Friday, October 30, 2009

30 Oct. 09

My brain is definitely clearer.

No more dizziness. No more light headedness. No more minimal eating every day. That Benicar was really throwing me for a loop!

My sleep is better, and I'm tired much sooner that I had been. Things are getting back to normal. Woo-Hoo!!!

I'll start taking those other meds in a day or two more. I'm enjoying a clear head and having energy!

Good Health to All!

ScottW

Wednesday, October 28, 2009

28 Oct. 09

Had my Nephrology visit yesterday. Here's what happened:

-My BP is excellent at 120/84 both standing and sitting. That's outstanding!

-After discussing what continues to go on with my meds, I am off the Benicar all together. Once that is out of my system, I'll start taking another med called Amlodipine (sp?). I'm told it is benign other than possibly causing edema in the legs.

-The doctor is also going to place me on Sodium Bicarbonate tablets to help with possible toxin buildup in my blood. This in turn will help me to have more energy so the malaise will (hopefully) be a thing of the past.

-My doctor wasn't surprised at my smelling ammonia. He said he sees it every once in a while. This is a result of toxins in the blood. The sodium bicarb may help to reduce this, as well.

-My lack of appetite was expected. It's just a part of the disease. As I feel better and as I get more active, my appetite should increase [though I may not return to my previous food intake].

-Lastly, my labs were only very slightly worse than a month ago. In other words, the disease has progressed, but very slightly. The doctor was not alarmed by anything in the blood work...which is great!

So, my first month of baseline numbers has been established, and things are about the same as last month.

I am looking forward to getting my head cleared up and out of the perpetual fog it has been in. Hopefully I'll be able to start working out soon. That would be awesome!

Good Health to All!

ScottW

Monday, October 26, 2009

26 Oct. 09

I started back up on the Benicar on Saturday. I have also returned to feeling dizzy and nauseated most of the time. Even though I'm on a half dose, the effects are still kicking my butt.

I've got my scheduled Dr's appointment tomorrow. I've got my list of things to talk with him about. For sure I need to do something about my meds. I'm being relegated to a life at home right now, and I definitely don't want that. Too much to do. Too much to do.

I forgot to mention that during my visit last week I asked if taking vitamins was OK. The doctor asked specifically what type because he's had patients who take handfuls of all sorts of shapes and sizes [of whatever things they take] thinking it does a load of good, when in actuality the kidneys (apparently) have to work harder to filter all the stuff they ingest, thereby actually causing harm to their already damaged kidney's.

Anyway, I assured him I wanted to be taking a 1-a-day vitamin, which he said was fine. So, in spite of eating insufficiently, I'm getting all the essential nutrients I need on a daily basis. Getting enough food is another matter; but at least I've got the essential metabolics taken care of.

Also, I should know tomorrow the results of my recent lab work. We'll know if any disease progression has occurred. I'll be sure to post any relevant information.

Good Health to All!

ScottW

Saturday, October 24, 2009

24 Oct. 09

Alright...I cheated.

I haven't put myself back on the Benicar simply because I'm enjoying being fairly free of the dizziness and malaise. It's bad of me, I know; but I've had a month of feeling like poo, so having this little break has been nice.
I'm planning on resuming the half dose tomorrow.

I've decided that I am too far behind in my studies to catch up. I'm going to withdraw from the current semester. It's not ideal, but I've missed five of eight weeks worth of work, with just six total weeks left in the semester. Luckily I'll be able to avoid a hit to my grades (and GPA) by using a medical withdrawal.

Not much else today.

Good Health to All!

ScottW

Wednesday, October 21, 2009

21 Oct. 09

I eliminated the Benicar today (as planned). Not much different in how I'm feeling, but I'm sure I am at a therapeutic level and it will take a few days for any effects to be seen.

Have felt sluggish all day. After having had 6.5 hours sleep, I was up for about three hours then slept another four. I really wish the fatigue and malaise would vamoose!

Also had another spell of intense cold. I wrapped up in three blankets to get warm...which took nearly an hour to be. I am writing things down to discuss with my doctor during my appointment next week.

And that's about all today.

Good Health to All!

ScottW

Tuesday, October 20, 2009

20 Oct. 09

The dizziness, etc. continued throughout the day.

My Nephrologist asked me to go in to do a BP check. When I arrived, he had scheduled me in for an early appointment to address the med side effects. We went through a number of tests and questions to see if there were any contributing factors--none were relevant.

My BP today is 140/80 (sitting) and 122/84 (laying). So my BP is under control...a very good thing!

Then I was laid in a recumbent position for five minutes, then stood up. I immediately got overwhelmingly dizzy, nearly blacked out, and luckily had two doctors there to keep me on my feet--otherwise, I would have crumpled to the floor! (not so good!)

In the end we decided to go completely off the Benicar for two days; then starting Friday go on a 50% dose. Hopefully this works so I can get back to life. I'll know in a few days. Also, I've got my scheduled appointment with my doc next Tuesday so if things are still off, we can address it right then.

Had to do a re-draw on my blood work I did yesterday because whoever inputted the orders into the computer, they listed a Hepatic panel instead of a Renal panel. No big deal. It happens. What's another needle stick or two?

Lastly, I have gotten the chills twice in the last three days. I'm talking in a 70 degree house. The first time I was so cold I was actually shivering and it took about half an hour to warm up. For me, this is not normal. My Hypothalamus works overtime--all the time. I can go without a coat on a windy, 25 degree day. This happening may only be an adjustment by my body to the lower BP. I'll be discussing that with my doc next week.

Good Health to All!

ScottW

Monday, October 19, 2009

19 Oct. 09

Still feeling lousy today. No improvement over yesterday. I've got a call in to my doc to see what can be done. I'll let you know what'll be happening.

Also had blood drawn today for my baseline testing. I have another appointment with my Nephrologist next Tuesday. I'll know the results of the bloodwork then.

Schoolwork continues to slip because of the side effects. Am trying to contact all my teachers to see what we can do to keep me current.

That's all for now. If anything changes I'll get it posted.

Good Health to All!

ScottW

Sunday, October 18, 2009

18 Oct. 09

A terrible day yesterday.

After so many [relatively] good days, I take an unwanted step backwards.

I spent most all of yesterday feeling like the whole world was spinning, and getting so nauseated I almost threw up a few times. Don't know why this would suddenly happen. I haven't been doing anything different that might precipitate this response. So, I don't know if it's the meds, the disease, or something else entirely. Hopefully, today will be a better day!

Good Health to All!

ScottW

Thursday, October 15, 2009

15 Oct. 09

Today was not much different than yesterday. Still extremely tired. I'm going to call my doc tomorrow to see if anything can be done about the tiredness. I have things I both want and need to be doing, and being constantly tired is getting in the way.

Still am having zero identifiable side effects from the Benicar. I think it is now safe to say that I'll be having none of the nasties I listed.

Had my blood pressure measured yesterday. Much better!

Standing: 132/82
Laying: 118/80

Those numbers are tons better than the 185/130 I had during that physical in August. I'm sure my doc will be pleased by the progress on the BP.

No new S/S's of the PCKD have become evident. I'll keep you posted if I do start seeing more symptomology.

Good Health to All!

ScottW

Tuesday, October 13, 2009

13 Oct. 09

Still feeling very tired from day to day. I spent most of today sleeping; plus I was up most of last night extremely nauseated. So, it hasn't been the best of days for me.

Also, over the past week I've noticed my navel beginning to protrude and enlarge. Makes me wonder if I'm showing signs of "becoming pregnant" as my doctor has stated I would. By this he means my stomach will enlarge and my navel will look distended, I'll have back pain (well...more than I usually do), my pecs will enlarge a/o become tender, and I'll show peripheral edema mostly in my lower legs. So, my navel has definitely enlarged, which makes me wonder if another S/S has evidenced. If it is, I'm not surprised given the fact that I'm in advanced stage 4 with absolutely zero S/S's up to now. Sooner or later the body becomes unable to compensate...it is an inevitibility; and it may be starting that inability to compensate.

I'm not getting discouraged by anything other than missing classes. My professors have been extremely understanding, and are willing to work with me; which certainly helps.

I'll look to have a better sleep tonight, and a much better day tomorrow.

Good Health to All!

ScottW

Monday, October 12, 2009

12 Oct. 09

One week now since I was taken off the Diovan. And I am ecstatic to report that I have Zero side effects [from the Benicar], and that (again) all the side effects from the Diovan are gone! Woo-Hoo!

Additionally, my sleep is getting turned around to where it should be. Am looking to get back to school on a regular basis either tomorrow or Wednesday.

That's all for today. Just wanted to share this wonderful news!

Good Health to All!

ScottW

Friday, October 9, 2009

09 Oct. 09

I've been on the Benicar now for four full days.

The joint pain I experienced with the Diovan is pretty much gone. The extreme dizziness, too.

I am having zero apparent side effects with the Benicar. They may yet show up, but at least I'm far enough into the dosing to know that my chances of having any side effects diminish with every passing day.

Still feeling tired; but this may simply be a S/S of the PCKD. No worries there so long as it doesn't interfere with what I want to do from day to day.

I am still smelling the ammonia, though. Not constantly...but frequently enough to be concerned. I especially notice it immediately after I've burped (on an empty stomach)--then it is pretty strong. I've got some inquiries floating around "out there" that should provide some sort of answer.

I found a site that does a good job explaining the generalities of Chronic Kidney Disease. It is by a physician associated with the University of Rochester Medical Center. It has a PowerPoint presentation on all sorts of facts regarding CKD. It also covers various pharmacology's, their chemical makeups, etc...Technical stuff most of you will have no clue about. But take a look anyway. You might find some info you didn't know. The address is:

http://www.thedrugmonitor.com/RIT2007-SLIDES.pdf

Good Health to All!

ScottW

Wednesday, October 7, 2009

07 Oct. 09

Quickly today...

I found out today just how sleep deprived I was (due to the Diovan). I got 8.5 hours of sleep last night, was up for about two hours, then fell asleep and was out for another seven hours! A bit over tired, eh? (and I'm still yawning tonight!!!)

Still no obvious side effects from the Benicar. Another day or so should indicate if any will show up.

That's all for today. (See? I said this would be quick today...)

Good Health to All!

ScottW

Tuesday, October 6, 2009

06 Oct. 09

Well, after one day on the Benicar I can report that I've had few side effects thus far. A little bit of dizziness going on most of the day, but nothing too bad. If I'm going to get any side effects it will probably be a few days before they show up.

Had my weekly physical therapy today (for my back). I see a chiropractor for my PT. In Utah all chiropractors have to be MD's. In addition to all of his medical knowledge, my physical therapist uses alternative healing practices in his treatments. My usual PT routine consists of E-Stim followed by Acupuncture (and micro current), chiropractic adjustment, and occasional Chi balancing.

Last week he was telling me that he has used FSM (Frequency Specific Micro current) to successfully treat ovarian cysts. I thought, 'OK. The worst that will happen is nothing.' So, we started that therapy today with an electrical frequency specific to kidney's and polycystic disease. This is a long-term treatment, so there won't be any miraculous results in a quick fashion. Any improvement of kidney function or lessening of the sheer number of cysts would be a good thing. And if if doesn't work, I haven't wasted anything. It's worth a try!

**If you are thinking of doing any alternative treatments please be sure the doctor treating you is certified and up-to-date on the procedures. My doctor (for PT) is constantly learning new treatments, going to recert courses, and researching the benefits of the treatments he uses. Before you decide to try any alternative treatments you must consult with your primary physician before starting! I did...he (my primary physician) advised against one therapy (which I'm not doing), and left it up to me on this one.**

Still not regular about getting to classes. Side effects have been kicking my butt. Hopefully most of the things I've been experiencing were due to the Diovan; which would mean I could get back to my normal routine; which would be really nice! I'll be sure to let you know.

Good Health to All!

ScottW

Monday, October 5, 2009

05 Oct. 09

Just as I thought my doctor is taking me off the Diovan completely. (Yay!!!!)

I've been given Benicar (olmesartan medoxomil hydrochlorothiazide). It as an Angiotensive II receptor antagonist. The dosage is 52.5 mg's/day.

Side effects from Benicar could include:
-Nausea
-Dizziness
-URTI (upper respiratory tract infection)
-Abdominal pain
-Chest pain
-Back pain
-Vertigo
-Coughing
-and possible Rash

Sounds like fun! :o( We'll see. My history of side effects indicates I could have a few of these unpleasantries show up; but like always, I look to be positive that none will appear.

At least the joint pain that keeps me awake will be gone in a day or two. So on we go...to better things ahead!

I will be sure to keep you updated.
Until then...A most pleasant of days to you! :o)

Good Health to All!

ScottW

04 Oct. 09

(Late Evening)

Today was my third day on the reduced intake of Diovan. I'm happy to report that the joint pain was greatly reduced...until this evening when it flared up anew. I'll be calling my physician tomorrow to discuss our options.
More than likely we'll be switching meds. I'll be sure and let you know.

Also, getting back to the dizziness thing, I've noticed that any time I look around a lot, changing focus a lot that I get dizzy. I've had plenty to eat today, so I know that is not the issue. I'm hopeful that this is just an intensified side effect from the Diovan; and if I go off it, the dizziness should subside.

Still smelling ammonia now and again. Still weird that I can.

Finally, am getting lots of emails full of love, good thoughts, and support. That really helps me move forward knowing that I've got such wonderful people around me. Still lots of symptomology to go through, but at least I've already got a terrific support system in place.

Good Health to All!

ScottW

Saturday, October 3, 2009

03 Oct. 09

[Not that I expected it to be any different but,] After one day on the reduced dosage of Diovan there has been no change. All my joints were in discomfort; and my legs in particular were on the edge between extreme discomfort and painful. It woke me from sleep. Had to take five Tylenol to get it reduced enough to get back to sleep. Hopefully a second day on the reduced dosage will result in less pain.

Am finally sleeping better (overall). My brain just needed to process the news and deal with it at the subconscious level. Thank goodness it's done!

At this point I've pretty much let all my friends and family know what's going on. Nothing but support and comfort from everyone. Have even had four offers of kidney donation from various friends. What wonderful people to have in my life!

Good Health to All!

ScottW

Friday, October 2, 2009

02 Oct. 09

Two things this morning:

1) Having enough food in me does affect the level of dizziness. The last two days I've made sure I've had regular meals plus a few snacks, and the symptom has decreased significantly. This has been difficult to accomplish in light of a decreased appetite which I can only attribute to the meds. But, I've found a solution; and I don't really think I'm eating any more that I was prior to going on these meds.

2) The joint pain has gotten so bad that I have not been able to sleep very well, or for very long. I contacted my physician and we are cutting back on the Diovan by 50% dosage. If my joint pain is not better by Monday then we'll likely go with another med.

Also, for about the last week I've had the faintest sense of smelling ammonia. This is entirely new. There isn't any in my house, I'm not around any, and yet I smell it at various times. I'm talking while in my car, at school, in the shower, walking outside, wherever. It's weird...and I'll be the first to say that. I may be simply be imagining it; I just don't know. Like I stated in an earlier post, I want to avoid conjuring up symptoms that don't really exist, so I just don't know what to make of this. If my smelling ammonia continues, I'm sure I'll be chatting with my doc about it.
If I find out more I'll let you know.

Good Health to All!

ScottW