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”.