With the other news I have passed along recently, I have neglected to keep you up to date on my day to day things.
To start, here are the dialysis weights I have been seeing since the twentieth of this month:
20 Sept
Starting Weight: 104.9 Kg
Water Removed: 2.00 Kg
Ending Weight: 102.9 Kg
22 Sept
Starting Weight: 104.9 Kg
Water Removed: 1.70 Kg
Ending Weight: 103.2 Kg
25 Sept
Starting Weight: 105.5 Kg
Water Removed: 2.30 Kg
Ending Weight: 103.2 Kg
27 Sept
Starting Weight: 105.8 Kg
Water Removed: 2.70 Kg
Ending Weight: 103.2 Kg
If you remember, my ideal dry weight is 103.50 Kg's; and each session listed, we have failed to hit that mark. The nurses and dialysis techs don't know why that is. The session is set up properly to hit the desired target weight, but it keeps going over that number. Today, I asked that we go for 103.8 Kg to see if we might actually hit the target. The result? 103.2 Kg's. I can't even hypothesize a why.
My latest weekly labs came back today, and I am "a model dialysis patient" with maintaining my labs properly, according to the center dietician. They are:
Albumin: 4.6 g/dL (NR 4.0 g/dL or Higher). My Protein in "Very Good!"
Hemoglobin: 11.3 This is low due to my poor RBC production [as regulated by my failing kidneys].
Calcium Corrected: 9.9 mg/dL (NR 8.4-10.2 mg/dL). My Calcium is "Good."
Phosphorous: 4.4 mg/dL (NR 3.0-5.5 mg/dL). My Phosphorous is "GREAT!" (Dropped 0.5 from last week).
PTH Intact: 101 pg/mL (NR 150-600 pg/mL). My Parathyroid is "Very Low."
Potassium (K+): 4.3 mEq/L (NR 3.5-5.5 mEq/L). My K+ is "Good."
URR (Uremic Reduction Ratio): 74% (Need 65% or Higher). This means that the dialysis is approximately 74% effective in cleaning my blood each session.
So, aside from the PTH numbers, I am doing pretty well with the dialysis.
My day to day hasn't really changed much. I continue to be exhausted the day of dialysis, then awaken feeling a bit stronger the next day. Not much change in that at all.
My headache is still improved over the pre-dialysis levels. Right now I am averaging 3.4 T3 usage per day. This has even included a couple more days that I took only one, then two T3's. The headache gets pretty good on and after dialysis; but then dissipates on the off days. I told my doc about this and, while he seemed pleased to hear this news, he remains skeptical that the headache was solely caused by the advancement of the kidney disease. I, on the other hand, have little doubt that the now 34 month long headache was ONLY caused by the disease.
My appetite remains better. Food is starting to taste like food; at least it is once in a while! ;o)
And that's all for now. I am forgetting things that I wanted to write, but that is nothing unusual these days. So, I will sign off!
Good Health to All!
ScottW
Friday, September 28, 2012
Friday, September 21, 2012
21 September 2012--Great Transplant News!
Yesterday I received great news in the mail.
This afternoon, I received more great news from a phone call.
Here is what I received in the mail:
This afternoon, I received more great news from a phone call.
Here is what I received in the mail:
So, what exactly does all of that mean? Well, it simply means that I am through to the next step in the Transplant process. I am on the "inactive" recipient list while I continue doing the workup tests. As you see on the last document, my first scheduled things are on 09 October. I have to schedule the Dental Exam and the Colonoscopy. On the colonoscopy, patients are not generally required to have this until they are 50. Seeing that my 50th birthday is coming up in January, the surgeon thought it prudent to go ahead and get one done. Plus, I haven't had one in years; so it really is best.
Then this afternoon, I received a phone call from my IHC Transplant Coordinator, Mayra, with some outstanding news.
My antibody test came back with a result of 00%--that's right, zero percent. This is great news because this means that I have zero resistance to human tissue, making me the ideal candidate in this area. This backs up my decision to not allow re-use of the dialyzer (in dialysis) from treatment to treatment (because re-use builds up antibodies in your blood).
Additionally, the four tests listed above will complete the requirement for transplant!
So, I can have all of my testing and procedures done in a very short time and be on the active Transplant Recipient List as administered by UNOS (United Network for Organ Sharing) within three months, or so!
Plus, I can now start to ask for possible living donors to step up and begin the testing process.
In this, the potential donors are under no financial obligation for the testing; aside from travel expenses (airfare, gas, lodging, etc. if needed), food, lost work time and other miscellaneous costs, all hospital, surgical and testing costs are covered by my insurance a/o Medicare. The same goes for the living donor that is chosen. Their surgery and hospitalization are covered 100%.
So...two FANTASTIC days of news!
On to the final testing...
Good Health to All!
ScottW
Thursday, September 20, 2012
19 September 2012
Another long period between posts, so let's get to it...
Here are my dialysis weights:
11 Sept
Starting Weight: 105.1 Kg
Water Removed: 0.5 Kg (*A miscommunication between myself and the tech)
Ending Weight: 104.5 Kg
13 Sept
Starting Weight: 105.1 Kg
Water Removed: 2.2 Kg
Ending Weight: 102.9 Kg
15 Sept
Starting Weight: 105.0 Kg
Water Removed: 2.0 Kg
Ending Weight: 103.0 Kg
18 Sept
Starting Weight: 105.5 Kg
Water Removed: 2.3 Kg
Ending Weight: 103.2 Kg
As you can see, my weight is staying at a consistent level, even with my eating more. I won't be complaining about it, though. Holding steady is a good thing!
My headache continues to be lower--on my off days, at least. On Dialysis day I am using between four to six T3s. On my off day, I am using two. For an average, I am now using 3.66 T3's per day...down significantly from before I started the dialysis. On my off days I am going to start using regular Tylenol (2 - 500 mg tabs) to see if those will take care of the headache--or not. It's worth a try.
I got my dialysis vitamin in the mail. It is called Dialyvite 800 w/zinc. There are several different kinds or formulas of this vitamin. This one is what was recommended by the Davita Dietician. Like my multivitamin, I take one tablet per day. The dialysis vitamins are NOT covered by my insurance (check with your coverage!). I ordered these online from Hillestad Pharmaceuticals, a company in Wisconsin. The price for 100 doses was $11.60, plus $4 shipping. Plus, I got my order just two business days after placing it!
I also picked up the phosphorous binder. It is called Renvela (800 mg). I was told it was a huge pill; but after picking it up, I saw that it is no larger than the Gemfibrozil I've been taking for two plus years...so no big deal. I have to take the Renvela after every meal. It absorbs a portion of any phosphorous you ingest and eliminates it through the intestinal tract. So far I haven't noticed any aide effects.
*This med is very expensive at $200+ per month's usage. Be sure you have Rx insurance!!!
On Tuesday, during dialysis, I was given my first ever flu shot. Historically, I get the flu maybe once every twelve years--but when I do...look out!--so this was a new thing for me. The charge nurse stated that if I didn't, because of my kidneys, if I got the flu now, I would likely end up in the hospital ICU.
Hmmm....let me think about that one...
So, for the rest of my life I now get to have a yearly flu shot.
I haven't noticed any untoward side effects from the shot, and with nearly forty eight hours since inoculation, I am probably in the clear.
My dialysis days continue to be exhausting, achy, increased headache and lots of sleeping. I don't know if this will change. I hope it will.
My off days overall are better. Increased energy, lower headache, feeling somewhat rested, and having some creativity all continue to be a part of the off days. Plus, my appetite on the off days is better. I am still not eating a lot more, but I am eating more.
Still no word from the IHC Transplant office on my candidacy for transplant. I was hoping to hear something today. I'll just keep waiting.
That's all I can remember right now, so I'll be going.
Good Health to All!
ScottW
Here are my dialysis weights:
11 Sept
Starting Weight: 105.1 Kg
Water Removed: 0.5 Kg (*A miscommunication between myself and the tech)
Ending Weight: 104.5 Kg
13 Sept
Starting Weight: 105.1 Kg
Water Removed: 2.2 Kg
Ending Weight: 102.9 Kg
15 Sept
Starting Weight: 105.0 Kg
Water Removed: 2.0 Kg
Ending Weight: 103.0 Kg
18 Sept
Starting Weight: 105.5 Kg
Water Removed: 2.3 Kg
Ending Weight: 103.2 Kg
As you can see, my weight is staying at a consistent level, even with my eating more. I won't be complaining about it, though. Holding steady is a good thing!
My headache continues to be lower--on my off days, at least. On Dialysis day I am using between four to six T3s. On my off day, I am using two. For an average, I am now using 3.66 T3's per day...down significantly from before I started the dialysis. On my off days I am going to start using regular Tylenol (2 - 500 mg tabs) to see if those will take care of the headache--or not. It's worth a try.
I got my dialysis vitamin in the mail. It is called Dialyvite 800 w/zinc. There are several different kinds or formulas of this vitamin. This one is what was recommended by the Davita Dietician. Like my multivitamin, I take one tablet per day. The dialysis vitamins are NOT covered by my insurance (check with your coverage!). I ordered these online from Hillestad Pharmaceuticals, a company in Wisconsin. The price for 100 doses was $11.60, plus $4 shipping. Plus, I got my order just two business days after placing it!
I also picked up the phosphorous binder. It is called Renvela (800 mg). I was told it was a huge pill; but after picking it up, I saw that it is no larger than the Gemfibrozil I've been taking for two plus years...so no big deal. I have to take the Renvela after every meal. It absorbs a portion of any phosphorous you ingest and eliminates it through the intestinal tract. So far I haven't noticed any aide effects.
*This med is very expensive at $200+ per month's usage. Be sure you have Rx insurance!!!
On Tuesday, during dialysis, I was given my first ever flu shot. Historically, I get the flu maybe once every twelve years--but when I do...look out!--so this was a new thing for me. The charge nurse stated that if I didn't, because of my kidneys, if I got the flu now, I would likely end up in the hospital ICU.
Hmmm....let me think about that one...
So, for the rest of my life I now get to have a yearly flu shot.
I haven't noticed any untoward side effects from the shot, and with nearly forty eight hours since inoculation, I am probably in the clear.
My dialysis days continue to be exhausting, achy, increased headache and lots of sleeping. I don't know if this will change. I hope it will.
My off days overall are better. Increased energy, lower headache, feeling somewhat rested, and having some creativity all continue to be a part of the off days. Plus, my appetite on the off days is better. I am still not eating a lot more, but I am eating more.
Still no word from the IHC Transplant office on my candidacy for transplant. I was hoping to hear something today. I'll just keep waiting.
That's all I can remember right now, so I'll be going.
Good Health to All!
ScottW
Wednesday, September 12, 2012
12 September 2012
The Transplant Evaluation is done.
I was incorrect about the tests--aside from a prodigious amount of blood drawn--but spot on in my anticipation of the remainder of the day. Here's how it went...
0850a--Arrival at InterMountain Medical Center [campus] in Murray, UT. Check in with Transplant Team Office front desk. Verify Insurance, Emergency Contacts, Basic Info, etc. I was invited to set up their "My Health at Home" online site so I can access my labs, keep track of things, etc. This is similar to the Davita and Central Utah Clinic sites that I actively use.
0900a--I am weighed (106.00 Kg's this morning) then escorted to the exam room I will be in for most of the next six and a half hours. Then, vitals were taken, I provided a list of my meds, and the attending nurse went over the schedule for the day.
0915a--Meet my Transplant Coordinator (Mayra, pr my-ruh). Mayra went into depth about the process I would go through during the Transplant Eval, as well as the process for the transplant itself. I had to sign a number of agreements, understandings, policies, etc. She also conducted a question and answer with us to clarify anything not understood.
1000a--Financial Adviser discussed exactly what my insurance will cover, the deductibles, meds, etc. She had a lot of paperwork for me to sign, and tons of info to help us understand as much as we could about the costs, our financial obligations, etc. It was incredibly informative.
1100a--Social Worker came in to talk about the support and care mechanisms that need to be in place for any transplant patient. I had to list family, friends and close associates who might be available to help care for me once I am home from the hospital [and the transplant]. She also had questions for me pertaining to how I am doing with everything I am going through, how home life is, if I feel I am depressed, how I cope with things, etc. It was in in-depth interview. No hiding or deceiving here!
1200p--Labs. I had to do a urine sample, and a LOT of blood for tests such as CBC, Renal Panel, HIV, Hepatitis, etc. In all I had 10 vials of blood drawn for this series of tests.
After that, I was given the rest of the hour for a lunch break. Luckily, on the IHC campus there are a number of choices for food offerings.
0100p--Dietitian comes in to discuss my current dietary guidelines/restrictions and emphasize that as I go through this process what I eat, when I eat and how much I eat will change and be adjusted according to what my body is doing at any given time. This is determined by my labs and by the dialysis dietitian.
0200p--A Transplant Surgeon came in to talk with me about my overall health, past surgeries, and explained the basics of the transplant itself. If I get the transplant, he decided that my kidneys will be removed (about 4-6 weeks prior to the transplant) because of the pain I am having over both flanks. He also did a Q & A with us. A fairly specific exam was done, as well.
0300p--A Transplant Team Nephrologist came in to go over my [PCKD] disease history, meds, dialysis and another physical exam. He also conducted a Q & A and got a general feel for me as a patient and potential transplant recipient.
0330p--End of the Transplant Evaluation. I then had to go to the lab to give another 5 vials of blood for cross-matching, measuring antigens and antibodies, etc.
Now, I get to wait. Within a week the Transplant Committee will meet to discuss my case. They will pore over the information gathered today, as well as my Pt Hx, and decide whether or not I am a good candidate for transplant. I should know by this time next week what the decision is. The Transplant Committee is made up of about twenty Specialists, Clinicians and assorted others.
As the day progressed, I got the impression--based on questions, info given, and other comments--that I am likely to be approved.
However...that is ONLY a guess on my part! I won't know anything one way or the other until next week. So...as we used to say in Search and Rescue training, "Hurry up and wait."
I was given far too much information today to put it all down here. Among the highlights:
-All testing associated with the transplant must be done at the IHC Murray Campus. This has to do with being a Medicare Optimum Provider...or something like that.
-The transplant workup should take 3-6 months, or so. Anything much longer than that and the Transplant Team will begin to question the patients' commitment to the lifetime of schedules, meds, doctor appointments, etc. After all, if a transplant patient neglects the organ donation--the gift they have been given--and has preventable complications a/o rejection, then they have prevented another patient, committed to caring for the donation, from obtaining the organ and an opportunity is wasted. Hence the very in-depth scrutiny of this whole process.
-In Utah, a living donor transplant will be done within 6-12 months. A cadaver donation could take as long as two+ years.
-The Transplant Team is available to the patient twenty four hours a day. Any changes, any new meds, and hospitalizations, etc are to be reported immediately day or night. The Team is there to help the patient from now on. It's a pretty awesome setup.
And that's what I've got for today. My brain is fried, I've been up since 0600a this morning and have to be up in six and a half hours from right now for my Thursday dialysis. So, if you have questions, please type them up under the comment section and I will get to them ASAP.
Good Health to All!
ScottW
I was incorrect about the tests--aside from a prodigious amount of blood drawn--but spot on in my anticipation of the remainder of the day. Here's how it went...
0850a--Arrival at InterMountain Medical Center [campus] in Murray, UT. Check in with Transplant Team Office front desk. Verify Insurance, Emergency Contacts, Basic Info, etc. I was invited to set up their "My Health at Home" online site so I can access my labs, keep track of things, etc. This is similar to the Davita and Central Utah Clinic sites that I actively use.
0900a--I am weighed (106.00 Kg's this morning) then escorted to the exam room I will be in for most of the next six and a half hours. Then, vitals were taken, I provided a list of my meds, and the attending nurse went over the schedule for the day.
0915a--Meet my Transplant Coordinator (Mayra, pr my-ruh). Mayra went into depth about the process I would go through during the Transplant Eval, as well as the process for the transplant itself. I had to sign a number of agreements, understandings, policies, etc. She also conducted a question and answer with us to clarify anything not understood.
1000a--Financial Adviser discussed exactly what my insurance will cover, the deductibles, meds, etc. She had a lot of paperwork for me to sign, and tons of info to help us understand as much as we could about the costs, our financial obligations, etc. It was incredibly informative.
1100a--Social Worker came in to talk about the support and care mechanisms that need to be in place for any transplant patient. I had to list family, friends and close associates who might be available to help care for me once I am home from the hospital [and the transplant]. She also had questions for me pertaining to how I am doing with everything I am going through, how home life is, if I feel I am depressed, how I cope with things, etc. It was in in-depth interview. No hiding or deceiving here!
1200p--Labs. I had to do a urine sample, and a LOT of blood for tests such as CBC, Renal Panel, HIV, Hepatitis, etc. In all I had 10 vials of blood drawn for this series of tests.
After that, I was given the rest of the hour for a lunch break. Luckily, on the IHC campus there are a number of choices for food offerings.
0100p--Dietitian comes in to discuss my current dietary guidelines/restrictions and emphasize that as I go through this process what I eat, when I eat and how much I eat will change and be adjusted according to what my body is doing at any given time. This is determined by my labs and by the dialysis dietitian.
0200p--A Transplant Surgeon came in to talk with me about my overall health, past surgeries, and explained the basics of the transplant itself. If I get the transplant, he decided that my kidneys will be removed (about 4-6 weeks prior to the transplant) because of the pain I am having over both flanks. He also did a Q & A with us. A fairly specific exam was done, as well.
0300p--A Transplant Team Nephrologist came in to go over my [PCKD] disease history, meds, dialysis and another physical exam. He also conducted a Q & A and got a general feel for me as a patient and potential transplant recipient.
0330p--End of the Transplant Evaluation. I then had to go to the lab to give another 5 vials of blood for cross-matching, measuring antigens and antibodies, etc.
Now, I get to wait. Within a week the Transplant Committee will meet to discuss my case. They will pore over the information gathered today, as well as my Pt Hx, and decide whether or not I am a good candidate for transplant. I should know by this time next week what the decision is. The Transplant Committee is made up of about twenty Specialists, Clinicians and assorted others.
As the day progressed, I got the impression--based on questions, info given, and other comments--that I am likely to be approved.
However...that is ONLY a guess on my part! I won't know anything one way or the other until next week. So...as we used to say in Search and Rescue training, "Hurry up and wait."
I was given far too much information today to put it all down here. Among the highlights:
-All testing associated with the transplant must be done at the IHC Murray Campus. This has to do with being a Medicare Optimum Provider...or something like that.
-The transplant workup should take 3-6 months, or so. Anything much longer than that and the Transplant Team will begin to question the patients' commitment to the lifetime of schedules, meds, doctor appointments, etc. After all, if a transplant patient neglects the organ donation--the gift they have been given--and has preventable complications a/o rejection, then they have prevented another patient, committed to caring for the donation, from obtaining the organ and an opportunity is wasted. Hence the very in-depth scrutiny of this whole process.
-In Utah, a living donor transplant will be done within 6-12 months. A cadaver donation could take as long as two+ years.
-The Transplant Team is available to the patient twenty four hours a day. Any changes, any new meds, and hospitalizations, etc are to be reported immediately day or night. The Team is there to help the patient from now on. It's a pretty awesome setup.
And that's what I've got for today. My brain is fried, I've been up since 0600a this morning and have to be up in six and a half hours from right now for my Thursday dialysis. So, if you have questions, please type them up under the comment section and I will get to them ASAP.
Good Health to All!
ScottW
Sunday, September 9, 2012
09 September 2012
A long while has passed since my last entry, so let's get going...
To start, here are the dialysis weights since 30 Aug:
30 Aug
Starting Weight: 105.2 Kg
Water Removed: 1.70 Kg
Ending Weight: 103.5 Kg
01 Sept
Starting Weight: 104.8 Kg
Water Removed: 1.70 Kg
Ending Weight: 103.1 Kg
04 Sept
Starting Weight: 105.8 Kg
Water Removed: 2.70 Kg
Ending Weight: 103.1 Kg
06 Sept
Starting Weight: 104.7 Kg
Water Removed: 1.20 Kg
Ending Weight: 103.5 Kg
08 Sept
Starting Weight: 105.1 Kg
Water Removed: 1.90 Kg
Ending Weight: 103.2 Kg
We are trying to make 103.5 Kg's my consistent dry weight. I have the fewest body aches, the fewest cramps, and the least negative effects from the dialysis at 103.5.
I am still waiting for my insurance to preauthorize the lidocane cream for my fistula arm. Once it is, I will apply it 45 minutes-1 hour before dialysis, wrap the lower arm in cellophane, and let the cream soak in. By the time canulation arrives, I am told the needle sticks will be pain free and the stinging will be absent.
Overall things with the dialysis are improving. I continue to notice the headache as being reduced from its nastiness of pre-dialysis. The pain level has dropped to about a 7.5, and my T3 use has dropped accordingly as well. On dialysis day I take more (4-6) because the headache increases during the treatment for some reason and stays all day. However, on my off days, the usage drops to about 3 per day. I've even had a couple of days that I took only one tablet! Hopefully, this trend will continue.
My energy level continues to improve. Overall, I would estimate that I have about 5-7% more energy since starting the treatments. It's not a lot, but it is an improvement.
This past week I seem to have been more tired than usual. I don't know why this is. I am sleeping fairly well at night, my naps are reduced in length and frequency, and I am still eating a bit more than what had become normal. It certainly could be my kidneys continuing to deteriorate. I do know that I've had that ill feeling a lot the past month or so. It wouldn't surprise me one bit.
The labs that the dialysis center focuses on are consistent from week to week. The numbers they are looking at include:
-Albumin 4.7 g/dL (4.0 g/dL min.)
*(from the Davita website) "Albumin is the most common protein found in the blood. It provides the body with the protein needed to both maintain growth and repair tissues. During a dialysis treatment, the albumin in your blood also helps with fluid removal. It helps “pull” extra fluid from swollen tissues back into the blood, where it can then be removed by the dialyzer."
-Hemoglobin 11.2
*(from Davita) "Anemia happens when your body is not making enough red blood cells. Red blood cells carry oxygen to all the cells in the body. The body’s cells use oxygen to change the glucose we get from food into energy. Fewer red blood cells means less oxygen is sent to the cells. Without enough oxygen, your tissues and organs have less energy to perform their jobs. Untreated anemia can affect major organs like your heart and brain."
**My latest labs show my RBC at 32.2, well below the normal range of 45-60. This shows I continue to be anemic. The Hemoglobin is simply another measure of the RBC.
-Calcium Corrected 10.0 mg/dL (8.4-10.2 mg/dL)
* (from Davita) "Calcium is an essential mineral that is controlled in the diets of people on dialysis. According to the National Kidney Foundation, people with chronic kidney disease (CKD) should not exceed 2,000 mg of calcium per day. This includes not only the calcium present in food, but also that in medications and supplements such as calcium-based phosphorus binders. It’s important to work with your physician and dietitian and learn how to maintain a healthy level of calcium."
-Phosphorus 4.9 mg/dL (3.0-5.5 mg/dL)
*(from Davita) "Phosphorus is a mineral found in the body. About 85% of the phosphorus in the body is in bones. Phosphorus is the body’s next most abundant mineral after calcium.
Because unhealthy kidneys are no longer able to remove phosphorus from the blood and get rid of the excess in urine, high levels of phosphorus (hyperphosphatemia) is a problem for people with stage 4 and 5 kidney disease, especially stage 5 (also known as end stage renal disease or ESRD).
High levels of phosphorus in the blood can cause:
-PTH Intact 118 pg/mL (150-600 pg/mL)
*(from Davita) "PTH stands for parathyroid hormone. If you are on dialysis, you will recognize it as one of your routine blood tests. This hormone is made by your parathyroid glands. These small glands are located behind the thyroid gland in your neck.
The key purpose of the parathyroid glands is to keep the calcium and phosphorus in the blood at a constant, normal level. If, for example, the blood calcium becomes low, the parathyroid gland will respond by secreting more PTH. This extra PTH then will pull calcium from the bones, correcting the low blood level. This give-and-take response works well until kidney failure begins to occur."
-Potassium 4.2 mEq/L (3.5-5.5 mEq/L)
*(from Davita) "Potassium is a mineral that controls nerve and muscle function. One very important muscle—the heart—beats at a normal rhythm because of potassium. In addition potassium is necessary for maintaining fluid and electrolyte balance and pH level. In order for potassium to perform these functions, blood levels must be kept between 3.5 and 5.5 mEq/L. The kidneys help keep potassium at a normal level. Potassium levels that are too high or too low can be dangerous."
-URR 74% (65% min)
*(from Davita) "Healthy kidneys work 24 hours a day, seven days a week. When kidneys stop working, dialysis does this job, but it only does some of the work. It is possible to live a long and healthy life receiving dialysis three times a week by ensuring that your blood is optimally cleaned during each treatment.
The dialysis center uses a test called urea reduction ratio, or URR, to show how well your blood is cleaned during your treatments. Every month you will see your results on your nutrition report. The goal is a score of 65 percent or better on the URR test."
*As time goes on you will see these numbers fluctuating or dropping. It is just a normal course as the kidney disease progresses. I will try to keep you current on these numbers from week to week.
The bilateral flank pain seems to be worsening...or, I am just getting tired of it so the pain only seems worse. In either case, I am more uncomfortable than ever whether sitting, laying or even standing. Walking exacerbates it of course, so I am depending on the cane more than ever because of that.
I have the Transplant Evaluation Appointment this coming Wednesday, 12 Sept. It will be an all day affair. There will be about a half dozen tests as well as interviews with the Transplant Team Specialists including a surgeon, a nephrologist, a financial counselor, a psychologist, etc. I will write about as much of it as I can remember on either Wednesday evening or on Friday.
That's about all I can think of writing tonight.
Good Health to All!
ScottW
To start, here are the dialysis weights since 30 Aug:
30 Aug
Starting Weight: 105.2 Kg
Water Removed: 1.70 Kg
Ending Weight: 103.5 Kg
01 Sept
Starting Weight: 104.8 Kg
Water Removed: 1.70 Kg
Ending Weight: 103.1 Kg
04 Sept
Starting Weight: 105.8 Kg
Water Removed: 2.70 Kg
Ending Weight: 103.1 Kg
06 Sept
Starting Weight: 104.7 Kg
Water Removed: 1.20 Kg
Ending Weight: 103.5 Kg
08 Sept
Starting Weight: 105.1 Kg
Water Removed: 1.90 Kg
Ending Weight: 103.2 Kg
We are trying to make 103.5 Kg's my consistent dry weight. I have the fewest body aches, the fewest cramps, and the least negative effects from the dialysis at 103.5.
I am still waiting for my insurance to preauthorize the lidocane cream for my fistula arm. Once it is, I will apply it 45 minutes-1 hour before dialysis, wrap the lower arm in cellophane, and let the cream soak in. By the time canulation arrives, I am told the needle sticks will be pain free and the stinging will be absent.
Overall things with the dialysis are improving. I continue to notice the headache as being reduced from its nastiness of pre-dialysis. The pain level has dropped to about a 7.5, and my T3 use has dropped accordingly as well. On dialysis day I take more (4-6) because the headache increases during the treatment for some reason and stays all day. However, on my off days, the usage drops to about 3 per day. I've even had a couple of days that I took only one tablet! Hopefully, this trend will continue.
My energy level continues to improve. Overall, I would estimate that I have about 5-7% more energy since starting the treatments. It's not a lot, but it is an improvement.
This past week I seem to have been more tired than usual. I don't know why this is. I am sleeping fairly well at night, my naps are reduced in length and frequency, and I am still eating a bit more than what had become normal. It certainly could be my kidneys continuing to deteriorate. I do know that I've had that ill feeling a lot the past month or so. It wouldn't surprise me one bit.
The labs that the dialysis center focuses on are consistent from week to week. The numbers they are looking at include:
-Albumin 4.7 g/dL (4.0 g/dL min.)
*(from the Davita website) "Albumin is the most common protein found in the blood. It provides the body with the protein needed to both maintain growth and repair tissues. During a dialysis treatment, the albumin in your blood also helps with fluid removal. It helps “pull” extra fluid from swollen tissues back into the blood, where it can then be removed by the dialyzer."
-Hemoglobin 11.2
*(from Davita) "Anemia happens when your body is not making enough red blood cells. Red blood cells carry oxygen to all the cells in the body. The body’s cells use oxygen to change the glucose we get from food into energy. Fewer red blood cells means less oxygen is sent to the cells. Without enough oxygen, your tissues and organs have less energy to perform their jobs. Untreated anemia can affect major organs like your heart and brain."
**My latest labs show my RBC at 32.2, well below the normal range of 45-60. This shows I continue to be anemic. The Hemoglobin is simply another measure of the RBC.
-Calcium Corrected 10.0 mg/dL (8.4-10.2 mg/dL)
* (from Davita) "Calcium is an essential mineral that is controlled in the diets of people on dialysis. According to the National Kidney Foundation, people with chronic kidney disease (CKD) should not exceed 2,000 mg of calcium per day. This includes not only the calcium present in food, but also that in medications and supplements such as calcium-based phosphorus binders. It’s important to work with your physician and dietitian and learn how to maintain a healthy level of calcium."
-Phosphorus 4.9 mg/dL (3.0-5.5 mg/dL)
*(from Davita) "Phosphorus is a mineral found in the body. About 85% of the phosphorus in the body is in bones. Phosphorus is the body’s next most abundant mineral after calcium.
Because unhealthy kidneys are no longer able to remove phosphorus from the blood and get rid of the excess in urine, high levels of phosphorus (hyperphosphatemia) is a problem for people with stage 4 and 5 kidney disease, especially stage 5 (also known as end stage renal disease or ESRD).
High levels of phosphorus in the blood can cause:
- bone and heart problems that lead to hospital stays and in some cases death
- too much PTH to be released, which over time can weaken bones and make them more likely to break and develop renal osteodystrophy
- low blood calcium, which causes calcium to be taken from the bones
- calcification or hardening of tissues when phosphorus and calcium form hard deposits in the heart, arteries, joints, skin or lungs that can be painful and lead to serious health problems
- bone pain
- itching"
-PTH Intact 118 pg/mL (150-600 pg/mL)
*(from Davita) "PTH stands for parathyroid hormone. If you are on dialysis, you will recognize it as one of your routine blood tests. This hormone is made by your parathyroid glands. These small glands are located behind the thyroid gland in your neck.
The key purpose of the parathyroid glands is to keep the calcium and phosphorus in the blood at a constant, normal level. If, for example, the blood calcium becomes low, the parathyroid gland will respond by secreting more PTH. This extra PTH then will pull calcium from the bones, correcting the low blood level. This give-and-take response works well until kidney failure begins to occur."
-Potassium 4.2 mEq/L (3.5-5.5 mEq/L)
*(from Davita) "Potassium is a mineral that controls nerve and muscle function. One very important muscle—the heart—beats at a normal rhythm because of potassium. In addition potassium is necessary for maintaining fluid and electrolyte balance and pH level. In order for potassium to perform these functions, blood levels must be kept between 3.5 and 5.5 mEq/L. The kidneys help keep potassium at a normal level. Potassium levels that are too high or too low can be dangerous."
-URR 74% (65% min)
*(from Davita) "Healthy kidneys work 24 hours a day, seven days a week. When kidneys stop working, dialysis does this job, but it only does some of the work. It is possible to live a long and healthy life receiving dialysis three times a week by ensuring that your blood is optimally cleaned during each treatment.
The dialysis center uses a test called urea reduction ratio, or URR, to show how well your blood is cleaned during your treatments. Every month you will see your results on your nutrition report. The goal is a score of 65 percent or better on the URR test."
*As time goes on you will see these numbers fluctuating or dropping. It is just a normal course as the kidney disease progresses. I will try to keep you current on these numbers from week to week.
The bilateral flank pain seems to be worsening...or, I am just getting tired of it so the pain only seems worse. In either case, I am more uncomfortable than ever whether sitting, laying or even standing. Walking exacerbates it of course, so I am depending on the cane more than ever because of that.
I have the Transplant Evaluation Appointment this coming Wednesday, 12 Sept. It will be an all day affair. There will be about a half dozen tests as well as interviews with the Transplant Team Specialists including a surgeon, a nephrologist, a financial counselor, a psychologist, etc. I will write about as much of it as I can remember on either Wednesday evening or on Friday.
That's about all I can think of writing tonight.
Good Health to All!
ScottW
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