August 15, 2012 Leave a comment
Taken at Haystack Rock
One woman's oddball view of the good things in life.
March 14, 2012 4 Comments
It’s been two weeks today since my surgery and I thought I’d do a final update before I get back to writing about travel and gardening and other fun things.
First, I’d like to thank everyone for the cards, flowers, notes, food (WOW, the FOOD), calls and emails. Not a day goes by that I don’t feel blessed to have so many wonderful people in my life. My private nurse, Jim, has been a trooper as he watches me shuffle around like a 90-year-old, caters to whatever I need and drives me to my twice weekly blood draws and doctor’s appointments.
My donor, Jimmy, is driving and slowly getting back to work. I still have not noticed any Jimmy-like characteristics in me but I’m certain that will come with time. Maybe I’ll start liking beer more than wine and coffee more than tea. Hopefully, some of his cooking skills will rub off, too.
Many people have asked about the actual procedure and what happens now so I thought I’d share some information that many have asked about in this post.
The actual surgery consisted of surgeons first taking Jimmy’s kidney out via a laparoscopic procedure. The Cleveland Clinic has a great animated video on this procedure here. While they were working on Jimmy, they prepped me to receive his kidney. My existing kidneys did not have to be removed. They only remove the kidneys if they are going to cause longer term problems (for instance, if there is cancer involved) because it increases the surgical risks. They created a space in my lower right side and put the new kidney in there. Sure, I may be a bit lopsided for the rest of my life but that just means potential for a new wardrobe.
The Recovery Path
Before the surgery, they told me it would be about six to eight weeks before I could lift more than a gallon of milk. And, I really didn’t believe that it would take that long but as my body slowly heals, I can see I will need to be patient and not rush things. The good news is that the new kidney is already working hard. My kidney function before my surgery was down to a frightening 7%. I was constantly exhausted and the only way to describe how I felt was that it seemed as if my body was slowly shutting down. Within five days of the new kidney, my function was up to 59% — a level I haven’t seen in about 15 years. Needless to say, even though I lack stamina from the surgery, I feel incredibly healthy.
The first year is really critical. I am on a lot of immunosuppressants to make sure my body doesn’t reject the new kidney. The first three months requires monitoring twice a week and staying away from crowds, sick people and anything that could get me sick in any way. After that, my doctor’s visits and blood draws drop down to once a week for the rest of the first year. I’ll be on immunosuppressants the rest of my life which means there are lots of crazy things that I need to do that I never thought about before.
My little dachshund, Beau, can no longer sleep with me in bed. I can’t ever get a puppy under six months old because they apparently are disease ridden. I have to garden with gloves on because there are lots of nasty things in soil. I can’t touch rose thorns because they carry some sort of odd fungus. I can no longer travel to third world- like countries where all sorts of diseases I’ve never been exposed to could kill me. I’m also not allowed to travel internationally for a year (sorry, MAGNET friends, I won’t be joining you in Barcelona). I have to stay clear of prolonged exposure to construction sites. Which may be a bit problematic as we’re breaking ground on our new house next month. And, worst of all, I can no longer eat raw oysters or sushi. Two of my all time favorites.
Of course, none of it is anything I can’t deal with gladly for this second chance at a healthy life. After my three months of isolation, I am looking forward to getting back to work, going to Blossom to see the Cleveland Orchestra and spending hours (with gloves on) in my gardens.
Thanks again for all the support and, if you’re not sniffling or coughing, feel free to stop by for a visit.
February 23, 2012 8 Comments
I am six days away from having the procedure that will save my life. Next Wednesday my friend, Jimmy, will voluntarily walk into an operating room and have his kidney removed while they prep me in a nearby operating room to receive it. For him, it will be a two hour surgery. For me, about six. I am told I will immediately start feeling better because I will have a functioning kidney. For Jimmy, it will take about three weeks to feel normal because his body will have to adjust to having one kidney.
I’ve been wondering a lot lately how you actually thank someone for saving your life. Through his incredibly selfless act, he is giving me a life I would otherwise not have. Sure, dialysis would have kept me physically going for five or more years but that wouldn’t have been much of a life. On the front page of this Sunday’s New York Times, there was an inspiring article titled: 60 Lives, 30 Kidneys, All Linked. It talks about a 60-operation domino chain started by a Good Samaritan who volunteered to donate his kidney to a stranger and made possible by the efforts of a man who’s frustration with this 10-year-old daughter’s kidney transplant experience inspired him to create the National Kidney Registry.
The most intriguing part of the article for me was how these 60 lives are linked together forever. And although I’m sure Jimmy and I would have been friends and colleagues for the rest of our lives regardless of this surgery, now we will be linked in a way too few people can claim to be. I’m hoping some of his attributes get transferred to me with the surgery. He’s one of the most brilliant writers I know, he’s a fantastic chef and can charm just about anyone he meets. I’d be lucky if some of that rubbed off too. But I’m luckiest of all to have a friend who’s willing to do something this magnanimous.
January 27, 2012 17 Comments
This isn’t exactly happy or remotely on topic but so many people have asked me to keep them posted on my kidney situation and this is the easiest way for me to do it.
When I was 25 or so I was diagnosed with a degenerative kidney disease called IGA Nephropathy. You can read all about that here.
For people whose kidneys work the way they’re supposed to, they process about 200 quarts of blood daily to filter about two quarts of waste and excess water. Think of them as coffee filters. People with my type of kidney disease have filters that are constantly used without cleaning so that, eventually, the gunk just doesn’t get filtered. No one knows what causes it. They do know that African Americans, Asian Americans, Hispanics and Pacific Islanders are three times more likely to get kidney disease. They also know that it will eventually lead to total kidney failure. And that’s where I am 20 years after diagnosis. You can survive on 10% kidney function with the help of a lot of medication. But I’m at what’s called end stage renal failure. My next options are to start dialysis or have a kidney transplant. And that’s part two of this update.
The Kidney Transplant Process
The kidney donation process is a pretty rigorous one. It starts with a simple blood test that determines blood and tissue matches (more info here) but then it gets complicated.
First, I can’t really put in words how blessed I am that so many of my friends and family have been willing to be tested to see if they are a match. My family: Jim, January, Danny, Tony, Kate, Jae and friends: Jimmy, Mark, Kate, Kevin, Janice. I cannot even put into words how loved and blessed I am to have so many people in my life who would actually even consider giving me an ORGAN for crying out loud. It really humbles me. So thanks to everyone who tested and many others who have offered to do so if none of my matches work out.
The great news was that of all the people who tested, I had eight matches. Holy cow. I thought finding a match was like finding a needle in a haystack because, on average, people wait for an organ for three to five years. There are currently almost 92,000 people on the transplant waiting list. If you’re into stats, you can see them all here. But my blood type is A which means that I can get a donor who is A or O. And that’s makes it much easier than someone who is an O.
But the blood and antigen matching was the easy part. Once you have a match that person has to go through the two rigorous days of testing that includes everything from blood work to cat scans to kidney function. You see a nephrologist and a transplant surgeon. You have to be in perfect shape.
My niece and my husband were the first two to go through testing. Because the tests are so expensive my insurance company will only allow one person to go through the process at a time. Horribly inefficient when your organs are deteriorating but that’s a completely different subject. When I asked how much it would cost if I paid for multiple donors to get tested, no one could even give me an answer on how to go about doing it, never mind the cost.
In any case, both of them were turned down by the doctors because of what seems like the most minute health issues. So, my friend Jimmy volunteered to go in next. After day one of testing, he sent me this text “Just saw the nephrologist and he said my kidneys are like gold and you’re in perfect health.” At day two, his surgeon told him he would die of old age long after he donated his kidney and even offered to call his wife to tell her that. (On a side note, I can’t say enough about the care I’ve had over the years at the Cleveland Clinic. They’re rated #2 nationally for nephrology and my doctor, Martin Schreiber, is the head of the department and truly a phenomenal guy.)
The final test.
Jimmy and I will be put in front of the transplant committee next Thursday. They will look at both our medical records and debate the successful outcome of our surgeries in order to give us the green light. If all goes well and they approve, this could happen in March. Which would be phenomenal because my kidney function is down to 8% and it’s starting to get to me. We will both take all your crossed fingers, prayers and well wishes that this happens.
September 4, 2010 Leave a comment
A week in Arch Cape
If you’re into 90-degree beach vacations, you can stop reading now. I love those, too. But the Oregon Coast is a totally different thing. It’s rugged, vast, tranquil and cold. Well, maybe not cold as in Cleveland-winter-cold. But high 60′s during the day cold. Wet suits are a must for going in the water for any length of time.
I found a beach house to rent through http://www.vrbo.com/. You can also find it here: http://www.modernbeachhouse.com/?p=7. The house was great for eight adults and two kids and had a decked out kitchen, two bathrooms and a hot tub. The main reason I picked it was because it was right on the ocean.
This was the view from our deck:
The house was in Arch Cape, about four miles south of the heart of Cannon Beach. You could drive into Cannon Beach for the restaurants like the Wayfarer, where the herb buttered razor clams were maybe the best I’ve ever had and the view of Chimney Rock is spectacular. If you wanted to buy fresh seafood and make it yourself or go in for a quick but delicious lunch, there’s Ecola Seafood. I bought steamer clams, smoked mussels and salmon for dinner one night and it was unbelievable.
Cannon Beach also has a farmer’s market on Tuesday’s between 2PM and 6PM between June and September and it’s not like my Ohio farmer’s market because you can’t really find good tomatoes but you can buy Dungeness crab for $5.99 a pound, all sorts of crazy mushrooms foraged from nearby forests and the sweetest berries and cherries around.
Surfing lessons and wetsuits were on the agenda as well. We got it all through Seaside surf shop. They rent boogie boards as well, if you’re not into surfing. The spot to go Oswald West State Park. It’s a beautiful, quick hike into the cove.
A trip to Oregon wouldn’t be complete without a visit to my husband’s favorite brewery, Rogue. The closest one was a half hour away in an odd town called Astoria. Built on a rickety pier in what used to be a Bumble Bee Tuna Cannery, it had all the ales like Dead Guy that you can sometimes find in stores and a menu full of other ones that you just can’t find anywhere but at a Rogue. If you can talk one person into being the designated driver, it’s well worth the trip if you’re a beer lover.
On the way back, we ended our trip at my brother’s sushi place in Ahola, Mio Sushi. Yes, he’s my brother and yes, I’m biased. But it’s some of the freshest sushi anywhere. So, my shameless plug is to stop in and have Danny make a plate of whatever he deems the freshest that day for you.