I have heard thy prayer, I have seen thy tears, behold I will heal thee.
2Kings 20:5

Saturday, May 15, 2010

*WARNING * This is about Dying from CF. . . Not a cheerful post!

For many years I honestly wondered 'what is was like when CF finally kills you'. It may seem a little bizarre and kinda twisted, but I wanted to know. I never really got a straight answer. I wanted to know what patients went through and how the hospital/Doctors handled it.  I have a good friend who did know. . .she had experienced the passing of friends and unfortunately siblings. She was the only one who shared a glimpse of what I would experience 'some day'.  Because I could never get a straight answer or a very general answer. . . .I would like to share what it's like to DIE of Cystic Fibrosis. If you don't want to know, if you're not asking yourself the same questions I did years ago, then don't read past this point.

First off, I believed it would never happen to me. I had MANY misconceptions of how and more importantly 'why' CF patients died.  I thought they all chose to 'give up' and that is what caused their health to decline which lead to death. I really honestly didn't see CF for what it is, or what it is capable of doing. For a lot of reasons that is a good thing, but it also gave me a misguided look at how CF kills. When I was in my early 20's I was probably the healthiest I had ever been with CF lungs. I swam regularly, taught swim lessons from 7am-10:45am then worked from 11am-5am as a carhop. I did that five days a week. My weight was good and my life was wonderful. It was then that I came across a story of a woman with Cystic Fibrosis who described a day in her life. As I read her words: "I get up around 2pm and I can't do much. My bath is the highlight of my day", I immediately put an unfair judgment on her. I was sure that she was capable of more and had decided to let CF take over. I thought she needed to take control of her life and health back. . . . . It would be about 8 years later before I learned the error in my judgments.

Most CFers know that going on full time oxygen is not a good sign. That, in itself, was a giant hurdle in my life & happiness. But I am going to skip ahead to the weeks before CF literally was killing me. This was a day in my life:
"I sleep all the time, I have no energy. Just putting on my clothes seems like an unbearable task that I know I will be exhausted after accomplishing. I sleep in until around 2pm. I try to stay active and for the most part. I can still do a few things, but not many without suffering for it later. It takes up too much energy to carry on a conversation, so I voluntarily stay out of conversations if I can. It is painful. I am in pain physically and emotionally. The highlight of my day is when I can sit in a warm bath and the water hides my tears. I am scared, I am sad, I know I am dying. Just the few seconds it takes to change my oxygen tanks I can feel my life trying to slip away. I want this to end. I hold on to what little hope I have. I am strong on the outside for those around me but I feel like I am a burden.  I am dying from the inside out and I have no control over it."  It is still painful to relive the memories of those days and it still hurts to the point that it brings me to tears. 

That is just a few of the things. . . I had no control how fast CF took my health away from me. No matter what I did, my body was not going to recover. My lungs were reaching their expiration date. I knew then that all my ideas and thoughts on how CF kills were previously wrong.

The end, the very end. . . .I was anxious, I was fearful that I would go to sleep and Bryan would wake up to my lifeless body.  I am pretty sure that what I was experiencing physically was also what CFers before all had gone through. I felt like I was drowning and many times would only cough up mouthfulls of blood. That was only one of my problems. When the lungs can no longer function and the gas exchange is no longer working properly, then CF lungs are not capable of releasing the carbon dioxide from your body. The carbon dioxide builds up in your body and begins to kill you. Also my resting heart rate was around 125-130 and my CO2 levels became toxic despite being on a bipap machine for months and months. The hospital could not reduce them. I became disoriented, confused, VERY tired. . . .I experienced dimentia until finally I became unresponsive. That is when the hospital/doctors would have given Bryan the decision to ventilate me or to let them make me comfortable (morphine, etc) until. . . . . . I passed away. For me however, transplant was offered and I was ventilated to keep me alive while I waited for new lungs.

 Now I am not a doctor or a nurse and I can't say for sure that this how it will always be done, but from what I heard from others and my own experience. . . I would say I got my questions answered and I didn't like the truth.

*Note- A Double Lung Transplant is the only option to avoid going through some of this. Most centers will list patients before they are THIS sick. If patients opt out of transplant, then it is likely they will experience some or all of what I did. I was given a Miracle I have never doubted that! I cannot wish for anything greater than a cure for this disease so no one else has to suffer this.
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11 comments:

Brianna said...

So when is your book coming out??? I love your posts, though this one was sad, it's very insightful. Makes all of us Whiney "normal" health people realize that our little knicks and scraps arent' so bad. My DL proudly says ORGAN DONOR! and it will always say that! love ya.

Amy said...

well said....I too always thought that you could have control over your CF and not let it "win". But now that I am on O2 at night and with exercise and exhausted all the time I realize that I too was wrong. I like reading about the last months of CFers...morbid it may be but it gives me some insight to what I might experience.

much love!!!!

Jamie said...

I have been wondering this same thing for a few years now and to have not been given a straight answer just the "it's different for everyone" bull crap. Thank you so much for posting this, I had done some research and found this is too how it is for most. I think with CF you kind of become fascinated by death because it is almost always the out come of our disease, not morbid I say, but educating.

Anonymous said...

I know exactly what you are saying I have been steps away from death. I like you was fortunate to have a transplant and it is wonderful to have the opportunity to cheat death

Nycole said...

Thank you for posting this! My husband has end-stage CF and has been on the transplant waiting list for 7 months. You have answered a lot of our questions that doctors don't talk about. Thank yoU!!

stephanie young said...

I recently lost a step niece to this disease. She was only 22. This poor girl went through hell in her short time here on earth. She had a lung transplant and everything was going good except infections here and there. About two years after the transplant, her body started rejecting the lungs. She went down hill fast. Within a month, there was nothing else the doctors could do. The doctor said her body couldn't go through another transplant. She did not want to be put on a ventilator. So this sweet young Angel passed on my birthday... December 19, 2014. She has a younger sister that also has this disease. My heart aches for this family. My heart aches for everyone going through this. Danielle Sargent will ALWAYS be loved, and remembered. I only wished I could, and would had spent more time with her. Now she is an angel in heaven, breathing easily now, loves animals,. She is greatly missed.

Unknown said...

I'm 23 and have had CF since birth. I did very well with it growing up with much thanks to my mother. She passed when I was 16 and shortly after that I found myself in the hospital after six years of staying away. As I reached my high teens my arrogance got the best of me and I did not take my treatments as seriously as I know now that I should have. But how can you blame me? My health was pretty great and all I wanted to do was go out and live my life normally. People have various aspirations, all I ever wanted to do was to be disability free like almost every kid I met throughout my life. Growing up I had countless tantrums screaming "why me?" over and over. As I matured I learned to be more accepting of what I was born with and do my best to be happy day in and day out. The last few years I had been averaging about one hospital stay per year. It wasn't until 2015 that I experienced multiple stays, three to be specific, January, July and I just got out as recently as three days ago. Today I have experienced something that I never have before... I already feel the disease coming back heavily. I had a feeling something was wrong because when I left I did not feel as wonderful and energrtic as I had in previous visits. I feel as though I have taken a big step backwards in as little as three days. Honestly, I'm terrified. I have read of people becoming less responsive to antibiotics but I never actually thought it would happen to me. I know what the road of a CF patient inevitably leads to. It's an extremely difficult journey that will include to increased hospital stays, lung transplants, ventilation and ultimately death. After all these years I am realizing that these things are among me and are going to occur sooner rather than later. I have had a terrible time this year informing my friends and family of my hospital stays. It kills me when I hear the hurt in their voice when they ask "again?" How am I supposed to eventually tell my friends and family that I will require a lung transplant? How am I going to tell them that there's nothing more the doctors can do for me? How will I bear my grandmother's cry over the phone? How will I handle hearing my father say how much he dreaded the fact that I might go before him? How will I cope with the guilt of leaving my sister when we already felt the anguish that came with losing our mother? These are the things that terrify me, not death itself. There will be a day when I look into my loved ones eyes for the last time and will see the pain in their eyes. That will be worse than dying. I've tried to accept this life, but now that the worst is approaching I don't know how to handle it. To those of you CF patients who are in good health, never stop taking care of yourself. No matter how well you feel now, treatments are more about prevention. Health should be your number one priority. I realize this now, but a lot of damage has already been done

Anonymous said...

Put your trust in God. He can heal you from any disease.

Anonymous said...

Hey. I realize that this page has probably been abandoned, since it was posted seven years ago, but I still feel the need to say/write this. My timing is awful though, and I'm sure that anyone who reads/sees this will be thinking: what the heck are you doing up so late? I know I shouldn't be, but come one guys, it's summer, so I'm fine. Also, I don't have a job that would keep me up this late, because I can't even work at Kroger yet, so no one is going to hire me, although I have made a few resumes. Anyway, back to the point. The reason I looked up information about Cystic fibrosis is because my mom told me that when I was younger, the doctors seriously thought I had it. However, I don't. Instead I have most likely one of the worst cases of asthma. Now, let me set something straight; I am not writing this so that I can brag about how lucky I was, and how hard severe asthma made/makes my life. Because living with CF is even harder. Until tonight, I never understood what CF really was, or what it was like having it. All I knew was that if I did have it, I would never be able to dance, or play soccer until I nearly pass out.(True story) I also knew that I would die around the age of 20, or, like my dad said, if I took wonderful care of myself, I could live up to my 40s, possibly 50s. I thought it was incurable, too. But I'm glad that's not the case. I want everyone with CF and everyone who has a loved one with CF to know that I am praying for them. I'll also pray that there will be less babies born with CF. CF is a horrible disease, as you guys already know. Please don't think that when I say I'm glad I don't have it that I think I'm better than those who do. To me, it's almost the other way around. I cheer those on who have CF and are still finding joy in their lives. Good For You! Keep At It! And to those who are saddened by their disease, please try to smile. There is something left in this life for you to smile at, and there is someone left for you to smile with. I cheer you guys on too, and hope you find that something and someone. I'm almost done, so don't worry. I hope you're not bored, but even if you are, you made it to the end of my little essay. I congratulate you. That takes patience and determination. As well as nothing better to do. Anyway, I just want to say one last thing; You guys are incredibly strong. I only have a little more than 6 years until 20. If I had CF, I'd be counting down the days. I'm doing it anyway. I don't want you guys too. I want you guys to be happy and relax. Whenever I think about counting down the days I get a feeling of dread. So I'm begging you guys not to do it. Don't live with despair hanging over you. Pretending you know your life's limit won't bring anything joyful. And remember, Jesus is watching over you. This is not the end. No one knows how long they have, just don't be scared. You'll be going to another place. I also recommend to read the Bible. It can put worries to rest. If you're worried about the loved ones you'll leave behind, I have some great news: Jesus is watching over them as well. Have faith in him. God Bless You. Now, I am very tired probably because this took an hour to write and it's two in the morning. Goodnight!

Jamie said...

I still post and update my blog, I don't blog as often as I used to. Thank you so much for your comment. I am very happy that your diagnosis is not CF, however severe asthma is very difficult as well. Best of luck to! 😊

gabepatin said...

Hi, I'm going to post this because I have 2 sisters with CF. Tested in theIr 20's due to respiratory issues and then diagnosed. Peditrician apologized to my mom because he did not test them. Another doctor tested them and found out they had CF. However, they both went on to live productive lives with many infections battled along the way. My older sister's CF was affecting her lungs. My younger sister's CF has affected her sinuses. She suffers with coughing and sinus issues but not as bad as my older sister whose CF started to affect her pancreas, as well as her lungs.
While my older sister battled one lung infecton after another throughout her life, she also suffered from pancreaatitis and was sometimes hospitalized several times a year. As she grew older the CF started to ravage her lungs with horrible infections. Pneumonia being the worst of the hospitalization because she would cough up blood with this infection. Then after coming home on a pic line, time and time again, the damage from the infections took a toll on her lungs leading to her having to go on oxygen full time. She declined quickly after a bad pneumonia infection. 10 months after this infection her lungs were functioning only at 20%. 6 months after the pneumonia infection the doctor told her he could not do anything more for her. She cotinued to live these past months coughing around the clock as she always has but having a difficult time getting the mucus up. Leading to a hospitalization with another pneumonia this September 2017 the doctors said she should now be made more comfortable because she is not likely to make it out of the hospital. She was able to come home very weak, no energy, not able to walk far, no appetite and a significant weight loss down to around 75 pounds. She did not want to give up at all and even walked on the tread mill to prove to herself she wasn't going to let CF beat her. Two days after walking 6 minutes on the tread mill and me waving good bye to her, the Lord called her home on Sunday alone in her home. How sad this has made me. I discovered her passed away on her couch.
She was the oldest CF patient the doctors have ever known in the New Orleans area. She's out lived her life expectancy. She passed at the age of 56 but alway said CF didn't beat her that she beat CF.

If I could give any advice to a CF patient, it is this: Wear a mask when in crowds, the grocery line especialy at parties where you are exposed to a lot of people who could be sick but still decided to go out with the flu or a cold or some other illness. My sister caught pneumonia at a Christmas party because someone thought they were well enough to go to the party but they were still very contagious. DON'T KISS PEOPLE AND DON'T LET PEOPLE KISS YOU ON THE CHECK. I DON'T CARE WHAT ANYONE SAYS BUT GERMS DO SPREAD, ESPECIALLY A VIRUS.
GOD BLESS ANYONE READING THIS WITH CF AND REMEMBER IF YOU TAKE CARE OF YOURSELF YOU ARE LIKELY TO OUT LIVE MY OLDEST SISTER. HAVE FUN, DON'T WORRY AND ENJOY THE LIFE THE GOD LORD GIVES YOU EVERY DAY THAT YOU TAKE YOUR NEXT BREATH NO MATTER HOW MUCH A STRUGGLE IT IS. THAT IS WHAT MY SISTER DID AND SHE SAID SHE LIVED A FULL LIFE WITH NO REGRETS. I LOVE ALL YOU CFers and WITH GOD ALL THIS ARE POSSIBLE. WE SERVE A MIGHTY GOD. DON'T TELL GOD HOW BIG YOUR STORM IS ......TELL YOUR STORM HOW BIG YOUR GOD IS. IN JESUS NAME I PRAY FOR ALL OF YOU!






Where to start to learn about my transplant!

Thank You for taking the time to read my blog. I am hoping that through this blog and my experiences that I can bring hope, faith and strength to all that may be living with Cystic Fibrosis, CF with Cepacia and Lung Transplant recipients. Information and blog entrees start Nov. 07. My Double Lung Transplant was on Dec. 10th 2007. Please feel free to read about my experience and ask me any questions! My email address is jamiebug77@gmail.com

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My Testimony

It's hard to put into words how I feel toward my Heavenly Father and the Savior. I have so many reasons to be thankful for what I have gone through & endured. Because of my trials in life I have gained a strong testimony of Faith. I have always had Faith in the Lord and in Prayer. As I faced the decision to get a double lung transplant I had to rely on faith to make the choice.....By listening to the spirit, I was guided to Pittsburgh where my life was saved. I believe prayers are answered. I have always tried to follow the philosophy of this: If I do what the Lord expects of me, he will give me what I want & need. That has always worked for me. I Believe in MIRACLES..........My life on this earth is a miracle- I prayed on my knees for years to be healed from my lung disease. I knew that through a priesthood blessing (if it was God's will) I could be healed. So many times I thought he would heal me instantly...my faith was tested as I continued to get sick and no cure was in my future. I turned to prayer....I talked to my Heavenly Father, I cried to him and he heard me and he healed me by guiding me to Pittsburgh and guiding the surgeons hands. I learned humility, and thankfulness. I realized that we need others to lean on and we are supposed to strengthen each others testimonies. I learned that the hardest things we'll do are usually the greatest blessings in our life. I was able to experience a lot of things during surgery and I know I had comforting angels in my ICU room. THe Lord knows each of us by name and he will never leave our side. We need to remember to stay close to him and have Faith that he is watching over us. I know this for a fact! I know that following the gospel will bring us true happiness- the world will tell us otherwise, but I know I am truely happy & living the gospel has brought me that. Amen