Short Update

I don't know how interesting today's post will be, but bear with me. Though, don't leave me with a bear. I think it would eat me, and that might be bad (for the bear, too).

I had dialysis again last night. The clinic draws lab work from us on the first full week of the month. This happened to be on Tuesday. If you remember from my last lab report, I am mostly concerned about my PTH level this month. PTH is your Parathyroid Hormone, which is: "Parathyroid hormone is the most important endocrine regulator of calcium and phosphorus concentration in extracellular fluid. This hormone is secreted from cells of the parathyroid glands and finds its major target cells in bone and kidney." Last month, it was ridiculously high. And, of course, I am always watching my phosphorus levels.

So, the dietitian was wandering around the clinic verbally telling everyone pieces of their lab work, if they had a problem or had done really well. For example, one of the guys sitting near me always has terribly high phosphorus, and I heard her tell him that he had lowered it to almost a safe level this month. So, as she was speeding past me, I called her over to ask about my PTH and phosphorus. She told me that my phosphorus was around 4 (which is good) but that she didn't have my PTH levels yet. So, she went to look, and she had not ordered the blood work for November. That means that I won't get that lab drawn until Tuesday. So, I have no idea if the Vitamin D shots are helping or not.

The "official" lab report probably won't be ready until Tuesday. Even though they get all of the reports back to their computers by Thursday night, they don't print them out to give to us for a full week. I guess most people don't care, but I would like to see my labs as soon as possible, personally, to better control my health.

They also ran an access flow test last night. This test shows how well the blood is flowing in your access. In the case of an AV Fistula, they want to see a flow rate over 400. Mine has done well on the last two or three tests. Last night, it was 920, which is great. That's a little more good news!

Let's see ... what else is going on? How about some statistics? The people at http://pkdcure.org/ posted a link to my blog in their e-newsletter on Wednesday. I'd say a lot of people must have read it, since I had 78 visitors make 138 page views. They are the 12th highest referral to my web site (in the past year). Of course, the most popular way to visit is "direct" which is likely from people having the site bookmarked. Google is the second most popular way to get to my site. And, interestingly enough, my friend Josh has the third highest number of referrals! Way to go, Josh. Keep up the good linking.

Please pray that I will continue to feel healthy. I've had a few days in the last month or so of not being top notch, and that's never fun. Please continue to pray that God's timing will be fulfilled in me getting a new kidney. And, keep praying for Kala as she goes through her testing.

Thanks for visiting today!

Hemodialysis Patient Report Card for Nathan - Sep 2006

Hello everyone. I am posting today to give you my latest lab results. I am posting directly from blogger.com today, because I am going to attempt to insert pictures to show you exactly what I see on my lab report.

Here it goes:
My Albumin was 4.6. Albumin is the protein in the blood that helps fight infections and aids in healing.


My enPCR was 0.6. This is the Protein Catabolic Rate; it suggests if I am eating enough fish, chicken, beef, and other protein foods to meet my daily needs. The dietician said that this number is probably dilluted because I am still producing urine.


my eKdrt/V was 1.5. This tells how well my dialysis treatment is working and if I am receiving enough dialysis to clean my blood. Notice that it has been going up since July (when I started using my fistula instead of the catheter).


My potassium was 4.2. Potassium is a mineral needed for normal heart rhythm and muscle function. High potassium can make your heart stop.


My corrected calcium level was 9.0. Calcium is a mineral needed for health bones and muscles. The calcium level was a little high back when I was taking more Phoslo. Now that I am hardly taking any, my calcium levels have gone back to normal.


My phosphorus level was 3.3 (which, by the way, is wonderful). Phosphorus is a mineral needed for healthy bones. High phosphorus can damage the heart and blood vessels by making them stiff, and can weaken the bones. The dietician said that 3.3 is wonderful, and that I do not need to worry about it being slightly below the "shaded area" of normal.


This final chart shows my average fluid weight gains over the past six months. This is a new chart to our lab packet, and it fairly interesting. I don't know how well you can read it, but the top line (bold) shows the average WEEKEND fluid weight gains. The smaller line, on the bottom, shows the average monthly fluid gains. As you can see, my fluid gains have been increasing, but I also recently got my dry weight moved up to 71.5 kg, so that number should balance back a little lower next month.

The other number on my lab report was hemoglobin, which was 12.1 (goal is between 11 and 12). This means that I have not been that anemic, and that I need to talk with the doctor about why I might have been feeling tired more often lately.

Also, they ran an access flow test at the treatment on Thursday. My access flow tested at 1166. This is very good. I am glad to see that my fistula is behaving correctly. Hopefully, it will soon be easier to stick, and that will make my treatments go easier.

Please continue to pray for Josh's test results. I want to follow God's will with gettng a new kidney.

Donate to the PKD foundation via Kelly's walk:
http://www.pkdcure.org/site/TR?px=1219283&pg=personal&fr_id=1455&et=VtS8dK17LcihGFwU2iBdpA..&s_tafId=6823

Thanks for coming by!

Saturday and Tuesday

So, I have been chronicling my experiences with extra sticks recently. It seems my fistula is not working the way that I would prefer it to. Last week, I had 4 sticks on Tuesday and 3 sticks on Thursday (just to bring you up to speed).

On Saturday, I was lucky and only had to be stuck with two needles. This seemed to be a good thing, since they wanted to run an “access flow” check on my fistula. This is a quarterly test that they run at the dialysis clinic to see how well the blood is flowing inside your fistula. They tell me that a rate over 400 ml/min is preferred for an AV Fistula. My previous fistula never scored much over 300, and it eventually died. I was hoping for a better score with this one. Unfortunately, there was a problem, and they couldn’t run the test on Saturday. I guess one of the needles was not quite in the right place, because it kind of leaked a little bit the rest of the night. They stopped the bleeding, but I don’t think it was quite right.

On Tuesday, they had to use three needles before they could get me. Keep in mind that the same technician has been sticking me for about 7 straight treatments at this point. But, the needles went in and we were ready to try the access flow again. This time, it ran just fine, and the machine reported an access flow around 640 ml/min (or close to that). That is a wonderful number. I am very thankful that my fistula is flowing well, even if it is not sticking well. The extra needle this week was due to clotting again.

I received my monthly lab reports on Tuesday as well. Here they go:

Albumin: Protein in the blood that helps fight infections and aids in healing

August 2006 - 4.5 (goal is 3.8 to 4.5)

Your albumin (blood protein) is normal

enPCR: Protein Catabolic Rate; suggest if I am eating enough fish, chicken, beef, and other protein foods to meet my daily needs

August 2006 - 0.59 (goal is greater than or equal to 0.8)

Your protein catabolic rate (protein intake) is low

The dietician suggested that I try eating eggs for breakfast, so I will.

eKdrt/V: Tells how well my dialysis treatment is working and if I am receiving enough dialysis to clean my blood

August 2006 - 1.26 (goal is greater than or equal to 1.2) – this is up a tiny bit from last month

Your eKdrt/V is in the goal range.

Potassium: A mineral needed for normal heart rhythm and muscle function. High potassium can make my heart stop!

August 2006 - 3.8 (goal is 3.5 to 6)

Your potassium level is normal

Corrected Calcium: A mineral needed for healthy bones and muscles

August 2006 – 9.4 (goal is 8.4 to 9.5)

Your corrected calcium is normal

Phosphorus: A mineral needed for healthy bones. High phosphorus can damage my heart and blood vessels by making them stiff, and can weaken my bones.

August 2006 – 2.9 (goal is 3.5 to 5.5)

Your phosphorus is low.

This is the lowest I’ve ever seen my phosphorus. The dietician said it is still within normal range as long as it is above 2.5.

Hemoblobin

August 2006 – 9.6 (goal is 11 to 12)

Your hemoglobin is low. This is called anemia. You may need your EPO or iron changed.

The dietician did raise my EPO levels.

There was also a new chart showing my average fluid weight gains for the last six months. My overall average was less than 3.0 liters per month. The weekend fluid gains were between 3.0 and 3.5 liters on a monthly basis. This was well within my goal of staying under 3.5 liters (since that is about all my body can tolerate having removed in one treatment).

I hope the new format of the lab report wasn’t too confusing. If you have any questions, please feel free to comment or e-mail. I have to go now. Jenny hasn’t seen much of me all week and is jealous of my blog getting all this attention.

414 Flow Rate

Last night at dialysis was the quarterly test of access flow rates. The technician told me that they do the testing on a regular basis, and since I am using the large needles now, they can go ahead and test me. If you remember, I had to get a fistula revision and a perm-cath because my flow rate was under 400 back in October. So, the test was all important for me. When it was finished, the technician told me that I was running at 414, which was great news. I also found out that the highest flow rate she had ever seen was 2000. That information suddenly changed my thinking. I had thought that maybe 500 was the top, so 350 was not so bad. But, if you can have a flow rate over 2000, then my paltry 350 was pathetic. Now that I am over 400, I hope that my fistula will continue to develop for as long as I am on dialysis.

I have to go to the hospital in about an hour to have my perm-cath removed. So, after two months, I will not have tubes hanging out of my chest! I am sure that having it removed won’t be the most pleasant thing I do all day, but I imagine that it won’t be worse than having the neck catheter inserted or removed. So, if you read this before 11am Friday, then know that I am on my way to feeling like a normal person again. If you read it after 11, then I am probably back at work sans-catheter. And, if you are reading this on Saturday morning, then I am enjoying a long, hot shower, so don’t call and bother me, lol.

There is not really too much more going on. I have one more treatment (Saturday) when I will be recording my blood pressure. I am on Diovan, Toprol XL, and Norvasc, at the moment. I will send another two weeks worth of BP data to my cardiologist on Monday, and we will see what she wants to do from there. My pressure has been down more often, but I still see it in the 150s from time to time. I don’t want it to drop too low, so the medication is a delicate balancing act.

Thanks for reading!

Tuesday, February 7, 2006

Well, it’s Tuesday morning and, if you have been reading along, you will know that I still have the perm-cath in my chest. The nephrologist did not come by dialysis last week (at all), so I am hoping that he will be by at least once this week. If I get to see him, then maybe he can schedule an appointment for me to have this catheter removed and let me go back to my dialysis-normal life.

I used 17-guage (small) needles the first week that I went back to my fistula. Then, last week, I was up to 16-guage needles. Today, I am wondering if they are going to finally put me back on 15-guage needles (the largest size we use at our clinic). Once they have used the 15-guage needles on my fistula at full speed for a couple of days, then they will test my flow rate to see if my revision put me over 400. My old rate was under 300, which was not what they wanted. The higher the flow rate, the better possibility you have for dialysis. So, it should be back to larger holes in my arm today (which is always great, don’t you know).

I joined a few dialysis e-mail groups last week. Now, every time I open up my Inbox, it is filled with messages from people who are on (or know people on) dialysis. There has not been a lot yet that has been useful to me, but I am hoping to learn more from this community of people that are going through the same experiences as I am. That is kind of why I write this blog. I want to share my experiences with others and help them to see what I go through and how God helps me through it.

Speaking of which, please continue to pray about my transplant. If God does not have healing planned for me, I would love to get a new (well, used) kidney. Since my approval is complete, all I am waiting for now is for my potential donors to get tested and find out if someone can donate. I know that God has a perfect plan laid out for me; I just have to wait and see what it is. Help pray that I am patient during this waiting.

Thanks for coming by to read today! Enjoy your dialysis-free evening.

Weekend Update

I am writing to give everyone an update on my dialysis over the weekend. I went in Thursday evening (on Thanksgiving). We had about half of the normal number of patients there that night. I guess everyone had either gone out of town or had moved their treatment time up to an earlier shift so that they could have dinner free. Jenny and I had scheduled to have lunch with her family so that I would be able to go to my regular treatment. Saturday's treatment went just fine too. There were no problems (which is always nice for me).

My pulse is starting to go down. I was between 100 and 110 at the end of my last two treatments. During Saturday's treatment, it actually was in the 70s and 80s during most of the evening. I think that the change in medication is probably doing my body some good. Hopefully there will not be any problems with it. The cardiologist is going to check me again in a week or so. I am still wearing the heart monitor that she gave me. I am trying to submit the scans every few days (even though it hasn't asked me to). I am not really sure what she is going to learn, but hopefully it will be something useful about my heart.

My fistula surgery is scheduled for Monday afternoon. My flow rate is less than 400, so the surgeon is going to attach my fistula to another vein in my upper arm (at the elbow). He is also going to have to put in a temporary dialysis access catheter in my chest. This surgery is supposed to help my dialysis be a lot more effective. The only downside is that my arm will probably hurt for a week or so, and I will have to have the catheter for about a month.

Please pray that the surgery goes well tomorrow. I will update the blog later (maybe Tuesday) to let everyone know how it went. Thanks for reading!

Surgery Update

Okay, I have an update on my fistula surgery. I talked to the doctor at dialysis last night and he said that he recommends the fistula surgery. He said that it should help get my access flow rate over 400 and that is what I need to get the best dialysis possible.

So, on Monday afternoon, I will be going to the hospital to have some surgery on my arm. You can look at my last post and see that the surgeon is planning to open me up by the bend in my left elbow in order to connect my fistula to the “cephalic vein” (if I remember correctly). He will also have to put in a temporary chest catheter to facilitate dialysis while my fistula heals (probably for one month or so).

Dialysis went well yesterday. There were not any problems. My pulse was about 120 after the treatment, but I have just started on my new medications, so I did not expect any changes for a week or two.

Please pray for the following:

• Pray that my fistula surgery will go well on Monday
• Pray that the chest catheter will go in successfully and that there will not be any problems with it (they can be prone to problems)
  

Thanks for coming by to read. I also appreciate your prayers on Monday afternoon.

Isaiah 65:24 (New International Version)
Before they call I will answer; while they are still speaking I will hear.

More Surgery?

I have a lot to update everyone on, so today’s post might go a little long. This is just a warning in advance in case you don’t have a lot of time to read right now. You can always come back when you have more time … thanks to the Internet saving everything.

My treatment Saturday went well. Another four hours of dialysis with no problems. My heart rate at the end of the treatment was 120+ again, but they let me go home when I promised that I would see my cardiologist on Monday (which I did).

Monday afternoon, I saw my cardiologist. She rattled off a bunch of heart disease words that I was not familiar with about what might possibly be causing my racing pulse (both seated and after dialysis). She decided to take me off of Norvasc (which is for blood pressure) and to put me on Toprol (which is for blood pressure and also has the side effect of slowing the heart rate). She also gave me a 30-day heart monitor to watch my heart rate for the next month. The only bad thing about this thing is that I have to wear it and it’s not exactly the most comfortable thing I’ve ever had on. The monitor records your heart all day long, and then you transmit the results at the end of the day to the monitoring company. There is a button you can push when you have a problem so that it will be marked on the test.

Earlier on Monday, I saw my vascular surgeon to ask about my dialysis access flow rate. The last test at the clinic has my flow at around 330, but they really want it to be over 400. He did a sonogram on my arm, and saw exactly what the fistulagram earlier this month showed: that the vein in my upper arm is too small to support good dialysis. He did find another vein (above the elbow, but farther around the arm) that is large enough to support dialysis. He wants to do a second surgery to connect my fistula to that new vein. He wants to do this on Monday. I have dialysis tonight, so I will check with the doctor and see if he thinks that this surgery is a good idea. Doing surgery on my access will require that I have a temporary catheter put in my chest to facilitate dialysis while my fistula heals. (That is not a fun thing, from what I understand). So, I am going to check with the doctor and find out what he thinks, and if he says to go ahead with it, then I will be having another surgery on Monday (I’ll let you know what I find out).

Okay, to illustrate what is being proposed, I thought I would break out my camera phone and Microsoft Paint and give everyone an idea of what the surgeon wants to do.

This first picture is of my left arm (where the fistula is).

The next picture is the same image, with some lines and text put on it to help explain what you are seeing.

The blue line is about where my fistula is now (you can compare the two pictures for a better look; you can even see it in the upper picture once you know where to look). The green line is a larger vein in my upper arm. The yellow line is where the surgeon intends to cut me open and connect the fistula to the upper arm vein.

So, for prayer this week, here is what I have:

• Pray that the cardiologist will be able to learn something from the heart monitor and that we will be able to do the best thing for my heart
• Pray that whatever will be best for me (God’s will) will be decided about my fistula. I have desires, but I do not want them to get in the way of God’s will. I would prefer that whatever He wants done to my arm gets done.

Thanks!

Weight Upped due to High Heart Rate

Welcome to the blog. It’s Friday morning at about 9:00am, and I thought I’d give you all an update as to what is going on with my dialysis. As you might have guessed from the post title, my heart rate was up at the end of dialysis again Thursday night. Fortunately, it was only in the 160s, not over 200 like it was last week. They gave me some oxygen, had me drink a grape soda, and kept me in the clinic for over an hour after my treatment was over to attempt to stabilize my heart rate. Now, I am all for safety, but I did not feel bad at any point after my treatment. The nurse was worried that I would have shortness of breath or dizziness, but neither of those was a problem. I just had a high heart rate. So, when my seated and standing heart rates were both 120 beats per minute, they let me go home (at about 9:45 pm). The nurse also agreed to move my dry weight from 68.0 kg to 68.5 kg (which is about 151 lbs). The last time I had problems after my treatments, raising my weight solved the problem. I guess I’ll know for sure on Saturday.

I called the vascular surgeon’s office again on Thursday. The nurse said that she would have to pull my chart (same thing she told me Tuesday) and that the doctor would give me a call. This time, I gave her my cell number instead of my work number, but the call never came. I guess he’s busy. They say that “no news is good news,” but I would like to know what is going to happen to my arm.

I received a letter from the Baylor Regional Transplant Institute the other day. They wanted me to sign my HIPPA consent form and read their Notice of Health Information Practices. I guess this means that they are moving along in the transplant process. Hopefully, I will hear more soon from them. (This is good news!)

They tested my access flow again last night. The purpose behind this is trending. If they take an access flow test on a regular basis, they can see if it starts to slow down or speed up too quickly so that they can find problems before they get too bad. My flow yesterday was 331 ml/min. I asked someone to explain access flow, and here is what I learned. The access flow is the blood flow rate in my fistula (all the time). This is different than the dialysis flow rate of 400 ml/min. They would prefer that my fistula would flow faster than 400 all the time. This is why I want to know what the vascular surgeon plans to do for me.

I got my insurance card in the mail, and gave the nurse a fax-in prescription form. With my new insurance, they will only pay for maintenance medications if you get them from their mail-in pharmacy. So, they provide a form that the doctor can fax in to request your medications. I gave that form to the nurse, and she said she would get it to the doctor next week when he gets back. I looked up my prescriptions, and all but one is a Tier Two medication. The pharmacy has three pricing tiers for their medications, and I have one that is in the highest tier (3) and the others are mid-range. Mid range medications cost $50 every three months, and the third tier medication will cost $80 for 90 days. This puts me at paying $380.00 every 90 days for my medications (not to complain, because the insurance company will be paying $913.97 for that same time period). So, if you find a dollar on the ground, give it to me, so I can give it to the insurance company!

That’s about it. You might have noticed that I played with the layout on the website. I took off the rounded corners and made the two columns take up the entire width of the screen. No use having blank sides, when it is possible to take up the entire screen real estate. Hope you like the new size (I know I do).

Intervention Radiology Exam

I saw my vascular surgeon today. He ran the sonogram machine over my arm a few times, to look at it. It looks very much like the sonogram machines that you see on ER when they are checking a pregnancy, except that in my arm, there is only blood, no babies. The doctor said that he would have to schedule an appointment for me with radiology to have an Intervention exam.

I did not get a lot of information from him about this exam, so I looked it up on the Internet. The University of Virginia called the exam a Fistulagram, and had the following to say:

A fistulagram is an x-ray study of your fistulas and this procedure can detect problems such as a clot or narrowing. Early detection and treatment can improve your fistula’s performance and limit future complications.

They describe the procedure as follows:

The Interventional Radiologist will insert a needle into our fistula, very similar when accessing your graft for hemodialysis you will feel warm in your hand, arm, and chest, and may get a metallic taste in your mouth. These sensations only last 10-15 seconds. Several x-ray pictures are needed to complete the test. These pictures are reviewed by the Interventional Radiologist and, if necessary, the findings discussed with your referring doctor. If there is an area of narrowing or clot present in the blood vessel that can be helped by balloon angioplasty, stint, clot dissolving medications, or a clot breaking device, this may be done at this time. A fistulagram usually takes 2-3 hours to complete.

I will be having this procedure on Wednesday, November 2. I have to be at the hospital at 7am and will have to procure a ride home (so don’t be surprised if I call you this week). The procedure does not sound like it will be difficult or that there should be many problems. Hopefully, they will be able to find out why my access flow is less than 400, and maybe they will have a solution that is non-surgical. If they cannot fix the problem, it will give the surgeon a good idea of where to go if I need a surgical solution. He said that possible surgical solutions might include disconnecting a small vein from the fistula in case it is decreasing the available pressure.

Thanks for coming by to read. I hope that this was informative. If not, please let me know.

I Received my Access Flow Report

I received my access flow report at dialysis last night. I had to request a copy of it since I am going to see my vascular surgeon tomorrow morning. I guess they normally send you to one of the vascular surgeons that are affiliated with their doctor’s group who can access all of the records from their internal system. I did not see any reason to go to a new doctor (over an hour away) when I have access to the surgeon that put in my fistula and knows it best. Here are the results:

09/13/2005: Result 337
10/08/2005: Result 302
10/11/2005: Result 309

Unfortunately, for an AVF (arterial-venous fistula), the expected rate for access flow is greater than 400. As I have said before, I am not sure what the surgeon is going to do to fix this problem, but I’ll know more tomorrow.

Dialysis went well for me last night. I weighed in at 71 kg (which is 3 kg higher than my normal dry weight). I guess I shouldn’t have had that refill on my drink at lunch. I should probably pay more attention to what day of the week it is before I go out to eat next time.

Thanks for coming by. I’ll have an update from my surgeon on either Thursday or Friday, depending on how much time I have.

Access Flow Not Running Well

They tested my access flow again on Thursday. They are looking for a value greater than 400, but I tested at 288. The nurse said that I need to be seen by a vascular doctor and have my fistula looked at. I had an appointment with my vascular surgeon (the guy that built the fistula in my arm) during the middle of November. I moved it up to October 27. He should do an ultrasound on my arm in order to take a look at the fistula and see how it looks. I think that he will be looking for blockage or poor circulation. I still have a strong pulse in my fistula both at the surgical site and all the way up to my elbow. I am not really sure how I could tell if there was a problem or not, but apparently the access flow test is a good indicator that mine is not working correctly. Hopefully, the vascular surgeon will have some good news for me.

I woke up Saturday with an upset stomach. I did not really feel nauseated, but my stomach was certainly not happy. The nurse at dialysis gave me the name and phone number of a gastro-intestinal doctor that can check me out. I have been having some stomach problems for the last month or so, which isn't really that exciting to deal with on a day-to-day basis. I woke up at midnight on Sunday feeling nauseated, and did not get a good night's sleep. I missed church this morning, but I was feeling okay by 10:30, so we went to Sunday School. I had Jenny buy me some Pepto Bismal, but it looks like it contains aspirin, so I can't take it too often (since I am on a blood thinner at dialysis).

I start my new job Monday morning at MCI. It looks like my new insurance will pick up then (I was on COBRA this weekend). I will have to find a chance to talk to my new boss about what is going on with me medically so that he can move my work schedule up to 7a - 4p instead of 8a - 5p. Thanks for coming by to read. Sorry that I did not get a chance to update the blog after my Thursday treatment. Thanks for coming by.

Access Flow Tested on Tuesday

They tested my dialysis access flow (again) on Tuesday. This is the second test. The test consists of switching the direction that my blood flows (pulling from the normal input side, and replacing blood in the normal pull side). The first test had my fistula working at about 300 ml/min. The second test (Tuesday) was again about 300 ml/min, though maybe slightly more. They are looking for a value above 400. I was told that they would test it again on Thursday and if it is still low, they will want to talk to my vascular surgeon (who is scheduled to do a sonogram of my arm the next time I see him).

I will be going to dialysis again tonight, and I hope that my access flow will be working better. The nurse said that possible problems could include how I had been stuck with the needles, how well I was doing overall that day, or any number of things. That is why she wanted to test it more than once.

I'll let you know if I learn anything new tonight at my treatment. Until then, have a great day!