How did your decline go?

[static]

The changes in how I'm feeling overall since my last hospital stay feel drastic, however right now my numbers don't really reflect that.

I'm the past usually what would happen would be I would suddenly get sick with something (cold, flu, whatever), cough a ton, get to my couch out of breath then realize it's time for a hospital stay. Get tuned up then good to go back to my usual routine.

However, my last stay wasn't like that. I never really got "sick", I'm fact I was barely coughing at all besides when I really forced myself during treatments. I went in because of a really heavy sensation on my chest, and after looking it up I guess it's called angina pectoris. I went in, did the regular I.vs, but it took a while for it to go away. Now a few months later I am having it again, only this time after walking for a quarter mile or so. I fear it won't be long until I feel it constantly again.

My fev1 hasn't changed much, still between 50s to 60s, However I really have to work now to get anything up. I used to run back in high school so the best way I would describe it is trying to do your best time every single treatment (as far as mucus production goes), mornings I get close but by the end of the day I'm just beat.

I am just curious if this is similar to your decline pre tx. Was it sudden or drawn out? Did you experience Any of what I described and if so could you do anything about it? Any replies would be greatly appreciated.

 

[believingjesus]

Static: I know nothing about pre-transplant but I was wondering if the doctor knew why this happens? I read you looked it up to see what it is called. I agree that you need to get as much mucus out as possible and so does my son even though he never coughs up much either. I know everyone on here says to check for diabetes but that is a very real problem so did you get that checked?

I am not skilled at taking everything a day at a time and I struggle with this each day but all we all really have is right Now, this very moment. All we can affect is this moment. We are not in charge of the future mostly so that has always scared me but I have been trying to take it not just a day at a time but a moment at a time and do all I can in this moment and enjoy what I can in this moment and the future is out of my hands except for what I managed to change in this moment. Someone very close to me has been trying to help me learn this. What you can do to possibly change the future as far as your health would be, of course, to increase your treatments and possibly try a different device in addition to the airway clearance device you currently use, and to exercise as much as you possibly can - all things you already know. The Bible states this to take it all a day at a time as our life is as a vapor that appears for a little while and then fades away. My dear friend also told me about a book called "The Power of Now" by Eckhart Tolle which I read a few pages at a time as it is very mind-blowing but maybe these two books will help you like they have helped me. I am very sorry you do not feel you are doing well and that you feel a decline may be coming. Your lung function is still very good though!!! If you want I can include you in my prayers.

 

[imported_Momto2]

I was very sick as a child, then at about age 10, started to do a little bit better. Had another bad phase around 14-17, then did much better. Kept my FEV around 80-85 until late 20's, when I started breaking ribs from coughing. Also became a parent then. Over the next 5 years or so, there was some decline, to about 75%. Another child. Fev over the next 6-7 years dropped to 55-60% while I was in my mid to late 30's and I had to give up competitive riding. Stayed fairly steady there. Developed CFRD around age 42/43 which went undetected for a while. During that time, dropped to low 40's FEV. Here I sit for the last 6 months, on oxygen at night and for working out. I was never "sick" or had an infection the last year or so, its all been inflammation damage from asthma and diabetes. And I have always been 100% compliant with meds, excellent BMI. At 55% FEV I could still do a traithalon. Now, not a chance in hell. And I just cultured PA, which I havent had since I was kid. Bummer. So, the quick answer is that regarding quality of life decline, it has been pretty quick, from doing whatever I want (hiking mountains, whitewater rafting, extreme ropes course, running road races) to being pretty limited (I can walk a couple of miles w/oxygen or play a round of golf, but it all exhausts me) in a matter of about 18 months. There you have it, hope the info helps.

 

[GoryLori]

I feel I am blessed as my CF decline has been gradual AND I have outlived both my siblings! I was listed for transplant but then had antibodies that proved insurmountable to tx. They said I had less than 2 years to live and that was 7 years ago...but I am not a super hero or a well person. There are days when I am bed bound because the sheer energy it takes to just get up an toilet leaves me very sob and distressed, and that is when I am using 10 lpm of Oxygen! Many times, I feel even the supplemental O2 does not take away my profound sob...so why use it at all?? Probably to keep me coherent and to lessen the horrible C02 headaches I get when I am off the O2. Then I have delightful days, when God smiles on me and I get up and can do many things...but these are not the normal things healthy people do. I don't run, do marathons or get physical, but rather just crawl alongside at my own pace to get things done. In all, I am blessed I am still alive, so why sweat the small stuff??
My Fev1 is 24% and I seem to be able to function on that. I typically endure 4-5 inpatient tune ups annually, and sometimes I come home from a 4 week stay as badly as when I went it! As in none of the IV cocktails even hit up my nasty CF bugs....it's a crap shoot and CF is doing its job, which is to kill the host: ME. I am working up the guts to DNR my care, which is to have a Do Not Resuscitate order on my chart so if I am dying, to not thump my chest to shock me to live, preferring to be sent home to Heaven to begin my next journey.

 

[static]

Thank you all for your replies, and believingjesus prayers always appreciated.

Sorry it took me so long to reply, I'm the type of person who usually tries to reflect on responses before posting. Thank you for sharing your personal experiences, it really does help and give me more to think about.

I agree living in the moment is extremely important, it sounds like that is a good coping took I'll need to get better at.

Imported_momto2 After reading your post I think the inflamation might be at least partly to blame for my decline as well. I've been on azithromycin M W F for a few years now but maybe that just isn't enough anymore. I was just hoping they would catch a number decline first and get a chance to fix it (as long as it wasn't scarring), wishful thinking I suppose. I guess It just goes to show CF is very complex and fev1 is only one indicator.

Gorylori I'm also thinking about an advanced directive which includes asking about DNR. Our hospital is trying to get everyone to fill them out, even the doctors. You just never know, but I thank you all for the advice to not sweat the small stuff and live in the moment. Something I can work on

 

[believingjesus]

I'm glad you are feeling better Static! I'm happy you realized not to sweat the small stuff and to take it a moment at a time. Like I told you, this has really helped me when I worry about the future. I have been trying to redirect my mind to right Now. I do whatever I can in this moment to change that worry and that is all I can do. Then I try to enjoy that right now there is something good I can be doing for others or something I could be enjoying about life. My friend has helped me to see I need to do things for myself too. So just enjoy every single moment and be happy in this moment and do all you can right now as that is all any of us have anyways.

In addition to that - I know this may be something that makes my opinion different than others on here but in my opinion you do NOT need to worry about a DNR. You are doing so well and I would concentrate on that, not "what if?". I will add you to my little list of people I am praying for and as a matter of fact I saw this last night and already prayed for you once for good health and that God would help you and I will continue to do that.

 

[believingjesus]

I also want to say to GoriLori that I admire your strength and courage. You have faced many difficult obstacles in your life that you did not deserve. I admire that you see the blessings in your life even though you are going through such tremendous difficulty. I am sure you already checked into this but I had heard a long time ago that Duke would not consider transplants on people with the "worst" bacteria. UPMC in Pittsburgh, PA will and I didn't know if you had tried there? I appreciate that even in your circumstances you know you are blessed. I'm also glad you know where you are going when this life is over, that is huge. Know that even in your circumstances you have helped me to see that everyone should count their blessings like you.

 

[GoryLori]

I could be a miserable CFer who hates everything...I know people like from my online social groups, but for me, I am blessed I just have CF. WHAT?? How can I say that?? Well, there are so many other diseases and conditions which are much more dreadful and horrible than CF, and so I am grateful I only have CF and not another wicked disease. I also am grateful that I woke up today. When people offer me a dose of pity, I tell them... today people will die, and I don't expect to be one of them, so nothing else could make my day be so terrible that I hate CF and my life, and in the grand scheme of things, have CF is NOT the worst thing in my world. YES...it is a constant, daily challenge, and I have more bad days than good, but I am reminded God loves me and I am His child, and when this CF bodies takes its last wheezing breath, God will reach down to me and call my name. Next stop: Eternity in Heaven. Hey, at least I KNOW for certain where I'll be and my body will NOT have CF or be afflicted by ANY disease...count me ready!! Until then, I cough and struggle just the same as you do. We are in this fight together.