So I've had 2 close to death experiences. I don't know how to process all this, the replys from everyone. I had extreme blood loss about a year and a half ago, lung vessal or 2 bursted. I lost consoisness, was numb and tingly, coughing, and lighthead-at least for what I remember. I was napping on my moms couch, when I lived there, because I didnt feel good that morning. All I really remembere is coughing, I didnt seem to realize blood was coming up with each cough. I also remember every once in a while my dog coming to my side and sniffing and licking me. Im pretty sure he sat by me most of the time. My sister was the one to find me after she got off work she came home, I had been alone and doing this for 4-5 hours. I told her immediatly to call 911 because she turned on the light and was like "OH MY GOD, MEGAN there is blood everywhere! What happened? What do I do? I was then drove by ambulence bout 130 miles to a hospital that could handle the situation. I live in a smaller town. I had surgery and came out alrit. Then in October last year I had an inncident where my heart stopped. They took my memory of the whole thing away so I only know what ppoeple have told me and I also sort of remember is like a hazzy dream-like I was looking down at the whole thing. But I screamed for my roomate at about 12 noon and she came in to me crying and telling her to call 911. She called and as she was on the phone w 911 I started to 'seizure' like movements with my arm and stomach and shortly after my eyes rolled back into my head. I had no pulse. Luckily my roomate knew CPR and she saved my life. She preformed CPR untill the paramedics came and continued it and then shocked me back to life. I was flown that time to a near by hospital bout 100 miles away where I staid in ICU for a few days and then got surgery done. Some complications happened during surgery so they stuck me back in ICU. I regained consiousness to them pulling a tube out of my throght and to them telling me what was going on and what had happened. My mother was right next to me when I woke up, otherwise I probably would have freaked out! So we joke, me and my mom, about me having 9 lives like a cat....there has been a few other close calls but nothing like these. But in reality I aint gonna be lucky one time. But my health is medioccur so plans for death haven't exactly been planned out yet. Do I start this? Should I dwell on death when it could be near, with another freak accident? Or should I wait to talk about it and make plans? I was heart broken to read these posts because a few of them sound familiar. It scares the crap out of me! Any thoughts would be greatly apprieciated! Peace and Love-Megan
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What is the end of life for a CFer like?
- Thread starter randomgirl
- Start date
<p>So I've had 2 close to death experiences. I don't know how to process all this, the replys from everyone. I had extreme blood loss about a year and a half ago, lung vessal or 2 bursted. I lost consoisness, was numb and tingly, coughing, and lighthead-at least for what I remember. I was napping on my moms couch, when I lived there, because I didnt feel good that morning. All I really remembere is coughing, I didnt seem to realize blood was coming up with each cough. I also remember every once in a while my dog coming to my side and sniffing and licking me. Im pretty sure he sat by me most of the time. My sister was the one to find me after she got off work she came home, I had been alone and doing this for 4-5 hours. I told her immediatly to call 911 because she turned on the light and was like "OH MY GOD, MEGAN there is blood everywhere! What happened? What do I do? I was then drove by ambulence bout 130 miles to a hospital that could handle the situation. I live in a smaller town. I had surgery and came out alrit. Then in October last year I had an inncident where my heart stopped. They took my memory of the whole thing away so I only know what ppoeple have told me and I also sort of remember is like a hazzy dream-like I was looking down at the whole thing. But I screamed for my roomate at about 12 noon and she came in to me crying and telling her to call 911. She called and as she was on the phone w 911 I started to 'seizure' like movements with my arm and stomach and shortly after my eyes rolled back into my head. I had no pulse. Luckily my roomate knew CPR and she saved my life. She preformed CPR untill the paramedics came and continued it and then shocked me back to life. I was flown that time to a near by hospital bout 100 miles away where I staid in ICU for a few days and then got surgery done. Some complications happened during surgery so they stuck me back in ICU. I regained consiousness to them pulling a tube out of my throght and to them telling me what was going on and what had happened. My mother was right next to me when I woke up, otherwise I probably would have freaked out! So we joke, me and my mom, about me having 9 lives like a cat....there has been a few other close calls but nothing like these. But in reality I aint gonna be lucky one time. But my health is medioccur so plans for death haven't exactly been planned out yet. Do I start this? Should I dwell on death when it could be near, with another freak accident? Or should I wait to talk about it and make plans? I was heart broken to read these posts because a few of them sound familiar. It scares the crap out of me! Any thoughts would be greatly apprieciated! Peace and Love-Megan
T
TleighsHusband
Guest
megan -- feel free to pm me if you have specific questions but here are a couple thoughts on your questions. It is good for all of us to plan for the unknown, even I planned for the possibility of my death with Tiffany knowing what to do, life insurance, and such things. With that said though, we did not focus on dying although we prepared for the possibilities as all of us should do. I would encourage you not to dwell on death continually as that will just accelerate any depression or anxiety. Take the time to have some tough conversations with someone you love and let them know your thoughts on some of the end of life issues but then move forward and look forward to what life has for you. Although it is important to be prepared practically (plans, paperwork, power of attorney, living trust, etc.), spiritually, and with health directives, it is important to not let the fear of the unknown control your life. Tiffany and I had these tough discussions for which now looking back I am very thankful. We discussed the possibilities of the future for both of us but we lived in the joy of what we had now.
T
TleighsHusband
Guest
megan -- feel free to pm me if you have specific questions but here are a couple thoughts on your questions. It is good for all of us to plan for the unknown, even I planned for the possibility of my death with Tiffany knowing what to do, life insurance, and such things. With that said though, we did not focus on dying although we prepared for the possibilities as all of us should do. I would encourage you not to dwell on death continually as that will just accelerate any depression or anxiety. Take the time to have some tough conversations with someone you love and let them know your thoughts on some of the end of life issues but then move forward and look forward to what life has for you. Although it is important to be prepared practically (plans, paperwork, power of attorney, living trust, etc.), spiritually, and with health directives, it is important to not let the fear of the unknown control your life. Tiffany and I had these tough discussions for which now looking back I am very thankful. We discussed the possibilities of the future for both of us but we lived in the joy of what we had now.
T
TleighsHusband
Guest
megan -- feel free to pm me if you have specific questions but here are a couple thoughts on your questions. It is good for all of us to plan for the unknown, even I planned for the possibility of my death with Tiffany knowing what to do, life insurance, and such things. With that said though, we did not focus on dying although we prepared for the possibilities as all of us should do. I would encourage you not to dwell on death continually as that will just accelerate any depression or anxiety. Take the time to have some tough conversations with someone you love and let them know your thoughts on some of the end of life issues but then move forward and look forward to what life has for you. Although it is important to be prepared practically (plans, paperwork, power of attorney, living trust, etc.), spiritually, and with health directives, it is important to not let the fear of the unknown control your life. Tiffany and I had these tough discussions for which now looking back I am very thankful. We discussed the possibilities of the future for both of us but we lived in the joy of what we had now.
D
Deb
Guest
I'm so glad someone asked this. I have been wanting some of this information as well. I do not currently have a living will but feel like I should. My problem is that I am not exactly sure what I want at this point. So I guess my question is: in relation to cf what kind of things should be included in a living will?
I am not at the end-of-life stage but my disease has progressed far enough that I think more about this. Right now I think that I would want everything possible done to attempt to save me. However, I think that as the disease progresses feelings change.
My concern is that if this is not done now I might not get the chance later. Any insight into when to write a living will and what to consider including?
I am not at the end-of-life stage but my disease has progressed far enough that I think more about this. Right now I think that I would want everything possible done to attempt to save me. However, I think that as the disease progresses feelings change.
My concern is that if this is not done now I might not get the chance later. Any insight into when to write a living will and what to consider including?
D
Deb
Guest
I'm so glad someone asked this. I have been wanting some of this information as well. I do not currently have a living will but feel like I should. My problem is that I am not exactly sure what I want at this point. So I guess my question is: in relation to cf what kind of things should be included in a living will?
I am not at the end-of-life stage but my disease has progressed far enough that I think more about this. Right now I think that I would want everything possible done to attempt to save me. However, I think that as the disease progresses feelings change.
My concern is that if this is not done now I might not get the chance later. Any insight into when to write a living will and what to consider including?
I am not at the end-of-life stage but my disease has progressed far enough that I think more about this. Right now I think that I would want everything possible done to attempt to save me. However, I think that as the disease progresses feelings change.
My concern is that if this is not done now I might not get the chance later. Any insight into when to write a living will and what to consider including?
D
Deb
Guest
I'm so glad someone asked this. I have been wanting some of this information as well. I do not currently have a living will but feel like I should. My problem is that I am not exactly sure what I want at this point. So I guess my question is: in relation to cf what kind of things should be included in a living will?
<br />
<br />I am not at the end-of-life stage but my disease has progressed far enough that I think more about this. Right now I think that I would want everything possible done to attempt to save me. However, I think that as the disease progresses feelings change.
<br />
<br />My concern is that if this is not done now I might not get the chance later. Any insight into when to write a living will and what to consider including?
<br />
<br />I am not at the end-of-life stage but my disease has progressed far enough that I think more about this. Right now I think that I would want everything possible done to attempt to save me. However, I think that as the disease progresses feelings change.
<br />
<br />My concern is that if this is not done now I might not get the chance later. Any insight into when to write a living will and what to consider including?
about 3 months ago I vacuumed - to save my incredible husband some work time. About 5 pm - and went into a coughing fit that lasted about 40 minutes - finally got it calmed down and laid down to rest. Went to sleep around midnight - woke up the next morning coughing - no big deal. But felt wetness. Was home alone and opened my eyes to see blood everywhere - just pouring out of my mouth with every cough. I KNEW I was dying right there. Called 911. Called my husband and duaghter to tell them I loved them. Just knew it was the end - I had never seen so much blood and it didn't stop. Ambulance worked around the 2 very protective dogs and took me to the nearest ER - 15 min away. Told them I had CF - doc's name and the he is out of Children's National Medical Center in DC (about an hour away - they said no way to that ride - but called him). Bleeding stopped. ER techs were freaked at the amount of blood and reported it at just over a pint. Had everyone kind of wigged. Only explanation is that the coughing fit the day before broke a vessel that was leaking into my lung while I slept. (which explains the blood being thick as it came out - it was already thickening in the lung). When the level reached what your normal reacts to - I started coughing it up. So it had bleed that much over a period of time and not all at once like it appeared. Instructions from doc - and he is well known in the country as one of the best <img src="i/expressions/face-icon-small-smile.gif" border="0"> - is go straight to ER - keep his number on me (it's now engraved on an alert charm). That is the extent of our plan. I trust Dr. L with all my heart - so I'm good. But nothing is scarier than that - now I watch and say...pffft...that's NOTHING when the patients cough up blood - house has yet to see my little trick <img src="i/expressions/face-icon-small-smile.gif" border="0">
Any way. Hubby and I have spoken - a few nieces in my life very dear to me and he will keep an eye on them and make sure they get an education. I am a new grandmother - NIcholas just turned 1 - so currently my wishes are to fight like all hell. I know in my heart I will NEVER give up on Nicholas - so keep trying honey - don't give up - trust me I'm fighting like hell to come back. And that's my message <img src="i/expressions/face-icon-small-smile.gif" border="0">
Any way. Hubby and I have spoken - a few nieces in my life very dear to me and he will keep an eye on them and make sure they get an education. I am a new grandmother - NIcholas just turned 1 - so currently my wishes are to fight like all hell. I know in my heart I will NEVER give up on Nicholas - so keep trying honey - don't give up - trust me I'm fighting like hell to come back. And that's my message <img src="i/expressions/face-icon-small-smile.gif" border="0">
about 3 months ago I vacuumed - to save my incredible husband some work time. About 5 pm - and went into a coughing fit that lasted about 40 minutes - finally got it calmed down and laid down to rest. Went to sleep around midnight - woke up the next morning coughing - no big deal. But felt wetness. Was home alone and opened my eyes to see blood everywhere - just pouring out of my mouth with every cough. I KNEW I was dying right there. Called 911. Called my husband and duaghter to tell them I loved them. Just knew it was the end - I had never seen so much blood and it didn't stop. Ambulance worked around the 2 very protective dogs and took me to the nearest ER - 15 min away. Told them I had CF - doc's name and the he is out of Children's National Medical Center in DC (about an hour away - they said no way to that ride - but called him). Bleeding stopped. ER techs were freaked at the amount of blood and reported it at just over a pint. Had everyone kind of wigged. Only explanation is that the coughing fit the day before broke a vessel that was leaking into my lung while I slept. (which explains the blood being thick as it came out - it was already thickening in the lung). When the level reached what your normal reacts to - I started coughing it up. So it had bleed that much over a period of time and not all at once like it appeared. Instructions from doc - and he is well known in the country as one of the best <img src="i/expressions/face-icon-small-smile.gif" border="0"> - is go straight to ER - keep his number on me (it's now engraved on an alert charm). That is the extent of our plan. I trust Dr. L with all my heart - so I'm good. But nothing is scarier than that - now I watch and say...pffft...that's NOTHING when the patients cough up blood - house has yet to see my little trick <img src="i/expressions/face-icon-small-smile.gif" border="0">
Any way. Hubby and I have spoken - a few nieces in my life very dear to me and he will keep an eye on them and make sure they get an education. I am a new grandmother - NIcholas just turned 1 - so currently my wishes are to fight like all hell. I know in my heart I will NEVER give up on Nicholas - so keep trying honey - don't give up - trust me I'm fighting like hell to come back. And that's my message <img src="i/expressions/face-icon-small-smile.gif" border="0">
Any way. Hubby and I have spoken - a few nieces in my life very dear to me and he will keep an eye on them and make sure they get an education. I am a new grandmother - NIcholas just turned 1 - so currently my wishes are to fight like all hell. I know in my heart I will NEVER give up on Nicholas - so keep trying honey - don't give up - trust me I'm fighting like hell to come back. And that's my message <img src="i/expressions/face-icon-small-smile.gif" border="0">
about 3 months ago I vacuumed - to save my incredible husband some work time. About 5 pm - and went into a coughing fit that lasted about 40 minutes - finally got it calmed down and laid down to rest. Went to sleep around midnight - woke up the next morning coughing - no big deal. But felt wetness. Was home alone and opened my eyes to see blood everywhere - just pouring out of my mouth with every cough. I KNEW I was dying right there. Called 911. Called my husband and duaghter to tell them I loved them. Just knew it was the end - I had never seen so much blood and it didn't stop. Ambulance worked around the 2 very protective dogs and took me to the nearest ER - 15 min away. Told them I had CF - doc's name and the he is out of Children's National Medical Center in DC (about an hour away - they said no way to that ride - but called him). Bleeding stopped. ER techs were freaked at the amount of blood and reported it at just over a pint. Had everyone kind of wigged. Only explanation is that the coughing fit the day before broke a vessel that was leaking into my lung while I slept. (which explains the blood being thick as it came out - it was already thickening in the lung). When the level reached what your normal reacts to - I started coughing it up. So it had bleed that much over a period of time and not all at once like it appeared. Instructions from doc - and he is well known in the country as one of the best <img src="i/expressions/face-icon-small-smile.gif" border="0"> - is go straight to ER - keep his number on me (it's now engraved on an alert charm). That is the extent of our plan. I trust Dr. L with all my heart - so I'm good. But nothing is scarier than that - now I watch and say...pffft...that's NOTHING when the patients cough up blood - house has yet to see my little trick <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />Any way. Hubby and I have spoken - a few nieces in my life very dear to me and he will keep an eye on them and make sure they get an education. I am a new grandmother - NIcholas just turned 1 - so currently my wishes are to fight like all hell. I know in my heart I will NEVER give up on Nicholas - so keep trying honey - don't give up - trust me I'm fighting like hell to come back. And that's my message <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />Any way. Hubby and I have spoken - a few nieces in my life very dear to me and he will keep an eye on them and make sure they get an education. I am a new grandmother - NIcholas just turned 1 - so currently my wishes are to fight like all hell. I know in my heart I will NEVER give up on Nicholas - so keep trying honey - don't give up - trust me I'm fighting like hell to come back. And that's my message <img src="i/expressions/face-icon-small-smile.gif" border="0">
Megan,
I would say have that conversation with your mom at least. My daughters conversation was with myself her brother sister and daddy. Her biggest fear was we would be mad at her becasue she wanted to sign a DNR/DNI. Once she knew that we would support her decisions the whole conversation itself was maybe 30 mins. And there was no dwelling on it after it was discussed that was it. The only thing she wanted was a beer pong game with her brother cousins and friends to be played in her honor at funeral parlor. Told her I doubted that could be done there, she felt becasue we are Irish it was a must( I know stereotype). she did accept that we would have one at somoenes house which ended up being mine right after viewing was over. She would been pleased all freinds cousins were there her father and I even played well her brother said we embaraased the family casue we played so bad.
I can tell you once I knew what she wanted when the end came becasue I was on auto pilot the side of my brain that held her instructions just took over. She had also instructed us on what jewlrey we were to set aside for her son and at what age to give it to him.
I would say have that conversation with your mom at least. My daughters conversation was with myself her brother sister and daddy. Her biggest fear was we would be mad at her becasue she wanted to sign a DNR/DNI. Once she knew that we would support her decisions the whole conversation itself was maybe 30 mins. And there was no dwelling on it after it was discussed that was it. The only thing she wanted was a beer pong game with her brother cousins and friends to be played in her honor at funeral parlor. Told her I doubted that could be done there, she felt becasue we are Irish it was a must( I know stereotype). she did accept that we would have one at somoenes house which ended up being mine right after viewing was over. She would been pleased all freinds cousins were there her father and I even played well her brother said we embaraased the family casue we played so bad.
I can tell you once I knew what she wanted when the end came becasue I was on auto pilot the side of my brain that held her instructions just took over. She had also instructed us on what jewlrey we were to set aside for her son and at what age to give it to him.
Megan,
I would say have that conversation with your mom at least. My daughters conversation was with myself her brother sister and daddy. Her biggest fear was we would be mad at her becasue she wanted to sign a DNR/DNI. Once she knew that we would support her decisions the whole conversation itself was maybe 30 mins. And there was no dwelling on it after it was discussed that was it. The only thing she wanted was a beer pong game with her brother cousins and friends to be played in her honor at funeral parlor. Told her I doubted that could be done there, she felt becasue we are Irish it was a must( I know stereotype). she did accept that we would have one at somoenes house which ended up being mine right after viewing was over. She would been pleased all freinds cousins were there her father and I even played well her brother said we embaraased the family casue we played so bad.
I can tell you once I knew what she wanted when the end came becasue I was on auto pilot the side of my brain that held her instructions just took over. She had also instructed us on what jewlrey we were to set aside for her son and at what age to give it to him.
I would say have that conversation with your mom at least. My daughters conversation was with myself her brother sister and daddy. Her biggest fear was we would be mad at her becasue she wanted to sign a DNR/DNI. Once she knew that we would support her decisions the whole conversation itself was maybe 30 mins. And there was no dwelling on it after it was discussed that was it. The only thing she wanted was a beer pong game with her brother cousins and friends to be played in her honor at funeral parlor. Told her I doubted that could be done there, she felt becasue we are Irish it was a must( I know stereotype). she did accept that we would have one at somoenes house which ended up being mine right after viewing was over. She would been pleased all freinds cousins were there her father and I even played well her brother said we embaraased the family casue we played so bad.
I can tell you once I knew what she wanted when the end came becasue I was on auto pilot the side of my brain that held her instructions just took over. She had also instructed us on what jewlrey we were to set aside for her son and at what age to give it to him.
Megan,
I would say have that conversation with your mom at least. My daughters conversation was with myself her brother sister and daddy. Her biggest fear was we would be mad at her becasue she wanted to sign a DNR/DNI. Once she knew that we would support her decisions the whole conversation itself was maybe 30 mins. And there was no dwelling on it after it was discussed that was it. The only thing she wanted was a beer pong game with her brother cousins and friends to be played in her honor at funeral parlor. Told her I doubted that could be done there, she felt becasue we are Irish it was a must( I know stereotype). she did accept that we would have one at somoenes house which ended up being mine right after viewing was over. She would been pleased all freinds cousins were there her father and I even played well her brother said we embaraased the family casue we played so bad.
I can tell you once I knew what she wanted when the end came becasue I was on auto pilot the side of my brain that held her instructions just took over. She had also instructed us on what jewlrey we were to set aside for her son and at what age to give it to him.
I would say have that conversation with your mom at least. My daughters conversation was with myself her brother sister and daddy. Her biggest fear was we would be mad at her becasue she wanted to sign a DNR/DNI. Once she knew that we would support her decisions the whole conversation itself was maybe 30 mins. And there was no dwelling on it after it was discussed that was it. The only thing she wanted was a beer pong game with her brother cousins and friends to be played in her honor at funeral parlor. Told her I doubted that could be done there, she felt becasue we are Irish it was a must( I know stereotype). she did accept that we would have one at somoenes house which ended up being mine right after viewing was over. She would been pleased all freinds cousins were there her father and I even played well her brother said we embaraased the family casue we played so bad.
I can tell you once I knew what she wanted when the end came becasue I was on auto pilot the side of my brain that held her instructions just took over. She had also instructed us on what jewlrey we were to set aside for her son and at what age to give it to him.