2017 - May it get better!

[KarenInWA]

I've had an interesting new year so far. It started off with me filling my pill box after being awake for 22 straight hours. Instead of putting in prednisone 5mg, I put in furosemide 20mg! I'm only on that for edema as needed - which right now, it's not needed. I didn't notice this until the first Saturday of the new year - after taking the wrong pill for 6 days! Oops...

I callled my tx team and they ordered labs. I went in and did them and the results were decent - creatinine was 3.0 which is good for me (ever since my infamous botched biopsy of 2012). My hgb was a little low, so my tx dr sent a note to my pcp about that. I then went to my pcp office to do labs. No biggie. Except that later that day, my pcp calls me to tell me that my K is high - 5.5. But, she also mentioned that my creatinine was 2.4 (wait, what???). The lowest it's been since the botched biopsy is 2.8 - and I was happy about that!

Anyway, the very next day, my K was mean and was 5.6, so I had to get an Rx for everyone's favorite mud drink. I drank that for 3 days in the evening - Fri, Sat & Sun - talk about a fun weekend! Of course, throughout all of this, I have also been battling some dumb crud. It started the week after thanksgiving. It wouldn't go away, so I went in to see a different pcp on Dec 21st. Got 10 days of doxycycline for 2x a day. Began to feel better in early Jan, so went in for a massage on the 9th. Went to my endocrinologists office to finally get my Prolia shot started (tx for osteoporosis. There's a story there - I saw the dr on Nov 21st, but didn't actually get the shot until Jan 12th. Insurance companies are fun!  ). Then, sometime over MLK weekend, my crud rebounded into a nasty cough. Went back and saw a different pcp on the day after MLK Day (my dr's office is a Family practice. If your own dr is too busy, you can make an appt w/another one, or go to the walk-in clinic they have). He diagnosed me with viral bronchitis and prescribed me robitussin w/codeine.  Used that, and it worked for a bit, just not around the clock (I only took it at night for obvious reasons). I saw my pcp on Jan 30th regarding my lab issues, and she examined me for the crud. Gave me an antibiotic, a strong one that you take only once a day, she prescribed a 10-day course.

On Wed, Feb 1st, I had my annual follow-up with my tx dr (NOT the same dr who did the botched biopsy! That dr has moved on and is now in another state!) I told him about my crud, and that I was told that my oxygen levels were good and my lungs were clear. He examined me and heard something in my lungs. He asked me if anyone had ordrered a chest x-ray. Nope. So he, of course, did. (it's so nice that these dr's can order walk-in chest x-rays. I didn't even have to wait very long, and it was busy in that wait room!)

Thursday morning I woke up w/a fever of 101.1 and the results of my x-ray were up on the patient portal. It showed pneumonia. I called my tx coordinator and left a msg (it was 4:30am - I woke up at my normal work time thinking I was going to go in to work!) They called me back later and had me go to the ER for testing. I had a CT Scan, which the x-ray results recommended, which confirmed pneumonia. I did not have to be admitted because thankfully, I was not sick enough. They prescribed me 2 antibiotics (z-pack and another one). The ER called me later that night to let me know that the CT scan showed fluid around my heart, and they faxed a referral to cardiology to have me get an echocardiogram. I had that done today (Monday) and am now awaiting the results of it. The echo tech did tell me that it's a good thing that she didn't need to call anyone in, so that's a good sign!

I have an FMLA claim for work and am planning on going back on Wednesday, unless I hear otherwise. My scheule these days is Tues-Sat. I had taken Wed off to see my tx dr, so my claim started on Thursday. I am happy to report that I have had no fever since Thursday morning, and I feel much better today. I drove myself to the hospital, and I had to take snow off my car first! Thankfully, traffic was a breeze because a lot of people stayed home. My hospital is a university one, and classes at the U were closed, too.

But hey, yay for lower creatinine, right?     

KarenInWA

[Charlie B53]

Family around Yakima have been bitching about the Snow.  I really miss living in the NW.  Here in MO weather varies too much.  Cold, maybe a little snow, gone in a day or two, ICE for a couple of days, then 30's and 40's again.  Just strange.

Susceptibility to pneumonia is a bitch.  I have dealt with it a number of times since a kid.  I believe once you have had it your odds of re-occuring grow immensely.  We get sick for months but work our way through it, too stubborn to give in.  When I get it I cannot lay down in bed to sleep, I can't breath, I HAVE TO sit up or drown. End up sleeping at the dining room table on a pillow, sitting leaning forward in my chair.  Sucks to be me for a week.

I often have to wonder if the infection is bacterial or fungal.  Dr's don't reach in there to take a culture for the lab.  I suppose autopsy's have show what it has been.  Still, I wonder stupid stuff.  I ain't normal.

[cassandra]

O Karen I really hope you get better soon. Any results from the cardiologist yet?

Love, Cas

[SooMK]

Hope you improve soon. Doesn't that improved creatinine get you wondering about all kinds of things? Feel better.

[kickingandscreaming]

Yikes! Talk about being swallowed up by the Medical-Industrial Complex!  Here's to a speedy recovery. 

Pneumonia was the straw that broke this camel's back.  Couldn't breathe, was hospitalized and sent me over the edge from 6% kidney function to not-enough-to-survive % practically overnight.  Bummer.

[iolaire]

Sounds stressful... Good luck

[smartcookie]

Oh, man!  I hope you feel better!  I had bronchitis over Christmas.  By boxing day I had wheezes and crackles and had to get a chest x-ray.  No pneumonia, but I had some mild atelectasis due to all the yucky mucus.  That was painful enough!  I can't imagine pneumonia with fluid around the heart!

[MooseMom]

Good heavens, Karen.  It's only early February, and already you've been dealing with pneumonia and the mud drink???   

Still, you're right.  A lower creatinine is something to celebrate!

[KarenInWA]

I have good news!!! My echo results are normal!!!! Woot!!!! 

I'm going back to work tomorrow. I have 2.5 days left of my antibiotic as of this writing. Can't wait til I'm done with that, because it makes my stomach gurgle lol

KarenInWA

[MooseMom]

That's fantastic news, Karen!!!!   

Now, I don't want to hear any more such news from you for the rest of the year, OK?     That's just about enough for 2017!

[Rerun]

Glad to hear you are feeling better.  I'm going to start Prolia once my insurance approves it.  My V-D was low so he has me taking 2,000 mg of D3 for a month before I get (if) my shot.  If my insurance doesn't cover it I won't do it.  $1,500 A shot 2x a year. Not.

You had 2 inches of snow.  Over here we have 2 feet on the ground and haven't seen the ground for 50 days!  That is longer than the Noah Ark thing.

My Nephew just got his first job after graduating from Western in Biology at Fred Hutch in the infectious disease part.  Super proud of him.

 

[Charlie B53]

Mud Drink?

I used to EAT mud as a little kid.  Not any longer.

We got some really good gooey red clay mud here in Missouri.  Want me to send you some?

You can probably tell I am still very new to this Hemo thing.  Coming up on two whole months now.  Pd for 3 1/2 years I've been very spoiled.  Coddled maybe an applicable term.  I had it easy peasey compared to most of what I've read from all of you hard-core Hemo survivors.

I have problems just thinking about the size of those needles.  Shivers.

And now ya'all talking about drinking MUD?   Can I used the term WTF?

[Rerun]

I shouldn't guess... but usually with a high potassium they prescribe Kayexalate (Sodium Polystyrene Sulfate) makes you poop.

It blew a hole in my intestine so I won't take that "Mud" ever again.

            

[KarenInWA]

Yes, Rerun is correct. I had to drink the Kayexalate.

I'm not on HD. I was on it for 7 months back in 2011, from April thru November. I received a live donor tx on Nov 23, 2011, which was then damaged by a biopsy in early April 2012. My function has been low ever since, but I do not need dialysis. This is the first time my K has been high. Thankfully, it only took 3 doses of "the mud" to bring it down to 3.8. It was 4.1 last Wednesday when I saw my transplant dr.

KarenInWA

[Rerun]

So now you have to be on a low K diet, or was this just a fluke ??

[KarenInWA]

So now you have to be on a low K diet, or was this just a fluke ??

Thankfully, no, at least not at this time. I will be getting labs done either later this month or beginning of March and will go from there. I see my regular neph on March 7th. The lab results from my tx dr visit showed my K at 4.1.

KarenInWA

[Jean]

ReRun.... It blew a hole in your intestine??? Are you serious??? Did you have to have a colostomy???   OMG, you can not imagine my shock when I read this.

[nursey66]

There are easier ways to get rid of potassium , chew up some suger free hard candy , the kind with sorbitol in it !  Works amazing. My husband used it when he was on dialysis,  it lowered his potassium, and his Neph was OK with him using it. 

[Charlie B53]

How can or does the sorbitol remove potassium?

Is that the same fake sugar used in the sugarless gummi-bears that cause diarrhea in many people?  Is it this diarrhea that causes the potassium loss?

I still need to understand more about this
Mud', I still don't know that word.  Is it the mud that absorbs potassium or does it simply cause diarrhea which flushes the potassium out of the intestines before it can be absorbed into the blood stream?

If it is the mud absorbing the potassium then wouldn't very small dose used daily be an option?

The body is a marvelous organic machine, but simply a machine none-the-less.  We simply have not figured out how all the parts interrelate to function.   An amazing piece.

[okarol]

So glad you're doing better! May it continue! 

[iolaire]

There are easier ways to get rid of potassium , chew up some suger free hard candy , the kind with sorbitol in it !  Works amazing. My husband used it when he was on dialysis,  it lowered his potassium, and his Neph was OK with him using it.

My dentist told me to chew sorbitol gum to have a heather mouth so there might be additional benefits.

[Charlie B53]

I suspect the Dentist recommendation to chew the sorbitol gum was simply the stimulation of the gums and the cleaning of the teeth with a NON-sugar gum.  I doubt the sorbitol was anything other than a sugar substitute.

But again, just my semi-educated guess.

Cleaning and stimulation of the gums are VERY important in maintaining healthy teeth and gums.

Many Dentists will tell you a healthy mouth is critical to maintaining overall body health.