Guest guest Posted November 18, 2009 Report Share Posted November 18, 2009 laura i was terrified of the cardiac cath too, but it was a piece of cake i didn't like having to lie flat on my back for several hours afterwards Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: hello friendsTo: Breathe-Support Date: Wednesday, November 18, 2009, 2:22 PM Yesterday I had an appointment with a Pulmonary hypertension Specialist and his team in New Orleans, Doctor Bennet De Boisblanc. I got good news and bad news. The good news is that I may not have Pulmonary Hypertension, the team of doctors that evaluated me yesterday think that there is not enough evidence to confirm I have PH, they want to do a Right Heart Catheter, to find out if indeed I do have PH. In the EKG's it shows Right ventricular systolic pressure is at 35 mmHg, (this is the blood pressure going from my heart to my lungs). this pressure seems to be in the upper normal level. Considering that 27 mmHg is normal pressure and 41 mmHg is severe. The PH specialist told me that most of the times the EKG overestimates the pressure by 50%, the only way to know for sure which is the real pressure is by doing a Right Heart Cath. They told me is an outpatient procedure and I should not be afraid, ( I am scared already) The procedure takes about 30 minutes. I may have this done next Monday. Also good news is that they do have Lung Transplant services at Ochsner New Orleans, that means that in case I need a transplant I don't have to go all the way to Houston to have one. Still we want to keep that appointment with the transplant specialist in Houston, on Nov. 30th. The bad news is that they think that my shortness of breath is due to the increasing of honeycombing (fibrosis) in my lungs. this means that my scleroderma is progressing rapidly. yesterday was a really difficult day, my blood pressure was 99/55, very low, and they made me walk for 6 minutes to check my O2 levels, well it didn't drop too much, I was walking slowly on 4 liters, when I finished the test I was out of breath, had fast heart beating and pain from my knees down. Also my feet were freezing. While walking my heart rate went up to 101 and my oxygen went down to 95. I was so tired I could have gone to sleep right there. Hopefully the whole team of doctors will help me to get better. I am tired of been tired, I don't want to be sick anymore. I want to dance Salsa, Tropical, Rock but most of all I want to be the play mate my autistic son needs, he and I miss the days when we use to play and run around the house, I am his only friend. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2009 Report Share Posted November 18, 2009 God bless you . I hope your doctors figure out a plan to help you so you can enjoy playing with your son again!PJ in OH, 54, IPF 09, Sjogren's 95 hello friends Yesterday I had an appointment with a Pulmonary hypertension Specialist and his team in New Orleans, Doctor Bennet De Boisblanc. I got good news and bad news. The good news is that I may not have Pulmonary Hypertension, the team of doctors that evaluated me yesterday think that there is not enough evidence to confirm I have PH, they want to do a Right Heart Catheter, to find out if indeed I do have PH. In the EKG's it shows Right ventricular systolic pressure is at 35 mmHg, (this is the blood pressure going from my heart to my lungs). this pressure seems to be in the upper normal level. Considering that 27 mmHg is normal pressure and 41 mmHg is severe. The PH specialist told me that most of the times the EKG overestimates the pressure by 50%, the only way to know for sure which is the real pressure is by doing a Right Heart Cath. They told me is an outpatient procedure and I should not be afraid, ( I am scared already) The procedure takes about 30 minutes. I may have this done next Monday. Also good news is that they do have Lung Transplant services at Ochsner New Orleans, that means that in case I need a transplant I don't have to go all the way to Houston to have one. Still we want to keep that appointment with the transplant specialist in Houston, on Nov. 30th. The bad news is that they think that my shortness of breath is due to the increasing of honeycombing (fibrosis) in my lungs. this means that my scleroderma is progressing rapidly. yesterday was a really difficult day, my blood pressure was 99/55, very low, and they made me walk for 6 minutes to check my O2 levels, well it didn't drop too much, I was walking slowly on 4 liters, when I finished the test I was out of breath, had fast heart beating and pain from my knees down. Also my feet were freezing. While walking my heart rate went up to 101 and my oxygen went down to 95. I was so tired I could have gone to sleep right there. Hopefully the whole team of doctors will help me to get better. I am tired of been tired, I don't want to be sick anymore. I want to dance Salsa, Tropical, Rock but most of all I want to be the play mate my autistic son needs, he and I miss the days when we use to play and run around the house, I am his only friend. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2009 Report Share Posted November 18, 2009 Dyane With a right heart catheter just for PH you don't have to lay flat for six hours. In your case they were obviously looking in other places as well. My right heart catheter was through my neck. Women are through the groin more often than men are because of the neck anatomy. I had only local anesthesia and watched the entire procedure on the same monitor the Cardiologist was watching. Sorry yours had to be so much more involved than mine. > > > > ... your last line really hit my heart, talking about how you > and your son miss playing together. I also miss what I cannot do anymore > with my great grandkids. They don't really understand. How old is he? > > > > I think I'm looking at a right heart cath. as well. I'll see the > cardio-gal on Thursday and will know then. > > I too get sick and tired of being sick and tired! > > Love, > > > > > > > > > > > > > > > > MamaSher; 71, IPF 3-2006, OR. > > Don't fret about tomorrow, God is already there! > > hello friends > > > > > > > > Yesterday I had an appointment with a Pulmonary hypertension > Specialist and his team in New Orleans, Doctor Bennet De Boisblanc. I > got good news and bad news. > > > > The good news is that I may not have Pulmonary Hypertension, > the team of doctors that evaluated me yesterday think that there is not > enough evidence to confirm I have PH, they want to do a Right Heart > Catheter, to find out if indeed I do have PH. > > > > In the EKG's it shows Right ventricular systolic pressure is > at 35 mmHg, (this is the blood pressure going from my heart to my > lungs). this pressure seems to be in the upper normal level. Considering > that 27 mmHg is normal pressure and 41 mmHg is severe. > > > > The PH specialist told me that most of the times the EKG > overestimates the pressure by 50%, the only way to know for sure which > is the real pressure is by doing a Right Heart Cath. > > > > They told me is an outpatient procedure and I should not be > afraid, ( I am scared already) The procedure takes about 30 minutes. I > may have this done next Monday. > > > > Also good news is that they do have Lung Transplant services > at Ochsner New Orleans, that means that in case I need a transplant I > don't have to go all the way to Houston to have one. Still we want to > keep that appointment with the transplant specialist in Houston, on Nov. > 30th. > > > > The bad news is that they think that my shortness of breath is > due to the increasing of honeycombing (fibrosis) in my lungs. this means > that my scleroderma is progressing rapidly. > > > > yesterday was a really difficult day, my blood pressure was > 99/55, very low, and they made me walk for 6 minutes to check my O2 > levels, well it didn't drop too much, I was walking slowly on 4 liters, > when I finished the test I was out of breath, had fast heart beating and > pain from my knees down. Also my feet were freezing. While walking my > heart rate went up to 101 and my oxygen went down to 95. I was so tired > I could have gone to sleep right there. > > > > Hopefully the whole team of doctors will help me to get > better. I am tired of been tired, I don't want to be sick anymore. I > want to dance Salsa, Tropical, Rock but most of all I want to be the > play mate my autistic son needs, he and I miss the days when we use to > play and run around the house, I am his only friend. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2009 Report Share Posted November 18, 2009 , I'm so happy to hear that you have finally found a way to get the medical care that you need and that things are moving forward for you. You and your son are in my prayers. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Wed, November 18, 2009 2:22:22 PMSubject: hello friends Yesterday I had an appointment with a Pulmonary hypertension Specialist and his team in New Orleans, Doctor Bennet De Boisblanc. I got good news and bad news. The good news is that I may not have Pulmonary Hypertension, the team of doctors that evaluated me yesterday think that there is not enough evidence to confirm I have PH, they want to do a Right Heart Catheter, to find out if indeed I do have PH. In the EKG's it shows Right ventricular systolic pressure is at 35 mmHg, (this is the blood pressure going from my heart to my lungs). this pressure seems to be in the upper normal level. Considering that 27 mmHg is normal pressure and 41 mmHg is severe. The PH specialist told me that most of the times the EKG overestimates the pressure by 50%, the only way to know for sure which is the real pressure is by doing a Right Heart Cath. They told me is an outpatient procedure and I should not be afraid, ( I am scared already) The procedure takes about 30 minutes. I may have this done next Monday. Also good news is that they do have Lung Transplant services at Ochsner New Orleans, that means that in case I need a transplant I don't have to go all the way to Houston to have one. Still we want to keep that appointment with the transplant specialist in Houston, on Nov. 30th. The bad news is that they think that my shortness of breath is due to the increasing of honeycombing (fibrosis) in my lungs. this means that my scleroderma is progressing rapidly. yesterday was a really difficult day, my blood pressure was 99/55, very low, and they made me walk for 6 minutes to check my O2 levels, well it didn't drop too much, I was walking slowly on 4 liters, when I finished the test I was out of breath, had fast heart beating and pain from my knees down. Also my feet were freezing. While walking my heart rate went up to 101 and my oxygen went down to 95. I was so tired I could have gone to sleep right there. Hopefully the whole team of doctors will help me to get better. I am tired of been tired, I don't want to be sick anymore. I want to dance Salsa, Tropical, Rock but most of all I want to be the play mate my autistic son needs, he and I miss the days when we use to play and run around the house, I am his only friend. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2009 Report Share Posted November 19, 2009 Hi Sher, my autistic son is 7, his name is Robby. He cant talk but he doesn't need to talk to me because i understand him prefectly. But nobody else does. I have two more sons, is 12 and he is a TaekwonDo Champion, and my oldest son Cesar is 20. Subject: Re: hello friendsTo: Breathe-Support Date: Wednesday, November 18, 2009, 2:32 PM ... your last line really hit my heart, talking about how you and your son miss playing together. I also miss what I cannot do anymore with my great grandkids. They don't really understand. How old is he? I think I'm looking at a right heart cath. as well. I'll see the cardio-gal on Thursday and will know then. I too get sick and tired of being sick and tired! Love, MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there! hello friends Yesterday I had an appointment with a Pulmonary hypertension Specialist and his team in New Orleans, Doctor Bennet De Boisblanc. I got good news and bad news. The good news is that I may not have Pulmonary Hypertension, the team of doctors that evaluated me yesterday think that there is not enough evidence to confirm I have PH, they want to do a Right Heart Catheter, to find out if indeed I do have PH. In the EKG's it shows Right ventricular systolic pressure is at 35 mmHg, (this is the blood pressure going from my heart to my lungs). this pressure seems to be in the upper normal level. Considering that 27 mmHg is normal pressure and 41 mmHg is severe. The PH specialist told me that most of the times the EKG overestimates the pressure by 50%, the only way to know for sure which is the real pressure is by doing a Right Heart Cath. They told me is an outpatient procedure and I should not be afraid, ( I am scared already) The procedure takes about 30 minutes. I may have this done next Monday. Also good news is that they do have Lung Transplant services at Ochsner New Orleans, that means that in case I need a transplant I don't have to go all the way to Houston to have one. Still we want to keep that appointment with the transplant specialist in Houston, on Nov. 30th. The bad news is that they think that my shortness of breath is due to the increasing of honeycombing (fibrosis) in my lungs. this means that my scleroderma is progressing rapidly. yesterday was a really difficult day, my blood pressure was 99/55, very low, and they made me walk for 6 minutes to check my O2 levels, well it didn't drop too much, I was walking slowly on 4 liters, when I finished the test I was out of breath, had fast heart beating and pain from my knees down. Also my feet were freezing. While walking my heart rate went up to 101 and my oxygen went down to 95. I was so tired I could have gone to sleep right there. Hopefully the whole team of doctors will help me to get better. I am tired of been tired, I don't want to be sick anymore. I want to dance Salsa, Tropical, Rock but most of all I want to be the play mate my autistic son needs, he and I miss the days when we use to play and run around the house, I am his only friend. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2009 Report Share Posted November 19, 2009 Thanks Bruce, Yeah they were checking other things too, it really wasn't bad though, I would have liked to have been less 'happy' so I could have seen more but never thought to tell them. They think I am so weird when I tell them I want to watch during my colonoscopy but hey after all that lousy prep I at least want a good show LOLDyane Phoenix ipf 02> > >> > > ... your last line really hit my heart, talking about how you> > and your son miss playing together. I also miss what I cannot do> anymore> > with my great grandkids. They don't really understand. How old is he?> > >> > > I think I'm looking at a right heart cath. as well. I'll see the> > cardio-gal on Thursday and will know then.> > > I too get sick and tired of being sick and tired!> > > Love,> > >> > >> > >> > >> > >> > >> > >> > > MamaSher; 71, IPF 3-2006, OR.> > > Don't fret about tomorrow, God is already there!> > > hello friends> > >> > >> > >> > > Yesterday I had an appointment with a Pulmonary hypertension> > Specialist and his team in New Orleans, Doctor Bennet De Boisblanc. I> > got good news and bad news.> > >> > > The good news is that I may not have Pulmonary Hypertension,> > the team of doctors that evaluated me yesterday think that there is> not> > enough evidence to confirm I have PH, they want to do a Right Heart> > Catheter, to find out if indeed I do have PH.> > >> > > In the EKG's it shows Right ventricular systolic pressure is> > at 35 mmHg, (this is the blood pressure going from my heart to my> > lungs). this pressure seems to be in the upper normal level.> Considering> > that 27 mmHg is normal pressure and 41 mmHg is severe.> > >> > > The PH specialist told me that most of the times the EKG> > overestimates the pressure by 50%, the only way to know for sure which> > is the real pressure is by doing a Right Heart Cath.> > >> > > They told me is an outpatient procedure and I should not be> > afraid, ( I am scared already) The procedure takes about 30 minutes. I> > may have this done next Monday.> > >> > > Also good news is that they do have Lung Transplant services> > at Ochsner New Orleans, that means that in case I need a transplant I> > don't have to go all the way to Houston to have one. Still we want to> > keep that appointment with the transplant specialist in Houston, on> Nov.> > 30th.> > >> > > The bad news is that they think that my shortness of breath> is> > due to the increasing of honeycombing (fibrosis) in my lungs. this> means> > that my scleroderma is progressing rapidly.> > >> > > yesterday was a really difficult day, my blood pressure was> > 99/55, very low, and they made me walk for 6 minutes to check my O2> > levels, well it didn't drop too much, I was walking slowly on 4> liters,> > when I finished the test I was out of breath, had fast heart beating> and> > pain from my knees down. Also my feet were freezing. While walking my> > heart rate went up to 101 and my oxygen went down to 95. I was so> tired> > I could have gone to sleep right there.> > >> > > Hopefully the whole team of doctors will help me to get> > better. I am tired of been tired, I don't want to be sick anymore. I> > want to dance Salsa, Tropical, Rock but most of all I want to be the> > play mate my autistic son needs, he and I miss the days when we use to> > play and run around the house, I am his only friend.> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2009 Report Share Posted November 19, 2009 Dyane - I am with you. I love knowing what is going on. I would opt to watch it all. I also have an adverse reaction to some of the drugs they give you to " ease the pain " . I don't know how I will do on morphine as the couple of times they have given it to me I have gotten sick. You can have percocet too. My brother loves his prednisone that he takes for one week at a low dose once a year. It seems to ease the back pain he has from a bad car accident a few year ago. I usually just ask for an aspirin. I lived with bone spurs on my knee before I had knee surgery so when they asked me how I felt after my knee replacement, I told them I was ready and " rearin " to go!! They thought maybe there was something else wrong with me (LOL). I guess I have a pretty high threshold of pain that I can tolerate. My thoracic surgeon was impressed. I told him the only thing I wanted was an aspirin. He was also impressed that I followed his instructions on clearing my lungs. He has many patients that won't cough because it hurts. I guess I am just lucky. I wish they would video the procedures so you could watch them later. Stefani 61 year old Utahn ILD 2/2006, NSIP (fibrotic) 10/2009, Diabetes II 2/2006, Sleep Apnea 4/2009 > > > > > > > > ... your last line really hit my heart, talking about how > you > > > and your son miss playing together. I also miss what I cannot do > > anymore > > > with my great grandkids. They don't really understand. How old is > he? > > > > > > > > I think I'm looking at a right heart cath. as well. I'll see the > > > cardio-gal on Thursday and will know then. > > > > I too get sick and tired of being sick and tired! > > > > Love, > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > MamaSher; 71, IPF 3-2006, OR. > > > > Don't fret about tomorrow, God is already there! > > > > hello friends > > > > > > > > > > > > > > > > Yesterday I had an appointment with a Pulmonary > hypertension > > > Specialist and his team in New Orleans, Doctor Bennet De Boisblanc. > I > > > got good news and bad news. > > > > > > > > The good news is that I may not have Pulmonary > Hypertension, > > > the team of doctors that evaluated me yesterday think that there is > > not > > > enough evidence to confirm I have PH, they want to do a Right Heart > > > Catheter, to find out if indeed I do have PH. > > > > > > > > In the EKG's it shows Right ventricular systolic pressure > is > > > at 35 mmHg, (this is the blood pressure going from my heart to my > > > lungs). this pressure seems to be in the upper normal level. > > Considering > > > that 27 mmHg is normal pressure and 41 mmHg is severe. > > > > > > > > The PH specialist told me that most of the times the EKG > > > overestimates the pressure by 50%, the only way to know for sure > which > > > is the real pressure is by doing a Right Heart Cath. > > > > > > > > They told me is an outpatient procedure and I should not > be > > > afraid, ( I am scared already) The procedure takes about 30 minutes. > I > > > may have this done next Monday. > > > > > > > > Also good news is that they do have Lung Transplant > services > > > at Ochsner New Orleans, that means that in case I need a transplant > I > > > don't have to go all the way to Houston to have one. Still we want > to > > > keep that appointment with the transplant specialist in Houston, on > > Nov. > > > 30th. > > > > > > > > The bad news is that they think that my shortness of > breath > > is > > > due to the increasing of honeycombing (fibrosis) in my lungs. this > > means > > > that my scleroderma is progressing rapidly. > > > > > > > > yesterday was a really difficult day, my blood pressure > was > > > 99/55, very low, and they made me walk for 6 minutes to check my O2 > > > levels, well it didn't drop too much, I was walking slowly on 4 > > liters, > > > when I finished the test I was out of breath, had fast heart beating > > and > > > pain from my knees down. Also my feet were freezing. While walking > my > > > heart rate went up to 101 and my oxygen went down to 95. I was so > > tired > > > I could have gone to sleep right there. > > > > > > > > Hopefully the whole team of doctors will help me to get > > > better. I am tired of been tired, I don't want to be sick anymore. I > > > want to dance Salsa, Tropical, Rock but most of all I want to be the > > > play mate my autistic son needs, he and I miss the days when we use > to > > > play and run around the house, I am his only friend. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2009 Report Share Posted November 19, 2009 I'm so sorry you're going thru. this Stef <FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif"></FONT> To: Breathe-Support Sent: Thu, November 19, 2009 1:43:01 PMSubject: Re: hello friends Dyane -I am with you. I love knowing what is going on. I would opt to watch it all. I also have an adverse reaction to some of the drugs they give you to "ease the pain". I don't know how I will do on morphine as the couple of times they have given it to me I have gotten sick. You can have percocet too. My brother loves his prednisone that he takes for one week at a low dose once a year. It seems to ease the back pain he has from a bad car accident a few year ago. I usually just ask for an aspirin. I lived with bone spurs on my knee before I had knee surgery so when they asked me how I felt after my knee replacement, I told them I was ready and "rearin" to go!! They thought maybe there was something else wrong with me (LOL). I guess I have a pretty high threshold of pain that I can tolerate. My thoracic surgeon was impressed. I told him the only thing I wanted was an aspirin. He was also impressed that I followed his instructions on clearing my lungs. He has many patients that won't cough because it hurts. I guess I am just lucky. I wish they would video the procedures so you could watch them later. Stefani 61 year old UtahnILD 2/2006, NSIP (fibrotic) 10/2009, Diabetes II 2/2006, Sleep Apnea 4/2009> > > >> > > > ... your last line really hit my heart, talking about how> you> > > and your son miss playing together. I also miss what I cannot do> > anymore> > > with my great grandkids. They don't really understand. How old is> he?> > > >> > > > I think I'm looking at a right heart cath. as well. I'll see the> > > cardio-gal on Thursday and will know then.> > > > I too get sick and tired of being sick and tired!> > > > Love,> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > > MamaSher; 71, IPF 3-2006, OR.> > > > Don't fret about tomorrow, God is already there!> > > > hello friends> > > >> > > >> > > >> > > > Yesterday I had an appointment with a Pulmonary> hypertension> > > Specialist and his team in New Orleans, Doctor Bennet De Boisblanc.> I> > > got good news and bad news.> > > >> > > > The good news is that I may not have Pulmonary> Hypertension,> > > the team of doctors that evaluated me yesterday think that there is> > not> > > enough evidence to confirm I have PH, they want to do a Right Heart> > > Catheter, to find out if indeed I do have PH.> > > >> > > > In the EKG's it shows Right ventricular systolic pressure> is> > > at 35 mmHg, (this is the blood pressure going from my heart to my> > > lungs). this pressure seems to be in the upper normal level.> > Considering> > > that 27 mmHg is normal pressure and 41 mmHg is severe.> > > >> > > > The PH specialist told me that most of the times the EKG> > > overestimates the pressure by 50%, the only way to know for sure> which> > > is the real pressure is by doing a Right Heart Cath.> > > >> > > > They told me is an outpatient procedure and I should not> be> > > afraid, ( I am scared already) The procedure takes about 30 minutes.> I> > > may have this done next Monday.> > > >> > > > Also good news is that they do have Lung Transplant> services> > > at Ochsner New Orleans, that means that in case I need a transplant> I> > > don't have to go all the way to Houston to have one. Still we want> to> > > keep that appointment with the transplant specialist in Houston, on> > Nov.> > > 30th.> > > >> > > > The bad news is that they think that my shortness of> breath> > is> > > due to the increasing of honeycombing (fibrosis) in my lungs. this> > means> > > that my scleroderma is progressing rapidly.> > > >> > > > yesterday was a really difficult day, my blood pressure> was> > > 99/55, very low, and they made me walk for 6 minutes to check my O2> > > levels, well it didn't drop too much, I was walking slowly on 4> > liters,> > > when I finished the test I was out of breath, had fast heart beating> > and> > > pain from my knees down. Also my feet were freezing. While walking> my> > > heart rate went up to 101 and my oxygen went down to 95. I was so> > tired> > > I could have gone to sleep right there.> > > >> > > > Hopefully the whole team of doctors will help me to get> > > better. I am tired of been tired, I don't want to be sick anymore. I> > > want to dance Salsa, Tropical, Rock but most of all I want to be the> > > play mate my autistic son needs, he and I miss the days when we use> to> > > play and run around the house, I am his only friend.> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2009 Report Share Posted November 20, 2009  I'm glad you have each other as well as and and Cesar. Our kids are so great. Wonderful you understand Robby 'perfectly'. Hugs to you. MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there! hello friends Yesterday I had an appointment with a Pulmonary hypertension Specialist and his team in New Orleans, Doctor Bennet De Boisblanc. I got good news and bad news. The good news is that I may not have Pulmonary Hypertension, the team of doctors that evaluated me yesterday think that there is not enough evidence to confirm I have PH, they want to do a Right Heart Catheter, to find out if indeed I do have PH. In the EKG's it shows Right ventricular systolic pressure is at 35 mmHg, (this is the blood pressure going from my heart to my lungs). this pressure seems to be in the upper normal level. Considering that 27 mmHg is normal pressure and 41 mmHg is severe. The PH specialist told me that most of the times the EKG overestimates the pressure by 50%, the only way to know for sure which is the real pressure is by doing a Right Heart Cath. They told me is an outpatient procedure and I should not be afraid, ( I am scared already) The procedure takes about 30 minutes. I may have this done next Monday. Also good news is that they do have Lung Transplant services at Ochsner New Orleans, that means that in case I need a transplant I don't have to go all the way to Houston to have one. Still we want to keep that appointment with the transplant specialist in Houston, on Nov. 30th. The bad news is that they think that my shortness of breath is due to the increasing of honeycombing (fibrosis) in my lungs. this means that my scleroderma is progressing rapidly. yesterday was a really difficult day, my blood pressure was 99/55, very low, and they made me walk for 6 minutes to check my O2 levels, well it didn't drop too much, I was walking slowly on 4 liters, when I finished the test I was out of breath, had fast heart beating and pain from my knees down. Also my feet were freezing. While walking my heart rate went up to 101 and my oxygen went down to 95. I was so tired I could have gone to sleep right there. Hopefully the whole team of doctors will help me to get better. I am tired of been tired, I don't want to be sick anymore. I want to dance Salsa, Tropical, Rock but most of all I want to be the play mate my autistic son needs, he and I miss the days when we use to play and run around the house, I am his only friend. Quote Link to comment Share on other sites More sharing options...
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