Stayin’ alive

A kidney dialysis/transplant diary

Hell and high water

That’s the remainders of our lives, piled into one corner of the apartment.

Precious to begin with, they’ve taken on an aura of reverence for me.

My friend Mary and her two adult sons, Jim and Andy, went into the apartment Sunday morning to see if they could find anything salvageable. Neither I nor my mom was physically able to go into the house, so it was a blessing when Mary offered to help.

What did they find? Most of the collector plates on the walls were saved (we’ll use them in decorating the new apartment); my Grandmother’s black iron Dutch oven (we may not cook in it again though there is a community kitchen here so who knows); some silverware that included a few pieces from my grandmother; a few pieces of pressed glass; a 5-gallon whiskey jug; my grandmother Weygant’s portrait; a few other family photos; and my grandmother and grandfather Danielson’s marriage certificate.

When Mary brought in the marriage certificate, I started to cry.  It’s always been special to me but when I saw it had survived the murky waters I realized just how much it meant. Sitting here writing about it, I’m tearing up again.

I am grateful beyond words to Mary and her sons for retrieving those things for us. We now have several thousand times more precious family items then we did a few days ago.  With those sprinkled around the new apartment, it truly will feel more like home.

The bathroom … or perhaps I should say the dregs of what used to be the bathroom.

The garage … it gives some idea how high the water was and how dirty.

Mary said the landlord, Doug, had done a great job in getting the big pieces out of the apartment and to the curb. He’d also taken the things from the walls that he thought could be saved. I thank him for that heavy lifting work, too, because I was worried about how we would manage to get it done.

We’re slowly putting our lives back together and arranging for furniture, etc. All this shopping stuff would be more fun if it was by choice.

My foot? Well, Friday morning they placed a stent in my right thigh and did a balloon angioplasty in the right calf. I was sedated, but awake during the procedure and when the vessels were expanded, it hurt like hell. It did bring some relief, though, and the pain of circulation returning, though acute, seems less so than the pain of the flesh dying from the lack of circulation.  I may lose some toes, but for the moment, we’re waiting to see what happens.

 

June 30, 2008 Posted by | diabetes, dialysis, fistula, health, kidney, renal diet, renal recipes, transplant, weight loss | 1 Comment

It’s Sunday. Move day plus one.

It’s Sunday. I’m at work. Luckily things are very quiet. It’s difficult for me to concentrate because my mind keeps wandering down lists of things I should add to lists of things I need to do.

Then there’s my right foot that hurts like hell and has for two weeks plus now.  I went to the vascular surgeon on the 18th. He looked at the foot, told me I had no pulse and said he wanted to schedule a couple of tests. July 3.

Wait. What? I have no pulse in my foot? Can we arfford to wait until July 3 for the tests?

Well, he said, there are no open ulcers on the foot or leg and no “gross” smells (which I interpreted to mean no gangrene – yet) so he thought we can safely wait until July 3.

And the pain, I asked. Is there something stronger than the hydrocodone for the pain? He said he’d rather not try anything until after the tests. “So I should just crawl into a corner and whimper,” I asked looking him straight in the eye and probably not telegraphing the most friendly of feelings.  He just smiled a bit and left the room.

So, here I am, once again wincing in pain every few seconds, jerking almost uncontrollably when they hit, and wondering when or if this kind of stuff is finally going to ease up on me. My toes feel so numb they feel frozen with the sharp burning sensation that accompanies frost bite, I think. Changing positions seems to help little and about the only way I’m sleeping at all is to time the pain pills so I can take 2 right before bed and 2 sleeping pills. Once the pain subsides a little, I can fall asleep and at least, though I wake 3 or 4 times a night, I’ve been able to fall back asleep.

At Friday’s dialysis session, I asked Jane to take a look at my foot and told her the tests weren’t scheduled until July 3. She thought that was too long in the future, too, and asked Jodi, Dr. V’s nurse practitioner, to check, too.  She felt the toes were more blue than when she looked at them last week.  With the push of the dialysis nurses and Jodi, we got the tests set for Wednesday rather than a week from Wednesday.

If it starts looking worse, though, I’m headed to the emergency room, though it could prove an extensive wait since there is only one ER operating in town at this time.

Probability of stents or graphs is on the horizon. I hope the toes will not need amputation (please, please not).

Meanwhile, I believe we should be set to move into our new apartment tomorrow.  We have little to move — 3 changes of clothes each, our medicines, a bag full of toiletries — which is just as well since my foot is being so uncooperative.

The move will be to a senior independent living center.  We needed a fully handicap accessible bathroom, so I first contacted the Area Agency on the Aging for a list of rentals prescreened for handicap accessibility. Believe it or not, this was the first number I called.

It’s a brand new building, 45 units dedicated to independent living but offers meals (cooked by chefs); for the 2 of us, up to 4 loads of laundry a week; all utilities including cable except for telephone; light housekeeping; small refrigerator and microwave; totally handicapped accessible bathroom with a step in shower with bench; a 24-hour internet coffee shop; a dance floor in the community dining room; happy hour daily; a spa tub available; private dining room available; a community kitchen so you can cook up a pot of chicken and noodles if you so choose; a rooftop garden; a small gym; an on-site beauty shop; a 24-hour attendant; and more that I’m probably forgetting.

I think the move will be permanent. It certainly would relieve a lot of daily stress from me.

Julie, the woman I’ve been talking  to at the center, has turned into something of an angel for us: finding hospital and regular beds, recliners, bedding, etc., to loan us until we can replace our lost items. We do need to find a lift recliner for mom, but it looks like we will have the bare necessitites when we move in.

The Gazette has been generous, too, not the least of which is allowing those employees who have been displaced up to 2 weeks of time with pay to take care of the details of cleaning or moving. Bless them.

And in a phenomenal pay-it-forward kind of gesture, newspapers across the country are coming to our aid including the Dubuque Telegraph-Herald (there was an American Express gift card in my name at my desk Friday) and the New Orleans Times-Picayune who will be sending us a care package Monday.

Another small but greatly appreciated gesture: I stopped at a restaurant last week because I love their cheddar and ale soup and felt in need of that comfort food.  The waiter asked how my day was going. “It could be better,” I said, “we were evacuated from the Time Check neighborhood.”

He extended his condolences. I gave him my lunch order and told him I’d be ordering something to go, too, to take back to the hotel for Mom.  When the check came, I tried to hand him my debit card but he motioned me away, “No,” he said, “It’s been taken care of.”

I think at some point I’m going to have to have myself a good cry, both to grieve the loss and to commemorate the extraordinary generosity we’re receiving.

 

June 22, 2008 Posted by | diabetes, dialysis, fistula, health, kidney, renal diet, renal recipes, transplant, weight loss | Leave a comment

That was then. This is now.

It’s gone. All of it.

I met the FEMA inspector at the house late this morning. He insisted I had to be there even if I didn’t go in the house.  I borrowed a super heavy-duty charcoal filtered face mask from work (they had a box full for reporters and photogs going in to the houses).

I didn’t go in the apartment. Actually, neither did the inspector.

 Just driving to the block through the Time Check neighborhood made me nearly sick to my stomach and left me a littled dazed and, I think, shell shocked.

People — wearing surgical masks and boots – scuttle from the doors of their homes to the curbs carrying water soaked couches, tables, beds, mattresses, toys – their lives – to the curb where the sodden grotesque mounds grow higher and higher.

 Out-of-town law enforcement vehicles troll through the jammed streets and there’s a scummy gray pall over everything.  Stoplights are not working and drivers — like me — are slow to respond, seeming to be in shock.

I could clearly distinguish a waterline at the bottom of the porch roof, about 2 clapboards above the window. The white garage at the back of the property is mud gray.

Brooke, the young woman who lived in the upstairs apartment, said she cried when she looked in our front door.  She was busy salvaging belongings from her apartment. She will be moving permanently, she said, because she doesn’t want to trust that mold won’t form in the house and she has a beautiful young son to think about.

Doug, the landlord, called and did check on a few very sentimental items for us: He saved some of Mom’s jewelry, sentimental to her because my dad made it; a litte green glass toothpick holder she’s had for 86 of her nearly 90 years; my two piggy banks (“You’re going to need all the money you can get your hands on,” he said.); and he was keeping his eye out for the black iron dutch oven my grandmother used her entire life and contributed to my Mom’s kitchen when she broke up housekeeping.

The FEMA boost money should be coming quickly, the inspector said.

Gotta run for now. Dialysis treatment looms and I’m already going to be late.

June 20, 2008 Posted by | kidney | Leave a comment

A quick listen

Updating on the fly here. I’ve got a doc appointment with a vasular surgeon in a little under an hour. The good news is I think I’ve found a place for Mom and me that’s totally handicapped accessible.

A radio reporter asked to interview me yesterday, you can hear the interview here.

I’ll be back soon to update you further.

If you want a full report of what’s happening here in Cedar Rapids, check out GazetteOnline.com

June 18, 2008 Posted by | kidney | Leave a comment

Replying to a friend’s e-mail

Hi, Linda

We evacuated Tuesday evening and are now staying at the Heartland Inn.  I’ll talk with Mom about your offer because I think we will be displaced for some time to come and it would save us money if we didn’t have to stage our search for new housing from a motel. The room, too, is quite cramped and I’m concerned about Mom being there by herself during the days although why that’s different than her being at home normally, I’m not sure.

 

Just saw some aerial video of the area and pretty sure I identified out house.  It looks like the water probably came up at least 3 to 4 feet on the first floor level.  I think we’ve lost just about everything but we won’t know for certain until we can get into the house. Ironically, one of the two friends from work who helped us get out of there Tuesday said she was going to take my community knitting to work for me because I had too many hours in it to chance leaving it on the davenport to possibly get flood soaked. Looks like that’s probably the only thing we saved.

 

I’ve already been worried about where we’ll ever find housing since we have some special needs to accommodate, but trying not to be totally overwhelmed. So far, both of us have done pretty well at not wailing and gnashing our teeth. The main thing is we’re both out safely. The other stuff, though I’m certain we lost some family treasures as well, is just stuff, precious as it was.

 

It’s difficult traffic-wise getting across town for dialysis and once there, they are running on a disaster schedule which means the treatments are limited to 3 hours. I am concerned over two appointments I have next week, though. One Tuesday at Mercy hospital to have my chest catheter removed (I think that one is definitely out of the realm of possibility) and one Thursday with a vascular specialist that I hope I can keep because my right toes are getting more dusky and painful.  Need to get some help quickly with that.

 

Mom needs a handicapped bathroom, which we finally have here at the Heartland, and it would be nice if the recliner they have here was a lift chair.  She’s very, very sore and getting “stove up” from lifting herself from the chair.  I’m worried about what she’ll do during the daytime when I’m not here to help her up.

 

I’m also concerned if they close the restaurants.  There is no restaurant with this motel, but they do provided a pretty good breakfast.

 

I’m going to stop now basically because it’s about all I want to deal with at the moment. Little bites, little chunks.

 

That which does not kill us only makes us stronger, and right now I feel pretty much like an unwilling Hercules.

 

I will try to get to Mr. Beans Thursday. I KNOW I’ll need the break.

 

Thanks for the offer, thanks for the thoughts and keep us hugged in your good wishes, please.

 

Kathy

 

June 14, 2008 Posted by | kidney | Leave a comment

Stayin’ alive in other ways

My mom and I had to evacuate our apartment Tuesday due to impending floods in Cedar Rapids.  I’ll fill you in more later, but for now will post the story I filed a few minutes ago with GazetteOnline.

By Kathy Alter

GazeteOnline

CEDAR RAPIDS — Sometimes you become part of the story. This is one of those times.

My mother and I evacuated our first-floor apartment in the 1300 block of 5th Street NW Tuesday evening. Since both of us have physical handicaps, we rented a room at the Heartland Inn in Southwest Cedar Rapids.

 

We weren’t a novelty here for long as other flood displaced Cedar Rapids residents started drifting into the motel. As I sit here Saturday morning, using the motel’s lobby computer, nearly every one of the motel’s 113 rooms is occupied by one — usually more than one — flood victim.

 Some are still wandering teary-eyed and shell-shocked, unable to comprehend what’s happened to their homes and their lives. The mood isn’t exactly somber, but it is subdued. Clusters of people sit under the lobby canopy, gathering for the comfort of other humans in the same boat and to grab a cigarette since the motel is smoke free.

 Angie Douglas, whose address was 385 16th Ave. SW, said her mother’s home was a block outside the 500 year flood boundary but they were evacuated Thursday when water started climbing into the basement.

 She was in the breakfast room at the motel this morning checking the Gazette want ads “for someplace cheaper. We can’t afford this much longer.”

 She feels, she said, at a loss as to where to go from here. “I don’t even know who to talk to” to find out how extensive the damage is to her home, but she expects it will be overwhelming. In jeopardy in the basement were “the furnace, water heater, washer and dryer, freezer and all my belongings because that’s where my room was,” Douglas said.

The family of four has two dogs and six cats. All have been temporarily housed with other family members and friends, Douglas said.

 What is she hoping survived the flood? “Pictures of my kids when they were young.”

 Her mother has owned the house for 27 years, but plans to rehabilitate it will wait until a damage assessment can be made. She’s trying not to worry too extensively at this point. “At least, like my mom says, we’re all safe and the animals are safe.”

 The Heartland Inn is, of course, much busier than usual. They will curb services such as laundry beginning tomorrow in an effort to comply with the city’s plea to conserve water, said guest services/front desk clerk Shantel Bronema.

 The Inn is doing well on keeping food on hand for their “free breakfast,” though they had to make an extra run this morning, Lisa Mullen said.

 Mullen normally works at the Heartland Inn in Coralville, but was evacuated from her job there Saturday. She lives in Cedar Rapids “on the Northeast side so we’re one of the lucky,” Mullen said.  She came in to this Inn to help with the overflow of guests.

 Seeing the widespread flooded areas from her drive on I380 left her awestruck. “It’s just devastating. It’s indescribable.”

 Tom Harmer, 53, who lives at 335 13th Ave. SW “between L and M streets and 15th and 8th avenues close to the city barns and in a kind of a hollow,” evacuated his home Wednesday. Their home was nearly washed away in the flood of 1993, he said, and they have slowly rebuilt and added to their home.

 “We never took vacations,” Harmer said. “Our house was our vacation.”

 He and his wife, Elizabeth, and two of the couple’s adult children lived in the home. So did two cats who are now in the care of his oldest son and his wife. “She’s allergic to cats and she still offered to take them,” he said with a look of wonder passing over his eyes.

 They had about 5 hours to try to rescue some of their belongings by bringing them to a higher level in the house. Harmer admits he’s an electronics nut and said he and his family members were able to move the electronics equipment to the top level of the 11/2-story home, but he’s still not sure if it is safe.

 The items with “sentimental value, the memorabilia,” Harmer said, “was all on the first floor.”

 After the 1993 flood, Harmer said, “it took a long, long time” to get the home habitable.  He knows he will have to face rehabbing the house again. “I don’t think we have any choice, honey. We still owe on a second mortgage,” he said, the pain obvious in his eyes.

 He’s concerned, too, about how active a part he can take in the work ahead. “I have peripheral artery disease. One time up the stairs and I’m done.”

 He is,  he said, “thinking about tomorrow but living for today.” He’s smiling and dispensing hugs and good wishes to other evacuees here. The cheer seems welcome.

 He and his wife, Elizabeth, have lost the security they once felt, he said, his eyes again wincing with pain. “We’ll be worrying day to day if we’re going to be flooded.”

 Ashley Lungstrom, 21, has not only herself to worry about but relatives battling floods in Wisconsin, too. Though she and her roommate were forced to evacuate their apartment on K Street SW and had to move 7 computers and the associated accessories, she at least didn’t have to worry about small family treasures. “Most of the stuff with sentimental value I left with my parents in Fort Atkinson (Wisc.) So far, my parents aren’t in danger of flooding.”

 When she talked with her landlord last, “the water was halfway up the first story and a basement wall had caved in.”

 A student at Coe College, she works in the college’s computer department. Her plans “right now are to wait for the flood to mellow out; go back to work, if it’s available.” If work isn’t available, she said she’ll be volunteering to assist with the flood clean up.

 On the personal side of the story, my mother and I are both safe.  We took very little with us and moved very little out of harm’s way for two reasons: We’re both very limited in what we can do physically and we, after consulting the citizen hotline, didn’t anticipate the flooding would be as severe as it likely has been at our ground-floor apartment.

 Two friends from The Gazette, Janet Rorholm and Cindy Hadish, stopped to assist us evacuate Tuesday. I told them we could not worry about what was in the basement because there was no place to take it. Besides, we’ve been in the apartment for 15 months and have needed only one thing from the basement in that time. That indicates to me that it is less than important to our daily living.

 I am concerned that we may have lost many of the family pictures hanging on the walls, and we had many, many treasured photos.

 Getting across town for my 3-times-a-week dialysis treatments is likely to prove a challenge and once there, the unit itself is in disaster mode which means treatments will only be 3 hours long until further notice.

 So far, I’m lucky that I can get to treatments and that the center itself was not flooded. Celebrate the small things, I guess.

 Ironically about the only thing saved was my community knitting projects; 7 hat and scarf sets for KCRG-TV9’s Coats for Kids; three baby sweaters and 80 squares completed for an afghan requiring 120 squares for the Pine Ridge Reservation in the Dakotas. Cindy Hadish, seeing them lined up on our living room couch, gathered them up and said she’d keep them safe for me — probably at work — until we have a place to take them back.

 We will survive, but it’s going to be difficult starting all over again.

 

Another evacuee here, after we’d talked a bit, said “God never gives us more than we can handle.” That’s comfort, but feels a little thin at the moment. 

June 14, 2008 Posted by | kidney | Leave a comment

5 stages of grieving

My Primary, Jane – she who speaks for me with the care conference committee, bolsters my spirit, tracks my labs, etc. – stopped me on the way to my recliner a couple of treatments ago to get my input on a report she was assembling.

As part of their ongoing training, she said, the staff was trying to get a feel for how dialysis patients deal with the five stages of grieving since those suffering from chronic illnesses go through those stages as well.

Yes, we do, sometimes all five stages at the same time.

What are those stages:

  • Denial – this can’t be happening to me
  • Anger – why me?
  • Bargaining – attempting to make deals with yourself or your higher power to change things or stop them
  • Depression – overwhelming feelings of hopelessness, frustration, bitterness, self pity, mourning the future. Feeling lack of control, feeling numb. Perhaps feeling suicidal.
  • Acceptance – You have to accept the loss, not just try to bear it quietly. Acceptance is different than resignation.

Psychologists say the process of grieving is similar whether you’re grieving over death, divorce or a life-changing chronic illness.

So how am I doing?

Denial – I tell people I’ve changed my name to “Cleopatra, the Queen of Denial.” I’ve used that joke for years, but it still remains the truth. I assume I’m still in denial because I am still having major problems controlling my liquid intake. If I were in acceptance, would I not willingly do all I need to do to ease the strain on my body from non-functioning kidneys? I would think so, but that is not true yet.

Anger – I have little flashes of anger that flair mostly from frustration at the roadblocks the disease and my physical deterioration cause. Right now, I get very angry when the pains in my legs and feet become bothersome (usually about an hour before I can take another pain pill). As I said in the last post, I haven’t had that big internal or external blowup about this whole situation and “why me.” The why me was immediately thrown out for “why not me?” I don’t feel like I have a dark cloud hanging over me. I don’t feel singled out for a dastardly fate. I’m more likely to say, “I must have been a real turd in a former life to give me this kind of karma.”

I’ve also mellowed, I guess, because I’ve realized for some time now that anger is pretty useless in most cases. Doesn’t seem to help with things large or small and is really bad for my blood pressure. I seldom even deal with counting to 10. My attitude is usually, “well, that’s the pits. Now what do we do to solve the problem.”

Bargaining – I’m still not sure who, on a higher level, to bargain with. I suppose I do bargain with myself with those seeming selfish interests winning out over the sane, prudent path. Most of my personal bargaining seems to be over that next drink of iced tea. My mouth is always parched, it seems. Some of that comes from the diabetes, of course, some of it, I think is just knowing I’m not supposed to drink makes me want to drink. Must be the kid in me. huh?

Depression – Well, yeah. Who wouldn’t be occasionally? I don’t think I’ve fallen into a big time funk, but there are days … and sometimes hours during days … that depression settles in pretty strongly. Those are the times when I wonder if I’ll ever feel well again and prompt me to ask questions like, “Mom, will you still love me when my body’s lobster red and covered with weeping blisters?” (Asked after bright red contact dermatitis set in on the front half of my right foot shortly after the prognosis from the dermatologist that what’s happening on my thighs is like what already happened on my calves.)

That depression creeps over me, too, when I see dialysis patients with prosthetics — sometimes double prosthetics — getting their treatments. That’s when I begin wondering, “What would be the final straw that would make me say, ‘Enough, already. No more dialysis. Just let me give up the ghost for real.'”

One of the things they mention in depression actually is the thing that makes me feel most angry: loss of control. I really do feel like a pawn in the overall chess game sometimes and that makes me angry, though I try not to express that anger. Don’t read that wrong. I don’t feel like all my anger is suppressed, but I see no sense in railing at people who are trying to help me. It seems not only unproductive, but sometimes destructive.

Acceptance — I’m not sure if I’m really there, but I am resigned. I know dialysis is the only way to keep me alive right now. And for right now, I prefer to be alive.

 

 

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

Today’s lesson

“I try to stay positive and patient.” — Drew Wall

Drew (pictured above) is an 11-year-old kid from Cedar Rapids who says he’s trying to lead as normal a life as possible despite losing his right leg to bone cancer in April.

Tough lesson for an 11-year-old to learn and a reminder to me to keep it positive despite the drain chronic illness puts on my life, physical and emotional, and be patient: People are doing the best they can. 

Seeing his photo in today’s paper also brought a pang to my heart because it reminded me of my son’s amputation a few years ago. 

There were lessons to be learned there, too, though it wasn’t the way a mom wanted to learn those lessons.

Aaron was mid-20s, still knocking around the world trying to find himself (he still hasn’t, but that’s another story) when catastrophe hit in the form of pains in his right foot and ankle. They bothered him  enough to visit the University of Iowa emergency room where they gave him a perhaps cursory once over and sent him away, telling him to take some ibuprofen and check with a foot doctor. His foot was already dragging a bit by then.

Aaron, unemployed and uninsured at the time, took the ibuprofen and tried to ignore the growing pains. A couple of days later, friends convinced him he needed to seek medical help,  quickly.

It was July 3. The telephone rang at work and I answered.  Aaron said he was at the Mercy Hospital emergency room and wanted me to come be with him.  I rushed to the ER. The nurse showed me to the room where they were treating Aaron.

I took one look at his right leg and feared he was going to lose it.  The foot was already a necrotic blue/purple and cold to the touch. The ankle and calf looked dusky. I could tell Aaron was in extreme pain. The doctors said blood clot(s) were cutting off his circulation to the right leg.

Blood clots in someone in their mid-20s? Clots so severe they were jeopardizing his leg? In his 20s? It’s improbable.

But so it was. The doctors tried many things trying to dissolve the clot, trying to break it up physically by running a thin wire through the vein. But nothing worked.  The clot was “too leathery,” according to one of the doctors, to break up or be dissolved.  When he told Aaron the chances for his retaining use of his leg were very slim, Aaron opted for amputation because the pain was too great to think about enduring it for weeks or months and ending up – probably – with an unusable limb.

So, by late July that year he was out of the hospital minus his leg from about six inches below the knee and with hospital and doctor bills in the hundreds of thousands of dollars hanging over his head.

Frankly, that’s still his situation today, but that story and the story of how a mother survives (oh, how I empathize with Drew’s mother) is for another time. This is about just one of the lessons I learned from Aaron: Accepting.

He has a terrible temper (must be his dad’s genes), can explode in anger with torrents of foul language and energy that can result in broken objects.

I’ve never seen him rail at his fate with his leg. Never. He accepts it. How, I don’t know. I think I would have been angry in the hospital and still angry today.

A year or so after the amputation, I asked him if he ever felt like exploding over the amputation, he shrugged his shoulders and said, “S**t happens, Mom.”

 But then, I haven’t really cried or busted chairs or spewed sailor language over my life-changing medical experience. I’m trying to be accepting.  I’m trying to be “positive and patient.”

NOTE: I’m getting frustrated with the images here on WordPress.  No matter how I try to align them, they seem to post to the left with a big honking piece of what we used to call white space in the newspaper business.  Anyone know why or what the workaround is?  Is it simply the template I’m using here?

June 4, 2008 Posted by | diabetes, dialysis, fistula, health, kidney, renal diet, renal recipes, transplant, weight loss | Leave a comment

The cost of quality care

Things have changed in dialysis care in the last few years, according to reading I’ve been doing (Check out Bill Peckham’s blog, Dialysis From the Sharp End of the Needle, for informative discussion and links to further information.) and my doctor friend who has an abiding interest if not a specialty in nephrology. 

Many of the changes are due to changes in Medicare coverage for treatments and rising costs to the centers providing dialysis.  That Medicare covers dialysis is a blessing to those of us – the vast, vast majority – who need the treatments to live but could not afford them without the subsidy of the government. So I thank god, whomever or whatever she may be, that the assistance is there. I’m not ready to say goodbye to life yet.

But even the smallest decrease in Medicare help, the seemingly inconsequential cost saving measures used by a center, can affect the treatment patients receive. Case in point, gloves and adhesive wound covers. Little things that can ripple into bigger concerns.

Thanks to ihatedialysis.com

I’ll get to the case in a second, but first a brief bit of background. Medicare, my Friend Doctor says, used to pay on a per treatment basis: you got three treatments a week, Medicare paid for three treatments a week. Several years ago, Medicare switched to paying per patient rather than per treatment. What does that mean to the patient? If you need more than three treatments a week, forgiddaboutit. Medicare ain’t going to pay for it and it’s unlikely the dialysis center is going to absorb that extra cost, and believe me, it can be considerable, especially if figured in “retail” medical dollars instead of the adjusted rates provided to insurance concerns, Medicare among them.

 The cost cutting measures by the individual centers are understandable, but one of the more recent at my center has me itchin’ to do some bitchin’.

A couple of weeks ago, one of the techs or nurses complained about the gloves in the new “put on” and “take off” packs.  The packs are tidy little diaper-tucked bundles that contain the sterilizing solution, a mask for the patient, guaze pads, etc., for cleaning access sites, catheter and fistula. She said she hated the new gloves because they were difficult to put on and tore easily “but the new packs are cheaper.” Uh huh.

As for the patients, the new adhesive wound covers, a nurse said last night, are causing problems for many patients including me.  I’m always a little sensitive to adhesive and I’d noticed that the adhesive on the catheter patch the last several times was driving me to scratch – as best I could – incessantly, digging as deeply into my flesh as possible.

That’s not good. It can cause irritation and possible infection, which is especially dangerous since the catheter is so close to the heart and taps directly into the jugular vein.  I try not to scratch, even when the itch is driving me bonkers, but sometimes you just have to scratch to retain your sanity.

But, the nurse last night said, the packs are $2 each cheaper than the old ones. I suppose $6 a week for the 100 or so patients that dialyze there is nothing to sneeze at, but it does add the tiniest of burrs under the saddles of patients who are already pretty nearly maxed out with discomfort, fatigue, disillusionment and depression.

And the nurses/techs and their gloves? If I had to change gloves as many times as they do, I’d be itchin’ to be pitchin’, too.

June 3, 2008 Posted by | diabetes, dialysis, fistula, health, kidney, renal diet, renal recipes, transplant, weight loss | 6 Comments