I have IPAH, COPD, Diastolic heart failure (mild), MGUS I also have Antiphosphoipid antibody syndrome. 

My question is whether anyone has Antiphosphoipid antibody syndrome and or MGUS and  went through the evaluation with no problem? 

I've been looking around the sites and haven't found a mention of these two diseases? I was looking for a search box or archives to look this up but being new I am still floundering about. 

Nan of CA

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  • 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

  • Hi Nan

    If you go to TransplantBuddies.org click on search (top left of tool bar) you will find a few posts on this page.

    Take care of yourself!

     

    • Thanks Ris'e! It was quite helpful to know a couple went through with transplants even though they have APS. 

      • Awesome to hear! That is what I am here for.

  • I don't think they would have you go through the pre testing if any of those conditions in itself would disqualify you for a TX.

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