I'm scared and need some reassuring.

[Lena Bean]

Most of my life I've been a lucky CFer. My baseline FEV1 % ranged in the 90's and I even got it up to 114% when I was a junior in High School. I'm not quite as lucky anymore, and I'm only 21. In the past year I haven't gotten my FEV1% higher than 79%, the lowest was 49% and Friday was 52%. I'm on IV's for the third time in 7 months. And I started dating the love of my life just about 7 months ago, seriously, we started dating a day before I found out my FEV1 was 49%. I've been told I have a fatty liver and am working on getting to a specialist for that. And I have gone through two jobs so far this year, the second I just had to resign from on Friday. My doctors don't want me working full time anymore, and I hate that I agree with them. My parents are moving three hours away to be near my sister and to make things easier on my sick mother (I can't move with them because it's a big city and I always get really sick when I go there for more than 2 days, without fail).

Anyways. I'm terrified right now. I really need some support that I can still have some hope of living the life I wanna live. I want to be a Mommy some day, and I'm scared that won't happen, or that I won't live to see my future children graduate high school or college or have their own kids. I'm afraid that I'll always be relying on my loved ones to take care of me. I'm afraid I'll never get to leave my country. I'm afraid I'll never have the lung capacity to run or ride a bike again.

And I have been losing friends a lot in the past couple years because I've been getting sicker. They are all out partying and being 21 and I don't have the energy or time to keep up with them, so I've just fallen to the wayside, and sure, I have my boyfriend, but I'm still so lonely. Most of them won't even make the time to text me anymore. I feel like I don't even exist to most of them anymore.

I just don't know how to give myself hope now. I have been so depressed lately, and I just don't know how to keep myself from freaking out. I've been such a mess. Can someone please give me some encouragement? I really really need it lately. I just don't know how to handle this right now.

Thanks to anyone that read through that novel. Seriously, it means a lot.

 

[CrisDopher]

I know how you feel. I'm still a young man (41) and though my FEV1 hung out in the 50s for a decade, I'm declining more rapidly now (24%) and am actually afraid of what tomorrow's PFTs will show. I probably need to be on oxygen (sats in the mid-80s just from walking) and I guess I should bring that up with my doctor, too.

There's more questions than there are answers, aren't there? What is comforting, though, is knowing that while I MAY be looking at the last stage of my life (and need to get my affairs in order in the near future); it's PROBABLE that I'll be transplanted and that I'll have several more years of great, enjoyable life ahead. And you will too, I think.

Your friends are too young for you. They are still in a semi-infantile stage and haven't reached the stage of pyscho-social development that allows them to truly think of others first. They're still in the Fidelity stage of Erickson's stages of psycho-social development. They're kids.

You, however, are not. CF ages us pretty fast, mentally. Seek out people who are supportive and do keep in touch. Get involved online, certainly, and you will find a wealth of friends - always there, always supportive and understanding!

I know what you mean about being afraid you'll never run or ride a bike again. I share the exact same concerns. Running is a non-starter for me at this point - and that's after having completed two marathons! As for the bike...well, some days I can ride with the pack, and others I'm passed by everybody. And that's not a metaphor. But I CAN still peddle! I bet you can, too.

Cris

 

[TheDude92]

Being almost 20 I'm in your same boat. My CF has been mild to moderate. When I was younger use to post FEV's like you well now Im in the mid 70s to lower 80s and they been slipping some. It's just part of the illness. You're going to have a decrease in lung function over time. Trust me 20 years of wear and tear are hell on the body. Best thing you can do is just try to do some exercise and build lung function. Tread mill is a good one. I probably should practice what I preach but just staying active is one way to slow the illness down. Look I'm not going to lie having CF can have it's ups and downs. When it's in the downs it really rock bottom. You can either give in and just let it run it's course or you can fight it with all your might. I'll be 20 next month hard to believe I've put up the fight I have. I have plans in my life that I am going to accomplish come hell or high water. When you get kicked down on the ground get back up shake it off tomorrow is a new day. This year hasn't been kind to my health been through two month long hospitalizations and that was a hell of it's own. I believe what doesn't kill us makes us stronger. Do not let the fear of death pray on your mind. Instead look at what you have accomplished down the years. I look back on my life yeah it wasn't perfect, but I am going make life what it is and give it my best shot to accomplish my goals. I plan on being a train conductor as my career and that is something I am and will accomplish. Just remember us CFer's are a whole new breed of person. We have to be some of the strongest people on this Earth with the numerous times we have been to hell and back. Be thankful for the new day that you are given and be thankful for your life. If you like to add me as a friend on here I'll be more then happy to listen when you need a ear I am pretty good at listening. Hope this helps some. Stay strong

 

[TarHeelBlue2007]

Hi Lena Bean,
Sounds like you're in a real rough patch right now, which is definitely unsettling!

Responding to a few things you said above:

(1) "Anyways. I'm terrified right now. I really need some support that I can still have some hope of living the life I wanna live. I want to be a Mommy some day, and I'm scared that won't happen, or that I won't live to see my future children graduate high school or college or have their own kids. I'm afraid that I'll always be relying on my loved ones to take care of me. I'm afraid I'll never get to leave my country. I'm afraid I'll never have the lung capacity to run or ride a bike again."

--- I totally understand where you're coming from, and you're not at all unjustified in being afraid like you are right now. Having CF can be a scary, scary thing at times. Know that you have friends and supporters here, and that your docs most likely want to do everything they can to help you out. I'm training to be a health professional, and for someone that seems to have taken care of themselves as well as you have (114% FEV1, wow), docs really want to help you hold on to that, despite your recent lower numbers. I will say that most of what you want to do in your life is entirely possible, despite CF. Not everything is definite (eg kids, though adoption is always an option), but it is possible. I've been out of the country twice, once for 2 weeks to Europe and once for 6 weeks in China. Stuff like that takes planning, but it is entirely do-able. People like us may have to work those plans around our CF, but it doesn't necessarily mean that we can't do them. For example, it sounds like your lungs have been taking a few hits recently, and obviously now may not be the time to think about traveling abroad, but that doesn't mean you'll never be in a condition to travel, see the world, and have some fun.

(2) "And I have been losing friends a lot in the past couple years because I've been getting sicker. They are all out partying and being 21 and I don't have the energy or time to keep up with them, so I've just fallen to the wayside, and sure, I have my boyfriend, but I'm still so lonely. Most of them won't even make the time to text me anymore. I feel like I don't even exist to most of them anymore."

-- This is a really hard time for people with CF, let there be no doubt in your mind. People this age are transitioning from being fully dependent on our parents (high school ages) to being essentially dependent on ourselves (late 20s, early 30s), and that is doubly hard for people with CF. I also hear you w/ regard to friends "out partying and being 21..." In recent years it's been really really hard to stay out until 2am, even as infrequently as I do it. The good news is that it does get better, b/c a lot of people also hit that stage at some point, where they “just can't do it" anymore. I had dinner w/ a friend the other night while his wife was having ladies night, and he looked at me at 11pm on a Friday night and said "well, I feel old, but I need to get home and get to bed, or I will feel awful tomorrow." Trust me, that aspect of things does get better. One suggestion that I have for you is to see if you can still be involved with your friends in other activities...get together to watch a football game, for example, so you can still see them and have fun during the day and not sacrifice your health by being out all night.

(3) “And I started dating the love of my life just about 7 months ago, seriously, we started dating a day before I found out my FEV1 was 49%.”

-- This is awesome for you! Finding someone that knows about your CF, accepts it, and stands by your side is nothing short of huge! I suggest that you read a bit on the forum postings about how you and your love can work together against your CF. Chances are he really wants to help you with your CF as well, but may not know enough about what is demanded of us. There’s some good postings by people about balancing your SO’s desire to help without becoming (or feeling) like too much of a burden on them.

(4) “I just don't know how to give myself hope now. I have been so depressed lately, and I just don't know how to keep myself from freaking out. I've been such a mess. Can someone please give me some encouragement? I really really need it lately. I just don't know how to handle this right now.”

-- From what you say, it sounds like there is a real possibility that you’ve got some clinical depression, which is neither uncommon nor a surprise in CF patients, because of the emotional weight of what we deal with. I highly urge you to talk to your CF care team about everything you’ve mentioned here, and specifically ask to speak to the team’s social worker or psychologist, who should be well equipped to help you address these concerns. Speaking from the experience of having had clinical depression myself, it is a truly miserable experience, and it really takes some outside help to get out of that rut.

Everything you’ve said here is understandable for a person with CF, and I hope what’s been written here, by myself and others, helps you see that you’re not alone and that things can get better. Best of success to you, PM me if you’d like to chat further.

 

[PinkPigg]

Hey Lena,

I was in my early 20s when I got a massive infection and went into right heart failure. My FEV1 was a little less than 40%. I was also on O2 24/7 and listed for transplant. To get ready for transplant I started exercising at home. This was back in the days before they had pulmonary rehab programs. At first I couldn't do much but after a while I was doing light aerobics. Eventually I no longer needed O2 and was inactive on the transplant list. It was a very scary time filled with lots of anxiety. Losing out on spending time with friends made it that much harder. However, what did help was having the support of my family and the love of my boyfriend.

During the 20 years since that time, I've been out of the country many times, taken more trips than most take in their lifetime, worked as a tax manager at one of the big four public accounting firms, chaired a CF fundraiser for the last 14 years, etc etc. Fifteen years ago I also married my boyfriend at the time. He is my rock and is always there for me. He's what keeps me going. We chose not to have children but do have two wonderful dogs. I also have many of the same friends too and we see them frequently. Our lives are very full and wonderful. Three years ago I retired on disability to take better care of my health. My FEV1 has declined to 25% over the last 3-4 years. I've been using O2 (the last 3-4 years) but have only needed it at night until the last few months. Duke will be doing at lung tranplant evaluation of me later this month.

I've learned along the way that exercise has made a huge difference for me. I highly encourage you to get involved in some sort of a regular exercise program. I really like yoga as it has helped me learn to breath more effectively and be able to calm myself down when anxious. In terms of mental health a counselor/social worker/etc is a great idea. It's really nice to have an outside person to listen.

In terms of friends the ones that are with you through it all are the ones you want to keep. If you can't go out to the bars etc then maybe you could make it to have lunch or dinner with them. Or maybe the could come over for movie night once in a while.

Keep on trying. This might just be a bump in the road for you.

Peace,
Steph

 

[welshwitch]

I totally second the social worker/counselor idea. This is totally fine, totally acceptable to do if you have CF. When I was 27 I kind of went through a major "freakout" about CF and the avalanche of fear I was experiencing. All very similar to yours.

I went and talked to a professional who specialized in chronic illness. She gave me a toolbox, strategies to handle everything I was feeling, and most of all, helped me to face what was going on.

I'm now almost 33 and my CF fear is still there, but instead of paralyzing and overwhelming, is more of a buzz in my background. Most of it was learning acceptance, but also finding new things to make me feel in control of my health. I started running marathons and 100 mile bike rides when I was 28, and this helped a lot to feel like I was in the driver's seat.

Bottom line: you're not alone, and this is a hard, hard thing you're going through. Hang in there.

 

[dwooster]

Hi Lena,

There is good reason to be optimistic about possible treatments coming down the pipeline soon. I did CF research while in graduate school for 7 years and I still keep up on the latest CF findings even though I'm teaching now. The link below sounds especially promising.

http://www.sciencedaily.com/releases/2012/07/120713122947.htm

It's a peptide that apparently works quite well in vitro (cell culture flasks) and I think it has real potential for the clinic. Hang in there. It's just a matter of time before CF becomes completely manageable.

David

 

[running4life]

This was very timely for me. I just went to the doctor today where my lung function is at 83% and this is pretty much my new baseline. While I know this is great to be 25 and have it that high - I have always been in the 90 to 100%. I have been doing my treatments very diligently and working my ass to improve my lung function. I understand.

I have a great friend who encouraged me yesterday. She told me to give myself a few days of sadness and do whatever I need to feel better. After that, decide to rise up once again and fight this. You CANNOT let this defeat you or beat you. I too struggle with clinical depression and anxiety which is icing on the cake when going through something like this. My faith and relationship with God is what keeps me going. Seek to nurture your spirit. Do something every day to develop your mind, your body, and your spirit. Give yourself grace and allow yourself to be angry, sad, upset, or whatever it is you need to feel. I see a therapist on occasion and use to see him more when I was very depressed. Seeking wisdom and counsel from a therapist is a great help. You have a purpose on this planet whether you know what it is or not. Don't let yourself be defined by CF but fight like a warrior. You have the strength within you. Do everything you can to take care of yourself and trust God in the process. At least you will know at the end of your life that you fought like hell. Do not give up! Love yourself through this.

 

[Lena Bean]

Thank you everyone, so much. Seriously, the encouragement is helping a lot - it's reassuring to know people are and were in my boat and end up okay for a long time. It just is so overwhelming sometimes. But I can do this. But seriously, I can't thank you guys enough.

I just got admitted to the hospital for my CF because the Home IVs weren't going to well. And I admitted to them that I have been morbidly depressed when I got here. They're going to get me talking to the psychiatrists here at least. Which will hopefully help. When I get home, I think I am going to find a therapist to start going to, and I'm going to start doing the things I did when I was younger to clear my mind. I used to sew and bake a lot, and sing. I've never been a good singer, but it's always been my way of feeling better. So I'm gunna do it.

Again, thanks guys!

 

[welshwitch]

Great to hear that you have a "game plan"! Let us know how it goes And feel better!