness and I have raised painful lumps on my fingers ( is that arthritis or sarcoid?) I also have tremendous chest pressure and pain - I used to go to the ER, but my heart is fine. Is this sarcoid or they also say I have fibromyalgia, but I wonder if the pain is sarcoid. I had never heard of NS until I read this site. Thank you Well, God bless all of you and thank you for opening my eyes. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2010 Report Share Posted September 15, 2010 Hi, Pam. Welcome to the group. Although we're sorry that you needed to find us, this site can provide information & support that's difficult to get anywhere else. Do you mind some questions? What type of sarc were you diagnosed with? Do you have lung lesions? Where do you live? We may be able to help you find at least one doctor knowledgeable about sarc. Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 To: Neurosarcoidosis From: pagtek@...Date: Wed, 15 Sep 2010 05:13:41 -0700Subject: Thank you Hi all, My name is Pam. I was diagnosed in 1989 and have been mudling along. I just signed up last week and Thank you. I have been thinking everything happening was in my mind. My PCP just lets me talk and nothing is done. I am getting the message I need a new dr. My sarcoid specialist retired - though wasn't seeing me but once every year or two. My rhumetologist doesn't really know sarcoidosis I am finding out and only sees me every 6 -12 months. Well, I have been having severe headaches and migraines, my eye dr is phenomenal and stays on top of my retina inflammations, but the burning in my right leg is driving me crazy - I had no idea what it was. Now I hear many talking about it. I am not going crazy yeehaw! I also have the numbness and I have raised painful lumps on my fingers ( is that arthritis or sarcoid?) I also have tremendous chest pressure and pain - I used to go to the ER, but my heart is fine. Is this sarcoid or they also say I have fibromyalgia, but I wonder if the pain is sarcoid. I had never heard of NS until I read this site. Thank you Well, God bless all of you and thank you for opening my eyes. Quote Link to comment Share on other sites More sharing options...
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