Guest guest Posted November 21, 2009 Report Share Posted November 21, 2009 & Sher, I am scheduled for a RH catheter this coming Tuesday, 11/24. The results of my Echo showed an elevated systolic pressure of 45 mmHg. The cardiologist who will be performing the procedure doesn't seem too concerned about the elevation, but Dr. Raghu at the UWMC thinks I do have Pulmonary Hypertension; he wants the results sent to him soon after the procedure. I'm scared too, but more so for what else they might find during the procedure. The cardio said if the pressure is high and hypertension is present they go ahead and treat it by running something called Flolan through an IV and then I would be put on daily medication.. In addition, if they find plaque buildup in the artery they will perform a balloon stint to repair and I would have to stay over in the hospital one night. If they find some other damage to my heart that would require a bypass they do that right then and there too and that would require a 3-day hospital stay. Either of those events is not something I want to experience. I have been treated with a statin drug for high cholesterol for almost nine years now, so I wouldn't be surprised if they find plaque buildup. The cardio doc said I won't be put completely out for the procedure they just localize the entry area of the groin where the tubing goes in. And he said normally they give the patient a sedative but he said he was afraid to give me a sedative because of my lung disease, I'm thinking so what! Just give the sedative with O2 and I'll be fine! I would be so thankful for anyone who can pray for me that all will go well. C_53_Familial IPF_5/09Washington To: Breathe-Support Sent: Wed, November 18, 2009 12:32:07 PMSubject: Re: hello friends ... 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 21, 2009 Report Share Posted November 21, 2009 , Your cardiologists caution with regard to sedation is well founded. People with lung disease (especially restrictive lung disease) don't always respond well to sedation. It is best to approach it very carefully and perhaps avoid it if possible. My own experience with pre-op sedation prior to my lung biopsy was life threatening. With just the mild pre-op shot my respirations become so suppressed that I desatted in to the 70's on 3 liters of O2. I remember none of this but when I met with the anesthesiologist a few days later he was clearly shaken by what had happened. While we have members who have had sedation and do fine, it's just not something we can count on 100%. I'm interested in what they will do if the find pulmonary hypertension. You mentioned Flolan...is that a one time treatment they are talking about or would that be the med you are on permanantly? Deciding to use Flolan is a committment as it's generally given as a continuous infusion via a permanant indwelling catheter. I'm just curious if they've talked about it as a one time treatment and then switching you to something else or if they want you to be on the Flolan. Finally try not to be too nervous. So often the pressure can read high on the echo and then when they get an actual pressure measurement during the cath it's well within the normal range. Hopefully that will be the case with you. Please let us know. I will be thinking of you and praying for you! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Sat, November 21, 2009 8:28:49 PMSubject: Re: RH Catheterization & Sher, I am scheduled for a RH catheter this coming Tuesday, 11/24. The results of my Echo showed an elevated systolic pressure of 45 mmHg. The cardiologist who will be performing the procedure doesn't seem too concerned about the elevation, but Dr. Raghu at the UWMC thinks I do have Pulmonary Hypertension; he wants the results sent to him soon after the procedure. I'm scared too, but more so for what else they might find during the procedure. The cardio said if the pressure is high and hypertension is present they go ahead and treat it by running something called Flolan through an IV and then I would be put on daily medication.. In addition, if they find plaque buildup in the artery they will perform a balloon stint to repair and I would have to stay over in the hospital one night. If they find some other damage to my heart that would require a bypass they do that right then and there too and that would require a 3-day hospital stay. Either of those events is not something I want to experience. I have been treated with a statin drug for high cholesterol for almost nine years now, so I wouldn't be surprised if they find plaque buildup. The cardio doc said I won't be put completely out for the procedure they just localize the entry area of the groin where the tubing goes in. And he said normally they give the patient a sedative but he said he was afraid to give me a sedative because of my lung disease, I'm thinking so what! Just give the sedative with O2 and I'll be fine! I would be so thankful for anyone who can pray for me that all will go well. C_53_Familial IPF_5/09Washington From: Sher Bauman <bofus6 (AT) verizon (DOT) net>To: Breathe-Support@ yahoogroups. comSent: Wed, November 18, 2009 12:32:07 PMSubject: Re: hello friends ... 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. 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Guest guest Posted November 21, 2009 Report Share Posted November 21, 2009 will be thinking of you on tuesday -- Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: RH CatheterizationTo: Breathe-Support Date: Saturday, November 21, 2009, 8:28 PM & Sher, I am scheduled for a RH catheter this coming Tuesday, 11/24. The results of my Echo showed an elevated systolic pressure of 45 mmHg. The cardiologist who will be performing the procedure doesn't seem too concerned about the elevation, but Dr. Raghu at the UWMC thinks I do have Pulmonary Hypertension; he wants the results sent to him soon after the procedure. I'm scared too, but more so for what else they might find during the procedure. The cardio said if the pressure is high and hypertension is present they go ahead and treat it by running something called Flolan through an IV and then I would be put on daily medication.. In addition, if they find plaque buildup in the artery they will perform a balloon stint to repair and I would have to stay over in the hospital one night. If they find some other damage to my heart that would require a bypass they do that right then and there too and that would require a 3-day hospital stay. Either of those events is not something I want to experience. I have been treated with a statin drug for high cholesterol for almost nine years now, so I wouldn't be surprised if they find plaque buildup. The cardio doc said I won't be put completely out for the procedure they just localize the entry area of the groin where the tubing goes in. And he said normally they give the patient a sedative but he said he was afraid to give me a sedative because of my lung disease, I'm thinking so what! Just give the sedative with O2 and I'll be fine! I would be so thankful for anyone who can pray for me that all will go well. C_53_Familial IPF_5/09Washington From: Sher Bauman <bofus6 (AT) verizon (DOT) net>To: Breathe-Support@ yahoogroups. comSent: Wed, November 18, 2009 12:32:07 PMSubject: Re: hello friends ... 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 22, 2009 Report Share Posted November 22, 2009  ... well we can darn sure pray for each other! I will be staying overnight mainly because the procedure is being done so late in the day and my cardio-gal knows how apprehensive I am and she suggested I do just to feel better. She said I will be sedated so that makes me feel better too. Dr Raghu is also the one who wanted the RHC done, he does think I have PH and by gosh the echo showed "mild" PH. I feel so much more confident about my care with Raghu at the wheel. I will be thinking about 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...
Guest guest Posted November 22, 2009 Report Share Posted November 22, 2009 , I will certainly say a prayer for you and wish you well. I may have to have one as well so I'll be anxious to hear how you did. Adrienne To: Breathe-Support Sent: Sat, November 21, 2009 8:28:49 PMSubject: Re: RH Catheterization & Sher, I am scheduled for a RH catheter this coming Tuesday, 11/24. The results of my Echo showed an elevated systolic pressure of 45 mmHg. The cardiologist who will be performing the procedure doesn't seem too concerned about the elevation, but Dr. Raghu at the UWMC thinks I do have Pulmonary Hypertension; he wants the results sent to him soon after the procedure. I'm scared too, but more so for what else they might find during the procedure. The cardio said if the pressure is high and hypertension is present they go ahead and treat it by running something called Flolan through an IV and then I would be put on daily medication.. In addition, if they find plaque buildup in the artery they will perform a balloon stint to repair and I would have to stay over in the hospital one night. If they find some other damage to my heart that would require a bypass they do that right then and there too and that would require a 3-day hospital stay.. Either of those events is not something I want to experience. I have been treated with a statin drug for high cholesterol for almost nine years now, so I wouldn't be surprised if they find plaque buildup. The cardio doc said I won't be put completely out for the procedure they just localize the entry area of the groin where the tubing goes in. And he said normally they give the patient a sedative but he said he was afraid to give me a sedative because of my lung disease, I'm thinking so what! Just give the sedative with O2 and I'll be fine! I would be so thankful for anyone who can pray for me that all will go well. C_53_Familial IPF_5/09Washington From: Sher Bauman <bofus6 (AT) verizon (DOT) net>To: Breathe-Support@ yahoogroups. comSent: Wed, November 18, 2009 12:32:07 PMSubject: Re: hello friends ... 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 22, 2009 Report Share Posted November 22, 2009 Wow, thanks for letting me know that Beth about the Cardio's regard to sedation. That would be frightening what you went through. I think he said if I have the PH they would start this Flolan right then and there intraveneously, but then I would be on a pill form, like Viagra. Guess I'll know more that day. Thanks for your prayers, I'm trying not to be scared about it, just want it over-with. C_53_Familial IPF_5/09Washington To: Breathe-Support Sent: Sat, November 21, 2009 5:57:34 PMSubject: Re: RH Catheterization , Your cardiologists caution with regard to sedation is well founded. People with lung disease (especially restrictive lung disease) don't always respond well to sedation. It is best to approach it very carefully and perhaps avoid it if possible. My own experience with pre-op sedation prior to my lung biopsy was life threatening. With just the mild pre-op shot my respirations become so suppressed that I desatted in to the 70's on 3 liters of O2. I remember none of this but when I met with the anesthesiologist a few days later he was clearly shaken by what had happened. While we have members who have had sedation and do fine, it's just not something we can count on 100%. I'm interested in what they will do if the find pulmonary hypertension. You mentioned Flolan...is that a one time treatment they are talking about or would that be the med you are on permanantly? Deciding to use Flolan is a committment as it's generally given as a continuous infusion via a permanant indwelling catheter. I'm just curious if they've talked about it as a one time treatment and then switching you to something else or if they want you to be on the Flolan. Finally try not to be too nervous. So often the pressure can read high on the echo and then when they get an actual pressure measurement during the cath it's well within the normal range. Hopefully that will be the case with you. Please let us know. I will be thinking of you and praying for you! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: worth <hope2thend (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sat, November 21, 2009 8:28:49 PMSubject: Re: RH Catheterization & Sher, I am scheduled for a RH catheter this coming Tuesday, 11/24. The results of my Echo showed an elevated systolic pressure of 45 mmHg. The cardiologist who will be performing the procedure doesn't seem too concerned about the elevation, but Dr. Raghu at the UWMC thinks I do have Pulmonary Hypertension; he wants the results sent to him soon after the procedure. I'm scared too, but more so for what else they might find during the procedure. The cardio said if the pressure is high and hypertension is present they go ahead and treat it by running something called Flolan through an IV and then I would be put on daily medication.. In addition, if they find plaque buildup in the artery they will perform a balloon stint to repair and I would have to stay over in the hospital one night. If they find some other damage to my heart that would require a bypass they do that right then and there too and that would require a 3-day hospital stay. Either of those events is not something I want to experience. I have been treated with a statin drug for high cholesterol for almost nine years now, so I wouldn't be surprised if they find plaque buildup. The cardio doc said I won't be put completely out for the procedure they just localize the entry area of the groin where the tubing goes in. And he said normally they give the patient a sedative but he said he was afraid to give me a sedative because of my lung disease, I'm thinking so what! Just give the sedative with O2 and I'll be fine! I would be so thankful for anyone who can pray for me that all will go well. C_53_Familial IPF_5/09Washington From: Sher Bauman <bofus6 (AT) verizon (DOT) net>To: Breathe-Support@ yahoogroups. comSent: Wed, November 18, 2009 12:32:07 PMSubject: Re: hello friends ... 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 22, 2009 Report Share Posted November 22, 2009 Adrienne if you have one, let me know if you need anyone to go with you or help in some way Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: RH CatheterizationTo: Breathe-Support Date: Sunday, November 22, 2009, 5:48 PM , I will certainly say a prayer for you and wish you well. I may have to have one as well so I'll be anxious to hear how you did. Adrienne From: worth <hope2thend (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sat, November 21, 2009 8:28:49 PMSubject: Re: RH Catheterization & Sher, I am scheduled for a RH catheter this coming Tuesday, 11/24. The results of my Echo showed an elevated systolic pressure of 45 mmHg. The cardiologist who will be performing the procedure doesn't seem too concerned about the elevation, but Dr. Raghu at the UWMC thinks I do have Pulmonary Hypertension; he wants the results sent to him soon after the procedure. I'm scared too, but more so for what else they might find during the procedure. The cardio said if the pressure is high and hypertension is present they go ahead and treat it by running something called Flolan through an IV and then I would be put on daily medication.. In addition, if they find plaque buildup in the artery they will perform a balloon stint to repair and I would have to stay over in the hospital one night. If they find some other damage to my heart that would require a bypass they do that right then and there too and that would require a 3-day hospital stay.. Either of those events is not something I want to experience. I have been treated with a statin drug for high cholesterol for almost nine years now, so I wouldn't be surprised if they find plaque buildup. The cardio doc said I won't be put completely out for the procedure they just localize the entry area of the groin where the tubing goes in. And he said normally they give the patient a sedative but he said he was afraid to give me a sedative because of my lung disease, I'm thinking so what! Just give the sedative with O2 and I'll be fine! I would be so thankful for anyone who can pray for me that all will go well. C_53_Familial IPF_5/09Washington From: Sher Bauman <bofus6 (AT) verizon (DOT) net>To: Breathe-Support@ yahoogroups. comSent: Wed, November 18, 2009 12:32:07 PMSubject: Re: hello friends ... 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. 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Guest guest Posted November 22, 2009 Report Share Posted November 22, 2009 i was terrified of the cardiac cath == it turned out to be a piece of cake i didn't like have to lie flat on my back for several hours afterwords Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: RH CatheterizationTo: Breathe-Support Date: Sunday, November 22, 2009, 6:05 PM Wow, thanks for letting me know that Beth about the Cardio's regard to sedation. That would be frightening what you went through. I think he said if I have the PH they would start this Flolan right then and there intraveneously, but then I would be on a pill form, like Viagra. Guess I'll know more that day. Thanks for your prayers, I'm trying not to be scared about it, just want it over-with. C_53_Familial IPF_5/09Washington From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sat, November 21, 2009 5:57:34 PMSubject: Re: RH Catheterization , Your cardiologists caution with regard to sedation is well founded. People with lung disease (especially restrictive lung disease) don't always respond well to sedation. It is best to approach it very carefully and perhaps avoid it if possible. My own experience with pre-op sedation prior to my lung biopsy was life threatening. With just the mild pre-op shot my respirations become so suppressed that I desatted in to the 70's on 3 liters of O2. I remember none of this but when I met with the anesthesiologist a few days later he was clearly shaken by what had happened. While we have members who have had sedation and do fine, it's just not something we can count on 100%. I'm interested in what they will do if the find pulmonary hypertension. You mentioned Flolan...is that a one time treatment they are talking about or would that be the med you are on permanantly? Deciding to use Flolan is a committment as it's generally given as a continuous infusion via a permanant indwelling catheter. I'm just curious if they've talked about it as a one time treatment and then switching you to something else or if they want you to be on the Flolan. Finally try not to be too nervous. So often the pressure can read high on the echo and then when they get an actual pressure measurement during the cath it's well within the normal range. Hopefully that will be the case with you. Please let us know. I will be thinking of you and praying for you! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: worth <hope2thend (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sat, November 21, 2009 8:28:49 PMSubject: Re: RH Catheterization & Sher, I am scheduled for a RH catheter this coming Tuesday, 11/24. The results of my Echo showed an elevated systolic pressure of 45 mmHg. The cardiologist who will be performing the procedure doesn't seem too concerned about the elevation, but Dr. Raghu at the UWMC thinks I do have Pulmonary Hypertension; he wants the results sent to him soon after the procedure. I'm scared too, but more so for what else they might find during the procedure. The cardio said if the pressure is high and hypertension is present they go ahead and treat it by running something called Flolan through an IV and then I would be put on daily medication.. In addition, if they find plaque buildup in the artery they will perform a balloon stint to repair and I would have to stay over in the hospital one night. If they find some other damage to my heart that would require a bypass they do that right then and there too and that would require a 3-day hospital stay. Either of those events is not something I want to experience. I have been treated with a statin drug for high cholesterol for almost nine years now, so I wouldn't be surprised if they find plaque buildup. The cardio doc said I won't be put completely out for the procedure they just localize the entry area of the groin where the tubing goes in. And he said normally they give the patient a sedative but he said he was afraid to give me a sedative because of my lung disease, I'm thinking so what! Just give the sedative with O2 and I'll be fine! I would be so thankful for anyone who can pray for me that all will go well. C_53_Familial IPF_5/09Washington From: Sher Bauman <bofus6 (AT) verizon (DOT) net>To: Breathe-Support@ yahoogroups. comSent: Wed, November 18, 2009 12:32:07 PMSubject: Re: hello friends ... 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. 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Guest guest Posted November 22, 2009 Report Share Posted November 22, 2009 Thanks Joyce, I know I don't need to worry and they told me the procedure was quick but the recovery time, like you said, takes a long time. If I need the flolan (or whatever it is) he said that would take a few hours to prepare and give to me. So, I guess I should plan on being there most of the day? Did they give you any sedation? C_53_Familial IPF_5/09Washington To: Breathe-Support Sent: Sun, November 22, 2009 3:58:21 PMSubject: Re: RH Catheterization i was terrified of the cardiac cath == it turned out to be a piece of cake i didn't like have to lie flat on my back for several hours afterwords Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org From: worth <hope2thend (AT) yahoo (DOT) com>Subject: Re: RH CatheterizationTo: Breathe-Support@ yahoogroups. comDate: Sunday, November 22, 2009, 6:05 PM Wow, thanks for letting me know that Beth about the Cardio's regard to sedation. That would be frightening what you went through.. I think he said if I have the PH they would start this Flolan right then and there intraveneously, but then I would be on a pill form, like Viagra. Guess I'll know more that day. Thanks for your prayers, I'm trying not to be scared about it, just want it over-with. C_53_Familial IPF_5/09Washington From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sat, November 21, 2009 5:57:34 PMSubject: Re: RH Catheterization , Your cardiologists caution with regard to sedation is well founded. People with lung disease (especially restrictive lung disease) don't always respond well to sedation. It is best to approach it very carefully and perhaps avoid it if possible. My own experience with pre-op sedation prior to my lung biopsy was life threatening. With just the mild pre-op shot my respirations become so suppressed that I desatted in to the 70's on 3 liters of O2. I remember none of this but when I met with the anesthesiologist a few days later he was clearly shaken by what had happened. While we have members who have had sedation and do fine, it's just not something we can count on 100%. I'm interested in what they will do if the find pulmonary hypertension. You mentioned Flolan....is that a one time treatment they are talking about or would that be the med you are on permanantly? Deciding to use Flolan is a committment as it's generally given as a continuous infusion via a permanant indwelling catheter. I'm just curious if they've talked about it as a one time treatment and then switching you to something else or if they want you to be on the Flolan. Finally try not to be too nervous. So often the pressure can read high on the echo and then when they get an actual pressure measurement during the cath it's well within the normal range. Hopefully that will be the case with you. Please let us know. I will be thinking of you and praying for you! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: worth <hope2thend (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sat, November 21, 2009 8:28:49 PMSubject: Re: RH Catheterization & Sher, I am scheduled for a RH catheter this coming Tuesday, 11/24. The results of my Echo showed an elevated systolic pressure of 45 mmHg. The cardiologist who will be performing the procedure doesn't seem too concerned about the elevation, but Dr. Raghu at the UWMC thinks I do have Pulmonary Hypertension; he wants the results sent to him soon after the procedure. I'm scared too, but more so for what else they might find during the procedure. The cardio said if the pressure is high and hypertension is present they go ahead and treat it by running something called Flolan through an IV and then I would be put on daily medication.. In addition, if they find plaque buildup in the artery they will perform a balloon stint to repair and I would have to stay over in the hospital one night. If they find some other damage to my heart that would require a bypass they do that right then and there too and that would require a 3-day hospital stay. Either of those events is not something I want to experience. I have been treated with a statin drug for high cholesterol for almost nine years now, so I wouldn't be surprised if they find plaque buildup. The cardio doc said I won't be put completely out for the procedure they just localize the entry area of the groin where the tubing goes in. And he said normally they give the patient a sedative but he said he was afraid to give me a sedative because of my lung disease, I'm thinking so what! Just give the sedative with O2 and I'll be fine! I would be so thankful for anyone who can pray for me that all will go well. C_53_Familial IPF_5/09Washington From: Sher Bauman <bofus6 (AT) verizon (DOT) net>To: Breathe-Support@ yahoogroups.. comSent: Wed, November 18, 2009 12:32:07 PMSubject: Re: hello friends ... 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. 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Guest guest Posted November 22, 2009 Report Share Posted November 22, 2009 Thanks Sher! My procedure is scheduled EARLY 8am, they told me to be there at 7am. My Cardio doc performing the procedure told me to plan on taking the next day off from work. I'll let you know how it goes. C_53_Familial IPF_5/09Washington To: Breathe-Support Sent: Sun, November 22, 2009 12:24:27 PMSubject: Re: RH Catheterization  ... well we can darn sure pray for each other! I will be staying overnight mainly because the procedure is being done so late in the day and my cardio-gal knows how apprehensive I am and she suggested I do just to feel better. She said I will be sedated so that makes me feel better too. Dr Raghu is also the one who wanted the RHC done, he does think I have PH and by gosh the echo showed "mild" PH. I feel so much more confident about my care with Raghu at the wheel. I will be thinking about 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...
Guest guest Posted November 22, 2009 Report Share Posted November 22, 2009 no sedation someone had to drive me home Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: RH CatheterizationTo: Breathe-Support Date: Sunday, November 22, 2009, 7:35 PM Thanks Joyce, I know I don't need to worry and they told me the procedure was quick but the recovery time, like you said, takes a long time. If I need the flolan (or whatever it is) he said that would take a few hours to prepare and give to me. So, I guess I should plan on being there most of the day? Did they give you any sedation? C_53_Familial IPF_5/09Washington From: Joyce T Rosenberg <pinkrockybeach@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Sun, November 22, 2009 3:58:21 PMSubject: Re: RH Catheterization i was terrified of the cardiac cath == it turned out to be a piece of cake i didn't like have to lie flat on my back for several hours afterwords Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org From: worth <hope2thend (AT) yahoo (DOT) com>Subject: Re: RH CatheterizationTo: Breathe-Support@ yahoogroups. comDate: Sunday, November 22, 2009, 6:05 PM Wow, thanks for letting me know that Beth about the Cardio's regard to sedation. That would be frightening what you went through.. I think he said if I have the PH they would start this Flolan right then and there intraveneously, but then I would be on a pill form, like Viagra. Guess I'll know more that day. Thanks for your prayers, I'm trying not to be scared about it, just want it over-with. C_53_Familial IPF_5/09Washington From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sat, November 21, 2009 5:57:34 PMSubject: Re: RH Catheterization , Your cardiologists caution with regard to sedation is well founded. People with lung disease (especially restrictive lung disease) don't always respond well to sedation. It is best to approach it very carefully and perhaps avoid it if possible. My own experience with pre-op sedation prior to my lung biopsy was life threatening. With just the mild pre-op shot my respirations become so suppressed that I desatted in to the 70's on 3 liters of O2. I remember none of this but when I met with the anesthesiologist a few days later he was clearly shaken by what had happened. While we have members who have had sedation and do fine, it's just not something we can count on 100%. I'm interested in what they will do if the find pulmonary hypertension. You mentioned Flolan....is that a one time treatment they are talking about or would that be the med you are on permanantly? Deciding to use Flolan is a committment as it's generally given as a continuous infusion via a permanant indwelling catheter. I'm just curious if they've talked about it as a one time treatment and then switching you to something else or if they want you to be on the Flolan. Finally try not to be too nervous. So often the pressure can read high on the echo and then when they get an actual pressure measurement during the cath it's well within the normal range. Hopefully that will be the case with you. Please let us know. I will be thinking of you and praying for you! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: worth <hope2thend (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sat, November 21, 2009 8:28:49 PMSubject: Re: RH Catheterization & Sher, I am scheduled for a RH catheter this coming Tuesday, 11/24. The results of my Echo showed an elevated systolic pressure of 45 mmHg. The cardiologist who will be performing the procedure doesn't seem too concerned about the elevation, but Dr. Raghu at the UWMC thinks I do have Pulmonary Hypertension; he wants the results sent to him soon after the procedure. I'm scared too, but more so for what else they might find during the procedure. The cardio said if the pressure is high and hypertension is present they go ahead and treat it by running something called Flolan through an IV and then I would be put on daily medication.. In addition, if they find plaque buildup in the artery they will perform a balloon stint to repair and I would have to stay over in the hospital one night. If they find some other damage to my heart that would require a bypass they do that right then and there too and that would require a 3-day hospital stay. Either of those events is not something I want to experience. I have been treated with a statin drug for high cholesterol for almost nine years now, so I wouldn't be surprised if they find plaque buildup. The cardio doc said I won't be put completely out for the procedure they just localize the entry area of the groin where the tubing goes in. And he said normally they give the patient a sedative but he said he was afraid to give me a sedative because of my lung disease, I'm thinking so what! Just give the sedative with O2 and I'll be fine! I would be so thankful for anyone who can pray for me that all will go well. C_53_Familial IPF_5/09Washington From: Sher Bauman <bofus6 (AT) verizon (DOT) net>To: Breathe-Support@ yahoogroups. . comSent: Wed, November 18, 2009 12:32:07 PMSubject: Re: hello friends ... 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. 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Guest guest Posted November 22, 2009 Report Share Posted November 22, 2009 ,Good thoughts are with you for you heart cath. Hopefully it will turn out ok, but I've got everything crossed that can be.Kathy IPF 10/09 Type 2 diabetes forever agoSubject: Re: RH CatheterizationTo: Breathe-Support Date: Sunday, November 22, 2009, 4:38 PM Thanks Sher! My procedure is scheduled EARLY 8am, they told me to be there at 7am. My Cardio doc performing the procedure told me to plan on taking the next day off from work. I'll let you know how it goes. C_53_Familial IPF_5/09Washington From: Sher Bauman <bofus6 (AT) verizon (DOT) net>To: Breathe-Support@ yahoogroups. comSent: Sun, November 22, 2009 12:24:27 PMSubject: Re: RH Catheterization  ... well we can darn sure pray for each other! I will be staying overnight mainly because the procedure is being done so late in the day and my cardio-gal knows how apprehensive I am and she suggested I do just to feel better. She said I will be sedated so that makes me feel better too. Dr Raghu is also the one who wanted the RHC done, he does think I have PH and by gosh the echo showed "mild" PH. I feel so much more confident about my care with Raghu at the wheel. I will be thinking about 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...
Guest guest Posted November 23, 2009 Report Share Posted November 23, 2009 Dear , I'll be praying for the absolute best result and care from everyone involved in this procedure.God bless you!PJ in OH, 54 IPF 09, Sjogrens 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 23, 2009 Report Share Posted November 23, 2009 My prayers are with you . May the procedure go on smoothly and not cause any problems or pain to you!! Geeta > >  & Sher, > I am scheduled for a RH catheter this coming Tuesday, 11/24. The results of my Echo showed an elevated systolic pressure of 45 mmHg. The cardiologist who will be performing the procedure doesn't seem too concerned about the elevation, but Dr. Raghu at the UWMC thinks I do have Pulmonary Hypertension; he wants the results sent to him soon after the procedure. > > I'm scared too, but more so for what else they might find during the procedure. The cardio said if the pressure is high and hypertension is present they go ahead and treat it by running something called Flolan through an IV and then I would be put on daily medication.  In addition, if they find plaque buildup in the artery they will perform a balloon stint to repair and I would have to stay over in the hospital one night. If they find some other damage to my heart that would require a bypass they do that right then and there too and that would require a 3-day hospital stay. Either of those events is not something I want to experience. I have been treated with a statin drug for high cholesterol for almost nine years now, so I wouldn't be surprised if they find plaque buildup. > The cardio doc said I won't be put completely out for the procedure they just localize the entry area of the groin where the tubing goes in. And he said normally they give the patient a sedative but he said he was afraid to give me a sedative because of my lung disease, I'm thinking so what! Just give the sedative with O2 and I'll be fine! > > I would be so thankful for anyone who can pray for me that all will go well. >  C_53_Familial IPF_5/09 > Washington > > > > > > ________________________________ > > To: Breathe-Support > Sent: Wed, November 18, 2009 12:32:07 PM > Subject: Re: hello friends > >  > ... 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 25, 2009 Report Share Posted November 25, 2009 Thanks Joyce. I'll let you know. AB To: Breathe-Support Sent: Sun, November 22, 2009 6:54:47 PMSubject: Re: RH Catheterization Adrienne if you have one, let me know if you need anyone to go with you or help in some way Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org From: Adrienne Bishop <eggie5909 (AT) yahoo (DOT) com>Subject: Re: RH CatheterizationTo: Breathe-Support@ yahoogroups. comDate: Sunday, November 22, 2009, 5:48 PM , I will certainly say a prayer for you and wish you well. I may have to have one as well so I'll be anxious to hear how you did. Adrienne From: worth <hope2thend (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sat, November 21, 2009 8:28:49 PMSubject: Re: RH Catheterization & Sher, I am scheduled for a RH catheter this coming Tuesday, 11/24. The results of my Echo showed an elevated systolic pressure of 45 mmHg. The cardiologist who will be performing the procedure doesn't seem too concerned about the elevation, but Dr. Raghu at the UWMC thinks I do have Pulmonary Hypertension; he wants the results sent to him soon after the procedure. I'm scared too, but more so for what else they might find during the procedure. The cardio said if the pressure is high and hypertension is present they go ahead and treat it by running something called Flolan through an IV and then I would be put on daily medication.. In addition, if they find plaque buildup in the artery they will perform a balloon stint to repair and I would have to stay over in the hospital one night. If they find some other damage to my heart that would require a bypass they do that right then and there too and that would require a 3-day hospital stay.. Either of those events is not something I want to experience. I have been treated with a statin drug for high cholesterol for almost nine years now, so I wouldn't be surprised if they find plaque buildup. The cardio doc said I won't be put completely out for the procedure they just localize the entry area of the groin where the tubing goes in. And he said normally they give the patient a sedative but he said he was afraid to give me a sedative because of my lung disease, I'm thinking so what! Just give the sedative with O2 and I'll be fine! I would be so thankful for anyone who can pray for me that all will go well. C_53_Familial IPF_5/09Washington From: Sher Bauman <bofus6 (AT) verizon (DOT) net>To: Breathe-Support@ yahoogroups. comSent: Wed, November 18, 2009 12:32:07 PMSubject: Re: hello friends ... 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. 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