Rough Ride Today

Alyssa has had a rough time today, spending most of her time riding the "Porcelain Bus." Unfortunately, this seems to be a common side-effect for almost all of her meds. As a result, the doctors want her to back off on a couple of them; and, to avoid dehydration, she will have to increase her intake of fluids. We all know what that does to her, so it doesn't look like she will be getting of the bus any time soon.

Jan and Michelle, from the Kidney Foundation, stopped by this afternoon for a visit and presented Lyss with a special "transplant necklace." She was very happy to see both of them.

Sadly, due to today's issues, tonight's visiting hours have been cancelled. We hope to reopen for business tomorrow.

The Deff boys are off to Buffalo tonight for Dave Matthews. Alyssa will be there in spirit. We're hoping that she can make the Madison Square Garden concert later this month.
dd

A Day of Rest

Nothing like a day at home! No tests or procedures today, so Alyssa gets to spend a day resting and catching up on missed TV shows recorded on her DVR. Yesterday's labs were very good - with Crit leading the way, staying strong at 30. She does have some phosphorous issues, but they are regulating that through pills. There was some concern that the surgeon took out the pic line. This was put in to provide easy & quick access for Alyssa's Soliris infusions. Due to all she has been through, she has incredibly small veins, which requires the IV Team be called in to place the line each time. So to ease the process, she will have a tunnel catheter placed in her chest tomorrow afternoon. This will be the third catheter she has received in a little over a week. This one should be good for several months.

Blood pressure today has been running high again - 156/114. It may take a little while to get the proper meds and doses to bring this under control.

Lyss had several visitors last night and mom & dad joined in by cracking open a new bottle of wine to celebrate - I can't remember a drink ever tasting better!

Baseball fans - 109 days to Pitchers & Catchers report to Spring Training!
dd

A Message from Alyssa

Hello everyone; I figured it was time for me to write something on the blog so here it goes. It's Alyssa by the way! :) This morning was a rough morning to say the least, had to wake up at 7am to go to the clinic for a blood draw and to meet with doctors, which was hard because I was so tired from being up all night, PEEING! :) No complaints here. It may sound weird to say, but I LOVE TO PEE! haha. Anyway the doctors said everything looks good as of now, which was wonderful news, even though all I wanted to do was go home and sleep! So I finally got home around 12:30 and spent almost an hour trying to figure out these meds. It's unreal. There are at least 30 individual pills that I take at 9:00am and again at 9:00pm and a whole bunch more in between. I don't know how people do this without help considering it took me, my mom and my dad to figure it all out! But I got them down, without pleasure. They are not pleasant pills. Anyway I'm getting tired so I just wanted to come on here and say Hi and thank you to everyone for all the prayers and thoughts sent my way. I really do believe there is a higher power and he helped me through this because everyone was asking him to. I am so grateful to have had this opportunity and I have so much trouble putting it into words how to thank Jen but she is an AMAZING person, who was willing to go through hell just to make me feel better. She is so wonderful and I wish I could show her my thanks, but there just aren't words. SO Jen (& Mike, Luis & little Leana, I know this has been hard on you too) I LOVE YOU, and you truly are my hero and a gift from god. I hope you feel better soon, and we will forever have a bond and tie that most people will never know. We actually call the kidney LBJ (Little Bit of Jen). And let me tell you all, this is one good working kidney, it pee's all day and night and my levels are almost TOO good. Love you Jen, you're the best!! Anyway, it's time for me to lay down, this is exhausting. Friends on the TV, and sleep sleep sleep!! Hope to see you all soon! :)
-Alyssa

Day 6, Sunday at 1:30pm

She's Home

It's great what a couple plasma transfusions and 24 more hours of recovery have done for Alyssa. Even last night, we would have bet against her leaving the hospital today, but here she sits, playing with her two dogs, Quincy & Lili. The crit came back up to 30 and the swelling in her leg has dramatically decreased. The doctors felt that the emotional uplift that she'll get from being at home will help speed along the healing process. She needs to return tomorrow to the clinic as an out-patient for tests and monitoring, but that should only be for about four hours, then back home.

It's amazing to see how far she has come in just five days. She is feeling so much better and the kidney is going strong. Much to her relief, peeing is like riding a bike, even though she hadn't done it for year, she just slid onto the seat and away she went!

Jennifer is still pretty sore, but doing well at home. Last night they held a birthday party for her daughter Leana, who's best gift was having mom home again.

Again, thanks for all your support. We can't tell you how much it's meant to all of us. We are going to try and get back to a "normal" life over the next few days. I'm taking Ryan back to Oswego this afternoon and Deb & Mark will be back to work and Kyle back to Athena tomorrow and Lyss...she'll be enjoying everyday, so grateful for the incredible gift that Jennifer has given her and bound and determined to return to as a normal of life as she can.

Labs: (for you Heidi)
Red Blood Cell...........3.2
HB................................9.8
HCT.............................30
Platelets.....................199
GFR.............................59
Creat....................... .90
Potassium.............. 3.6
BUN...........................10
Phos........................... 1.4

dd

Day 5 - Saturday at 12:30pm

A Few Setbacks

As is to be expected, Alyssa has had a few new challenges to face over the last 15 hours, which will require that she continue to stay in the hospital for at least one more day. Last night, they noticed swelling in her right thigh area, which was accompanied by pain when Lyss walked. With blood clots at the top of the "Watch List," she was taken down to ultrasound to determine if there was indeed an issue here. Thankfully there wasn't, but some additional lab work did raise some other red flags. Her crit had fallen to 20 from a normal of 31, which will require a two unit blood transfusion today and her potassium had also fallen to an unacceptable level also requiring a transfusion. She is very uncomfortable, with pain and nausea issues, so to put it mildly, it hasn't been a very good day so far. She is fine with staying another day as she knows that they can best care for these issues right here in the hospital.

There is good news to share, the catheter is out and her kidney continues to pump out those fluids!
dd

Day 4 - Friday at 8:00 pm,,``

Laps Around Nurses Station

Nicole & Marie Playing Hairdresser

Very Good Day!

All has gone well today. The new kidney has continued to put out copious amounts of fluid, the lab reports were good, and she is no longer receiving IV fluids. Laps around the nurse's station are becoming easier as she regains her strength and it's T-Minus 3.5 hours until the dreaded catheter is removed. As of midnight she will no longer be attached to any machines! Incredible how far she has come in only four days.

We're still hoping for a Saturday morning discharge, which at this point is dependent on good morning labs and her ability to prove to the physical therapists that she is mobile enough. While it will be really nice to have her home, we are smart enough to realize that if she's not ready that she should stay a little longer. On the other side, everyone knows the worst place to be when you're sick is in a hospital due all the nasty "bugs" that run around here.

Debbie was under the weather today and had to stay home, so it's been a difficult day for her not being able to be with Lyss. She is feeling better tonight and plans to be part of the evacuation team if Lyss leaves tomorrow.

Following are some of today's key labs:

BUN.............. 12
GFR.............. 59
Pottasium.... 3.5
Creatinine.... .89
Glucose........ 110

Talk to you tomorrow
dd

Day 4 - Friday at 11:30 am

Good morning - all still going well. Last night was relatively quiet with Lyss getting some much needed rest. Urine output has remained at a high level, allowing the doctors to begin weening her off all the extra fluids that they are pumping into her. It also means that she can rid herself of the catheter at midnight tonight. Talk about your "midnight madness," the catheter has been Alyssa's biggest issue following the surgery, so this is really good news! She has begun the countdown!

Still don't have the lab results from today, but will post as soon as available. We're off now for a walk around the halls. If we can build up her strength, a Saturday discharge may be in her future.

dd