Meeting with Transplant Team

So, here is a rundown of what took place on our trip to Nashville.

Our first appointment of the morning was scheduled for 7:15 A.M in the Transplant Center.  We met with Pre-Transplant RN, along with two other couples meeting with the transplant team that day, who provided us with a package of informational material and spoke briefly about what to expect throughout that day.

INFORMATION PACKAGE
The informational package provided included the following information:

• Talking About Transplantation - Living Donation: Information you need to know, United Network for Organ Sharing
• Talking About Transplantation - Questions & Answers for Transplant Candidates about Multiple Listing and Waiting Time Transfer, United Network for Organ Sharing
• Talking About Transplantation - Questions & Answers for Transplant Candidates about Kidney Allocation Policy, United Network for Organ Sharing
• Talking About Transplantation - What Every Patient Needs to Know, United Network for Organ Sharing
• Your Kidney Transplant: A Handbook for Transplant Recipients
• a list of members on the Renal Transplant Program, along with additional miscellaneous information about UNOS and the VA

SCHEDULE

The final piece of information was our schedule for the day, which looked like this:

• Meeting with the RN in the Transplant Center
• Lab - they drew 14 vials of blood from Ben for various tests
• Chest X-Ray
• EKG
• Renal Transplant Clinic Appts.  
• Met with the Transplant Nephrology Fellow
• Met with the Transplant Team Resident
• Met with Transplant Nephrology MD
• Met with the Transplant Surgery MD
• Social Work Evaluation
• The "evaluation" isn't much of an evaluation at all, in psychological terms.  It is more a brief, informal screen/assessment.  It didn't last long at all, and it was our last appointment of the day.

Overall, this day was not so unlike the many, many other visits we have done at the San Antonio VA.  Labs, Chest X-rays, and EKGs are done periodically anyway.  It also isn't uncommon to meet with a different member of the nephrology team every time you have an appointment, so you get used to answering the same questions over and over again.  Ultimately, the visit to the meet the transplant team turned out to be nothing out of the ordinary, so there was really no need for the pre-trip anxiety, LOL.  

TRANSPLANT INFO

The transplant committee meets every Monday.  As far as we have been told, the only thing left that they want are the biopsy results.  These were included in Ben's post military medical file, which he provided to the nephrology team at the San Antonio VA.  They were going to have it scanned into the system, but apparently it isn't showing up yet - no big surprise.  Ben's SA VA transplant coordinator called today to ask about the test results, and he told her he had turned them in to the PA in nephrology but we have our own copy if needed.  

From what we were told, there doesn't seem to be any reason Ben will not be added to the UNOS list when the committee meets.  After that, it will probably take about another week before we hear from the the pre-transplant RN - she will call us to let us know that Ben has been placed on the list.

Ben's GFR continues to run between 15 and 19 percent.  Oddly enough, the MDs from both transplant nephrology and transplant surgery spoke about possibly wanting to wait for up to one year before doing the transplant.  It is an interesting line they must walk, choosing the best time to perform the transplant.

As I have mentioned in a previous post, it is best to do a transplant prior to a patient beginning dialysis.  This has to do with the fact that the mortality rate increases for transplant recipients after beginning dialysis, so they do not want to wait too long.  However, they do not want to do a transplant too soon either.

A living donor is preferable to a deceased donor, for the obvious reasons as well as the fact that a living donor kidney has a life of about 15-20 years, while a typical deceased donor kidney generally lives about 10 years.  Being that Ben is a young kidney transplant patient, the wise thing to do is wait until we absolutely have to do the kidney transplant and pray that one of his living donors is a match.

LIVING DONORS
Once we hear from that Ben has been placed on the UNOS list, his living donors will have to contact his transplant coordinator to request being tested as a possible donor match.  The transplant team is not allowed to contact a list of possible donors, as that would be considered solicitation.

The VA will begin testing possible donors one at a time.  I'm unclear as to why they will only test one possible donor at a time.

Interestingly, most people would think a blood relative would be the best possible match.  However, because Ben has a form of Chronic Kidney Disease that can return, a relative is not necessarily the best match.  For some reason, the chance of the FSGS returning is higher when a blood relative match is used.  Therefore, a non-relative match is actually preferable in cases such as Ben's.

QUALIFICATIONS FOR LIVING DONORS: Blood Type Compatibility Chart
Candidate's Blood Type                        Donor's Blood Type
              O                                                         O
              A                                                       A or O
              B                                                       B or O
             AB                                                A, B, AB, or O

Being that Ben has an O blood type, it clearly limits his donor possibilities.  If none of his living donors are a match, at least he will be on the UNOS list and accruing time.

Ben contacted his best-friend this-afternoon, to see if he knows what his blood type is; Ben's best-friend has already expressed interested in being tested as a possible donor.  Can you believe that his best-friend is the exact same blood type?!?!?!  GOD IS GREAT, ALL THE TIME!!!!  This doesn't mean that his best-friend will be a match, but it is encouraging.

CONSIDERING BEING AN ORGAN DONOR?
Here are the organs that a living donor may give:

• single kidney
• segment of the liver
• lobe of a lung
• portion of the pancreas
• portion of the intestine

In order to qualify to become a living donor, you must be physically fit; in good general health; and free from high blood pressure, diabetes, cancer, and kidney, heart, liver and lung disease.  You also cannot have HIV or hepatitis.  Candidates are generally between the ages of 18 and 60.  These donations may be directed (for a specific person) or non-directed or altruistic donations, whereby you donate to an anonymous person on the wait list.  If both parties agree, the donors may eventually meet the transplant candidate.

The first test is, obviously, a blood test, for the following purposes: blood type; tissue typing; crossmatching ( another type of blood test done prior to transplant to see if the candidate will react to the donor organ); and an antibody screen.  Additional tests include: a 24-hour urine test, to check kidney function; chest X-ray and EKG; radiologic testing, to allow doctors to view the organ you want to donate; psychosocial and/or psychological evalutation; gynecological examination; and a cancer screening.

If the transplant candidate is covered by private health insurance, or if they are going through the VA, the donor's medical expenses are generally covered.

In terms of a kidney donation, surgeons now have the option to use a laparoscopic procedure in which the donor will have three small incisions in the abdomen, affording a potentially shorter recovery time.  Most kidney donors remain in the hospital for 3 - 7 days post-surgery and return to normal activities after 4-6 weeks of recovery.

On a completely unrelated side-note, it is 104 outside evening.  Although our air-conditioner seems to be providing the 20 degree cooling the apartment managers claim it should provide, that still means it is 83 degrees in the apartment right now.  UGH!!!!   Please continue to pray for some rain down here in Texas.  I cannot wait for some cooler autumn weather.

Difficult Week & Meeting with Transplant Team

This has been a very difficult week for me.  I had to have my cat Samson, 16 years old, put to sleep this week.  My once vibrant, happy, healthy boy had been losing weight rapidly and becoming more and more withdrawn over the last month.  We had blood work done about two weeks ago and everything came back relatively normal, but then he lost two more pounds in two weeks and appeared to no longer be able to defecate.  When we took him back to the vet, the doctor could feel a very large lesion in his intestine.  Being 98% sure that Samson had intestinal lymphoma, there really was nothing the doctor would have been able to do for Samson.  So, we took him home and spent one last evening with him.  Taking him to the vet and saying goodbye was one of the hardest things I've ever had to do.  The doctor looked down at Samson and said, "You will get to meet my kitty in heaven today."  It was heartfelt and somehow made me feel more at ease; having a Christian vet was yet another example of God's grace and love.  We had Samson cremated and one day, when I am ready, we may use his ashes to plant a tree in his honor.

He is already missed and will always be loved.

Ben and I leave this Sunday for Nashville.  We will be meeting with the transplant team.  I am not sure, at this time, what all that will entail.  I don't think they will be doing any more testing, but I could be wrong about that.  I will definitely let everyone know what all takes place and how the visit goes.  I am anxious to find out how soon they will begin testing donors.  We will be heading back to Texas on Tuesday.

Busy Month

Sorry I haven't updated in a while; it's been a rather busy month.  I have lots of fun pictures to share though.

After school let out for the summer, the girls were here for a full week before leaving for the summer.  We had a great time spending time together.

We went to the zoo again.

The hippo decided he didn't like us standing next to the glass; thus the nice face shot, taken as he rammed his nose into the glass.

We had great fun feeding these beautiful birds.  

Then we took the girls to Sea World.  It was my first time to go as well; we were all really excited!

The Sea Lion show also featured a walrus and an adorable otter.

In addition to the Sea Lion show, we also enjoyed a few of the rides and spent time in the water park.

Then Ben and I took the girls to Oklahoma, to drop them off with their mom.  In a parking lot on the front side of our hotel, there was quite a large flock of Canadian Geese.  I think they are so beautiful, so we walked  down to get some pictures.

With the girls gone for the summer, Ben and I made plans to do quite a bit of camping on the weekends.  Here are some highlights from our trips thus far.

Overall, we had a really great time at both parks.  This weekend, we will be heading back to Colorado Bend State Park.  We are really looking forward to hiking out to Gorman Falls.  I can't wait to share some of those pictures with you as well.

Otherwise on the home front, we have received our itinerary to travel to Nashville at the beginning of August. In the meantime, we continue to monitor Ben's blood pressure and alter his medication as needed.  Other than the variations in BP, he is still doing well.  Praise God that Ben has remained stable and has not yet needed to begin dialysis!

Lab & Transplant Updates

The medication they put Ben on to get his pH back in balance seems to be working well.  When he had labs done last week, his potassium and phosphorus levels were better.  We thought we were doing pretty well again, until he started feeling odd again last night.  He was feeling nauseous, had a sticky cotton-mouth type feeling, and his eyes were burning [generally and indication to him that his BP is high].  Well, his BP was running between 130-150 / 89-95; this-morning his bottom number was up to 100.  His BP is generally regulated fairly well with his medications, usually running right around 120/70, so this was definitely reason for concern.  He took his BP meds about 6:30 this-morning and gave it sometime to take effect, but the bottom number was still 95 an hour or so later.  He put in a call to Katherine at the Renal clinic and she scheduled him to come in for some more labs this-morning; she made him wait in the office until she got the results, just in case he needed to be admitted and start dialysis.  Praise Jesus, everything else was okay, so no dialysis.  She just changed him to a different BP med, one that will be taken twice a day, and wants him to check back in later this week or sometime next week.

We received a call from Nashville a couple days ago.  They have Ben and I scheduled to fly in to meet the transplant team on August 1st.  We do not have to go for a full week, as we originally thought; we will only be there for one day to meet the team and then head back to San Antonio until further notice.  It still appears, however, that they will not begin testing potential donors until after we meet with the transplant team.  I must say, while I am happy that we won't have to be gone for an entire week, I was disappointed that we won't be going to Nashville until August.

After todays trip to the VA for more lab work, the Nashville trip may be expedited - if we are lucky.  The PA mentioned speaking with someone who may be able to get the process to speed up a bit.  Her reason for doing so is that the best course of action would be to get the transplant prior to beginning dialysis.  Being that Ben has started experiencing more symptoms lately, we've had to adjust medications more frequently, and he is currently only 2-4 points away from Stage 5 CKD, we are really pushing the envelope at this point.  Additionally, in regards to transplant, the mortality rate apparently goes up after someone has to start dialysis; thus the reason they want to see if they can speed up the process and get us to Nashville sooner.  I really hope and pray they are able to do that.  It will be a relief when they begin testing the potential donors.  It will be nice to know if there is a match or not.  If not, at least we will know one way or the other.

The twins graduate from 5th grade tomorrow - on to JH next year for them!  I will probably take some pictures tomorrow and post them when I can.  Hope everyone is having a great summer!

Random Updates

We went camping again last weekend.  This time at Colorado Bend State Park.  I really like that park, but it certainly is much more primitive.  We actually camped in a primitive spot this time too - a mile hike to get to our camp site.  I didn't take any pictures this time around, but we had a pretty good time.  A raccoon stole our tortillas and made them into a midnight (actually, it was about 3 in the morning) snack, LOL.  The one food item we forgot to bring inside the tent and pack away.  Ben and I definitely chalked this trip up to a learning experience.  As soon as we got home, I started looking into ultralight backpacking equipment again; I think we will be making some equipment exchanges before doing that again.  : ))

We still have no further news on the transplant.  The last time Ben had labs done, his phosphorus and potassium levels were high, so we are trying to watch those things once again.  His acid levels were also high, so the doc put him on some new pill to try to get the PH back in balance.  Other than that, we are still waiting...

My parents plan to come down this weekend for a visit.  They wanted to come visit before the girls are gone for the summer.  Ben and I will be driving them up to Missouri soon after they get out of school.  I'm trying not to think about it too much because all summer is a really long time.  : (  Anyway, my parents are going to be bringing our mountain bikes down with them, so Ben and I should be able to start visiting some trails soon.  I'm really looking forward to that.

Okay, just wanted to touch base.

I DON'T WANT TO GIVE UP CHEESE!

Ben and I are still working on this whole eating healthier and working-out thing.  Ben is still holding steady at about 14 lbs lost; I am currently at about 7 lbs lost.  Since we stopped the Daniel Fast, Ben's weight seems to be staying about the same, but mine has slowly began to creep up again.  How frustrating!!!  Oh well, we did get off track with eating healthy over the weekend.  Plus, we had some stomach bug over the weekend, so we didn't work out much either.  Time to get our focus back!

Ben really shouldn't eat cheese, due to his kidney's, and I shouldn't eat cheese either - for the many obvious reasons.  The problem is WE BOTH LOVE CHEESE!  So, we have been trying to find some good recipes for cheese alternatives.  Here is one we tried out recently that actually turned out pretty good.  This recipe came from vegweb.com

Nutritional Yeast Queso Sauce

    1/4 cup nutritional yeast
    1/4 cup flour
    1 teaspoon paprika
    1 teaspoon salt
    dash garlic powder
    1 cup water
    2 tablespoons margarine
    1 1/2 cups salsa or 1 (14 1/2 ounce) can diced tomatoes and peppers (RoTel or other brand)
    tortilla chips, to serve   

1. In a saucepan combine dry ingredients (nutritional yeast, flour, paprika, salt, and garlic powder).
2. Whisk in water. Continue to whisk constantly over medium heat until mixture is thick and bubbly. Remove from heat.
3. Stir in margarine until melted, then stir in salsa.
4. Return to low heat and cook just long enough for salsa to heat. Pour over chips and eat like nachos or use as a dip.

We used BRAGG Premium Nutritional Yeast Seasoning, bragg.com.  I bought this product at a local health and nutrition store.  We ended up adding extra nutritional yeast to this recipe, to give it a little more of a cheese flavor.  This product is also good to just sprinkle on top of vegetables and such.  I think it has the flavor of a very sharp cheddar. 

We will be taking the girls to their grandparents, in Missouri, shortly after they get out of school.  Most likely Ben and I will do the Daniel Fast again at that time.  It will be easier to do it again when we don't have to cook two separate dinners each night.

Anyway, just wanted to let you all know about our yummy cheese alternative discovery.

Transplant Approval & Other Updates

We received a call from Ben's transplant coordinator last week.  Washington has approved Ben to be placed on the transplant list.  They just wanted him to do a couple more tests, - and Eco cardiogram and a Doppler - both of which he has already done.  Now we just have to wait for a call from the hospital in Nashville, to find out when we will be going out there for our week long, pre-surgery visit.

It looks as though God may have timed everything just perfectly for us.  God's timing is always perfect, but this is actually what we have been hoping and praying for.  If everything goes smoothly, it still looks like it may be possible for Ben to have the transplant sometime this summer.  That would be perfect timing for us because the girls will spend the summer with their mom and/or grandparents.  I believe that will be less stressful for the girls -  because they won't be here when he is gone for the surgery and hopefully will still be gone when he returns home.  I think if they are with their mom and/or grandparents they will be more preoccupied and less likely to worry.  Plus, it will probably make things easier for Ben and I to settle-in to his recovery time at home.

I believe I forgot to mention, in the last post, that Ben and I completed the Daniel Fast on Good Friday - our wedding day.  The fast truly did help both of us to become much more aware of what we are eating and what is in the food that we are eating.  In the end, Ben lost 14 lbs and I lost 9 lbs.  We have now added meat and dairy back into our diet; however, we are trying to keep those things to a minimum and continue to focus on whole grains, fruits, and vegetables.  We are also trying to begin working out more regularly.  We wanted to start P90X, but my ankle is not going to allow us to do that right now.  Instead, we are doing some cardio in the gym [me on the eliptical and Ben on the treadmill], hapkido training everyday, and then doing the strength training portions of P90X.

The girls are all doing well.  We have survived TAKS testing.  We found out yesterday that Kaley passed both the math and reading portions - WOOHOO!!!   Angela also passed the math portion - getting almost all of the questions correct! - but missed passing the reading portion by 6 points.  We are very proud of her for doing so well on the math portion, and we are confident that she will pass the reading portion when she retests.  Being that Solina just completed her TAKS tests last week, and Angela and Kaley just did their Science test last week, we do not know the outcomes for any of those tests yet.

Okay, I think that is it for now.  I'll try to keep y'all as up-to-date as possible.  I know there are several people reading this who do not show up as following the blog - I want you to know that Ben and I appreciate your support.  : ))

Wedding Day

Hi everyone.  Ben and I got married yesterday, on Good Friday.  We were going to get married today, at his church.  However, due to some communication difficulties, we ended up getting married at the local JP office on Friday instead.

It worked out kind of nicely this way.  The JP was very kind to come in on his day off, being that it was Good Friday and the office was closed.  We called to see if we could get married on that day, just on the off chance that they would be open that day.  This kind gentleman, Roger Lopez, was willing to come in on his day off and perform the ceremony.  [He had eight day old twin boys at home and told us that Friday was the first day he has been out of the house.]  This was also Ben and I's last day of the Daniel Fast - what a wonderful way to conclude our fast!

It ended up just being us and the girls, since my friends ended up having car trouble and couldn't make it and my parent's weren't able to be here until today.  That's okay though; we didn't do anything special.  Here are a couple pictures we took when we got home.  I was going to upload a video Angela took on her dad's phone, but I cannot get it to upload right now.

But FIRST, here is the proposal that Ben read to me on the evening we got engaged.  I said a while back that I would post it and never did.  So I figure now is as good a time as any!

I love you more then words can describe. This has been a surreal experience.  God has truly moved through our relationship.  And has answered our prayers.  I am asking you right now Naomi Cox if you will join me on a Journey.  This journey will not be easy nor will it be anything we can’t handle with Gods help.  With Gods hand holding ours he will guide us through.  This journey will be a wonderful adventure.  So I am asking you today to take my hand and be my wife and share this adventure with me.  Through all that life brings, bad or good, may we grow together in love eternal, and grow in our faith and love in Jesus Christ.  May we be a light to those that live in darkness, and an example to our kids as to what a Godly house should be.  I want no one other then you to share this journey with me.  Till we reach the end and are taken to see our maker may we bless each other with our love for one another and our love for others.  It would be a great honor if you would become my wife.  Will you Marry me I love you.

I hope everyone has a blessed Easter weekend.

 ⁴⁵ From noon until three in the afternoon darkness came over all the land. ⁴⁶ About three in the afternoon Jesus cried out in a loud voice, “Eli, Eli, lemasabachthani?” (which means “My God, my God, why have you forsaken me?”).

 ⁴⁷ When some of those standing there heard this, they said, “He’s calling Elijah.”

 ⁴⁸ Immediately one of them ran and got a sponge. He filled it with wine vinegar, put it on a staff, and offered it to Jesus to drink. ⁴⁹ The rest said, “Now leave him alone. Let’s see if Elijah comes to save him.”

 ⁵⁰ And when Jesus had cried out again in a loud voice, he gave up his spirit.

 ⁵¹ At that moment the curtain of the temple was torn in two from top to bottom. The earth shook, the rocks split ⁵² and the tombs broke open. The bodies of many holy people who had died were raised to life. ⁵³ They came out of the tombs after Jesus’ resurrection and went into the holy city and appeared to many people.

 ⁵⁴ When the centurion and those with him who were guarding Jesus saw the earthquake and all that had happened, they were terrified, and exclaimed, “Surely he was the Son of God!”

Matthew 27:45-54

Camping @ Canyon Lake

We enjoyed another weekend at Canyon Lake.  This time we stayed for two nights, at a different park.  Last time we stayed at Potter's Creek Park, this time we stayed at Canyon Park.  There are fewer amenities at Canyon Park, but we actually preferred Canyon Park.  Canyon Park has many more tent sites to choose from, the swim beach was larger, there are plenty of sites with access to areas of the lake suitable for swimming, and there is a nice hiking trail throughout the park.

So, here are some of the highlights from this camping trip.  Hope you enjoy!

Some of the visitors to our campsite.

 "For since the creation of the world God's invisible qualities - his eternal power and divine nature - have been clearly seen, being understood from what has been made, so that men are without excuse."  Romans 1:20

There are always beautiful things to see in nature.  

I believe this is a centipede.  Pretty creepy, but oddly beautiful with its bright orange legs. 

We did some hiking and geocaching while at the lake this weekend.  We had a good time.  Poor Kaley took a couple of pretty good falls, but she was a real trooper the entire time.  She never once complained, and she was willing to try new things.  We made up a Best Camper Award to give here when we returned home, to let her know how proud of her we were.  She was really happy about that award.  : )

Another picture from when we were out geocaching.

Fasting

"At that time I, Daniel, mourned for three weeks.  I ate no choice food; no meat or wine touched my lips; and I used no lotions at all until the three weeks were over.
Daniel 10: 2 & 3

Spiritually, fasting is a time when we choose to physically deny ourselves and to seek God.  The Daniel Fast, a partial fast, was written by Susan Gregory and is based on Daniel's three weeks of fasting.  Ben has done this fast before, but this will be my first time.  I have done a 5 day juice fast before, as well as a 10 day Master Cleanse fast, but never the Daniel Fast.  Ben and I choose to do this fast as a means of helping us toward our goal of a healthier lifestyle.  Ron Lagerquist, author of Fasting to Freedom, has this to say about fasting:

"Fasting accomplishes two purposes.  First, it will reveal how much the flesh has taken control of emotions, and secondly, it will serve in breaking the flesh's hold upon the will" (http://www.freedomyou.com/fasting_book/Fasting_And_Addiction.htm).  

I'm pretty sure no one likes to consider the possibility that they are addicted to all the bad stuff in the food we eat.  We really don't like to consider the possibility that we are emotionally attached to the food we eat.  However, I know a lot of people are very familiar with these experiences.

So, first step in living a healthier life = have a healthier relationship with the food choices we make.  The great thing about the Daniel Fast is that you are not eliminating food entirely, so I think it is probably easier for people who have never fasted.

Basically, when doing the Daniel Fast, you follow these basic guidelines:
1. Only fruits and vegetables.
2. Only water for a beverage.
3. No sweeteners and no bread containing yeast, baking powder, etc.
4. No artificial or processed foods.

We are on day three right now.  It feels good to know you DO still have control over the food choices you make.  Susan Gregory offers a blog, http://danielfast.wordpress.com/, and a website, http://www.daniel-fast.com/, where you can find a lot of helpful information.  I actually bought the book for Ben this past Christmas, and I have the book on my Kindle.  Ben didn't have the book the last time he did the fast, but it really is helpful to have the book.  Not only because Ms. Gregory offers many good recipes to choose from, but also because it has a devotional for each day of the fast.

I think that fasting should be an important part of our spiritual life.  Jesus indicated that he believed it to not only be important, but He indicated an assumption that we would practice fasting on a regular basis.

"And when you fast, don't make it obvious, as the hypocrites do, for they try to look miserable and disheveled so people will admire them for their fasting.  I tell you the truth, that is the only reward they will ever get."  Matthew 6:16

I have never fasted regularly, as I should, but Ben and I have both fasted before.  I can tell you, from my experience, it is not a miserable time at all.  It is actually a very freeing experience.  We all know that we have to eat to live.  I think this fact discourages many people when they consider trying to eat healthier and live a healthier lifestyle.  Sometimes we are so entrenched in our bad habits that it feels as though we will never have victory.  That really does not have to be the case - and we do not have to suffer tremendously to get to where we want to be either.

The first fast I ever did was a juice fast after reading Fasting to Freedom.  Lagerquist offers a wonderful literary depiction of the testing of Jesus after His forty day fast.  You can read the exert here: http://www.freedomyou.com/fasting_book/Jesus_Fasting.htm.  Lagerquist concludes with this:

"Fasting is the pilgrimage to the dessert of your soul.  There, you will greet your greatest foe, and in weakness discover the strength of Jesus."

This makes me smile and reminds me of a beautiful hymn:

O victory in Jesus,

My Savior, forever.

He sought me and brought me

With His redeeming blood;

He loved me ere I knew Him

And all my love is due Him,

He plunged me to victory,

Beneath the cleansing flood.

Camping @ Canyon Lake

I forgot to post the last entry before we left for the weekend, but we had a great time.  It was the first time any of us had been to Canyon Lake.  The lake isn't a really large one, but it is very pretty out there.  The water seems to be clear, so no worries about swimming in it.  I have an issue about swimming in water where I can't see my feet.  LOL.

I want to share some of the pictures from our trip.  : )

The park was almost full when we arrived.  There was one site left - a screen cabin.  We opted to set up our tent anyway, considering we didn't bring an air mattress.  Sleeping on the concrete didn't sound like too much fun.

It was wonderful to be outside and have such a beautiful view of the lake.

Here's Ben - sitting at our picnic area, just enjoying the scenery.  

As you look out across the lake, the water is a pretty blue-green color.  The water level is really low right now though, so we will pray for more rain! : )

We went for a walk, to check out our surroundings.  The girls were looking for fresh water mussels.

We also enjoyed watching the deer.  There were several in this little patch of trees.  They stayed over there most of the evening, but did come across the street into the small field behind our camp site.

We always enjoy getting to see the sunbeams as the sun peaks out from behind the clouds.

We also enjoyed watching a beautiful sunset through the trees.

This little guy came to visit for a while.  He was enjoying the trees just above our picnic area, and I was able to get a few pictures.  I don't know much about birds, but I think this is a Scissor-tailed Flycatcher.  It was a very pretty little bird.

This picture was taken at the swimming area.  This should give you an idea of how low the water level is right now.  You can see where the water is generally about 4 and a half feet high on that gauge.  Being so early in the year, the water was REALLY cold also.  The girls enjoyed it anyway.  Ben refused to go out there, LOL.  I went out, but didn't stay long. 

Overall, we had a great time.  We didn't really decide we were going to go camping until the Thursday evening, so we weren't as prepared as we should have been.  The girls got a little bored at times; primarily because we forgot to bring a ball for them to play with.  We ended up playing a game of charades before bedtime.  That was quite entertaining, LOL.  Next time, we will bring some more game ideas to play in the evening.  Hopefully we will get some good rains to bring the water levels up as well.

Ben just downloaded a geocaching application to his android.  We are really looking forward to going out again and trying it out.  I think it will be a great way to keep everyone busy while getting to see more of the beauty nature has to offer.

^{Psalm 104:10-15}

¹⁰ He makes springs pour water into the ravines; 
   it flows between the mountains. 
¹¹ They give water to all the beasts of the field; 
   the wild donkeys quench their thirst. 
¹² The birds of the sky nest by the waters; 
   they sing among the branches. 
¹³ He waters the mountains from his upper chambers; 
   the land is satisfied by the fruit of his work. 
¹⁴ He makes grass grow for the cattle, 
   and plants for people to cultivate— 
   bringing forth food from the earth: 
¹⁵ wine that gladdens human hearts, 
   oil to make their faces shine, 
   and bread that sustains their hearts. 

Traveling, Traveling, Traveling, & Doctors Appts

Whew!  In the last month we haven't been home much on the weekends.  Abilene to see a friend's son get baptized, Houston for my dad's birthday then to Denton to drop the girls off for Spring Break with their mom, Abilene again to pick-up some furniture and back to Denton to pick up the girls.  I think it will be a while before my back forgives me, LOL.

Ben had three appointments on Tuesday: one with his primary about his knee and hip [Ben had knee surgery after being discharged from the Navy for an injury to the left knee.  Years of compensation seem to have led to problems with his right knee and hip], more labs, then a meeting with nephrology.

His primary felt a little helpless, since he can't really prescribe the usually pain medications due to the negative side-effects on the kidneys.  He also said he would like to do an MRI, but he can't because they could need to use contrast - also bad for the kidneys.  So, for now, it is a waiting game.  His primary wants to wait until after the transplant to look further into possible damage to Ben's right knee.

Ben's appointment with the nephrologist was scheduled for 2:15.  I'm not sure how long we waited, but we ended up being seen by Katherine, the P.A. in the nephrology department.  She knew that the nephrologist was behind and that we had been waiting for quite some time, so she offered to see Ben because she is familiar with his case.  It is always a pleasure to meet with Katherine.  She is a "straight shooter," which leads to some pretty amusing visits, considering Ben's sarcastic sense of humor.  The labs had not come in yet, so they just discussed symptoms and such, to see if there has been any changes with which to be concerned.  She called the next day, after she received the lab results.  Everything continued to be stable, but she still isn't happy with where his blood pressure is hovering.  As a result, she instructed him to cut out one of his blood pressure medications and to begin taking a whole pill of another medication he had previously been cutting in half.  We just have to be extra careful about potassium intake now.

Well, we are all looking forward to going out to the lake this weekend.  We are going to go visit Canyon Lake.  We are planning to check out a couple of the campgrounds and will hopefully be able to camp tonight and go swimming for a while tomorrow.  I will be sure to take pictures to share later.  I hope everyone has a wonderful and blessed weekend.

Update #3

Ben, the girls and I went to Abilene to visit with some very dear friends of mine.  My best friend and her husband have a 10 year old daughter and a 5 year old son.  The five year old recently announced that he wanted to be "babpabatized," so we made the 4 and a half hour trip to be there for it.

Truthfully, we went up a couple of weekends ago, but the minister that was going to perform the baptism was sick.  Everything was rescheduled, so we made a second trip a couple weekends later.  Both trips were great.  The kids all hit it off really quickly.  They spent the weekend jumping on the trampoline and/or playing the Wii.  We were all very happy to see the kids get along so well, and the adults all had a good time also.

The baptism was wonderful.  I was sure I would lose it and start bawling.  Thankfully, I was saved from that by being asked to take photos.  I don't have any of the pictures to post, but it really was a great ceremony.

On our second trip to Abilene, my bestie took some engagement photos for Ben and I.  Here are a few of our favorites:

The obligatory kissing picture.  We actually have a lot of these, LOL.

The wind was crazy that day.  I still like this picture though.

We had a really good time.  Thank you Darlyn for the beautiful memories!

Update #2

Ben had an appointment with the vascular lab on March 2nd and then with a vascular doctor on the 3rd.  His fistula still looks okay, but there is a little concern about some narrowing at one end of the vein.  The doctor said things are okay right now, but she wants him to begin doing some exercises with a stress ball, or something similar, to help get the vein to grow.  The objective is to reverse the narrowing, because if the narrowing continues, they will have to go in and fix the problem by using a balloon stint. The main concern about doing that is that the dye they have to use is hard on the kidneys.  Considering that Ben is at the end of Stage 4, we don't want to do anything that may push him into Stage 5.

He was also finally able to go to the dentist.  Everything checked out well there also.  The surgery coordinator called to let us know that she has all of the paperwork she needed.  The package should be on its way to Washington already and we are praying we hear good news soon!

Quick Update #1

Things have been pretty busy around here, so it has been a while since I have updated.  I'm going to do a few updates right now.

First of all, I finally got everything packed and moved to San Antonio.  Talk about a busy week.  I spent a week packing the rest of my stuff, then spent all day Friday and then Saturday morning loading a U-Haul trailer.  Thank you Lord for the help of a very wonderful neighbor, that pretty much helped me all week, and for my parents, who stopped by to help on Saturday morning.

I drove the trailer to San Antonio on Saturday and Ben and the girls helped get everything unloaded that evening.  I am still amazed at how much stuff I had stuffed into that tiny apartment!  After unpacking the trailer, it looked like my apartment had exploded here in San Antonio, LOL.  I spent the next week getting things put away.

The most awesome part of getting here happened later that evening.  Ben and I were sitting out on the back patio, enjoying the evening and relaxing for a bit.  After a while, he got up and went inside for a bit and then brought his laptop back outside with him.  I didn't really think anything of it.  Then, he called for the three girls and had them come outside as well.  Okay, I knew something was up at that point, but still didn't know what was going on.  Ben proceeded to read something he had written for me.  A proposal!  It was fantastic - I will post it, of course.  The girls were excited too.  One of them was squealing very loudly while the other two hugged one another and jumped up and down in a circle.  It was too cute!

So, here are a couple pictures of the ring.  I absolutely love it!

I picked out this ring a while back, but I had no idea he had already ordered it.  Apparently it arrived on Friday, so he officially proposed on Saturday.  Ben isn't too good at keeping gifts a secret for very long, LOL.
















The setting is called Open Arms.  I think this setting is absolutely perfect, considering Ben has three beautiful daughters that have welcomed me with open arms.










And here is the proposal he had written previously and read to me that evening:
"I love you more then words can describe. This has been a surreal experience.  God has truly moved through our relationship.  And has answered our prayers.  I am asking you right now Naomi Cox if you will join me on a Journey.  This journey will not be easy nor will it be anything we can’t handle with Gods help.  With Gods hand holding ours he will guide us through.  This journey will be a wonderful adventure.  So I am asking you today to take my hand and be my wife and share this adventure with me.  Through all that life brings, bad or good, may we grow together in love eternal, and grow in our faith and love in Jesus Christ.  May we be a light to those that live in darkness, and an example to our kids as to what a Godly house should be.  I want no one other then you to share this journey with me.  Till we reach the end and are taken to see our maker may we bless each other with our love for one another and our love for others.  It would be a great honor if you would become my wife.  Will you Marry me I love you."

Of course, I said YES!  : ))

Update

Ben had labs run this-morning and spoke with Katherine, the PA at the renal clinic.  His creatinine level is at 4.3 right and his hemoglobin level has gone down a little bit.  The National Kidney Foundation (NKF)  explains what creatinine is as follows:
 "Serum Creatinine: Creatinine is a waste product in your blood that comes from muscle activity. It is normally removed from your blood by your kidneys, but when kidney function slows down, the creatinine level rises. Your doctor should use the results of your serum creatinine test to calculate your GFR."  So, the glomerular filtration rate, GFR, is calculated based on the levels of creatinine in the blood.

I think most people are familiar with what hemoglobin is.  Just in case, this is what the NKF says:
"Hemoglobin: Hemoglobin is the part of red blood cells that carries oxygen from your lungs to all parts of your body. Your hemoglobin level tells your doctor if you have anemia, which makes you feel tired and have little energy. If you have anemia, you may need treatment with iron supplements and a hormone called erythropoietin (EPO). The goal of anemia treatment is to reach and maintain a hemoglobin level of at least 11 to 12."


This means that he does not have to begin dialysis right now, because his creatinine levels are not at that point yet.  The lower hemoglobin level probably accounts for the increase in fatigue he has been experiencing lately.  Katherine said she thinks the dizzy spells may be related to his blood pressure.  She wants him to begin taking his blood pressure medicine at the same time everyday for a week and check back with her next week.  Apparently, his blood pressure may be dropping too low right now, which could cause the dizzy spells.  If this is the case, they will adjust the level of his blood pressure medication and see if that takes care of the problem.

God is so awesome!  : ))

"The name of the Lord is a strong tower; the righteous run to it and are safe."  Proverbs 18:10

Busy, Busy, Busy

So, I took one truck load of stuff down to San Antonio.  I spent the weekend before Valentine's Day making about 15 trips up and down the three flights of stairs at my apartment complex.  Here are my conclusions about that: #1 I CANNOT believe I had so much stuff stored in this postage stamp size efficiency apartment; #2 apartment complexes with a third floor should ALWAYS have an elevator!; #3 I really wish I had the money to just leave everything here and start over again.  Ugh, LOL!  At least unloading was easier because the craft stuff and holiday decorations went into storage.  That just left clothes and bathroom stuff to be carried up to the new third floor apartment. : )

It was a busy week, unpacking and cleaning and getting ready to go out of town.  Valentine's Day was great.  The girls made some Valentine's Day cards for Ben and I.  Aren't they adorable?!?

That is Ben cooking in the background.  He made me an awesome Valentines Day dinner.  I had bacon wrapped fillet mignon and a loaded baked potato.  Yummy!

I found this really cute, double heart,
Lucky Bamboo plant for Ben's
Valentine's Day gift.  (Please pardon
the desk mess.)





                                                                              




I also made these earring holders for the girls, in addition to the candy and stuffed animals they received for Valentine's Day.


Then we loaded up the three girls and drove to Abilene this past weekend, where I finally got to introduce Ben and the girls to my best-friend, her husband, and their two kids.  The kids all hit it off quickly and spent the weekend jumping on the trampoline.  We are looking forward to spending more time with them in the future.

Ben heard from his surgery coordinator on Tuesday.  All he has left to do is get a TB test, which he went in for this-morning.  He will go back on Friday to have that test read.  After that, his package will be ready to send to Washington.  According to April, the surgery coordinator, it can take about a month for Washington to decide whether or not the Approve, Defer, or Deny.  That means we could possibly be looking at visiting a transplant center in about a month and a half or two months.  That's is great news!  The not so great news . . . Ben has been experiencing some new symptoms over the past week.  His appetite has been fluctuating quite a bit, with little to no appetite on some days.  He has also started having trouble sleeping at night, waking up three or four times a night, which adds to the fatigue he has been experiencing.  Probably more concerning is the fact that he has started having some dizzy spells.  He called and spoke with the Katherine, the PA at the dialysis clinic, and she scheduled him for more labs tomorrow, after which he is supposed to go speak with her.  Her concern is that he is already so close to stage 5 and some of the symptoms he is experiencing generally indicate someone entering into stage 5 of kidney disease.  We are going to pray this is something that can be addressed by adjusting medications, but there is a large possibility that Ben will need to begin dialysis soon.  We were hoping to be able to avoid beginning dialysis before the kidney transplant, but we will just have to see what the labs have to say.  About a month ago, Ben's GFR was at 19%, but two weeks ago his GFR was 17%.  The nephrologist said he may be fluctuating between 17 and 19%, but with the new symptoms . . .  We will just have to see what the labs say.  My next concern is that the fistula probably has not had time to mature enough for them to use it for dialysis purposes, being that he has only had it for a month now, but I may be wrong about that.  I believe his next vascular appointment is in about two weeks, but depending on what Katherine says tomorrow that may change as well.

Lots going on right now, to say the least.  I am finishing the packing process and have a couple of friends that are going to help me load a U-Haul trailer this-weekend.  God is truly amazing; His timing is perfect.  If Ben does need to begin dialysis prior to his transplant, I will now be there to help out with the girls and other things that need to be done.

We continue to praise God for His guidance and His protection.  Please continue to pray for Ben as he nears stage 5 and as we wait to get that package sent and hear back from Washington.  God is great, all the time!