Sunday, December 24, 2006
1And it came to pass in those days, that there went out a decree from Caesar Augustus that all the world should be taxed.
2(And this taxing was first made when Cyrenius was governor of Syria.)
3And all went to be taxed, every one into his own city.
4And Joseph also went up from Galilee, out of the city of Nazareth, into Judaea, unto the city of David, which is called Bethlehem; (because he was of the house and lineage of David:)
5To be taxed with Mary his espoused wife, being great with child.
6And so it was, that, while they were there, the days were accomplished that she should be delivered.
7And she brought forth her firstborn son, and wrapped him in swaddling clothes, and laid him in a manger; because there was no room for them in the inn.
8And there were in the same country shepherds abiding in the field, keeping watch over their flock by night.
9And, lo, the angel of the Lord came upon them, and the glory of the Lord shone round about them: and they were sore afraid.
10And the angel said unto them, Fear not: for, behold, I bring you good tidings of great joy, which shall be to all people.
11For unto you is born this day in the city of David a Saviour, which is Christ the Lord.
12And this shall be a sign unto you; Ye shall find the babe wrapped in swaddling clothes, lying in a manger.
13And suddenly there was with the angel a multitude of the heavenly host praising God, and saying,
14Glory to God in the highest, and on earth peace, good will toward men.
15And it came to pass, as the angels were gone away from them into heaven, the shepherds said one to another, Let us now go even unto Bethlehem, and see this thing which is come to pass, which the Lord hath made known unto us.
16And they came with haste, and found Mary, and Joseph, and the babe lying in a manger.
17And when they had seen it, they made known abroad the saying which was told them concerning this child.
18And all they that heard it wondered at those things which were told them by the shepherds.
19But Mary kept all these things, and pondered them in her heart.
20And the shepherds returned, glorifying and praising God for all the things that they had heard and seen, as it was told unto them.
Merry Christmas everyone. It has been a few days since I posted, so I thought I would give out a quick update. Last week I mentioned that I had the nurse turn my dialysis machine up from 400 ml/min to 450 ml/min. That means that the machine can now clean about 12.5% more blood during each treatment. Since the doctor was not there this week, I spoke to the Nurse Practitioner that was doing rounds at the clinic. I had her write in my orders that my machine should run at 450 ml/min (whenever possible). My fistula has been working properly, and that is always nice. I have enjoyed having the machine run faster and getting more blood cleaned during my four hours. Hopefully, my arm will continue to cooperate and I will continue to receive better treatments.
No new news about Kala, yet, for those of you still wondering. Her tests are scheduled for January 2 and January 18. After that, we should hear from the transplant committee and be able to set up a surgery date. Then, I will switch from dialysis to "post-transplant" doctor's appointments, all the time, at least for a couple of months. Hopefully, you will be able to enjoy my "I had to give another urine sample today" posts as much as you have enjoyed the dialysis postings!
That's about it for today. I have been getting quite a few e-mails from my readers (all over the world!). It is nice to hear from you every time you write. And, if I have not replied to you, that is not because I am ignoring you. It is because I have not gotten to you yet in the e-mail queue. And, you can always post comments on the blog (which everyone can read). I will try to reply to you (if you leave an e-mail address).
Thanks for coming by today! Enjoy your Christmas with your family.
Friday, December 15, 2006
First off, I got an e-mail from Kala this week. She has her two appointments scheduled, for January 2 and 18. So, hopefully, once the transplant people get her results from the 18th test, we should be able to set up a date for the surgery. This is great news, I'm glad that things are moving forward.
I had dialysis on Thursday night. I got a good stick, which is always nice. About half-way through my treatment, the technicians turned the machine of the guy across from me, and I saw that he was running at 450 ml/min. Now, I had been previously told that it would not do you any good to go faster than 400. When the nurse came to check on me (like they normally do), she asked if she could do anything for me. I told her that I wanted to run at 450 like that other guy and get a better dialysis treatment. She was able to turn the machine up to 440 (my fistula wouldn't let it go any faster). She said I need to talk to the doctor and have him up my prescribed dialysis to 450 so that they always set it higher. I was able to get a 1.73 Kt/V (as opposed to the 1.4 that I normally have been getting).
The Kt/V is how well your dialysis is doing. The K is the amount of waste removed, the t is the time you dialyze, and the V is your blood volume. The goal for most patients is 1.4 or above. The only way to increase this number is to increase the K or the t, or to decrease your V. Since my volume is not going down, and they are unlikely to give me longer dialysis treatments, the only thing I can do to get a better dialysis is to remove more waste. Since my flow rate is around 1300 or 1400, I don't see any problem with running the machine faster than 400 (as long as the needles end up in the right places). The faster the machine runs, the greater the amount of my blood that gets cleaned, and the higher my K value becomes, thus increasing the Kt/V. That's it for the math lesson for tonight.
I had the rest of my "transplant evaluation" tests today. I went in for an EKG, and echocardiogram, and a nuclear stress test. These were to complete my yearly evaluation to stay on the transplant list. The EKG is a simple test where they hook up electrodes to your chest and check the electrical activity of your heart for one minute. The echocardiogram is basically a sonogram done on your heart. You lay there, and they "look" at your heart with sound waves on a special machine, similar to how a new mother gets her unborn baby examined. The final test is the nuclear medicine stress test. They inject you with a radioactive dye, and then run some scans of your heart (for 15 minutes). After this, we hooked up another EKG and got a baseline reading. I then started walking on a treadmill. Based on my age, weight, and height, they wanted my heart rate to get to 163. The treadmill got faster and increased its incline every couple of minutes. Once I reached 163 (after 12 minutes), they injected some more nuclear medicine. Then I had to run for 30 seconds longer as they took one last EKG (which they had been doing every minute during the test). After the running was over, they gave me some juice and let me cool down. Then, they had me do one more scan in the machine that checks the radioactive dye in your heart. I almost fell asleep on the table, since you just have to lay there very still and quiet in a dark room.
The doctor went over my results with me. I have a mitral valve prolapse, and have known this for about six years. I get it checked every year or so, and it has never been a problem. Mitral valve prolapse is a heart problem in which the valve that separates the left upper and lower chambers of the heart does not open and close properly. So, instead of blood flowing only one direction, a little bit of blood "regurgitates" backwards to the chamber it was coming from. This is a very common heart condition. The only thing I have to do for it is to take antibiotics before going to the dentist. This keeps plaque from breaking off, getting into your bloodstream, and getting stuck down in your heart (that's bad).
It seems that my prolapse has gotten worse over the past year. Last year's test revealed that I had a "moderate" prolapse. This year, the doctor said that it was severe. He said that eventually, I will need to have valve replacement surgery. This sounded extreme, so I had him explain it to me. He said that they will trim the mitral valve, and then place a plastic ring around the outside of the valve, to make it a little smaller. This way, the blood will not be able to flow backwards. He said that it is a very simple surgery. I asked him what he wanted to do, seeing as I was facing a potential transplant.
He conferred with the kidney transplant team, and they decided that since I was in no immediate danger, that the valve replacement is not currently necessary. He said I will probably need to do it in 5 years or so, but by that time, I should be used to all of my anti-rejection medications and not be having any problems with the new kidney. He said that I am going to need to follow closely with my regular cardiologist on my mitral valve, and that it will probably need to be checked more than once a year. That is fine, since it means they can catch it before anything terrible happens.
Well, it looks like tonight's post was long, sorry about that. Please continue to pray for Kala and I as we wait on her tests in January. And, pray that my mitral valve will not cause any problems for a long, long time. Thanks for coming by!!
Wednesday, December 13, 2006
It is time once again for the monthly lab report. That's right, boys and girls. Every month, Uncle Nathan posts his dialysis "patient report" for all the world to see (and taunt). And, since I figured out how to use the scanner at work, I usually post the graphs that the dietitian prints out for us to show us our progress (or not).
First off this month is Albumin. The definition page tells me that Albumin is a protein in my blood that helps fight infections and aids in healing. My albumin was 5.0. The goal is between 3.8 and 4.5. The dietitian said that I am VERY healthy, based on this number.
Next up is the enPCR. This is the protein catabolic rate, which suggests if I am eating enough fish, chicken, beef, and other protein foods to meet my daily needs. The dietitian continues to remind me that this number may seem unnaturally low because they do not calculate the protein output in my urine. My number this month is 0.59. The scale says you should be above 0.8. But, she also told me that I am obviously doing fine and to just ignore this number (as always).
eKdrt/V: Tells how well my dialysis treatment is working and if I am receiving enough dialysis to clean my blood. The goal is greater than 1.2, and I am at 1.46. As you can see from the chart, I have been receiving enough dialysis for the past six months, which is great. I can really feel the difference when I am getting repeated good treatments.
Potassium is a mineral that is needed for normal heart rhythm and muscle function. The goal is between 3.5 and 6, and mine is at 4.2, which is slightly below the half-way point. This is good, since too much potassium can make your heart stop. I am not having any problems with potassium in my diet, which is nice, because I enjoy potatoes.
Calcium is a mineral needed to make healthy bones and muscles. You get it from things like milk, even though I am not allowed to have any dairy products (because of the phosphorus). I did not take any of the calcium-based phosphorus blockers this month, and my number dropped down to 9.3. The goal is to be between 8.4 and 9.5. I have been slightly higher in the past, but I think that was due to taking the other phosphorus blockers.
Speaking of phosphorus, my level was 5.5 this month, which is right at the top of the range (3.5 to 5.5). I think that may also be related to me not taking any of the calcium-based phosphorus blockers. I have two blockers. The calcium-based ones are to take before meals, and the others are for after meals. I almost always take the after meal pill, but did not take the pre-meal pills at all last month. I think I will opt for a slightly higher calcium level than to risk a higher phosphorus level.
Finally on the list is the average fluid weight gains. If you cannot see the chart clearly because of its size, I think you can click on it to see it full-sized. The chart is accurate through November. It looks like my average monthly fluid gains dropped dramatically, even though my weekend gains were about the same as the last six months. I do not know if there was an error in the calculations, or maybe my one lowly kidney was working a little extra in November. Either way, I am within my safe ranges, not having edema or any other fluid-gain problems.
The dietitian did not print out a chart showing my PTH, but she said that it had gone up again. It seems that the range is between 200 and 400 or something similar to that. In October, it came up at around 800 or 900, so they decided to give me Vitamin D to bring it down. In November, it showed that it was 100, so they wanted to take me off the Vitamin D. I told them that it might be a false reading and that I should stay on a small dose. The doctor agreed, and kept giving me Vitamin D. This month, the PTH was around 500, which is high, so they are going to increase the dose of Vitamin D. I am glad that I argued for them not to take me off of the medication completely. I had watched the number jump high and low every other month and was able to make the connection that I need at least some Vitamin D. I think now, they just have to figure out how much I need every month to maintain a balance.
My hemoglobin this month was 14.2. The goal range is between 11 and 12. They said that they are going to stop giving me Epogen, which is the hormone replacement that prompts my body to make red blood cells. They told me that it is shown that there is no help to be above 12, I guess the marked benefits don't climb as quickly after 12. That seems strange, since you are much higher than that if you do not have a kidney disease. The doctor was not there on Tuesday night, but if he comes on Thursday, I will try and talk to him to see if I can understand why they want to keep my hemoglobin down (and keep me feeling more anemic).
So, as you can see, my lab reports are overall good, and they have been for at least the last six months. I am glad that the doctor has figured out what I need and has gotten everything in balance. Of course, now that I have it all worked out, I am getting ready to sign up for transplant surgery.
Kala sent me an e-mail, letting me know that she has the first of her two tests scheduled for January 2. After that, it is one test, and then the official "OK" from the transplant committee.
Continue to pray for patience (from me) as we wait for test results and committee meetings. Please pray that I continue to stay healthy so that when it is time to schedule the surgery, that there are no health-related delays.
By the way, I have been getting several e-mails from readers recently. It is absolutely wonderful to hear from everyone that reads my blog. There are some interesting stories, and I am working on replying to you, if you wrote to me. I always enjoy hearing from people, and it is neat to see that there are actually people that stumble across the blog that stop and read it.
So, send me an e-mail if you get a chance, or just comment directly on the blog. I would love to hear from you. Have a wonderful day (and thanks for reading such a long post).
Monday, December 11, 2006
This is sounding like a fairly clear answer to prayer. So, unless God presents a different option, it sounds like we will be setting up some surgery for late January or early February (depending on everyone's calendar). For me, it will be a week or two in the hospital, followed by daily lab work and doctor's visits for two weeks, then that slows down as time goes forward. They want to be VERY careful with the new kidney, so they check your vitals a lot at the beginning. That also helps them get you on the right amount of anti-rejection medication. Apparently, the medication dosages get adjusted a lot in the first month or two, until your body balances in its new condition.
Please continue to pray for Kala. Pray that her tests will go well in January and that there will not be any surprises. Also pray for me that I will stay healthy and will be ready to accept the kidney when the time for the surgery arrives. Pray for Jenny, that she will be able to put up with me and will be a good help-mate when it comes time to drive me to the doctor every day. And, pray for my job, where I will be gone for a while. Pray that they will be able to hold my position and that the kidney transplant will not interfere, too much.
Thank you for your continued prayers. I will let you know more as I know more!
Thursday, December 07, 2006
I went in Monday and had a chest x-ray done and some blood drawn. Then, I went to eat lunch and have my physician's consultation. The nurse did the EKG (I think, the one with electrodes all over your chest and they scan your heart for about a minute). Then, I talked with the PA. She had my lab results back already, and said that everything looked great (except for the CBC, and the machine was broken, so they couldn't take it). She said that she wished that other patients took care of themselves as well. I have to fax my CBC over from dialysis (which should be ready tonight). I also had to send over my TB test results. But, I should remain on the list for one more year (based on what I have seen so far). I still have to have a stress test done on my heart on the 15th, but I am not worried about that.
They drew our labs on Tuesday (the 5th). I should get back the results tonight, since I need to send them to the transplant people. The charts probably won't be ready until next week, but that's normal. I am not expecting to see any problems, as my labs have been going great for at least the last six months. Thank you for your continued prayers in that area.
In other news, the transplant committee will meet on Friday (the 8th) to discuss Kala and see if they want to let her donate a kidney. It does not sound like there will be any problems. Please pray that the committee comes to a conclusion quickly and that we find out so that we will know what to do next.
Thank you for all of your prayers. Keep my health in your prayers, as you have to stay healthy in order to qualify for a transplant. Keep praying for Kala, that she will not be worried or nervous as Friday and the weekend get closer.
Thanks for reading!
Thursday, November 30, 2006
I got a letter Tuesday evening from the Dallas Pre-Transplant group letting me know that they had scheduled a couple of days worth of tests for me at the beginning of December. I have some lab work, some consultations, and a stress test set up on the 4th and the 15th. I have never taken a stress test before, so that should be fun. The other tests I have done before, and they are not a problem.
I am looking at these tests as being a good sign. This is the first time (after I have had a donor tested) that the pre-transplant group has contacted me to do some further testing. I guess that all of Kala's results have been good, so they are going to run me through a couple of things again just to make sure that I am still a good match to her. That is good news, and I am glad to hear it. Hopefully everything will be in order and the transplant can keep moving forward.
Other than that, everything is going well. I think my allergies decided to revolt this afternoon. I just started sneezing this afternoon and haven't been able to quit. I guess the body can produce mucus even if you aren't taking in a lot of fluid. I will have to try and get some Benadryl to save my nose. We don't have a lot of soft tissue at work, so it's starting to take it's toll on me.
Please pray for the transplant committee. They are going to make their decision on Kala next week (I believe) to see if she can donate her kidney. Please pray for my tests that they will go quickly and there will not be any problems.
Oh, and totally unrelated, but it snowed here today. By snow, I mean some snow fell from the sky. It melted as soon as it landed, but it was in the sky! Winter has arrived (for a day or two).
Wednesday, November 22, 2006
Please continue to pray for Kala's committee results. Also pray for me, that I will not place false hope in this decision, but that I will continue to keep trusting God and placing my hope in Him. It is sometimes difficult to focus my energies the right way, but I always want God to be first, regardless of how things go around me.
Friday, November 17, 2006
First off, let's hear about Kala. For the new readers, Kala has volunteered to be tested as a potential kidney donor. She is the third such person to go through the process. As of our last report, she seems healthy enough to donate, and her tests are going well. Recently, she met with the social worker, who said she was an excellent "donor candidate." I believe Kala had her MRI on Monday. The machine is loud and uncomfortable, but she said that the test went well. As of Thursday afternoon, the MRI results were not back, so we are still waiting on that. The transplant committee meets on Friday, December 8. We should know something from them by probably the Monday or Tuesday after that.
All in all, the news from Kala is good to hear. I am glad that all of the tests and interviews are going well and that no problems have been uncovered. I also appreciate her kindness to be willing to donate a kidney to me.
In other news, I have been getting more e-mail recently from other Polycystic Kidney Disease (PKD) sufferers (er er er ers). [<-- trust me, that would be funny if you could hear me say it.] Anyway, I have a few e-mails from other PKD people, and they are all at least interested in what I have been going through. I am SLOWLY trying to get back to everyone, so if you wrote to me, don't feel bad. Your message is in my Inbox, waiting it's turn to be replied to. I have not been feeling well this week. I have had a lack of appetite, as well as some minor nausea since about Monday. Today (which is Friday), I have had a headache most of the afternoon, which is unusual for me. Hopefully, I will get to feeling better soon. It's not any fun to be sick. I have an interesting comment I would like to throw in. There is another blog that I have been reading where the author asked that we pray for healing for someone's cancer. It seems that after the latest scans, most of the tumors have gone away without medical intervention. The author has encouraged prayer towards miraculous healing (in whatever manner that God chooses). This made me think about God's faithfulness. I have been reading about faithfulness, and thought I would share a little from what I have been studying. We have faith based on either who GOD is or on what GOD does. Isaiah 55:8-9 says - 8 "For my thoughts are not your thoughts,
neither are your ways my ways,"
declares the LORD.
9 "As the heavens are higher than the earth,
so are my ways higher than your ways
and my thoughts than your thoughts.
Hebrews 13:8 says -
8 Jesus Christ is the same yesterday and today and forever.
The summary of the lesson was that faith based on who GOD is frees Him completely to show us what He can do!
Please continue to pray for me. Pray for a miracle healing. Pray that the right donor will be found to match for me. Those prayers are not exclusive. Pray that God will choose the method that will bring Him the most glory. I am just here as an instrument. I want to be used in any way possible.
Thanks for reading again today. As always, tune in next time for more fun!
Thursday, November 16, 2006
My Albumin (the protein in the blood that helps fight infections and aids in healing) was 4.9, which is just high of the "normal" range. That's great! Nothing bad there (as normal).
My enPCR (the Protein Catabolic Rate) was below normal at 0.71. This is actually normal for me. It suggests if I am eating enough fish, chicken, beef, and other protein foods to meet my daily needs. The dietitian said that this number is probably diluted because I am still producing urine.
My eKdrt/V was 1.48, which is pretty good. This tells how well my dialysis treatment is working and if I am receiving enough dialysis to clean my blood. It's down a little from the past two months, but it's nothing to worry about as long as it stays in the target range.
My potassium level was a completely normal 4.5. Potassium is a mineral needed for normal heart rhythm and muscle function. High potassium can make your heart stop, though that has not been a problem for me.
My corrected calcium level was 9.8. Calcium is a mineral needed for health bones and muscles. I think the calcium level was a little high because I took more Phoslo this month so I could enjoy some more cheese. Fortunately, that is not a dangerously high level, and it should be back to normal next month.
Last but not least is PHOSPHORUS. My worst enemy, lol. My phosphorus level was 4.1 (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. I had feared that taking the Vitamin D treatment for my high PTH would mess up my phosphorus, but it did not do that, which is nice.
Speaking of which ... they did not order the PTH lab on the 7th, so that had to draw it on the 14th. Hopefully by this time next week, I will have some results for that (to see if it is better).
Finally, come the average fluid weight gains. Pay no attention to November, as it has not finished yet. You can see my highest was in August (it was very hot that month). But, since then, I have kept my fluid weight gains under control in September and October, even going a little lower last month (on average). The top line represents weekend gains, while the bottom line is overall monthly gains (averages).
So, life is good in the dialysis lab-report world. Keep praying for good numbers every month.
I have more to report, but I think I will wait until tomorrow. Only one long set of posts per day, I think.
Thanks for viewing! You guys are great. I have been averaging way more hits to the blog this week than I have been in a long time.
Monday, November 13, 2006
I've got a short post for today. I got an e-mail from Kala this weekend. She wanted me to know that her MRI was scheduled for Tuesday (November 14), and that she would like some prayers for herself. Kala said she was a bit claustrophobic.
For those of you that do not know, MRI means Magnetic Resonance Imaging. It is a noninvasive, non-x-ray diagnostic technique based on the magnetic fields of hydrogen atoms in the body. An MRI provides computer-generated, three-dimensional images of the body's internal tissues and organs. To do the test, you lie down on a table, and the doctors slide you into a tube. If memory serves correctly, the inside of the tube is not too much wider than the table (slightly broader than your shoulders). So, it is a tight squeeze. And, the test is not quiet. The machine bangs around a lot while the magnets look at your organs.
So, if you will pray for Kala for her tests on Tuesday, we would all appreciate it. Thanks!
Friday, November 10, 2006
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!
Tuesday, November 07, 2006
For those of you who are reading this for the first time, let me give you a quick overview of who I am. I am a 28-year old guy living in Texas that was diagnosed with PKD about 8 years ago (or so) when I was in college. I lived in harmony with my slowly-declining kidneys until the beginning of 2005. I was sick, then I had a minor stroke, then I was on blood thinners, and then I was sick again. It ended up with my left kidney swelling to about 15 lbs (about 6.8 kg) and having to be surgically removed. My previous kidney function of around 20% suddenly dropped to less than 10% with the removal of one of my kidneys. I started dialysis in August of 2005, and got put on the transplant list in January of 2006. Since then, I have been continuing dialysis while running my friends and family through the donor process. I am on my third "potential" candidate. Also, I have moved up high enough to be called by then hospital if they have a close enough match come in to the system. This has happened once, but I did not match, so I continue to do dialysis and wait.
The greatest help that I have had through this has been my faith in God. As a Christian, I feel that God gives me the strength on a day-to-day basis to keep on living. I have faith that He has a plan for my life and that He has kidney ready for me, at the right time. If you are not a Christian, don't worry, because I don't really fill my blog with preaching. But, if you have questions, please e-mail me and I'll help you with anything I can. That goes for PKD info as well as Christianity.
Now that I've given you an introduction (even though I expect you ALL to go back and read all of my old posts) - I'll give a more normal update. I have dialysis tonight. Since it is the first Tuesday (after the first Monday) of the month, tonight should be lab work. I hope that my phosphorus has not gone up too high since they started giving me Hectorol. The Hectorol is to help control my high PTH. The side effect is that it can raise your phosphorus, which is the only number on my lab report that I have really had a hard time keeping in control. It's not easy when you enjoy cheese as much as I do!
So, thanks for coming by to read today. Please pray that Kala's testing will continue to go well. She let me know that she doesn't have TB, which is good. Pray that God will have the best kidney for me at exactly the right time, and that the surgery will go well when we get to that point. Please pray for my continued health so that when the kidney arrives, I won't be too sick to take it. And, finally, keep praying for Jenny, who has to put up with me on a daily basis.
One last thing, if you want to learn more about the PKD foundation and what they do, please visit: http://www.pkdcure.org/. From there, you can read about the disease, and learn about ways that you can help (most of which are financial).
Enjoy your day!
Wednesday, November 01, 2006
Today is Wednesday, November 01, 2006, and I just got an e-mail this morning from Kala, my next potential donor. Her testing was scheduled to begin yesterday, and she has a few results already.
Here is her e-mail to me, and I will explain anything strange at the end:
“I got the results from my GloFil test, I passed it with flying colors. And I asked about my creatanine (misspelled I'm sure) levels and was told they were completely normal. I am sure there is much lab tests that will take awhile to get the results. The consult with the kidney doctor (nephrologist) she said she found me an acceptable candidate. The transplant surgeon said the same thing. I would be a candidate for laparoscopy version of the surgery unless the MRI I have not had yet shows I have too many blood vessels and that is very rare. The psychologist must have liked our talk because he started talking to me about when I would want to do the procedure. So, unless something strange comes back from the labs or shows up on the MRI, everything looks good. They said since my last two things can't be done until 11-14, my results would be presented to the committee in the one meeting they will be doing in December. They did not tell me when in December. So, if everything is a go, and you have not already received a cadaver kidney, January is the month surgery could be done. Again, I must emphasis that not all results are in but everything that took place today went swimmingly well.”
Now, for some explaining …
The GloFil test is a test of kidney function. They have you get very VERY well hydrated, and then you are injected with a radioactive dye. The technician then measures how much of the dye is removed with your urine over the course of four hours. The amount removed is calculated with body weight and age and probably some magic numbers to determine what your kidney function is. It looks like Kala’s is pretty good (and that’s a good thing). Second, the level the that the test measures is spelled C-R-E-A-T-I-N-I-N-E (for all of you perfectionists out there).
If I remember correctly, they drew over 20 vials of blood when they were typing and matching me for all of the testing, so I know it will take a while to run all of the blood work.
That is good news from the doctors and the psychologist. I’m glad to hear that some crazy person didn’t’ volunteer to give the “gift of life.” So, we can all look forward to a week from Tuesday to see if the rest of the tests come out well. And, as you can see, they committee will meet in December and we will probably know by January if Kala is a go.
Of course, if they wait too long, I will have to get re-tested. They update all of the recipient’s labs every year, and I did mine in January of this year. So, I will be in the hospital in January for one reason or another. I certainly would prefer to be receiving a new kidney, but it’s all in God’s hands.
Please pray for Kala as she gets tested. Please pray for me that I will continue to be healthy. And please pray that God will let us know, clearly, who should be my donor.
Thanks for reading!
Thursday, October 26, 2006
First stop, my new donor candidate, Kala, has gotten her first set of tests set up. She sent me an e-mail saying that the majority of her tests would be performed on Tuesday, October 31. There were a couple of tests that they couldn’t fit in that day, so they will be doing them on November 14. And, if I remember correctly from Josh, it takes two or three weeks after getting all of the work done to come up with results. That puts the results being available at the earliest at the end of November, so I do not expect anything until early December.
The next piece of good news happened last night. Our church had its annual Fall Festival for the children of the area from 6 – 8. After Jenny and I finished working at our class’s booth, we left to go home. My cell phone rang, and it was Baylor Hospital in Fort Worth. They had a potential kidney for me and needed me to head to Baylor in Dallas to get my blood drawn. We got to the hospital around 9:30 or 10:00 pm, and they drew 13 vials of my blood. They had to run tests on it (four hours worth) so they told me to go home. Unfortunately, the call at 4:00am was to tell me that this kidney and I were not a good match. But, the good news is that I am now at the calling point on “the list.” So, if I understand everything correctly, the next time a potential match comes up, they should give me a call again (and again until a good match is found).
I have called my transplant coordinator to make sure that I understand everything correctly. Hopefully she can explain where I need to go from here and perhaps she can tell me my exact position on “the list” for the area.
Please pray for Kala as she gets her testing done. Please also continue to pray that God will bring me the right kidney at the right time, no matter where it comes from.
Tuesday, October 17, 2006
Last month, I tried something new. All of the responses that I got were good, so I am going to do it again. I scanned my lab report, and I am going to put in the charts themselves into my blog posting today. If this doesn't work for you, let me know, and I'll see what I can do to fix it.
My albumin (the protein in the blood that helps fight infections and aids in healing) was 4.6, which is slightly above the recommended number. The dietician likes it just where it is.
My potassium (A mineral needed for normal heart rhythm and muscle function) was 4.3, which is excellent (as you can see). I have not had a real problem with potassium since I started on dialysis.
My 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.) level was only 4.2 this month, which is great. As you can see, back in May, my level was too high, but I think it is under control now.
My corrected calcium (A mineral needed for healthy bones and muscles) is normal at 9.0. This goes along with the phosphorus and means that I am eating right.
My parathyroid hormone level is extremely high (at 744). I do not have the explanation of what the PTH is (I forgot to scan that page). They thought my level was down in July, but not the dietician believes that it was a false low (given how high it was in October). The treatment of high PTH is to take Vitamin D shots called Hectorol. The only problem with the Hectorol is that it can cause elevated Phosphorus levels ... so we shall see where those two numbers go.
My hemoglobin A1C is normal at 4.5. I think this has mainly to do with the fact that I am not a diabetic (so my body controls it's blood sugar correctly).
They don't have a chart for it, but my hemoglobin was 13.8 (which is normal enough). They are going to keep my epogen shots at the same level to keep my hemoglobin normal (which helps keep me from being anemic).
I don't know how well you can read this chart, as it ended up a bit smaller than the others (it is a full page chart, where the others start out at 1/4 of a page).
This shows my average fluid weight gains. My monthly average stayed between 2 and 3 kilograms, which is great news. My weekend rates were higher, but that is to be expected since you go 3 days between treatments instead of the normal two. But, overall, I am doing well with my fluid.
The only other thing to report on my labs is that my access flow rate was 980-something. This is the rate at which blood flows in my fistula. The clinic prefers an access flow rate over 400 in patients with fistulas, so I am in great shape. This is either the second or third good flow rate I have gotten with this fistula, so that means it is working much better than my original one. I am glad that all the extra work and surgeries paid off.
In other (kind of long) news, I talked to Josh (the potential donor) on Sunday evening. He said that the transplant coordinator had one more meeting that she was attending on Friday, and that she would let him know this week how it went (but she wasn't hopeful, due to his higher creatanine). I have one more potential donor that has already taken the initial blood type test. I guess I will be sending her an e-mail as soon as I find out about Josh for certain.
I guess that's about it for this week. Please continue to pray for the donor that God has lined up for me. Pray that they will remain healthy and that the eventual surgeries will go well for both of us. Thank you all for reading today!
Monday, October 09, 2006
Josh sent me an e-mail stating that the transplant coordinator would be taking his test results to the committee on Friday. However, based on the results, he will probably not be a good match. It seems that his creatinine levels are a little bit higher than they want to see in a possible donor. He is not in any danger, but they don’t want to donate kidneys that are less than perfect. He is supposed to hear back from her this evening with a firm answer, but it sounds like he will not be donating.
So, we don’t have to worry about me suddenly becoming allergic to onions or having the immense desire to read more comic books (both of which would be fine, Josh, in case you are reading this). Now, after I hear the official word from the transplant coordinator, I will have to contact the next person that volunteered to get tested as a donor. I believe that I have one more person that has done the initial blood testing, so she will be the next victim of the vampires at the kidney donation center.
In other news, things are going fairly well. The dietician raced by on Saturday, but she did stop long enough to tell me that the lab report would be available on Tuesday and that my phosphorus levels were still looking good. It’s always good to hear that I have a good report coming, so I will keep watching my diet and taking my medications just like I have been.
I have been feeling well recently. There has been very little nausea or light-headedness. I have had some evenings with slight fevers after dialysis, but nothing over a few tenths of a degree over normal. And, I normally feel better after a good night’s sleep, so that’s good. I think that I am comfortable with my 71.5 kg dry weight, as I usually end up pretty close to that after every treatment and have not cramped more than once or twice (and even then, it was minor).
I received a comment yesterday from another PKD suffer about her blog. It seems that she is new to knowing about the disease and is a big advocate for telling other people about it. I’ve read a few of her early posts, and she was amazed that hardly anyone knows about a disease that affects over 600,000 Americans (and 12.5 million people worldwide). I will have to read a few more of her posts, but if you want to check them out, head to:
Thanks for coming to visit today. Hopefully you will hear more from me sooner rather than later!
Tuesday, October 03, 2006
Like I said, my health is going along in a fairly steady manner. Today is the first Tuesday of the month, so they should draw lab work this afternoon when I get to dialysis. I do not expect any surprises, and hope to see all of my numbers still sitting in the “good” zone like they mostly have been for the past four months. Keeping my number in the normal range is probably the best thing that I can do for my continued health while I am on dialysis. Most of the solutions for good lab results are fairly simple, and it would basically be my own fault if they started to slip now.
As mentioned, I have not heard from the transplant coordinator yet on the status of Josh’s testing. I gave her a call on Friday and left a voicemail. If she does not call back today, then I will call again tomorrow and leave another voicemail. I imagine that after a few of those, I will get moved up in the priority list. I understand that she was on vacation last week, so I am not too much in a hurry, yet.
I cannot think of much else that is new going on. Jenny is enjoying her work as a substitute teacher. She moved from full time teaching so that she would be more available to spending time with me in the hospital, should I need to go for any reason. She says that there is much less stress involved now that she knows she will not be responsible for lesson plans during an extended absence (the type you might expect for a kidney transplant).
Our health benefits are being renewed at work this month. Some of the things that we can expect are possibly lower out-of-pocket costs on prescriptions, though I doubt I will personally benefit from those savings. They are also going to offer short term disability to all employees for free (currently, it is a paid-for benefit). I am sure that just means that long term disability will just be more expensive (right now, I pay for both, and I will continue to get both under the new plan). I don’t think that much else is changing. It doesn’t look like our monthly paycheck deductions are going up too much, and that is always nice (especially when you are trying to save money for large purchases).
That’s about it for today. Please continue to pray that God’s will is being done with Josh’s kidney transplant test results. I want to follow Him, even if He says to wait. Please pray that my health will continue to do well, so that I can continue to work and enjoy my few activities.
Tuesday, September 26, 2006
It has been over a week since I last posted. Not too much has been going on lately, which is nice, I suppose. My arm is still sore from the infiltration on the 7th. There is some minor bruising above one of the needle sites. I think the tech pinched my arm while she was taping it up on Saturday, and it left a bruise. My arm does not hurt too much, except for about an hour or so after each treatment. Most of the yellow coloring has gone away, which means that most of the blood has been reabsorbed into my arm. Thankfully, it was not a bad infiltration, so there was no damage.
I had mostly good treatments last week. Tuesday’s treatment ran a little slower because I don’t think the technician that stuck me has quite as good of an aim as some of the others. There are three technicians that I really like, and two or three more that do a decent job. The lady I had on Tuesday gets the needle in, but it must always be brushed up against the vein wall because it can’t pull blood quite as quickly as normal. Thursday and Saturday, I had some of the better technicians, and my machine was able to run at 400 ml/min.
My fluid intake has been pretty good lately. I had my dry weight raised to 71.5 kg, and I think that has helped a lot. My poor remaining kidney doesn’t do too much work when my dry weight is too low, so I try to get it raised up every once and while just so the kidney doesn’t get too lazy.
Well, it’s probably time for me to do some work today. I just wanted to shoot out a quick update to everyone and let you all know that I am doing well. I have not heard from the transplant doctors yet about Josh’s kidney, but when I do … you guys will hear everything.
Please continue to pray that God’s will be done in that situation. And, continue to pray that I have good health and good dialysis treatments.
Thursday, September 14, 2006
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:
Thanks for coming by!
Tuesday, September 12, 2006
My friend Josh has begun his testing process. He went in to the doctor’s office on Wednesday and Thursday of last week, spending his entire day being poked and scanned. There are a few tests that he still has to send in and a couple more appointments to take care of, and then his portion of the testing will be complete. From there, all we have to do is to wait and see how they like his kidneys, and if I will like one of them.
Read it: http://joshotrades.blogspot.com/2006/09/one-weeks-time.html
My friend Kelly (who lives in Minnesota) is going to participate in a PKD walk (it’s kind of like a Race for the Cure, if you are more familiar with that). 85% of the donations raised in the Walks go directly to pay for research for a cure to PKD (I’m guessing the rest goes to cover administrative costs). Her goal is $220, and I know you can all give a little bit to help her reach it. Check out her site, and make a small donation (even $5 or $10 would help).
Now, it’s back to me, personally. Today is Tuesday, and I have another dialysis treatment today. I had my monthly blood work done last week, so I should see the results today. I am hoping that my phosphorus will still be in the safe range, which would be nice. Please pray that those results will all be in the “normal” range.
I got two sticks on Saturday, with a new technician (new to me, not to being a tech). He was able to get the needles in quickly and easily, and the machine ran at 400 ml/min for almost the entire four hours. I am glad that there are now three technicians that have had successful sticks on my upper arm fistula. This is good news for me, since not all the same technicians work every shift that I am there. I now have greater choice when it comes to getting my needles put in.
I want to thank everyone that has been praying. Keep praying that God’s will is going to be done concerning Josh’s kidney. If it is not the kidney that God has planned for me, then I do not want it. I want to follow Him in this decision. Please pray that my treatments will continue to go well and that I will get good sticks at each treatment.
Thanks for coming!
Thursday, September 07, 2006
He has to do a chest x-ray, an abdominal sonogram, get his Glofil test done (to test kidney function) and have a bunch of blood drawn. He also needs to have several doctor consultations (with the nephrologist, the surgery team, the social worker, and the psychologist). Once all of that craziness gets done, they will let him and I know if he is a valid candidate to give me his “extra” kidney.
Please pray for Josh this week as I am guessing that all this testing is going to be nerve-wracking. I think it would make me kind of nervous to be potentially giving up part of my body to a friend.
As for me, life continues onward. I had another treatment on Tuesday, but the sticks did not go too well. A different technician asked if she could take a try at sticking me, and I decided to give her a chance (since my fistula seemed to be behaving better recently). She put in a needle, but couldn’t quite get it to pull, so she called over one of my more reliable technicians. She removed that needle and stuck me with two good needles. The machine was able to run at 400 ml/min, so I am glad that she got me stuck.
They drew our lab work on Tuesday, so I should know by next week how well I did with my phosphorus balance. I was kind of low last month, so I tried to do a little bit better balancing my diet this month. I also ate bacon and eggs for breakfast most days of the month, so I can see if my protein levels went up at all.
Please pray that my labs will turn out well and that everything will go according to God’s plan when it comes to Josh’s testing. I want His will to be done in the kidney transplant, no matter how long I have to wait. Thanks!
Friday, September 01, 2006
Here is the web site where you can make donations for her walk:
Kelly and I became friends back in 1990 at Kimmons Junior High School in Fort Smith, Arkansas. We had many classes together (including Gifted and Talented) over the years, and both graduated from Northside High School in 1996. Kelly got married and has moved up north. We recently got to see each other again at our 10-year high school reunion.
I would encourage everyone to go to her site and make a donation for the walk. The PKD Foundation needs all the money it can get, and I would love for her to meet her goal (or even to surpass it).
If anyone else wants to get involved in a PKD walk, let me know. There are walks all over the country (including locally in Dallas). I can get you information if you would like to participate.
Thanks for checking out Kelly’s site (and donating, if you feel led). I was extremely touched by her wanting to help out in this way.
Thursday, August 31, 2006
I got some e-mail this week from a reader in Saint Louis, MO. She asked me about my gall bladder and about blogging in general. I gave her all the information that I knew about my gall bladder problem (based on what she asked). I also pointed her to http://www.blogger.com/ and told her how easy it was to get everything set up and then to pass out the link to the ATOM feed to your family and friends so that they could get your updates.
It’s always good to hear from new people who are reading my blog. In fact, today, I got an e-mail from a lady in South Africa. She nominated my blog for BlogDay 2006. I’m not normally the kind of person that participates in things like that, but I am glad to be nominated. If you would like to read her post, it is here: http://cooksister.typepad.com/cook_sister/2006/08/blogday_2006.html
Now, it is time for the updates on my health. On my last post, I mentioned that I had been getting treated at 400 ml/ min. Well, I haven’t been quite as lucky this week. I went in for my treatment earlier on Saturday, and they only got the machine to run at 350 ml/min (which isn’t that bad, but not that great either). On Tuesday, my needles went in great, but for some reason, we could not get the machine to run faster than 300 ml/min. It was having problems with the arterial pressure. I am guessing that the needle was too close to the wall of the fistula. Hopefully, that will be corrected this afternoon at my treatment.
Last week, I was supposed to have a fasting lipid panel on Tuesday. They did not draw my blood for the test because they did not know if I had fasted or not (despite the fact that I told them that I had). So, they said they would do the test another day, and I advised that they do it Tuesday. So, I had my blood drawn on the 29th for my lipid panel. Maybe they will have the results back today and I can ask about them. If I find anything out, I will let you know.
Other than that, there’s not too much going on. I have some blood work to get back (too see how my cholesterol is doing). I have not yet heard from my friend that is being tested for transplant. Perhaps I will send him an e-mail today and see what is going on.
- That my machine will be able to run at 400 ml/min for the best possible treatment
- That my friend Josh will get tested and that we can find out if he is a match for donation
- That my next few dialysis treatments will be uneventful
Thanks for coming by to read today!
Tuesday, August 22, 2006
The last you heard from me was on Wednesday the 16th. I’ve had two more treatments since then, and they both went well. I got two sticks on Thursday and two sticks on Saturday, and the machine was able to run at 400 ml/min on both days. 400 is the speed that is preferred. It is as fast as they dialysis center prefers to go, and gives you the best possible treatment. The faster your blood can be pulled, then the more blood that can be processed in four hours (that makes sense, right?).
Thank you to everyone that has been praying for good sticks and good treatments. Please keep it up. I would love to have a couple of good weeks in a row (for starters). And, I’d like to see my next flow rate test be just as high as the first one (they take an average to set your baseline).
I saw my cardiologist on Friday. She said that I am doing well, and she wants to see my lipid results to see I still need to be taking Lipitor. She also swapped my beta blocker for a different beta blocker, hoping to change some of the side effects. She said that as long as my blood pressure and heart rate stay in the “healthy” range, then I shouldn’t need to change my medication again soon. The only problem would be if my blood pressure drops again and my heart rate goes up. Then she would have to recommend a more invasive procedure. I did not have her explain as I hope that my current medication will continue to keep my numbers in check.
So, I have a treatment this afternoon, and I have been fasting all day for my lipid panel. Jenny is going to bring me dinner, so that will work out. I just hope that they are able to get a good stick without having the needle primed with saline to start. I’ll have to tell the technician to stick, draw blood, flush with saline, and to then stick the second needle. I think that will work and should satisfy any problems that I might have with clotting. I haven’t seen any clotting during the last two treatments, which is always nice.
Please continue to pray for:
- good, easy sticks for each treatment (only two sticks is preferred)
- that the machine can continue to run at 400 ml/min each treatment
- that my lipid panel will have good results
Thanks for coming by to read! It’s short because it’s full of good news
Wednesday, August 16, 2006
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.
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.
Thursday, August 10, 2006
I am here at dialysis tonight, and I have a few minutes, so I think I”m going to update my blog. It is Thursday, August 10, and I have been to two treatments since I wrote to you last. Let me tell you how it's going.
Tuesday night, it took four sticks to get my treatment started. The technician, who does a great job, got the first needle in with no problems. She stuck it easily, and got “the flash” right away. But, because they were drawing labs that night, she did not dilute the line with saline. She spent about five minutes trying to get in the next needle, and it ended up that the area was clotted. She had to pull the needle out and find a new location. She spent another five minutes or so looking for a spot, and finally got a replacement needle in place. Unfortunately, by this time, the first needle that was inserted had become clotted. So, she had to remove it and find a new location. She went ahead and drew my labs, and then put in saline to dilute the line so it would not get clotted, too. The fourth needle was successful, and we were able to do the treatment. The machine ran at 300 for a while, but they had to turn it down to 270 after an hour or so.
So, now let me bring you to Thursday. Tonight was only three needles. The first went in easily, and was diluted with saline right away. The second needle went in easily, but pulled a clot. I think there must be several clots hiding under my skin just waiting to get out on a nice friendly dialysis needle. So, it only took about 30 minutes to get me ready, and then we got started. The machine was started at 300, and we bumped it up to 350 after an hour. It has been running successfully at 350 for about an hour now, which is great. If the stick goes well on Saturday, then I will go to 400 (which is the fastest that they like to run the machine). 400 ml/min helps you get the best possible treatment available.
They drew labs on Tuesday, so I should have the report next week. I think I have been doing well on my diet, so I want to see if all of my numbers are in range. The one that causes me the most problems is the phosphorus. Last month, it was a little low. So, maybe this month, I will be back in the middle of the range.
I had a friend ask me about Josh. He is the guy that has volunteered to be tested as a kidney donor for me. As of today, I have not heard anything new. It took about two weeks after my dad was called before he got his packet of test information. So, I am guessing that they are processing a pile of paper work for Josh, and that he will have his packet in the next week or so. I'm looking forward to his test results.
Please pray that God will prepare the kidney that he has for me, from whomever it may come. Pray that Josh's testing will go quickly and easily. And, please pray that my fistula will behave and not have so many clots (that require re-sticks).
I've got 45 minutes left on the machine. I'm going to watch “Who Wants to be a Superhero?” on the SciFi channel. So, you guys have a good night, and I'll give you more information as I get it!
Monday, August 07, 2006
The second needle was a bit more of a problem. She poked around, but it seemed that all she was able to find was a sticky mess of clotted blood. So, she thought she would try a third location. This was not altogether pleasant, but I wanted to have dialysis, so I let her continue to look for a spot to stick my fistula. Sadly, by the time this needle was properly placed (and only barely at that), the first needle had become clotted. By this time, it was about 5:30. I told them that I would just prefer to go home and come back to try again tomorrow. They charge nurse scheduled me for a 4:30 appointment on Friday afternoon and I went home to ice my arm. It did not bruise, though it still is sore today (Monday).
So, I had 3 needles on Thursday, but they just didn’t work. I went in on Friday, and had a different technician. She tried an entirely new area of my fistula and was able to get the needle to flash right away. Since the area was new, there was not any fear of coming up with clots. She is still using the same place on the lower half of the fistula, so it is at least a little more scarred over (which makes the needle stick slightly less noticeable). The treatment ran Friday night at about 250 ml/min to start, and then up to 300 ml/min for the rest of the treatment (I think).
I came back for dialysis again on Saturday (even though I had only gained about 1.5 kilos). The same technician from Thursday was there again, so she stuck me again. She put the needles in about the same places as she had used on Friday night, and they both stuck. The upper needle gave her a little trouble, and she had to move it around inside the fistula a little bit to get it right down the middle of the lane. The treatment on Saturday ran at 300 ml/min for the entire time, which is better. The best treatment that they give at our clinic runs at 400 ml/min using the 15-gauge needles. So, I just have to let my fistula grow its way up to 400 ml/min, and I should be okay. That, and I need the fistula to start accepting needles better.
Here are some prayer requests for this week, if you don’t mind:
- Pray for my friend Josh. He has volunteered to have his kidney tested as a possible donor. He has also told me that he’d be willing to go in for an experimental treatment. You can read about that here: http://abcnews.go.com/WNT/Health/story?id=2243837&page=1
- Pray for the technicians at dialysis. Please pray that they will be able to find two good spots on my fistula to stick in the needles.
- Pray that in addition to the good sticking, that we will be able to run the machine at 400 ml/min for an optimal treatment.
I’m hoping for two good weeks worth of treatments in a row. Thank you for coming by to read today. If you look over the ABC news article, don’t panic. I have not talked to any doctors about this, and I do not even know if they are testing it in the Dallas area. If they are, I will talk to the transplant team and see if they would recommend something like that for me. I know I would enjoy the possibility of no drugs (and keeping the kidney longer).