Friday, May 15, 2015

The Beauty of Second Opinions

Unfortunately, yesterday's fifth embolization was not a success. There is one last massive vessel that looks like it could be causing the remaining bleeding. They have tried to access that vessel both last Friday and yesterday, but they cannot get to in a way that they can safely embolize it. It's in a less than ideal location, off the subclavian artery, that makes it risky if they cannot get exactly where they need to be to release a coil. As of now, our hospital's IR team seems to think they cannot do it, and is suggesting a transplant. We do not feel that the logical next step is jumping to transplant...seems like we should work a little harder to fix his current lungs (which sit at 72% lung function as of two weeks ago) before ripping them out and throwing in new ones. For us, we believe second, third and fourth opinions, off site, are necessary as other teams at our hospital, like thoracic and vascular surgery, are unwilling to take the case (at this point). Additionally, we would not choose this hospital to be transplanted at, so all in all, this isn't the right place for us for any of our next options, as much as we love our CF team.

So right now we are seeking second, third and fourth opinions from different docs/hospitals across the country to get their thoughts on logical next steps. We believe that sometimes it just takes the right person with the right skills and knowledge to fix certain problems at the right times, and do not believe that this IR team is the best we can find to fix this problem. We are so thankful that things have settled a bit and that the bleeding is so much less than it was, giving us the luxury to look around for second opinions while it is not life and death. We are choosing to rejoice in small victories, like that, as we continue down the road to recovery...hopefully with his lungs!

Specific Prayer Requests:
- No more bleeding. Boom. I said it. Let's just get bold and ask that God does the healing. We know that our God is big. We know that He created the very process of clotting. Join us in boldly asking God to clot off the area the blood is coming from.
- Good second opinions. We don't care what they are, we just want options. We know that God has gifted people in very unique ways. We are hopeful we can find the person who God has specially equipped his/her hands to fix this problem.
- Peace and patience. We understand that much of this is out of our control at this point. We will continue to do what we can, and pray that we feel at peace about what decisions and next steps we need to take.

Thank you for joining us, arm-in-arm, on our journey. Prayers are the best way to support us and the best medicine!

Comments (16)

Loading... Logging you in...
  • Logged in as
Ronnie and Mandi - sharing your journey as you do inspires my family greatly - and Ronnie's positivity has always been a blessing to families like mine. We join your petition to Our Lord and ask for healing and peace in His time and in His Name. Prayer and love to your family.
1 reply · active 516 weeks ago
Thank you so much for the prayers Penny!
Xa Johnson's avatar

Xa Johnson · 516 weeks ago

Ronnie, We worked with Dr. Vaughn Starns, who was, or is the head of the Thoracic Surgery department at USC. He was the first Surgeon to do a living lobar transplant. He was Wellesley's surgeon. USC may be a place that you look into for a second opinion.

I will check in with my son in San Francisco. I don't know if UCSF might be a possibility. They do wonderful things there. That is where Dwight did his Anesthesiology residency. Those are just a couple of ideas for you.
1 reply · active 516 weeks ago
I have been lurking for years. Now I'm praying.
Praying for you both during this difficult time. You are a rock in our CF community. But right now we are rallying behind you and pray that you will be pointed in the direction that is best for you. Being patient is extremely hard right now, but good things will come and you will get a sign to show you your next step. ((Hugs))
1 reply · active 516 weeks ago
Absolutely. I appreciate the support Leah.
Sandy Hollin's avatar

Sandy Hollin · 516 weeks ago

Have you checked Penn or Temple in Philadelphia? Philly has great medical centers. All the best. Let's hope an answer is out there.
1 reply · active 516 weeks ago
Thank you Sandy.
You're right Deb,our God is much much bigger! Thank you so much for your prayers and concern :)
Ronnie, You are so right - our God is much bigger and does have the perfect plan in place! I will pray for travel for 2nd, 3rd, and 4th opinions if necessary! I KNOW God has the right team in place for you! I pray you can see them soon! I agree at 72% lung function - it doesn't seem like the necessary time for a lung transplant! Praying Praying!!
Piper Burch
Ronnie/Mandi - can you get in touch with me. Tried the numbers I have for Ronnie including cell. Nobody is picking.

Mandi can you call me. Steve Hays is head of Lung Transplant at UCSF, he may also handle complex non-transplant cases. Ronnie our mutual friend Mona Luke has worked closely with him. Trying to get in touch with you so that we can arrange to at least get Steve's opinion he can also put us in touch with head of Thoracic Surgery at UCSF. As per Mona they are very highly rated.

Anybody have Amanda's mobile number please email me makodiyan at gmail.com
where are you now?

Post a new comment

Comments by