P.U.S.H. 4 Patti Benefit Ride success -- even with slightly rainy weather.

The ride took place on August 26, 2006. Thirty six people registered with 25 motorcycles between 10:00 am and noon then rode out to McDonald's parking lot in Dryden, NY while Dryden Police Department blocked traffic. They rode from Dryden through Whitney Point up to Bowman Lake State Park and had a geocaching demonstration (see http://www.geocaching.com/) at the park. From the park they rode through Norwich, with the assistance of the Norwich Police Department, back to Cortland and had an escort from the New York State Police on Route 81N from exit 10 to exit 12 and off onto Route 11S. The ride concluded at Bob Argyle's Easy Street Bar and Grill on Homer Ave in Cortland NY. Thanks to the businesses mentioned above and the law enforcement officials who gave such great assistance. The ride came off without a hitch.

At the conclusion of the ride, there was as much barbecued pulled pork for sandwiches as the riders could eat thanks to Tom Slaughter of Brooktondale who steamed a pig right behind Easy Street for the riders. Door prizes were provided by Gold Sport Cycle, K&H Kawasaki, Ithaca Recreation Sports, Marsha and Fred Choffeè, Mix Brothers, and Express Mart of Dryden. A big thank you is extended to all of our door prize donators.

In addition to thanking the sponsors of this ride, Katy Prince (Patti's aunt) would like to thank all of the riders who turned out for this event: Local riders, riders came to ride from Cobleskill, Utica, Georgetown, Genoa, and Endwell, NY too. You all need to give yourself a pat on the back. The weather looked dismal and you came anyway and I'm glad you did. I had a great time, and we raised $545.00 for Patti.

PUSH 4 Patti Ride

TODAY!!!

Starts at McDonald's in Dryden, NY.
Register 10:00 am - noon.
Ride leaves at noon and will go through several counties!
Stops include: Bowman Lake State Park, Oxford, NY where there will be a geocaching demo;
Norwich for gas;
Easy Street Bar and Grill on Homer Ave in Cortland for pork and salad, door prizes, and 50/50 raffle.

See you there.

Patti is officially on the "List"

We got this email from Patti today:

"Hello Everyone!
This is just a quick e-mail to let everyone know that today I am officially on the transplant waiting list. They gave me an allocation score of 35 for where I am placed on the list. The very top people on the list have an allocation score of 20-<30, the next group up (which is where I am) is 30-35, so I am pretty close to the top of the list. Also, since I am a multiple organ transplant, this should place me higher. So there we have it, the transplants can now happen any day!
Patti "

What wonderful news! Keep praying! Here is my prayer:

Dear God,
Thank you and praise you that Patti is now officially on the transplant waiting list. I pray that she is very high on that list and that the tranplant happens very soon. (In my mind, this Saturday sounds like a good day). I again pray to you O God that the person who is a match for Patti already has made the decision to be an organ donor and has informed their family members of that decision. I also pray that when the time comes the donors family has the courage to carry out the wishes of the donor. Dear God I know this is a huge request, but I also know that you are an awesome God and that if I believe, and Patti believes it can happen. Oh, dear God let it be Your will.
Amen

Thanks again for the prayers everyone. If you have a prayer that you would like everyone to pray with you, please post a comment here and we can all pray together. -- (Aunt Kate).

Trip Home From Cleveland

This is Joan's account of the trip home from Cleveland:

Cleveland Clinic gave us a tank of oxygen that when set at 3 litres would have taken Patti 6 hours. Good enough for the trip home. NOT!!!!!!!

We made a gas and potty stop in Ohio and Patti said, "I am getting plenty of oxygen let's turn it down to 1.5 litres so we are sure to have enough." So we did!

Just inside the PA border my Mom's SUV pulled me into the passing lane. I had all I could do to keep it going to a shadey rest area (No gas staion) just a rest area and weigh station. Patti called her husband Nate and thank god his parents were there at that time. We can use their AAA to get a tow and then get a rental car and come home. NOT!!! AAA says no way cause neither Dale nor Gina are with us and it isn't their vehicle. I can't get ahold of my mom she is in Canada and she is not answering her cell phone.

Patti has a great idea call 911. It works they are sending a squad with oxygen. Patti hangs up phone and her oxygen runs out. It was supposed to last 6 hours on 3 liters. Look back in this letter. To see what we did to make sure it would last. We left Cleveland at 3 or so and it is now 5:30.

These Voluteers of East Springfield PA are wonderful they get us a tow truck that will wait for payment and get us to Brown Memorial Hospital in Conneaut, OH where there is plenty of oxygen for Patti til we can get a rental car and then they are trading the empty tank for a brand new one so we are sure to have enough to get home. So did this work? NOT!!!! No car rental places in little town.

Nurse says call Enterprise they bring you a car no matter where you are. None close open. Dr. Namey (wonderful man) won't let me use money to make long distant calls at pay phone he makes them from hospital phone. Dr. Namey gets ahold of Enterprise at Erie Airport and hands me the phone. Yeah we are getting somewhere. (Step Dad says charge rental to Patti's credit card and he will reimburse her). Okay get car for 2 days cause they won't rent it one way and I have to get back to PA to get SUV when fixed. Good gonna get a car. WHAT? But Enterprise is suppose to bring the car to us that is what they advertise. They won't bring it to us cause we are in Ohio and they are in PA. We are in a different state. They were only 30 miles away for cryin' out loud and I had to go by there anyway so I could give them a ride back.

To make a long story a little bit longer how are we getting home? Yeah Daughter Barb and her husband Corey are on their way to get us. It is now 10:45 P.M. they get to Brown Memorial to get us at 2:15 A.M. Patti safe at home at about 9 A.M. and I got home around 11. Tired has heck but so much to do.

Not sure when we will be headed back to Cleveland. If Lungs and Liver don't come in in 4 weeks Patti has a follow up appointment then and we will be staying there until she gets the transplants. According to Docs she will most likely be back in having transplants before her follow up appointment.

So why was this Dr. Namey so addiment on making sure Patti got exactly what she needed. Even food when cafeteria was closed? He met a young girl with CF a couple of years ago and that youg girl passed away. When he heard Patti has CF that did it for him. Love that man forever! So did I mention that I got stuck in an elevator at the Holiday Inn for 20 minutes? That my friends is another story!

Joan

Week of 8/5-8/12 Catchup.

At this moment Patti is back home with Muff and Brady. In Cleveland they did the procedure and stopped the bleeding in Patti's lungs and after that she was well enough to be released for now. Patti decided that she wanted to go back home with Muff and Brady for as long as she can. She has a follow up appointment in Cleveland in 4 weeks, but the doctors seem to think that they will have a donor before then and the transplants will have happened by then. -- Just Keep Praying!!!

At this moment Joan has not moved to Cleveland. She and Patti talked about this and Patti and Muff talked about it too. Joan would like to have an appartment before she actually leaves her appartment here in New York and it would be nice if she had a job to go to also. She has applied online to a couple places, but nothing yet.

We have made a few contacts for Joan in Cleveland to try to help her find a place to live and maybe someone who knows of a job for her too.

I will be posting another update soon (either tonight or tomorrow), but I am not at home at the moment and I don't have all of the information with me. I just wanted to get something posted to give updates to those of you who may be checking here, but not getting the emails. Sally did send emails while I was away in Canada, but wasn't able to get to the postings. :-( Sorry about that.

Sarah has decided that Patti and Brady are more important than soccer so she will be staying with Muff and Patti and Brady until September 1, 2006. We are still in need of someone to help with the baby sitting of Brady while Muff is at work after that day. Sarah returns to Patti's house tomorrow, August 14, 2006 in the evening.

Patti's Aunt Sue in Florida ordered some buttons from me that I sent to her before I left for Canada, 50 to be exact. I got news today that the day she received the buttons they were all sold and she would like more. Sarah made another 165 buttons while we were in Canada and I will send Sue another 100 buttons tomorrow. Buttons will also be available at the Cortland Country Music Park on Saturday, August 19, 2006 at the jamboree.

Like I said, more will be posted soon. Keep praying for something more to happen, and remember that the donors family (whoever that may be) needs our prayers too. We don't WANT someone to die so that Patti can live, but lets pray that since "someone" is going to die, that the person who is a match is a donor, has already made their wishes known to their family, and that the family is courageous and loving enough to carry through with their loved ones wishes. I am also praying for healing for the family after the donor has passed.

Again, thank you all for all of your prayers.

A Unanimous YES!

The 50 doctors, case workers, transplant coordinators, etc who met today decided unanimously YES they will do a double lung and liver transplant on Patti!

Next step is to get this through Ohio State Board, but the hospitals "requirements" are higher than the state's so all things considered this is a GO!

We have all cried! You may cry too with tears of joy. Keep praying for the approval to come quickly from the state and for a donor.

Patti is waiting now to be moved from building M to building G which is the building she needs to be in. She is only in building M because they didn't have a bed for her in building G. But they are working on it.

Sally is back at her own home now. And I saw Nate today when I met him in Syracuse to pick up Sarah and he was on his way to Cleveland to see Patti. I believe he should be there sometime between 11:30 and midnight tonight. I don't know if he knows this yet. I'm kind of hoping Patti gets to be the one to tell him. I haven't heard from Joan yet.

Thank you all again for everything you are doing. Keep praying!

Sally will update...

While I am in Canada, Sally will try to keep this web site updated. She will be sending the emails stating that the site has been updated also.

All Tests Are In!

You all are wonderful PUSHers!!! Keep praying and read the news of today!!!

1. Tomorrow (8/4/06) at noon there will be 30 transplant coordinators and doctors all in one room discussing the pros and cons of doing both double lung and liver transplant at the same time on Patti! Today, Dr. Mehta said, with confidence and knowing that the do have to do the meeting, "we're going to do it." Now remember they still have to have the meeting and there is still a possibility that they are going to say no, but Dr. Mehta said he has the top 3 liver transplant surgeons and the top 3 lung transplant surgeons in the world and "we're going to do it." Sounds good to me. That is the most exciting news at the moment but keep praying and read about today...

2. Today...

• There were so many doctors an caseworkers and such going into and out of Patti's room that the nurses only got to take her vital signs about twice! It was a busy busy day and Sally is exhausted so I can't imanging how Patti feels!
• Besides all the tests that had to be done. The chest X-ray, breathing treatments and testing, bloodwork, sputum, etc.
• Biggest concern is infection. The infection doctor is concerned about all of the antibiotics she has had to be on since last February (2005). Since then she has been on antibiotics 3 weeks on, one week off. And she is on really strong antibiotics too -- there is only one stronger. Infection is a HUGE concern now so pray for infections to subside. One of the infection doctors said that if we can keep infections down, he isn't too worried about weening her off the antibiotics. He believes she can do it and in the future the antibiotics will still be effective if needed. BUT if infection sets in again and she has to go on the strongest medication known to fight it, there may be problems. Good thing to keep infections down. Pray, pray, pray.
• The new transplant coordinator is Liz Newhouse. She used to be a Pre-transplant coordinator for liver transplant patients and she recently moved to the lung transplant patients. What more could we ask for? Liver and Lung? Sounds good to me.
• Only thing for Patti to do in the morning is have an ultrasound on her liver before the meeting.

3. What is next?

• Joan needs to get to Cleveland. It is my understanding that Barbie has gone back to work on the housing situation. If, for some reason, Patti is released from the hospital before the transplants happen, she HAS to stay in one of the "houses" near the Cleveland Clinic that Barbie had found before to wait until a donor is located as from now on Patti's primary care doctors are the doctors in Cleveland. Joan will be there with her and we will probably start getting the help from the Boomer Esiason Foundatation for the housing. This will eliminate the need for Joan to have other housing for now and she (Joan) should be able to get a job too. Patti should be able to be "home" alone for the day as long as she doesn't try to do anything but watch TV without help.
• Sally has to leave Cleveland tomorrow after the doctors meet and return with the verdict. Yet another reason for Joan to get there.

Also on a good note for Patti. She talked to Ally, the girl that was on the TV game show "Deal or No Deal" who has CF for about 45 minutes today. That was good. Patti needed that. But I won't tell you what I heard about their conversation. I'll wait and let Patti tell you all that when this is all over. :-)

Keep praying everyone. You are doing a good job!

***Immediate Attention***

Joan is moving to Cleveland! She is trying to find a way there this weekend and a place to stay. I have a message (email at this time) in to a contact in Cleveland to help with finding Joan a place to stay temporarily (or permanently).

We need the following:
1. A ride for Joan to Cleveland this weekend.
2. A place for her to stay until she can get a job and an appartment of her own.
3. A way to get Joan's stuff to Cleveland when she gets an appartment.

Please respond via email to me (princepack@frontiernet.net) and cc: to Joan (jpeak5@yahoo.com) with comments and/or post comments here.

News 8/3/06

Patti actually arrived in Cleveland by airplane at about 11:30 pm on 8/2/06. At this time we do not know if insurance is going to pay for that plane ride. If not the cost is $9340.00!

She is in Room AD24 of building M (Children's hospital for surgeries, but they do not think they are going to fuse the bleeders in her lungs because the medication she is on has helped reduce the cough and the bleeding is not as bad as it was).

She has had:
* Chest X-ray
* Bloodwork
* A Pulminary Doctor (Hergs, I think) has been in to see her.
* The Case Worker has seen her.

She is expecting:
* The liver doctor to come see her this afternoon.
* A mammogram today?
* The dental records to be faxed from Utica.

The transplant coordinator, Alan Stewart is out until August 14th so Sally is trying to get in contact with his backup at this time too.

The scheduled date for the doctors to meet reguarding cases such as Patti's is on Tuesdays so we are praying that this Tuesday (which it should be) will be THE Tuesday that the doctors decide that yes, she needs the double lung and liver transplant ASAP. If not both, then at the minimum the double lung transplant NOW. Remember that after that meeting, it will take aproximately 10 days for the Ohio State Board (or whatever) to approve the decision of the doctors.

PLEASE DO NOT CALL SALLY'S CELL PHONE. If you have to leave her a message, call the Holiday Inn Select at 216-241-5100 room number 915. She will check her messages there and she will call me with all updates as soon as she can leave Patti's side to make the call, so check back here frequently.

Patti is in Cleveland 8/3/06

Patti arrived in Cleveland on 8/2/06 around 11:00 pm. Today she is meeting with doctors and getting testing done.

Updates for August 5 - August 12, 2006

I am in need of someone who knows how to use blogger.com to help with updating this site. I will be in Canada from August 5 - 12, 2006 with no computer access and will be unable to maintain the updates and will have no access to email.

If you know how to use blogger.com and would like to handle the updates for one week, please email me immediately so I can assign you rights to this site and get your contact information for people to contact you with update info. Be forwarned...You will probably have to be the one to contact "Aunt Sally" or Joan, or Nathanial to get new info to post.

Any takers? Email Katy at princepack@frontiernet.net

Patti transferred to Cleveland 8/2/06 YES!

I called University Hospital (that is where Patti was, I believe I told you Crouse, but I was incorrect she was in University Hospital in Syracuse) tonight at about 9:45 pm and...

Yes, Patti has been air-lifted to Cleveland. I believe she finally left University Hospital at aroun 8:45 pm.

More information will be posted tomorrow (8/3/06) as soon as I know more.

Patti to Cleveland Today?

OK. I know you are all waiting for updates and I'm sorry I didn't get you one yesterday, but there wasn't much to say.

Patti did not get transferred to Cleveland yesterday because Cleveland did not have a bed for her. Aunt Sally is there waiting for her and Patti should be transferred today!

That is all I know at this moment. Sally is supposed to call me as soon as Patti gets there so I can post that she made it, then when they find out what is happening, she will call me to let me know what is going on.

Sally does not have email at this time -- so all updates will come via telephone and I'll post them as soon as I have information.

Thanks for the prayers everyone keep PUSHing (Something IS happening, keep praying).
--Katy