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
Thursday, February 24, 2011
Wednesday, February 23, 2011
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!
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!
Friday, February 11, 2011
Fistula: Love It or Hate It - you gotta have it
Ben and I were looking through the pictures taken last weekend, when we took the girls to the park. There is a really cute picture I took of him holding one of his girls on his hip and swinging her in circles. Hair flying out around her head and arms open wide, she looks right at the camera, at just the right time, and has a huge smile on her face. Remember how much fun it was as a child for someone to spin you in circles until you were both so dizzy you couldn't walk in a straight line? LOL, those were the days.
It really is a great picture, and it will be a wonderful memory. Unfortunately, as we were looking at and talking about all of those fun picture memories, Ben realized something. "You know, I just realized that I am holding her with my left arm." Wow, I didn't even realize it until he pointed it out.
On January 21st 2011, Ben had a surgery that changed a lot of things in his life. Life saving - possibly, life altering - definitely. Ben's nephrologist wanted him to go ahead and have an arteriovenous fistula placed in his arm; in the event that he will need to start dialysis prior to his transplant, it will be ready and waiting. He didn't have to have it done, of course. However, the other option would have been a venous catheter for temporary access, most likely placed in his neck, if he ever had to start emergency dialysis. This type of catheter is only temporary because they are prone to complications, such as clogging and infection. Not to mention the fact that no one wants to walk around with a tube stuck in his/her neck! Obviously he chose to go ahead and have the fistula put in place.
The Davita website refers to this type of access as "the gold standard hemodialysis access." Basically, a vein is connected directly to an artery, causing more blood to flow into the vein. This essentially causes the vein to grow bigger, allowing access for hemodialysis. If that doesn't work, they do an arteriovenous graft, utilizing a synthetic tube under the skin that functions as a vein. Grafts are more prone to infection than a fistula and generally do not last as long; thus the reason a fistula is a better choice.
The surgery went great. You can certainly "feel the thrill," as they say, when you place your hand on his arm. It is amazing how fast and hard the heart pushes the blood through our body! You can also hear it when you put your ear on his arm - the sound reminds me of listening to a baby's heart beat in utero. Ben's fistula is in his left arm, since he is right handed. We are thankful that the surgery went well and everything seems to be good so far; follow-up appointment was good this week and he will report back in three weeks. It definitely means some changes for Ben though. He isn't supposed to sleep on his left side or keep his arm bent for extended periods of time, because it will cut off the blood flow. - I stayed with Ben after the surgery and had to wake him several times to get him off that left side. - No direct impact to the left arm, as that could cause a rupture and major bleeding. That means he can no longer spar in martial arts; Ben is a Black Belt in Hapkido and recently started teaching this form. AND, the PA from the VA dialysis unit told him she doesn't want him lifting more than 15-20 pounds with his left arm. Wow! Forget the fact that Ben regularly lifts far more weight than that for his job . . . This also means that picking up his daughter and giving her the sensation of flying, as he supports her on his hip and spins her in circles, is a BIG NO NO with his left arm.
None of these things are so life altering that it isn't worth it, but it does mean there has to be some major changes to what once was routine in his life. In the meantime, there are still . . .
~Yomi
It really is a great picture, and it will be a wonderful memory. Unfortunately, as we were looking at and talking about all of those fun picture memories, Ben realized something. "You know, I just realized that I am holding her with my left arm." Wow, I didn't even realize it until he pointed it out.
On January 21st 2011, Ben had a surgery that changed a lot of things in his life. Life saving - possibly, life altering - definitely. Ben's nephrologist wanted him to go ahead and have an arteriovenous fistula placed in his arm; in the event that he will need to start dialysis prior to his transplant, it will be ready and waiting. He didn't have to have it done, of course. However, the other option would have been a venous catheter for temporary access, most likely placed in his neck, if he ever had to start emergency dialysis. This type of catheter is only temporary because they are prone to complications, such as clogging and infection. Not to mention the fact that no one wants to walk around with a tube stuck in his/her neck! Obviously he chose to go ahead and have the fistula put in place.
The Davita website refers to this type of access as "the gold standard hemodialysis access." Basically, a vein is connected directly to an artery, causing more blood to flow into the vein. This essentially causes the vein to grow bigger, allowing access for hemodialysis. If that doesn't work, they do an arteriovenous graft, utilizing a synthetic tube under the skin that functions as a vein. Grafts are more prone to infection than a fistula and generally do not last as long; thus the reason a fistula is a better choice.
The surgery went great. You can certainly "feel the thrill," as they say, when you place your hand on his arm. It is amazing how fast and hard the heart pushes the blood through our body! You can also hear it when you put your ear on his arm - the sound reminds me of listening to a baby's heart beat in utero. Ben's fistula is in his left arm, since he is right handed. We are thankful that the surgery went well and everything seems to be good so far; follow-up appointment was good this week and he will report back in three weeks. It definitely means some changes for Ben though. He isn't supposed to sleep on his left side or keep his arm bent for extended periods of time, because it will cut off the blood flow. - I stayed with Ben after the surgery and had to wake him several times to get him off that left side. - No direct impact to the left arm, as that could cause a rupture and major bleeding. That means he can no longer spar in martial arts; Ben is a Black Belt in Hapkido and recently started teaching this form. AND, the PA from the VA dialysis unit told him she doesn't want him lifting more than 15-20 pounds with his left arm. Wow! Forget the fact that Ben regularly lifts far more weight than that for his job . . . This also means that picking up his daughter and giving her the sensation of flying, as he supports her on his hip and spins her in circles, is a BIG NO NO with his left arm.
None of these things are so life altering that it isn't worth it, but it does mean there has to be some major changes to what once was routine in his life. In the meantime, there are still . . .
Love it or hate it, that "thrill" of blood rushing from that artery into that vein is a good sign. We will thank God for the blessing of hearing/feeling the blood flow through that fistula. God is awesome and it is pretty amazing what He has enabled human beings to accomplish!
~Yomi
Tuesday, February 8, 2011
I have to watch my what?
Potassium . . . Right, that one is listed just under sodium - sometimes.
Phosphorus . . . ??? Still a little murky on that one! Okay, so I know what phosphorus is and I get that people with CKD need to watch the levels they eat. Problem is, just as with potassium, companies aren't required to report that on the Nutritional Facts label.
We know that a normal phosphorus level is 3.5-5.5 mg/dL, and that he should avoid foods that are greater than 200 mg in potassium - but we still need to determine exactly how that translates into what we need to do on a daily basis. We found some estimated numbers for daily intake, but this is definitely two more questions to ask when Ben sees the nephrologist. Regardless, keeping track of those numbers is proving to be difficult.
There are so many things we take for granted and do not even consider when we are "healthy." Priorities change and things you never even considered before suddenly become bothersome. Like the fact that companies are not required to report the levels of Potassium or Phosphorus on the Nutrition Facts label, but it is estimated that around 11% (approximately 23 million Americans) may have CKD (as found in Levey AS, Stevens LA, Schmid CH, et al. A new equation to estimate glomerular filtration rate. Annals of Internal Medicine. 2009;150:604–612. and reported on the National Kidney and Urologic Diseases Information Clearninghouse). Admittedly, prior to meeting Ben and beginning this journey, it never crossed my mind for a second. However, it's something that is on my mind often now.
It does take time to track this information down, but it isn't hopeless. I have come across a couple sites that are very helpful in this matter. One of them being the Davita website, which offers a great variety of kidney friendly recipes. They also have a Food Analyzer tool that comes in quite handy. Another helpful site has been the Nutrition Data page at http://nutritiondata.self.com/. This page offers several Nutrition Management Tools, which have proven useful in finding some of this information.
While I realize these sites certainly are not a be-all-end-all for nutrition information, and definitely no substitute for talking with your doctor and/or nutrition coach/dietician, they are nonetheless appreciated.
Okay, that is my little rant for today, LOL. Hopefully Ben can get some useful info from his nephrologist today to help us out in this matter. I'll try to let you all know what kind of new and exciting, kidney friendly, recipes we try - that are low in sodium, potassium, and phosphorus, of course! =)
UPDATE: The visit with the nephrologist went well today. Ben's sodium and potassium levels are okay, but his phosphorus level was too high. He says he accepts blame for that because he has been eating too much cheese and other dairy products lately. We also have to be careful with low-sodium substitutes, as they often use potassium-sulfate or potassium-chloride, which would obviously be bad for the potassium level. Now to focus more on that troublesome phosphorus . . .
Monday, February 7, 2011
Major Changes on the Horizon!
What a great weekend! Ben and the girls came up to visit me in Houston this weekend. Interesting trying to fit two adults and three almost 'tweens' into an efficiency- read postage stamp size - apartment, but we did it. We all went over to spend time with my parents on Friday and Saturday evening. The girls played the Wii on Friday night and again on Saturday, but the adults got in on the action as well on Saturday. Fun, fun, fun! We also took the girls to the Houston Museum of Natural Science to see the Real Pirates exhibit and to visit the Butterfly Center. It was so much fun to see all of the beautiful butterflies fluttering about enjoying the gorgeous sunshine. After church on Sunday, we spent some time at the park. It was great to see the girls having such a good time; it was wonderful to see Ben playing with them!
So yeah, I currently live in Houston and he is three and a half hours away, in San Antonio. That certainly makes it more difficult to attend doctor appointments and such with him. His surgery coordinator, however, has been amazing. We have already completed the things for which I was required to be in attendance, since the coordinator was able to schedule those appointments the last time I was in San Antonio. God bless that woman for being on top of things! Originally, we didn't think he would be able to get a transplant in less than one year. However, things seem to be moving much faster now. The package should be ready to send to Washington in less than three months, at which time they will Approve, Defer, or Deny placing him on the transplant list. So far so good! Despite the fact that Ben is in Stage 4, doctors continue to be surprised at how healthy he is - he is beginning to experience some fatigue, but none of the edema or other symptoms often seen in Stage 4 Kidney Disease. For now, there seems to be no reason that Washington would Defer or Deny placing him on the transplant list - keeping or faith and hope in God that all goes smoothly. Ben is also blessed to have several possible living donors ready and waiting to be tested.
As for me, looks like I will be moving to San Antonio at the end of this month! I have a lot to do in the next couple of weeks. God is great, all the time! ~Yomi
So yeah, I currently live in Houston and he is three and a half hours away, in San Antonio. That certainly makes it more difficult to attend doctor appointments and such with him. His surgery coordinator, however, has been amazing. We have already completed the things for which I was required to be in attendance, since the coordinator was able to schedule those appointments the last time I was in San Antonio. God bless that woman for being on top of things! Originally, we didn't think he would be able to get a transplant in less than one year. However, things seem to be moving much faster now. The package should be ready to send to Washington in less than three months, at which time they will Approve, Defer, or Deny placing him on the transplant list. So far so good! Despite the fact that Ben is in Stage 4, doctors continue to be surprised at how healthy he is - he is beginning to experience some fatigue, but none of the edema or other symptoms often seen in Stage 4 Kidney Disease. For now, there seems to be no reason that Washington would Defer or Deny placing him on the transplant list - keeping or faith and hope in God that all goes smoothly. Ben is also blessed to have several possible living donors ready and waiting to be tested.
As for me, looks like I will be moving to San Antonio at the end of this month! I have a lot to do in the next couple of weeks. God is great, all the time! ~Yomi
Tuesday, February 1, 2011
How We Came to be Here
God often works in mysterious ways. Ben was diagnosed with Chronic Kidney Disease about ten years ago and was treated for about three years. Unfortunately, he lost his insurance and has been 'going it alone' for the last several years. It wasn't until November of 2010 that he returned to the doctor.
Ben had made a lot of changes to his diet and was working out regularly, effectively controlling his blood pressure until his personal life experienced upheaval: job loss, marriage problems, separation when he accepted a job offer in Texas, and the stress of going through a divorce. He moved from Missouri with his three daughters and was starting life over again. He returned to doctor care after months of waking every morning with a bad headache. His blood pressure was so high the doctors immediately admitted him to the hospital, where he spent the next three days. It's unfortunate that our veterans often do not know what medical care they are entitled to when they leave the service. It is a blessing from God someone at the hospital put Ben in contact with the VA, where he is now receiving regular medical treatment. This is also how he found out that he is toward the end of Stage 4 Kidney Disease, with his GRF (Glomerular Filtration Rate) currently at 19.
Remember God works in mysterious ways? No one ever wants to go through a divorce, especially when there are children involved. However, sometimes that is the very best thing that could happen for those involved. If he had not taken the job in Texas and moved his family here, chances are he would not have known the extent his kidney's are failing, and he may not have found out in time about the VA services. God's timing is perfect! Ben and I have been together for two months now, and I came into this complex picture just in time to become his Support Person. His girls have adjusted well to the new state, new schools, and new friends.
I honestly don't know who will be reading this blog, but I do know that it will be a therapeutic experience to journal our way through this experience. We sincerely hope that, along the way, we may be able to help someone else in a similar circumstance. In the meantime, I feel like I'm in graduate school again - you know the feeling? As though there is a major project or paper due and you are running out of time to get all of the research done! So, I'm off to do some more reading. : ) Thank you to the many sites that provide excellent information, as well as other's who are blogging about their experience with CKD - the information and experiences you offer are valuable and very much appreciated. ~ Yomi
Ben had made a lot of changes to his diet and was working out regularly, effectively controlling his blood pressure until his personal life experienced upheaval: job loss, marriage problems, separation when he accepted a job offer in Texas, and the stress of going through a divorce. He moved from Missouri with his three daughters and was starting life over again. He returned to doctor care after months of waking every morning with a bad headache. His blood pressure was so high the doctors immediately admitted him to the hospital, where he spent the next three days. It's unfortunate that our veterans often do not know what medical care they are entitled to when they leave the service. It is a blessing from God someone at the hospital put Ben in contact with the VA, where he is now receiving regular medical treatment. This is also how he found out that he is toward the end of Stage 4 Kidney Disease, with his GRF (Glomerular Filtration Rate) currently at 19.
Remember God works in mysterious ways? No one ever wants to go through a divorce, especially when there are children involved. However, sometimes that is the very best thing that could happen for those involved. If he had not taken the job in Texas and moved his family here, chances are he would not have known the extent his kidney's are failing, and he may not have found out in time about the VA services. God's timing is perfect! Ben and I have been together for two months now, and I came into this complex picture just in time to become his Support Person. His girls have adjusted well to the new state, new schools, and new friends.
I honestly don't know who will be reading this blog, but I do know that it will be a therapeutic experience to journal our way through this experience. We sincerely hope that, along the way, we may be able to help someone else in a similar circumstance. In the meantime, I feel like I'm in graduate school again - you know the feeling? As though there is a major project or paper due and you are running out of time to get all of the research done! So, I'm off to do some more reading. : ) Thank you to the many sites that provide excellent information, as well as other's who are blogging about their experience with CKD - the information and experiences you offer are valuable and very much appreciated. ~ Yomi
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