Just a few hours after I posted the first message, I got the call from Methodist Hospital that they had a lung for me (I was the primary candidate). Pegi and I took off for Houston and made it from Lake Conroe to the Medical Center in 1hr and 10 min. That's flying folks. Got IV'ed up and ready to go when they came in and told me that I my anitbodies reacted against the donor organ. For those not inside the transplant loop, this is not something you want. So they turned me loose and sent me home. I hate to miss the opportunity for a lung because I don't know how long it will be until I get a second chance, but I definitely do not want a lung and then suffer severe rejection. So now it's back to waiting. This will also give me time to get the plasmaphoresis treatment I need to get the PRA count down. God has a way of completing things in His own time, not mine. This frustrates me to no end, but I still trust Him.
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Comment by david on March 29, 2012 at 12:53pm
Comment by Kathleen on March 29, 2012 at 10:18am I empathize with you Robert...the same thing happened to me. We are warned this does happen, but it is something erlse to experience that! It is an experience i will not forget.....the anticipation, nerves and all the emotions of knowing you will get transplant and then the letdown and disappointment when you find out it's a no go, but of course that all becomes unimportant compared to getting a lung/lungs that are not good or not a match for you. It's back to waiting for the right time!
Comment by T. Sepulveda on February 17, 2012 at 5:17pm How long have you waited for the CALL? My daugher has just been listed Jan. 10,2012. And so like you, we wait. Im sorry for you having to go home and not receive the first lung. They explained that very thing to my daughter and I. God has to prepare the perfect lung for you as he is my daughter. Im sure you have a story to tell everyone and in that Story, God is all over it, huh? Meaning, how he orgastrates your life, during this time.
I've posted a short video of my daughter Jenimaries Journey. Please check it out. It explains what's she been through, what we have been through, and how strong she's been through all of this. I made this to encourage others and to bring Donor Awareness to the people. Donate Life Californias campaign this year is to have 12 million new donors. I don't have to tell you, if everyone were donors, there would be no need for anyone to have to wait for any organ.
Please keep us posted as to how you are doing, and when you get the call. I am excited for you!!!! I will add you to my list of prayers. God Bless you.
It is so hard to be called in and so excited and then to be sent home. You will get your lungs, hang in there (although it is hard) as you said God has a plan. His/Her time is not always on our time. I always feel he has to move things around, so everyone has his blessings. Wishing you the best.
Comment by Sandy on February 11, 2012 at 10:35pm I had a dry run for my heart as well. It is better to get the good match! It is in God's hands and in his time. Faith will get you through it! Waiting is the hardest part in my opinion!
Comment by Sandra Barber Hughes on February 11, 2012 at 9:42pm Robert - I am so sorry, we also had a call for our organ, except ours was a liver and we rushed to the hospital as well. My husband suffered through all the testing, IV's, everything just to tell him that one of his liver levels was too high for the transplant and this one would not work out. It actually did work out for the better - We got a call a month later from a different hospital with a wonderful transplant team. Things have a way of working out. Hang in there!
Comment by Gilly on February 11, 2012 at 1:04pm Hang in there, i went through 3 calls, it will happen when all is good, trust your tx team.
Keep u im my thoughts!
Comment by Kristy on February 9, 2012 at 8:57pm Good luck! I can only imagine the frustration. I was at the hospital almost 24 hours before that actually did my pancreas transplant. They told me I'd be in surgery 10 hours after arriving. They wheeled me down 23 hours later. The whole time I was waiting they kept reminding me that they have the last say, and could always turn the organ away and cancel the transplant. I think i would have cried! But you are right, it all happens for a reason. . .and a better match, and a healthier you awaits! Best wishes!!!
Comment by Neil on February 8, 2012 at 10:27pm Robert, I appreciate you're sharing this dry run. I am listed only 4 months for a double lung and am number two on the list, so I imagine it will be awhile. I have thought that a last minute cancellation would be very frustrating, but you are so right, better safe than sorry.
Hi Robert
I am sorry you had a dry run. I had one too. IT is a good thing they found out about your antibodies so they can treat you now. I will keep you in my thoughts and prayers.
Take care
Rise'
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