First Informational Post

Patti Prince

This is the first post for Patti Prince. Following is the "latest" information as presented by Sally Iacovelli, Patti's Aunt Sally.

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All donations should be sent to:

The Patti Prince Benefit Fund, 58 Burrstone Rd., New York Mills, NY 13417

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Cleveland Clinic, Cleveland Ohio
June 26 and 27th, 2006

Patti had numerous appointments scheduled both days. This mentally and physically drained both of us. I need to add a personal note here and most of you will smile at this thought. She is amazing; I know I share this love for her with all of you. What she doesn't or feels she shouldn't expect is help. As a strong women and new mom, it is hard to ask for our help from family and friends. As a matter of fact she did not ask for my help, I demanded the authority to be her CEO until she was too tired to say no. Here are some of the million questions answered to the best of my knowledge.

1. Bottom Line: Double Lung or Double Lung and Liver?

A meeting will take place in the next week to determine if both the double lung and liver will be transplanted or just the double lung. There are many pros and cons which is why they are meeting. The double lung is a must and will take place; the liver is iffy right now. If she was evaluated for just the liver, it is not bad enough yet to consider, there are many others waiting whose liver is much worse. But as a first time transplant of both double lung and liver, Patti is a prime candidate. She is strong and strong willed, not allergic to many drugs, which makes her prime! (YOU GO GIRL!) Once the decision is made they will call us with the final decision.

2. The Ohio Board is contacted next to evaluate Patti's need and place her on THE LIST (additional 10 days).

3. So we are looking at about 17-21 days before is number one on the list.

4. Once THE LIST is established we can apply for all kinds of sponsors. (see 13)

5. CALL: Once the call is made to Patti they have organs. A call will be made to Gina and Dale and Joan. A call will be placed to Mary for the primary care of Brady. They will not make the next chain call until we know for sure that the transplant will take place or approximately 2 – 3 hours.

6. A jet will be sent from The Cleveland Clinic to pick up Patti and Muff in (hopefully Utica) the cost of the Jet is $3000.00. BCBS will cover some of this cost, unless it is a DRY RUN.

7. A DRY RUN is when the patient is flown to the Clinic and the lungs have deteriorated and cannot be used. Patti and Muff will have to rent a car and drive home. (5 times this happened to a patient last year before he received his transplant or $12,000 of uncovered cost) plus the rental car!

8. Surgery is expected to take at least 14 hours with double lung, if added liver we do not know.

9. Hospital stay is expected to be 12 days then released. Patti will be released to her CARE PARTNER, Joan.

10. This is what blew Patti and me away. The CARE PARTNER has to totally monitor the patient over the next 6 weeks. The medicine is crucial to recovery and the CARE PARTNER has the most dangerous job. The meds increase an additional 13 to 18 pills a day and Patti could react to any of them so the journal activity to each doses it critical to the patient's full recovery.

11. We can designate up to 3 or 4 different CARE PARTNER's to relieve Joan or just to visit and spend time with them. This job is a huge responsibility and cannot be a 3 or 4 day turn-a-round time. So if you can give a week to help the CARE PARTNER out feel free, but a week to partake is minimum.

12. Money Needed:

Jet 5 times (worse case scenario) $15,000. BCBS cover $3000.00
Hotel cost for 6 weeks CarePartner and Patti $4,500.
Food Per Day $20.00 each $1800. Total.
Needed Funds: Give or Take $ 20,000.00

13. Alas, we have tons of other needs you can help us with research:

• Holiday Inn Select - Discount Rates for a 6 week stay on 12 day notice?
• Budget Rent a Car - each dry run, return to Utica discount rate.
• Kitchen linoleum replacement
• Mold scrubbed out of the basement (infections)
• Collect change-some of the nieces and nephews idea...
• Garage Sale Benefit
• Boomer (Cincinnati Bengal's has a CF Fund we can also apply for)
  Benefit(s) to raise money for funding costs.
• National Foundation for Transplants= http://www.transplants.org/ is willing to help with funds, contact 1102 Brookfield, suite 200, Memphis, TN, 38119 (800)489-3863 or 901-684-1697.
• National Transplant Assistance Fund = www.transplantfund.org 150 N. Radnor Chester Road, Suite F-120, Randor, PA 19087
• http://www.stadtlander.com/content/transplant/lifetimes/tx_funding.html (=Because Money Doesn't Grow on Trees)

There are so many of us within Patti's circle. She has touched our lives in so many ways. I, myself when presented with a life or death problem, I always get my strength from my number one strength Patti.

This is my chance to return the favor. Okay here is the game, I am the Chief-Executive-Officer.
You can sign up to help with any and all of the activities you want to help with.

You are responsible to fulfill the entire activity, let me know what is involved and who the participants are (recognition for all).

I left a lot of the medical "stuff" out. If you have questions or other ideas to raise money or even are able to solicit sponsors to help with the money let me know.

My primary job is to help you organize and implement the fundraisers you want to do in her honor.

You may post comments here or email send email to:

princepack@frontiernet.net

sai3@cornell.edu