$*(% False Alarm!

There aren't too many times that I feel like cussing, but this is one of them! After we were all set to come home tomorrow, Patti's blood work came back very abnormal! Her white cells are down, her platelets are low, and the hemoglobin is dropping. :(

Blood work again tomorrow morning at 7:30 am, then again Friday morning at 7:30 am. If everything is OK then, THEN they may let her come home. Sigh and pray....

Homeward Bound

Today - February 28, 2007:
First, had blood work done at 7:30 am.
Then on to chest x-ray.
Ate breakfast and headed to Dr. Budev's office for Pulmonary Fuction Test.
Then, finally, to apt. with Dr. Marie Budev.

The fluid is completely gone in the lung! It looks wonderful! Patti and I both looked at the chest X-ray and all Dr. Budev could say was that it looked wonderful! She sat down with us and started going over the results for the pulmonary fuctino test, and the X-ray, but didn't have the results from the blood work yet. Dr. Budev's words? "You are doing incredible!" and "Do you want to go home?" Actually, I think she asked Patti if she wanted to go home before Patti had even seen the chest X-ray.

Dr. Budev has taken 4 medications off Patti's "to take" list. The most exciting of them are the two medications she had to take that are inhaled via the nebulizer. No more nebulizer, what will she do? NO MORE NEBULIZER! Patti said she doesn't know how NOT to use the nebulizer!

All we are waiting for at this moment is a new prescription list and to go get the medications from the pharmacy.

Our plan is to pack everything today, and leave first thing in the morning. We are going to find an I-Hop for breakfast and be "home" see that HOME by tomorrow afternoon.

No Talking, No Talking, No Talking....

But the good news is it will probably get better on it's own.

A lot of you know that Patti is still not talking (sounds like she has laryngitis) well since the transplants. Today, Patti had an appointment with the Ear, Nose, and Throat specialist at the Cleveland Clinic. Dr. Kominsky, using a little light with something on the end of it so he could see what was going on, put this scope up her nose and down her throat to watch her vocal chords work. What he found is that her left vocal chord is paralyzed. The probable cause is that the nerve that controls that vocal chord was probably stretched during the operation. There is a slight possibility that it was damaged, but most likely it is only temporary. If it is "permanent" there are procedures that the doctor can do and they are office procedures, but Patti is just not ready right now for another procedure. She is going to wait it out and see if her voice returns on its own. Her lung doctor, Dr. Budev said she has never seen anyone with permanent vocal chord damage from the transplant surgery. That makes us feel a bit better.

Today was her last day of the IV steroids. Thank you God! They caused her blood sugar levels to SOAR into the 400s. The insulin she has been taking has helped, but she is SO ready for her blood sugar to be lower normally.

OK. Now, the best part. She has appointments tomorrow morning (starting at 7:30 am) for blood work, chest X-ray, etc. and after all of that she will see Dr. Budev who may, note I said may, tell her she can go home to New York for a couple weeks. She will have to come back for another bronchoscopy, but like I said, not for a couple weeks! She is trying not to get her hopes up, but it is so hard. She misses her Nate and Brady.

Tonight we went out to Rockne's for dinner, then stopped at the grocery store for the fixin's for chili for tomorrow night. We are planning on IHop for breakfast on Thursday. I took pictures tonight, but have no way of posting them yet. I'll post them as soon as we get back home.

Please keep the prayers coming for the "bad" effects of the steroids to go away -- shakiness, upset stomach, and bad dreams, the return of the function in her vocal chord, and that test results tomorrow are favorable and Patti can return home for a couple weeks.

Thank you all so much. We can feel your prayers.

An AFTER Picture.

Patti and Nate on February 11, 2007, the day before Patti left the hospital.
Doesn't she look great? Look! No Oxygen!



Today Patti started the medication to counter the acute rejection. The nurse had a little bit of a hard time accessing Patti's port at first, but the second time was a charm and all went well.

The weather out here was cold and wet today, so the farthest adventure either of us took was downstairs to the gift shop to buy a book.

Also, check this out! The Clevland Clinic wrote it up and posted it!
http://cms.clevelandclinic.org/body.cfm?id=227&action=detail&ref=589

Chillin' in Cleveland

I (Aunt Katy) am now in Cleveland with Patti. She looks wonderful! The "bad" news is that she does have some acute rejection going on -- results from the Bronchoscopy -- but the good news is, there is treatment for it and today's home care nurse is going to start that treatment. Actually, the doctors apparently have said they would be more worried if there were absolutely no signs of rejection. Of course this upsets Patti a little because she has no signs of rejection, no fever or anything. So, I'm glad the doctors are doing the blood work and that they did the Bronchoscopy so they found the rejection before it was bad enough for Patti to show any signs of it.

Anyway... Patti and I are here alone for now. Joan took Brady and Sarah home yesterday and she has some stuff to do back home, so she will come back out here later in the week. Last night Patti and I had Olive Garden for dinner, yum. Her appetite is good and I have to tell you, it is definitely different being around her and not hearing any coughing.

The weather outside is pretty cold. There was some precipitation last night and it is probably icy outside now, but we don't have to worry about anything today. We have everything we need right here in the room. Food, drink, tv, and sudoku.

Well, I guess that is all for today. Thanks for the prayers and keep praying for the treatment to take hold fast on the acute rejection.

First appointments and Bronchoscopy Done!

This was received from Joan on 2/21/07:

"Even what I tell you may seem bad IT IS NOT! IT IS NORMAL! Patti is showing some POSSIBLE signs of acute rejection everyone does especially in the first few months after a transplant and remember Patti had more than one. She still has the swelling in her legs (one leg is worse thatn the other). She has a hard spot in a vein on her right arm. She has a little fluid in the bottom part of her left lung. Ultrasounds were done of her leg, arm and lung. Not enough fluid to do a tap , and we have not heard from Budev on the results from the arm and leg. They have put her back on Lasix for the fluid.

Liver team says everything on their end is excellent! She got the 47 staples out today. The sutures from the drainage tubes will come out tomorrow when she has the Bronchoscopy done.

All in all the appointments went good. Patti is a trooper and a true ray of sunshine in all our lives.

We are hoping to be back in NY the beginning of March which is not far away. Yee Ha!

Love Joan"

Patti had the bronchoscopy today (2/22/07) and was back at her hotel room by 11:30 am. So I'm assuming things went well with it. We won't know the results for a few days though.

I STILL feel blessed that we have such awesome PUSHers out there praying for Patti. I pray that all of you are doing well and God is giving you the things you need also. Thank you.

Patti's Story in Her Own Words.....

First of all Bekah arrived in Cleveland to be the "alternate" care partner on 2/15 at about 4:30 pm, so Joan may be able to get some time to herself for a few. Way to go Bekah and thanks!

Sarah (Patti's cousin) will be leaving tonight to go out and spend next week helping out too. She is the one who helped Patti all summer while she was home. I think Sarah is going to be pleasantly surprised when she sees Patti and how well she is doing.

And last, I've asked Patti to give us her story and she has given me permission to post her MySpace account here so anyone who wants to read it in Patti's words may go to http://myspace.com/pattiricia0603. There she has pictures, slide show, lots of information for you to follow and get to know the Patti that we know.

Happy Valentine's Day.

Patti's note this morning said she went shopping yesterday (2/13/07) at Target and had pizza for lunch. She said it was weird walking around and not getting out of breath. I think it is GREAT!!! She did say her feet swelled a little and were hurting, but hey, she can breathe!

Happy Valentine's Day everyone.

Released -- "This feels so amazing..."

Patti was released from the hospital 2/12/07. She and her mom are in a hotel just a couple blocks from the hospital.

Here is Patti's quote for today:
"Things are going great. All meds are done for the morning, breakfast is done, and soon a shower will be had and guess what!! I'm not getting out of breath or coughing!! This feels so amazing and I am so greatful for all the prayers, all the help I have received, the surgeons (and all the medical team), and especially the donor and their family. I pray to God that they know what a lovely gift they gave me, Nate, and Brady so that we can continue to be a family. Brady needs his Mommy and I need him!!!"

I believe that says it all.

Address to send cards will follow.

A Short Letter from Patti. 2/10/07

Several people got the following email from Patti this morning.

"Hey there everyone, it's been a while and I know you all know why. I am feeling so GREAT except for the pain and the tightness in the stomach/chest from the tons of staples that are in. The doctors are amazed at my progress and they even said that I could go home today but I have to have a months supply of meds and my nebulizer and microspirometer before I can leave and that won't be resolved until about Monday or Tuesday. That should about tell you all how I'm doing.

I have so much to tell everyone about how this all feels and what an experience and blessing this has all been to me but I don't think I have the strength to write all of that right now. I'll just say though that there are major changes in my life......tons of meds (19 pills at 9AM this morning), no more oxygen (oxygen on room air is 98%), no more chest percussion, and no more bi-pap machine. Breathing feels so wonderful and weird at the same time!!!!"

So, she is on her computer and her email. But, be forwarned.... she doesn't want jokes in her email at this time. She has been dealing so much with just questions, the if anyone has her on their joke list or "forward everything" list, to please take her off that list for now.

Here is some more of the news.....

Yes, she could go home (to the hotel) today if all of the meds, etc. were set up, but they aren't so she can't. But she could! How GREAT is that?! What a blessing!?

She will probably not have to stay in Cleveland for the full 6 weeks that we anticipated. It may be as short as 3 weeks. SEE THAT? 3, THREE! Holy cow!!

She will have some limitations for a while. In addition to ALL of the medication she will have to take for a long time (some of it for the rest of her life), for the next 6 weeks she will be able to lift NOTHING over 5 pounds (a gallon of milk weighs 8 pounds), and nothing over 10 pounds for the first full year. And she will not ever be able to eat grapefruit or drink grapefruit juice again because it absorbs some of the medication she has to take and will make it ineffective completely. Oh, and don't forget no fresh cut flowers.

Now, on to the best news -- well the other good news -- yesterday when she was woken up for her medication was the first time that she can remember in her entire life that she was NOT coughing. I've never known Patti without a cough. I can't wait to see her.

Again, from me and from Patti's Aunt Sally (and I'm sure the rest of the immediate family) to all of you out there who either don't know Patti very well, or who have never even met her. Thank you again. Thank you for your time in checking this web site for updates. Thank you for your time in prayer. Thank you for your concern. Thank you for your donations -- whether monitary or time. Thank you.

Getting Better Every Day 2/7/07

The last drainage tube was removed on February 7, 2007. Patti just keeps improving every day and we need to be solid on "our" plans for when she is released from the hospital (probably this Sunday 2/11/-7) to help Joan (her mom) take care of her in Cleveland for the next 6 to 8 weeks. Following is a schedule of what is set at this time:

Joan will be with Patti as her Care Partner for the entire first 6 weeks.

Week	Dates	Additional Care Partner
1	Feb 11-17	Bekah
2	Feb 18-24	Bekah
3	Feb 25-March 3	Katy
4	March 4-10	Pat and Rachel
5	March 11-17	Barb
6	March 18-24	____________________
7	March 25-31	Only if needed
8	April 1-7	Only if needed

As you can see there is still 1 free week that no additional care partner has signed up. If you have the time and are willing to go help out, please email me (princepack@frontiernet.net) or Sally (sai3@cornell.edu) immediately! The last two weeks -- 7 and 8, we will worry about a little later. I think she will be coming home by then.

If you do decide that you would like to go out and help, or if you would just like some more information on what that really means, please email us and ask.

For now, all is wonderful! Thanks again for the prayers and keep on praying.

Picture of Patti and Sister Kate on Feb. 1, 2007

This picture was taken about 29 hours after surgery was finished and just 15 minutes after the breathing tube was removed.

Drinkin' Jamaican Jammer Smoothies! 2/7/07

This news is actually from February 6, 2007, but it came late in the evening so I'll get it posted now.....

Patti is doing exceptional as usual. She still does have the one drainage tube in, but she is out of ICU. She is in room G111-23. Barb has the phone number. We feel it may be senseless for anyone to send her cards to her room for they may not make it here before she is released. She may be released as early as Sunday. Notice I said may, she is recovering a lot faster than they expected. She walks from her bed to the bathroom with very little assist. She had Spaghetti for supper. She is not woofing food down yet. She needs to go slow to stretch her stomach out. She did have me (Joan, her mom) get her a Jamaican Jammer Smoothie she drank 6 to 8 ozs. of it. Love, Joan...

I am still amazed and praising God for all of the wonderful answers to our prayers! Go Patti!

Leaving ICU and O2 Behind

Patti is leaving ICU today and is off the oxygen completely. She and her new lungs are doing all the breathing on their own! Amen.

She had a swallowing test with a speach therapist and passed with flying colors. No surprise to us. Swallowing means you can eat FOOD, so we knew that test would be a no brainer.

The lung doctors say she is doing better and healing faster than most who have just hand a lung transplant. We aren't surprised by that either, she has such a determination to survive and help Brady grow up!

Thank you God for giving these doctors the ability to perform this operation on Patti, and thank you to the family of the donor. We pray for your family and praise you for your courage.

Sitting Up and Giving "Interviews"

OK. February 4, 2007 Patti was able to sit up in a chair for about 3 hours! It is so amazing, just that! She is still in ICU, but very soon will be moved out. On a scale of 1 to 10, pain level was down to a 2!

Today she will start giving "interviews" to interns who will be seeing her daily to study her case (since she is the first person to get a double lung AND liver transplant in Cleveland Clinic). I hope they all have a good sense of humor, because they are in for a ride with this part of their "education."

Not much more to say except keep it up with the prayers and praises!

Released from ICU?

The last I heard (2/3/07, just before I went to bed) it was possible that Patti was going to be released from ICU today. I'm not sure yet if that happened, but WOW! Isn't that amazing? Four days after receiving new lungs and liver and they are talking about releasing her from ICU already. What a strong person she is....

She is learning how to swallow again. First clear liquids, then applesauce then on to Pizza? She hopes so. :-) That is our Patti.

She still has a couple drainage tubes, but she is already starting to heal. Praise God in all of his glory.

Also, Sally feels a GREAT need to thank EVERYONE who has given time to benefits, money to help with all of this, time to help with Brady when needed AND time for prayers. Thank you all from all of us. Now... Keep praying :-)

God Bless and good evening.

Day 3... February 2, 2007

This in from "Aunt Sally"

Patti is in a lot of pain, they may even do an epidural to help this. From
my understanding of this they stopped the pain meds because an IV was
bothering her.

They also removed one of the drainage tubes, she still has 2 on the right
and 1 on the left side.

An ultra sound was done today and found a little fluid on one lung, but it is
okay and would not be sufficient for surgery.

Muff did sneek Brady in for a full minute today to pump her up before getting
kicked out of ICU.

We all know the first 48 hours is most crucial and we are through that so
YAHOO! Her oxygen level is at 100% which in itself is amazing.

She is ready to eat but her body is not ready to handle food. SOON! I am so
grateful she has a great love for food! Some of the nurses in the next
curtain room were talking about food and it really ticked her off...she's
back....move over girl and watch out!

Joan called with the update on the above. On the other hand Master Brady has
2 new teeth. Both on top the one on the left is fully through the one on the
right is just barely making an appearance.

Now this from me:

Brady has returned to New York with his Grandma and Grandpa Prince so Mommy can get better. Nathanial and Joan (Patti's hubby and mom) are there in Cleveland with her to monitor her recovery for us.

Sally will email me nightly with updates and I will post them here before I go to bed every night so I know that I have all of the days news.

We aren't out of the woods yet. There are still good days and bad days to come. Please keep praising and praying. Our God is such an AWESOME GOD! Amen.

In the Cortland Standard on 2/1/07

Homer native undergoes double lung, liver transplant

By SASHA AUSTRIE
Staff Reporter
saustrie@cortlandstandardnews.net

After more than 10 hours on the operating table Patti Prince, 25, received a double lung and liver transplant. Prince, a Homer native living in Yorkville near Utica, received the transplant Wednesday morning at the Cleveland Clinic in Cleveland, Ohio.

“The most thoughtful, kindest person I know has a chance at life,” said Patti’s best friend, Beth Odell, of Cortland. “I’m totally blessed just knowing her.”

Prince’s husband, Nathaniel, Prince, said his wife is in the intensive care unit at the Cleveland Clinic. He said that she was slightly sedated and she was able to communicate on a dry erase board. “She is doing real good,” he said.

Prince was diagnosed with cystic fibrosis at the age of 6 months. The hereditary disease affects the entire body, but mostly the lungs, which can become severely damaged by thick mucus secretions over time.

Her donor was age 23, gender unknown and, according to Odell, died eight blocks away from the clinic.

“It was a perfect match,” Odell said of the _organs. “All we are thinking is, God bless the family.”

Over her life Prince has undergone five surgeries to stop the bleeding in her lungs, two stomach surgeries to release blockage in her intestines and a liver biopsy, Odell said.

“When she wakes up she is going to take the first real breath in her life,” Odell said. She said the first thing Patti Prince is going to do when she gets strong enough is eat pizza and drink chocolate milk, then take her 1-year-old son, Brady, out for a walk.

Nathaniel Prince said it would be approximately three months before his wife would be able to come home. “We are just hoping to get her healthy enough so that she can do what she is able to do,” he said. He said that his wife’s main focus is to be a mother again and become independent.

Before the transplant on Wednesday, Prince had three sets of organs offered to her.
In one instance, everything was a match, both lungs and liver, but the final tests revealed the organs were infected with hepatitis B. In another instance, the lungs were good, but the liver was damaged; in the third offer, the lungs were too small for Prince.

The new organs are not a cure for Prince. She will be on anti-rejection medication for the rest of her life. Odell said the organs could last Prince from a year to 20 years, it all depends on how her body reacts to the organs. “She has got her baby, her husband, her health and her miracle,” Odell said. “It is such an amazing gift. I kind of feel like Shawn (Falter) was pulling some strings for her.” Odell was referring to Prince’s childhood friend who was a soldier killed in Iraq on Jan. 20 and buried in Glenwood Cemetery Wednesday.

http://www.cortlandstandard.net/story001.html#art5

Ventilator Removed 2/1/07

Patti is no longer on the ventilator. It was not doing anything as of 11:45 am today, so the doctors and nurses told her they were going to take the tube out of her throat. She admitted she was a little scared. After they took it out, everything is good. She still has the oxygen like she had before (up her nose), but the setting is only at 3 liters per minute (I believe) and it is only for her comfort, not because she needs it.

I can't even explain to all of you my feelings of gratitude for your prayers. Thank you and keep praying.....