12/16/2010 Susan update

Yo-Yo day

Posted Dec 16, 2010 8:02pm

No, not the duncan kind. I've talked before about the ups and downs of this journey as we go through the weeks, but today had it's own ups and downs.

We were somewhat hopeful that the lab results would show a slight increase in creatinine, but it was up to 5.3 which is about .7 more than I expected to see. The BUN is holding steady at 57 or so, which is still high but it's not climbing.

I got the lab results via text which was pretty tough to look at, and had to be the one to tell Walt. As I said, we were expecting bad news, but not quite that bad. We were asked to come to clinic right then and I simply asked what's the point, what's the plan? The response was "the plan is to start dialysis". So looks like I was not too far off on my estimation of when it would start. After further discussions with the director of transplant center, she didn't expect to see his numbers drop right away. The new plan is to drink lots of water and continue to test. Personally, I don't think his numbers will change drastically until next week.
Walt looks better today than I've seen him look in weeks. He says he feels better too, in fact he didn't nap all day so that itself gives me a little insight as to what's going on inside.

We've decided not to tell the (younger) kids exactly what's going on until after Christmas. There is no need to spoil one of their favorite days. What they know is that dad has to go to the lab a lot, he goes to clinic a lot and that's it. He puts on his happy face, musters the energy to be upbeat with the kids and so will I.

Walt is doing his best to drink as much water as he can, which could really impact his numbers. He's like an overfull sponge, but he continues to drink. We have agreed to approach the next few days with cautious optimism.

I wanted to get this posted before the kids come home - cause that's the end of the health stuff for today. :o)

Enjoy one another!
~Susan

12/16/2010 - Walt update

Labs are back (;0(

Posted Dec 16, 2010 12:51pm

The first set of labs have been returned and I have reached stage 5 kidney failure. While this news is not anything we want to hear, I will not be starting Dialysis as of now. The procedure has not had enough time to show a trend of the Creatinine level. So for now we or I just need to keep doing labs. Just pray it goes down. I would be happy with a 3. The Kidney wont last as long but it puts off dialysis for a few years.

12/16/2010 - Walt update

Yea! I can make updates too

Posted Dec 16, 2010 12:13am

Susan told me about 10 mins ago that my daughter told her, she wishes to have the lab, surgical procedures and all the other bad stuff that I go through and endure the down side of all this stuff for me. I am truly blessed to have my daughter do that for me. I am speechless beyond that.
Thank you one and all for your well wishes and prayers. They go a long way to help ease the stresses of the day. THANK YOU!
Happy Holidays to all.

Walt

12/15/2010

No new news

Posted Dec 15, 2010 11:26pm

The RN ordered stat labs yesterday, and Walt had a few things to do today, so his labs were late. He had a Dr. Appt with his PCP, needed to order some meds, and tried to pick some up from the pharmacy, pick up this child, pick up that child... so very busy trying to make up for the last few weeks of neglecting stuff.

We haven't received any news from the lab results as we expected, but since he didn't do his labs until about 1 pm or so, we figured we wouldn't hear anything until later tonight.

The last few weeks have taken quite a toll on us, all of us - kids included. We're functioning with less sleep than we need and we're hurrying up to wait and believe it or not, we've never been closer. Normally this kind of stress would make our house an angry circus but for some reason, we all have this resolve that we're going to get through it, and all come out in one piece.
We've tapered down the Holiday activities this year since we have all this other stuff going on - this is not the year any of us want to be sick, and big gatherings, outings and such are a great start to any cold/flu.
The kids were great about getting their flu shots this year. Walt can't have the flu shot so both the kids agreed to get the shots to make sure we don't infect Walt. I try to get one every year, but the first 'drop-in' flu clinic I found, Kasie and I rolled up our sleeves and got our shots.

So, for tomorrow we expect some results. I don't expect them to be good, so I don't think I'll be too surprised if they tell us his creatinine is up to 4.6 or so. I will be more interested in the lab results from Friday's labs. Of course, I'm not the doctor but I would think Friday's would be more insightful than today's. I guess that's why I didn't go to Medical school.

I hope you all are warm and dry, enjoying your families as much as I am enjoying mine.

~Susan

12/14/2010

Still resting

Posted Dec 14, 2010 10:38pm

Walt did his level best to rest most of the day, although I would be lying if I said he needed a lot of encouragement. I can tell his Creatinine and BUN are high because he just has no energy, feels crappy and wants to sleep all the time. I can only imagine how he must feel. I equate it to having poison running through my veins and that's a little unnerving.

Technology is a wonderful thing, from this website to cell phones. The transplant coordinator and I keep in touch mostly via text and she sends orders to me. LOVE IT. We got word this afternoon that the Nephrologist (kidney specialist) wants him to do 'stat' labs tomorrow morning. I asked the RN if they expected to see improvement or if they were looking for declining function. She said both but that she expects the creatinine should be elevated due to the dye from yesterday's contrast. So, we should get results sometime tomorrow afternoon. That will determine if we need to go back to Sacramento on Thursday. Honestly, I don't know why we would have to but that's the plan. The way they were talking last week before the ultrasound, there was nothing really to do except monitor his numbers and provide the local dialysis center/nephrologist support.

I don't really think we'll know anything positive until next week, I think if we hear anything soon, it will be not so good news because the kidney function can't recover that quickly, but it can decline that quickly.

Kasie told me today when she got home from school that she wishes she could do some of the tests or surgeries for her dad. She said "Mom, he's been through so much". Wow I really didn't know what to say. Sometimes I think my kids are sad about their dad's illness but then I think back, and the two youngest have never known anything else. Brad, the oldest got to have his dad well.. and he's old enough to understand what is going on and how well his dad can be.

If this procedure worked, we are planning a camping trip which is something we haven't been able to do since 2004, when his kidneys failed. Being outside, enjoying the surroundings is something we really miss. We couldn't go this summer because of his immune system, so by next summer his immunosuppressant drugs will be decreased.

So, we wait again.
We're all going to cuddle up and watch a Charlie Brown Christmas special and forget about all this health stuff. It's time for family now.

Good night!

~Susan

12/14/2010

Posted Dec 14, 2010 1:01am

What a day it's been!

As I posted earlier, the Radiologist was less than optimistic about improving Walt's renal function with this procedure. In fact, he was pretty positive that this procedure would worsen his condition. His diagnosis was marked ESRD again, which we haven’t seen in 10 months. It was a little alarming.

The procedure required a contrast dye which can in rare cases cause renal failure in patients with healthy kidneys. So, in Walt’s case the possibility of complete renal failure was something we needed to consider before we moved forward. We both were under the impression that if this wasn’t done that dialysis would be right around the corner – like 4 to 6 weeks or so. It was a scary decision, but Walt felt it was best that we try even if it made the inevitable happen sooner. They did all they could to lessen the impact on the transplanted kidney which involved using a diluted dye and adding bi-carb – I assume it’s a balancing agent much like alka-seltzer. .

We insisted that he speak with the transplant team, specifically the vascular surgeon who reviewed the preliminary results. His bedside manner never improved in my opinion, but Walt said he was very personable in the room. My sister told me a long time ago, you don’t really need a doctor to have a good bedside manner, you just want him/her to be able to do their job.
I was never able to speak to the doctor, as with my luck, the one time I left to use the restroom, he walked in. Originally, the doctor said if he put the coil in, it would completely block the vessel and therefore stop any blood from getting into that portion of the kidney but my understanding was that blood was bypassing the kidney and going back into the venous supply without being filtered. I couldn’t seem to get that point across to the doctor, or ask it in a way that he understood my question.

The aneurysm was evidently pretty large and it may very well be the case that a lot of the blood supply was bypassing the kidney. Walt will go in on Friday for a renal panel (blood tests) to see what his creatinine shows. We are looking for something 4.0 or less.
It will be a tough few days awaiting the tests to see if this did the trick.

I’m sure I droned on and on so it’s probably time to pour myself into bed.

Much love
~Susan

12/13/2010

doing well

Posted Dec 13, 2010 5:23pm

Walt is still resting comfortably. He's restless which is normal. It's hard for him to lay still for any amount of time, let alone lay flat. I think he has another hour or so of flat then they can begin raising his head. Man this has been a day!!!

No word from the doctor yet