More Information

I have been e-mailing with one of my friends (a nurse) who knows quite a bit about kidney disease and dialysis patients. I asked her about the fistula gram procedure that I am scheduled to have on Wednesday morning. She said it is likely that the radiologist will be looking for problems with my fistula and that if anything is found, the surgeon can come right in and fix it (if it is a surgical problem).

I had quite an adventure trying to reschedule last Saturday’s dialysis treatment. Our ABF class at church was having a party Saturday night that we wanted to attend. So, I asked on Tuesday if I could move my appointment up to the morning shift (which is the one that is typically open). To my surprise, they said that the morning shift was full and that they wouldn’t be able to fit me in until the 11:00 shift. That’s a lot better than getting there at 6:00 in the morning, so I did not complain (the party wasn’t until 7:00 Saturday evening, anyway). On Thursday, they told me that there wasn’t a space available to move me on Saturday. I had them check, and they said that they had misread. It seems that my open spot was only available because someone from that shift was in the hospital. I got a call at 6:30 am Friday from the dialysis clinic. They said that they hospital guy had called in and that he was planning to be back on Saturday, so our plans for attending the party were shot. The clinic did not call back until 10:50 am on Saturday to let me know that they had an empty seat and they could take me! I was very excited and then headed over to the clinic to receive my treatment.

The lesson that we learned from this weekend is that we will always sign up with the word MAYBE written beside our name for any event that will be taking place on a Saturday evening. I would have to have someone depend on me being somewhere if I cannot guarantee that I will be going.

Dialysis is still going well. I was underweight on Saturday when I went in. My dry weight is supposed to be 68 kilograms. I weighed in at 67.5 kg when I went in (which was a little low). This led to questions about how much I was eating or whether or not I was sick. I had been eating fine, and was not feeling sick the last couple of days. So, they took off 1 kg at that treatment. Luckily, Jenny brought me lunch, so when I left, I weighed 67.2 kg (which wasn’t too awfully low). We went out to eat for lunch on Sunday, so I am hoping that my weight will be back up above 68 kg when I go in on Tuesday.

Prayer requests for this week:

• Pray that the fistula gram will go well on Wednesday and that any problems that might be going on will be fixed quickly and easily


• Pray that dialysis will continue to go well and that my transplant paperwork will be processed quickly and efficiently.

Thanks for coming by!

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.

Dialysis Continues to go Well

I realized this weekend that I have not updated my blog in about one week, so I apologize for the delay in updates. I have been working pretty hard at my new job at MCI, so I did not have the time last week to send out a new post. I had to fill out lots of new hire paperwork and take several new hire web-based training courses, of which I still have one to complete.

I received my “treatment plan summary” for August and September on Thursday. These summaries are basically a list of everything that they want for me to gain from dialysis and how I am doing in those areas. There is a page from the doctor, a page from the dietitian, and a page from the social worker. Based on the doctor’s report, I did pretty well, especially since I come to every treatment and I stay for the entire four hours each time. Apparently, this is not the case for everyone that has dialysis, so some people tend to score lower. It doesn’t seem too difficult (for me, at this time) to make it to dialysis for all of my treatments, and I certainly haven’t ever run in to the need to leave early. The social worker’s report says that I am coping well with my dialysis and that I have a good support system at home. The dietitian said that my phosphorus was a little higher than it should be, but I already knew that from my lab reports.

I have an appointment with my vascular surgeon on October 27. He is supposed to do an ultrasound of my fistula and see if there are any physical problems that may be causing me to have a lower “access flow” rate. I am also supposed to set up an appointment with a gastroenterology specialist to find out what is causing me to feel nauseated almost every morning of the week. I am waiting to get an insurance card (or at least a temporary card) so that I will be able to give them all of my information over the phone when I set up the appointment.

Please pray for the following:

• Continue to pray that my transplant paperwork will be approved soon and that I will be able to move ahead in the process of getting tested and put on “the list.”


• Pray that my nausea and stomach aches will not be as severe and that God will use the gastroenterologist to help me understand what is wrong and possibly clear up the problem


• Pray for Jenny as she is my support system here and I need her to be strong.

God bless and thanks for coming by today. I’ll try to make more regular updates from work now that I have my schedule figured out a little better. Also, I downloaded the “Blogger for Word” plug-in and that should help with my publishing. I tried to publish from e-mail, and that only caused problems. This plug-in allows me to use MS Word as to compose my posts in (so I don’t end up with too many spelling mistakes).

Recommendation from iKidney.com

Hey everybody. To start off, I'd like to apologize to everyone that receives an e-mail update whenever I update the blog. There were some minor problems last week and it seems that about 6 or 7 e-mails all got sent out at once. So, I'm sorry about that.

I had an interesting experience this week. I was sitting in dialysis Tuesday evening (where I am writing this post now). The Internet was turned on today, so I was checking out my statistics for the blog. I normally receive about 10 visit a day to the site, but for some reason, there were 55 hits on Monday. So, I went to take a look at where all of these visitors were coming from, and I saw a link from iKidney.com.

It seems that Dr. Joshua Schwimmer of iKidney.com was writing an article about blogging and how blogs relate to the medical community. The bottom of the article was a few links pointing the readers out to some informative blogs. Here is what is says:

“The best way to learn about blogs is to read them. There are many excellent blogs out there. If you're interested in exploring the world of blogs (also known as the blogosphere), the following Web sites are good places to start.”

And, right under that, there was a link to my blog! Here's the site:
http://www.ikidney.com/iKidney/Lifestyles/BasicBlogging.htm

So, I guess I need to write to Dr. Schwimmer and thank him for linking to my site and getting the information out about my struggle with PKD.

I realize that this post didn't give much information about me. For those of you wondering, I started work at MCI on Monday. It takes a couple of days to really get started, but I was working this afternoon and I'm glad that I've got the new job. I'm looking forward to a good long career in telecommunications.

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!

Lab Report for 10/09/2005

Sorry that I did not update the blog after my Thursday treatment. Nothing really special went on, and I have been pretty busy at work this last week, so I did not get a chance to write anything. I saw the doctor, and he gave me a prescription for Nexium to help with my nausea. I haven’t had a chance to get that prescription filled yet, but when I do, then I’ll know if it helps.

I received my October lab results on Saturday. It looks like I did not do so well with my phosphorus binders. I am having some trouble remembering to take them with every meal, so I think that is part of my problem. I was also eating a corn-based breakfast cereal, and corn is high in phosphorus. I switched to a rice cereal this week, so I am hoping that will help me out. My hemoglobin (HGB) is up a little bit from last month (which is good, but I am still a little anemic). My creatinine went down from 8.2 to 7.6. I’m not sure what that means, but maybe my kidney was trying a little harder last month. My potassium level stayed the same, but they want me to get it up a little bit so that I don’t have to use quite as strong of a concentration of potassium for my dialysis.

Lab Results: 09/09/2005 Compared to 10/04/2005

TEST NAME	09/09/2005	10/04/2005	UNITS	REFERENCE RANGE
CBC
WBC	4.58	5.27	1000/mcL	4.80 - 10.80
RBC	3.73	3.82	mill/mcL	4.70 - 6.10
HGB	11.8	12.6	g/dL	14.0 - 18.0
HCT	35.8	36.1	%	42.0 - 52.0
MCV	96	95	mcm3	80 - 94
MCH	31.6	33.1	pg/cell	27.0 - 31.0
MCHC	32.9	35.0	g/dL	33.0 - 37.0
HGB X 3	35.4	37.8	%	42.0 - 54.0
PLATELETS	-	190	1000/mcL	130 - 400
RETICULOCYTE COUNT	-	-	%	0.80 - 2.10
BUN (pre)	40	30	mg/dL	6 - 19
CREATININE	8.2	7.6	mg/dL	0.5 - 1.2
POTASSIUM	3.7	3.7	mEq/L	3.3 - 5.1
BICARBONATE	28	29	mEq/L	22 - 29
ALKALINE PHOS	65	83	U/L	40 - 129
AST/GOT	21	28	U/L	13 - 39
TOTAL PROTEIN	7.1	6.8	g/dL	5.9 - 8.4
ALBUMIN (BCG)	4.6	4.6	g/dL	3.8 - 5.2
CALCIUM	10.0	10.0	mg/dL	8.4 - 10.2
PHOSPHORUS	4.6	6.3	mg/dL	2.6 - 4.5
Ca X P PRODUCT	46	63	-	<55
SODIUM	144	141	mEq/L	133 - 145
CHLORIDE	102	100	mEq/L	96 - 108
GLUCOSE	-	-	mg/dL	70 - 105
CHOLESTEROL	-	-	mg/dL	<200
Reference Range is the Desirable Range as specified by the National Cholesterol Education Program Expert Panel.
TRIGLYCERIDE	-	124	mg/dL	<200
Normal Expected Value is the Desirable Range as specified by the National Cholesterol Education Program Wroking Group.
IRON	63	52	mcg/dL	45 - 160
UIBC	181	182	mcg/dL	110 - 370
TIBC (CALC)	244	234	mcg/dL	228 - 428
TRANSFERRIN SAT. (CALC)	26	22	%	20 - 55
FERRIRITIN	-	286	ng/mL	22 - 322
HEMOGLOBIN A1C	-	4.3	%	4.5 - 5.7
HBsAg	Negative	Negative	-	Negative
Please note, methodology has changed from EIA to Chemiluminescence.
HBsAb	-	-	mIU/mL	-
<10 mIU/mL - NON-IMMUNE >=10 mIU/mL - IMMUNE The magnitude of the measured result above 10 mIU/mL is not indicative of the total amount of antibody present.
HEPATITIS C (ANTI-HCV)	-	-	mcg/L	0 - 10
Please note, methodology has changed from EIA to Chemiluminescence.
ALUMINUM UNSTIM	-	13	mcg/L	0 - 10
BIO-INTACT PTH (I-84)	-	70.5	pg/mL	12.6 - 53.5
The Bio-intact PTH (I-84) Assay results are approximately 52% of the intact PTH Assay.
VITAMIN B12	-	-	pg/mL	211 - 911
Verified by Repeat Analysis.
RBC FOLATE (CALC)	-	-	ng/mL	280 - 791
TSH	-	<0.01	mIU/L	0.35 - 5.50
HDL	-	31	mg/dL	-
CLINICAL SIGNIFICANCE NOT ESTABLISHED * Male <35 mg/dL & Female <45 mg/dL suggestive of increased susceptibility to Coronary Arery Disease. * Male 35-55 mg/dL & Female 45-65 mg/dL clinical significance not established. * Male >55 mg/dL & Female >65 mg/dL suggestive of decreased susceptibility to Coronary Artery Disease.
CORRECTED CALCUIM	9.5	9.5	mg/dL	-
Calcuated Calcium is not equivalent to measured ionized calcium
CORRECTED CA X P PROD	44	60	-	-
BUN (post)	12	8	mg/dL	6 - 19
UREA REDUCTION RATIO (URR)	70	73	%	65 - 80

As you can see, the best information is at the bottom of the table (I put it there to be easy to find). My post-dailysis BUN (blood urea nitrogen) is down to 8, which according to the range, is excellent. Also, my Urea Reduction Ratio (how well the dialysis is doing) is up to 73%, and they want to get me eventually up to 80%. But, I have not been using the 15-guage needles at 400 ml/min for very long, so I imagine that the URR will go up again in November when they take my labs again.

As you can see, if you understand more about blood work than I do, I am doing pretty good with my dialysis. The only thing I really need to work on is diet stuff, like getting my potassium a little higher and getting my phosphorus a lot lower. Thanks for coming by to read today.

Nice Tuesday Treatment

I had another easy dialysis treatment on Tuesday. The 15-gauge needles seem to be working really well so far. The only complaint (I guess) that I have about them is that my arm usually bleeds a little bit when the technician puts in the needles. That's not really a problem, considering that I probably lose more blood than that in the tubes that go through the dialysis machine. But, my lab results from September did not show me as being too anemic, so I am not really worried about it.

Speaking of lab results, they took the quarterly blood work Tuesday night. I should be getting back results either Thursday or Saturday. When I get them, you can look forward to another exciting table full of number that not even I understand. In fact, I think I might have one friend (who's name rhymes with Chason Jastain) that might be able to understand what they mean. I know the major points, like potassium and phosphorus, but I don't have a clue what some of the numbers might represent. I am looking forward to seeing my results and being able to compare how am I doing now to how I was in August and September.

I have a couple of prayer requests for this week:

• I am still feeling nauseated several mornings per week. Pray that either the doctor can offer a suggestion to fix this or that I will start to not have this problem soon.
• I will be starting a new job a week from Monday. Pray that my transition will go well and that my last week at my current job goes well, too.
• Pray that my transplant paperwork will continue to process quickly so that I can find out where I am in the process.

Thanks!

New Job / New Insurance

Hey everyone, I was offered a new job yesterday (and I accepted it). To make today’s blog more interesting, I am going to proceed in the ever-popular Question and Answer format.

Q: I hear you have a new job (that’s great). Who are you going to be working for, and what will you be doing?

A: I am going to be working for MCI as a Telecom Engineer II for the Engineering Standards group.

Q: Didn’t you work for WorldCom (now MCI) back in 2002 when you got laid off?

A: Yes. In fact, I am going to be going back to doing the same job that I was doing before in a new and improved group.

Q: What would make you want to go back to MCI after they let you go a couple of years ago?

A: For one, I am going to be receiving a significant salary increase (similar to what I was being paid back in 2002). Also, the job that I am doing now requires very little of me, mentally, and I want to go back to doing something challenging that I enjoy going to do every day.

Q: Why does your blog title mention new insurance?

A: As you know, I have devoted this blog to my Polycystic Kidney Disease, especially since I had to have a radical left nephrectomy this summer. One of the big things that I am having everyone pray about is a kidney transplant. My insurance company will have to pay for part of the cost of the transplant, so my transplant paperwork is going to be held up for a little while after I change jobs so that the new company can agree to help pay for the transplant whenever it occurs.

Q: How do you think everyone is going to like this crazy Question and Answer format?

A: It’s hard to say. I know that sometimes it can be tough to read something that is going back and forth for a long time. But, I feel that I have kept this short, and I hope that it will let everyone feel like they’ve had a chance to sit and talk with me.

Q: Thanks for writing this today. Do you have any prayer requests that we can keep in mind?

A: Sure. 1) Pray that my job transition goes smoothly (I start on October 17). 2) Pray that my dialysis will continue to go well. 3) Pray that I will stop feeling sick in the mornings.

Thanks!