Buds at CFL

Chad and I. (Chad is a fellow Cystic who got his lungs in October)



All the pre-transplant cystics minus our friend Melanie. (We are still waiting that special phone call) :)



This is my bud Tom, he got his lungs right after Thanksgiving and is doing wonderful!!

Center For Living

So here is some of the staff that take care of me every week day as I work out. They are WONDERFUL and I love them all! I thank God everyday for them. They monitor stats, switch oxygen tanks, instruct on weight machines, bikes and the infamous 30 minute walk that NO ONE likes...but we love the staff! I wouldn't be in the shape I am today without them!


Sarah (PT)



Sheila (RT)



Rebekah (PT)




Rebecca (PT)

Dave (PT)

Finally, the finishing touches!

So, as promised here is Daisy's stocking and the end product, it's nothing great, but it did pass the time.

Our Tree and stockings...





Here is Daisy Dog's stocking...I guess she's been good...LOL

Now its Christmas

Homade Christmas stocking



Our lovely Christmas Tree!


Ben and I put up our tree over the weekend. Its not bad for a fake tree I guess. His Mom sent up 3 big boxes of ornaments and my aunt had given us a bag of ornaments, so between the two of those we have a nicely decorated tree. I also got a stocking made by his Mom and his aunt, since I am now an official Baumann, its really nice, check out the pics of the tree and stocking!


I bought a stocking and some puffy paints from the Dollar Tree to decorate for Daisy, once I'm finsihed I'll post a picture of the finished product!

Switching of the Guard

This past weekend my caregivers switched. Dad went back home and Mom came to take his place. She got here Monday afternoon.

We hit the ground running though. Early Tuesday morning, 3am I began coughing bright red blood up again. It was alot and it didn't slow down as fast as it usually does so I had Mom call 911 and I was taken to Duke via ambulance. Better to be safe than sorry I guess. I ended up staying the night and was sent home on 4 days worth of steroids to hopefully calm things down in my lil lungs.

I'm hoping and praying real hard that these steroids will be enough to last me and control these bleeds through Christmas so I can be home and spend time with all my family who is coming in ThursdayDecember 23rd and staying through December 26th.

As always I appreciate all the prayers from everyone. Hopefully soon I'll get that call for brand new organs and begin my recovery!

Little behind...

To catch you up: Well, Wednesday December 8th Dad took me to the ER at 11pm because I started coughing up blood and it was a little over 3 TBSP which is the rule the Doc gave me. So I was kept. Thursday I had my very first ever Bronch--not a fun experience. Due to my lung function being so low I could not be out under, I was only given spray lidocaisne to "numb" my gag reflex and a VERY small amount of versed to take the edge off. Well, lets just say I have a very strong gag reflex!! :) During the bronch a camera is inserted into the mouth and down the trachea into the lungs to look at the airways. The doctor squirted some saline into my lungs and then sucked it back up so he could have sample to look at to see what was down there. He didn't find anything out odf the ordinary or of concern, so that is a good thing. Some blood was brought up with the saline, but he was not worried. Afterwords he said I apparently did not like the procedure very well, he described it as more like assault and battery...lol. After the bronch I felt awful, was freezing cold, no fever thankfully though, but just felt like I'd been hit by a truck. Docs said this was normal they just needed to keep an eye out for any fevers because that was indication that the bronch stirred up some bacteria and I may have to start on some IV antibiotics. Hopefully no more bronchs until post transplant, they are much more bearable post transplant. So that was Wednedsay.
Thursday I was embolized again for the third time. That went fine, same old same old, doped up and mostly pretty comfortable. The only thing with this procedure is because they go in and cut off blood flow to large pulmonary vessels the lungs compensate by making new smaller vessels and apparently my lungs have made quite a few of them, so many that it is impossible to get them all, so the docs think that is the reason I continue to bleed despite the many embolizations.
I was discharged Satureday December 11 because I had not coughed up any more bright red blood. So Ben came and picked me up and brought me home. Well as soon as I walked in the front door of our apartment I began coughing and blood came up, only about 2 TBSP this time so I decided to stay home and if it happened again that night I'd head back to the ER.

I am feeling well and can't wait to see my family for Christmas!! Everyone is coming! My two sisters and their families, Ben, my brother Kevin, my Grandma! (who I haven't seen since July!!) and my Daddy!

Please keep up the prayers, I'm praying hard for Christmas organs or New Years organs! And please don't forget the donors family as aI've said before, thier loss is my gift.
Love you all!

Frequent Flyer Miles Pay Off!!

So my last hospitalization brought with it extra perks! As you know from my last post, I went into the hospital again due to some more bleeding from my lungs. While I was in, I was emobolized again, but still my lungs continued to bleed despite the treatment. So the "Head Honcho" got involved and appealed my case to the National Transplant Board. This meant he would present my case again to the board and they would vote on me and my case. My previous LAS (Lung Allocation Score) was 37, I am now 45. The scale goes to 100.

I also had clinic this morning and the Transplant Cordinator informed me that I was almost called in this past weekend for organs, but for some reason, only God knows, I was not.

So keep the prayers coming...God is hearing them, its just not the right time yet. As my Grandma said she prays: "Lord you gave the greatest gift during this season your Son, but you know the second greatest gift you could give is new organs to Kerry, but we will wait for your timing." It made me laugh so hard when she told me what she prays...I love her very much and she has a "direct connection" ;)

My friend Tom

Hey everyone, I wanted to let you guys know that my good buddy Tom from rehab got his call and his lung Friday December 3rd! I was so happy for him, he and I are good buddies. We would tease each other about being old because I am a young person hanging out with him and the other old folks. We also teased each other about college football teams. He is from Alabama, so he is an Alabama fan (NOT AUBURN!) and I am by marriage, an LSU fan. I wore my LSU hat on purpose just to get his goat. It was great. If you would please keep him in your prayers, last I heard he was doing great. I wish I had a picture to share with you, but when he gets back, hopefully I will still be in rehab and we can grab a picture together.

Got the Boot...

To my surprise I was discharged early!! I won't complain. I hadn't coughed up any more blood so they said I could go if I wanted! So of course I took them up on their offer! Dad and I were home in time to watch Jeopardy :). Its an answer to prayer that the embolization went well!

I am however very sore from the procedure, but I hope this will subside soon, docs gave me some oxycodone, but it hasn't done much.

On another note, my friend Pam, who got her lungs in July finally gets to go home. She's been through alot so she's so excited to finally get to go home! I'm very sad to see her go, but happy at the same time because I know how bad she wanted to go home to Mississippi. So please pray for her and her hubby to have safe travel and to keep her healthy!

Still waitin for that phone call from the organ store ;)

ps: And prayers for the donors family...their loss will be my gift.

Taking Advantage of My Frequent Flyer Miles

So I'm back in Duke Hospital. Coughed up some more blood Monday night and it was more than my baseline, so I went to the ER to get it checked out. They admitted me to observe me and the original plan was going to be to let me go home today (Tuesday), but then Doc stepped in and decided he wants to embolize me again to reduce the risk of massive bleeding in the future. So, tomorrow I will have the embolization and the plan is to watch me for 24 hours and then send me home if all goes well.

Please pray for the procedure to go well and for guidence for the doc's and nurses hands.

Thanks and love you all! Keep you posted. :)

Thanksgiving

This is my friend Pam, I met her at rehab and she is staying at the same hotel as me. She had her TX in July.

Mom, Dad, Ben and I Thanksgiving Day.

Things I look forward to doing after Transplant...

So after TX I will be able to do these again!! Can't wait!

1. Walk and talk at the same time (w/o hacking)
2. Laugh without starting a hacking fit
3. Shower without a leash (oxygen tubing)
4. Get dressed without my lips turning blue
5. Yell, shout and scream without a hacking fit
6. Exercise, any kind I want!
7. Walk up stairs again
8. Shop with two free hands! Not tanks to drag behind me
9. Go out and run errands without worrying about running out of oxygen (life gas) and packing extra tanks.
10. Dance and breathe
11. Sing without hacking
12. Play/walk Daisy
13. Work
14. Cook and bake without feeling wiped afterwords
15. Gain weight
16. Play sports
17. Put on make-up without taking off oxygen tubing
18. Be able to move freely through the house without leash (oxygen tube)
19. Not get up so early to make time for 90 minutes of treatments
20. Boogie board and skim board on the beach!! :)

I'm not being bitter here at all, this was just a fun list I'd been thinking over in my head. Dad and I joke alot about these things. Its the simple things that make the most difference and I look forward very much to my call and my new organs so I can do all these activities and more once again. But I am very grateful for what I have right now.

Bruised Belly Bliss!

So I found out today that I no longer have to stay on Lovenox...that cursed shot of a blood thinner!! My clots have shrunk down to a small enough size that the body should be able to dissolve them. I am so happy, no more shots in my belly! Thank you God!

Still a waiting that special phone call :)

Thanks for all the prayers still!

Pulmonary Rehab Graduate

WooHoo I got a certificate!




One of my caregivers :) Daddy (he is also proud)

This is late, but I've been without internet for a while, but I graduated Pulmonary Rehab. All that means is I completed 23 days of rehab. I still continue to go workout everyday for 2-3 hours.

Thanks for all the prayers, still doing well, just waiting for that phone call!

Time to celebrate!

I took boards on November 8th...I passed! I am officailly Kerry H. Baumann, R.N.

On another note, I'm still waiting for that phone call! :)

Thank you all for your continued prayers and support.

A Visit To The Dog Toy Store

Daisy's purple toy finally did bite the dust. It was barbell shaped and shehas held onto one of the balls on the end. Despite the fact we got her a new toy, she still ONLY plays with what is left of purple toy. BUT here are some photos of her playing with the new one...(we put treats in it!)

Hold The Lovenox Please!

So last night I coughed up just a tiny bit of blood, less than a tsp so we held the lovenox. I won't complain about that! My belly is a walking bruise. But I will start it back up tonight, but the shot break was nice I must say.

Please pray that I continue to stay well and healthy and these blood spells stay to a minimum.

As Dori would say...

"Just keep waiting. just keep waiting, just keep waiting."

(the fish from Nemo).

Check out the Update Daily Press did!

Back in August the Daily Press wrote an article on me. Here is an update that was written!!

http://weblogs.dailypress.com/health/peninsula-health-notes/2010/10/update_woman_awaits_multiple_l_1.html

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!!

Back To School Fundraiser Slideshow

This past Sunday there was a Back To School Fundraiser at the Heatherwood Apartments. I want to give a special thanks to James Braxton (the man who put ALL of this together) and to Rock Church of Newport News. Everyone was so kind and worked so hard! A little over $700 was made!!

Thank you so much James & Rock Church!!!

ToriBay Fundraiser Slideshow

The ToriBay Staff brought in a little over $6000!!! They are an awesome group of people!

Papa & Me

This is my Papa. We thought it'd be clever to take a picture of us because we are both on oxygen and when I come over I bring my big oxygen machine over and the house is a danger zone with all the tubing!!! But we are careful. If you could keep my Papa in your prayers, he is fighting cancer and has been for some time. His spirits are good and we love him very much but he has been dragging a little the past few weeks. He has a doctor appointment this am and hopefully it goes well. But please keep him in your prayers.

MercyMe - Bring The Rain

Update & Home!

I haven't updated in a while, I was admitted to Portsmouth Naval Hospital August 12th. I am home now, home as of yesterday!! Had some complications with my PICC line. Lost the PICC in my right arm due to a clot and then they had issues getting a PICC into my left arm, but finally got it and hopefully (pray hard!!) it will last. I wanted a Port put in but that was not an option due to the blood thinners I am on. Anyway I'm home with an increased lung function from 32% to 36%!!! Gotta love those roids!!!

The fundraiser at ToriBay Salon was awesome!! I'm gonna see if my sister can post the video/slideshow of pics on my blog. Thank you ALL who helped and came out to get haircuts!! I am blown away by God's awesomeness and how quickly He is working and bringing in the money Ben & I need to get down to Duke! It is amazing. I always wanted to be part of a miracle and I believe I am witnessing one!!! I can't even put into words how I feel.

Enjoy some pictures-My family

Ben & I


Ben & I at graduation

My aunt Jody and uncle Ralph

Me & my Momma :)

Mom, Dad, Ben & I

Ben, me, sister Maggie and her husband

Me, my sister Kelly and her husband

Me & my Grandma :)

These are left from graduation in May. It was a great day!!My grandma, my sisters and their spouses, my parents, my aunt and uncle and me & Ben.

A short OBX vacation weekend!

Ben & I were able to meet the rest of my family in Nags Head for the weekend! It was wonderful! We had a blast!

First ever...and a little behind.....

Ok, so I've had this site up for about a month now and I am just now starting to write. I've been a little tied up. So to bring you up to date my evaluation at Duke is finished and I am a good candidate for a double lung, liver and possible pancreas transplant. Duke called me two weeks ago and said they are ready for my husband and I to relocate to Durham!!! My friends and family have started fundraising efforts and have had a great turn out. The August 7th garage/bake sale went awesome! Made $2100!! I owe it all to my church friends and family. I am truley blessed with wonderful friends. Another fundraiser is on August 22nd at ToriBay Hair salon, my aunt works there and they are doing a cut-a-thon, car wash and raffle! We don't currently have an account for the money yet, I am filling out applications for the NFT (National Foundation for Transplants). NFT will collect the donations for me and set up a web page on their site to publicize the need for transplant.



It is all overwhelming at times, but also exciting. I also find myself being so grateful for my friends and family, without them this would not be possible. God truley has me in the palm of His hand and won't let me go.