I will plan on attending this week also. Being retired I seem to miss what day it is on occasion an have missed the last few. But im.setting an alarm for Wednesday at 1 to help me remember. 😆 tough getting old
Dana
@bellini Great to see you there yesterday and I also welcome you to continue to join us here also. There are others that would enjoy hearing about your Journey here and can help thru the process.
Dana
Hi @bellini! I know Colleen, Dana and Scott have welcomed you to Connect. I'm joining them in greeting you! Please join us on Wednesday at our heart transplant support group meetings. I've been attending since I was first evaluated for heart failure, nearly five years ago. I still attend regularly because I know what a confusing and powerful journey each of us undergoes and it's great to voice our concerns, listen to others and get ideas and answers from those who have gone down this same path.
Heart failure? You too? Five years ago? Sorry! I was diagnosed a month ago and I'm all-over questions. Apologies. Please let me introduce myself. My name's Jennifer (Jen). I'm looking for a heart failure group. I am new to Connect, as well. At the hospital a month ago, all I got was this diagnosis out of a clear, blue sky, and an urgent referral to Internal Medicine there - no information. I actually met the internal med. doctor this week, and she gave me some info, so I'm a little ahead over where I've been for this last, scary month.
Is it a group anyone can join, or do you need a special referral (I don't have one)? Please excuse me jumping in on this thread if it's private. I hope this is ok? Thanks very much! Jen
Heart failure? You too? Five years ago? Sorry! I was diagnosed a month ago and I'm all-over questions. Apologies. Please let me introduce myself. My name's Jennifer (Jen). I'm looking for a heart failure group. I am new to Connect, as well. At the hospital a month ago, all I got was this diagnosis out of a clear, blue sky, and an urgent referral to Internal Medicine there - no information. I actually met the internal med. doctor this week, and she gave me some info, so I'm a little ahead over where I've been for this last, scary month.
Is it a group anyone can join, or do you need a special referral (I don't have one)? Please excuse me jumping in on this thread if it's private. I hope this is ok? Thanks very much! Jen
Hi Jen, I'm sure @danab@estrada53@scottj@bellini and other heart transplant recipients will join me in welcoming you to the Transplants support group here on Mayo Clinic Connect.
Jen, it sounds like you are dealing with heart failure, but not (yet) a transplant recipient. Is heart transplant being discussed as a treatment option for you?
Hi Jen, I'm sure @danab@estrada53@scottj@bellini and other heart transplant recipients will join me in welcoming you to the Transplants support group here on Mayo Clinic Connect.
Jen, it sounds like you are dealing with heart failure, but not (yet) a transplant recipient. Is heart transplant being discussed as a treatment option for you?
No. Not at this point. It looks like the one med. they've tried so far is now starting to work. I realize this may disqualify me. And if it does, I truly don't belong! I looked for a heart failure group, and thought this one included heart failure people. Apologies if a wrong conclusion! And apologies for taking your time, if so.
No. Not at this point. It looks like the one med. they've tried so far is now starting to work. I realize this may disqualify me. And if it does, I truly don't belong! I looked for a heart failure group, and thought this one included heart failure people. Apologies if a wrong conclusion! And apologies for taking your time, if so.
Hi@1075,
Jen before we had our heart transplant, all of us had heart failure. I was on
meds for heart failure for 9 years before needing a transplant. My diagnosis was sarcoidosis induced cardiomyopathy.
Stay in the group as we have experience. It sounds like you haven't been to a cardiologist, just your internal medicine physician or PCP.
Feel free to personal message me and we can talk by phone too.
I've been there and know that it can be scary. It was for my family as well.
No. Not at this point. It looks like the one med. they've tried so far is now starting to work. I realize this may disqualify me. And if it does, I truly don't belong! I looked for a heart failure group, and thought this one included heart failure people. Apologies if a wrong conclusion! And apologies for taking your time, if so.
Hi Jen, as @estrada53 said I also had issues with my heart due to heart failure for about 10 years prior to my transplant. You are definitely welcome here and as they decided on treatment options there are many other groups within the Heart arena like Pacemakers which I also had to help with a portion of my treatment over the years. So feel free to ask any question you have and we can find other groups within this online community to help.
So you have been diagnosed with heart failure which sounds really bad, but has so many levels and the treatment options are many. So don't worry as the term is talking about how much blood leaves your heart per beat. This is usually represented by a percentage known as injection Factor. So to be diagnosed with heart failure usually its below 30 % . But honestly I did not have any major issues when I was at 30. When I first got diagnosed I left the hospital with a pacemaker with my IF at 5 % and for a normal person it is usually around 50-70 % depending on age. Have they mentioned anything about you injection Factor? Also you mentioned a medication as we all have had many different ones so if you want information on different issues with them please ask and im sure someone has probally taken them.
Again Welcome and you will find we are here to help .
Blessings
Thank you so much @estrada53@colleenyoung, @danab, @rosemarya ! I tried to write yesterday but foolishly went grocery shopping Sat., and was a mess for Sunday as well. Tried 4x and it was all over the place. So I've learned my lesson and will keep it brief. Thank you so much everybody, and if Jennifer K. places me in the group, I'll be there. And if not, it was wonderful, even if brief. You all are the most welcoming, and the most supportive, and kindest people I've ever met. Thank you so very, very much. You gave me shelter from the storm.
Thank you so much @estrada53@colleenyoung, @danab, @rosemarya ! I tried to write yesterday but foolishly went grocery shopping Sat., and was a mess for Sunday as well. Tried 4x and it was all over the place. So I've learned my lesson and will keep it brief. Thank you so much everybody, and if Jennifer K. places me in the group, I'll be there. And if not, it was wonderful, even if brief. You all are the most welcoming, and the most supportive, and kindest people I've ever met. Thank you so very, very much. You gave me shelter from the storm.
Thank you so much @estrada53@colleenyoung, @danab, @rosemarya ! I tried to write yesterday but foolishly went grocery shopping Sat., and was a mess for Sunday as well. Tried 4x and it was all over the place. So I've learned my lesson and will keep it brief. Thank you so much everybody, and if Jennifer K. places me in the group, I'll be there. And if not, it was wonderful, even if brief. You all are the most welcoming, and the most supportive, and kindest people I've ever met. Thank you so very, very much. You gave me shelter from the storm.
@1075 I am a heart lung transplant recipient. I too was in heart failure. By the way, I hate that term….so much that when I was hospitalized at Mayo and was on the Heart Failure Service I told one of my docs that they really needed to reevaluate that term. It’s so depressing. I suggested Heart Optimization. Anyway…I digress.
I lived with restrictive cardiomyopathy for about 24 years. I had a pacemaker and then an ICD. We all have a story. And we’re here to share and answer questions if we can. Good luck and you can always reach out to me via private message too.
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I will plan on attending this week also. Being retired I seem to miss what day it is on occasion an have missed the last few. But im.setting an alarm for Wednesday at 1 to help me remember. 😆 tough getting old
Dana
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2 Reactions@bellini Great to see you there yesterday and I also welcome you to continue to join us here also. There are others that would enjoy hearing about your Journey here and can help thru the process.
Dana
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2 ReactionsHi Ellen,
Heart failure? You too? Five years ago? Sorry! I was diagnosed a month ago and I'm all-over questions. Apologies. Please let me introduce myself. My name's Jennifer (Jen). I'm looking for a heart failure group. I am new to Connect, as well. At the hospital a month ago, all I got was this diagnosis out of a clear, blue sky, and an urgent referral to Internal Medicine there - no information. I actually met the internal med. doctor this week, and she gave me some info, so I'm a little ahead over where I've been for this last, scary month.
Is it a group anyone can join, or do you need a special referral (I don't have one)? Please excuse me jumping in on this thread if it's private. I hope this is ok? Thanks very much! Jen
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1 ReactionHi Jen, I'm sure @danab @estrada53 @scottj @bellini and other heart transplant recipients will join me in welcoming you to the Transplants support group here on Mayo Clinic Connect.
Jen, it sounds like you are dealing with heart failure, but not (yet) a transplant recipient. Is heart transplant being discussed as a treatment option for you?
Hi Colleen,
Thank you so much for such a quick reply!
No. Not at this point. It looks like the one med. they've tried so far is now starting to work. I realize this may disqualify me. And if it does, I truly don't belong! I looked for a heart failure group, and thought this one included heart failure people. Apologies if a wrong conclusion! And apologies for taking your time, if so.
Jen
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7 ReactionsHi@1075,
Jen before we had our heart transplant, all of us had heart failure. I was on
meds for heart failure for 9 years before needing a transplant. My diagnosis was sarcoidosis induced cardiomyopathy.
Stay in the group as we have experience. It sounds like you haven't been to a cardiologist, just your internal medicine physician or PCP.
Feel free to personal message me and we can talk by phone too.
I've been there and know that it can be scary. It was for my family as well.
Best wishes, Ellen Estrada
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3 ReactionsHi Jen, as @estrada53 said I also had issues with my heart due to heart failure for about 10 years prior to my transplant. You are definitely welcome here and as they decided on treatment options there are many other groups within the Heart arena like Pacemakers which I also had to help with a portion of my treatment over the years. So feel free to ask any question you have and we can find other groups within this online community to help.
So you have been diagnosed with heart failure which sounds really bad, but has so many levels and the treatment options are many. So don't worry as the term is talking about how much blood leaves your heart per beat. This is usually represented by a percentage known as injection Factor. So to be diagnosed with heart failure usually its below 30 % . But honestly I did not have any major issues when I was at 30. When I first got diagnosed I left the hospital with a pacemaker with my IF at 5 % and for a normal person it is usually around 50-70 % depending on age. Have they mentioned anything about you injection Factor? Also you mentioned a medication as we all have had many different ones so if you want information on different issues with them please ask and im sure someone has probally taken them.
Again Welcome and you will find we are here to help .
Blessings
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Helpful -
Hug
2 ReactionsThank you so much @estrada53 @colleenyoung, @danab, @rosemarya ! I tried to write yesterday but foolishly went grocery shopping Sat., and was a mess for Sunday as well. Tried 4x and it was all over the place. So I've learned my lesson and will keep it brief. Thank you so much everybody, and if Jennifer K. places me in the group, I'll be there. And if not, it was wonderful, even if brief. You all are the most welcoming, and the most supportive, and kindest people I've ever met. Thank you so very, very much. You gave me shelter from the storm.
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3 ReactionsYou're always welcome to continue to connect with fellow heart patients here on Mayo Clinic Connect of course 🙂
You may wish to check out the Heart & Blood Health support group here: https://connect.mayoclinic.org/group/heart-blood-vessel-conditions/
@1075 I am a heart lung transplant recipient. I too was in heart failure. By the way, I hate that term….so much that when I was hospitalized at Mayo and was on the Heart Failure Service I told one of my docs that they really needed to reevaluate that term. It’s so depressing. I suggested Heart Optimization. Anyway…I digress.
I lived with restrictive cardiomyopathy for about 24 years. I had a pacemaker and then an ICD. We all have a story. And we’re here to share and answer questions if we can. Good luck and you can always reach out to me via private message too.
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Like -
Helpful -
Hug
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