Stayin’ alive

A kidney dialysis/transplant diary

Snowy show

The good morning greeting outside our apartment today was the sound of a snow plow clearing the parking lot. It’s the first real snow of the winter and though it’s beautiful, it brings back memories of last year’s icy, snow-filled winter. They are not memories that thrill me.

Several of the residents who were headed to family gatherings for Thanksgiving have changed plans for the day. The roads, I understand, had a thin layer of ice under the snow. It’s still snowing at mid-morning. The winter advisory issued will continue through midnight.

I’m glad I have no plans to venture out today.

I haven’t been wearing my prosthesis the past week. I’ve been waiting for a couple of blistered places to heal up before I introduce them to the confined area again. They were caused, the prothetist said, when the silicone liner sock wrinkled at the bottom and pinched the skin. He added some lamb’s wool to the bottom of the stump cup and said the contact with the wool will keep more blisters from forming. I don’t exactly understand the science behind that but if it works, I’m happy to comply.

I did wear the prosthesis a couple of times earlier in the week but after an hour and a half, including a couple 100-foot walks, the blisters were weeping again so I decided to give them a rest until scabbing formed. I certainly don’t want to promote infection.

I’m going to be looking online today at several Medicare prescription plan policies in the hopes of deciding on the best plan for me. I’ve made an appointment with the social worker at dialysis to discuss the plans and the coverage gap Monday. The gap thing, if I understand it correctly, scares me because I take a number of medications including two brand name insulins. 

I need to check out Medicare supplemental insurance, too, and will undoubtedly have to purchase it. Otherwise, according to the social worker, I will be responsible for 20% of the cost of dialysis. I certainly can’t afford that.

The “new normal” of my life can be overwhelming in both the minor and major areas. Meanwhile, I’ll try to appreciate the beauty of the snow … from the windows.

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November 30, 2008 Posted by | diabetes, dialysis, fistula, health, kidney, renal diet, renal recipes, transplant, weight loss | Leave a comment

Thanksgiving

The smell of sage and sausage cooking brought a clutch of staff and residents to the community kitchen while Virginia and I made the homemade dressing for the Thanksgiving dinner. There were over 30 here for the meal. Mom and I were at a 4-top table joined by Barbara and her grandson.

I got many compliments, including a couple of the cooks, and no complaints on the dressing so I consider it a success. I had a second helping myself.

There was lots of chatter and the sounds of happy youngsters to brighten the meal, too, and knowing we didn’t have to do dishes was a special treat.

Mom and I watched the Macy’s parade in the morning. That sure has changed over the years with all the performances by singers and dancers. My favorite, because it made me laugh, was the boom-shacka-lacka businessmen’s drill team.

No football for us, though. We watched a movie or two and munched on the box lunch brought to our door for supper.

The thankful list:

Life

Good, helpful friends

Family

Those three cover just about everything don’t they?

Hope your Thanksgiving was good, too.

November 28, 2008 Posted by | diabetes, dialysis, fistula, health, kidney, renal diet, renal recipes, transplant, weight loss | Leave a comment

Sunday treatment

It’s Sunday but because it’s a holiday week, it’s also a dialysis day: Same bat time, same bat station.

Thanksgiving pushes normal Thursday treatments to Wednesday; Wednesday treatments to Tuesday; Tuesday to Monday; and finally Monday treatments to Sunday. It took some special arrangements to get transportation set up for today. Now we just hope that Melissa remembers she agreed to come in to work today to take me to and pick me up from dialysis.

My knitting buddy, Mary, came by again Saturday afternoon and hung some decorative plates that miraculously made it through the June flood in the living room. It’s amazing how much more homey it feels to have curtain toppers up and plates on the wall.

She also unpacked the laptop and measured the area where a desk or table could fit so I can use the computer in the room. It’s not connected to a modem, though, so I’m at one of the two computer stations in the “internet cafe” here. I’ll have to check tomorrow to see if this building is actually a wi-fi area. They said it was when we moved in but I wonder if they were confusing wi-fi with internet.  It would be great — and cost me less — if the area is wi-fi.

Right now, the laptop is on a TV tray and I’m trying to set things up. That’s a bit difficult since so many of the programs require a trip to an internet site.

Alecia stopped by as well and made a trip to the grocery store for us. I’ve got everything in house now to make a big batch of homemade sausage bread dressing for the residents and guests who will be here Thanksgiving. Another resident, Virginia, is going to help make the dressing so we should manage to have a little fun doing it, too.

I doubt my recipe is super renal friendly, but it’s good and I need something familiar on the table this year. Plus I think the other residents will like something homemade as well. At last count, there will be about 35 people here.

If you’re looking for renal-friendly Thanksgiving recipes, check here.

November 23, 2008 Posted by | kidney | 1 Comment

5 minutes late

Things often run afoul when you’re trying to meet a specific deadline and so they did Tuesday as I tried to make the 1:30 vocational rehabilitation orientation meeting.

Lunch is generally served around 12:30 here (Brookview Senior Living) but Tuesday there was a glitch and I finally asked at 12:45 if they could please serve me since I was trying to be ready to take the bus at 1 p.m. so we would be at the meeting by 1:30.

I wolfed down my food and went back to the apartment for my winter coat. It was just 1 p.m. when I got to the front desk where the bus driver was waiting for me.

We had some trouble loading on the bus (I have a wide wheelchair at the moment). The lift was being contrary and didn’t want to allow the wheelchair to get past the bolts on the entry to the door. That took some extra time. Melissa, the driver, explained some of the controls to the new driver. That took a couple of extra minutes.

Traffic wasn’t too bad so I was pretty sure we’d make it to the meeting nearly on time. My mom raised me pretty much to believe that if you’re on time, you’re late. We got to the Executive Plaza building where voc rehab is headquartered. The lift on the bus, once again, was uncooperative so it took a couple more minutes to work the wheelchair off the bus.

Then the door to the building (not very handicapped friendly) didn’t have a good bridge over the bottom of the door jam and a wheelchair wheel got stuck. The elevator doors closed too quickly, too, and weren’t very wide.

We got down to the basement where the meeting was to be held and asked where we needed to go. An assistant there said we couldn’t go in the meeting because it had already started and the presenter had already allowed several other stragglers into the meeting. “She doesn’t like to repeat herself,” she said.

“Just how late are we,” I asked. 

“Well, it’s 25 ’til,” the assistant replied. “I always tell people to get here a little before 1:30,” she said. No one mentioned that to me when I called to ask about the procedure. So it’s wait another couple of weeks and get to the meeting early on December 4.

On the thank you so much side of life, Mary, one of my knitting group who’s a security specialist and an organization freak at heart, came over Tuesday morning with her tool kit, a step stool, steam iron and furniture moving equipment and started to help us settle the apartment.

She hung the window toppers in the living room and bedroom, we hauled about 50 books up to the third floor reading room and she rearranged the living room furniture so it feels like there’s a bit more room. Alecia showed up, too, and helped with the furniture rearranging. Mary says she’s coming back Saturday afternoon to take care of a few more things on “the list.” 

The women in my knitting group have been so supportive during this time of …. well, I guess trial is a fair word to use. I can’t thank them enough for their support and help.

Knitters will be here again tonight for a couple hours of clicking needles and clucking tongues. I’m looking forward to the evening.

Next week is Thanksgiving. There will be a total of about 35 residents and guests here for the meal. I decided I want to make a big batch of bread and sausage dressing so we’ll have something truly homemade for the meal. It’s as much for me as anyone else. Dressing makes a Thanksgiving meal for me and I like my own dressing. I’m not even humble about it, so it’s take things in my own hands, so to speak.

November 20, 2008 Posted by | diabetes, dialysis, fistula, health, kidney, renal diet, renal recipes, transplant, weight loss | Leave a comment

Picking up the pieces

I’m less depressed than I was last week. That may be partly due to restarting the Celexa (at half dose for the first two weeks) and partly due to some social activities (a couple of visitors Tuesday afternoon, a pair of knitting buddies who stopped by Thursday evening to knit with me, and the cake and ice cream celebration for Mom’s 90th birthday Friday evening).

I called Vocational Rehabilitation this past week and learned they have an orientation meeting at 1:30 p.m. Tuesday. I’ve arranged for transportation to get me there and back. I should receive an application form at the meeting. We’ll see where it goes from there. I’m hoping they can help finance some training (medical transcription) and maybe help me get an office area set up in the apartment.

The apartment is pretty cramped for space at the moment, but I think we can squeeze in a desk for the computer.

I’m going to call my former supervisor at The Gazette and see if I can set up an appointment with him to discuss the particulars of the contract work they’ve offered me. Even if that would work out to be a great offer, I think I’ll still pursue the medical transcription route. It never hurts to have a back-up plan, especially in these economically strapped days.

I received the info and requests of proof (birth certificate, marriage license and divorce papers) from the Railroad Retirement Board. I’ll have to contact various counties and a couple of states to get certified copies. Those kinds of papers were lost in the flood.

I’ve been increasing the daily walks with the prosthesis. Sherri, the prosthetics specialist who’s been working with me, is quite pleased and thinks outpatient physical therapy might not be necessary especially if I ask the VNA physical therapist to bring along a cane to give that a try.

Jim, the prosthetics specialist who fit me for this prosthesis, will see me Thursday. Sherri says he’s going to be “impressed” by the progress I’ve made.

I need to build up my stamina in both my legs and arms before I’m going to feel really comfortable starting back to work and getting out more in general.

It felt good to have knitting needles back in my hands this week. Mary sent an email out to the group on Wednesday inviting them to come here to knit Thursday. That’s a bit short notice for most of the group so only Mary and Devry came to knit this week. We’re doing it again next Thursday and hope more of the members are able to come.

They’re a great group of women who’ve offered me tremendous support during this time. I so appreciate it that it’s hard to discuss without tears coming to my eyes.

Things seem less dismal this week and since perception is reality, that’s a good thing.

November 15, 2008 Posted by | diabetes, dialysis, fistula, health, kidney, renal diet, renal recipes, transplant, weight loss | 3 Comments

Coping

Bill came from the hospital yesterday. They billed the insurance company over $237,000 and said my portion would be close to $26,000.

Yeah, right.

I’m concerned with how I’m going to cover my basic living expenses each month. Don’t have any idea where the dollars to pay this bill would or could materialize because that’s what it will take, some kind of magic, to pay.

Of course that doesn’t include any physician, pathologist, anesthesiologist fees. Just the hospital stay. Bankruptcy may be in the near future. I think I need to talk with a legal aid lawyer.

I told the physical therapy assistant who’s been helping me from the Visiting Nurses that I probably would take more joy in my progress — which is good — if I didn’t have these financial woes hanging over my head. At this point, I don’t think they’ll ever go away.

I asked the doctor to put me back on an antidepressant. Somehow it seems it was discontinued during the hospital stay. I think the year is catching up with me and the future dim enough that I need some kind of boost. The nurse practitioner I talked to agreed and prescribed the generic of Celexa. It might help me sleep better than the sleeping pills, too.

I’m going to try to be ready to try part time work by the first of December and see what I can arrange for transportation. 

I also need to get the social workers at the dialysis center to give me some information on vocational rehabilitation and guidance on where I can get the info and/or apply.

On the brighter side:

I’m walking on my own for short walks in the hallway and in the apartment. I’m up to about 100 feet which gets me to the dining room. Mom follows with the wheelchair behind me. I sit in the wheelchair during the meal and when it’s over, Mom uses the walker and I wheel for the return trip.

I’m also donning the prosthetic to make bathroom trips which saves Mom having to drag the commode to a better transfer spot than the bathroom stool. That means life is getting easier for her which is one of my goals. She shouldn’t have to work so hard at 90 years old.

I hardly recognize my life these days and that’s difficult to cope with, but I’m trying. Right now, it seems it takes an inordinate amount of effort and concentration just to get the daily necessities in hand. Thinking of adding even part time work seems insurmountable, but I need to do that as much for my mental and emotional health as I do for meeting my monthly living obligations.

I have applied for Social Security disability, early retirement and Medicare. I’ve called about Medicare Part D but have received no callback yet so I need to contact them again next week. I’ve contacted the Railroad Retirement Board (the dead ex worked for the railroad before he died and I do qualify for a small sum – less than $100 a month – it appears since I was married to him for more than 20 years) and am in the process of filling out forms and gathering information for those applications.

I need to find some fun.

I know there are other kidney patients out there facing similar worries. How do you cope with the stress and how does the stress factor in to your general well being?

November 8, 2008 Posted by | diabetes, dialysis, fistula, health, kidney, renal diet, renal recipes, transplant, weight loss | | 5 Comments

Ouch

I got a call early Thursday morning before breakfast, before my phone interview with Social Security, before the therapists arrived. The call left me internally disoriented and at a loss.

Thursday, in fact, was pretty much of a bummer day except for the therapy sessions which went well.

The phone call was from The Gazette. They called to tell me that as of November 1 (today) they would no longer extend my leave. I am no longer on The Gazette payroll. Why is that such a blow to me? I don’t know, but it is. It’s more than just the financial terror – and that’s what it’s becoming, a terror to think how I’ll manage to exist when this is all settled, somehow it seems to be a death blow to the future. 

Is there a future? I guess so, but it seems pretty bleak. It was never going to be filled with sunny retirement days of just goofing off, but I’m now wondering how I’ll be able make it from month to month. There will be – when I’m ready physically to go back – the opportunity to do some contract work in the online field for The Gazette. I’ll need to be able to do that at the very least.

This wasn’t unexpected, I guess. Newspapering is a business and even for the best of employees, a position can’t be left unfilled forever. I am shocked at how deeply it’s cut at my core, though, and I’m not sure how long it will take me to rebound.

My telephone appointment with Social Security wasn’t joyful either. My best bet, according to the worker I talked with, is to claim early retirement (I turn 62 in December). Unfortunately early retirement means a pared down benefit. My retirement benefit will be only $1,400 a month (See why I’ll need something besides Social Security?). 

Medicare premiums ($96 a month) come off the top and I’ll have to get some kind of prescription plan at the very least since the diabetes, renal and heart conditions mean I take a lot of meds, several with no generics available.

I can, the Social Security worker said, earn up to $14,000 a year before they start chipping away at that benefit $1 for every $2 earned.

The long term disability insurance from work will help for awhile yet. And if I continue to qualify as disabled, and I see no change in that status, it should continue until I’m 65. I was told that claiming retirement instead of disability (by the way, the SS disability allotment for me would be $1332 per month and there would be more restrictions on earnings) would not change my long term disability.

These worries have been gnawing at me for the past several days and will, I’m sure, continue to turn my guts inside out. I’m trying to think in terms of month to month or day to day, but it’s difficult.

The good is how well my therapy is going. I’m ahead of the goals the physical therapist and I had set and I need to keep pushing to get stronger and be more independent. 

I need to solve some transportation problems and then soon should be able to begin the contract work for The Gazette. I also need to begin developing some other ways to earn money, perhaps from home.

Any ideas?

November 1, 2008 Posted by | diabetes, dialysis, fistula, health, kidney, renal diet, renal recipes, transplant, weight loss | 2 Comments