Monday, June 30, 2008

My Golden Birthday

This years birthday was significant in several ways. When I was born the life expectancy for a CF person was 18 years old and now here I am celebrated my 25th, golden birthday. This was also my first birthday to breathe with new lungs and thankfully I was able to be out of the hospital to celebrate this special day. Also I got the most cards, e-mails, and messages (comments) I have ever gotten on any birthday from friends & family and, WOW, that sure made my day!
I had some friends (Carrie W. Heather, Beth, Carrie B.) come and surprise me with gifts for me and Faith and help me celebrate the big day. I had just gotten out of the hospital that day and when I walked into the Town House, Emily T. had decorated the whole apartment with balloons, confetti, streamers, and a cake! Needless to say I enjoyed the afternoon very much!


I was able to blow out my candles!


FREE 2 DREAM!

To top it off we headed out to a nice dinner at Carrabbas with our friends, Matt & Shay and polished it off with some yummy cheese cake from the Cheese Cake Factory (one nice thing about living in the big city, lots of good restaurants).


Shay, Faith, Me, & Emily T.

Our Family!

Jason & Matt

This picture cracked us up! It looks like Faith had a little too much fun at the party!

Yummy......nothing like cheese cake on the face!

P.S~ I got home from the hospital today, Praise God! We pray I don't have to go back for a long time. Things are looking good so far and we will be going to our first clinic day on Wednesday and a bronchoscopy (a lung biopsy to check for infection or rejection) on Thursday. Please be praying for these tests. THANK YOU!

Saturday, June 28, 2008

Another Request for Prayer

Emily went back to the emergency room late last night for some severe abdominal cramping. She has been in pain on and off for the past couple of days, particularly after she ate, and it continually got worse last night to where the pain was unbearable. All other issues look good, it just appears that this is another side effect of the medicine in her body and they are working to help her pain and get her body functioning back to normal.

Please pray for her and Jason today. She was in pain all night long and neither one of them slept. It looks like it is going to be a long day today too. She is back to her 3rd home...the HTICU...where at least things and people are familiar.

Friday, June 27, 2008

My Recovery

Here are some pictures of my recovery........


This is the first time Faith got to see me with NEW lungs (the day after surgery)!

Our family together again!
My first real meal
My 10" incision on each side and 103 staples

My first walk less then 48 hours after my surgery. Praise God!
My brother, Ryan was able to be here during my surgery

A picture of what my daily walk looked like with 4 chest tubes, IV pole & walker.

The joy of doing bubbles in the hospital with Faith

My best medicine!

Finally home to the Town House!

Thursday, June 26, 2008

FAQ

First, let me say that Emily came "home" to the town house about 2 PM on Wednesday and is doing really well. She was able to enjoy a great birthday with family and friends! Because she was in the hospital, she did not go to Clinic which means she probably had more free time on her birthday than she would have otherwise. Another unexpected blessing. God is so cool. :-)

Here are some answers to a few frequently asked questions:

1. Mail - Please continue to send all mail, gifts, packages, etc. to their home address. They are currently having their mail shuttled from home and will hopefully get there mailbox set up here so they can have it officially forwarded through the postal service. Since they don't know how long they will be at the town house, they don't want to have mail sent here only to be gone before it arrives. If you do not have their mailing address, please email me.

2. Practical Help - If you would like to help them with practical needs, please see this post and this post.

3. Financial Help - If you would like to help them financially, please see this post and this post.

4. Staff Infection - While Emily was in the hospital the first time, they found a staff infection called MRSA during her bronchoscopy. Her bronchoscopy that was supposed to take place this week was rescheduled for next week. However, Emily has no symptoms and said that most "healthy" people can carry a staff infection like MRSA and not even know it. It just becomes an issue if it flares up. So right now, it basically is not an issue or anything of concern.

5. Blogging - If you want step-by-step directions on how to comment on the blog, please see this post. If you are interested in starting your own blog or just understanding more about what blogs are, check out this link.

6. CF - If you are interested in learning more about Cystic Fibrosis, please visit www.cff.org.

7. Lungs - Emily's new lungs do not have her genetic makeup since they are donor lungs. Thus, her new lungs do not contain the CF gene. Because of this, these new lungs will not deteriorate the same way that her old lungs did. They will basically not be damaged by her CF but by having a lung transplant, she is not cured from CF either. Her body, particularly her sinuses and pancreas are still affected. The concerns about her lungs turn to rejection and infection of her lungs which will be an ongoing but hopefully, very minor part of her life. She is advised to wear a mask in unhealthy situations like unclean/dusty air, congested areas like malls, when other people around her are sick, or when children have their vaccinations. She is still clarifying with her medical team about specific situations and it will continually be a learning process to adapt to life with new lungs. She also will always be on anti-rejection meds.

8. Donor Family - Neither party is allowed to contact the other party for at least 6 months, possibly a year. Then, if either party declines contact, there will be no contact. Emily and Jason plan on writing a letter to their donor family and are hopeful that they will want to be contacted and they will get a chance to meet them. I cannot even imagine what that day would be like! Emily also said that UAB has an annual gathering of some sort for donor families and organ receivers.

9. Post-Transplant - Emily's 8 weeks started the day of her surgery. Sunday will mark 3 weeks! Someone has to be with her 24/7 for the first 8 weeks and they are supposed to be close to UAB to attend clinics and for situations like her Monday morning scare. They are hopeful that since home is not too far away, that they will be able to go home sooner than 8 weeks. It will be a couple of more weeks before that is even on the table though. The Town House is a block away from the hospital entrance and is very suitable for their living needs. But, there is no place like home!

10. Post-Seizure - Emily was in the hospital for almost 3 days following her seizure. They ran many tests including CT, MRI, EEG, (and some other ones that I can't remember), and everything turned out fine. The med she was on, Prograf, is one of the anti-rejection meds and one of the side effects is seizures. Emily just happens to be one of those in that small percentage that are affected. They are taking her off of that medication and putting her onto a new medication that is a very similar med. Hopefully her body will like that one much better!

Ok, I think that's it! If I missed one of your FAQs, please leave a comment. Thanks so much! ~Emily T

Wednesday, June 25, 2008

Happy Birthday Emily!

Today is Emily's birthday and she will hopefully be getting discharged from the hospital today. Let's leave her lots of comments and messages to wish her a very Happy Birthday! We love you Em and are so thankful for your life!

P.S. If you have had trouble commenting, here are some step-by-step directions to help you out.
*Note: You can comment without signing up for a Blogger account.

At the bottom of each post, there is the date it was posted and the author (Emily) and then the number of comments. Put your pointer over the word comments and click the link. It will take you to the comments page for that post.

On the left hand side are the comments that have already been posted (if any) and the right hand side contains the box to leave your comment. Type your comment in the box and if you do not have an account and don't want one, be sure to put your name so she knows who the comment is from.

Next, if you don't have a blogger account, it will ask you for a word verification. This is to help protect the blog from getting spam from "people" who should not really be commenting on the blog. Just enter in the sequence of letters or numbers in the blank.

Then scroll down to where the orange text says "Choose An Identity". Click in one of the circles next to Google/Blogger (if you have an account or a blog using Blogger), Open Id (if you have a different blog like Wordpress), Name/URL (if you want to just type in your name or if you have a website you want to list), or Anonymous (if you don't want to enter anything). Be sure to fill out the blanks it provides you. I highly recommend you at least use Name/URL to identify yourself by having your name linked to your comment.

Then click "Publish Your Comment" and your done! Hope that helps!
~Emily T

Monday, June 23, 2008

New Beginnings

Despite my scary, early morning ordeal I'm doing better this evening. We just continue to take one step, one day at a time. People have been asking me though the changes I can already tell by having new lungs so I thought I would joyfully share the miracles I've experience so far with new, healthy lungs.

1) Being able to breathe deeper then I've ever done before and as the pain continues to go down I know it should only get better! I love seeing my oxygen 100%! Amazing!

2) Walking without oxygen and not getting out of breath. Before I did a treatment in the morning I would get out of breath just walking to the bathroom and back.

3) Not having to do my treatments or vest (which would knock down my mucus) anymore. Which I still "struggle" with feeling like I need to do my treatments before I go to bed or wake up in the morning. I've always been use to being the last person to go to bed and the last to get ready in the morning due to all the medical things I needing to get done. It feels too easy to just have a normal bed time routine and go to bed but it's something I think I can get use too real quick.

4) Not having my daily/night coughing and being able to sleep on just one maybe two pillows versus 3 or 4 prompt up in bed.

5) Although the side effects are different then the meds I have taken all my life and there are changes that I will have to make for the rest of my life but the med routine is nothing compared to what I was doing before.

6) I do have to wear a mask for the next 4 or so weeks while I'm out in public but it sure beats carrying an oxygen tank with me where ever I went and struggling for every breath.

7) A joy I've never known before is being able to laugh without fear of it turning into a coughing spell and even though the pain prevents me from the totally freedom of that I can laugh more then I've ever done before.

8) I'm able to sing and read to Faith without running out of air. I love it!

9) People have also told me how much stronger my voice sounds and of course my color is much pinker and heather looking.

I know there are more but these are what come to mind right away. Again we know there are many what-ifs but we so rejoice for the opportunity the Lord and my donor family have given me. We don't know all that the future hold but we did know I was running out of time and to be totally honest I'm not sure if I would have made it another year. Yet the Lord has and continues to be gracious and your prayers continue to give us strength and support! We love you!

"I love the Lord because he hears and answers my prayers. Because He bends down and listens. I will pray as long as I have breath". Ps. 116:1-2

"Let us draw near with confidence to the throne of grace, so that we may receive mercy and find grace to help in time of need". Heb. 4:16

Please Pray

Emily is back in the HTICU after having a seizure this morning around 5 am. After seeing Emily, the doctor believes it is a specific medication that caused the seizure and they will now need to regulate it again before she can be released. This was the last medication that they were trying to regulate before she was discharged. That is actually somewhat good news because they know the cause and it is not related to other complications.

Jason was with Emily when it happened, the ambulance got here right away, and by the time I came back up the elevator with the paramedic, she was alert and knew what was going on. It was still very scary. She had 3 smaller episodes after they got her to the hospital but they were more confined and she was more aware during them but was just not able to control her eye movements or head.

Please pray for her (body, mind, and spirit), for the doctors to quickly and decisively figure out how to regulate this med so that it doesn't happen again, and for Jason as he had a very frightening early morning and as he tries to care and comfort her.

On the lighter side, Emily had a wonderful day yesterday! Saturday ended up being a harder day because of being sore and she seems to continue a pattern of one day is good, the next day is bad. But yesterday, she got some good walking in, some great time with Faith, and was even able to check off her to-do list of things that were left undone before the surgery. It is amazing to me how her mind and heart are so focused on others and not missing out on the important life events of others.

Saturday, June 21, 2008

Together is Better

Hi! It's Emily Tardy again. I'm sitting here with Faith listening to music and dancing while Mama takes a nap and Daddy is at WalMart. I thought I'd update you really quick to say that Emily had a GREAT day yesterday. It was her first full day at "home" (the townhouse) and it was so good to be all together as a family for a full day.

She felt really good and had a fun last day with Nana. Stephanie left this morning to go back to Lubbock. Em is a little sore today but otherwise is still feeling really well. I almost cannot believe my eyes at how well she is doing. It is crazy to realize what she has been through over the past 2 weeks and that she is now up walking around and experiencing a whole new way of life. Her incisions are healing up really well too.

Well there's a quick update! Have a great Saturday! ~Emily T

Thursday, June 19, 2008

HOME!!

Praise the Lord we are home (the Town House)! It took a while getting all my medicines ready to go and making sure we had all the information we need to start a new life with new lungs. They have a wonderful, special tradition when a lung/heart transplant patient is discharged from the unit all the nurses stand around while you get to ring the "Bell of Life" and everybody claps for you! It was a very awesome feeling ringing that bell. You could proudly ring that bell knowing you had reached the top of a big mountain and ready to begin a new journey. During my stay I got to hear the bell ring twice and it was just a great feeling knowing someone had been given a second chance at life and they were moving on to a life they have been dreaming of for a long time.



I have to say Faith was ready for all of us to be home together! Every since we left the hospital she has not left my side. If I walk into the other room she is quick to follow and make sure I'm not leaving this time. She has been so talkative tonight as if she has to catch up with me about all I have missed the past 11 days and her hugs are so tight that my heart just melts knowing it has been tough for her as well as for me being a part. Yet, we are thankful to finally be together again!
I'm feeling pretty well and the pain is much better controlled now. Next week well be a little busy as we need to go to clinic Monday and Wednesday for lots of tests. We are still very much in the beginning stages and there are so many what-ifs but we just continue to take each day, one step at a time with the Lord. He has been so gracious to us through everything and my heart leaps for joy at the opportunity God has given me to do things I have not been able to do for a long time or ever for that matter. Thank you again for everything you all have done! We truly have been blessed with the most amazing family and friends who have supported us in every way! We love you!


~Emily, Jason, & Faith

Wednesday, June 18, 2008

Thank You!

"But encourage one another daily, as long as it is called today." Heb. 3:13

This is what you all have been doing for me as I recover and I can barely type the words THANK YOU without tears. Your prayers and encouraging words have meant everything. It's been a difficult couple of days but I just have to remind myself how much God has done, despite the pain I have wonderful, healthy lungs and everything else is looking good. All the doctors say my lungs sound better then any lungs they have heard post transplant. Praise God! They also took out a little less then half of my 103 staples (yes, Jason had to count them). Faith was sitting right beside me when they took them out and she was quite concerned and kept saying, "Oh no, Oh no". Although she was worried she did not want to leave my side and of course she was a good support for mama. Even though she is not to fond of the hospital room she is so sweet always wanting to sit by me and give kisses and hugs. Good medicine for mama!

We pray this pain medicine works so I can maybe go home tomorrow! I am still struggling with nausea so that is the other thing they want to make sure is OK before I leave.

I better head to bed but I wanted to say hello and thank you again! We love you!
~Emily

Interesting Night

Emily had a very interesting night last night. She got some pretty decent sleep last night which is great news and allows her to walk more which is key to her recovery and release from the hospital. The pain regimen continued to work fairly well which is a wonderful praise (she is holding steady at a 3 or 4)...well at least the part that was given to her. ;-) She is having a hard time celebrating those victories at the moment...

The night time nurse was not Emily's favorite person and will not be her nurse again after last night. Let's just lovingly call this nurse grouchy and say that it did not leave a very good taste in Emily's mouth this morning. After all that Emily has been through and this special meeting with the Acute Pain Team yesterday, it was quite frustrating to have a nurse who had never taken care of Emily before, question everything all night long and not want to give her what was prescribed for her. If I can hear Emily's voice last night it would probably sound something like...GRRRRR. :-)

She thankfully has a wonderful nurse this morning which I hope will make that bad taste disappear sooner than later but she is quite defeated at the moment. In trying to see the good in this and trusting that "for those who love God all things work together for good, for those who are called according to his purpose (Romans 8:28)", I'm hoping that the fighter side of Emily was awakened a little bit more last night, and that she can allow God to use all of that frustration for good through the power of Christ in her.

~Emily T

Tuesday, June 17, 2008

Transplant Fund & Pain Update

I hope you are enjoying the beautiful Tuesday afternoon! At least it's beautiful here in Nashville!

Thank you so much for those that have donated to the transplant fund. These dollars will be a huge blessing to them as they live with the continual medical costs that are accumulating from the lung transplant and the months and years of recovery and meds that follow. (See top box on right for the links to donate).

I wanted to clarify the details about the match. The match that is promised is a one-time 100% match totaling up to $2000. However, it will be applied for any amounts given in individual contributions. In other words, you don't have to give $2000 for it to be matched. If you give $50, your money will be matched another $50 to make $100 given into the fund. So whether its $5, $25, $50, $100, or $1000, it will all be matched until those individual dollars equal $2000 (which would then total $4000 in the fund including the match). If that is confusing, please let me know in the comments and I will try and explain in a different way. There is a reason I am not a teacher. :-)

This match is just a great way to know that your contribution is going so much further and will help expand the benefit for them for at least another month's worth of bills. Their estimated expenses for co-pays, prescriptions, doctor visits, etc. is $1000-$2000 a month. And all of the post about the fund are from me, Emily T, not from them. I know what it is like to have needs and I also know what its like to desire to help and give and just need to know how. This is just that, an opportunity, and I wanted to make those that love and care about this family aware of it. Thanks!

Emily met with the Acute Pain Team that handles long-term chronic pain and the new regimen they are using over the past hour has taken Emily from an 8 to a 3 on a scale of 1-10 for pain. This is HUGE and definitely good news. Jason said that over the past 3 days or so, she has been in the lower pain category for maybe 3 or 4 hours total. Please pray that this regimen works continually and that it lasts through the night and hopefully through the next several days! I also talked to Emily and she is encouraged but a little timid about getting her hopes up. My personal prayer is that no matter how much time of relief this gives her, that she would use this time to gain fresh hope and perspective to continue on this road of recovery. Thank you so much for praying and ask that you continue to do so, particularly for tonight's rest. The nurses have been very sensitive to coming in at night now and if Jason doesn't snore too loud and her pain is controlled, she is a great opportunity to refresh during some much needed sleep.

~Emily T

Care Calendar

If you live near or will be traveling to the Birmingham area and would like to help Emily, Jason and Faith with some practical needs like home maintenance (mowing, watering the plants, painting, cleaning), meals & groceries, errands, etc. please email Carrie W who has set up a Care Calendar for them.

Please use this calendar anytime you do anything for the Mulkeys, even if you call them and set it up yourself. If you take them their mail and put it on the Care Calendar, then other people can see that that was taken care of and can look at what other needs they can meet without everyone having to continually ask the Mulkeys what they can do to help. It's easy to use and helps others even if it does not help you, if that makes sense. Once you email Carrie to get the Security Code, go to www.carecalendar.org and type in 1778 for the Calendar ID and then the Security Code.

THANKS SO MUCH! Your support is greatly appreciated and helps SO much!
Emily T & Carrie W

Monday, June 16, 2008

Slow Recovery

Monday is coming to a close and it has been another trying day. In an attempt to give Emily some relief from the pains of surgery the doctors are trying a new pain plan. The new regiment of pain medicine and muscle relaxer does not seem to have done the trick so far but we are still hopeful. We are so thankful that Emily was able to sleep good Sunday night and her pain was manageable first thing this morning. Today's trouble started soon after our morning walk. Emily started to feel nauseous and the pain was coming back. By 2:00 P.M. her pain was so bad she couldn't get out of bed. We had a post-transplant meeting at 2:30 that we would not have made it too if it hadn't been for some strong pain medicine given right before we left. After fifteen minutes in the meeting we had to leave because Emily was nauseous and feeling faint. Soon after returning to the room, Emily was able to get some much needed sleep and seemed to feel a little better by dinner. Unfortunately her pain relief was short lived and tonight has been a constant struggle for relief. Dr. Young thinks a lot of the pain is from the new lungs settling in there new home, and he is still hopeful this new pain regiment will work with a little time. Both me and Emily hope so too.
On a more positive note we would like to share some praises. Even on bad days God is so good to show us his love. Today two friends from church came by to visit with Emily. They brought lunch, gifts and most importantly friendly conversation. They also took the time to watch Faith as Me, Emily, and Nana went to the post-transplant meeting. One of the gifts they brought was a Dora and Diego bubble blower. (Faith loves bubbles). Faith was a mess most of the day and this simple toy brought so much joy to her, and in turn to us as Faith sat calmly in mamas lap and blew bubbles for an hour this evening. God knew Emily needed that time of peace with Faith and I think it renewed her spirit to keep fighting
The Doctors are very pleased with Emily's progress and they feel everything is going very well. Thank you for all your prayers and please keep praying for pain relief for Emily and a speedy recovery. Thanks, Jason

Monday Update & Prayer Needs

Today has continued to be a very rough day for Emily. The pain is still not under control and they are still having difficultly finding the right combination of the various pain medications to give her some relief. She is also struggling emotionally since dealing with the pain and the vast changes that her body and life are going through have left her pretty drained and feeling very weary.

The good news is that the final two chest tubes were removed yesterday! This should hopefully help with a lot of her issues that she is experiencing but I know that your interceding on her behalf provides the best encouragement and support.

Please pray specifically for these things:
* Good sleep and rest
* Relief from pain and for the doctors/nurses to find the right combination of pain meds that will work for her
* Fresh hope, faith, determination, courage and strength for Emily as well as Stephanie & Jason
* A renewed spirit, focus and clarity even in the midst of such pain
* The medical staff to have wisdom & discernment as they seek to help Emily heal and recover
* Faith as she adapts to many changes in environment, time with Mama, and with a Daddy and Nana that are doing their best to love her and take care of her along with her Mama
* Good rest for Jason & Stephanie along with patience, discernment, and energy

Thank you for continuing to lift them up and for your love and support!
~Emily T

Sunday, June 15, 2008

Father's Day and Chest Tubes Out

Daddy Jason was suppose to write on Father's Day but it's been a long one and he is just worn out. I stayed with Emily last night and we may have gotten a couple hours of sleep. Between bouts of pain, leaking around chest tubes and multiple dressing changes, high blood sugars with insulin shots, coughing up old blood, vital signs, many medications, and blood draws there is not much rest.
This morning Jason came to the hospital with Faith and Emily gave him a card and a few gifts. She is pretty amazing (always prepared).
It's incredible though, how fast things can turn in the course of a few minutes. Right after the mini celebration she started hurting with extreme pain again. Nothing relieved her and coupled with total exhaustion she was at the end of her rope emotionally. It is very hard to see her going through all this. It just tears us apart and makes us feel so helpless as we see her suffer.
One good thing that happened today is that the doctor took out her remaining chest tubes. Now she can sleep on her side instead of on her back where her incision is. Hopefully this will relieve some of her pain.
Another bit of news that we received today is that the bronchoscopy she had right after surgery showed that she has a staff infection called MRSA. We don't know all the implications that this will bring but right now she is not having any symptoms from it.
Tonight she is totally exhausted and needs a good night sleep above all else. Tomorrow we will attend a post transplant class where I'm sure we will learn a lot.
I hope I didn't sound too bleak as I tried to share the reality that she goes through each day.
She has basically had a solid year and a half of sickness and pain and she is weary. Please pray that God will give her strength to keep on walking towards the new life that awaits her.
~Steph (Mama)

Saturday, June 14, 2008

Saturday News from Mama

I get to be one of the official blog writers today. It has been such a privilege to be here with my sweet daughter and see this miracle unfold. It still doesn't seem real except for certain signs like....no coughing and no need for oxygen. Those two things make me realize that she is about to embark on a new way of life and I am thrilled for her.
Having said that ....I wish we could fast forward past the recovery period because even though this is a wonderful gift it is hard to go through the healing part.
Yesterday was a very difficult day. It seems like she has one good day then one hard one. The nurse gave her a very thorough sponge bath and hair washing which was great but afterwards she started having extreme pain. She was given an extra dose of pain medication but continued to hurt most of the day. The doctor decided to give her a pump where she could control her own pain medication. That has helped.
Just now at 12:30 p.m. she is one step closer to freedom. She just got a chest tube pulled out so now she is left with just 2 more to go. Emily says that today she feels the sorest that she has felt....like someone beat her up. And indeed it's almost like that.
Another good sign that she is getting better is that she is wanting to coordinate things with Faith and making a list of what to do for the day.
Jason and I have been taking turns with one of us spending the night with Emily and the other staying with Faith at the townhouse. Last night Jason stayed with Emily and (bless his heart) it took her many tries to awaken him. He slept right through x-ray coming in to take a picture of her. She needs a cold wash rag to throw at him......just kidding.
To sum up this little entry..... I thank God for the kindness that He has shown to Emily in providing her a beautiful set of lungs and look forward to seeing her do things she has only dreamed about for so long. She is so precious to me and I'm very glad I can be here to experience this new start with her. Love, mama

Thursday, June 12, 2008

Day 4

What a joy it has been for me to check my blog and read all the comments from our family and friends! Although I need to head to bed since last night was a rough one and I ended up not getting much sleep, I wanted to give you a day 4 update.

News for today~ Although they removed one of my chest tubes yesterday I still have a small air pocket on both of my lungs that need to re-inflate. They don't want to remove the tubes until it has totally re-inflated which I'm all for because although I want the tubes out I don't want them put back in! It is very common for it to take time for the lungs to go back to their normal size so it should resolve itself hopefully soon. Even after the lungs have re-inflated all the way it still can take several weeks for the lungs to regain it's full function again. Meaning my lung function test that use to be 16-19% should continue to go up, maybe into the nineties! Wow, I can't even fathom! My lungs sound and look great on the x-rays and the doctors are more then pleased with my progress!
I got to walk 3 times today and made 3 laps each time, believe it or not I enjoy walking because I get so stiff in the bed due to my incision in my back and the chest tubes. And they want you to walk walk walk! It was so sweet when Jason showed Faith my two incisions on my back and she very sweetly said, "Oh no, Oh no". She has made sure mama is being taken care of and she watches very closely whenever the nurse or doctor examine me. She thinks she is quite in charge and I think we are beginning to think she is right. =) Just kidding

Prayers Request~ They have stopped one of my medicines due to my kidney levels being a little high so as they try to change or get my medicines right for my body they have to watch my liver and kidneys. We pray those organs continue to do well with everything that is going on in my body. Pray for Faith as she has done well but is having a tough time with the craziness of all the changes but I think she is getting better. As always pray for Jason and my mom has they tend to all of my needs and Faiths. Pray for sleep for me as it's hard with the in and out of hospital life as well as just trying to be comfortable to sleep.

Well, I better stop here since my mind is getting quite fuzzy and I will probably begin to repeat myself or not make much sense. Thanks again for everything! We love you!

~Emily M.

P.S- if you have questions I can try to answer them but we just want to keep you as best updated as possible since you are our prayer warriors and much appreciated support!

Wednesday, June 11, 2008

My first post with NEW lungs

It's hard for me to describe all that I am feeling right now because I haven't felt like I have been able to process everything for myself but some words that come to mind are~ thankful, joyful, tearful, in shock, painful (but a good pain, one that I can see the light at the end of the tunnel) but mostly feeling like I am walking in a dream. I told my mom I feel I am in the hospital for a really good tune-up (a tune-up was what I called it when I got my IVs to clear up an infection) and I'm waiting for the normal feelings of shortness of breath, lots of coughing and the usually pain to be coming back. I see the number %100 for my oxygen and really can't believe that is my number and I am dealing with more a mental block thinking I still need my oxygen when I really don't! I hope in time I can post more of the stories and thoughts from the past couple of days but I have been so blessed and overwhelmed with joy to read all your encouraging words and prayers, that I just HAD to say THANK YOU! I can't tell you what an amazing support your comments have been for us and you all have been a real witness to those who have seen how many people have reached out to help us in every way! THANK YOU~ THANK YOU~ THANK YOU!
All the doctors have continued to tell us how amazed they are in my progress and the quality of the lungs (please continue to pray for the family who gave me, a stranger, a second chance at life) I got and I have to say I am shocked as well but then I know it is the Lord's hand that has walked beside me, held me, and He still is the ultimate healer. Praise the Lord!!!!

I wanted to share a couple of verses that God gave me as I waited for these new lungs.

"Before they call I will answer, while they are still speaking I will hear". Isa. 65:24
(I know the Lord was speaking to his people here in Isaiah but in 2007/2008 those words gave me hope that even before the transplant coordinator called me He had already put in motion His perfect plan. He had already answered before I ever picked up the phone)

"You restored me to health and let me live. Surely it was for my benefit that I suffered such anguish". Isa. 38:17
(There was a reason I waited a year for these lungs and went through some difficult times and though I hate to suffer I am thankful for what I have learned and only pray I come out not only with healthy lungs but a changed daughter of the Lord. He never wants my suffering to be in vain, thank you, Lord!)

"The God who gives life to the dead and calls things that are not as though they were. Against all hope, Abraham in hope believed and so became the father of many nations, just as it had been said to him..........21) being fully persuaded that God had power to do what he had promised". Romans 4:17-21
(At times it felt like we were running out of time but this verse kept coming back to me that when it seemed like there was no hope for Abraham and his wife to have a child because of their age that he just continued to put his hope in the Lord and believe He could do anything! That sometimes the things we consider dead or hopeless are the very things God brings to life and brings hope when there is none to be found. My husband continued to share this very thing with me when I felt like I just couldn't do it anymore) Again I am thankful to you all for your love, support, and prayers. It has helped me to continue the good fight. Thank you!
Now, you know why Emily T, has been a very good friend of mine for so long. She has stood by me through some difficult times, put up with me and she is still around for whatever reason wanting to be friends. hehe =) Just kidding! Thank you, Em, for keeping everyone updated! love you, friend!
I will try to post when I can but I think Emily will continue to do some as well. We love you all and just want to say with you, PRAISE THE LORD!

Breaking News!

They just turned Emily's oxygen off and her saturation is staying between 97-100%. It has been about 1-2 years since she has been on oxygen basically 24/7 so this is very exciting. I'm sure it feels nice on her face, nose, and ears too.

And if that wasn't great enough news, Emily is eating her first solid meal and is now officially on an unrestricted solid diet!

Afternoon Day #4

Emily was moved to the low-acute step-down unit at the front of the TICU! Yay! This means she no longer has restricted hours for family visits and that Jason or her mom can spend the night with her tonight. This is such an encouragement.

She has also been up and walking again and had one of the chest tubes taken out. Another great step. She seems a lot more upbeat today about her progress.

Emily's Dad and Ryan are heading back to Texas today. Mitzi and Tom are making a trip to WalMart to stock their townhouse with food while Faith and Stephanie take a nap. Seems like a good fourth day so far. I'll have more Q & A answers soon as well as more details about how to serve and help them.

Thanks so much! ~Emily T

Q & A Response #1

Until further notice, please send all cards, letters, etc to their home address. Jason is working on getting a PO Box near the hospital so that their mail can be forwarded directly to them but that has not yet been confirmed. I will not be posting their address on the blog for privacy reasons but you can email me and I can get it to you.

I'll update you on visiting hours and options soon as well. They need to get settled into the step-down unit and get Emily's pain under control before she will be up to many visitors.

If you would like to help them, here are some current options (I'm sure more will be added as time goes on):

* Purchase and send restaurant gift cards. With the amount of hours they have spent in the hospital, I bet you can only imagine how much more appetizing other food sounds. Also, once Emily is released to the townhouse, they will probably have a very busy schedule and to be able and just stop and pick something up would make life a lot easier. Some restaurants located nearby are: Chili's, Jason's Deli, Subway, Sonic, Chick-fil-A, Five Guys Burgers, KFC. I'm not sure if all of them have gift cards but a quick google search can probably tell you. Also stocking their townhouse fridge/pantry is an option too.

* Donate to their transplant fund through a tax-deductible contribution: Please visit the following link. Please be sure to click "CONTRIBUTE NOW" at the bottom of the page and then find EMILY MULKEY on the next page and enter in your amount and follow the prompts from there. These dollars are used solely for the massive medical costs of a lung transplant and the many doctors visits, prescriptions, co-pays, etc. You can read more about the fund at www.transplantfund.org. Their numerous expenses include....A LOT of copays for check-ups and prescriptions (she will have a whole new set which includes her anti-rejection meds that she has to take for the rest of her life) which is ~$1000-$2000/month out of pocket on top of any deductible and percentage of the expenses from the surgery based on their insurance coverage. Although they have been preparing for these increased expenses, this is a GREAT way for us to meet a very practical need and help lighten the financial burden that they will be facing.
***Special Note: Someone has offered to do a one-time 100% Match up to $2000 for contributions made to their fund! This is a HUGE blessing and a great encouragement for us to join this effort. Wow! A series of continual blessings from the Lord.***

*Emily & Jason will be putting their house on the market soon too. They have been planning for almost a full year to move to Texas post-transplant and I know Jason's brother is ready to have him back in the store, not to mention that their entire immediate families will be all in the same town again. I'm sure we could hear a big sigh and maybe see a tear fall from those of us in the Southeast but a big Texas YeeHaw! would probably drown that out. :-) As much as we selfishly might not want to help them leave Alabama, I'm sure a few helping hands over the next several weeks would be significant. I've heard Jason mention some painting, finishing work on the basement room, organizing the garage and probably some general pre-listing maintenance would be beneficial. If you want to help out in this way, why don't you leave a comment here and I'll direct them to him. This probably will be in the next few weeks, not immediately. A special thanks to Matt & Shay for helping watch Faith during the surgery and for cleaning their house!

Evening Update Day 3

Emily ended up having a GREAT day! She was able to do some things to help her feel better and more comfortable like brushing her teeth and getting a warm foot bath. After talking with Jason this evening, they seemed encouraged by her progress. She ended up walking for 1 and 1/2 laps around the TICU and it is quite a long circle of hallways! This is wonderful news. She was also able to get her IV out of her neck (which is nice to have one less thing poking at her!) and have her dressings changed on her incisions. This afternoon brought a much anticipated visit from Faith. Mimi, Jason's Mom has been taking care of her and although Em was able to talk to her on the phone and hear her say "Mama", it is just not the same as getting to see her in person. What a continued reminder of the beautiful miracles in the Mulkey family! Her pain is still a bit of an issue but it is definitely being managed better than last night. There is a good chance she will be moved to the step-down low-acute section of the TICU tonight or tomorrow. This means that Jason or her mom can spend the night with her in the hospital.

And a personal side note from me...I had to leave for a wedding in Texas and will be updating probably 1-2 times a day through this coming weekend from details I get by phone. As Emily starts to feel better and gain more energy, you will likely see her make a post or two later this week but I will still do my best to keep you in the loop. I know how much easier it is for them to not have to repeat the same updates over and over again and to be able to focus on Emily's recovery. They so value your prayers, comments, and words or encouragement and it gives them such comfort to know that you care. I was able to read the messages you left for them and they were extremely touched. For those that they did not know or had not seen in awhile, it was especially meaningful to hear from you. And for those who are apart of their lives now in Alabama, your sincere and thoughtful words brought such encouragement and gratefulness. What wonderful friends you are! Keep 'em coming! She also has her little verse notebook that her Moms group put together right by her bed. What a precious perfect gift that is! Also, if you love music...the Chris Tomlin Arriving album is a great one! I listened to it non-stop from Nashville to Birmingham and back and every single song fits so perfectly with Emily's story. Listen to the words of The Power of The Cross and thank Jesus!

Tuesday, June 10, 2008

Q & A

If you have questions or would like to know something that I have not included so far, please list them here as a comment. I will do my best to answer them or find out the answer if I do not know it. Be patient with me too! But, your questions will help me know what to include in future posts. Thanks! ~Emily T

Couple of Pictures

This was pre-transplant before she went into surgery:


This was her first time sitting in the chair after surgery!

Morning of Day 3

We found Emily this morning still struggling with her pain but a visit from the NP and the doctor, brought a new strategy. They are adjusting how often Emily receives her main pain drug from every six to every four hours and switching to a new in between pain drug that has worked for Emily before. With her many previous lung collapses and constant medical and physical battles, she is no stranger to pain or pain meds and knows quite well what she needs. I think she was heard well this morning and are hopeful that this change will work. If not, the next option is an epidural.

The doctor also said her xray looks good. She has received a blood transfusion this morning as well as her blood counts are a little down after surgery. This is usual after surgery and should help her feel a lot better this afternoon.

She did get moments of sleep last night in between the usual interruptions. Thank you so much for those who prayed last night. It truly helps. Sleep, pain control, and no infection or rejection of the lungs are some great things to continue to pray for at this point.

She sat for another hour in the chair this morning and was about to try to walk for the first time when they came in to do the transfusion. So, she will rest awhile, and then try this afternoon.

I forgot to mention last night that she was able to briefly meet Clay, a 25 year old male with CF who had a double lung transplant 2 weeks ago. He was up walking around on his own and had lots of encouragement for Emily. He said he had a few rough days at first but it was great now and they will probably get to spend some time together in clinic/rehab. Also, Emily knows so many of the patients and nurses here because of her previous dry runs and calls. She has many people rooting for her!

Jason will be here soon to bring Faith! Emily is very anxious to see her sweet girl. He will be moving everyone and everything into the town house. And it is the Presidential Suite, not the Pent House. :-) Stephanie and I were able to stay there last night and even though it was probably built in the 70s it feels more like a home than a hotel. It has 2 full bedrooms, 2 full baths, a fairly large living/dining room and a complete kitchen. It will make life so much easier for them.

Monday, June 9, 2008

Evening Update

Emily spent about an hour sitting up in the chair in her room from 6-7 PM. The faster she can move around, walk, and get her breathing capacity up, she can be moved down the hall to step-down unit and then be released for her rehab. She should be in the actual hospital for 10-14 days and then be in rehab for another 6 weeks.

While she was sitting up, she had a liquid meal of chicken broth and cherry jello and even took pictures. The doctor came by and said everything looks perfect and that she is a few hours ahead of schedule as far as her recovery goes. She continues to have great color in her face and is able to talk and communicate fairly well. There is a chance that she might get rid of some of her tubes tomorrow.

There have been a few frustrations along the way too. It is very difficult when you are told one thing by one person only to be told something completely differently by someone else. When your expectations and hopes are not met and you don't feel good, that can be discouraging. One of the biggest discouragements was that Em was told that someone would be able to stay with her in the Transplant ICU overnight and then was not allowed to. I can only imagine how difficult it is to answer questions from so many patients and get it "right" all the time but I know how information is power and giving Emily a goal or something to look forward to is helpful. She was also in a lot of pain tonight and had to wait a couple of hours before she could have anymore pain medicine. We hope that she is able to sleep tonight.

Emily's Dad, Tim arrived in time for her last visitation as well. Jason and the boys went back home to pack everything that they will need for the next 8 weeks or so. The townhouse is ready for them to occupy and will be there landing place for the duration of their stay for Jason and family while they are taking care of Emily in the hospital, and for Emily once she is released for rehab.

The goal for tomorrow is to get her up and walking!

Prayer Request

Please pray right now for Emily to SLEEP! She really needs her rest tonight as this is going into her third night of basically no sleep. Also, she is currently trying to wait for her next round of pain meds and is really anxious to get them to take the edge off. Thanks! A longer update will follow soon. ~Emily T

The Princess Chair

Emily is currently sitting up in a chair eating some of her liquid diet...at exactly 24 hours post transplant! More to follow and possibly even some pictures!

A Post from Ryan (Emily's Brother)

Its amazing that I'm just here visiting Emily for a short time but that she was called during my visit. Its just incredible to be able to be here and do what i can to help out. I'm so grateful to be here with Emily through this experience.

Transplant ICU

I made it to the hospital in just enough time to see Emily get settled into her new room. She was in some sort of post-op ICU last night and was moved to the Transplant ICU (a step up or a step down depending on how you look at it) ...which is a definite positive move. She is very alert and aware and is able to talk! She took her first breath of her new lungs around 2 AM this morning when the took out her vent and her feeding tube (I think that's what she said) all at the same time. Ouch. Our visit was brief because of the end of those visiting hours and so that she could get some rest so I didn't get a chance to ask her how it felt to breathe with her new lungs.

Her new room is quite large and has a sliding door that closes. She will hopefully be able to sleep better because of that. The other ICU was completely open with no privacy so sleep was basically impossible. She has 4 chest tubes and her nurse was installing a lidocaine pouch that automatically sends pain med to the actual incision area to take the edge off. Jason & Eric were just leaving the room and her mother Stephanie and brother Ryan and I were able to go back. Her dad gets in later today.

She has a little table fan to help keep her cool (transplant patients seem to get hot easily) and is sipping on water and ice chips. Her main concern while I was in there was that her mouth was dry and chapped so chapstick and a wet cloth were in order. She said it doesn't really hurt to swallow but that it gets kind of caught in her throat.

Before Emily was moved, she had a bronchoscopy to check her lungs. The scope found very little fluid in the lungs which is great. Stephanie commented on how amazing it is that everything is falling into place. Also, she said that the doctor mentioned that these were the best lungs post surgery that he may have ever seen! How incredible!

Another huge answer to prayer also took place this morning. Once Emily is out of ICU and the normal hospital care, she has to stay at UAB in order to complete her rehab. I believe the estimate is 8 weeks from the time of surgery until she is officially released to go home. But, the medical town homes that they are supposed to live in for the last of those weeks is very difficult to get. However, Jason went to check on them this morning and they were able to get the last one and not only that....it is the pent house two bedroom suite! How cool is that?!?! This is such a relief and encouragement and will be so helpful with Faith too.

That's the latest. The reception in the hospital is good so I will hopefully be able to provide more updates than I was expecting. I told Emily about your comments and she wanted me to read them to her but we decided it would be best after she had a chance to rest. But, I can pull up the blog in her room, so keep commenting!

Moving!

Emily did so well last night and this morning that she is being moved to the transplant floor right now!

Dear Emily,

Today is hopefully the day that you will get to take your first breath with new lungs! Oh what a wonderful joy. We are so excited, humbled, grateful, and blessed by your life. Know that we are praying for you and love you!

[Messages for Emily & Jason have been printed as of right now...at 26 messages. Please continue to write comments for them though so they can read them during the recovery process!]

Sunday, June 8, 2008

9:15 PM Update

Emily is doing awesome! The nurse says she has minimal bleeding and that she is doing really well. They may try to excabate her tonight so by morning she should be off the vent. Jason says she is looking great and that the color in her face looks good and her once blueish finger nails now look more like the normal pink that most of us are used to. He is VERY encouraged and believes she is doing wonderfully. She's very alert and aware. As she tried to communicate to Jason (she cannot talk on the vent), she was holding a clipboard in one hand and writing with the other hand and although it was a bit slow and not very neat, it was quite an accomplish for just coming out of a lung transplant surgery! Jason & Emily's friend Eric went in with him and Emily wrote, pointed, and motioned until Jason finally understood she was referring to a past card game called Wizard that they had all played. Although it was not specifically clear what she was saying, they finally figured out she was joking about something and she ended up rolling her eyes at Jason...something she does very well. Sorry Em! :-) It seems like her personality and spirit are shining through despite everything she has been through today.

Jason's parents have been able to see her today and Emily's mom arrives tonight and will be able to see her in the morning. This is possibly the last post until I am able to get to the hospital tomorrow and then find a way to update the blog. In the meantime, please be sure to post comments on the previous post so I can print them off and give them to her tomorrow. Thanks for your continued prayers! ~Emily T

Messages for Emily & Jason

Please comment on this post with any words of encouragement, prayers, verses, thoughts, etc that would be an encouragement to Emily and Jason. I am located in Nashville and decided to stay here today in order to keep the blog updated quickly but will be heading to the hospital tomorrow morning. Due to poor internet coverage in the hospital, I will print any comments on this post to give to Jason & Emily tomorrow morning before I leave. I know she will eventually get to read every comment but this will be specifically for tomorrow. No matter if you know her or not, feel free to comment as this is a great way to bless her in her recovery!

7:00 PM Update

Jason was able to visit Emily about an hour ago. The doctors are very pleased with how she is doing so far. She was somewhat responsive to him by shaking her head and squeezing his hand but was pretty much out of it which is normal. She was able to signal that she was in pain which is hard to see and hear but to be expected. As difficult as it is to see her like that with all of the tubes everywhere, things still look good. If all goes well tonight and the first part of tomorrow, they will take her off the vent and pull the tubes out. This is very important and is key to her recovery.

Jason is very encouraged and very drained. I asked if there was anything we could specifically be praying for and he said "just that Emily continues to get better." A precious statement from a loving husband that desires to see his beautiful wife heal completely from such a traumatic surgery. He will get to see her again at an 8:30 PM visitation and I will post an update after that. ~Emily T

What's Next?

Emily will be in ICU for at least the next 24 hours and possibly for up to a week or so. And she is not by any means out of the woods. Keep praying as the first few hours and days are critical to her body accepting these new lungs and learning to breathe again in a way she has not been able to in quite some time.

There is a lot of information about pre-transplant but it is harder to find information about post-transplant. A blog that Emily and I have been keeping up with since late December is a chronicled journey of a woman who has a very similar story to Emily's. Tricia has CF, gave birth to her daughter in January, and received new lungs in April. Her husband, Nate, has chronicled their journey incredibly well and includes the good, the bad, and the ugly. I've been so thankful for their story as it has given Emily and I and anyone else who reads it, a glimpse of post-transplant life. Although, Emily's situation is still unique and different, their journey could be very similar to what Emily will go through.

You can check out his blog and specifically read this post where he details the process of transplant and is a good general explanation of what Emily has been through and will continue to go through.

Surgery Complete!

Just spoke to Jason (4 PM CST) and the surgery is complete! The doctor said it went beautifully. The right lung was a bit harder to get out than the left so it took a little longer but the overall surgery was a success. He was about to get to go see her before they move her to ICU and was overjoyed at the news. He cannot begin to express how grateful he is for your prayers and support. It just simply means so much and words cannot begin to portray his gratitude.

Please praise the Lord for the success of the surgery!

Right Lung In!!!!

Just spoke to Jason (1:45 PM CST) and a nurse had just come out to give them an update. They have removed her old right lung and replaced with with the new good right lung and it went PERFECT! She is doing great overall and they are just starting on the left lung and the surgery is going really well. The decided to do the right one first because that was the worst lung...or as Jason describes it..."insanely messed up." It is the one that has collapsed numerous times and looks quite horrible on the xray. By getting the worst one out, her new lung can go ahead and start working for her while she is still in surgery. Praise God! This is such a relief and so wonderful to not only just get news during the surgery but for it to be such good news! I forgot to ask how much longer they expected it to be but I am guessing more towards the 4 O'Clock hour. I'll keep you posted. Continue to pray right now! ~Emily T

Encouraging Observation...

As we wait to hear more specific news about Emily's surgery, I thought I'd share with you a personal observation. Emily and I were able to talk on the phone last night for about 45 minutes while Jason and her brother Ryan went out for a guys night. This was all before they received the transplant call. I remember hanging up the phone and thinking how good Emily sounded! The last couple of months have been pretty difficult for her physically as she has been in more pain, been more tired, and on IV therapy. Since most of our friendship is on the phone, we've become pretty accustomed to reading each other's voices and the sometimes hidden stories behind them. For the first time in a while, I did not hear her cough, her voice was strong and encouraged, and she did not sound tired or in pain. Now, after knowing she is in surgery, I'm so grateful that she was feeling stronger than she had been and hope that this added strength will be a blessing in her surgery and in her recovery. ~Emily T

She's In Surgery!

Just spoke to Jason (8:30am central) and she is in surgery....officially. They were not informed when she actually went in and the surgery probably started between 7 & 7:30am as she has been under for about an hour or so. The entire surgery should take 6-8 hours which should put the completion time 1-4 PM. Jason is with Emily's brother Ryan and his friend Matt in the waiting room. Matt's wife Shay, just took Faith back home so she could get some rest. Jason's parents arrive at 1:45 PM and some of Emily's family will be on flights soon.

This is very exciting news but also a little daunting as the wait rolls on. Jason asked for your continued prayers and greatly appreciates your support. Please pray for the skill and wisdom of the doctors, for Emily's body to respond well, and for peace and comfort for those who wait. Please also lift up the donor's family who are more than likely grieving for their loved one at this moment. Pray that the blessing of new life for Emily would be an encouragement and blessing for them.

Lord, take care of my precious friend Emily. I know you love her more than any of us combined. Lamentations 3:22-24 Because of the LORD's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. I say to myself, "The LORD is my portion; therefore I will wait for him."~Emily T

In Pre-Op at UAB

Hi everyone. This is Emily's friend, Emily Tardy. I will be updating her blog while Emily is in the hospital.

Emily & Jason headed to Birmingham about 2 am this morning after receiving the confirmation call that things looked good for her to be a match with this set of lungs. When I talked to her, she said that one other person was being called as well but that they knew nothing about the other patient. I just spoke to Jason at 7:30 am and said that they had wheeled her back for pre-op and were doing the final testing for the lungs and should know fairly soon whether things are a go. She was this far into the process on Christmas Day so I can only imagine all that she is feeling. They received very little sleep last night and I'm sure are ready to know one way or the other. Emily's brother Ryan has been visiting them for about 2 weeks now, and Faith is with their good friends Matt & Shay. Please pray for Peace to reign as they await the final outcome. ~Emily T

Saturday, June 7, 2008

Our 5th Call

We just got a call that there might be a possible donor for me. The coordinator will call back around midnight to let us know if we need to come in or not. She said everything looks good so far and that I am high up on the list but they need to finish running some test to make sure I'm the right person. If we do go in my friend, Emily, will be updating my blog so everyone can know what's going on. We just ask for your prayers, for peace and strength to face something this big and that these lungs would be the right ones for my body. We know God is bigger then our fears and this surgery and so we just cling to Him for grace to walk through this. Thank you all for your prayers, love, and support! We will update (or Emily will) as soon as we know more.

Wednesday, June 4, 2008

Big Helper


If you were to come to our house you would see this very normal, daily routine of me doing my treatments and my little helper there to assist. It's amazing how you become very good at multi-tasking when you have children and add CF to that and you have no choice but to become a super, creative, octopus (many arms)! I took a picture of the most my two hands can do as well as remember what I'm doing and finish everything. Here I have my oxygen on (which thankfully that doesn't require hands), doing my vest (helps break down my mucus. I do twice a day), also my breathing treatment (3 or 4 times a day), as well as doing my IVs while looking at books with Faith or playing games. My little helper is always kind enough to help show me where every plug, tube, and syringe goes and I have to say she is right 95% of the time. It only becomes a real challenge when she feels mama is having all the fun and wants to take a puff of my treatment or push in the saline to my IV. I wish I could explain to her how blessed she is not to be having all this "fun". Maybe someday soon I won't have to be doing these treatments too. I've told Jason thinking about being able to breath well again or not having to do my treatments that I've done daily for 24 years is like telling a paralyzed person they can now walk. Although we pray and hope for transplant we know it is defiantly not a cure and know more or less it is trading one disease for another. We just hope the things that come with transplant are easier then what it is now. We have no new updates with transplant and thankfully for the moment I'm off IVs. Since the last call we got was at Christmas, it is just very hard to know when we might get another call. Every time the phone (which our home phone doesn't ring much since we use our cells more) rings your heart skips a beat thinking it might be the call. We continue to pray it might be this summer!
"Wait for the Lord; be strong and take heart and wait for the Lord". Psalm 27:14