Guest guest Posted July 15, 2004 Report Share Posted July 15, 2004 Could someone please tell me when this particular ride stops as I'd really like to get off for a while. This week has just been a completely nightmare starting with my Mum smashing her foot, then my crazy hip dislocation and finally today's rather shell shocking events. It's a long story but I will try to keep it brief I promise...I just need somewhere to spill my guts out after a hellish day. I suppose in all honesty it started last night as I had a run of very painful irregular heart beats followed by 20 minutes of extreme tachycardia whilst soaking in the bath - I have had them before so didn't really think anything of it especially when it wore off. This morning however following an outpatient appointment in my local hospital, I was hobbling along the corridor when I was floored by a horrendous chest pain and extreme dizziness. I literally slid down the wall as a passer by caught me and shouted for some help. Five minutes later I am hooked up to every monitor possible in ER, chucking out SVT's all over the place and posting a pulse oxygen level of just 85%. I was struggling to breath even on 100% oxygen, making the doctors extremely concerned. After several attempts at carotid massage my heart beat regulated but the rate was still fluctuating from lows of 60 up to 130 in seconds and my oxygen sats plummeted as soon as the oxygen was removed due to my laboured breathing. I was sent for a chest x-ray which had the docs in yet another flap as they told me they thought I had air around my heart!! Then a cardiologist was called and his first instinct was that I had started to dissect my aorta....welcome to how terrify a mutant in two easy steps. I was admitted to the cardiac care ward for closer monitoring and after much probing and prodding they are pretty sure neither of these has actually happened, but want me to get my artic root size measured again to check for any dilation due to my Marfan factors. My heart rate gradually stabilised during the scary and busy afternoon, as thankfully did my pulse ox which is now steadily at 98%, but the cardiologist are still very worried and very puzzled as to what is going on, especially as my blood pressure was so low it didn't even register at one point. The upshot is that I have to have even more tests, including repeat halter monitor, echo and tilt table plus referrals to the cardiology department to try and finally get to the bottom of my weird heart rate as my blacking out and collapsing has really spooked everyone. As you've probably gathered from the fact I'm writing this, I was eventually although reluctantly allowed home on the promise I take strict bed rest and have the cardiologists beeper number on hand should my SVT or breathlessness begin again during the night. I hope to God it doesn't as I have never been so frightened in all my life. I guess I'm going to get plenty of chance to rest my hip though! Trouble is I really can't afford to rest up like this as I need to help my Mum. I swear I will be glad when this week/month/year is over with as it's just one thing after another at the moment. But I guess the only way to get through it is to keep smiling and finding the funny side of things as I always try to. I have to admit that it was actually amusing and reassuring today to know that I have a heart, even if it a little mischievous by the looks of things. I shouldn't really be surprised that I have naughty heart though should I? ;-) Take care all and I hope you are having considerably better days and week. Thinking of you all and sending apologies if I can't be around as much as I'd like right now. Love and hugs.....Jo xxx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2004 Report Share Posted July 15, 2004 Jo I am so sorry you are going through this, you must have been so terribly frightened...I know I would have been. Please take care of yourself, rest up. My thoughts & prayers are with you. Betty Where does it all end? > Could someone please tell me when this particular ride stops as I'd > really like to get off for a while. This week has just been a > completely nightmare starting with my Mum smashing her foot, then my > crazy hip dislocation and finally today's rather shell shocking > events. It's a long story but I will try to keep it brief I > promise...I just need somewhere to spill my guts out after a hellish > day. > > I suppose in all honesty it started last night as I had a run of > very painful irregular heart beats followed by 20 minutes of extreme > tachycardia whilst soaking in the bath - I have had them before so > didn't really think anything of it especially when it wore off. This > morning however following an outpatient appointment in my local > hospital, I was hobbling along the corridor when I was floored by a > horrendous chest pain and extreme dizziness. I literally slid down > the wall as a passer by caught me and shouted for some help. Five > minutes later I am hooked up to every monitor possible in ER, > chucking out SVT's all over the place and posting a pulse oxygen > level of just 85%. > > I was struggling to breath even on 100% oxygen, making the doctors > extremely concerned. After several attempts at carotid massage my > heart beat regulated but the rate was still fluctuating from lows of > 60 up to 130 in seconds and my oxygen sats plummeted as soon as the > oxygen was removed due to my laboured breathing. I was sent for a > chest x-ray which had the docs in yet another flap as they told me > they thought I had air around my heart!! Then a cardiologist was > called and his first instinct was that I had started to dissect my > aorta....welcome to how terrify a mutant in two easy steps. > > I was admitted to the cardiac care ward for closer monitoring and > after much probing and prodding they are pretty sure neither of > these has actually happened, but want me to get my artic root size > measured again to check for any dilation due to my Marfan factors. > My heart rate gradually stabilised during the scary and busy > afternoon, as thankfully did my pulse ox which is now steadily at > 98%, but the cardiologist are still very worried and very puzzled as > to what is going on, especially as my blood pressure was so low it > didn't even register at one point. The upshot is that I have to have > even more tests, including repeat halter monitor, echo and tilt > table plus referrals to the cardiology department to try and finally > get to the bottom of my weird heart rate as my blacking out and > collapsing has really spooked everyone. > > As you've probably gathered from the fact I'm writing this, I was > eventually although reluctantly allowed home on the promise I take > strict bed rest and have the cardiologists beeper number on hand > should my SVT or breathlessness begin again during the night. I hope > to God it doesn't as I have never been so frightened in all my life. > I guess I'm going to get plenty of chance to rest my hip though! > Trouble is I really can't afford to rest up like this as I need to > help my Mum. I swear I will be glad when this week/month/year is > over with as it's just one thing after another at the moment. > > But I guess the only way to get through it is to keep smiling and > finding the funny side of things as I always try to. I have to admit > that it was actually amusing and reassuring today to know that I > have a heart, even if it a little mischievous by the looks of > things. I shouldn't really be surprised that I have naughty heart > though should I? ;-) > > Take care all and I hope you are having considerably better days and > week. Thinking of you all and sending apologies if I can't be around > as much as I'd like right now. > > Love and hugs.....Jo > xxx > > > > > To learn more about EDS, visit our website: http://www.ehlersdanlos.ca > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2004 Report Share Posted July 15, 2004 Jo I am so sorry you are going through this, you must have been so terribly frightened...I know I would have been. Please take care of yourself, rest up. My thoughts & prayers are with you. Betty Where does it all end? > Could someone please tell me when this particular ride stops as I'd > really like to get off for a while. This week has just been a > completely nightmare starting with my Mum smashing her foot, then my > crazy hip dislocation and finally today's rather shell shocking > events. It's a long story but I will try to keep it brief I > promise...I just need somewhere to spill my guts out after a hellish > day. > > I suppose in all honesty it started last night as I had a run of > very painful irregular heart beats followed by 20 minutes of extreme > tachycardia whilst soaking in the bath - I have had them before so > didn't really think anything of it especially when it wore off. This > morning however following an outpatient appointment in my local > hospital, I was hobbling along the corridor when I was floored by a > horrendous chest pain and extreme dizziness. I literally slid down > the wall as a passer by caught me and shouted for some help. Five > minutes later I am hooked up to every monitor possible in ER, > chucking out SVT's all over the place and posting a pulse oxygen > level of just 85%. > > I was struggling to breath even on 100% oxygen, making the doctors > extremely concerned. After several attempts at carotid massage my > heart beat regulated but the rate was still fluctuating from lows of > 60 up to 130 in seconds and my oxygen sats plummeted as soon as the > oxygen was removed due to my laboured breathing. I was sent for a > chest x-ray which had the docs in yet another flap as they told me > they thought I had air around my heart!! Then a cardiologist was > called and his first instinct was that I had started to dissect my > aorta....welcome to how terrify a mutant in two easy steps. > > I was admitted to the cardiac care ward for closer monitoring and > after much probing and prodding they are pretty sure neither of > these has actually happened, but want me to get my artic root size > measured again to check for any dilation due to my Marfan factors. > My heart rate gradually stabilised during the scary and busy > afternoon, as thankfully did my pulse ox which is now steadily at > 98%, but the cardiologist are still very worried and very puzzled as > to what is going on, especially as my blood pressure was so low it > didn't even register at one point. The upshot is that I have to have > even more tests, including repeat halter monitor, echo and tilt > table plus referrals to the cardiology department to try and finally > get to the bottom of my weird heart rate as my blacking out and > collapsing has really spooked everyone. > > As you've probably gathered from the fact I'm writing this, I was > eventually although reluctantly allowed home on the promise I take > strict bed rest and have the cardiologists beeper number on hand > should my SVT or breathlessness begin again during the night. I hope > to God it doesn't as I have never been so frightened in all my life. > I guess I'm going to get plenty of chance to rest my hip though! > Trouble is I really can't afford to rest up like this as I need to > help my Mum. I swear I will be glad when this week/month/year is > over with as it's just one thing after another at the moment. > > But I guess the only way to get through it is to keep smiling and > finding the funny side of things as I always try to. I have to admit > that it was actually amusing and reassuring today to know that I > have a heart, even if it a little mischievous by the looks of > things. I shouldn't really be surprised that I have naughty heart > though should I? ;-) > > Take care all and I hope you are having considerably better days and > week. Thinking of you all and sending apologies if I can't be around > as much as I'd like right now. > > Love and hugs.....Jo > xxx > > > > > To learn more about EDS, visit our website: http://www.ehlersdanlos.ca > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2004 Report Share Posted July 15, 2004 Oh Jo - How terrible and frightening a day you have had!! Please, please rest and take care of yourself. Before I had my heart attack, I had an episode where the ER could not get a BP on me, and my pulse was all over the place. But it eventually straightened itself out. So just do what your cardiologist says and, tho I know it's hard, put up with all the tests they want to do. Then they can find out just what is going on and, hopefully, do something to help. Know that you are in my thoughts and prayers. Rest well. Love, Patti PS I hope your mom's foot is better soon. Where does it all end? Could someone please tell me when this particular ride stops as I'd really like to get off for a while. This week has just been a completely nightmare starting with my Mum smashing her foot, then my crazy hip dislocation and finally today's rather shell shocking events. It's a long story but I will try to keep it brief I promise...I just need somewhere to spill my guts out after a hellish day. I suppose in all honesty it started last night as I had a run of very painful irregular heart beats followed by 20 minutes of extreme tachycardia whilst soaking in the bath - I have had them before so didn't really think anything of it especially when it wore off. This morning however following an outpatient appointment in my local hospital, I was hobbling along the corridor when I was floored by a horrendous chest pain and extreme dizziness. I literally slid down the wall as a passer by caught me and shouted for some help. Five minutes later I am hooked up to every monitor possible in ER, chucking out SVT's all over the place and posting a pulse oxygen level of just 85%. I was struggling to breath even on 100% oxygen, making the doctors extremely concerned. After several attempts at carotid massage my heart beat regulated but the rate was still fluctuating from lows of 60 up to 130 in seconds and my oxygen sats plummeted as soon as the oxygen was removed due to my laboured breathing. I was sent for a chest x-ray which had the docs in yet another flap as they told me they thought I had air around my heart!! Then a cardiologist was called and his first instinct was that I had started to dissect my aorta....welcome to how terrify a mutant in two easy steps. I was admitted to the cardiac care ward for closer monitoring and after much probing and prodding they are pretty sure neither of these has actually happened, but want me to get my artic root size measured again to check for any dilation due to my Marfan factors. My heart rate gradually stabilised during the scary and busy afternoon, as thankfully did my pulse ox which is now steadily at 98%, but the cardiologist are still very worried and very puzzled as to what is going on, especially as my blood pressure was so low it didn't even register at one point. The upshot is that I have to have even more tests, including repeat halter monitor, echo and tilt table plus referrals to the cardiology department to try and finally get to the bottom of my weird heart rate as my blacking out and collapsing has really spooked everyone. As you've probably gathered from the fact I'm writing this, I was eventually although reluctantly allowed home on the promise I take strict bed rest and have the cardiologists beeper number on hand should my SVT or breathlessness begin again during the night. I hope to God it doesn't as I have never been so frightened in all my life. I guess I'm going to get plenty of chance to rest my hip though! Trouble is I really can't afford to rest up like this as I need to help my Mum. I swear I will be glad when this week/month/year is over with as it's just one thing after another at the moment. But I guess the only way to get through it is to keep smiling and finding the funny side of things as I always try to. I have to admit that it was actually amusing and reassuring today to know that I have a heart, even if it a little mischievous by the looks of things. I shouldn't really be surprised that I have naughty heart though should I? ;-) Take care all and I hope you are having considerably better days and week. Thinking of you all and sending apologies if I can't be around as much as I'd like right now. Love and hugs.....Jo xxx To learn more about EDS, visit our website: http://www.ehlersdanlos.ca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2004 Report Share Posted July 15, 2004 Oh Jo - How terrible and frightening a day you have had!! Please, please rest and take care of yourself. Before I had my heart attack, I had an episode where the ER could not get a BP on me, and my pulse was all over the place. But it eventually straightened itself out. So just do what your cardiologist says and, tho I know it's hard, put up with all the tests they want to do. Then they can find out just what is going on and, hopefully, do something to help. Know that you are in my thoughts and prayers. Rest well. Love, Patti PS I hope your mom's foot is better soon. Where does it all end? Could someone please tell me when this particular ride stops as I'd really like to get off for a while. This week has just been a completely nightmare starting with my Mum smashing her foot, then my crazy hip dislocation and finally today's rather shell shocking events. It's a long story but I will try to keep it brief I promise...I just need somewhere to spill my guts out after a hellish day. I suppose in all honesty it started last night as I had a run of very painful irregular heart beats followed by 20 minutes of extreme tachycardia whilst soaking in the bath - I have had them before so didn't really think anything of it especially when it wore off. This morning however following an outpatient appointment in my local hospital, I was hobbling along the corridor when I was floored by a horrendous chest pain and extreme dizziness. I literally slid down the wall as a passer by caught me and shouted for some help. Five minutes later I am hooked up to every monitor possible in ER, chucking out SVT's all over the place and posting a pulse oxygen level of just 85%. I was struggling to breath even on 100% oxygen, making the doctors extremely concerned. After several attempts at carotid massage my heart beat regulated but the rate was still fluctuating from lows of 60 up to 130 in seconds and my oxygen sats plummeted as soon as the oxygen was removed due to my laboured breathing. I was sent for a chest x-ray which had the docs in yet another flap as they told me they thought I had air around my heart!! Then a cardiologist was called and his first instinct was that I had started to dissect my aorta....welcome to how terrify a mutant in two easy steps. I was admitted to the cardiac care ward for closer monitoring and after much probing and prodding they are pretty sure neither of these has actually happened, but want me to get my artic root size measured again to check for any dilation due to my Marfan factors. My heart rate gradually stabilised during the scary and busy afternoon, as thankfully did my pulse ox which is now steadily at 98%, but the cardiologist are still very worried and very puzzled as to what is going on, especially as my blood pressure was so low it didn't even register at one point. The upshot is that I have to have even more tests, including repeat halter monitor, echo and tilt table plus referrals to the cardiology department to try and finally get to the bottom of my weird heart rate as my blacking out and collapsing has really spooked everyone. As you've probably gathered from the fact I'm writing this, I was eventually although reluctantly allowed home on the promise I take strict bed rest and have the cardiologists beeper number on hand should my SVT or breathlessness begin again during the night. I hope to God it doesn't as I have never been so frightened in all my life. I guess I'm going to get plenty of chance to rest my hip though! Trouble is I really can't afford to rest up like this as I need to help my Mum. I swear I will be glad when this week/month/year is over with as it's just one thing after another at the moment. But I guess the only way to get through it is to keep smiling and finding the funny side of things as I always try to. I have to admit that it was actually amusing and reassuring today to know that I have a heart, even if it a little mischievous by the looks of things. I shouldn't really be surprised that I have naughty heart though should I? ;-) Take care all and I hope you are having considerably better days and week. Thinking of you all and sending apologies if I can't be around as much as I'd like right now. Love and hugs.....Jo xxx To learn more about EDS, visit our website: http://www.ehlersdanlos.ca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2004 Report Share Posted July 15, 2004 Oh Jo! I am so sorry for such a day. Oh my word! As I was reading I could not believe that they let you go home. Please rest and do what you know to be best for you. I will keep you in my prayers. Debbi Where does it all end? Could someone please tell me when this particular ride stops as I'd really like to get off for a while. This week has just been a completely nightmare starting with my Mum smashing her foot, then my crazy hip dislocation and finally today's rather shell shocking events. It's a long story but I will try to keep it brief I promise...I just need somewhere to spill my guts out after a hellish day. I suppose in all honesty it started last night as I had a run of very painful irregular heart beats followed by 20 minutes of extreme tachycardia whilst soaking in the bath - I have had them before so didn't really think anything of it especially when it wore off. This morning however following an outpatient appointment in my local hospital, I was hobbling along the corridor when I was floored by a horrendous chest pain and extreme dizziness. I literally slid down the wall as a passer by caught me and shouted for some help. Five minutes later I am hooked up to every monitor possible in ER, chucking out SVT's all over the place and posting a pulse oxygen level of just 85%. I was struggling to breath even on 100% oxygen, making the doctors extremely concerned. After several attempts at carotid massage my heart beat regulated but the rate was still fluctuating from lows of 60 up to 130 in seconds and my oxygen sats plummeted as soon as the oxygen was removed due to my laboured breathing. I was sent for a chest x-ray which had the docs in yet another flap as they told me they thought I had air around my heart!! Then a cardiologist was called and his first instinct was that I had started to dissect my aorta....welcome to how terrify a mutant in two easy steps. I was admitted to the cardiac care ward for closer monitoring and after much probing and prodding they are pretty sure neither of these has actually happened, but want me to get my artic root size measured again to check for any dilation due to my Marfan factors. My heart rate gradually stabilised during the scary and busy afternoon, as thankfully did my pulse ox which is now steadily at 98%, but the cardiologist are still very worried and very puzzled as to what is going on, especially as my blood pressure was so low it didn't even register at one point. The upshot is that I have to have even more tests, including repeat halter monitor, echo and tilt table plus referrals to the cardiology department to try and finally get to the bottom of my weird heart rate as my blacking out and collapsing has really spooked everyone. As you've probably gathered from the fact I'm writing this, I was eventually although reluctantly allowed home on the promise I take strict bed rest and have the cardiologists beeper number on hand should my SVT or breathlessness begin again during the night. I hope to God it doesn't as I have never been so frightened in all my life. I guess I'm going to get plenty of chance to rest my hip though! Trouble is I really can't afford to rest up like this as I need to help my Mum. I swear I will be glad when this week/month/year is over with as it's just one thing after another at the moment. But I guess the only way to get through it is to keep smiling and finding the funny side of things as I always try to. I have to admit that it was actually amusing and reassuring today to know that I have a heart, even if it a little mischievous by the looks of things. I shouldn't really be surprised that I have naughty heart though should I? ;-) Take care all and I hope you are having considerably better days and week. Thinking of you all and sending apologies if I can't be around as much as I'd like right now. Love and hugs.....Jo xxx To learn more about EDS, visit our website: http://www.ehlersdanlos.ca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2004 Report Share Posted July 15, 2004 Oh Jo! I am so sorry for such a day. Oh my word! As I was reading I could not believe that they let you go home. Please rest and do what you know to be best for you. I will keep you in my prayers. Debbi Where does it all end? Could someone please tell me when this particular ride stops as I'd really like to get off for a while. This week has just been a completely nightmare starting with my Mum smashing her foot, then my crazy hip dislocation and finally today's rather shell shocking events. It's a long story but I will try to keep it brief I promise...I just need somewhere to spill my guts out after a hellish day. I suppose in all honesty it started last night as I had a run of very painful irregular heart beats followed by 20 minutes of extreme tachycardia whilst soaking in the bath - I have had them before so didn't really think anything of it especially when it wore off. This morning however following an outpatient appointment in my local hospital, I was hobbling along the corridor when I was floored by a horrendous chest pain and extreme dizziness. I literally slid down the wall as a passer by caught me and shouted for some help. Five minutes later I am hooked up to every monitor possible in ER, chucking out SVT's all over the place and posting a pulse oxygen level of just 85%. I was struggling to breath even on 100% oxygen, making the doctors extremely concerned. After several attempts at carotid massage my heart beat regulated but the rate was still fluctuating from lows of 60 up to 130 in seconds and my oxygen sats plummeted as soon as the oxygen was removed due to my laboured breathing. I was sent for a chest x-ray which had the docs in yet another flap as they told me they thought I had air around my heart!! Then a cardiologist was called and his first instinct was that I had started to dissect my aorta....welcome to how terrify a mutant in two easy steps. I was admitted to the cardiac care ward for closer monitoring and after much probing and prodding they are pretty sure neither of these has actually happened, but want me to get my artic root size measured again to check for any dilation due to my Marfan factors. My heart rate gradually stabilised during the scary and busy afternoon, as thankfully did my pulse ox which is now steadily at 98%, but the cardiologist are still very worried and very puzzled as to what is going on, especially as my blood pressure was so low it didn't even register at one point. The upshot is that I have to have even more tests, including repeat halter monitor, echo and tilt table plus referrals to the cardiology department to try and finally get to the bottom of my weird heart rate as my blacking out and collapsing has really spooked everyone. As you've probably gathered from the fact I'm writing this, I was eventually although reluctantly allowed home on the promise I take strict bed rest and have the cardiologists beeper number on hand should my SVT or breathlessness begin again during the night. I hope to God it doesn't as I have never been so frightened in all my life. I guess I'm going to get plenty of chance to rest my hip though! Trouble is I really can't afford to rest up like this as I need to help my Mum. I swear I will be glad when this week/month/year is over with as it's just one thing after another at the moment. But I guess the only way to get through it is to keep smiling and finding the funny side of things as I always try to. I have to admit that it was actually amusing and reassuring today to know that I have a heart, even if it a little mischievous by the looks of things. I shouldn't really be surprised that I have naughty heart though should I? ;-) Take care all and I hope you are having considerably better days and week. Thinking of you all and sending apologies if I can't be around as much as I'd like right now. Love and hugs.....Jo xxx To learn more about EDS, visit our website: http://www.ehlersdanlos.ca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2004 Report Share Posted July 15, 2004 Oh Jo I am soooooo sorry!!! Sending you lots of hugs and the biggest shoulder ever to cry on. I say that you, me and rhea take an hour this weekend (prefereably sunday or monday for me) and just have an online b*tch session! Maybe you should try a journal too. I got rhea on now just have to convert you It may help get out some of your frustrations, I know mine does. Anyways about the heart problems, we all know that your heart is just perfect in the 'right' way. Your caring and compassion show all of us that already! I can understand how terrifying that would be though. I got freaked out the other night (and tonight) when I all of a sudden just got really really shaky (pulse rate was in the high 120's) to pass out would really freak me out. Do what the doctor says and STAY IN BED AND REST I order you too! I know that you can still get on your laptop and wireless connection to come on and still stay resting!! So dont you be using us an excuse to get out of bed Dont worry to much about your mom. Why not devote some time a day to have a 'rest' time as I am sure she needs it with her foot too. Just play cards or talk or anything realy, I am sure she would enjoy it. And dont worry about not being able to 'pay her back' for all she has done for you (I know how you think! ) I am sure she wants you resting right now just as much as the rest of us do! Stacey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2004 Report Share Posted July 15, 2004 Oh Jo I am soooooo sorry!!! Sending you lots of hugs and the biggest shoulder ever to cry on. I say that you, me and rhea take an hour this weekend (prefereably sunday or monday for me) and just have an online b*tch session! Maybe you should try a journal too. I got rhea on now just have to convert you It may help get out some of your frustrations, I know mine does. Anyways about the heart problems, we all know that your heart is just perfect in the 'right' way. Your caring and compassion show all of us that already! I can understand how terrifying that would be though. I got freaked out the other night (and tonight) when I all of a sudden just got really really shaky (pulse rate was in the high 120's) to pass out would really freak me out. Do what the doctor says and STAY IN BED AND REST I order you too! I know that you can still get on your laptop and wireless connection to come on and still stay resting!! So dont you be using us an excuse to get out of bed Dont worry to much about your mom. Why not devote some time a day to have a 'rest' time as I am sure she needs it with her foot too. Just play cards or talk or anything realy, I am sure she would enjoy it. And dont worry about not being able to 'pay her back' for all she has done for you (I know how you think! ) I am sure she wants you resting right now just as much as the rest of us do! Stacey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2004 Report Share Posted July 15, 2004 So don't you be using us an excuse to get out of bed Yea! I second that. I should have said that before too! Lol! But really! Debbi Re: Where does it all end? Oh Jo I am soooooo sorry!!! Sending you lots of hugs and the biggest shoulder ever to cry on. I say that you, me and rhea take an hour this weekend (prefereably sunday or monday for me) and just have an online b*tch session! Maybe you should try a journal too. I got rhea on now just have to convert you It may help get out some of your frustrations, I know mine does. Anyways about the heart problems, we all know that your heart is just perfect in the 'right' way. Your caring and compassion show all of us that already! I can understand how terrifying that would be though. I got freaked out the other night (and tonight) when I all of a sudden just got really really shaky (pulse rate was in the high 120's) to pass out would really freak me out. Do what the doctor says and STAY IN BED AND REST I order you too! I know that you can still get on your laptop and wireless connection to come on and still stay resting!! So dont you be using us an excuse to get out of bed Dont worry to much about your mom. Why not devote some time a day to have a 'rest' time as I am sure she needs it with her foot too. Just play cards or talk or anything realy, I am sure she would enjoy it. And dont worry about not being able to 'pay her back' for all she has done for you (I know how you think! ) I am sure she wants you resting right now just as much as the rest of us do! Stacey To learn more about EDS, visit our website: http://www.ehlersdanlos.ca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2004 Report Share Posted July 15, 2004 So don't you be using us an excuse to get out of bed Yea! I second that. I should have said that before too! Lol! But really! Debbi Re: Where does it all end? Oh Jo I am soooooo sorry!!! Sending you lots of hugs and the biggest shoulder ever to cry on. I say that you, me and rhea take an hour this weekend (prefereably sunday or monday for me) and just have an online b*tch session! Maybe you should try a journal too. I got rhea on now just have to convert you It may help get out some of your frustrations, I know mine does. Anyways about the heart problems, we all know that your heart is just perfect in the 'right' way. Your caring and compassion show all of us that already! I can understand how terrifying that would be though. I got freaked out the other night (and tonight) when I all of a sudden just got really really shaky (pulse rate was in the high 120's) to pass out would really freak me out. Do what the doctor says and STAY IN BED AND REST I order you too! I know that you can still get on your laptop and wireless connection to come on and still stay resting!! So dont you be using us an excuse to get out of bed Dont worry to much about your mom. Why not devote some time a day to have a 'rest' time as I am sure she needs it with her foot too. Just play cards or talk or anything realy, I am sure she would enjoy it. And dont worry about not being able to 'pay her back' for all she has done for you (I know how you think! ) I am sure she wants you resting right now just as much as the rest of us do! Stacey To learn more about EDS, visit our website: http://www.ehlersdanlos.ca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2004 Report Share Posted July 16, 2004 OMG Jo, I hope you are OK, It sounds like now would be a good time to contact prof Bird and hurry your visit up to ASAP and get that done as well as he is the best source of information in your arsenal and could then give you and idea of what else you may expect or could expect in the future and be put on anything preventative that he knows about. I would have been SO SO SCARED (I was scared when they thought I was disecing my aorta but it turned out to be dyspepsia, GERD and a peptic ulcer but they had the transfusioin teams and OR on standby incase (I only found most of this out when I got my records a few weeks ago) they did tell me they were testing my aorta to make sure there were no problems becasue of my symptoms (which were all in my chest and at the bottom of my ribcage) and my EDS but I didn't realise how bad they thought it might have been or I would have beenVERY scared). I too havehad some weird turn but NOTHING like yours and these have scared me out of my wits and had me sitting with a phone on my lap and dialed to 000 (our emergency number for ambulances like 911) but not needed it. Good luck on the tests they are a good thing as they may get to the bottom of what is going on and why and what can be done to prevent further episodes. As to your Mum I am sure she is feeling better now that she has had the cast applied and I am POSITIVE she prefers you to rest and not have any further attacks of what ever it was that trying to help her. What about having a bed picnic together order insome yummy special food and have it delievered rent a movie or movies and sit on your bed together and eat and relax and watch movies and spend some quiet quality time together, I am SURE you would both enjoy this or you could do a day spa in bed put on a face mask, give each other a manicure (and pedicaure too if you wish) apply a hair mask too if you want and watcha chick flick (sappy girl movie). Try to thing of somthing fun your Mum and you enjoy togther that can be done while you are both relaxing and taking things easy and can be done from your bed (even if your Dad needs to put a TV and VCR/DVD player on a trolly and roll it into your room so that you can do this, then the following day you could do somethign with your dad as well and the 2 of you or all 3 of you could enjoy some quality quiet time together in your bedroom/ on your bed without making it too rough on you and stopping you from going stir crazy. (Invite some friend sover to brighten up your room, blow up ballons (NOT YOU) and add streamer and flowers and bright papers and things aroungd the room to make it fun and happy and bright and FUN and have a ball doing this (they say a change is as good as a holiday and if you have to stay in bed then you might as well enjoy the environment (it is amazing what you can do with bluetac, wrapping and other brigth papers and ribbons, balloons, streamers and flowers and such items that are not permanent and not damaging to the structures of your room and that can be changed frequently (what a bout a tropical feel (Hawaiiam holiday) and then later a jungle feel, an antarctic adventure (with penguins and seals and snowflakes and icebergs), you could even download some appropriate music or hire an apporopriate movies order in or have soem friend bring in some theme foods and have a tropicl etc adventure/party/ meal in bed (you could even dress up your PJ's etc to enjoy the feel, make a crepe paper grass skirt or tarzan suit etc), use that amazing imagination of yours and have fun, if you have to stay in bed and rest then you can at least enjoy it. Look after yourself my friend you are in my thoughts and prayers and I am thinking of you and sending you all of the healing thoughts and vibes I possibly can as you have been through so much since I first met you (in a virtual sense)... Sharon (Shazinoz) xxxx > Could someone please tell me when this particular ride stops as I'd > really like to get off for a while. This week has just been a > completely nightmare starting with my Mum smashing her foot, then my > crazy hip dislocation and finally today's rather shell shocking > events. It's a long story but I will try to keep it brief I > promise...I just need somewhere to spill my guts out after a hellish > day. > > I suppose in all honesty it started last night as I had a run of > very painful irregular heart beats followed by 20 minutes of extreme > tachycardia whilst soaking in the bath - I have had them before so > didn't really think anything of it especially when it wore off. This > morning however following an outpatient appointment in my local > hospital, I was hobbling along the corridor when I was floored by a > horrendous chest pain and extreme dizziness. I literally slid down > the wall as a passer by caught me and shouted for some help. Five > minutes later I am hooked up to every monitor possible in ER, > chucking out SVT's all over the place and posting a pulse oxygen > level of just 85%. > > I was struggling to breath even on 100% oxygen, making the doctors > extremely concerned. After several attempts at carotid massage my > heart beat regulated but the rate was still fluctuating from lows of > 60 up to 130 in seconds and my oxygen sats plummeted as soon as the > oxygen was removed due to my laboured breathing. I was sent for a > chest x-ray which had the docs in yet another flap as they told me > they thought I had air around my heart!! Then a cardiologist was > called and his first instinct was that I had started to dissect my > aorta....welcome to how terrify a mutant in two easy steps. > > I was admitted to the cardiac care ward for closer monitoring and > after much probing and prodding they are pretty sure neither of > these has actually happened, but want me to get my artic root size > measured again to check for any dilation due to my Marfan factors. > My heart rate gradually stabilised during the scary and busy > afternoon, as thankfully did my pulse ox which is now steadily at > 98%, but the cardiologist are still very worried and very puzzled as > to what is going on, especially as my blood pressure was so low it > didn't even register at one point. The upshot is that I have to have > even more tests, including repeat halter monitor, echo and tilt > table plus referrals to the cardiology department to try and finally > get to the bottom of my weird heart rate as my blacking out and > collapsing has really spooked everyone. > > As you've probably gathered from the fact I'm writing this, I was > eventually although reluctantly allowed home on the promise I take > strict bed rest and have the cardiologists beeper number on hand > should my SVT or breathlessness begin again during the night. I hope > to God it doesn't as I have never been so frightened in all my life. > I guess I'm going to get plenty of chance to rest my hip though! > Trouble is I really can't afford to rest up like this as I need to > help my Mum. I swear I will be glad when this week/month/year is > over with as it's just one thing after another at the moment. > > But I guess the only way to get through it is to keep smiling and > finding the funny side of things as I always try to. I have to admit > that it was actually amusing and reassuring today to know that I > have a heart, even if it a little mischievous by the looks of > things. I shouldn't really be surprised that I have naughty heart > though should I? ;-) > > Take care all and I hope you are having considerably better days and > week. Thinking of you all and sending apologies if I can't be around > as much as I'd like right now. > > Love and hugs.....Jo > xxx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2004 Report Share Posted July 16, 2004 OMG Jo, I hope you are OK, It sounds like now would be a good time to contact prof Bird and hurry your visit up to ASAP and get that done as well as he is the best source of information in your arsenal and could then give you and idea of what else you may expect or could expect in the future and be put on anything preventative that he knows about. I would have been SO SO SCARED (I was scared when they thought I was disecing my aorta but it turned out to be dyspepsia, GERD and a peptic ulcer but they had the transfusioin teams and OR on standby incase (I only found most of this out when I got my records a few weeks ago) they did tell me they were testing my aorta to make sure there were no problems becasue of my symptoms (which were all in my chest and at the bottom of my ribcage) and my EDS but I didn't realise how bad they thought it might have been or I would have beenVERY scared). I too havehad some weird turn but NOTHING like yours and these have scared me out of my wits and had me sitting with a phone on my lap and dialed to 000 (our emergency number for ambulances like 911) but not needed it. Good luck on the tests they are a good thing as they may get to the bottom of what is going on and why and what can be done to prevent further episodes. As to your Mum I am sure she is feeling better now that she has had the cast applied and I am POSITIVE she prefers you to rest and not have any further attacks of what ever it was that trying to help her. What about having a bed picnic together order insome yummy special food and have it delievered rent a movie or movies and sit on your bed together and eat and relax and watch movies and spend some quiet quality time together, I am SURE you would both enjoy this or you could do a day spa in bed put on a face mask, give each other a manicure (and pedicaure too if you wish) apply a hair mask too if you want and watcha chick flick (sappy girl movie). Try to thing of somthing fun your Mum and you enjoy togther that can be done while you are both relaxing and taking things easy and can be done from your bed (even if your Dad needs to put a TV and VCR/DVD player on a trolly and roll it into your room so that you can do this, then the following day you could do somethign with your dad as well and the 2 of you or all 3 of you could enjoy some quality quiet time together in your bedroom/ on your bed without making it too rough on you and stopping you from going stir crazy. (Invite some friend sover to brighten up your room, blow up ballons (NOT YOU) and add streamer and flowers and bright papers and things aroungd the room to make it fun and happy and bright and FUN and have a ball doing this (they say a change is as good as a holiday and if you have to stay in bed then you might as well enjoy the environment (it is amazing what you can do with bluetac, wrapping and other brigth papers and ribbons, balloons, streamers and flowers and such items that are not permanent and not damaging to the structures of your room and that can be changed frequently (what a bout a tropical feel (Hawaiiam holiday) and then later a jungle feel, an antarctic adventure (with penguins and seals and snowflakes and icebergs), you could even download some appropriate music or hire an apporopriate movies order in or have soem friend bring in some theme foods and have a tropicl etc adventure/party/ meal in bed (you could even dress up your PJ's etc to enjoy the feel, make a crepe paper grass skirt or tarzan suit etc), use that amazing imagination of yours and have fun, if you have to stay in bed and rest then you can at least enjoy it. Look after yourself my friend you are in my thoughts and prayers and I am thinking of you and sending you all of the healing thoughts and vibes I possibly can as you have been through so much since I first met you (in a virtual sense)... Sharon (Shazinoz) xxxx > Could someone please tell me when this particular ride stops as I'd > really like to get off for a while. This week has just been a > completely nightmare starting with my Mum smashing her foot, then my > crazy hip dislocation and finally today's rather shell shocking > events. It's a long story but I will try to keep it brief I > promise...I just need somewhere to spill my guts out after a hellish > day. > > I suppose in all honesty it started last night as I had a run of > very painful irregular heart beats followed by 20 minutes of extreme > tachycardia whilst soaking in the bath - I have had them before so > didn't really think anything of it especially when it wore off. This > morning however following an outpatient appointment in my local > hospital, I was hobbling along the corridor when I was floored by a > horrendous chest pain and extreme dizziness. I literally slid down > the wall as a passer by caught me and shouted for some help. Five > minutes later I am hooked up to every monitor possible in ER, > chucking out SVT's all over the place and posting a pulse oxygen > level of just 85%. > > I was struggling to breath even on 100% oxygen, making the doctors > extremely concerned. After several attempts at carotid massage my > heart beat regulated but the rate was still fluctuating from lows of > 60 up to 130 in seconds and my oxygen sats plummeted as soon as the > oxygen was removed due to my laboured breathing. I was sent for a > chest x-ray which had the docs in yet another flap as they told me > they thought I had air around my heart!! Then a cardiologist was > called and his first instinct was that I had started to dissect my > aorta....welcome to how terrify a mutant in two easy steps. > > I was admitted to the cardiac care ward for closer monitoring and > after much probing and prodding they are pretty sure neither of > these has actually happened, but want me to get my artic root size > measured again to check for any dilation due to my Marfan factors. > My heart rate gradually stabilised during the scary and busy > afternoon, as thankfully did my pulse ox which is now steadily at > 98%, but the cardiologist are still very worried and very puzzled as > to what is going on, especially as my blood pressure was so low it > didn't even register at one point. The upshot is that I have to have > even more tests, including repeat halter monitor, echo and tilt > table plus referrals to the cardiology department to try and finally > get to the bottom of my weird heart rate as my blacking out and > collapsing has really spooked everyone. > > As you've probably gathered from the fact I'm writing this, I was > eventually although reluctantly allowed home on the promise I take > strict bed rest and have the cardiologists beeper number on hand > should my SVT or breathlessness begin again during the night. I hope > to God it doesn't as I have never been so frightened in all my life. > I guess I'm going to get plenty of chance to rest my hip though! > Trouble is I really can't afford to rest up like this as I need to > help my Mum. I swear I will be glad when this week/month/year is > over with as it's just one thing after another at the moment. > > But I guess the only way to get through it is to keep smiling and > finding the funny side of things as I always try to. I have to admit > that it was actually amusing and reassuring today to know that I > have a heart, even if it a little mischievous by the looks of > things. I shouldn't really be surprised that I have naughty heart > though should I? ;-) > > Take care all and I hope you are having considerably better days and > week. Thinking of you all and sending apologies if I can't be around > as much as I'd like right now. > > Love and hugs.....Jo > xxx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2004 Report Share Posted July 16, 2004 OMG Jo, I hope you are OK, It sounds like now would be a good time to contact prof Bird and hurry your visit up to ASAP and get that done as well as he is the best source of information in your arsenal and could then give you and idea of what else you may expect or could expect in the future and be put on anything preventative that he knows about. I would have been SO SO SCARED (I was scared when they thought I was disecing my aorta but it turned out to be dyspepsia, GERD and a peptic ulcer but they had the transfusioin teams and OR on standby incase (I only found most of this out when I got my records a few weeks ago) they did tell me they were testing my aorta to make sure there were no problems becasue of my symptoms (which were all in my chest and at the bottom of my ribcage) and my EDS but I didn't realise how bad they thought it might have been or I would have beenVERY scared). I too havehad some weird turn but NOTHING like yours and these have scared me out of my wits and had me sitting with a phone on my lap and dialed to 000 (our emergency number for ambulances like 911) but not needed it. Good luck on the tests they are a good thing as they may get to the bottom of what is going on and why and what can be done to prevent further episodes. As to your Mum I am sure she is feeling better now that she has had the cast applied and I am POSITIVE she prefers you to rest and not have any further attacks of what ever it was that trying to help her. What about having a bed picnic together order insome yummy special food and have it delievered rent a movie or movies and sit on your bed together and eat and relax and watch movies and spend some quiet quality time together, I am SURE you would both enjoy this or you could do a day spa in bed put on a face mask, give each other a manicure (and pedicaure too if you wish) apply a hair mask too if you want and watcha chick flick (sappy girl movie). Try to thing of somthing fun your Mum and you enjoy togther that can be done while you are both relaxing and taking things easy and can be done from your bed (even if your Dad needs to put a TV and VCR/DVD player on a trolly and roll it into your room so that you can do this, then the following day you could do somethign with your dad as well and the 2 of you or all 3 of you could enjoy some quality quiet time together in your bedroom/ on your bed without making it too rough on you and stopping you from going stir crazy. (Invite some friend sover to brighten up your room, blow up ballons (NOT YOU) and add streamer and flowers and bright papers and things aroungd the room to make it fun and happy and bright and FUN and have a ball doing this (they say a change is as good as a holiday and if you have to stay in bed then you might as well enjoy the environment (it is amazing what you can do with bluetac, wrapping and other brigth papers and ribbons, balloons, streamers and flowers and such items that are not permanent and not damaging to the structures of your room and that can be changed frequently (what a bout a tropical feel (Hawaiiam holiday) and then later a jungle feel, an antarctic adventure (with penguins and seals and snowflakes and icebergs), you could even download some appropriate music or hire an apporopriate movies order in or have soem friend bring in some theme foods and have a tropicl etc adventure/party/ meal in bed (you could even dress up your PJ's etc to enjoy the feel, make a crepe paper grass skirt or tarzan suit etc), use that amazing imagination of yours and have fun, if you have to stay in bed and rest then you can at least enjoy it. Look after yourself my friend you are in my thoughts and prayers and I am thinking of you and sending you all of the healing thoughts and vibes I possibly can as you have been through so much since I first met you (in a virtual sense)... Sharon (Shazinoz) xxxx > Could someone please tell me when this particular ride stops as I'd > really like to get off for a while. This week has just been a > completely nightmare starting with my Mum smashing her foot, then my > crazy hip dislocation and finally today's rather shell shocking > events. It's a long story but I will try to keep it brief I > promise...I just need somewhere to spill my guts out after a hellish > day. > > I suppose in all honesty it started last night as I had a run of > very painful irregular heart beats followed by 20 minutes of extreme > tachycardia whilst soaking in the bath - I have had them before so > didn't really think anything of it especially when it wore off. This > morning however following an outpatient appointment in my local > hospital, I was hobbling along the corridor when I was floored by a > horrendous chest pain and extreme dizziness. I literally slid down > the wall as a passer by caught me and shouted for some help. Five > minutes later I am hooked up to every monitor possible in ER, > chucking out SVT's all over the place and posting a pulse oxygen > level of just 85%. > > I was struggling to breath even on 100% oxygen, making the doctors > extremely concerned. After several attempts at carotid massage my > heart beat regulated but the rate was still fluctuating from lows of > 60 up to 130 in seconds and my oxygen sats plummeted as soon as the > oxygen was removed due to my laboured breathing. I was sent for a > chest x-ray which had the docs in yet another flap as they told me > they thought I had air around my heart!! Then a cardiologist was > called and his first instinct was that I had started to dissect my > aorta....welcome to how terrify a mutant in two easy steps. > > I was admitted to the cardiac care ward for closer monitoring and > after much probing and prodding they are pretty sure neither of > these has actually happened, but want me to get my artic root size > measured again to check for any dilation due to my Marfan factors. > My heart rate gradually stabilised during the scary and busy > afternoon, as thankfully did my pulse ox which is now steadily at > 98%, but the cardiologist are still very worried and very puzzled as > to what is going on, especially as my blood pressure was so low it > didn't even register at one point. The upshot is that I have to have > even more tests, including repeat halter monitor, echo and tilt > table plus referrals to the cardiology department to try and finally > get to the bottom of my weird heart rate as my blacking out and > collapsing has really spooked everyone. > > As you've probably gathered from the fact I'm writing this, I was > eventually although reluctantly allowed home on the promise I take > strict bed rest and have the cardiologists beeper number on hand > should my SVT or breathlessness begin again during the night. I hope > to God it doesn't as I have never been so frightened in all my life. > I guess I'm going to get plenty of chance to rest my hip though! > Trouble is I really can't afford to rest up like this as I need to > help my Mum. I swear I will be glad when this week/month/year is > over with as it's just one thing after another at the moment. > > But I guess the only way to get through it is to keep smiling and > finding the funny side of things as I always try to. I have to admit > that it was actually amusing and reassuring today to know that I > have a heart, even if it a little mischievous by the looks of > things. I shouldn't really be surprised that I have naughty heart > though should I? ;-) > > Take care all and I hope you are having considerably better days and > week. Thinking of you all and sending apologies if I can't be around > as much as I'd like right now. > > Love and hugs.....Jo > xxx Quote Link to comment Share on other sites More sharing options...
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