12/20/2010

update to creatinine levels

Posted Dec 20, 2010 6:24pm

Okay, so the RN called and the creatinine is up to 6.2. The potatsium is also high, I don't know how high but all the other numbers look good. Walt has eaten a lot of bananas over the last few days due to the cramps so that doesn't shock me.
The plan is, set up dialysis but no need to start unless he starts to have symptoms. They want to avoid an inpatient episode. The up side to that is that dialysis may only be temporary, and the kidney may 'kick in' as the rise in creatinine may still be from the procedure.
We retest, and retest and take it one day at a time. He looks less retentive today, his ankles are good, his eyes are only puffy when he first wakes up.. but so are mine!

Anyway - that's all I have for now. Brad (BJ) is coming home tonight. This will take a lot of stress from me, as we will have another adult in the house :o) and he'll be home for Christmas!

More later as we find out more...

Thanks for they prayers, good thoughts, and notes of encouragement.

~Susan

12/20/2010

no news

Posted Dec 20, 2010 4:53pm

sorry, no news yet - I put in the request to the RN to text me with the results as soon as she can. Today is clinic day for the transplant team, so it may be a bit longer :-(

12/20/2010

Another quiet day

N

Posted Dec 20, 2010 12:24am

Today started out gloomy and rainy outside, and the mood didn't get a whole lot better inside. It was a day primarily spent inside watching cartoons and little football.

We got a break in the weather where the sun came out and the kids quickly put on their shoes and ran outside. Joe jumped on his wet bike seat and Kasie found the muddiest part of the yard to jump in.

Since we've taken 5 or so trips to Sacramento in the last 2 weeks, I used the break in the weather to sort of organize the car again. There were water bottles under the seats, coats left behind, and the extra soda cartons that I just haven't found the time to bring in.

I think Walt and I have now come to terms with the strong possibility that he will be going back on dialysis. When I see him as sick as he is now, I wish is was already set up. Earlier today, he looked like he was so tired, he was puffy in the face, his ankles are still swollen and he's fighting the muscle cramps. He gets cramps in his legs pretty bad, enough for them to wake him out of a deep sleep. He got a little nap in this afternoon.. in his favorite spot - right in front of the wood stove.

Our oldest son is on stand by, and ready to come home if we get the word that dialysis needs to start. It will be nice to have another adult in the house. When we have to leave at a moment's notice, it's good to have someone here to watch after the kids and know that they are in their own beds. Our house is small, but we make the best of it. We bought the house when we only had 1 child, not expecting to have any more.

So, tomorrow is what I would consider the telling day. Walt has stat labs in the morning, and he'll go around 9am. He has to do labs at 12 hours after his last dose of Prograf.. they monitor that level as well, so it's a coordinated effort to make sure he's not registering too low, too high - the 12 hour mark is very important. We should hear something about his creatinine around 1pm, probably sooner but for sure by then. There is that glimmer of hope that his kidney is working, but I am prepared to hear whatever news we get. I say that now, tomorrow may be a totally different story. Walt is staying strong and I think he's come to terms with the prospect of beginning treatment, but this time it will be much different. When he is hospitalized, he always has a private room because his immune system is suppressed. He can't be mixed in with people who are contagious, and the dialysis center is crawling with microbes.

Anyway, we'll post the results as soon as we hear anything.

Here's looking to a positive week.

~Susan

12/19/2010

To a Ho Hum Saturday

Posted Dec 19, 2010 4:33am

As Susan pointed out, today has been a of being in PJ's till 3PM. The Rain and windy weather has provided all the gray outside and and some on the inside here at home. I do nap during the day as Susan pointed out that may have something to do with not having a good nights sleep. I find that I may fear NOT waking so I nap instead, from which I always awaken. I fear sleepapnia the most. To stop breathing is just plan scary my snoring got less but I have noticed that I fight for a breath in the middle of the night sometimes. If it's like 2 or 3 AM I will generally stay up and watch TV, mostly Discovery SCI Ch (284DTV) or my personal fave is Boomerang or Cartoon network to get my mind off that feeling.
I'm still a big kid at heart. Yes, a cartoonaholic as it were.

Am I scared about going back to dialysis? Yes. Yes I am. The thing about it is the treatment time and the need to be isolated from the other patients. Even though my kidney is not doing well, I still have a suppressed immune system and take meds so the organ is no rejected. There is still function as to urine output just not what it should be. I need to be kept separate from

It is what it is. Bitching about it, gains nothing. It is a waste of time
and energy. Energy is best served by using it to get through each day, Lord willing.

Will give the page a gingle on Tuesday..............Walt

P.S. Thanks everyone for your support, thoughts and prayer. Jill and Christine;
Thanks for yours and the teams support of Susan. She has been my rock through all this and while I can't pick the phone and tell the "team" how I feel about the generosity, through Susan's affiliation it is such an honer to know everyone though it is by your words and Susan's relay to that end that I feel everyone on the UPCT and PHS have been great. If you could relay a word of thanks on my Family and my behalf as appropriate, I
thank you, and Happy Holidays to all!!!

12/19/2010

Somber Saturday

Posted Dec 19, 2010 2:24am

Well, I would be lying if I said the house had a lot of optimism today. Walt was sleepy most of the day, although his color looks good he's just tired. We can contribute it to him not sleeping well but I think that's wishful thinking.

I had a minor breakdown today. Since the day we found out that Walt's kidney was failing, I've had this sick feeling in my stomach. It comes and goes but it's there. I left the house today to go to the store by myself and found myself crying like a three-year-old. You know, the kind where you take a bunch of short, rapid breaths in but the exhale lasts forever. Yep, the seriously uncontrollable crying.

Walt is obviously holding water, his eyes are puffy, his ankles are swelling.. it's just obvious that he's overfull of fluid.
He mentioned earlier tonight that he could taste the exhale of ammonia, which was something he tasted when he was on dialysis. Not sure if that's a result of the increased blood values or just that he thinks dialysis is right around the corner. When he told me that we hugged and he comforted me! It really should have been the other way around but he's certainly taking this whole thing much better than I am.

I remember back in 2004 when we were told that Walt would start dialysis treatment and I was devastated. We had driven to the nephrologist office in separate cars because I met him there after work. I felt so alone driving home, but I called my Mom immediately. It's like when you tell your Mom, it makes things more bearable. That feeling, that day feels like just yesterday. I talked to my Mom today, but she didn't talk back.

Today was certainly one of my weaker days, I put on the face for the kids but I could have done a better job. I did a little (very little) Christmas shopping and I just couldn't seem to muster the energy to do much searching or thinking about wrapping etc.. Walt consoled me today which is a little backwards, but he patted my back and said "I've been down this road before, I know what it's like". I can't believe his strength.

Nothing else to report today, we won't have definitive results until Monday afternoon but I'll update with how he's feeling if he doesn't beat me to it.

Hug your loved ones, tell them you love them and don't wait another minute holding on to things you want to tell them.

~Susan

12/18/2010

More about today

Posted Dec 18, 2010 1:38am

The kids had their yearly Holiday 'sing' at school today. Joe and his Kindergarten class sang and signed Twinkle Twinkle Little Star. It was adorable. The stage full of 5 year olds was quite a sight. Joe decided he wanted to wear a shirt and tie to school today instead of a Christmas sweater, so the shirt and tie it was. Who am I to crash a guy's style?
Kasie and the 4th grade class sang Feliz Navidad. She stood up there so tall and proud and not only sang every word but smiled the whole way through it. She is a performer I'll tell you! She got to wear high heals to school today (okay, they are actually a wedge but she felt pretty darn special).

As my earlier post shows, the creatinine level is increased to 5.9. He's up almost 2 full points since last Monday when the procedure was done. I'm not sure if this is completely expected or not. I know we expected the increase but I don't know if it was more than what's in the expected range. The BUN has climbed also up to 67 which is about 3x what it should be. Phosphorus is climbing as well, these are all very clear signs of kidney failure. But, the one Nephrologist who is normally ready to admit Walt at the slightest temperature change said 'we wait'. I'm not sure if they are watching the numbers closely thinking they will go down, or trying to push the envelope so that any type of treatment is put off until after Christmas. I'm sure it's not the latter since they are trying to protect his health. But of course, I always wonder.

I have to hand it to Walt, he is staying steady and strong. I can tell his is disappointed at all the results and is doing everything he can to turn this thing around. He's always been such a trooper, not complaining about the poking and prodding. He takes his meds like he should and makes the adjustments as told. He's putting on a very strong positive presence and I admire that so much. I am reminded every day why I married him.

We decided that given the news we got today, we needed to cheer ourselves up and go searching for Christmas displays. We saw some pretty houses but nothing spectacular to note. It's obvious that the economy has many people cutting back. We do go to one house that combines music to the lights and it's just an amazing display. In pure Pennington fashion, we showed up at 9:10 and the display stops at 9:00. We will try again tomorrow.

Anyway, that's all I have for tonight.

~Susan

12/17/2010

fridays lab results

Posted Dec 17, 2010 8:48pm

Just a quick update - creatinine is up to 5.9 (normal is .9-1.3) not the direction we wanted but the increase is slowing down. More labs Monday and we'll take it from there.
More later.
~Susan