Signed My Life Away Today!

I was discharged from Duke today!! I was also listed today for my organs!! Exciting & somewhat scary at the same time. My LAS (Lung Allocation Score) is low, but I was told that I may not wait that long because I am the only one of my blood type on the list.

I have an appointment in the afternoon & then I will head over the the Center for Living to begin Pulmonary Rehab again.

If you would please, pray for the donor's family, the doctors and for my family & I.

Meet Lincoln & Leopold

Meet Lincoln and Leopold. Can you tell what they are? They were a gift to me from my sister's best friend. She is quite talented, as you can tell, she can make almot anything!! I love them, they are so cool! Thanks so much Shananan!!


Lincoln & Leopold and the nebs


Happy Lungs


Lincoln & Leopold and the Vest

Friends

Friends

Just call me a "Frequent Flyer"

So...I've landed myself back in Duke hospital due to some more blood episodes. But on a good note, again not nearly as much as before, only 2 TBP..phew. The docs wanted me to come in just for observation. So I came in thru the ER. Well its day two and I'm still here somewhat discouraged because there has been talk about keeping me here until my TX! I don't want that, I love the center for living!! The delimma is: aspargillis in my lungs, clots in my arms and my liver not being up to par to handle the meds.

I'll explain: One, my cultures have shown that I have aspargillis in my lungs. The medication to treat aspargillis is VERY hard on the liver and I have been on it before but was taken off it because my liver enzymes shot thru the roof. There is another med that can treat aspargillis but it is IV only, which leads me to the next road block--IV access. I don't have a central line in because of the cots in my arms. Both PICC lines had to be pulled due to clots. A port is not an option because of the TX surgery, docs don't want anything in the chest area. So the plan is to look to see if the clots are gone (the docs think not, its only been 2 weeks--but God can do anything!), if clots are not gone docs want to do a MRV which is an MRI that looks at blood vessels. The problem with that is I have a shunt inside me with surgical metal clips and when it was put in the docs told me I cannot have an MRI. So, yet another road block!

Please keep me in your prayers. I will keep you posted.

Friday Rehab

Yay, I made it through my first week of rehab!! Now I get a nice weekend t rest...I hope. Today was not to bad, I was a little tired because before P.R. Dad & I walked around clinic all morning. But I made it through. Got my chest PT, floor exercises, weights (which they increased--both weight & repititions!), bike (with increased intensity!) and then walking. I am tired, but good tired. I met a girl today who was post-op her double lung TX. She got hers on Spetember 9th, she was listed and only waited a week!! She looks good though, I thought. We swaped info.

Oh yeah, Dad & I got chic-fil-a for lunch (YUM!) since we were at clinic :) Dad & I are both hoping to sleep in tomorrow, we are both exhausted!!

New Record In Rehab!!

Today had a rough start, as I woke up at 4:15 am coughing up bright red blood. I sat on the edge of my bed and prayed please God let it stop and not be as much as before (at least 1 cups worth). Well God answered my prayer...it was only about 2 TBSP. :) I called the docs to let them know anyway. I was just told to hold the lovenox for today and still attend Pulm Rehab. Once I got going at the gym it wasn't so bad, my chest opended up and I wasn't so tight! I even broke my record! Today I was able to walk a mile and a quarter!!! I also did the stairs, weights, bike and floor exercises. After that Dad and I attended a lecture on scar mobilization. It dosen't sound that comfortable but it will help me not be so stiff after TX.

The diabetes appointment went well this morning. My sugars are still high due to the prednisone, no surprise there but I have an appointment with the pump trainer Monday at 3pm, she may make some changes to my insulin pump.

Tomorrow I have an appointment at 9am with pulmonary to have PFTs, ABGs and some other labs (antibody levels and C-peptide) drawn. The C-peptide is to see if my pancreas makes any insulin at all. Basically to see if my pancreas is functioning.

Wednesday the 29th I have another appointment with pulmonary, I will actually see the Doc and hopefully sign the papers to be listed!!! :)

Please pray I stay healthy and strong and keep getting stronger and no more blood episodes! Thanks for all the prayers, God hears and answers I know it!

3rd Day--Good day!

Today was a good day! Much better than yesterday at Pulmonary rehab. I was not as tired, I actually felt energized afterwards. I had the usual workout and then Dad and I had to attend a lecture on Breathing Retraining. It was short, more a demonstration than anything. But because CF has trained my brain to breath a certain way, once I have my new lungs I will have to retrain my breathing. I did get to see two girls post-tx and they looked awesome!! I hope I can recover as well as they can!!

I have an appointment tomorrow morning with the diabetes doctor and the off the P.R.

Again thanks to all who have been praying for my family and I. We are all doing well! My sister Kelly had her baby Sept 18 at 8:41am, 7lbs 3oz. He is precious, his name is Caradoc Irvin Persinger.

What a proud Big Sister.

2nd Day of Rehab

...oh goodness...they had me walking up and down steps (my Nemesis)...the end.

1st Full Day at Pulmonay Rehab

I had my first full day of Pulmonary Rehab today. I went from 12:30 to 3pm. Tomorrow will be a little longer because I have a lecture to attend. First I got chest PT, then floor and leg exercises for 45 minutes, next get break then I hit the stations. First station was walking, I had to walk 20 minutes. It doesn't sound like alot, but man when you haven't walked for a few months it's tough. But I did 10 laps in 20 minutes. Next I went to weights and weight machines. This was not to bad until they made me do squats..that about killed me!! LOL!! And finally they put me on the Nustep machine for 15 minutes. After that I was done. Overall it wasn't bad, I will just have to work up to my strength since I've been down so long.

Home Away From Home

"Stunk" as My 3 year old neice calls him


Bedroom



Living/Sitting Area (with Fireplace!!)

Bedroom

The Kitchen

Freed From Hospital

Well I am out of Duke Hospital and Dad and I are settlng into our extended stay apartment. It is nice . It's a little 2 bed, 2 bath with a full kitchen and sitting area. It even has a fireplace!! :)

Yesterday we spent most of the day at the Center For Living, Grocry store and Drug store. Monday starts my first real day of Pulmonary Rehab! Somewhat excited and nervous at the sametime.I heard they work you hard. I will get there at 12:30 and start by getting Chest PT, then move to floor/leg exercises, then weights, then cardio workouts. I will finsh around I think 3. There will also be lectures that attend,along with my caregiver--Daddy or Ben. Once I make some milestones in pulmonary rehab I can be listed for organs!!! :) The doctor said she thought I could be listed within 10 days of begining Pulmonary Rehab. So we are moving right along!! :)

As far as the Bronchial Coiling/Embolization, it went well. They coiled 3 arteries. However I've been hurting pretty bad since Tuesday because one of the arteries they coiled is in the pleural space and that is a very sensitive area, so I've been living off motrin for the past few days. Hopefully this has done the trick and no more bleeds. Hopefully the clots are dissolving also. They pulled my PICC and both arms are getting better. My right arm is normal size now, my left arm is doing better, not all the way normal, but almost. I can wear my wedding band now :).

I'm feeling pretty good, despite all thats happended the past few days. Thank you all for the prayers and encouragement.

My Papa

My Papa died Thursday morning. I'm really sad because I didn't get to see him before he died He will be missed! But it is like my husband and dad told me, he's not weak or hurting anymore. He is strong! I'd like to think he is probably fishing. He is and was loved VERY much.

Please pray for my family during this time as we are all spread apart right now. My mom is back home in VA with my G'ma, brother and oldest sister, Dad is here with me in Durham and Ben is coming for the weekend, my other sister is in Roanoke having a baby as I type! Justpray for strength during this time as we are not together. I know God knows what He is doing, but it is ALL VERY overwhelming now!!

Plan for the Week

I like Duke, it's diferent but I like it. So the plan for now is to get me stabilized, meaning stopping bleeds from my lungs and hopefully"busting" these DVTs in my arms here soon. We are somewhat between a rock and a hard place because I have the potential to bleed from my lungs but at he same time I need to be on blood thinners to bust these clots!! So, Docs want to do "Bronchial Coiling" which will hopfully stop or slow the bleeds down. This will be done Monday or Tuesday then discharge will be on the radar for me. Once discarged I can begin the pulmonary Rehab at the Center For Living and get LISTED!! :)

My PICC s giving us some trouble, my arm is swollen up again and it has a "bubble" like look to it. They are not sure if it's infected, but they are keeping an eye on it Docs don't want to pull it because they are not sure what other options they have to get a central line in me. Talk of a port is on the radar, which I am all game for!

I've been walking alot. Yesterday I walked my irst FULL mile. Today I'm halfway and will walk again after I finish here.

I appreciate all the prayers comnig in. My dad and I have a specific request and that is prayer for finding housing for when I get out next week. We need to find a place to live until we find an apartment. Also another specific prayer request is for an opening down in Durham for Ben to be able to transfer jobs here so he can stay with me and also so dad can ge back to mom.

Pictures still to come of Transfer to Duke and also of the Bakesale from Friday. It made a little over $2200.00!!! So

Quick Update lungs

Ok, so had a rough weekend. As most of you know I was just discharged from PNH about 2 weeks ago, well this past Sunday I ended back up in PNH due to another bleed from my lungs. Today however brought some exciting yet scary news. I was flown to Duke Hospital today in hopes to get care here and as a bonus get on the organ list!!!! I am not listed yet, I speak with Transplant doc tomorrow and I think that is when I will sign the paper work. This has all happened so fast, so fast my husband Ben is not here with me yet. My dad is here with me now while Ben hopes to get his job transferred down here. Please pray that there will be an opening soon so that he can come be with me and please keep him in your prayers, he is so strong and he has alot on his plate right now, pray God keeps his strength up! As for me, I will post more and some pictures I had taken with the wonderful staff at PNH and the flight folks--who I must say are awesome!! Oh!! And the fundraising!! We are at $35,000!! God is so great. I am so exited and anxious all at the same time, but trying to keep it together! Aright, well that is all for now!

I would like to send a special thanks to all who are praying for my family & I. And to all my family who so SO MUCH for me. And of course to God, who has kept me & my family. I couldn't ask for more.
I Love You All.

Papa Update

Papa, Kevin, Gma and I


Papa & Kevin


Papa had been feeling real tired lately, so they decided to check his Hemaglobin and Hematacrit. His numbers were really low, so they transfused him Wednesday night. So please keep him in your prayers that he will regain some energy back and not feel so tired.

GOD IS GREAT!!

God is definately at work. The Fundraisers have brought in $30,000!!! It has only been two weeks! The bracelets just came in yesterday and the t-shirts have not even been ordered yet! There are still fundraisers to come! God provides! I just want to thank everyone who has donated, or volunteered! I'm blown away by this!

Thank you ALL!

Duke here we come!!