31 Jan. 2011

I've made my decision regarding dialysis.

Because of concerns with my ongoing lower back issues, as well as the sensitivity I am feeling in my abdomen, plus what I feel to be too large a personal commitment, I am saying "No" to the Peritoneal Dialysis, and am saying "Yes" to the Hemo Dialysis.

Also, I am strongly considering doing Home Hemo Dialysis. All the literature I've read indicates that the average patient has more energy on home hemo, a better appetite, and a significantly reduced recovery time following each treatment that would allow me to have a better quality of life.

Home Hemo entails 5 days/week, and between 3-4 hours per treatment (Tx), versus 3 days/week and 4-6 hours per Tx. (These times also includes prep and cleanup times.) Add the time difference to the benefits listed above, and you can see why I am leaning towards Home Hemo. Additionally, if I do the home dialysis, all supplies would be delivered to my door--which would significantly lessen any potential issues with supply stocks.

Also, because I am going with Hemo Dialysis, I am going to be scheduled to have an AV Fistula implanted in my arm. This is needed for blood access for the dialysis itself. Shunts and catherters are no longer the preferred method of access as tissue growth in and around the adjunct. Plus septic concerns surrounding the access points are eliminated with the AV Fistula, and incidences of infection are rare.


What is an Arteriovenous (AV) Fistula?

An AV fistula requires advance planning because a fistula takes a while after surgery to develop—in most cases from 3-6 months. A properly formed fistula is less likely than other kinds of vascular access to form clots or become infected. Also, properly formed fistulas tend to last many years—longer than any other kind of vascular access.

A surgeon creates an AV fistula by connecting an artery directly to a vein, frequently in the forearm. Connecting the artery to the vein causes more blood to flow into the vein. As a result, the vein grows larger and stronger, making repeated needle insertions for hemodialysis treatments easier. For the surgery, you’ll be given a local anesthetic. In most cases, the procedure can be performed on an outpatient basis.

(arteriovenous fistula.)

Arrows show the direction of blood flow. Two needles are inserted into the fistula. One needle carries blood to the dialysis machine and the other needle returns blood from the dialysis machine.
*From the National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC)

So, I'll be contacting my doc tomorrow (following more Hemo dialysis consultation) to set up the outpatient procedure. After that, the AV Fistula has to heal and strengthen--usually 3-6 months. IF my kidney's decide to shut down before the AV Fistula is ready for use, then I'd be given a temporary venous catheter, usually inserted in the neck. Dialysis would be done through this until the AV Fistula is strong enough for Hemo Dialysis.

I will keep you up to date about the schedule of the procedure. Assuming the anesthetic is a local, I may be able to give a first hand account of the whole thing. That would be danged cool! I've seen many surgeries in my paramedic training, and it's always fascinating!


In Other news, I continue to feel exhausted 24/7. Yesterday in fact, I took a 4.5 hour nap in the middle of the day, and still dragged around all evening.

My sleep is as terrible as ever. My dreams are OK; nothing to be concerned about. I just can't stay asleep for more than 45 minutes or so before waking, then struggle to get back to sleep. Plus, the area over my kidneys is just so painful. Right now, I'm averaging about 4.5 hours of sleep per night.

The ammonia I smell never reduces these days. In fact, there are days that it is worse than ever...like today. Just nasty!

My appetite remains up around 2-3 cups per day. The last two days I've eaten between 1.5-2 cups; but I'm hoping this is only temporary, and will soon be back up again.

My headache is like the Energizer Bunny. It goes, and goes, and goes...

Everything else remains the same. With my kidney function dropping I don't expect things to change for the better any time soon.

That's it. I'm tired, so I'll go rest now.

Again, I'll keep you up to date regarding the AV Fistula procedure. If you have any questions, please write to me and I'll do my best to answer them.

Good Health to All!

ScottW

27 Jan. 2011

!!!! Bad News Is Good News !!!!

Today's nephrology appointment went better than expected. (It is still a weird way to look at it; but that's the reality!)

My latest blood work shows a precipitous 4% drop in kidney function. I am officially (once again) in End Stage Renal Disease at 18.2%.

Now I get to make decisions--
-Do I do home Peritoneal Dialysis?
-Do I do home Hemodialysis?
-Do I do clinical hemodialysis?
-Do I do nothing at all?

Well, that last one is a no brainer...of course I'll do something! Doing nothing would result in my death once renal failure occurs. NOT AN OPTION!

My real decision will be between peritoneal or hemo dialysis.

After already doing a lot of research, I am leaning heavily towards hemodialysis. The only question then becomes, do I do it at home, or at a dialysis center?

I'm taking a week to make the decision. I'll post the answer as soon as I make my choice.

Other labs are as follows:
(I'm giving two sets of lab values. The first is from today's results, plus the normal ranges. The second number is the results from my labs in late Nov. 2010.

-Parathyroid Hormone (PTH) is great at 71.9 (22.2-108.9) *Drop from 75.9
-Potassium (K+) 4.2 (3.5-5.5) *A slight rise from 4.0
-Glucose 104 (65-109) *Large rise from 95
-BUN 39.0 (5-26) *Extremely High, but a drop from 43.0
-Serum Creatinine 3.8 (0.5-1.5) *Rise from 3.2
-WBC 4.26 (4.5-11.0) *Drop from 4.90
-RBC 4.19 (4.7-6.1) *Drop from 4.40
-Hematocrit 34.7 (42-52) *Drop from 37.1
-Also, my doctor stated that the liver enzymes were good. (Sorry, but I'm not sure which numbers these are on the lab report.)

After all of these numbers, everything remains solely about the PCKD. I remain free of diabetes, liver disease, cardiopulmonary edema, etc. I really have been blessed that no additional issues have arisen.

And there you are. Progression...finally! At least I know why I've been feeling so lousy the past few months. While the news is welcomed, it is also a bit jarring. Planning for this is one thing--actually making the decisions is quite another. It must now become a part of the new normal. It will be unsettling for a brief time; but will soon be a matter of fact. No worries!

So, please continue to join me as I enter the next phase of my fight against Polycystic Kidney Disease. It remains a challenging, fascinating and difficult experience.
Let's see where it goes next...

Good Health to All!

ScottW

Finding Support On Your Transplant Journey

The following article was sent to me by The Transplant Experience--a kind of help desk website for organ transplant patients (both potential and current). The website is sponsored by Astellas Pharmaceuticals, and was created as an information database for organ transplant, and its associated issues.

"Finding Support To Help You Succeed
In Your Transplant Journey"

Staying positive while you are waiting for your new organ isn't always easy. Sometimes the whole process can seem overwhelming; but it's important to remember that you can succeed—and there is help available. If you are feeling isolated or uninvolved, or just want to talk about your experience, there are many organizations that can help.

Here are just a few of the many organizations created to meet the needs of those who are pre-transplant and their loved ones. You can access a comprehensive list of support organizations at www.TransplantExperience.com.

National Foundation for Transplants (NFT)
NFT is a nonprofit organization that focuses on helping those seeking a new life through transplantation. NFT provides fund-raising campaigns for transplant recipients.

Transplant Recipients International Organization, Inc. (TRIO)
TRIO is an independent, international nonprofit organization committed to improving the quality of life of transplant candidates, recipients, family members, and donor families. TRIO provides support, awareness, education, and advocacy to those involved with organ transplants.

Children's Organ Transplant Association (COTA)
COTA strives to make lifesaving organ transplants accessible to children of all ages. COTA also works to arrange the funding necessary for transplant expenses.

National Transplant Assistance Fund (NTAF)
NTAF has a 26-year record of success helping families address financial hardships arising from uninsured medical expenses related to transplantation. NTAF offers fund-raising guidance and provides direct financial assistance in the form of $500 and $1,000 challenge grants to eligible patients.

Find support groups in your local area by using the Transplant Experience support group locator.

Preparing For The Year Ahead

The coming of the new year is a particularly good time to calculate your expected expenses for the year ahead and to review your medical plan to ensure that you are prepared for any potential changes in your health or transplant status. Talk to your transplant financial coordinator to better understand your financial responsibilities and your level of coverage for care received before transplant and what you can expect post-transplant. Also find out if your plan covers expenses related to your transplant surgery, such as travel, food, and lodging while you are at the transplant center.

If your coverage changes such that you find yourself underinsured or uninsured, your transplant financial coordinator may be able to help you locate financial assistance programs for which you may qualify.

Your insurance coverage or carrier is subject to change with each benefit year, and it is important to understand how these potential changes may affect you.


**If you wish to receive these newsletters on your own, I encourage you to visit The Transplant Experience, or Astellas Pharmaceuticals. You may find the website address on the left side of this blog located under the heading "Helpful Renal Websites."

24 Jan. 2011

Wow! I have been feeling lousy!

As far as I know I'm not doing anything to amplify any S/S's. I awaken each day more fatigued than the last; my meds continue to cause me terrible nausea; and I am going day to day with such exhaustion and general ill-feeling that you'd think I had the flu or some other intense (temporary) ailment. Also, that weird thing I talked about in my last blog...

...well, it continues. I'm fairly positive it is some sort of sympathetic nervous system response; but what it is responding to is the real puzzler.

My naps have taken a leap forward. Since my last blog entry I have had daily naps (the long ones, mind you. This is not counting the short naps) of 3 hours, 5 hours, 4 hours and two hours. Plus, my restlessness at night has increased. Take last night, for instance. I went to bed sleepy and exhausted at 1130p. I wasn't able to sleep until after 1a. Plus, I awoke at 145a, 215a, 330a, 415a, 545a, 630a and I finally got out of bed at 715a. (*Yes, I remember waking all these times because I always look at the clock to check the time.) The only long, decent sleep I got was on Saturday night; and that was because I had to take a dose of Promethazine before going to sleep.

I have continued to have the increased appetite. As before, I'm still eating next to nothing during the day; but at least my overall daily food intake had increased. Again, I don't know how long this will go on, but I will absolutely take it for however long it stays with me.

The headache remains strong. It hasn't dipped below an 8 for weeks now, and is rarely less than an 8.5. No relief beyond pharmaceutical. Fun.

The ammonia smell has been going up and down. Sometimes it's really intense; and other times it's better (not that that's saying much). The other day I had it so intensely on exhalation that I was grossing myself out! ICK!!!

Well, I had a few more things I wanted to mention, but I have suddenly bgecome intensly sleepy, so I'll be gooing.

Good Health too All!

ScottW

21 Jan. 2011

A Few things...

First, I want to report that over the last three days my daily med intake has hit me like a hard punch in the stomach. I'm always OK at first; but withing three or four minutes, I have incredibly intense nausea slamming me, and won't let go for at least thirty minutes. This is a new development, so I'll be informing my doc about it next week [at my appointment].

Next, I had labs drawn today in advance of the above appointment. In addition to the renal panel, Parathyroid, CBC, UA, etc, the doc ordered a liver enzyme check. I'm not surprised at this because associated liver impairment is a risk factor amongst late stage PCKD patients.

My appetite has been better the last three or four days. I'm still not eating anything most of the day; but my one meal has increased from 1-1.5 cups to about 2-3 cups. This is VERY good news. I don't know if it will last; but I'll certainly take the extra food as long as I can ingest it and keep it down! (Another small victory!)

Lastly, something weird. I'm only telling you this because it is weird. Since this past Wednesday whenever I urinate, I am getting moderate bleeding of my gums. This happens ONLY when I am urinating. At all other times of the day, my gums are fine, and there is no blood. There is no pain or swelling of the gums; nothing to indicate a reason for this. I am getting plenty of fluids so it has nothing to do with dehydration. It simply happens. This could very well be coincidental; but with the blood coming into my mouth whenever I urinate...??? I know...weird. Definitely a symptom to pass along to my doctor.

That's all for now.

Good Health to All!

ScottW

20 Jan. 2011

The exhaustion continues without any respite.

My nausea has backed off a bit so that I am able to eat again; which is a very good thing. However, I have felt a number of times the past few days that the overwhelming nausea is just a breath away--as if I do one wrong thing and the nausea will just explode. So, for a few days now I have been successfully keeping the nasty stuff at bay. (Remember...small victories!)

On the headache front, my average usage of the T3 is now 3.25/day. Of course, being an average, there are days when I take less, and others that I take more. Over the last few days, I have been taking less as the headache has decreased its intensity to about a solid 8. (Yay!)

Dizziness and incidents of vertigo remain high. Also, over the last four days or so I have been losing my balance frequently when standing, or when moving slowly. I'm not completely losing my balance, mind you; it's as if I've stumbled over something on the floor and must catch myself. That's really the best I can describe it.

My urinary flow remains somewhat consistent. There are times when my bladder feels really full, but the total output is not what my body tells me is there. Other things I have to look at regularly include color (good right now), odor (very bad right now), cloudiness (moderate) and how much it foams up on impact with the toilet water (a lot right now). I will be telling my doctor all about these things on my visit next week.

The edema throughout my body will not decrease. It's the same 24/7. This one definitely has me concerned. As previously mentioned, as the edema becomes systemic, the chances of developing cardiopulmonary edema increases as well. So far I am not having chest pains, nor am I struggling to breath. However, whenever I lie down, my heart pounds and I have to breathe deeply a number of times. This goes on for over 15 minutes after going to bed.

I'm still cold...well, frozen is a better word. I do what I can to get warm, then put up with what I can't change. (Summertime get here soon!)

Everything else remains as I have been reporting it.

My apologies for not being more consistent in my entries. I'm really trying to be better. Most of the time I simply forget (so goes my brain lately). Other times I am just too tired to think and type anything. As always, I will continue to try my best about regular entries.

Let's have a few more better days!

Good Health to All!

ScottW

16 Jan. 2011

Utter exhaustion.

How else do I describe how I'm feeling?

The last three days have found me increasingly fatigued and exhausted. My sleep finds me tossing and turning at best. I am awaking daily every bit as tired and worn out as when I go to bed. This hasn't changed now is a number of weeks.

My appetite continues to be ridiculously poor. For the most part, I am only snacking the last week or so. I'm too tired to cook; too tired to even think about making food. Today, I had two slices of toast at about 1030a, and two slices of toast at 1130p. That's it. No snacks in between...just the toast.

Even if I had the inclination to eat today, my body is completely uncooperative. I have zero energy today, I feel blah all over, and my whole body is aching. Add on my ever-present and painful headache, and I just have no gumption to get anything done, aside from bathing.

Plus, the edema appears to be increasing in my legs, arms and face. I am growing concerned at the strong probability of developing cardiopulmonary edema. Either would be a major health concern. Having both could be dangerous.

I took three naps today of 15 min, 10 min, and two hours. As is the pattern, I suddenly feel tired so I make sure I am sitting (or laying) someplace comfortable.

I don't remember if there was anything else I wanted to say. Even if there was, my energy is completely gone, and I probably wouldn't have the strength to write it anyway.

Good Health to All!

ScottW

13 Jan. 2011

The "break" was nice while it lasted.

Monday was alright as well...and thank goodness for that because my birthday was on Monday. We had a few guests for dinner, and I was able to laugh and smile and enjoy the evening.

Tuesday started to show another regression of the major S/S's. The nausea ticked up, the headache increased, the edema worsened and my exhaustion continued to get stronger.

I did go see my PT doc on Tuesday morning--my first visit in three months--and he immediately stated how swollen my face is, and how completely fatigued I appear. We discussed how everything is going and what I can still expect. He wishes that he could do more for me; but that is out of his scope of practice. At least I have a second opinion regarding the edema reaching my face. So, it would definitely appear that it has indeed become systemic; as I already suspected.

Throughout Tuesday I began to feel worse and worse. By the end of the day I had taken three naps and was told that I looked miserable. Mentally I was OK...I just looked terrible. Also, because of how I felt, I didn't eat anything that might be considered substantial. I snacked on a few things and that was it.

Wednesday was more of the same. I awoke feeling exactly as when I went to sleep. (At least sleeping helps me get that mental break [from feeling lousy all the time] so that I am better able to handle the conscious struggle I must live every day). Anyway, I ended up taking a three hour nap (my only nap of the day) after being awake for about four hours. When I woke up from the nap, my headache was completely out of control, raging at a 10. I immediately downed one T3, then another 45 minutes later after the first hardly touched the headache.

I then ate some hot cereal (my first food of the entire day) and just endured the headache-- which by now had decreased to a 9 -9.5)--another three hours; at which time I could safely take another T3, followed by another an hour later. Even with all the meds in me, the headache was only down to an 8.5. So, I took my nighttime meds and went to bed for the night. My sleep was restless again (as usual now), but at least I awoke today with the headache somewhat under control again, at a solid 9.

So, more headaches, more exhaustion, increased systemic edema, and decreased food intake.....sounds like a winning combination! ;o)

Anyway, that's the update. Things are seemingly progressing in the direction we need them to...downhill--which is actually a good thing. At least the weather here is warming from 10 degrees to about 30...which helps me not be quite so frozen!

Good Health to All!

ScottW

09 Jan. 2011

The last four days have been a little better.

My nausea has backed off, and I haven't had to take any anti-emetic (Woo-Hoo!). Though I'm still nauseated all of the time, it just hasn't been the intense stuff that has made me so miserable the past while.

Sleeping continues to be an issue. The naps remain consistent. For instance, yesterday I took a total of four naps of 15 min, 45 min, 2 hours, and 30 min. This was following my now usual fitful "sleep" of about six hours. In spite of the sleep I get, my exhaustion seems to be increasing. I don't know how to change this. I'll be asking my doctor about it on my next visit.

Because of how I've been feeling overall, my appetite has been just awful. Most days I have about a cup of food, plus water, milk, etc. Once in a while I actually feel hungry, and eat a little more; but more often than not, I am eating only because I need food. Hunger in and of itself is becoming the exception.

The ammonia taste and odor has backed off a little. It's always there, mind you; but at least its not currently "in my face," so to speak.

The edema in my hands and legs has not diminished at all. In fact, just today I had my foot against an edge that I just didn't notice. When the area just below the ankle became uncomfortable (bordering on painful), I moved my foot and saw a deep, dark line along the side of the foot. It took 30 minutes for the normal skin color to return, and another 20 minutes for the indent to rebound.

In addition to the edema, both my hands and my feet remain terribly cold. Socks, blankets, fleece...none of these help. The only thing I've found that helps is to soak my feet in a bucket of hot water. Even then, no more than ten minutes pass before they are cold once again. I must admit though, that having cold hands and feet does lead to having some fun at my wife's expense! :o)

The vertigo continues to be a major problem. Most times I can no longer look up, or tilt my head back without waves of dizziness coming over me. Plus, getting up from a sitting position is also bringing lots of dizziness. So, lots of grabbing walls, counters, etc, as well as always using my can whenever I am out of the house.

Anyway, I am getting sleep, so I'll wrap this up.

I got as wished, had had a few days that were actually better.
Let's see if that continues.

Good Health to All!

ScottW

05 Jan. 2011

Not too much to say today that wasn't stated in my last entry.

Everything continues to be almost exactly as two days ago aside from two things...

1) Yesterday I had a very strong smell and taste of ammonia all day; and that continues into today, as well. It didn't come about because of anything...it just happened. The taste is so strong that it is overpowering any foods I eat. Nasty! As far as the smell--I'm having one of those days that find me fruitlessly waving my hand in front of my nose in a useless attempt to stop smelling it; if only for a little.

2) Yesterday was a really bad day. I walking around all day thoroughly exhausted; I took a 4+ hour nap; my head felt like it was splitting apart; my whole body was incredibly uncomfortable no matter if I was sitting or laying; and I just felt crappy all day. I ate nothing until 10p just because of how I was feeling. Then, once asleep, I was ridiculously restless for the whole 3.75 hours I "slept."

Let's hope that the next few days are better than the last two.

Good Health to All!

ScottW

03 Jan. 2011

Happy New Year, Everyone!

It's been a while since my last entry, and I'm not feeling up to anything lengthy; so, here's my abbreviated catch-up...

-Nausea has been a constant problem. Since my last entry, I've taken four doses of Promethazine. Twice I've been awoken with terrible nausea. The other two times it just hit me out of nowhere. As a result, my food intake has been less than normal.

-The water retention (edema) in my legs and hands has not decreased. Additionally, my feet have been itching a lot, and have been terribly uncomfortable--like a heavy blanket has been laying on them and you get that restless feeling of having to move...only, moving my feet doesn't help; that feeling remains.
Saturday my wife told me my face is looking swollen as well. If true, then the edema is increasing systemically. (Not a good thing!)

-My urinary output remains consistent in volume and color. Nothing to be alarmed at yet. Also, the slight urinary incontinence (when urinating only) continues. I am now in the habit of simply waiting and being sure the flow is done.

-The pain over the kidneys has subsided about 50% or so. (That's a real relief!...no pun intended...) I'm still extremely uncomfortable in bed, or when sitting back too long; but at least the obvious pain has gone down.

-The headache is ever present, and my ability to control it has begun to be an issue. More often than not, the headache is at an 8.5-9 nearly all of the time. Even with meds, it is still breaking through and causing me pain.

-Sleep has been as messy as ever. I never know when I'll be tired. Right now, I'm getting about five hours of "sleep" per day, plus between 3-6 naps of varying lengths. There is no pattern to the naps, they just happen. I am finally getting accustomed to the idea that I will fall asleep multiple times a day. I still don't like it; but at least I am less annoyed by how much I sleep.

-For the first time in my life I am developing bags under my eyes. I have no doubt this is due to the stress my body is under, as well as the exhaustion I feel 24/7.

I can't think of anything else to write today; so, that's it.

Good Health to All!

ScottW