Here We Go Again

by David Goldman

It’s been a couple of bad luck weeks for me when it comes to finding a kidney donor. Two weeks ago my best match was told she couldn’t donate because of her own medical issues, and this week the same thing happened with my other best match. Hopefully, both of them will get things resolved and they’ll quickly return to good health. In the meantime, I’m back at square one in my search for a donor.

If you’re new to this subject, here are a few facts about kidney failure and living vs. cadaver kidney donation:

• ·      When you have kidney failure, you have two choices: dialysis or a kidney transplant.
• ·      A kidney transplant doubles the life expectancy of a patient versus being on dialysis. The lifespan of a 40-45 year old male on dialysis is approximately 8 years.
• ·      The wait list time for a kidney averages between five and six years.
• ·      Short and long term survival rates are significantly better for transplants from living donors than transplants from deceased donors. (On average, approximately 18 years for a kidney from a living donor compared to 13 years for a kidney from a deceased donor).
• ·      Surgery for living donors is minimally invasive and almost always done through a laparoscopic procedure.
• ·      Much more information about living kidney donation can be found at the Living Kidney Donors Network (www.lkdn.org).

 Wednesday, I spoke with one of my transplant coordinators who told me a few people have asked to send in blood samples to see if they’re compatible matches and this is a very good thing. She also told me to get the word out again to see if there’s anyone else willing to donate and that’s what this post is about. They say you can’t just ask people to donate. It puts people in a very awkward position with no graceful way to exit. You’re supposed to just tell them your story and hope that they offer to donate. The good thing about a blog is, you can come right out and ask but nobody’s put in that uncomfortable position. Another one of the wonders of the Internet!

My story is pretty simple. I was diagnosed with Type 1 (or juvenile) diabetes when I was a year and a half old. I led a very normal life with a few diabetes related bumps in the road. When I was 27 I found out I had diabetic nephropathy (diabetic kidney disease). At that time, kidney transplants were no longer experimental, but they were a lot more rare than they are today. I was very lucky. My sister wanted to donate and when I was 30, I received a successful kidney transplant from her. That kidney worked perfectly for almost 25 years when it eventually failed. I went on dialysis this past December. Since then I’ve been hopeful of another transplant.

Getting back to asking or not asking someone to donate. This post is clearly asking anyone who is interested to consider donating. If so, please call the University of Minnesota Transplant Center. This is where I had my first transplant as well as my pancreas transplant. Their number is 1-800-328-5465-Option 1. All of your information is kept confidential. They will not use your name or divulge any of your personal or medical information to me.

And, I thank you!

Round Two

by David Goldman

I’ve been on dialysis a little over nine months now. This whole time I had the transplant carrot dangling in front of me and that’s been a good thing. It kept me moving forward. Being “sick” is a lot easier to deal with when you see the opportunity to be cured. Even though a transplant is really more of a trade off, it’s still better than being on dialysis.

Several people had volunteered to donate and out of those a few were good blood matches. I had to clear a few medical hurdles in order to be okayed for surgery. That took longer than I thought. I was anticipating a few weeks but it turned out to be a few months. Then, the candidate whose blood best matched mine on several critical parameters had to go through a battery of medical tests as well. That’s where things really seemed to slow down.

Without going into detail, my friend had to have a couple blood tests done, wait a few months, and repeat them. Whether or not she could donate would be determined based on those results. Both of us have anxiously waited for that time to pass. Finally, last week the day came and the test was done. Of course, it was immediately before the holiday weekend so we had to both wait nervously even longer for the results. Yesterday they came in and they said no transplant from this candidate.

Here’s the funny thing: I feel strangely relieved. It’s not that I was nervous about surgery or anything like that. It was just the waiting. I really detest the waiting. Hearing no certainly wasn’t as good as hearing yes, but putting an end to this chapter really does feel like a weight off my shoulders. Not that this whole thing is over, but at least there’s a course of action to be taken which is better than waiting for time to pass. My transplant center will select the next best possible donor and he or she will go through the same series of medical tests. Maybe there will be hitches again or, maybe not. At least having an answer and a course of action feels good to me.

It’s having that goalpost in front of me that keeps me moving forward. If the next step is within view and attainable, it makes scheduling my life around dialysis, its restrictions, and all the problems of kidney failure, tolerable. I can still see a light at the end of the tunnel, and after all, I think that’s what it comes down to. As long as I can see a possible solution to this problem, I can make peace with it. Although I’d like to think that if all the transplant opportunities were to go away, I’d still be able to find something that would keep me in a positive mindset.

I know my friend never expected it to turn out this way. And I know she hates that it did. But she shouldn’t and I hope she knows that. What she did by offering to donate a kidney to me was in and of itself an extraordinary gift. As soon as she knew my situation, she came forward and that is not an easy thing to do. I didn’t tell her of my situation in person, but with the people that I did tell face to face, I could immediately see in their eyes if they were going to volunteer or not. For those that didn’t, their eyes showed me the indecision, the fear, or hesitancy that was going through their minds. I KNOW they all wanted to donate but for a variety of completely valid reasons, they couldn’t. But for this friend and the others that said yes, and for my sister who donated to me the first time, the look in their eyes said everything, and I can never thank them enough.

The Eyes Have it

by David Goldman

I think it’s time to go back to the eye doctor. Every straight line I look at doesn’t look straight. It has a dent, like this:

Irritating to say the least.

I’ve mentioned my vision problems before. I used to have great vision. I suppose most people can make the same claim.

My ocular dysfunction started at the beginning of my senior year in college. I was still licking my wounds after being dumped like a bag of week-old garbage by my longtime girlfriend. It came as a shock to me. It especially shocked me when I found out I was being replaced by a grad student who studied fish. That’s right, an ichthyologist. You know the type. Apparently, based on what she told me in the 14-second phone call, I wasn’t fulfilling her intellectual needs and she needed someone with greater mental abilities.

So, to try and move on with my social life I took a job doing cooking and checking IDs at a new bar that had opened on campus. An odd pairing of job functions, but it worked. I got to eat for free the nights I worked and being the doorman gave me the opportunity to meet lots of new and interesting people (read: girls).

Things were going along smoothly, but one night I noticed I couldn’t see very well out of my left eye. I had “floaters” in my field of vision. I later found out these were little droplets of blood. I went to the eye doctor and he told me I had diabetic retinopathy – a problem diabetics sometimes develop in which new, brittle blood vessels start growing on the retina and then rupture, hemorrhaging blood when the body’s blood pressure rises through exertion or from other stimuli. Within a couple of weeks I had the problem in both eyes.

The doctor I was seeing in my college town seemed like he was up on all the latest procedures and scientific advances in the field. I think it’s a requirement for being a doctor in a college town. He told me I needed to have a new laser treatment done on my eyes. This was 1977 and still a time when I heard laser, I thought of James Bond strapped to a gold table with a laser slowly moving toward the Bond family jewels. This, as Aurich Goldfinger is telling Bond he doesn’t expect him to talk. He expects him to die. Lasers beaming into my eye still had that futuristic, experimental, and yet, obscenely painful connotation to me. Call me juvenile.

But I was assured it wasn’t too bad and the local college doc gave me a referral for a couple of doctors back in Chicago. Coincidentally, a friend of mine’s dad was a diabetic and he had just had the same problem and the same procedure with great results, so home I went.

The retina specialist examined me and concurred with the previous diagnosis and treatment. He told me I would need three or four of these laser treatments. He explained that what the laser does is burn away those newly forming blood vessels forcing the blood to flow through the older, stronger, rupture-resistant ones. Seemed to make sense to me. The doctor was a short lil’ fellow with a Napoleon complex, but he was supposed to be very good at this procedure.

The first session wasn’t too bad. The worst part of it was probably the clamp used to hold my eye open for what seemed like decades at a time. The laser treatment was relatively painless. I went home after the first session with a dull headache and a patch over my eye. I was told I could remove the patch after 24 hours.

The next afternoon I eyed the clock (so to speak) all day until the unveiling time arrived. I removed the patch, opened my eye and immediately shouted, “Shit!!” It was like looking through a cardboard paper towel roll. I had no peripheral vision on the left and limited peripheral vision on the right. I called the doctor’s office and because it was Saturday, had to wait for someone to call back. The doctor on call phoned me shortly and I told him what I was seeing. Or not seeing. I could hear him rustling papers, most likely my file. He finally said that considering where my problem was located, a significant portion of my retina had to be burned away to prevent bleeding, and that portion would affect both my left and right peripheral vision. I asked him if they, meaning the doctor who wielded the laser, knew this beforehand and he said, “Oh yes, didn’t he tell you?” A plethora of smart-ass replies jumped into my mind but I withheld them. I told him I didn’t have any idea this was going to happen. He said if this wasn’t done, I’d end up being completely blind.

I was actually able to accept that fact rather easily – the lesser of two evils and all that. But, as I’ve mentioned before, I just would have liked to have known this before I took the patch off and half my vision was gone. Now you can call me juvenile and difficult.

I had three more treatments on that eye with no more significant loss of vision.

That is, if I don’t count portions right in the middle of my sightline.

The right eye was a little more difficult. Because the problem on that retina was occurring near the optic nerve, they couldn’t do the laser treatment. Instead, they were going to do cryo-surgery. Something else that sounded like it came from a James Bond movie. This time they were going to slice my eye open, remove the contents and with frozen gas, burn the offending areas of the retina. Then they put the pieces back in with some new, manmade eye-jelly and things should be okey-dokey. It sounded almost pleasant if it wasn’t being done to ME! Oh yeah, I also had to be awake for this one.

A couple weeks later I find myself lying face up on an operating table. Head locked in place by some vice-like contraption, straps to hold my hands down, and another one of those damned clamps holding my eye open. Did you ever see the movie A Clockwork Orange? They use those same clamps to hold open the eyes of the main character while they try to rehabilitate him. They’re really quite unpleasant.

As the procedure begins I see a scalpel coming down toward my eye. I quickly realize the straps are on my hands to keep me from defending myself. It’s not easy watching a highly-sharpened blade come down, touch, and then cut your eye. To be honest, it doesn’t hurt. It’s just the thought of it. Apparently, I was thinking about it too much because a few minutes later I started feeling nauseous. I made the pronouncement that I thought I was going to vomit to a synchronized chorus of “NO!!!” It seems if I did puke, they would have to let me turn my head, and if I did turn my head and toss my cookies, the few contents of my right eye that were still in place would go sailing across the operating room. Instead, they gave me oxygen, which calmed my stomach and they completed the operation.

Unfortunately, the results weren’t too good. The surgery was done on the Friday of Memorial Day Weekend, 1979 and Dr. Hobbit, was taking a long weekend off. He told me to keep the patch on until I came into his office Tuesday.

Tuesday came and as he was about to remove the patch I asked, “Will I lose any peripheral vision this time?” He assured me I wouldn’t. The patch came off and I could see – nothing. Couldn’t see a damned thing. Blackness, and more blackness. Without examining my eye he told me to give it a couple of days. I suggested he look in my eye to see if something was wrong. He assured me he didn’t have to. Uh-huh. It was no better the next day or the day after that. By Friday I insisted that he take a look and he did. His examination found the retina had come completely detached and it was too late to do anything about it.

The fact was, I could accept all of this. A little vision was much better than no vision, which is where I would have been had this all happened to me 10 years earlier. It was just the attitude of the doctor that got to me. I could go on much longer about him but I won’t. Suffice it to say he’s still in practice in the Chicago area.

My ex-girlfriend actually showed up later that day. I was sitting on the front porch, admittedly feeling a bit sorry for myself when she pulled up. By now I was well over her but I was intrigued by why she was coming by. She told me she wanted me to come to her wedding. When I stopped laughing I told her in no uncertain terms that I did not wish to partake in the nuptials. She told me I was immature and stormed away.

Perhaps I was. But it was at that moment that I smiled because I knew how lucky I was just to be able to see her driving away.

Hurricane Irene Report

Thought I'd give you my first hand report of how things look during Hurricane Irene.

The Waiting IS the Hardest Part

by David Goldman

Back in December when I first found out my transplanted kidney had failed, one of the first things I did was let all of my friends and family know what was going on. I told them that I was starting dialysis and the only “cure” was another kidney transplant. The number of people who said they wanted to donate overwhelmed me. At times, I was left almost speechless. Organ donation is clearly one of the most selfless things a person can do, but it’s not like donating old clothes to charity. It’s real, knocked-out cold surgery that always carries risks. But about half a dozen people volunteered to donate and took the steps to follow through. Out of those people, my transplant center tested for the best available match through a process of blood and physical testing.

Once the best match was selected, she had to go through medical testing to make sure she was a good surgical candidate and of course, to make sure her kidneys were working properly. There was one little hitch in her workup that meant she had to wait three months and have the test redone. That was at the end of May, so she’ll be getting tested sometime at the end of August or beginning of September. If that test is normal, they’ll schedule the surgery.

I’ve been doing really fine on dialysis. It’s certainly a pain in the butt (figuratively, not literally), but I feel pretty good, which is a lot more than many dialysis patients can say. But I’ve got to admit, I’m really wishing we could get this thing done.

It’s not so much that things are bad the way they are now. Giving up a few hours, three days a week isn’t ideal but it isn’t horrible. I have to be on a diet that pretty much eliminates all foods that have flavor but come on, these days which of us isn’t on some form of that diet? The hardest thing about all of this is the waiting.

And waiting.

I’ve always been a bad at waiting. When I want something, I want it now and can’t and don’t want to wait to get it. When I was a kid I couldn’t wait for my birthday to get my present. I would scour all the hiding places in the house until I found it just for the satisfaction of knowing what it would be. I really haven’t changed in that regard. Now, waiting for my transplant is like waiting for that cool new toy. Plus, since I’ve known I was going to need a transplant it always seemed like it was just around the corner. First I had to schedule my testing at the transplant center. I was hoping that I’d go in, everything would be peachy, and they’d give me the go ahead. My transplant coordinator told me that almost never happens. Still, I hoped and thought that it was going to happen for me. After three days of being poked, prodded, and peered at, my coordinator said everything looked pretty good. The problem was, she doesn’t make the decision. The transplant docs do, and after going over my results they had just one little thing that needing checking. After that turned out to be nothing that would threaten the surgery, they wanted one more thing investigated, and so on and so forth. The whole time I was thinking they’re going to find this was really nothing and then they’ll schedule the transplant. Then, once I was cleared it was a similar situation for my donor.

Would I have been happier if they told me right off the bat the transplant wouldn’t take place for at least nine months? I really don’t know. The anticipation of having it done in the immediate future kept me going and kept my spirits up. Then again, having it constantly pushed back gets old really fast.

It’s been good that the weather has been nice for the last few months. Being cooped up in the house filled with anticipation makes it tougher still. Cabin fever is bad enough but it’s worse when you’ve got that carrot dangling in front of you because as many steps as you take forward, it keeps moving further away. And now that I think about it, when I found out at the end of May that it was going to be another three months until we knew anything, I did feel better in a way. At least I knew it wasn’t happening for a finite amount of time and it allowed me to enjoy my time a bit more. It’s actually been a really good summer!

So, while I’m waiting through what I hope is the home stretch, keep your fingers crossed for the hope that in a few weeks I’ll be able to write a post and say, “Finally! My transplant is scheduled for…”

Flying Lettuce and Other Mishaps

By Roberta Durra

My ex-husband and I weren’t officially divorced. That would happen a few years after paying each of our lawyers enough money to move up several tax brackets. Eventually, we’d fire them and file for divorce at the “Legal Grind”, a coffee shop that offered coffee, donuts and divorce. At this time we were separated with restraining orders. Ex, had a new girlfriend, Audrey, and I had a new boyfriend. We were all too old to be each other’s girlfriend or boyfriend, so I think we referred to our partners as, partners. At this point in the evolutionary scale of learning about myself, I didn’t completely understand that the root of my problems came from my inability to say NO. Never wanting to hurt anyone’s feelings, I rarely did what was best for me.

I’d never met Audrey so I found it peculiar when she called to invite me and my partner to her Hanukah party. In an overly friendly manner I quickly answered, “I’d love to come”, while thinking I’d rather suck eggs. Had I been honest I would have said, “Audrey, it’s been really nasty between me and Ex and I think we’d both rather swim in shark infested waters dressed as wounded dolphins than spend an evening together at a Hanukah party”. But I was a people pleaser by nature. I didn’t want to appear rude and most importantly, didn’t want to disappoint my seven year old son who had been disappointed enough.

In the back of my mind I was intrigued by the idea of blended families. Audrey, her ex-husband, and his new wife would be there. Maybe we’d all bond at this Hanukah celebration amidst dreidels and chocolate coins. I ignored the voice that told me angry ex-spouses and fried potato latkes don’t mix. But I couldn’t say no. In fact, I offered to bring some food.

I asked my boyfriend/partner if he’d come with us to Audrey’s party. He had no problem answering,

“NO”

He knew what he did and didn’t want to put himself through. I did not.

Before going to Audrey’s party I tried to stop thinking of her as “Audrey 2”, the man-eating plant in Little Shop of Horrors. I didn’t want to slip and call her that. Unless I had to.

I spent the next week thinking about what food to bring to the party to impress the girlfriend of the man I hated. I decided on a big salad with elaborate fixings. That, I thought, would show her and her extended-blended family what a good cook I was.

As the time neared for my son and I to leave for the party, I had not grocery shopped, showered or dressed. Instead, I sat on the couch thinking of excuses that would sound legitimate when I called Audrey 2, to cancel. Telling my son we weren’t going to the party, and watching the tears well up in his eyes prompted me to splash water on my face, get dressed and get us both out the door and headed to the party. I’m most comfortable wearing jeans and a t-shirt. That night I wore a black dress and high heels that pinched my feet the minute I put them on.

My son and I stopped at the market to pick up a salad from the salad bar. The salad bar was closed.

           

            “Can’t we bring popsicles?” my son suggested.

           

            “Not tonight honey. It’s Hanukah,” I said, hoping he’d stop talking.

I ran awkwardly down the grocery aisles, my feet throbbing and heels click-clacking on the market floor. I pulled bags of lettuce off the shelf as though they were giving it away for free. Next, I ran to get canned Parmesan cheese - the kind I never buy. I grabbed an expensive ceramic, ovenproof baking dish and high-tailed it, click, clack, to the checkout line with my son trailing behind.

While we drove to Audrey 2’s house, my son bit-open the bags of lettuce. As he spit out the plastic I said, “Let me see the dish”. It was covered with a layer of dust. Parked near Audrey 2’s house, fifty minutes late for the party, I cleaned the baking dish with crumbled newspaper from the floor of my car. With a look of disdain I thought not possible for a seven year old, my son asked, “Isn’t that dirty?”  Not answering I pierced open the Parmesan cheese with my car key and doused the lettuce in cheesy powder. “Let’s go”, I said, and we ran down the street to Audrey 2’s house.

While running, lettuce pieces flew out in all directions from the uncovered dish. My son picked up the lettuce and based on the five-second rule, put the lettuce pieces back in the casserole dish. Standing outside Audrey’s house, looking at the bowl of dirty lettuce, it suddenly hit me. I didn’t want to spend time with these people. I wasn’t ready to blend. I had no idea how I was going to fake goodwill toward Ex. I certainly knew I wasn’t doing my son any favors modeling a lunatic for him. Then clear as a bell, I knew that next time I’d just say NO! Easy as that. I guess some people have to run down the street in heels with dirty lettuce flying in all directions, to learn that lesson. I took a deep breath, put my free arm around my son and knocked on Audrey 2’s front door.

            “Happy Hanukah”, my son and I said in unison as she opened the door.

            “Welcome”, she said, as she took the salad. “What a nice salad. You shouldn’t have.”

The party turned out to be pleasant. I nodded a quick hello toward Ex while he sat playing piano. I think he nodded in return, but was probably nodding his head to the beat. Audrey 2 had nice friends and we talked standard party talk until Audrey offered to take me on a private tour of her home. When we reached the bedroom I meaningfully put my hand on her arm and shook my head from side to side. Suddenly channeling my grandmother, I said, referring to Ex…

           

            “Audrey, Audrey, Audrey. WHY a musician?”

            And she replied, “Because I’M a musician. My ex-husband is a musician. And all of my friends are musicians."   

Fair enough.

I wasn’t invited back to the next Hanukah party. In fact, I can’t remember if Ex and Audrey actually made it to the next Hanukah together. There have been lots more Audrey’s who have come and gone. One special woman became a friend, and my son and I recently attended her wedding. Ex and I are pleasant to each other and the best news yet is, I occasionally flat-out say, NO. Oh, and I’ve stopped bringing dirty lettuce to parties.

When I’m not running late.

Play Ball!

by David Goldman

As I’ve said before, I had a pretty normal childhood. My diabetes was never treated or perceived as an anchor by myself or my family. It seems like my summer days used to be spent outside playing ball and hanging out with friends. I know it wasn’t this way, but it sure seems like those days were always sunny, 80°, and light till 10:30 at night.

My friends and I used to have a great time. For a few years I went to day camp with a couple of them. Camp was fun, but we always were forced to do the prescribed activities such as arts and crafts, playing board games and watching movies on the rainy days. Don’t get me wrong. These things were all fine, but at that age all I wanted to do was play baseball or any other outdoor sport. Swimming was good, but somewhat tainted by the fact that we had to have lessons rather than just a free swim. Those free swim days were always a bonus. I’m sure the counselors thought the same. After all, that gave them time to sneak away and have a cigarette.

But it was after my summer camp days that formed my most everlasting memories of summer. In the spring of 1965 I was going to be entering fifth grade. Early that summer we discovered a little sand and gravel covered lot that was attached to a school in the neighborhood just west of ours. This little school was the Henry David Thoreau School. It was very small. We were never in it, but it appeared to have two, maybe three classrooms. The schoolyard, the sand and gravel filled lot, was also pretty small. It was a rectangle measuring maybe 100 feet wide by 200 feet long. One end had a strip of concrete on the ground and the rest of the lot was filled with the sandy, gravely mixture. There was nothing else in there. Just this open space. It was just perfect for a bunch of boys looking for a place to play ball.

It feels like we played baseball in that lot every single day. We didn’t have enough guys to play a regular baseball game. There were usually about 10 or 12 of us. So, we improvised. First, we’d choose teams. Two guys were arbitrarily named captain and they’d alternate choosing one player at a time for their team. The game was called Shortstop Out. We didn’t play with a regular baseball. We played with a spongy rubber ball the size of a baseball. They cost a dime and they’d last through a couple of games if no one hit it on a roof. There was no pitcher. You stood on the concrete strip and tossed the ball up in front of yourself and swung. If you missed, you were out. If you put it into play, you had to get to first before the ball got to the shortstop, wherever he happened to be standing.

It was a simple game and we played it for days and hours on end. We got to the point where we felt good enough to challenge the 6^th graders who had to be introduced to the game. Back then, a year’s difference in age could’ve been equal to ten years. It seemed as if all the kids knew their place. You didn’t hang out with anyone older or younger than you. That was just how it was. But the 6^th graders accepted our challenge, assuming they would crush us because after all, they were the 6^th graders.

It didn’t go according to their plan though. We knew that lot like the backs of our hands. We knew just where to hit the ball to make it take a crazy bounce and our fielding was really good by that time. I don’t remember the score, but we won. It was humiliating for the older kids so naturally, they challenged us to another game the next day. We accepted and beat them that game too.

We had a great time playing ball that summer. It got to the point where we didn’t even make any arrangements. We’d all just get up in the mornings, hop on our bikes and ride over. At lunchtime we’d take a break and ride our bikes back home. As soon as we had gobbled down our sandwiches we were headed back.

I’m writing this because today is one of those days. Everything about it reminds me of those times that have become such a part of me. I can walk outside and “feel” exactly what those days felt like. If I take a moment I can even smell the memories – the smell of the bat, the ball, and the air around us. I can even see everything as I did then, out of two eyes. I can hear the guys trying to intimidate the batter with the drone of the  street traffic in the background. It only lasts a few seconds but it’s all there, all around me. For a brief moment I’m back there again. It’s truly like stepping back in time. I suppose those days were so enjoyable that I retained not only the details of what went on, but the atmosphere that came along with them.

I can only hope our generation’s children have memories like these -- memories that can carry them through a lifetime.