Labs, Labs, and More Labs

Lately Jim has been getting enough blood drawn to open his own blood bank. He has been going downtown, with the help of his mother driving, to transplant clinic 3x/week. This is apparently suppose to decline to 2x/wk soon however I feel more comfortable with him going so often to make sure that things are going in the right direction.

So far his creatinine has stayed at 2.0 which isn't as good as it was in the hospital but they are telling us that as long as it doesn't go up anymore then they are happy. Some of his pancreatic enzymes are going up and down which takes a bit of getting used to, at least for me. Jim takes everything in stride, however I get a little worked up over these things. His dehydration has been improving and they have started him on a medication which helps him retain water, which is slightly ironic since we have been trying so hard to produce urine for the last 8 months.

His blood pressure continues to plummet every time he stands which is also fun. I told him that it he is just getting creative on coming up with reasons for not taking a walk outside. (: They have currently taken him off all blood pressure medications and are hoping that his body is just taking a little extra time to adjust to a working kidney and that this will soon even out.

All things considered he is doing really well. Apparently all of these are just small speed bumps on the transplant road. I think that I may write a book for the over-dramatic, hyper-active, over protective family member to make an experience like this a little easier for those kind of people. (I am just taking a guess that there are people out there like that-haha)

Prayer Requests: Jim's labs begin to even out, peace for the donor family, blood pressure begins to stabilize

Bible Verse: "Pray for one another, that you may be healed." James 5:16

Merry Christmas!!

Merry Christmas!! I hope this post finds you healthy happy and celebrating the Christ Child's birth!! For the first time in a long time we are all three of those things, healthy being the one in which we have struggled with. Since our dehydration on Wednesday, Jim has received another bag of fluids and is now being forced (by me) to drink more water than he can stand. Apparently the dehydration is not a sign of rejection but a sign that the kidney is actually working too well and that it is probably still in a bit of shock so we are just waiting for it to calm down. The doctors do not seem to concerned and told us that it is not typical but that it does happen so no need to worry. We have our next appointment downtown tomorrow and he will have more labs drawn and we are hoping that his creatinine is decreasing again.

We have so much to be thankful for that I can not even find the words!! First and foremost we are thankful for our Savior, who was born today, lived and was crucified so that we may have eternal life. Secondly the Lord has sent us another precious gift in the form of a double transplant, to give Jim a second chance. Thirdly, I am thankful for our family and friends who have been such a blessing to us.

Please enjoy a safe and healthy Christmas day! We will keep you in our thoughts and prayers!

Prayer Requests: Jim's labs look better with his dehydration decreasing, and everyone enjoys a safe holiday season

Bible Verse: "For unto us is born a child."

Deyhdrated?....Really?

Jim had his first post-transplant appointment this morning and overall it went well. His kidney function went backward by .1 but they are attributing that to him being slightly dehydrated. His output is surpassing his input therefore we were instructed to drink more water and less tea for a few days to see if we could improve the creatinine. Our goal is .8-1 and he was at 1.6 today.

They changed his blood pressure medication from 3 meds down to 1 and it seemed to work pretty well all day. We will see how the evening goes (Jim's BP has a tendency to become elevated in the evening). It would be pretty exciting to reduce the amount of medication he would need to control this.

No other medication changes were made today. Jim's tummy is having a little bit of a hard time managing some of the meds tonight so at his appointment on Wednesday we may get some changes. We have lab and doctor appointments frequently every week for the next 5-6 weeks. This will reduce as time passes.

We spoke with a social worker today which was enlightening in regards to insurance, medication co-pays and the like. I thank the Lord for social workers. I have no idea how they understand insurance, medicare, and co-pays. Those are the things that make me want to crawl in a hole.

I want to send out a special thank you to all the women I work with. They have been so supportive, caring, and selfless. I am very blessed to work with each and every one of you.

Prayer requests: Jim's tummy settles down, labs improve, remain illness free, and a safe happy Christmas season for all. (God Bless Us Everyone!)

Bible Verse: "Be joyful in hope, patient in affliction, faithful in prayer." Romans 12:12

Home Sweet Home

We have made it home safely! We finally arrived home around 5:30 this evening. Initially they had mentioned discharge around eleven this morning however they did not get us ready to go till about 4pm. Trying to leave downtown Dallas at 4pm on Friday is always an adventure and today was no exception. It took us a little over an hour to finally get home which pretty much wiped Jim out. We stopped at a local pizza place and picked up Jim's celebratory dinner which put him in a carbohydrate coma on the couch.

It is so nice to have Jim home! We had him get into our very tall bed before letting Millie in the door which turned out to be a great idea because Millie was so thrilled to see Jim that she ran around crazy for about 10 minutes straight. It was adorable to see how much she missed him.

Needless to say I think we are both emotionally and physically drained. It has been a jam packed week with so many wonderful experiences that I don't think that either one of us have been able to fully soak everything in.

Prayer requests: Jim continues to do well-no rejection/sickness, we get the medications correct, peace for the donor family, prayers of thanks for friends, family and neighbors!!

Bible Verse: "She will give birth to a son, and you are to give him the name Jesus, because he will save his people from their sins.” Matthew 1:21

We're Breaking Out Of This Joint!!

Tomorrow, manana, less than 24 hours from now...we will be leaving the 14th floor and going home!! Can you believe it!?!?! Because I can't!!! I can't help but singing "I'm leaving on a jet plane, don't know when I'll be back again." The plan is for us to be discharged tomorrow morning. We have follow up appointments starting next week. Who would have thought that only one week after he gets out of a life changing surgery we would be on our way to start that new life. Of course, the first 3months I will turn our house into a lockdown facility and he will feel like he is confined to our 4 little walls, but hey, you win some you lose some. I think of it as a small price to pay for trying to stay healthy for the first 3 months.

We just received our medication/transplant run down and maybe it is because we were on so many medications prior to surgery or just the fact that these feel more like "Happy" meds that we didn't really get too overwhelmed. I mean "happy" in the sense that they are for such a good reason and not such a hard one like before. We have been told that a few of these medications will be decreased in dosage or discontinued all together after awhile. Jim and I have been given a transplant diploma so to speak and are ready to graduate.

Prayer requests: We get the medications correct, a healthy next 3 months with no complications, peace for the donor family, thanksgiving for so many things going well

Bible Verse: "The LORD your God has blessed you in all the work of your hands. He has watched over your journey." Deuteronomy 2:7

NG Tube...In?...Out?...I'll Choose OUT!!!

So as you may have gathered, Jim had his NG tube removed today. Apparently many people have an increase in nausea with tube removal however I think it was making Jim so uncomfortable that he actually had a decrease in his nausea. He has a small sore where the tube was taped but other than that he looks great!!! Since the tube was removed they have graduated him to thin liquids. He tried about 5 bites of chicken broth and was full. Can you even imagine, my husband, Jim, FULL after 5 bites. I guess that is what happens after 3-4 days of not eating anything by mouth. Since the tube removal I have been seeing more and more glimpses of my husband. He is definitely beginning to feel better!! I have missed his smirk and gentle laugh!

He also received a large dose of anti-rejection meds today via IV. Apparently this is standard for 3 days post surgery. Since the medication is such a large dose he also had to receive fever medication as well as meds that assist in preventing a known virus called CMV. This virus is one you are susceptible to when in the hospital with a good immune system let alone one that is being compromised.

His blood pressure is really starting to level out. The nephrologists are playing with the medications to try and reduce the number of meds he needs in order to stabilize. Today he only received 2 blood pressure meds all day, with fairly controlled numbers. He was running slightly on the higher side but nothing that was too alarming.

Jim's stomach continues to cause some pain and discomfort with his intestinal track continuing to remain slightly lethargic. His abdomen continues to remain a little distended. Per the doctors and nurses the intestines and bowels always take a little longer to "wake up" after surgery than most other organs.

Thank you to Mike and Weita who have been such a huge support system for not just Jim but for me as well. We have been a well oiled "changing of the guard." Thank you so much for everything you do for us! We love you!

Prayer Requests: Peace for the donor family, labs continue to improve, no rejection, blood pressure remains stable

Bible Verse: "Even though I walk through the darkest valley, I will fear no evil, for you are with me; your rod and your staff, they comfort me." Psalms 23:4 (for Jim and his abdominal discomfort)

Very Important Request

One more prayer request- please keep the donor family in your prayers. They have given us a gift that merely saying thank you is not enough for. My prayer is for them to have peace and comfort knowing that they have helped save a life! Please keep them in your thoughts and prayers!

How About A Walk?

Today has been a pretty quiet day here at the hospital which in our circumstance is a good thing. Jim has gone for two short walks around the unit today so far and I'm hoping to get him up one or two more times before bedtime.

They have decreased the amount of fluid that they are infusing and have disconnected the suction through his NG tube several times. The doctors want to keep the NG tube in for the rest of today and will re=address it tomorrow for possible discontinuation. If the NG tube is removed I think that I will have a much happier and comfortable husband. He is a little "puffier" today in his abdomen secondary to his bowel being so lethargic. The doctors are going to try a couple different strategies for "waking" up his bowels this afternoon and hopefully Jim will have some discomfort eliminated.

They have allowed him to begin drinking water and it has stayed down. No other food or drink has been introduced yet at this time. His nausea has also subsided a great deal which is fantastic!

His labs and blood sugars continue to remain stable. His creatinine has decreased to 2.6 today which is down from yesterday. His blood sugars have been anywhere from 115-140 which are normal. He is continuing to receive breathing treatments which are helping him cough up some very colorful substances (thank goodness I work in healthcare and I like colorful substances). His blood pressure is beginning to come down as well with a new regimen of medications. I know that I may be a little bias since I work for Baylor but I have to give them credit, they have taken my input with different medications and timing of them to help lower his blood pressure. It really helps you not feel so helpless when they listen.

I ask for prayers for Jim that he will feel the Lord's presence and your love throughout this process. I think that the feeling ill is starting to damper his spirits. He has endured so many things over the last 2 years that I think he is getting to point that he just wants to feel better. This day is soon approaching however to him I think it feels as though it is moving in slow motion. Jim has been such a solid model of endurance and strength that I don't want him to become discouraged or frustrated with his progress.

Prayers Requests: strength, blood pressure continues to remain normal, bowels wake up, and swelling decreases

Bible Verse: “The LORD is my strength and my defense ; he has become my salvation. He is my God, and I will praise him, my father’s God, and I will exalt him." Exodus 15:2

Ready Or Not Here We Go!

Jim was moved out of the ICU and up to the transplant floor today. He had three IV's pulled and oxygen discontinued which is helping him feel less like a pin cushion and more like a human being. He continues to have an IV in his neck and an NG tube (tube going in his nose and down into his stomach). This tube is the culprit of significant discomfort and has quickly turned into Jim's nemesis. Jim has an easily provoked gag reflex therefore any movement or speaking makes him gag or vomit. Needless to say it is very uncomfortable and I think he is losing his patience with it!! Another source of discomfort would be the constant nausea he is experiencing. Due to the surgery it has slowed his bowels down considerably so he is experiencing significant nausea. These both were doing a little better this morning but after all the commotion of moving up here and changing beds they both came back with a vengeance.

Regarding his numbers and labs: his creatinine level (kidney number that was 7.1 on admission-very bad) is consistently dropping and this morning was down to 3.3!! Normal is 1. They have decreased his finger sticks to every 4 hours instead of every 2 since his sugar is remaining stable. These are both wonderful signs of properly working and accepted organs.

Although the above labs are wonderful we are having some difficulty with Jim's blood pressure behaving itself. I spoke with the nephrologist today who is monitoring it and he would like to slowly introduce the medications to try and find something that works without over doing it. I like the idea for the hope of reducing the number of medications he has to be one but I hate seeing him get a headache and not feel well. I know these are all bumps in the road and that they will be remedied in time, but, knowing me and my patience motto (fast food should be fast!) I do not handle waiting well.

All of these above areas of discomfort are temporary and small in the grand scheme of things. He is very blessed to be progressing this quickly. So on one of the many positive notes we are consistently amazed and overwhelmed by the support we have in all of you and in the Lord! We can not thank you enough for your prayers. Nationwide prayers are being sent up to the Lord and I know He is protecting and blessing Jim daily.

Prayer Requests: Creatinine level continues to drop, nausea decreases, blood pressure begins to level out, NG tube comes out soon give Kris patience.

Bible Verse: "being strengthened with all power according to his glorious might so that you may have great endurance and patience" Colossians 1:11 (for Kris)

"Therefore, as God’s chosen people, holy and dearly loved, clothe yourselves with compassion, kindness, humility, gentleness and patience." Colossians 3:12 (for Kris)

"Then Jesus said to him, “Get up! Pick up your mat and walk.” ⁹ At once the man was cured; he picked up his mat and walked" John 5:8 (for Jim)

You Can't Rush A Miracle

This is the exact statement Jim made on Wednesday night, and although WE can not rush a miracle, the Lord can. On Thursday morning Jim and I received a phone call from Baylor with a possible kidney pancreas transplant. Jim answered a scripted set of questions and we waited for a return phone call. The second phone call came an hour later after which we packed a bag and ran out the door. We arrived and were checked in by 10 at Baylor Dallas. We were placed in a room on the transplant floor and within 10 minutes of entering we were surrounded by a flurry of white coats taking labs, x-rays, and history. The tornado of white lasted about an hour and then we began to wait...

...and wait

...and wait.

Around 4:45pm they took us to the pre-op room which we thought meant that the last test came back positive, however this was not the case. The organs were not even in the hospital yet so we again began to

...wait
...and wait.

At 6 the surgeon arrived with the organs and the last test was completed. At 630pm they wheeled Jim off into surgery. The surgery began at 630pm and ended a little after 1AM. Secondary to being surrounded by family and friends the next bout of waiting was full of stories, laughter (to calm the nerves) and candy. I can not thank everyone enough for staying with me and Jim's parents during this waiting period- you truly were my little miracle that night.

Around 120AM or so the surgeon came out and spoke with us about the surgery reporting that there were no complications during the procedure. He was transported up to the ICU and we soon followed up to the waiting room. We were able to see Jim at about 230AM. He was still under quite a bit of anesthesia therefore he didn't speak much. When I checked on him at 5AM he was sleeping soundly. Around 830AM he was able to speak however was gagging and vomiting often secondary to the NG tube. Jim has a very hyper-active gag reflex therefore he has had a really hard time with tolerating the tube. The nurses are wonderful and are trying to manage his pain and nausea.

Today he has continued to improve and his labs are holding strong. His sugar levels have been staying around 102-120 which is perfect! He is urinating well and has a catheter in his bladder to avoid stress on the new kidney. He hasn't been able to eat or drink anything yet and has been just receiving fluids through an IV all day. They have mentioned moving him to the floor tomorrow however this is dependent upon how his blood pressure behaves. It has begun creeping back up and so they are closely monitoring this as well.

Sorry for lack of creativity, I am really tired. I do want to say a big thank you to all that came out yesterday and supported Jim and I. You truly are amazing people!! I am constantly amazed at how the Lord works and how He has intricately laid out His plan for Jim in this whole process.

Also thank you to Betsy who has been my ICU waiting room pull out chair neighbor for the past two nights. You ARE the definition of friend!!

Prayer Requests: Jim's tests continue to be positive and his nausea subsides.

Bible Verse: Hebrews 12:28 "Therefore, since we are receiving a kingdom that cannot be shaken, let us be thankful, and so worship God acceptably with reverence and awe."

Santa...I have one wish for Christmas.

I say one wish but it is realistically more like two or three.

First wish- Jim gets his transplant soon and he comes out healthy!
Second wish- If first wish doesn't come true quickly, then default to second wish, with wish being that Jim stays feeling decent through the holiday season.
Third wish- A wish for all my love to be carried to Minnesota this Christmas season since Jim and I can't be there in person!!

I hope my above wish list finds you all happy, healthy, and uncomfortably full from a joyous Thanksgiving. My parents were able to come down and spend a week with Jim and I so we were blessed beyond measure. I'm sure Jim secretly wishes that I took after my father in the kitchen, but sadly this is not so. (sorry Jim) We spent Thanksgiving day at our house with my parents and Jim's parents, with us all eating enough for 12 people. On Saturday we went up to Jim's parents home in Denison and had a large family get together... guns, pit bulls, and brisket... I reckon we initiated my parents into a Texas Thanksgiving properly!

Jim continues to feel decent. He is showing a little more fatigue lately, as such, he has decreased his work schedule down to 3 days a week instead of 4. It was not worth running his body down for one more day of work. Keeping himself healthy is now his other part time job! He has begun to have a few days of nausea here and there which we don't really know if it is related to his kidney failure or if he is fighting off a bug so we are trying to keep a log of those days. Jim's blood pressure is beginning to behave itself although it likes to throw us for a loop as soon as we get a little too comfortable. It is a constant battle that I plan on winning!

Although Jim is currently feeling alright, we have decided to not make the trip to MN this year for Christmas to see my family. There are many many "what if's" that could happen and right now we are not gambling people. As Jim likes to tell me "stay the course Kris." Well, we are going to do just that and stay home for Christmas. I will be eternally grateful to the inventors of Skype as this will be my first Christmas away from my family.

Prayer requests: Jim gets a successful transplant soon and comes out healthy. Everyone has a safe and happy Christmas season! Prayer of thanksgiving for our families! (we are truly blessed!!)

Bible verse: "But seek first His kingdom and His righteousness, and all these things will be given to you...therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Matthew 6:33&34

Not so good... but....not so bad

Jim and I went to the nephrologist today and we were given a time line for dialysis. His labs showed a creatinine level of 7.1 which is the highest he has ever been. With this level she thinks that his kidney function is roughly around 9%. The doctor quess-timated a dialysis start date of February. We have a scheduled appointment with the nephrologist toward the end of December and with a tentative port placement in January. The port has to be placed for 2 weeks to a month before we can use it. All of this news does not come as a surprise, it comes as more of a gut check. I think that we always knew that dialysis was something that was going to happen however getting a date makes it all seem a little more real.

Jim's other levels were average. His potassium and phosphorus were normal to high. We will probably increase his "food" pill after the holidays. The cardboard diet that Jim is partaking in is working well enough to maintain his potassium level so that was reaffirming news. Jim's A1C level (sugar history) was a little higher than it has been so we will continue to be diligent about his sugars.

The doctor scared us a little by asking us about which hospital we are planning on going to if Jim starts to feel poorly. We are going to request prayers for Jim to feel good through the holidays. Last Christmas Jim had pneumonia, two years ago he was swollen and just beginning this kidney failure journey, so we would love to have a relatively healthy Christmas.

We had a slight scare this weekend with Jim's blood pressure soaring into numbers that resemble more of a basketball game score than blood pressure so today we made some changes to his medicine. I am hoping that this new medicine will help return his numbers to normal, otherwise I will soon be taking these medications to control my blood pressure.

Along with all of these numbers we also found out that Jim's blood type is AB+ ( sorry this took so long to get Kendra). This is good news because AB+ is the universal acceptor as far as blood type goes. Hopefully this will help speed up the wait!!

Prayer Requests: Jim makes it through the holiday season feeling good and we can push dialysis to February. That the new blood pressure medication helps even out his numbers.

Bible Verse: "Your ways, O God are holy. What god is so great as our God? You are the God who performs miracles." Psalm 77:13-14

I'm All In!

The Poker tournament was this last Saturday night and it was such a blast!! Heather and Jared did a wonderful job hosting and I think everyone involved had fun! We can not thank them and everyone who came to support us enough! Sometimes I feel like a broken record but I can't say enough how blessed we are to have so many amazing people in our lives!

On the transplant front, we are still waiting patiently by our cell phones. They no longer give you pagers to carry around since we have grown into the "phone must be attached to my body at all times" era. I spoke with our case manager and she reports that we are still on the list and that I don't need to check in monthly, even though I really want to.

We have received the blood draw kits today that Jim needs to be doing monthly so he will go and take care of that tomorrow. It was by dumb luck that somewhere along the line I remembered them mentioning monthly blood draws, so I called the coordinator and she replied "oh, right...you aren't doing those...you need to do them." Sometimes I think that I need to carry a tape recorder with me everywhere so I can play conversations to make sure that I didn't miss anything. Hopefully the fact that we missed October's blood draw does not set Jim back.

Jim has a check up nephrology appointment next week so he will get the blood drawn for that appointment tomorrow as well. (if he wasn't anemic before he will be by the time he is done)

Prayer Requests: Jim continues to feel well. Prayers of thanks for such amazing support and friendship

Bible Verse: "Know that the Lord is God. It is he who made us, and we are His; we are His people, the sheep of His pasture." Psalm 100:3

Place Your Bets!

We are so blessed to be having another fundraiser. This one is put on by our dear friends Heather and Jared Anderson! They have arranged a poker tournament at their house on Saturday night, November 6! There are going to be prizes for both players and observers. If you would like to come please let myself or Heather know, we would love to see you there!

Hurry Up and WAIT...

As the title says perfectly, we are waiting, patiently.

We have officially been listed for a little over a month but haven't received any calls yet. For educational purposes I will explain the waiting/ transplant process to the best of my ability(which is limited). Being listed means you get placed on a national list, UNOS, and all of your information is placed in this file. There is no order to this list, at least from what I understand. When an organ becomes available the powers that be go to this list and whoever is the highest match in all of the qualifying categories will get the organ. This means that if an organ is available in Conneticut and Jim is the closest match they will fly the organ here for him. With every organ two people will get called to the hospital. These two people are the ones that are the closest match to the organ. When you arrive they draw blood and do one last cross match between the organ tissue and the recipients' blood. It is possible that with this last crossmatch automatic rejection can occur, disqualifying the 1st recipient and thus moving onto the 2nd recipient and their crossmatch. This is why they always call two people to the hospital, in case the final crossmatch comes out positive (meaning rejection) for the 1st. We were told that you may be called to the hospital several times for this process before you will receive your organ.

During the entire pre-transplant process were were never really quoted a specific time period other than "it is much short than the kidney transplant waiting list." Apparently the wait time for just a kidney alone is 18-24 months and the pancreas kidney list is less than half of this wait time. Jim looked up the approximate wait time through Baylor's website and he found 4-6 months. I anticipate 6-9 months, but the shorter the better!!!!

Jim continues to feel better than we think he should which is a blessing! Our next nephrology appointment is in November and is quickly approaching. We hope that his labs for the appointment will show that his kidneys are holding and we can continue to push back dialysis. From what the nephrologist told us last time, we can hopefully keep pushing it off as long as he feels half way decent. He is still working 4 days a week at the hospital and although it is not the position he longs to hold for the future it is great experience and we are grateful he feels good enough to work.

The wine tasting was a huge success and we want to thank everyone who was able to attend or those who contributed online. We are TRULY BLESSED to have such a great support system of family and friends. We especially want to thank Betsy who went above and beyond the call of being a friend and organized a heart touching, support filled evening that we will never forget! Jim was embraced in love that night!

Prayer Requests: Jim continues to feel good. Jim will receive his transplant soon.

Bible Verse: "Therefore I tell you, do not worry about your life...but seek his kingdom, and his righteousness, and all these things will be given to you." Matthew 6: 25 & 33

Let the wine tasting begin!

So we are getting down to the wire with last minute details for our first fundraiser on Sunday. I think Betsy and I are managing to get all of our loose ends tied up and we should be able to put on a fun night for everyone! I want this night to be in part, a way to celebrate everyone that has helped us along the way as well as a great night for Jim. I am just getting so excited to see everyone come out and support him! Truly we have been so blessed with such amazing family and friends!!! The love Jim is going to feel in that room is going to be overwhelming, and I could not be happier about it. He is such an amazing man and he has been through so much already that being surrounded by support and love is exactly what he deserves!

Thank you to everyone who is keeping us in their prayers. Thank you to everyone who is coming on Sunday. Thank you to everyone who has donated, and thank you everyone for loving Jim and I!!

Prayer Requests: Everyone on Sunday has a wonderful night! Jim continues to feel well.

Bible Verse: "Let us rejoice and be glad and give Him glory." Revelation 19:7

Can't Believe It...No Shot!!

Jim went to the nephrologist today and his red blood cell count was 11.9! This in itself is great news, since it meant that Jim did not need to get a procrit shot today (normal is 12). Jim has not had a red blood cell count this high since before we started this whole process. Although this is great news in itself it doesn't help with explaining why he is soooo tired, fatigue must just be par for the course!

While Jim was at the nephrologist he spoke with her about the "crazy" muscle cramps that he keeps getting struck down with, especially in his hands. Since we have been working out Jim keeps getting inflicted with these horrible muscle cramps. The nephrologist thinks that we are adhering to his potassium restriction diet so closely that when he works out he ultimately begins cramping because of the lack of potassium. Now, I have to say that I am very proud of the fact that Jim is getting cramps because this means that we have successfully followed directions! Now, that may sound insensitive and trust me I am not happy that out of the blue Jim loses the ability to have opposable thumbs, but I am happy that we listen so well. (Having friends who are dietitians helps!)

We have had some sugar scares lately which normally wouldn't be all to abnormal however they seem to be dropping quicker than usual. This past weekend Jim's sugar crashed while we were out which normally does not happen so needless to say I was a little scared when I had to struggle with him to open his mouth to eat something. Jim is soon to schedule an appointment with his endocrinologist to talk about these crashes. I personally would love to have something sharp that I can drive into his thigh to help raise his levels back into the normal range so getting him to eat when he is that low isn't a concern anymore (yet again, sounds insensitive but meant in the most loving way possible).

Prayer Requests: Increase in energy level and decrease in muscle cramps

Bible Verse: "There is a time for everything, and a season for every activity under heaven. " Ecclesiastes 3:1

Again?!

I'm starting to think that someone only wants Jim to get one organ. We received a letter confirming Jim's placement onto the Baylor transplant lists for both Fort Worth and Dallas but yet again they only say Kidney list not pancreas kidney list. So after making several phone calls they clarified on UNOS that no, Jim is on the Kidney Pancreas list, I'm not sure why this is so hard. This is probably the 3rd time I have had to clarify which list Jim is on because of misleading paperwork. I think that when he actually gets called in for surgery I am going to take a permanent marker to his belly and draw the organs on for them and say "TWO ORGANS PLEASE OR NO CUT!!" I think that would be pretty straight forward (:

Other than that, no big changes which is a good thing! Jim continues to stay feeling pretty well overall and we are thankful for that.

Prayer requests: The Lord grants Jim continued good spirits.

Bible Verse: "My soul finds rest in God alone; my salvation comes from Him. He alone is my rock, and my salvation; he is my fortress, I will never be shaken." Psalms 62:1&2

Fundraiser

Let the countdown begin. We are almost 2 weeks to our first fundraiser for Jim! We are getting really excited to see so many of our friends and family. We can not thank everyone enough for supporting us!

If you haven't sent your money in please send it to either Betsy or I so we can get you your tickets. We are trying to get a head count so that we know how much food to get.

The link for the fundraiser is above at the top of the blog, please feel free to invite anyone and everyone!! I just want Jim to be surrounded by people that love him!!

Prayer Requests: Betsy and I can pull everything off in 2 weeks, Jim continues to feel ok.

Bible Verse: "And we rejoice in the hope of the glory of God." Romans 5:2

YAY!!!!!!!!!!!!!!!!!

So we have made it to the halfway point of this long process! We are ON THE LIST!!!!! After some phone calls to the insurance we received the news today and couldn't be more excited. Of course I immediately start packing a hospital bag, writing instructions for our dog, and adding up my PTO while Jim pleasantly smiles and lets me be neurotic without saying a word. (oh, I love this man!) The waiting list itself for a pancreas/kidney is approximately 6-9 months so we will just keep our prayers steady for the sooner the better.

We visited Jim's nephrologist (kidney doctor) today and she is ok with us holding off on dialysis a bit longer. We have another appointment in 2 months and will re-visit it then but for now he is in the clear. Jim received another procrit shot to help boost his red blood cell count for his anemia. We always know when he is getting low again because he starts sleeping like a teenager. Jim's blood pressure was a little high again today so we have to keep on eye on it and let her know if it is behaving or not.

Prayer Requests: Blood pressure starts cooperating and comes down a bit, transplant happens quickly and peace for the organ donating family

Bible Verse: "This is the day the Lord has made, let us rejoice and be glad in it." Psalms 118:24

I'll take 6.0 anytime!

Lab results came back today from his 24 hour test and his creatinine is at 6.0 so the doctor feels good about waiting till our appointment in a week and a half to talk about port placement. If I understand this correctly, we are in the clear for another week and a half before any scheduled or emergency surgery has to take place!! YAY! The LORD is good! It might seem like a small thing, but a week and a half feels like a really long vacation when I don't have to think about lab results.

Prayer Requests: Kidneys continue to hold and we can leisurely schedule port placement without having to worry about emergency surgery. Jim continues to feel good, and remains relatively symptom free

Bible Verse: II Chronicles 7:3 "He is good and His love endures forever."

Fundraiser

The link above is for our 1st fundraiser dinner/wine tasting. When you click on the link it will take you to Jim's home page for the foundation. On the left side in MY FLYERS you can click on the "WINE TASTING, DINNER, SILENT AUCTION" for more details. Hope to see you all there!

We are SO confused

It turns out that the urgency that was created on Wednesday with making sure we started this 24 hour lab was not really urgent at all. Jim completed the 24 hour lab, dropped it off at the facility, just to find out that we will not receive the results until Tuesday. When we spoke with the nephrologist's nurse she reported that the doctor did not seem real concerned and was fine with us speaking with her on Tuesday about the next step. So...with that being said, we are not in the hospital this weekend- YAY!! However we are slightly confused by the urgency, that turned out to not be urgency.

Again we are blessed with one more weekend without dialysis and a hospital stay!

Prayer Requests: The Tuesday lab results are stable and Jim is allowed to continue on a non-urgent dialysis path.

Bible Verse: "Surely goodness and love will follow me all the days of my life, and I will dwell in the house of the Lord forever. " Psalms 23:6

That Stung A Little

Although we knew it was just a matter of time before we would get these results it still stings a bit to hear the numbers over the phone. As you may have gathered, not such great news from his labs today. Jim's creatinine level is up to 6.2 which is the highest it has ever been so we are now having to do a 24 hour test starting tomorrow morning and ending Friday morning. We call and get the results on Friday afternoon. This 24 hour test does not allow Jim to work so he will have to take off tomorrow and maybe the rest of the week depending on results. Pending what the labs look like we may need to be admitted to the hospital for emergency port placement and dialysis. This is definitely not the direction we were hoping to go this quickly.

On a side bar...

If I may just brag on my husband a little I would like everyone to know what a wonderful man he is.(especially those who have never met him) He never ceases to amaze me with his dedication and determination to win all of our struggles. He carries this cross with such integrity and silence that I am in constant awe. I am unsure if I would be able to find the strength to work if I were in kidney failure, and yet he finds such joy in helping his patients that I am humbled and I see myself wanting to emulate his compassion and love for others.
Sorry for the soap box, but I just sometimes feel that I get so caught up in reporting lab results and surgery outcomes that I forget to talk about what a truly remarkable man Jim is. This is just a small part of why I thank the Lord everyday for giving me my husband.

Prayer requests: 24 hour results are stable and we do not have to get admitted. That the Lord gives us strength and peace as we muddle our way through this next hurdle.

Bible Verse: I Chronicles 16:11 "Look to the Lord and His strength; seek His face always."

Not a fan

Jim had an appointment with the dialysis surgeon today and they are suggesting to place both the port for PD dialysis (in his belly) and a fistula in his wrist. Jim is not a fan of this idea. Unfortunately he does not have much of a choice, considering the surgeon made a really good argument. His argument was that when Jim gets his transplant they are going to wear out his veins and arteries with blood draws and we may end up losing an access that he could need down the road. This is a very good point, one that neither one of us had ever really considered, so with that being said it looks like Jim will be getting both placed, a fact that he is not very thrilled about. We have to talk with the nephrologist and start setting up our classes to learn how to work all of this dialysis business and also ask her when she would like us to schedule the surgery for the port placement. We are planning on trying to ask her this tomorrow when we call for our lab results however not sure if we will get all of these questions answered tomorrow or not.

Jim will be getting stat labs pulled again tomorrow to make sure his kidneys are still holding after the angiogram last week. His blood pressure is very slowly coming down which is something we are pleased with. He still has an appetite and his swelling is reducing as well so these are good things.

Prayer requests: Blood work comes back reporting that his kidneys are holding. Jim finds peace with having these ports placed.

Bible Verse: "Your love, O Lord reaches to the heavens, your faithfulness to the skies." Psalm 36:5

And the answer is.... they loved him!!!

YEA!! Step 1 of the pre-approval process completed, Jim was accepted by the transplant committee and now his paperwork is getting shipped to Baylor!! After the hospital receives his information they will send it off to the insurance for pre-certification. This pre-cert period can last anywhere from 1-6 weeks, ugh...let's hope for one!!! After Baylor receives the certification from our insurance we will receive a letter via snail mail and then Jim will be officially listed. I am starting to see a light at the end of this very long tunnel! (:

Prayer requests: Pre-cert process takes a short amount of time to approve Jim for listing. That Jim's kidneys are still holding for his Wednesday labs.

Bible Verse: "This is the day the Lord has made, let us rejoice and be glad in it." Psalms 118:24

Hospital...not this weekend!!

Jim had his labs pulled again yesterday and they are holding. They were not as good as Monday with a creatinine level of 5.5 but stable enough she didn't want to admit us! Praise the Lord! I don't think she believes it herself because she wants him to get more labs next Wednesday. So, continued prayers for holding kidneys would be very much appreciated.

Although currently Jim's kidneys are trying to behave themselves, Jim's blood pressure is being a little bratty. Since the surgery on Monday it has decided that it no longer wants to stay in the 120/80 range. We spoke with the nephrologist yesterday and she wants us to just keep an eye on it and let her know what it is doing next week.She didn't seemed surprised by it's bad behavior. From what I understand the further down his kidneys go the more problems we will have with his blood pressure. This being said, Jim and I still do not appreciate any bad behavior from any of his organs or inner workings! If only I could do behavior modification on blood pressure- we would be back in line in no time. (:

Next week we have the last of his dental appointments, appointment with the dialysis surgeon, and more labs. Hopefully we will also find out if we were approved for the list by Monday afternoon. Based on Jim's tests results he should have been approved, but my faith in the paperwork system is a little lacking so I am trying to be optimistic that the correct forms made it into their hands!

Prayer Requests: Kidneys continue to hold for next weeks labs. We get approved for the list! Jim's blood pressure begins behaving itself!

Bible Verse: "The Lord is my strength and my shield; my heart trusts in Him and I am helped." Psalms 28:7

up, down, who knows!

Well, we received good news, however slightly confusing at the same time. What I mean is Jim's creatinine number was lower today than it was on Monday which equals that his kidneys improved. On Monday his number was 6.1 which means that his kidneys had declined even from 1 week prior when it was 5.59. Today his number was 5.1- who knows?! I think the Lord just likes to keep us guessing! Whatever the reason- I will take 5.1 any day!!!

Other news...drum roll please...All of Jim's information is being sent to committee on Friday and we should know something on Monday- meaning hopefully Jim will officially be on the pancreas kidney list as of Monday!!!

Prayer Requests: Friday's labs are as good as today's. Committee loves Jim and says "OF COURSE WE WILL APPROVE HIM"

Bible Verse: "Therefore I will praise you, O Lord, among the nations; I will sing praises to your name." 2 Samuel 22:50

lub dub, lub dub...

Lub dub, lub dub is the sound that a heart makes, so we thought it only appropriate to speak the language of our visit to Baylor today. After a 3:45AM wake up call, Jim and I were both impressed that we somehow found our check in point without much distress. (arriving 15 minutes ahead of schedule- that is impressive knowing Jim in the morning) After labs, EKG, and vitals were taken, we hurried up and waited. The surgeons were running on schedule so he was taken into surgery around 8:45AM. The surgeon came and spoke to Darrin and I in the waiting room and said that everything went GREAT and that he already wrote the letter to the transplant committee clearing Jim's heart for a transplant!!!!! The LORD was answering prayers today in Dallas TX!

Now, Jim is resting and we are trying to get his blood pressure under control before we are discharged to go home today. He is in good spirits even after turning into a Man-O-Lantern from getting his EKG stickers removed.

Jim will have follow up labs both on Wed and Fri and based upon the numbers we will see whether we have to get admitted for an emergency port. We are praying and hoping that his little kidneys will hold and we can proceed with dialysis as planned down the road.

I can not thank our friends and family enough! We are truly blessed to be surrounded by such a great support system. Thank you all so very much for your thoughts and prayers!

Prayer Request: One of thanksgiving...for friends, family, and for his positive test results today!

Verse: "I thank my God through Jesus Christ for you ..." Romans 1:8

Marshmallow Man

It is official, Jim is slowing increasing in size, I can't help but feel for him. We had to stop some of his medicines and start different ones in preparation for his cardiac cath this week and the poor guy is swelling. Last night we could barely get his wedding ring off! Luckily, these medication changes are short lived and we will be back to our normal regimen by mid-week so he can get back to feeling better hopefully. Please keep Jim in your thoughts and prayers this week as he has this procedure and we pray that his kidneys pull through so no emergency port has to be placed.

Prayers: Cardiac cath goes well and that Jim's kidneys hold strong! That we both have peace knowing that we are in the Lords hands

Verse: "Never will I leave you; never will I forsake you...The Lord is my helperl I will not be afraid." Hebrews 13:5 &6

ADHD is not just for kids

Jim and I had a nephrology (kidney doc) appointment today and it went alright. Our nephrologist, is a great physician, however she talks so fast that it takes two of us to follow her train of thought. I can only hope on a good day to process information half as quickly as she does. Knowing Jim, and his general speed in life, the two in the same room is quite comical...picture the tortoise and then picture the hare with a stethoscope.
After asking her to repeat herself several times I think that we pieced together the plan for the next week or two. She wasn't extremely pleased with the fact that we have a cardio-angiogram scheduled without having a dialysis port in place, so we had to be creative in trying to work around her asking us to push the angiogram back. The plan is this, angiogram next week, STAT labs on Wed- call for results, STAT labs on Fri-call for results, and pending upon what the numbers are saying and/or how Jim is feeling we possibly get admitted for a emergency port to be placed and Jim begins dialysis. She has Jim coming off of some medications this weekend and going on a couple others to try and protect his kidneys the best we can prior to and after the angiogram. The best scenario is his kidneys pull through enough to not be admitted and we continue on with appointments for peritoneal port placement and begin as needed. Worst case scenario Jim's kidneys bite it with this angiogram and he starts having symptoms, we get admitted, and he begins dialysis in the next 2 weeks. This would mean he would have to do hemo-dialysis for a short period of time prior to getting his placement for peritoneal dialysis.

Great things we learned from this appointment- The cardboard diet that Jim is on is working, his potassium and phosphorus levels were within normal range. This may not sound like a great thing however Jim has been working really hard to stay within the recommended diet restrictions and it is paying off. No extra medications were added to his regimen to correct these levels. Second great thing-kidneys only dropped a small amount to 12%!

Prayers: Angiogram goes well and his heart is cleared so he can be placed on the PK transplant list. Kidneys hold their own or only take a small hit from the angiogram and no emergency port is needed.

Verse: "Trust in the Lord, the Lord, is the Rock eternal." Isaiah 26:4

Dentists should offer complimentary bibs

I think this because when I called Jim today at lunch it sounded like he had just stuffed about 12 tator tots in his mouth at once and was trying to talk. As you may have guessed Jim has completed one more appointment at the dentists and we have one more to go to get things squared away for the transplant. It is not required that he have all his dental work completed prior to being listed however it is strongly recommended so if it will give us a running start on something we will do it!

He also had his labs pulled today for our nephrology (kidney doctor) appointment next week. We are hoping and praying that his kidneys are holding at 13% . We plan to speak with her about dialysis and the ever nearing angiogram appointment. As I have mentioned before it is very likely that the angiogram will push his kidneys over the edge so we are trying to be pro-active on any dialysis catheter that we have to get placed so it doesn't become an emergency surgery after the angiogram. (As you may or may not know, I tend to be a planner and a little over controlling when it comes to Jim's health-hehe)

Prayers: Jim's kidneys are holding at 13%. Peace for Jim and I for the upcoming angiogram.

Verse: "He will call upon me and I will answer him; I will be with him in trouble." Psalms 91:5

Finally...a quiet week!

This is the first week that Jim and I have not had any appointments, so things have been pretty quiet on the transplant front. I honestly can not remember the last time we had a week without cardiology, nephrology, or some other kind of "ology"appointment.

Since I have no updates on any appointments I thought I would take this week to write about the foundation that we are connected with for fundraising. It was a strange idea to me to fundraise for organs but after learning about all of the expenses I started to understand. We have good insurance however we will still be responsible for a large portion of the initial surgery and will have a lifetime of anti-rejection medications... so there is no time like the present for raising money. During the meeting with our social worker it was highly recommended to us to become affiliated with a foundation to help us with fundraising so we, with the help of my sister Kirsten, researched several of the organizations out there. We decided upon NTAF, a foundation that has been around helping transplant recipients for years. With this foundation we have created an account that is under Jim's name for people to contribute to help us with medical and medication expenses. Any money that is donated is tax deductible and will go straight to Jim. We are only allowed to utilize the money for transplant related expenses. We are also going to hopefully hold a couple of fundraising events which I will keep everyone posted on. These events are only in their infant stages however we are looking into a silent/dinner auction for one and a sand volleyball tournament for another. We have been very blessed to have family and friends helping us plan these events so that we can concentrate on our appointments.

So, we would love for you to check out his fundraising page at ntafund.org
Go to find a patient and put in Jim Boren.
It should take you to his page. Please feel free to email it on to anyone you think may be interested in contributing.

Prayer requests: Prayers of thanks for all of our family and friends! Prayers that Jims' angiogram goes well and no further tests will be needed.

What?...Jim's a type I diabetic...Who knew?

It's official Jim is a Type I diabetic.

Crazy enough we have been waiting on labs to prove that Jim is Type I instead of Type II in order to schedule his cardiac catherization. This confirmation and procedure are needed because Baylor recently changed the pancreas kidney transplant policy to include a cardiac cath (angiogram) prior to being approved for a pancreas. If Jim were to just get a kidney, this procedure would not be needed. So, today we finally received this confirmation, reporting that he had the correct amount of C-Peptide in his blood for being a Type I. So, now that the cat is out of the bag and Jim is officially Type I (this sentence is loaded with sarcasm) we have scheduled his cardiac cath for mid-late August. Hopefully, according to our case manager this will be the last procedure Jim will have before he is reviewed before the transplant committee to be approved for the list.

Prayer requests: Angiogram goes well and no further testing or procedures will be needed.

"May your unfailing love be my comfort." Psalms 119

Why are you always cold?

Well, Jim went yesterday and was able to get another Procrit shot which helps with his anemia. Since Jim has been in kidney failure he has become pretty anemic, which doesn't help him endure the temperature that I like to keep the house. He would keep it at 85 in here everyday however I think that I would go into early menopause if our house was that hot. When he was at the nephrologist they took his blood pressure and it was back down so we are just going to chalk Monday's crazy spike up to the little Russian surgeon stressing him out. :)

Just a bit of a fireside chat with a little russian man

Who knew that finding a vet to take a walk in appointment was so hard?!? After 2 different stops this morning I finally found a vet to see our sick pup. Turns out that rolling in cow poo is not good for one's digestive tract. After our little excursion of x-rays, shots, and poo screens (for the dog)- I was able to get our puppy feeling a little better in order to run downtown to meet Jim for his appointments.

By the time I met up with Jim, his labs were already drawn and we were off to meet the transplant surgeon. The surgeon turned out to be a dry humored little Russian man who made us both smile. He was able to answer a lot of our questions and after we got over the initial hump of him not knowing that we needed a pancreas as well as a kidney we ended up feeling pretty good about the appointment. (I have this fear that after all of this Jim will go into surgery for 2 organs and only come out with 1 new one- that would be a BAD day)

The cardiology appointment went well with an ECHO showing Jim's heart in good condition. Apparently his heart and its valves looked good with no abnormal thickening. After these labs are completed then we will get his cardiac catheter procedure scheduled. We are keeping an eye on Jim's blood pressure because it was running a little high today however this isn't anything new for us. I think after we are done with all of this, Jim and I will be qualified to be either cardiologists or nephrologists (: --we should be able to take our pick.

Overall, it was a good day in the Boren pre-transplant world! Thank you for all the prayers!

Jeremiah 29:11, "For I know the plans I have for you, declares the Lord. Plans to prosper you and not to harm you. Plans to give you hope and a future."

Kris

So I thought that I would start blogging about our adventures on Jim's transplant road. This is a road of never ending appointments, unexpected testing, and unplanned challenges. And although this road is all of these things, there is a hope that at the end Jim will come out healthy.

As many of you may know, Jim is going through the pre-transplant medical process for a pancreas and a kidney. If he qualifies this would mean that Jim could live for many years without diabetes. It also means that he will be on a lifetime of anti-rejection medications, however this is nothing new since he is insulin dependent now. We have completed approximately 75% of the testing and are hoping to get listed sometime in September. This upcoming Monday, July 26 we have a cardiology appointment, get to meet our surgeon, and have more labs drawn. This cardiology appointment will involve an ECHO as well as stress test. We pray that these both come back with positive results and we can continue walking down our road without any more complications.

I will keep you posted on our results and any stops we have to make along the way.

"Thy Word is a lamp unto my feet, and a light unto my path." Psalms