THURSDAY NIGHT IS HEALTH CARE CHANGE NIGHT, a weekly Daily Kos Health Series
I’m seriously exploring the possibility of giving a kidney to Kitsap River, a kossack I’ve never met in person. She lives in Washington and posted this diary on the Thursday Night is Health Care Change Night series about living with kidney disease.
Before you put up all kinds of comments about what an angel I am, let me be clear...I have plenty of reservations and am not even sure yet if it is possible. And don’t ask for any more organs! I am very proprietary about my own body parts.
More from Kitsap and I below the jump.
I invited Kitsap River to post a request for donors on the series last year in the hopes that it might help her to find a donor. A few people in the comment thread offered kidneys, but as far as I know, did not follow through. I offered nothing because I once read an article about a woman who had been led to believe by a potential donor that she would be receiving a kidney. The "donor" went through the entire process in apparent sincerity, scheduled the operation, allowed her to purchase plane tickets, and then didn’t show up, stopped answering her phone calls and gave her no explanation. She later learned that there is an entire class of serial un-donors. I am not interested in being an un-donor so let me be clear from the beginning. I still have questions and I don’t even know if I can meet the requirements for organ donation.
I can, however, seriously pursue the possibility and write about it so that others can learn about the risks and rewards of organ donation. And, if at the end of the process it appears that I am a match for Kitsap, I might even be able to give her a kidney.
The first step in the process was contacting a man named Eric at the University of Washington to tell him I wanted an application packet. I followed up, after sending in several of the forms, with an email asking if he objected to my journaling my experience for the Thursday Night Series. I was quite surprised to receive his response: "OMG! You’re TheFatLadySings???? I read all your stuff!" Of course, it could be that he just wanted my kidney.
I learned that before I can give a kidney, I have to lose about 30 lbs. And I need to provide Eric with two blood pressure readings two weeks in a row. I thought, ‘Oh, I’ll just start with the BP readings because that’s easy.’
Not!
First I tried to get them from one of my colleagues at work, an EMT. But every time I went to his office, he didn’t have his cuff. This went on for about three weeks. Then I started driving over to our local public health department where I have many nurse friends. I went about six times getting readings of 130 over 85 each time. I have always had low blood pressure, so this was a little bit alarming. They suggested a make a doctor’s appointment and have myself tested for hypertension. I set an appointment with m OB-GYN as it was time for a lovely pelvic anyhow and that way, I wouldn’t be charged for an extra appointment. Her earliest available opportunity was 6 weeks away. In the interim, I located a strange lump under my arm. The day of the appointment, she was called away to deliver a baby and I was scheduled for another appointment 4 weeks in the future. Again, I waited patiently and, the day of the appointment, a huge blizzard blew into New Mexico knocking out electric power to my community for the better part of three days.
I went to her office anyway and refused to leave until they agreed to see me immediately when the power was restored. They did. The lump turned out to be a lipid deposit (whew) and my blood pressure was 120 over 60...normal for me. After asking the Powers That Be, my doctor said she could do one free blood pressure check a week which did not resolve my impasse. It also turned out that a few of the nurses at the Public Health Office had been suspicious that their aging equipment was giving incorrect readings on larger clients. They asked me to write a letter to the head nurse, which I did. Hopefully, it will result in new equipment for them.
I called up a friend who works for a local FQHC primary care clinic. She is arranging for me to get my four blood pressure checks this month.
Now, onto the "larger" problem of losing 30 lbs. Needless to say, I’ve been trying to accomplish this impossible feat for 15 years. It’s not clear that I’m going to be more successful by setting as a reward the removal of a kidney.
I called up a friend who is a nutritionist and told her about my plan. My insurance won’t cover visits to a nutritionist unless I first gain another 100 lbs even though I’m officially obese. So she agreed to a payment arrangement I can handle. And then she put me on a vegan diet.
I also signed up for a yoga and vegetarian nutrition class being offered at our community college by the local Sikh community. I speak to my nutritionist a few times a week. She has given me many excellent recipes. I email my Sikh friends on a daily basis, getting help and support from them. I am pleased to report that I began my vegan adventure on December 20, the day before Channukah, and unlike previous solstices, I’ve actually lost three and a half pounds. (Usually, I gain five to seven.) This is despite cooking two feasts for friend, and a baking spree. I’ve been able to make both festive and mundane meals with a variety of vegan dishes and one meat dish for my family. I eat a little bit before cooking so I’m not tempted. I can make vegan challah that is comparable to my usual challah, vegan pumpkin pie, vegan latkes, and vegan bread pudding. I’ve learned to order satisfying vegan food in restaurants. I’ve not figured out a vegan brisket alternative, so I have to content myself with looking at one.
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I had approached TheFatLadySings about doing a diary for the Thursday Night Health Care Series, thinking I could write about one of several subjects, including the one we had settled on, living with a chronic illness. But in discussions leading up to the writing of the diary itself, she suggested that I write it on needing a kidney donor, thinking we might be able to find one on DKos, and after thinking about it, I said that it was a good idea. Several people read it and asked for information as to how to contact my transplant center, which is the University of Washington. (If you are also considering becoming a living kidney donor for me, call the Living Donor Program at the University of Washington Medical Center at (206) 598-3627. This is the first step in possibly becoming a donor. They'll take it from there. I need a kidney from someone with Type B or Type O blood; Type O can donate to anybody, and I'm a Type B. You'll need my name, too; it's River Curtis-Stanley. More potential donors are better than fewer.)
Like most (all?) of the Health Care Series, it disappeared off the charts faster than you can say "Sarah Palin scandal". And that, I thought, was the end of that. The fact that I need a kidney has been in my sig line on DKos for the better part of a year, and still people told me that they had no idea that I needed one. I had hoped that maybe someone would step forward and decide to become a donor, but I wasn’t about to hold my breath.
And then.
I got an email from TheFatLadySings. The first sentence was: "Hi River,
I submitted the donor form this morning."
I just started crying. I was sitting there at the computer with tears running down my cheeks. I could not believe this. One person who hadn’t inquired about how to become a donor was TheFatLadySings, and I had absolutely no idea that she was the right blood type or that she would even consider it. Not only was she considering it, but she’d already contacted UW, gotten the form, and sent it in! I called my husband at work. He started crying, too. I don’t know if anybody wondered why he was crying at his desk, but he had a good reason.
I felt absolutely overwhelmed. I couldn’t even write about it for a while, I was that overwhelmed. Try to imagine how it felt. Here was someone I’d only corresponded with online, had not met in person, hadn’t even talked with on the phone, and who was seriously considering donating a vital internal organ to me. It takes someone really amazing to do that, or even to consider it. And here she is getting tested.
If she’s compatible and decides to proceed, I’m going to want to head down to New Mexico and meet not only TheFatLadySings but her family. They should get a chance to find out for themselves who I am before I am a recipient of their family member’s body part, and to approve or disapprove of me to TFLS if they choose.
I already know we share a few things, at least, in common. We both bake challah, for one thing, though I still use eggs in mine. (It is quite popular at the monthly Democrats’ meetings on the months that we have dinner.) We were both committed Obama supporters and volunteers. We hold at least some of the same progressive values in common. Not only is my family ancestry, at least on my mother’s side, originally from the same religious background as that practiced by TheFatLadySings, but I have had enough Jewish influences in my life (study on my own, two Jewish stepfathers) to appreciate and understand the religious beliefs that have helped to lead her to undertaking the tests to become a donor.
There is much yet to be done with testing. I have had the HLA typing done, I think, since that’s probably some of what they drew 11 vials of blood from me for when I was approved for the transplant program, but that is yet to be done for TheFatLadySings. The blood pressure readings are only the beginning. As she mentions above, she’ll also be required to lose weight if she is going to be a possible donor, and I know from experience how difficult that is. Oddly enough, I am not required to lose weight. I talked with the nurse at the transplant program yesterday and found out that I had not, in fact, heard the answer incorrectly in the transplant introduction class when the subject of maximum BMI to be a transplant recipient came up. It is 38. That seems immensely high to me, and I don’t want to go anywhere near that number, but it is somewhat comforting to realize that I need not panic because my BMI has gone from 21 to 26.1 or so during the time I’ve been on peritoneal dialysis and it has done so because of the dextrose in the dialysate.
I spend time at the gym each week, except when we were snowed in and I couldn’t get there, because I want to be in the best shape possible to receive a transplant when The Call comes. But if I get one from TheFatLadySings or another living donor, I won’t wait anxiously for years, hoping each day or night to get The Call.
They can call you at any hour of the day or night, and no matter where you are and what you’re doing, they’ll tell you "We have a kidney for you. Be here in two hours." (I suppose they might allot more time – possibly as late as the next day – if I were out of state or someplace else that I had to catch a plane back from.) Each day you hope, and each day you tell yourself that The Call is not going to come that day, so you don’t get up too much hope, but you hope anyway. The longer you’re on the list, the fainter that hope gets, yet the stronger it gets. Some people get The Call within a couple of months of getting on the list. Some people wait for many years. It really depends on how compatible a given cadaver kidney is with someone on the list. If it’s a perfect match, that person is going to get the call, even if he’s been on the list less than 60 days (it happened to a former dialysis patient I know online, who is blood type A).
But with a living donor, the surgery is scheduled in advance and you know when that will be. You and your donor can decide together the best possible time to do it. Chances are that I’ll be available whenever it is best for my donor, because there is essentially nothing I wouldn’t put off or miss in order to get a kidney. I think you’d find that sentiment pretty much universal among kidney patients!
A living donor kidney also has a greater chance of lasting longer and a greater chance of working right away as soon as it is, er, installed. For the recipient, it is much to be preferred.
Whether TheFatLadySings is compatible or not, I am grateful, humbled, honored, and still find difficulty putting into words fully how much this means to me. Quite simply, it means everything. The toast l’chaim has new meaning to me now.
L’chaim, TheFatLadySings. Over here in the woods of western Washington, my partner and I raise a glass of good well water to you.
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Thank you for your beautiful words, Kitsap, although I feel I don’t deserve them because, aside from making at least twelve fruitless attempts to get blood pressure readings and eating some sprouts, I haven’t accomplished much. I’m feeling useless and ineffective.
Tomorrow morning I’ll call my friend at the clinic and set up the four appointments for the readings. Once I have finished them, assuming the high readings were a fluke caused by poor equipment and they are now normal, we can move on to the physical exam and blood work.
I have a question. The last time I had extensive lab work done, the bill prior to my insurance was over $1,000. I will check to see if it is covered by my insurance but frankly, I’d be surprised. Is the physical covered by yours?