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I am praying for healing and a breakthrough in finding the meds covered.

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ORIGINAL: brooklynsblessed1

A few updates the nurse did come on the Fri. mentioned & I began w/ 3 breaths of TYVASO 4xs a day...she came again Tues. & raised it to 6 breaths. Next week we may go to the max of 9..my only side-effect is an occasional cough; she advised gargling afterwards which I will do.

I initially said the cost was $40,000 a year; change that to $18,000 a month-unreal-but because Pulmonary Hypertension on the Lungs is so rare---the cost is so high, & not headed towards generic in the near future.

Next week, I'm going to try & hustle to see if I can get it for the same copay in Fla..but so far no one will commit.

Yesterday I met w/ my PCP & Liver Specialist we reviewed my recent labs which were generally fine; my MELD (measurement to qualify for liver transplant-thank God is low-no need to place me on the transplant lists) it remains at 12---and if need be they will refer me to the pulmonary specialist at Mt. Sinai's liver transplant team. W/out the TYVASO working I would be ineligible for a transplant (another bummer).

I am guessing that if I am delayed for an undetermined time in moving, I'll discuss at least being w/ my family for Christmas.

I do believe in prayer and will get some more folks praying (ie Brooklyn Tabernacle+++ prays for 30 days by name & need-before I hired a person in the past, before that he & his wife were at the all night prayer band there, & she remembers me being prayed for as she worked w/ me at the youth shelter--of course one can remain anonymous or 1st name) & I have plenty of ministry & pastor friends from my coordinating them; & my old church's involvement w/ the homeless.

I am praying for healing and a breakthrough in finding the meds covered.

Rick/Ps. 118:17

Doesn't the Bible say God will make a way???

+++ http://www.brooklyntabernacle.org/visitor-center/

Greetings, just a quick update, am doing well on the Tyvaso the medication for the extremely rare pulmonary (PHA) problem, the small machine that disperses medication 4xs a day for 2 minutes via a nebulizer is working fine & I have identified a way to get the 18K a month paid for if I move to Pensacola in 2011.
My liver meld-the determination of when one might be placed on a transplant list for a new liver remains LOW...as a matter of fact it is lower than the last time...but I am now awaiting word from my liver specialist as to last week's labs.
Lastly TODAY I AM GOING TO HAVE MY HEART VALVE LOOKED AT; With an echo w/ dopler...pray that it will show no damage due to the rare condition of having high blood pressure in my lungs...a reading that can only be taken via an invasive heart catherer, that they will only do once a year.....
I will fill you in more as I am making an unexpected last minute trip to Va....& need your prayers for:
1) A good echo look at my heart valve today in Manhattan at 2:45pm;
2) Good news today/this week from Dr. Gabe my liver specialist, & his saying that there's no need to put me on a liver transplant list as the labs look good. It looks as of last month like I might not need to be on a list for quite some time, praise the Great Physician!
Ricardo
Ps. 118:17

Illustration of the little machine that I will take w/ me to Va.
www.tyvaso.com

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ORIGINAL: godsgirl2

I am praying for you. I have a friend ( I haven't heard from her in a long time)but she
was healed of Hep C several years ago. She was expected to pass away any time but
God healed her in a blink of an eye!! Praise the Lord!!
I am believeing for your healing. I am praying and I am expecting to hear that you
are healed!!

In the name of Jesus I lift up this dear person to you Father and I just thank you
now for your healing power and that you still heal today and that you do miracles
daily. I thank you that we can come to you and lift this person up and know that
you hear our prayers for his healing. Lord I thank you for each stripe that you
took for this person's healing!! You paid the cost and I just ask that now this
healing would manifest in this man's body and that he will have one of the
greatest praise reports to share!!
In Jesus name
Amen

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As Brooklyn is known as the Borough of Churches, w/ services going on in many places 7 days a week, 3xs or more a day, I hope to be in church this afternoon*** thanking God & looking for a complete turn of events near the start of 2011!!!

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Rick (brooklynsblessed1), I'm glad you keep up updated. and we will continue to pray.

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And now back-to-back Praise Reports:

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ORIGINAL: brooklynsblessed1

And now back-to-back Praise Reports:

As seen above the cardio & pulmonary specialists based on an echo couldn't state 100% that the pressure in the valve to my lung which was risky back in June; and would disqualify me if I needed a liver transplant (which I don't at this time)...has perhaps gone to no pressure. They will call it more accurately in 3 mos; next echo. But that was a fast response...Praise God!

And on Wed. I met w/ my Liver Specialist; all of the labs were basically fine & as a matter of fact the test called MELD that determines placement on a transplant list is going DOWN, as opposed to up..it for years was around 12 & is now 8. The MRI also showed no major changes since the last one...the Hep C & cirroshis would of made many a patient go downward but w/ the prayers of many, & having the Greatest Physician ever...not covered on any insurance or by any govt...keeps me going....
Thanks so very much.

Rick
Ps. 118:17

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ORIGINAL: peaceofGod

Father,

Thank you for all that you have been doing for Rick, for saving his life and now for the HIV viral load being only a slight blip. Now, we ask that you relieve all pressure on the valve to the lung.

Please bless his sister with the availability of a compatible kidney and with a successful transplant, causing all to go well with no complications.

We praise you and ask this for Rick and his sister in the name of Jesus Christ. Amen.

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ORIGINAL: brooklynsblessed1

Thanks for the prayers; my sister-in-law in Fla went from Sat, until Sun.am w/ tests, preps and all--- but the kidney was too small; as not enough citizens donate though, I'm sure it was used elsewhere....

Trying to get it together to at least spend Wed. in DC at the US Capitol meeting new congressmen, women & senators & then later a reception w/ Sen. Mark Kirk, new elects and current members. My friend & I were going to do three days...but it may be totally scrubbed even...if I go, I pray for traveling mercies and won't take the strange looking TYVASO nebulizer, as it has liquid in it, etc. & as an orphan disease not many security people see such machinery. So, I'll do w/ out about three sets of breaths. It's not exactly the way the doctors want me to take it-but they know it might happen once in awhile...and my last echocardiogram showed great improvement in valve pressure leading to my lung. Praise God!
Rick
Ps. 118:17

www.tyvaso.com

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ORIGINAL: brooklynsblessed1

Just a quick update; doing well w/ the valve pressure leading to my lung---will do a heart catherer soon--as it's one year from the initial one; & believing that pressure is NORMAL.

Today (Sat.) I have a 5:30 pm liver MRI @ Roosevelt Hospital; this too is one yr. after my liver specialist saw small spots on my liver..that always makes them worry about liver cancer. However my primary, a liver surgeon & the specialist after looking at the MRI, sonograms, etc...thought it might just be a build-up of iron, which I've had before.

I am praying that it will not show any change, & that the spots may have disappeared....

Please join w/ me..NO CANCER.

Ricardo
Ps. 118:17