Friday, April 9, 2010

A little disheartened ******Edited

After reading a few comments left on my facebook, I am starting to feel crucified because my FEV1s pre-transplant was 37%. I was very sick and my lung function numbers did not reflect that. The surgeon even said so after the surgery. He told me I had been living on borrowed time with the lungs I had. My left lung was so glued to my chest wall that they needed to go back in after the transplant to clean it up.

My x-ray pre-transplant was so white and cloudy. I was on IV antibiotics 3 out of every 6 weeks. I lost a lot of weight. My oxygen dipped into the low 80s when I walk more than 50 feet. I feel that my FEV1s stayed so high because I did my vest 2 times daily for 30 minutes each, had an hour of manual chest PT and exercised for 20-30 minutes every day. I hope people realize I worked really hard to stay healthy before my transplant. I could of easily stopped doing all of that and let my numbers drop but I didn't want to risk getting really sick. I couldn't do any normal house hold chores. I was always out of breath. My lungs only worked if i was at rest. The rest of the time I struggled for every breath I took.

My cf doctor has many patients that had lower lung functions than me that he is not considering for a transplant because they were not a s sick as me. It is hard to explain my situation because it was out of the ordinary. It took me a lot of convincing before I would even consider being evaluated. Once I was evaluated and had a UNOS score my transplant team and Cf doctor continually talked to me about becoming activated on the list. I hope no one feels that I was undeserving of my transplant because I could blow out 1.11 liters in a second.

I know some of you CFers remember a few people that died last year while being evaluated for a transplant. Their lung functions were in the mid 30s. I know because I chatted with them often. CF is very unpredictable and when the lungs are done, they are done. The scarring on my left side actually spider webbed and trapped the mucus in my lung so it just stayed there infected while scarring the tissue even more. As I got closer to my actual transplant date, I felt worse and worse. I started running fevers almost every day whether I was on IV antibiotics or not. I have faith in God that these lungs came at just the right time. Most of my CF facebook friend have never met me or experienced my CF with me. My friends and family can all verify that I was sick and I needed this transplant.

I often asked my transplant center why my numbers were so high but I needed a transplant. They never had a good explanation so I can't give you one. What they did say was they would not transplant a person that did not need one. They would not list me if I did need to be listed and that UNOS would not give me lungs if my score was not high enough. I had to trust that they knew what they were doing and what was best for me.

****Maybe this is just me over reacting because of the prednisone and anti-rejection medication that is pumping through my body. Or it is me feeling guilty because I got a great new pair of lungs while i know of several others that are still waiting for theirs. Or this is part of the emotions the doctors and nurses told me I would experience. No matter the reason, I felt I needed to keep this post because it is part of this journey.

16 comments:

Diana said...

You did need those lungs! They were the miracle you needed. Well said honey!

Diana said...

You did need those lungs! They were the miracle you needed. Well said honey!

OceanDesert said...

Oh my goodness.. you absolutely deserved those lungs.. let those disheartening comments roll off ya, cuz people will say anything and not know you or what they're talking about...

Hugs Cyster!

Sandy said...

There's no need to justify needing those lungs! Your FEV1 is just a number and doesn't reflect your quality of life at all. I know it's hard not to compare yourself with other CFers or pre-transplant patients, but they don't give you lungs unless you need them! I struggled with the same issue when I was listed.

I'm so glad you got your transplant and you're doing well. Keep it up :)

BreathinSteven said...

Hey Beautiful Lady...

We are all very different people -- and we all have somewhat unique conditions and situations going on with our lungs...

Someone might have 40% "capacity", kinda implying that you can pull in and blow out 40% of expected -- but if your blood is not being oxygenated appropriately, and if you're not venting carbon dioxide appropriately -- that 40% means NOTHING...

Some of us CFers have a relatively high "capacity" but low function -- some have lower capacity with higher function...

My capacity at listing was between 10 and 15% -- and I was having carbon dioxide retention issues -- was I sicker than you??? Maybe, maybe not -- with that lousy capacity I managed to survive 31 months on the list... And very much like you -- I saw patients with a much higher "capacity" number die, while I survived...

Additionally -- some of us deal with metabolism issues and calorie burning because we're struggling so much with breathing -- that can be another factor in our ability to survive regardless of our capacity... There are just too many factors to weigh and we cannot easily compare ourselves to others...

If your surgeon and physcian had time to fully examine your lungs, and explain what was wrong with them beyond a simple measure of "capacity" -- you might have a better answer -- you might find out that you really didn't have that much longer to live with your 37%...

I'm glad you're alive -- I'm glad some precious person and family, at their most devastating moment -- chose to reach out to you and give you a good chance...

You're probably very right about your care regimine artificially inflating your numbers... I think I was in a similar situation -- for the 31 months I waited, we did four two hour CPT treatments daily, broke ribs during those treatments, and dealt with a plethura of other issues... I don't think I would have lived a month without what we were doing... You were so very lucky you had the strength to continue doing what you did...

Please get through this "disheartened" phase -- you don't deserve putting yourself through that... And if others are involved in implying that -- it's time to ignore them... A lot of us were worried -- you survived -- you made it -- we're happy -- you're happy -- stay there...

Love, Steve

Piper said...

Steven, you always make me smile. What a wonderful way to put it: you know your story, you survived and did what you had to do to be here, and we're all happy for you. Be 100% at peace with your road and your team's decision and leave the questioning to people with more time to waste on their hands -- because you'll be out LIVING ;)

I'm so glad I have all you guys. I wish I could get called tonight with all the positive energy I feel right here.

Kim said...

Steph, as everyone else has said, FEV1 is just one way to measure how we are doing, it isn't the ONLY way. There are so many factors involved and your clinic wouldn't have listed/transplanted you if you didn't absolutely need it. I'm sorry you feel like you have to justify your transplant, but please try not to worry and just enjoy. I'm so happy for you!!!! xo, Kim

Anonymous said...

Do not feel guilty as you needed and deserved those lungs. Noone has right to question otherwise. I am a mom of a CFer and am inspired everyday by adult Cfers like you! Your determination to live life to its fullest and not let CF define you inspires. Enjoy your new lungs and show CF whose boss!

Denise Fahr said...

I love, love, love the edited part of your post! You deserve those lungs. I'm sure you and many others know how prednisone works and Jim can attest to the fact that it puts me on a roller coster of so many different emotions that are so hard to control. And yes, I agree with everyone else; FEV1 is just a number!!! You enjoy every minute of those lungs and know that YOU deserve them!!

Denise Fahr said...

With April being National Organ Donation Awareness Month I posted on my FB profile:

April is Organ Donor Awareness Month! Hit the "Like" button if you are an organ donor! :)

This should help people realize the importance and remind them when they update their drivers license that the can change their option and become a donor (if they want to).

CFsteph said...

I am so glad to have all of you in my support group. it is nice to hear positive feedback from other Cfers. I hope you all know that I am here for you. I am a closet blogger and often read people's blogs without commenting. Thank you all for the kind words and trust me when I say I am 100% positive that I made the right decision by getting my transplant when I did.

Amy said...

I don't know what they said on your FB but that person needs to be deleted asap. You deserve those lungs! You earned them and anyone who feels differently should walk a day in the shoes of someone on the list!! I'm at 45% and some days I wonder who they are so high right now and others I can't believe they aren't higher. It's just a number :)

Screw them!! :)

CowTown said...

I don't know what happened either on FB for you to feel the need to post this. Everyone's experience is different, unique although the same pattern with CF progression. Of course it isn't just one person, the patient, who says I need new lungs now, and whala. Lots of variables and other experts are involved to run the show - not you or any patient.

It makes me sad to think just because you were at 37%, someone out there is verbally giving you a hard time about the lungs you just received. That's so odd.

Keep up all the hard work you're doing and I'm so happy for you!

Anonymous said...

I second what everyone else said...you needed those lungs, it didn't matter what your FEV1 was. Clearly your quality of life was so bad that you were listed...and I don't believe for a second that any center would list you if you didn't need them! Too many people look at numbers instead of the person...You enjoy those new lungs, your new life sans guilt and keep getting stronger!
Hugs, Jenn (JustDucky)

Claudia said...

You don't need to explain, those lungs were meant for you and you needed them!! Otherwise your doctor would have never put you on the list.
I am also a Cyster and although I am not currently on the transplant list, I know it will be coming in my near future. Your blog is such an inspiration to me and I will continue to pray that your new lungs treat you well! :)

-Claudia

Sherri said...

I, too, am a lurker and don't comment too often on blogs that I read...but my fingers couldn't be stopped from responding to your post. I am in the "Who me, a transplant???" denial mode right now since my doctor mentioned a couple of months ago that I should think about going in for an evaluation. I know that it is not something you or your team go into without weighing all the costs. In a small measure I can relate to being judged for not being a "normal cfer." I have heard from new docs, some nurses and nearly every respiratory tech the phrase, "Wow, you don't sound bad at all...you are moving air well," when I feel like I'm breathing through a straw. Only doctors who are familiar with me know when and how I sound bad. I even had one resp. guy tell me I had no business being in the hospital...I was so tight you couldn't even hear a wheeze. I was hurt and then I started doubting myself. My wonderful doctor assured me I was right where I needed to be and to trust in my own ability to know my body. So when people who don't know your situation say something off base or inappropriate...pause, and take a deep breath--cuz hey you can do that now!!!! :P

We didn't get this far by being a passenger on this ride; we are in the drivers seat on our own unique journey.

P.S. Been on steroids on and off for the past 20 years and continually for the past year and a half...I promise the moodiness does get better--smaller doses and time truly do help.