I recently went through a 1st day evaluation for a lung transplant. The education session, finance then saw a Dr. Yung at UC San Diego. Dr. Yung was surprised to see I had MGUS! Bottom line he said I was very high risk due to my age (69), my wgt.(168-5'2), I would ge tmore infections from the immunosuppressants, I would live longer with my current FEV1 and other diseases which include APS, severe emphysema, chronic bronchitis, pulmonary arterial hypertention and MGUS. I tried to talk to him that I was in good physical condition from pushing exercise and that although my FEV1 was 50 and not below 20 that my DLCO was so bad it cannot be read accurately and CT scan revealed hardly any air movement in my upper lungs and very poor lower air. Needless to say he did not want to listen. He did say I should talk to my doctor about Rofumilast and 3 days a week on a low dose of tetracycline. I was shocked. After all he told me I wonder if I would make it on the table or 1 yr after?

I guess I am in grief waiting for my next appt. with my ph pulmonary doctor on the 16th.

Then I was admitted to the hospital on July 5th for an exacerbation. Ironic I thought. I am barely recovering now. 

Looking for opinions and wondering if anyone had MGUS before their transplant. 

Thank you for listening. I am so depressed at this point but know I will snap out of it. 

Hugs to all, stay well

Nan of CA

P.S. I'm new to this site and forgive me if I posted this more than once.

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  • UPDATE: I saw my ph pulmonologist Doctor yesterday and she hasn't received word from UCSD yet. The plan is if I am denied on paper we will proceed to UCLA and submit my papers for a 2nd opinion more or less. 

    In the mean time she (my doctor) is scheduling an IVIG infusion (Intravenously administered immunoglobulin (sometimes called IVIG) which contains antibodies collected from the plasma of healthy donors) to get some antibodies fighting especially since I got sick again.  She also ordered a medication called Roflumilast and a follow-up lab test on low thyroid. I felt much better after this appt. She is one of the best doctors I've known.

    Now the wait is still on. 

    • I hope you feel better soon and receive good news.

    • That good new about the antibodies to help u  and let's hope the wait is not too long.  If age is going to be a problem thane I might as well say to heck with it i'm 57 and about 40 lbs over but my problem is liver, I'm not on any list last time I saw a liver doc was over a year ago.  At that time he said my liver has heal some and may never need a TX.

      Good luck

      Take Care

      Prayers and wish r way all the time.

       

       

      • Duane,

        That would be wonderful if your liver continues to heal itself! The body is so complex and at times surprises us all.

        Best of luck. Prayers said for you.

        • Now they want me to keep a look out for Cancer, because of the liver. Not sure how that can come about, no history of it in my family.

          Prayer and wishes to u

      • Another way into an advanced program that might benefit you is to fit into a trial for an experimental therapy. Keep your eyes open for trials that you might fit into with your specific conditions! Also, I believe there are programs that use functional but sub-optimal organs for patients that might otherwise be considered unqualified by age, health, etc..

        • Alan,

          I've tried for years to get into a clinical trial. With my other issues was turned down. They sure can be picky!

  • Dear Nan,

    I didn't qualify at the first center I applied to due to damage to my esophagus from scleroderma. This disease is what caused interstial lung disease (fibrosis/hardening) and pulmonary hypertension.

    The second center wants to test me further and get to the bottom of what is going on with me. Whether I qualify or not there they want to help me have the best quality of life possible. My weight was not an issue for the first center but I have to lose weight for the second.

    Every center has different criteria so keep on trying. I have heard over and over again the University of Pittsburgh takes higher risk candidates. It is very far away from me but is a option. I doesn't hurt to try and each center gives you more information.

    Good luck!

    • Miocean,

      It is refreshing to hear a transplant center wants to "get to the bottom" of things. I pray they straighten things out and you become a candidate. 

      Hugs

    • Good luck to you too! It is refreshing to hear the second center is going to get to the bottom of things.,

      Prayers and hugs

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