Monday, February 20, 2012

Some Incredible News

January 12, 2012. One of a few days that changed my life. The phone range at about 9 a.m.

-Kathy? This is Dr. W. (my kidney doctor).
---(Oh sh-t. What’s gone wrong now?)
-I’m calling because your labs have been trending toward normal over the
last few months. I’ve consulted with other members of my department,
and we tentatively feel that you can stop dialysis. We won’t know how it
will go unless we try.
---So, you mean, cut down on the time of each session?
-No, I mean stop going altogether. Don’t go tomorrow. Make an appointment for labs and office visit in a week.
---Well, this is awfully sudden, and I’m beginning to feel really anxious.
-Hey, listen, I’ve never been able to give news like this to someone. I have told the clinic to save your chair in case you need to go back, but I don’t think so. Have a good day.

Say what? My head started to spin. Why, I’d spent so much energy trying to adapt to dialysis and the pain and restrictions, and now, once again, life has given me a whole new set of circumstances to deal with. (Please, guys, I can tell that some of you are thinking “wow, what great news - why can’t she be happy?)

I walked around the rest of the day in a zombie-like state, thinking a) what will I do for insurance if I no longer qualify for SS disability? b) what am I going to do with all the extra time on my hands; c) every time my life calms down, something has to come along and rattle the cage; d) I didn’t get to say goodbye to my friends on the unit - since patient info is confidential, the staff will not tell anyone what happened and most people with think I’m dead;
e)if I can truly accept this gift, then I will constantly be tortured by the chance the the kidneys can again fail - maybe tomorrow, maybe next month, maybe next year. I was so confused I wanted to stand under the freeway overpass and scream. Emotions have run high the past 14 months and I’d crammed a lot of stuff away.

Thankfully, my therapist had an opening the next day, and, after talking with him I felt much calmer.

Went I went in for my doctor’s appointment the next week, things looked good. He said it is not uncommon for people to undergo acute kidney failure after a trauma to the body, such as surgery, accident, or illness. In my case it was the cancer surgery, the cardiac arrest, and the multiple organ shutdown syndrome. However, then the kidneys recover within 7-10 days. This is different than chronic kidney failure, which pwd’s are vulnerable to, and comes on gradually over a period of years.

So, instead of 7-10 weeks, mine came back after 14 months. The head of the nephrology department said he’d only seen a couple of other cases like mine in his 35 years of practice. They don’t know what caused the recovery. And yes, he did use the word “miracle”.

At this point, Dr W said that the main focus for me needs to be “heart health”, which includes the blood vessels. I need to continue to be as active as possible; monitor my bp every day at home (which I’ve been doing for the last 7 years anyway); do not take any new prescription or OTC meds without checking with him (did you know nsaids, such as Advil, can be damaging even to healthy kidneys?); take prescription calcium and Vitamin D supplements; weigh myself everyday to be alert for unusual fluid gains; if, possible, drop some fat - 10 pounds would be great, but even 5 is significant. I also take a diuretic to increase urine output. I can do all of these things. No biggie.

I told a couple of people on the OC early on, but I didn’t want to jinx it by making the news widespread until a month had passed. I had my 4 week appointment today and everything looks great. I told Dr. W. “I think I need to give you a hug.” And he replied, with a big smile on his face, “yes, it’s certainly called for”.

Tonight I’m going to put my “dialysis bag” way in the back of my closet. It contains a blanket, head pillow, arm pillow, eye mask, emergency cabfare, reading material, extra treatments for hypos and my long sparkly black elbow-length glove. People get extremely cold when they dialyze and need to be covered up. But the arm with the access has to be completely exposed so the staff can be sure you don’t fall asleep and roll on it or smush it into the chair. I was thrilled to find the long gloves. They helped a lot.

So now I am left with the unanswerable questions of “why me?” and “why not me?” But I think there is an answer - to embrace the ever present richness of life. And then say “thank you”.


Anonymous said...

Best news I have heard maybe in my life. Beyond happy for you. You are an amazing woman.

Colleen said...

I'm thrilled for you! You deserve a miracle!!

Rachel said...

Oh. my. goodness. :) :) :)

Jonah said...

That is amazing news! I'm really happy to read it.

What are the answers to the questions you asked after you got off the phone with the doctor?
Do you still qualify for social security?
What are you doing with the extra time?
Did you go back to the unit or somehow let people know you're not dead?
Are you feeling more confident about staying off of dialysis right now?

Zazzy said...

OMG! That's the best news I've heard in ages! That's incredible!!!

I am so damn happy for you!

Giant Hugs!

Zazzy said...

Oh, and I'm sorry. I didn't mean to ignore the rest, I just got so excited. I can understand the fear and - I'm not even sure what to call it. Adjusting to something you didn't expect to happen? And maybe fearing that it won't last? Celebrate when you can my dear Sis.

Pearlsa said...

OMG OMG the news just made my month. Kathy I am so happy, no beyond happy.

Your positivity and joy in the face of all that was going on has been rewarded

Stay blessed

Kerri. said...

This is incredible news, Kathy. I am so glad you are able to put that bag in the back of your closet. :)

Anonymous said...

Kathy, I am so happy for you! You are the second person I have known to have a true miracle in their life (my aunt was the first one). If anyone deserves this, you do. Besides all the stuff you were worried about when they first told you, I would have worried about those plus convinced myself that there was a mix-up at the lab and I would end up in the hospital if I missed dialysis!

I hope that everything goes smoothly for you!

Kelly Booth said...

Congratulations Kathy! If anyone deserved this, you do. You are the second person I have known to get a true miracle in their life (my aunt was the first). Besides all the stuff that you were worried about when you first heard, I would have convinced myself that there was a mix-up at the lab and if I skipped dialysis, I would have ended up in the hospital.

I hope everything goes smoothly for you from here on out – stay away from dialysis and cars backing up!

Scott S said...

Wow, Kathy, this is incredible news. I would respond in much the same way you did: first with disbelief, followed by worry about insurance and the rest. I'm glad your therapist was able to help calm your nerves a bit! In any event, I am so glad to hear this news ... congratulations are definitely in order!

Molly said...

Kathy - YAHOO!!!! What great news!

I imagine that not doing dialysis is like what I think life would be like without Type 1. It would be a different life. (I imagine it would mean a LOT of free time for me.) You were in a rhythm. Now that rhythm has changed. Exciting in a big way, but unsettling in another.

Focus on the excitement as you navigate through the unanswered questions.

Celebrate. You have accomplished something huge. You did it. :-)

((Hugs)) from Dixie and me.

Minnesota.Ann said...

Some times good things DO happen to good people and I cannot think of a more deserving person !!


Jane K said...

Wonderful news for a wonderful person. Best to you, Kathy!

Lili said...

What great news! Hope the insurance thing works out.

Karen said...

Oh Kathy, I COULD NOT be happier to hear this great news!!!! I understand how it will take some time to adjust - but what a wonderful thing to adjust to!