I am confused? Many mention Fev 1's in the teens and 20's at evaluation for the lungs and are listed? My Fev 1 is around 50 yet I cannot breathe, on oxygen 24/7 at 6-8 liters, DLCO less than 17 (estimate since they cannot read the true number) and recently use my rescue inhaler at least 4 times a day. I am also nebulizing twice a day and still cannot do anything including walking from one room to another. 

I am exercising as much as I can at least 3 times a week at low speeds upping my oxygen to 8 or 9..

I asked my pulm doctor why my saturation will show 95 and yet I have a hard time breathing?. My heart rate rises to the most 125. She said " it is the nature of the beast". I imagine she is referring to my emphysema.

The CT scan of my lungs is mainly black with scattered areas of what looks like white short squiggles (not a good word but just couldn't think of another) LOL Barely any air movement in the upper lungs and slight movement in lower. 

Back to the Fev 1? Do you think they look at my Fev 1 of 50 and think she can hang in there? I have such scary attacks I wonder if I'll make it. 

UC San Diego is sending the letter from my evaluation stating why I did not qualify. Once I get this I am evaluating at UC Los Angeles.

Breathe easy and stay well

Nan of CA

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  • Nan, what I learned at Rehab was the brain does not compute how high or low our oxygen levels are.  What the brain computes is how much CO2 (carbon dioxide) we are retaining. When you can not get the carbon dioxide out well you feel extremely short of breathe. It doesn't matter what our oxygen levels are. If you haven't been to rehab, that is a great place to get educated.  I would suggest you start using your diaphragm to push out that carbon dioxide combined with purse lip breathing. You tube has some great educational videos.  Maybe you are already doing all that if so, sorry. I have no idea what your case is and I'm not a medical doctor.

     My pulmonary doctor just referred me for a transplant.  That was after about a million different tests, pulmonary rehab, a serious bacterial infection and a hospital stay for respiratory arrest that just about did me in.   My FEV dropped down to 20%.  My oxygen levels remained in the high 90's (94-98) at rest.  When I exercise or walk around they drop and I have to use oxygen.  I use a oximeter to monitor my O2. 

    Anyway, back to the pulmonary doctor, he wasn't sure if my FEV  was low enough but he wanted to get the transplants team opinion. That referral has opened the door for an interview only. In the process of getting that scheduled.  Good luck to you. 

    • Shirley,

      Yesterday I signed up for cardio-pulmonary rehab. My insurance won't pay because it is out of network.

       I received a letter from my Family Medical Group who said no to a 2nd opinion with UCLA. There is nothing I can do right now because of the weekend and holiday.

      However I do have a question for you all. What if I just went to UCLA for the consultation with the transplant doctor with no "okay"? I do have Anthem BC HMO and Medicare secondary. 

      I plan on calling the coordinator at UCLA and ask the same question.

      I will also email my pulmonary doctor of the events.

      I'm really getting tired of all this ring around a rosy but hanging in there. .

      • GREAT idea!

        • I couldn't get an interview without a referral from my doctor.  I'm in Oregon and will go to the University of Washington.  They are the only one up here for Alaska, Idaho, Montana, Oregon and Washington. Good luck to you.  Rehab will answer so many questions for you.  I think you will love the experience.

  • Nan

    I had a lung transplant about 2 years ago.  My FEV1 has dropped from above 90 to 50 in the last few months.  When I go for my clinic visit I TT folks all the time that have a much lower FEV1 than I do.  I don't know for sure but at end before my transplant I think my FEV1 was below 20.  I use oxygen about 8 hours a day, primarily when I sleep.  I really don't need it but I use it.  I do everything in slow motion, don't want get out of breath, but I do sometimes.  I went to rehab and they taught me how to breath in a way that would raise my sat level more quickly.  Breath in through the nose and out through the mouth, slowly and never panic (we all panic)  You are right sometimes I can hardly breath but my sat level might be 92.  

    Friend,  Fred    

  • With all the talk of FEV1, many people are concerned with what goes into determining when a patient qualifies for a lung transplant.
    UNOS uses a Lung Allocation Score (LAS) to determine position on the transplant list, with a score of 0 to 100.
    Among the factors for your score are:
    FVC, PCO2, BMI, Age, Creatinine levels, 6 minute walk distance, O2 needs, and many more, including a waitlist urgency measure and your survivability post transplant, which have their own formulas.


    UNOS has some very nice booklets that describe all the factors and formulas involved in the LAS

    A Guide to Lung Allocation Score - United Network for Organ Sharing

    The following document states that the LAS calculation involves the following steps:

    1. Calculate the waiting list survival probability during the next year
    2. Calculate the waitlist urgency measure
    3. Calculate the post-transplant survival probability during the first post-transplant year
    4. Calculate the post-transplant survival measure
    5. Calculate the raw allocation score
    6. Normalize the raw allocation score to obtain the LAS.

    And it provides detail on all the steps along with sample calculations:

    Calculating the Lung Allocation Score - UNOS

    There is also a shortened form to perform an LAS calculation on the following web page:
    http://optn.transplant.hrsa.gov/resources/professionalResources.asp...

    • Thanks Jay,  Good info!

       

    • Wow Jay! If I did this right I came in at 32. Interesting stuff you always have or find.

      Thanks

      • When I was first listed, my LAS was 36, but they told me that my wait would not be long since I am tall (6'2"). At the time, they were not cutting lungs down for shorter people or children, and most people on the wait list were much shorter than me, so when a 6'2" donor passed, the short patients were not considered. My transplant center is in New York City, and a reasonable % of donors were taller men.

        • Well now what I need is to stretch myself many inches taller. Ouch!

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