What is the end of life for a CFer like?

[randomgirl]

I'm just curious as to what happens at the end of a CF persons life?  Is the person most always too sick to breath on their own so they are most always on a ventilator?  Or does the cf patients usually just die in bed at home without any intubation?  I tried looking this up myself but I couldn't find any answers.  And I know every CF person is different but I just wanted to know how the end of life is usually like.  Thanks.

 

[LouLou]

Great question and one that is VERY infrequently discussed so kuddos for having the gumption! I will mention a few that I can think of and anyone please correct any misused terminology. I have a plan in place to prevent #2 because if you ever have had hemopytsis it's good to have an emergency plan for a major bleed!

1) Low blood sugar coma - CFRD related.
2) Massive blood loss from hemoptysis.
3) Heart attack from stress on heart (pulmonary hypertension?) due to low pulmonary function
4) CO2 asphyxiation (ineffectiveness of lung tissue exchanging CO2 for O2 - first a bi-pap is tried if not successful in correcting a vent is used)

This summer as part of getting my 5 wishes set up, my doctor is meeting with my husband, mother and I to discuss what to expect and what to do if things went to hell in a handbag...since with cf we never really know what tomorrow will bring.

On that note, I hope everyone has a great day!

 

[Melissa75]

LouLou, Can you explain your hemoptysis plan?
<br />It's been a while for me since a massive bleed but the memory lingers and it is why I wear a medic alert bracelet that says I have bronchiectasis and von willebrands (bleeding disorder).
<br />And I'll never forget when a woman from the bronchiectasis r us forum died a few yrs ago from hemoptysis. She'd battled anxiety about her hemoptysis and helped others with their stress but, man, what a well-founded fear, at least in her case.

 

[duke1234]

I'd also like to hear the bleeding plan, I've never had massive bleeding but I have coughed up blood plenty of times. And I'll try to give a little less scary answer, most people i've talked to who have had friends or family die of cf said they went very peacefully. I was told I had less than a year back in October and I am living pretty good, on oxygen and don't get out much but I'm comfortable. My hospice team gave me an emergency medical kit that has pain meds,anxiety meds, nausea meds, and a few other things, hospice care is a great blessing and I know when my time comes I'll be comfortable and free of pain. And most people only go on the ventilator to buy a few days if they're trying to get a transplant. if you're not on the list a ventilator is a pointless thing that just prolongs suffering and discomfort.

 

[Tammy15]

When my daughter was told she was kind of at end stage we had a family meeting where she told us what her wishes were. She signed her DNR/DNI order . Some of her plans changed, one thing we thought she might be under hospice but she was not and she wanted when time came for her son to be sitting with her as he was 4  she felt that was not one of her best decisions so that was changed 
It was a year after our discussion that we were faced with it. Most of family pretended to be calm and actually she was.  Its hard to explain but the look on her face all during was just peaceful . She kinda directed all of us even the doctors, like she was telling us she was going to the mall and what we needed to do. she even told us what she wanted as far as funerals .
 Her doctors and nurses told us how she and our family taught them things during this time.  I am  not sure what , but I think becasue we had our family talk and she was so peaceful about it all thats what got us through.  I am sure we were probably more lucky than some when the time came.
She was on a bipap but carbon levels were rising once the doctors said nothing more at that point she told us she wanted to have her sons 5th bday party with him in hospital so as our family was already there everyone qucik made store trips party supplies and cake . She was kinda in and out like she was taking little naps,
Her one rule if anyone started to get upset cray to leave her room .  ONce party was done and she had spent what she could with her son she told doctors to start  morphine. I laid in bed with her holding her, her brother and sister holding her hand , her friends and daddy touching her legs.

 

[Tammy15]

<p>When my daughter was told she was kind of at end stage we had a family meeting where she told us what her wishes were. She signed her DNR/DNI order . Some of her plans changed, one thing we thought she might be under hospice but she was not and she wanted when time came for her son to be sitting with her as he was 4 she felt that was not one of her best decisions so that was changed
<p>It was a year after our discussion that we were faced with it. Most of family pretended to be calm and actually she was. Its hard to explain but the look on her face all during was just peaceful . She kinda directed all of us even the doctors,like she was telling us she was going to the mall and what we needed to do. she even told us what she wanted as far as funerals .
<p>Her doctors and nurses told us how she and our family taught them things during this time. I am not sure what , but I think becasue we had our family talk and she was so peaceful about it all thats what got us through. I am sure we were probably more lucky than some when thetime came.
<p>She was on a bipap but carbon levels were rising once the doctors said nothing more at that point she told us she wanted to have her sons 5th bday party with him in hospital so as our family was already there everyone qucik made store trips party supplies and cake . She was kinda in and out like she was taking little naps,
<p>Her one rule if anyone started to get upset cray to leave her room . ONce party was done and she had spent what she could with her son she told doctors tostartmorphine. I laid in bed with her holding her, her brother and sister holding her hand , her friends and daddy touching her legs.

 

[TleighsHusband]

When I read this post this morning, I knew that I would want to comment but also knew I would need the day to think about it. I hope that I have not shared more than is helpful. End stage CF as was noted earlier is different from person to person depending on what they face. Off of LouLou's list we had a couple scares with #1 but were always able to get her blood sugars up before she went into diabetic shock. #2 was never a major issue for Tiffany although I was scared about #3 during her last hospital stay because her heart rate stayed so high, but her heart stayed strong to the end. We faced complications with #4 with the combination of MRSA. We thought that we had the MRSA in her bloodstream beat again (this was the second time) and had clear blood tests for almost two weeks when it came back with a vengeance even with all the IV drugs she was on in the hospital. The tests came back positive on a Saturday night from a Thursday blood draw and by the middle of Sunday night we were in ICU as her oxygen levels were dropping quickly and the 10L of oxygen in the room was not enough. It was that Sunday that Tiffany knew that she was not going to make it even before we went to ICU. We cried together, read Scripture, and began to prepare for the coming days. Tiffany never gave up but she felt an internal change that frankly I cannot explain but she knew before all of us. On Monday morning her CO2 levels began to rise even with the bi-pap mask so we called family. As was mentioned before, the ventilator really only prolongs the process unless there are other issues involved like a transplant or a new drug that seems to be helping. Our decision (mainly Tiffany's with my support) was that Tiffany would only go on the vent if it would give a true fighting chance that was more than just delaying the inevitable or she would go on it to stay alive until her brother made in to town. On Monday, we planned her memorial service where she very clearly told us what she wanted and did not want. Her family all made it in on Tuesday and we had such a great time together of singing, telling stories, praying, reading more scripture, laughing, and yes some crying (we too worked hard at not having emotional outbreaks in the room for Tiffany's sake -- I really think she comforted us more at times than we did her). Since her family made it and the Dr. said that there was nothing else that could be done we decided not to go on to the vent. Wed afternoon because of the MRSA she was beginning to be in more pain so they had given her stronger meds to make her comfortable so that there would be no pain, this was the only time that she was not conscious although she slept on and off a lot the last couple of days. Finally, Wednesday night, the Lord quietly took her home as I held her hand and quietly talked to her. Tiffany's last challenge to me though simple was very deep "Hope in God." Although it is a different topic but related we could start another post dealing with the difficult issue of preparing for end stage CF if it would be of help.

 

[TleighsHusband]

Thanks for asking the tough questions and hope this helps.

 

[TleighsHusband]

Thanks for asking the tough questions and hope this helps.

 

[TleighsHusband]

Thanks for asking the tough questions and hope this helps.

 

[LouLou]

Our plan includes having phone number of cf center (always a cf doc on call) in my husband's cell phone so I am not scrambling around to get numbers for him to make calls. If the bleed just won't stop I am supposed to go to one of two hospitals in the area (we discussed which is better for Interventional Radiology). If it will stop but is a major bleed (more than 1 cup of blood) I am to go directly to IR at my clinic's hospital. Identify that I have cf, hemoptysis, and that my doctor has been called.

It's really not a big deal but it gives me peace of mind. In the time of hemptysis, it's so important to remain calm as to keep blood pressure down to allow proper clotting. I also have developed a perfect scene in my head of my favorite place on earth to retreat to when I am bleeding. It helps me calm down immediately. Most massive bleeds involve the person being totally freaked out understandably so but also NOT helpful.

 

[LouLou]

Our plan includes having phone number of cf center (always a cf doc on call) in my husband's cell phone so I am not scrambling around to get numbers for him to make calls. If the bleed just won't stop I am supposed to go to one of two hospitals in the area (we discussed which is better for Interventional Radiology). If it will stop but is a major bleed (more than 1 cup of blood) I am to go directly to IR at my clinic's hospital. Identify that I have cf, hemoptysis, and that my doctor has been called.

It's really not a big deal but it gives me peace of mind. In the time of hemptysis, it's so important to remain calm as to keep blood pressure down to allow proper clotting. I also have developed a perfect scene in my head of my favorite place on earth to retreat to when I am bleeding. It helps me calm down immediately. Most massive bleeds involve the person being totally freaked out understandably so but also NOT helpful.

 

[LouLou]

Our plan includes having phone number of cf center (always a cf doc on call) in my husband's cell phone so I am not scrambling around to get numbers for him to make calls. If the bleed just won't stop I am supposed to go to one of two hospitals in the area (we discussed which is better for Interventional Radiology). If it will stop but is a major bleed (more than 1 cup of blood) I am to go directly to IR at my clinic's hospital. Identify that I have cf, hemoptysis, and that my doctor has been called.
<br />
<br />It's really not a big deal but it gives me peace of mind. In the time of hemptysis, it's so important to remain calm as to keep blood pressure down to allow proper clotting. I also have developed a perfect scene in my head of my favorite place on earth to retreat to when I am bleeding. It helps me calm down immediately. Most massive bleeds involve the person being totally freaked out understandably so but also NOT helpful.

 

[entropy]

The end of life for a CF patient is peaceful. Morphine or other strong narcotics will be administered to relieve any pain / feelings of breathlessness. Anti-anxiety meds, such as benzodiazepines, are administered if the person is obviously distraught. It's not fun... it's death. But it's also not that bad. I know this because I experienced it myself. I nearly died last year from pneumonia and a collapsed lung, was on a ventilator for weeks, etc. I accepted that I was going to die, and would sit there thinking "any moment now..."

Some of you may think "but you weren't in end-stage CF"... which is true. But, end stage CF or not, I was in full respiratory failure for a prolonged period, and only by luck (god, thought power, WHATEVER) did I manage to recover. I even caught some glimpses of "the other side" during this experience.

It sucks... but it's not that bad. If the person has family by their side 24/7, it makes things so much better. I didn't have people with me there 24/7, and I remember all I wanted was to see my mom. I now understand why men who are shot on a battlefield and dying call out for their mothers. For young men, mothers represent love, protection, healing... the womb.

So, in summation, don't dwell on it. It's not that bad.

 

[entropy]

The end of life for a CF patient is peaceful. Morphine or other strong narcotics will be administered to relieve any pain / feelings of breathlessness. Anti-anxiety meds, such as benzodiazepines, are administered if the person is obviously distraught. It's not fun... it's death. But it's also not that bad. I know this because I experienced it myself. I nearly died last year from pneumonia and a collapsed lung, was on a ventilator for weeks, etc. I accepted that I was going to die, and would sit there thinking "any moment now..."

Some of you may think "but you weren't in end-stage CF"... which is true. But, end stage CF or not, I was in full respiratory failure for a prolonged period, and only by luck (god, thought power, WHATEVER) did I manage to recover. I even caught some glimpses of "the other side" during this experience.

It sucks... but it's not that bad. If the person has family by their side 24/7, it makes things so much better. I didn't have people with me there 24/7, and I remember all I wanted was to see my mom. I now understand why men who are shot on a battlefield and dying call out for their mothers. For young men, mothers represent love, protection, healing... the womb.

So, in summation, don't dwell on it. It's not that bad.

 

[entropy]

The end of life for a CF patient is peaceful. Morphine or other strong narcotics will be administered to relieve any pain / feelings of breathlessness. Anti-anxiety meds, such as benzodiazepines, are administered if the person is obviously distraught. It's not fun... it's death. But it's also not that bad. I know this because I experienced it myself. I nearly died last year from pneumonia and a collapsed lung, was on a ventilator for weeks, etc. I accepted that I was going to die, and would sit there thinking "any moment now..."
<br />
<br />Some of you may think "but you weren't in end-stage CF"... which is true. But, end stage CF or not, I was in full respiratory failure for a prolonged period, and only by luck (god, thought power, WHATEVER) did I manage to recover. I even caught some glimpses of "the other side" during this experience.
<br />
<br />It sucks... but it's not that bad. If the person has family by their side 24/7, it makes things so much better. I didn't have people with me there 24/7, and I remember all I wanted was to see my mom. I now understand why men who are shot on a battlefield and dying call out for their mothers. For young men, mothers represent love, protection, healing... the womb.
<br />
<br />So, in summation, don't dwell on it. It's not that bad.

 

[Lisapatg]

I appreciate this question. I've often wondered the same thing and find it comforting to know that end of life for my cf husband wont be painful.

 

[Lisapatg]

I appreciate this question. I've often wondered the same thing and find it comforting to know that end of life for my cf husband wont be painful.

 

[Lisapatg]

I appreciate this question. I've often wondered the same thing and find it comforting to know that end of life for my cf husband wont be painful.

 

[megan420]

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