Stayin’ alive

A kidney dialysis/transplant diary

And again …

It’s snowing again, quite furiously, swirling in all directions like a snow globe shaken by a delighted child.  It’s Christmas eve. I guess we have to forgive Mother Nature and realize that all the good little children can relax in the knowledge that Santa’s sleigh will have an easier journey due to the new fallen snow.

Anyway, that’s what I’m telling myself.

We had a Christmas gathering here Friday evening. I invited the three knitting buddies who have been such a help to me while I was in hospital and when I got home.  Alecia, unfortunately, got the good old intestinal flu Friday morning and was unable to attend. 

A good time was had by all, to use a cliche, with lively piano music and a visit from Santa Claus thrown in for good measure. Linda and Mary were each dressed in festive red and seemed to enjoy themselves.  I’m glad. They’ve done so much for me I was glad to give them a tiny bit of holiday cheer.

Saturday my old friend and coworker, Mary, brought me holiday greetings from the Gazette newsroom and an envelope bulging with money, more than enough to bring Aaron home over the holidays if not Christmas day.

I was so touched I was speechless, not a state I often experience. It was the thought that touched me so deeply though the dollars will certainly ease the strain of some upcoming financial needs.

I miss the people in the newsroom and I wish them all the merriest of Christmases.

And you, gentle reader, I wish you the merriest of Christmases as well.

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December 24, 2008 Posted by | diabetes, dialysis, fistula, health, kidney, renal diet, renal recipes, transplant, weight loss | 3 Comments

Again?

Guess what. We’re deep in another winter storm here. Sleet, freezing rain, thunder sleet, thunder snow and snow last night. It’s supposed to end by noon today but more may be on the way Saturday.

Ugh.

It would be nice not to have to get out today, comma but … dialysis, you know.

I’ve been wrapped around a good book most of this week. An Affair of Honor by Richard Marius. It’s beautifully written and an intriguing story. See? I took my advice to get reading from the last post. The author threw in some surprises, too. Just when I thought I’d figured out the good/evil theme, he up and killed off the evil monster. I’ll be thinking about this one for awhile. Meanwhile, I’ve started another, a historical novel set in the court of Elizabeth I. Well-sourced historical fiction is one of my guilty reading pleasures.

Christmas is fast approaching. It’s kind of drab around our small apartment and I can’t help thinking about the boxes and boxes of  Christmas decorations we lost in the flood. Mom and I both bought a special ornament each year for my son. All those were lost, too. Nothing we lost was monetarily pricey, but the sentimental things lost leave a hollow feeling in my heart some times. A Christmas stocking I crocheted for Aaron the year he was born, it stretched to hold too much stuff and was a big part of Christmas for 30 years. The “Frosty Friends” Hallmark decorations that Aaron loved receiving even when he was 30 years old. The ceramic Christmas tree my cousin, Jeanie, made for us. Much, much more.

A friend brought us a poinsettia and another sent a cheery bouquet in a snowman vase, so the apartment isn’t totally devoid of holiday decoration. There’s also a Christmas tree in the community living room and Santas on the dining table so there is some festivity to be had, it just jogs memories of things lost to the sweeping devastation of the flood.

I’m hoping Aaron will be able to come from Des Moines for Christmas, but being tattoo artist by trade, this is a slow time of the year, the economy hurts, too, and he’s most concerned about making the rent. I’m going to call the bus station and see how much a round trip ticket would be. Maybe I can swing sending him the money or a ticket, if I can find a way to get it and send it.

It makes me smile to think of the litany of “woe is me” this sounds like. For several years the catalog for the Chicago Art museum featured a woodblock card of a run down farm. The gist of the message was “well, the corn crop failed and my hound dog died but Merry Christmas just the same.”

December 19, 2008 Posted by | kidney | Leave a comment

Some encouraging words

I made it to the vocational rehabilitation appointment yesterday despite icy roads, closed schools and county roads, and difficulty arranging for transportation. Of course, I called first to make sure the office was open and I could meet with the person I was supposed to. Things went smoothly. I was told there was no doubt that voc rehab could help and that there was a good chance I wouldn’t have to be placed on a waiting list.

I indicated on the application form that I’d like help entering an online (because dialysis takes such a chunk of time during the weekdays and transportation to evening classes would be almost impossible to arrange easily) course on medical transcription, help setting up an office area in our apartment, and help obtaining driver’s education and getting a vehicle equipped with handicap controls.

I was introduced to the man who will act as my counselor, a proud graduate of Mizzou with a plush tiger tail hanging on his office wall and an alumni mug holding his beverage. He said he expected to be sending me a letter within the next 2 weeks and if I haven’t received it by then to contact him.

Recent observations

I never realized how much elderly women enjoy college sports. A large number of the women here at the independent living center are just as enthusiastic about college sports as the handful of men who live here. The focus seems to be mainly on the Hawks and Clones with the women. They are avid fans of both football and basketball. And here I thought it was just my mom, who’s a vocal sideline coach for the Hawks.

It’s amazing, once you become dependent on others for transportation, how much time you spend waiting. It can sometimes be trying to even the most patient person. Oh yeah, and automobile drivers have little or no respect for the fact a bus is much bigger, heavier and harder to stop than their vehicle even if they’re driving a huge SUV.

Television — network prime time and cable — really sucks. Why do we pay so much to have so little choice? I gotta start reading more.

December 10, 2008 Posted by | diabetes, dialysis, fistula, health, kidney, renal diet, renal recipes, transplant, weight loss | Leave a comment

Thought provoking

I’ve run across some interesting information on dialysis the past couple of days. In some ways, these two bits are philosophically  opposed, but they certainly are fodder for conversation. The first link will take you to You Tube. I don’t normally watch Scrubs, but I may start.

Scrubs – On death and dying

The second chilling discussion is on Bill Peckham’s Dialysis from the sharp end of the needle.
Seems the US is considering limiting dialysis a la the British health service route. Take a look at the recent posts on NICE and life quality.
They leave me feeling chilled but I must admit though as a patient they are unacceptable they do make some cold-hearted logic.

What do you think?

December 7, 2008 Posted by | diabetes, dialysis, fistula, health, kidney, renal diet, renal recipes, transplant, weight loss | Leave a comment

Vocational rehabilitation orientation and a correction

I made it to the vocational rehabilitation orientation meeting in plenty of time Thursday. It was a short meeting and I had already filled my application out at home so I was done and had another appointment set up within 20 minutes. The second appointment will determine what my disability status is and whether or not I’ll have to go on a waiting list for help. They’ll also ask me to sign medical release papers so they can get documentation of my medical problems.

I asked if I could have that meeting that same day, but that was not possible. Now I have to find transportation to get me to the voc rehab office by 11 a.m. Tuesday. I called the LIFTS dispatcher Friday morning to see if I could arrange for them to transport me, but the dispatcher was not at the phone when I called. I had to leave a message and had to include that I was soon to be on my way to dialysis.  I didn’t hear back from her so I’ll have to wait until Monday to see if they can transport me.

LIFTS is a service provided by the county that transports disabled people to various appointments they might have and to work and back. The cost — compared to other transportation available — is very reasonable but it can be difficult to get the transportation arranged.

One good thing about the voc rehab possibility is that there are no income restrictions on who can receive help from the program. That’s a good thing for me since the long term disability I will receive from work pushes me over most income thresholds. 

The correction mentioned is the cost of the medicare supplement and drug plan I’ll be joining.  The monthly premium for the 2 plans together will be $172.

I expected to enroll Friday, but it was a comedy of errors and phone tag. I called the agent about 20 minutes before I thought the LIFTS bus would be here to take me to dialysis.  He was on another call so I waited on hold.  The bus was early so as soon as he came on the line, I had to tell him I had to leave. I told him to call me at dialysis about 11:15 because I was sure I’d be on treatment by then. Comma but, the driver got a call to pick up another passenger to take her to a doctor’s appointment. That got me to dialysis about 11:01, just past my put on time.

When I was finally on treatment, about 11:20 or so, a nurse brought me a cellphone and said the agent had called about 11:15. I called back but he was on the phone. His assistant  asked for the telephone number but I told her I didn’t know the cellphone number and asked her to tell him to call the dialysis unit back. He did, 2 minutes before my treatment ended. He offered to call me at home and I said fine, but could he wait until 5 p.m. because I was sure I’d be home by then.

I wasn’t. The LIFTS bus was late and we had a third passenger who lives outside the city. She was taken home first so it added about a half hour to the drive home. I came in the apartment door about 5:05. Mom said the insurance agent had called.  I knew he was going to be calling from home and since I had neither his home phone or cellphone number, I figured I’d have to wait for him to call back. He hasn’t or if he did it was while we were in the dining room for supper.

Isn’t that the way things happen? When you’re counting on things to be normal, they aren’t. C’est la vie.

December 6, 2008 Posted by | diabetes, dialysis, fistula, health, kidney, renal diet, renal recipes, transplant, weight loss | 1 Comment

Headaches

I spent a great part of Sunday on the internet tracking down information on Medicare, Medicare supplement insurance and Medicare drug plan insurance. It’s a great way to give yourself a headache. I quit late afternoon when an insurance site I was looking at served a popup box saying if I was under the age of 64 (the online form had asked for my birthday), I needed to call an 800 number to get more information on what the monthly premium would be.

Of course, the 800 number wasn’t manned on Sundays. I called Monday and the representative I talked with said the premium for December for a plan c policy would be $419. That, I’m sure, was because I had to answer some health questions which included whether or not I am on dialysis. The representative told me that he could greatly reduce the premium the first of the year because of open enrollment (Nov. 15 to Dec.31). You don’t have to answer any health questions during open enrollment.

The cost would be $172 a month. The supplemental does not include a prescription plan. That will be another $30 a month plus the cost of prescriptions. Then, of course, the “doughnut hole” goes along with the prescription plans. As I understand it, I will fall in the doughnut hole when my out-of-pocket and the insurance company’s costs for drugs reaches $2950. After that I am obligated to pay 100% until the costs total $4350 then the catastrophic rates apply ($2.40 per generic or 5% of the cost, whichever is greater).

One of the kickers is that you’re still expected to pay the premiums when the insurance kicks out. Why do I suspicion that the doughnut hole legislation was proposed by a Republican Congress?

What I have to try to remember is that there is Medicare to help with the enormous costs of dialysis. Kind of like I have to remind myself that even though dialysis is a bitch and screws with my life, at least I have a life because of dialysis.

December 3, 2008 Posted by | diabetes, dialysis, fistula, health, kidney, renal diet, renal recipes, transplant, weight loss | 4 Comments