Sunday, February 06, 2011


It's amazing how calm I am when I KNOW what it is! No, the idiot doctors did not tell me, but I simply entered all the things that are going on and it's uremia. And he's probably had it since Tuesday. Drowsy, sleepy, difficult to arouse them from sleep, inability to think clearly, memary impaired, disoriented, confused, slurred speech, no speach, twitches, shaking.

That or dialysis disequillibrium: nausea, emesis, blurred vision, muscular twitching, disorientation, tremors......

Either way, I will ask the doctors today because I just do so much better having an answer. And I understand their unwillingness to make a diagnosis of either of these in ICU. They did back-to-back dialysis, less than 12 hours apart. Pulled off 6 liters of fluid, in addition to the 2800cc that was pumped from his stomach yesterday.

I have absolutely no idea what today will bring. I could not sleep last night so I was up researching all night long. My adrenaline has kicked in again. I'll be fine! Gotta love those adrenaline rushes!

My girlfriends came over and brought comfort food. They actually googled it. Mac & Cheese and mashed potatoes. Is that a hoot? Choc chip cookies, chicken, corn....they did me good, with enough to keep in comfort for several days.

I finally realized yesterday....or finally "got it" that my friends NEED to help. They so desparately want to do something, so starting today, I will ask. I have someone bringing their puppy over for playtime with our puppies this week. Someone taking care of getting rid of the snow. Planning a craft evening with art pals.

So uremia. Pretty serious, huh? I know. I know he can bound back from it. I know he can die from it. I know he may be on permanent dialysis - which he has said repeatedly that he will not do. I know that if he doesn't, he can come home and be dead in a few days, weeks or months. I did more research last night than I've done in ages, but I am so much better prepared. Knowing the process of ESRD....that they go into a coma, not quite so bad as anything he's been through this week.

Today, my goal is to just get through today. Pretty simple. Keeps me from thinking about the future. Keeps me from thinking about the past. So many people all around the world are praying for him. I've made his brother the contact for his parents so I don't have to talk to them - huge relief! I have picked one of his employees for that group, and my sister that is here with me is taking care of the rest of the family updates

I have an aunt who is a critical care surgery RN and she called me last night and went over everything. Said that they might put him on a Bipap machine to force oxygen into him. I so appreciate her letting me know. Again, education is so much better than surprises!

I still believe he can turn it all around. He could get out of ICU even today! As impossible as that sounds, he's done it in the past. When I had the least hope....he turned things completely around.

Finally, I know how difficult this is for those who fear they will be going through it in the near/distant future. But on the other hand, I hope there are those reading my journal that think this will never happen to them. You are the person my husband was up until about 5 years ago He was in denial the first 25 years of his disease. This would NEVER happen to HIM.

But it did. And it is. Again, I don't think it has anything to do with how well you take care of yourself. It has more to do with how old you are, the natural aging process of the body, how long the disease has been in your system, what additional issues you just all adds up. And while nutrition, exercise and good glucose control may prolong it.....chances are it will still happen.

Today's battle will be this. The neurosurgeon claims he needs high levels of protien and no carbs in order to get his incisions to heal.
Endocrinology says he needs 45 carbs per meal for his diabetes.
Dialysis says he needs no protien.

I think I need to schedule a joint meeting with all 3 entities this week. That should be a fun one! :o)



Lynn Barry said...

OMG you sound so strong, so focused...what an inspiration you are to me...thank you for blogging and thank you for being such an amazing woman. WOW! YOU TRULY ROCK! LOVE AND HUGS GOOD LUCK...ONWARD AND UPWARD! XOXOXO

Lilly said...

You are right:
You definitely need to get all his doctors together. I know that when my husband was on dialysis, he could only have so much protein, phosphorous, salt, and potassium. It was a huge balancing act, as there were literally NO recipes I had at the time that he could actually eat, without me changing them in some way. If you have to, DEMAND that these professionals start communicating with each other! I know, this is NOT what you should have to do right now, but maybe your "adrenaline surge" will help you through this. I have to know what's going on with my hubby too, and they need to start telling you. Regardless of what they might think, it really does help. Hang in there . . .

Anonymous said...

"they" say that knowledge is power. In us, its not using that power over others, its using it as empowerment. you sound stronger because you have more knowledge at your disposal. terrific! I really hope that today is better. Every day that he can say "hold my hand" is better than one where he can't say it. hang in there, it sounds like a path to better may have opened up -- even if its only a little one. Tom's Wife