I just had an opportunity to talk with Dr. Tarnoff and we are headed for the Fenestration within the next couple of weeks. Here is what we know:
- The cath is on hold. Any data collected in the cath will not change where we are headed. Riley will have a MRI on Tuesday to look at his pulmonary and hepatic veins. If they are not blocked, they will leave them alone. If they are blocked they will proceed with the cath and they will stent the blockage.
- Riley will have an echo early next week to look at his common AV valve. If it is mild-to-moderately leaky, they will leave it alone. If it is moderately leaky or worse, Dr. Karl will attempt to repair the valve during the Fenestration surgery. We want to avoid putting in an artificial valve because this leads to a life of valve replacement surgery because they do not grow and they often fail.
- We hope that we will be able to close the Fenestration in the cath lab months or years later. However, if they are able to close the Fenestration, there is no guarantee that PLE will not come back.
- We should know within a month of the Fenestration if Riley is tolerating the new pressures and if PLE is going away. If PLE is not resolved after the Fenestration, Riley will have his Fontan taken down and his anatomy will be reverted to the Glenn circulation.
- Riley is the first patient that Dr. Tarnoff has ever had who developed PLE.
12 comments:
I can not begin to express how sorry I am that Riley is going through this. My hope is that since Riley is the 1st patient Dr. Tarnoff has ever had with PLE he will also be the 1st patient to successfully recover from it. Our thoughts continue to be with Riley and his family.
The Sommers
HI guys,
I am so sorry to hear that Riley is headed back to the OR. My heart sank when I read the news. Of course we all hope that a fenestration will take care of the PLE. I was confused, though about why they are opting to do the MRI and not the cath. I'm sure I'm just being ignorant here, but don't they need to take a look at Riley's pulmonary pressures to see if they're elevated? Can they assess any blockage of the pulmonary and hepatic veins in the cath lab and just forego the MRI? I was just thinking that if they were able to do everything in the cath lab and find blockage of either or both veins, they'll already have Riley right there to put in the stent. I am sure the docs are on top of this and are trying to save Riley from any unneccesary procedures.....just thought I'd ask. You continue to be in our thoughts constantly.
love,
Gwynne
Our thoughts and prayers will be with you all. Thank you for the update jack. Will keep all our thoughts positive again for Riley's safe return home. All our love.
I guess we could all see this coming, but it's still a shock. My heart goes out to all of you. This doesn't seem fair after what you went through last year.
Did any of the doctors mention Sildenafil as a possible treatment? I only mention it because it seems to be a fairly recent development in the treatment of PLE (all references are from late 2006), and it might be an alternative to fenestration. Sildenafil is better known as Viagra - a commonly-used drug with a not-so-bad side effect profile - so it might be worth a try.
But if it has to be fenestration, then at least it offers hope for correcting the PLE, even if the thought of another surgery is horribly painful. You are such a strong family, I know you'll pull through this.
You continue to be in our thoughts at every moment. We pray for the surgery to be effective and "cure" the PLE. We are there with you in spirit, even though we are unable to be there physically. We love you very much and continue to pray for wisdom and health. Love, Auntie and Stephen
We continue to keep Riley and you all in our daily thoughts & prayers...Words cannot express how sad we are that Riley is going through this...We pray for Riley for his continued courage and strengths, and for healing through this!
We are so sorry that Riley has to go through this again. We feel so far away but know we are with you all in spirit. Our thoughts are with you 24/7. Hugs to all. Love and prayers from the whole family in Mass. too.
Grammy and Wayne
Well we'll see what the MRI and echo show next week.
They can measure some estimated pressures with the echo machine (through the magic of physics and looking at flow rates and doppler imaging can estimate pressure gradients).
In the mean time, look into the Sildenafil. Many times we just use that for pulmonary hypertension (and yes erectile disfunction for those keeping score..hee hee), but this article is at least worth mentioning to Tarnoff or his team for medical rather than surgical management options.
As far as the valve replacement goes. Depending on if they place a mechanical or bioprosthetic (Pig) valve. Mechanical last very long(>20yrs) but require anticoagulants (Coumadin) for the rest of their life, where as bioprosthetic don't require the anticoagulants, but last about 10-15yrs.
Hopefully he wont even need to deal with this situation.
Thinking of you guys and hope you can get some rest.
-Dave and Marisa
Just know that our thoughts and prayers are with you.
Eva and Bill Nelson send their prayers daily to you all and the little slugger. Also please have Grampy/Jack check his email when he can...Will Nelson
I'm thinking about you guys. Good luck, Riley.
Suzanne & Ken,
I'm so sorry to hear that Riley is experiencing difficulties again. I know this must be very hard on all of you. I will keep your family in my prayers in the coming days and weeks and pray specifically that the fenestration will bring down Riley's pressures and that the PLE will disappear. God Bless. ~ Laura Mulder
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