New Year's Eve 2011

We went to an early dinner at Olive Garden tonight. No big party as in years past. Last year we went to the New Year's party at the Embassy Suites hotel in Rogers. Year before that we went on a cruise out of Galveston. This is the first "quiet" year since we've been married. No champagne. But I did stop by Harp's grocery yesterday and picked up some petit fours and mini cheesecakes, and a bottle of gingerale. Gotta have SOMETHING bubbly for the new year! Actually, I had a bellini with dinner; it has some asti in it, although not much. I can't drink alcohol anymore; it makes me dreadfully sick. I guess since my kidney doesn't work well any more, the alcohol doesn't get filtered out of my system, so it stays and stays. At Christmas I had a glass of champagne at the quilter's dinner, and felt really sick the next day. Won't do that again. Hope the bellini doesn't affect me that way.



Ramiro's goal for the new year is to lose 20 lbs. I told him my goal for 2012 is just to survive. I'm not on dialysis yet, and of course I wish that my kidney would keep on working so I didn't need dialysis, but I also recognize that if my kidney works let's say for 3 or 4 more years, then finally quits, I may not be in the best position to get a transplant then. Right now I'm told I'm a good candidate because I'm otherwise in good health, and I'm "young," but 3 or 4 years down the road my health may be compromised by the poorly functioning kidney, to say nothing of the fact that I'll be 3 or 4 years older, and not considered the best choice to get a prime kidney. So in a way, it's best to get a transplant sooner rather than later.

May God watch over us this coming year; we will face many challenges and we will need every resource of strength that we can muster. I pray for Ramiro to remain well and healthy. As I've said before, he is the only thing between me and the total darkness that would surround me without him. I cannot imagine trying to face this coming year without him. Not only is taking complete care of me and the house and the cars and the pets, but he's just so solid and well centered. He's what keeps me centered at this time. Otherwise I'd go into a deep funk, I'm sure.

Mailer Boxes

Wed., Dec. 28, Ramiro and I were sitting in the breakfast room after I got home from work. We saw the UPS truck drive up and wondered if we were getting a late Christmas present. I opened it to find that UAMS had sent me a pack of 4 mailer boxes. Each box contains a small styrofoam container about the size of a cigarette pack, and inside it there is a single test tube. I need to find out the details about using these, but they are for the purpose of sending blood samples to UAMS on a monthly basis so that they can have a fresh sample on hand to be used for compatibility testing in the event a kidney becomes available. I don't know whether I go to the blood bank, the doctor's office, or the lab to get this blood drawn. But the boxes are all set up for Fed Ex shipping--prepaid labels, envelopes, etc. I thought I wasn't supposed to get these until I was on the transplant list, but maybe someone has jumped the gun. I need to find out more.

The old year is slipping away, and the new year has so many uncertainties for me. When will I absolutely need dialysis? Will I get a transplant? Live donor? Cadaver? Or will I still be waiting for one a year from now? Will I be alive a year from now? There are so many things for me to take care soon. We need to refinance the mortgage. We need to get wills drawn up. I need to get a living will drawn up. We need to get these things done before I get too sick to move about. I already tire very easily. Some mornings I have to take a little rest after I shower and dry my hair because that's enough to tire me out. Most days I sit on the couch right after dinner until bedtime, doing nothing more strenuous than reading or watching TV because I'm just too tired to do anything else. I used to stay up past midnight working on my craft projects--sewing, quilting, whatever, then getting up at 7 a.m. for a full day of work. Now I go to bed at 11 p.m. and sleep straight through to 8 a.m. I can't imagine staying up any later, and the mornings I've had to get up earlier have really taken a toll on my by the end of the day.

But every morning I wake up glad to be alive, glad if I'm not queasy, glad I'm not retaining fluids, glad to have a good appetite. Some mornings I'm queasy and don't feel so good, but these have been fairly infrequent. Mostly it's too much protein that makes me feel not good, so I watch what I eat, focusing mostly on fruits, veggies, carbs and very little meat or cheese. Breakfast is cereal or bread. I made granola as christmas gifts for the quilters here, and I have a large sack of it left over for me. It's Jacque Wackerbarth Forrest's original recipe from the 60's (when she and Jay were living in San Francisco because he was in the Navy). I still have the original post card on which she wrote the recipe. Anyway, I have granola with a little bit of milk and some fruit for breakfast, and coffee. Lunch is bread and a low sodium slice of cheese, with an orange or some other fruit, then dinner is whatever I fix for Ramiro and me, but I have a very small portion of the meat if any at all. Last night I was feeling pretty queasy (I'd had meatloaf for lunch with the quilters at Dixie Cafe), so all I had was half a grapefruit and some graham crackers. Later in the evening I had hot Mexican chocolate and a piece of semita (Mexican sweet bread). It was very satisfying and the hot cocoa made me feel warm and sleepy.

I am at work right now, but there's not much to do. I may call it an early day. Happy New Year!

Christmas Eve

I've been too busy to post because there's been a lot of stuff going on. First of all, I had my heart stress test done at UAMS on December 9. The drugs they gave me to slow my heart back down after the test made me feel really sick, and I felt awful the whole 4-hour drive home--I was drowsy and nauseated, felt like I couldn't focus my eyes, and I couldn't urinate although my bladder was full. My mouth was so dry I could barely eat a graham cracker. I've since been told my stress test was normal, thank God. They also did a bone density test, and I've been told that there's the potential for osteoporosis later on. They didn't use the term osteopenia, but I think that's what it would be called now. On December 13 we traveled to Dallas so that I could meet with the transplant team at Dallas Transplant Institute (DTI Baylor) on Dec. 14. The meeting with the transplant group lasted most of the day. We stayed at a hotel in Lewisville, then drove on the morning of the 14th to the Regal Row area, where the Transplant Inst. office and clinic are located. The traffic was horrendous, especially since it was raining really hard. It took us about 40 minutes to drive less than 10 miles. I had another EKG, a renal sonogram, a TB skin test, lots of blood work. I met with the social worker. She was a godsend because she called Express Scripts, my insurance company's pharmacy, to find out what my copays would be on the immunosuppressive drugs I would need after a transplant. There is a huge concern that a recipient may not be able to pay for the drugs and thereby lose the transplant. One of the drugs, called Valcyte, costs $1400 a month without insurance, and that's just one of the drugs; a transplant recipient may be on as many as 10 drugs or more, especially in the initial stage after the transplant. Thank God for my health insurance--my copay on the $1400 drug will be $25. 

I met with the DTI nephrologist, a Dr. Melton. He was not as encouraging as Dr. Abulezz from UAMS. Melton said that there was no preference given to a former donor, and that the only way to get that preference would be for all the transplant centers in the region to agree to it. Furthermore, he also said that he would recommend that I accept an "expanded criteria" kidney (a grade B kidney, not the best). I met later with Helena Roman, the transplant coordinator assigned to me, and she said that former donors ARE given very high priority, so I don't know now whether Melton was misinformed or whether there is some miscommunication. Another thing I didn't like was that after I got through with all the physical tests I was told to come back at 3 p.m. for the educational seminar. It was only 11:30 a.m., and I didn't want to wait that long, so I asked if there was an earlier seminar. I was told that I was assigned to the 3 p.m. seminar because it was conducted in Spanish, and I was assigned to it on the basis of my last name! They assumed that anyone with a Spanish last name would not speak English. What other assumptions have they made about me based on my ethnicity? Wonder if Melton's recommendation to take a grade B kidney is colored by their view of ethnicity? How would I ever know?

On the donor front--Debbie, Juanita, and Janet have been ruled out as potential donors. Debbie because she had breast cancer this summer, Juanita because she has a lupus-like autoimmune disease that can attack her kidneys, and Janet because she is pre-diabetic. That leaves only my sister in law Janie (Arnold's wife) to be tested. She's talking to the UAMS folks, and has answered their questionnaire satisfactorily enough to warrant their telling her to go ahead and get tested for blood type. Turns out she's A+, and I'm type O, which I thought meant flat out that we would not be compatible. But UAMS says that I need to be tested for the presence of anti-A antigens. If I do NOT have those antigens, then I could accept a kidney from her, assuming that she is physically well enough to donate. The only way to find out if I have anti-A antigens is with a sophisticated blood test which the blood banks in NW Arkansas are not equipped to perform. Fadelle Powell, the UAMS transplant coordinator, is trying to find out whether the test can be done on blood collected here and shipped to UAMS or whether the test has to be done on "live cells," meaning blood that is tested right after it is drawn. If that's the case, I will need to travel to Little Rock to have the test done at the UAMS blood bank. I should find out next week whether I'll have to go down there.

Baylor DTI has rescheduled the second half of my interview to January 16. It was initially scheduled for Jan. 9.  This interview/seminar will be at the Baylor Hospital facilities in east Dallas, close to where I used to live on Sycamore St.  I am so thankful that we are familiar enough with the city to get around easily. I can't imagine trying to do this in a strange city, but we may have to do it if I go through the listing process at Barnes (St. Louis, MO).

My peritoneal dialysis catheter implantation surgery has been scheduled for Jan. 18 at Washington Regional Hospital. It will be embedded completely under the skin, and it'll sit there for at least a month before it can be used. Right now I'm hanging on the verge of needing dialysis; hope I can hang on until after mid February, when the catheter will be ready for use. Once I'm ready to start dialysis the doctor will make a minor incision into the flap of skin covering the catheter and pop it out.

I've been feeling pretty good the last few days. I've gotten rather tired on the days I've worked the whole day, but otherwise not too bad. I get a bad taste in my mouth occasionally, and I've had that for about 3 months. I'd started getting nauseated, and then I noticed that it happened on days when I ate meat/protetin more than once a day. So now I usually limit my meat intake to once a day. I have cereal or bread for breakfast, pasta or a cheese slice for lunch with fruit and/or veggies, and then a regular dinner with some meat, less than 3 ounces. I've lost several lbs. I used to weigh 105 lbs in my skin; last week I weighed 103 fully dressed at the doctor's office, so I'm assuming I weigh less than 100 lbs in my skin.

So here I sit on Christmas eve, facing a year of uncertainty. When will I need dialysis? Will I get a transplant? How is that going to affect me? Us? Will I continue to be able to work? I'd like to see the completion of the Batesville project, and I know that my boss wants me to see it through. I may have to work at home some. I figure that Ramiro can go into the office to pick up the submittals that I need to review, and I can do the rest via computer. Six months after his transplant my dad was starting to work again, so I know it's possible, and my work is less physcially demanding than his was. I want to stay positive and hopeful, but there are days when I feel weepy and sad, no matter how well things are going. Ramiro says that I should not cry since there are so many people working hard to help me. I've told him that I can't help it, that there are times when the tears and sadness just wash over me and I cannot stave them off. Truthfully, sometimes I don't know why I'm crying; I know I sort of feel sorry for myself, and I worry about the future, I worry about dying and leaving Ramiro alone. I worry about not being able to take care of myself and placing even more demands on him. I worry about money. I've always been so healthy and lived a pain-free life and I worry that it's ending, and that I'll feel sickly and bad the rest of my life. And of course I mull over all the issues about a living donor--am I worth another person's sacrifice? I've always had a rather high opinion of myself, and felt that I was a valuable asset anywhere I was. But it's quite another to think that my life is worth the physical/emotional sacrifice made by another to give me a kidney.

In past times, kidney disease was a kiss of death, so one thing I think about is that perhaps this is simply my signal to check out, and not undertake such heroic measures as dialysis and transplantation to extend a life that by ordinary measures would be extinguished now. Of course dialysis is within my economic/educational reach, and many would not consider it a heroic measure, would say that it is not much more than taking medication for another condition. But a transplant is surely a heroic measure by anyone's definition. And if I get a transplant, I would surely feel obligated to undertake every measure possible after that to keep it going and keep it working. And so it goes.

But it is Christmas eve, and I'll let this train of thought go for now. God bless us, everyone, and especially Ramiro who is the only person standing between me and the darkness.

First Procrit Shot

As part of the application process for the Dallas Transplant Institute, I collected a 24 hour urine sample and gave a blood sample on Monday, November 28. I got a call the following day from my nephrologist's office, saying that I needed to come in ASAP for my first ProCrit shot. When I went to the nephrologist on November 7, I was given some forms to sign so they could process the insurance/medicare application for me to get these shots, saying I'd be ready to start the treatment in December. However, my blood count has fallen so slow that the doctor didn't want me to wait that long.

Procrit is a synthetic form of the hormone erythropoietin, which is secreted by healthy kidneys and signals the bone marrow to make new blood cells. In renal disease, the kidneys make little or no erythropoietin, so blood count falls to dangerous levels. I was told my hemoglobin was down to 7.5, a level that would ordinarily require a blood transfusion. However, a transfusion would create antibodies in my system, which would make it harder to get a match in a kidney transplant.

So, I got the first shot today, and I'll get a second one on December 15. The nurse said I should feel some improvement between now and then. I've been feeling increasingly weak and cold. It doesn't help that we've had temps at night as low as 17-18 degrees. I've taken to sleeping in a sweat suit; it takes that much to keep me comfortable. At night, while watching TV, I cover myself with a fleece "snuggie" and then put a quilt over my feet.

I had a call from my friend Linda Rose on Sunday. Strangely, I found the call unsettling rather than comforting. When her husband died about 6 years ago, she went through a prolonged bout of grieving. Even two years ago, when she and Janet McKinnon and I got together for a spa weekend, Linda was still going on and on about losing Dee. Both Janet and I felt that she should have gotten over the raw parts of her grief by then; neither of us liked Dee very much for the way he treated Linda, so it was extra burden to listen to her pine for somebody that mistreated her. Anyway, Linda didn't offer much in the way of emotional support, merely suggesting that I try journaling as a way of getting past some of the emotional issues I'm dealing with. She said that she found it very healing in getting over Dee; well, maybe you can journal your way out of grief, but you can't journal your way to improved kidney function! In parting she added that she would send a lot of good thoughts my way, that if she prayed, she would pray for me, but that she doesn't pray any more.  I know that she was raised as a Roman Catholic; the sister who lives with Linda was a nun for over 25 years; Dee belonged to Church of Christ and made Linda take a lot of classes in that faith, so it's not as if she has not had a life of faith before. Makes me wonder what's happened to make her stop praying.

Thanksgiving Day 2011

We went to UAMS last week, and had our initial meeting with the Transplant Team. The doctor is Dr. Abulezz, a tall kindly man in his late 50's, I would guess. He asked a lot of questions about my health, listened to my heart, lungs, etc., ordered a bunch of tests to be done before I left the facility, and some to be done at some time in the future. The really good thing he said is that as a prior kidney donor, I will be given high priority on the transplant list. The other good thing he said is that he recommended AGAINST my agreeing to take an "extended criteria" kidney. An extended criteria kidney is like a grade B kidney; the best is a "standard criteria," and he said I should agree only to take the standard criteria. This nurse who collected the consent forms expressed surprise that I had declined consideration for an extended criteria kidney. I told her that was because of Dr. Abulezz's recommendation, and she said that the extended criteria kidneys were always offered to patients over 40. The gist of this is that I feel good about Dr. Abulezz's overall assessment of my health and chances for a successful transplant. They don't give grade A kidneys to patients who are not themselves grade A!

In addition to Dr. Abulezz, we also met with a number of other transplant team members. The insurance coordinator had reviewed my private (Aetna) insurance and Medicare, and concluded that insurance-wise I am "good to go." What a relief! The social worker asked questions about hobbies, exercise, etc. The dietitian didn't have much to recommend, since my weight is at a good level. I asked some questions about a dialysis diet, curbing protein, curbing potassium and phosphorus, and she said that since my personal nephrologist had not recommended any dietary changes yet, it was because I must still have enough kidney function not to need it. My next appointment with the nephro is Dec. 15; I'll know more then.

The visit to UAMS took all day Wednesday, so we waited til Thursday a.m. to drive to Texas. We got as far as Waco that night. Friday morning we drove to San Antonio. Our friends Glenn, Engracie, and their daughter Audra came in later, as did my sister and her husband. We all went out to eat at Pico de Gallo. Great Mexican food! Saturday we went to the Mercado, and had a late breakfast at Mi Tierra. Then we walked all around downtown and went to the Riverwalk Mall. Later that day Ramiro's brother, Ruben, and his wife Mary joined our group, as did Ramiro's nephew Mark, Mark's wife Kourtney, and Mark's daughter Tatum. We all went out to eat at La Margarita, except that Mark and his wife had to leave before we were seated, since Tatum was getting fussy and hungry as it was getting quite late before we were seated.

We left Sunday morning and drove to Austin, where we (Ramiro, Juanita, Bill, and I) met my nephew Phillip and his partner Allen for breakfast at the Driskill Hotel. Very elegant! Then we went to see the furnished model of a condo that Phillip and Allen are buying. It is in the area of the old Austin airport. Ramiro and I looked at the condo and are also interested in buying something like it if we ever sell our Missouri lake house. Perhaps next year!

After that, we drove on to Dallas, where we met my friend Bennett Stokes for dinner at Mughlai Indian Restaurant. It was delicious! Bennett looks the same as ever, maybe a little grayer, but that's all. He's 78, but doesn't look it. Ramiro and I concluded that he'll be one of those people that live to be well into their 100's. Monday morning the weather turned rotten--cold, rainy, gray. We drove in the drizzle all the way to Fayetteville. Ramiro dropped me off at the office, where I knew I would have a pile of work waiting for me.

This is the first thanksgiving in over 25 years that I won't have any company. Glenn and Engracie are staying in Texas because Engracie's mom is rather broken up over the recent death of her mother. I'm glad we saw them in San Antonio. We were supposed to have dinner with my sister and her husband at their house, but last Monday she called to say that she had had a stomach bug and was afraid that she "would contaminate the food" if she cooked. She said that she was so afraid for my health, that she thought it was best not to cook. Then she added that she was prepared to cook, and that if I wanted to risk my health, she would do so. Well, what fool would accept that kind of invitation? The real truth is that, like a lot of other times, she changed her mind about what she wanted to do. She had previously mentioned that she wanted to run in the Turkey Trot in Rogers on Thanksgiving day, and it was obvious to me that her "concern" for my health was simply a way of getting out of the cooking without seeming to have changed her mind. A day later she asked if I had made dinner reservation for the 4 of us somewhere. I texted back that Ramiro and I were going to do our own dinner. Her reply:  "Meaning what?" I texted back that her fear that she was so contagious worried me that I could get sick being around her, and that since restaurant food is so high in sodium, my best bet was to eat at home. I didn't hear from her again until this a.m., when she texted "Happy Thanksgiving. I am thankful for my family."
I miss Glenn, Engracie, and Audra. When they come, the house is loud, crowded, busy, messy, and fun. We laugh a lot, and Glenn takes pictures of everything that we do, from cooking to eating to goofing off. Glenn always carves the turkey, Engracie helps with the cooking, and Audra gets into everything. This will be a quiet day.  I am thankful for many things. I am thankful for my husband, for the friends who have offered to be tested as donors, for the people who are praying for me. I am thankful that I feel as well as I do. I am thankful for a beautiful day, and a beautiful home, lots of food, good clothes, a job I enjoy. I know that it would really tire me out to have to entertain a lot of people this Thanksgiving, but I miss the fun of having a group to cook for and eat with.

Dialysis is Imminent

November 7 I had an appointment with Dr. Moulton, my nehrologist. My friend Debbie Phelan and my husband both went with me to the doctor. The outcome of this visit is that he recommended I make an appointment with the surgeon for the implantation of a peritoneal dialysis catheter. I asked if I could wait until after the Christmas holidays, and he agreed. I go back to the doctor the first week in December, at which time he'll schedule the surgery.  The cath needs to be in place at least 4 weeks before dialysis can start, so I imagine I'm looking at starting dialysis sometime in February. I also asked him about getting on the transplant list at hospitals other than UAMS; he recommended the Dallas Transplant Institute (DTI), and the hospital in St. Louis, where he trained. I have the paperwork ready to fax to DTI; the paperwork for St. Louis likely won't be mailed until after I have been contacted by DTI.

This morning at breakfast my friend Debbie told me that she and her husband had talked about it, and that she is ready to donate a kidney to me. Needless to say, it brought immediate tears to my eyes. As a kidney donor myself, I understand the sacrifice this means, and I am absolutely blown away by the idea that someone not related by blood or marriage would even consider doing this for me. I hope I don't have to take advantage of this offer; perhaps there will be a donor somewhere else.  I am crying as I write this, so I'll stop for now. But I love her more than any words can express.

Dialysis Seminar; Transplant Team Call

Ramiro and I attended a dialysis seminar on Oct. 27; tomorrow (Nov. 1) we are visiting the dialysis center to get a look at the various machines that are involved. Not looking forward to it; it's just a grim reminder that I'm at a stage I hoped I'd never reach. I've been feeling really well lately; well enough so that I can almost forget that there's anything wrong with me.

But today, Oct. 31, I got a jolting reminder about where I'm headed--I got a call from the University of Arkansas Medical School (UAMS) transplant team. My initial assessment appointment is scheduled for Nov. 16 in Little Rock. The morning will involve me and Ramiro; the afternoon will be for me to meet with all the physicians for a complete medical assessment.

I'll post again after tomorrow's visit to the dialysis center.

Every Tomorrow Has Two Handles

Tuesday, Oct. 18.  Today's Cryptoquip puzzle in the newspaper was "Every tomorrow has two handles. You can grasp it by the handle of anxiety, or you can grasp it by the handle of faith."  This really struck a chord with me, and I will attempt to reach for the handle of faith, rather than the handle of anxiety. I feel good today, and I want to have faith that tomorrow will be as good.

I spoke to my boss yesterday.Or rather, I tried to speak to him about quitting. He was all consumed by the fact that he has broken his leg and will need surgery. Eventually, he asked about me, and when I started to address the issue of hiring my replacement, he simply said "I don't think we need to do anything right now.  Let's wait to see what happens. This (dialysis) might never happen." He may be more in denial than I am! But I've come around to his way of thinking. Right now I feel fine, although I do tire more easily. But I am clearly able to work, and having a job to go to serves to keep me motivated and "up" in spirits. I'm afraid that if I stay home I'll start to simply feel sorry for myself. So for now, nothing has changed work wise.

We've taken the house off the market upon our realization that the market is going nowhere. It may be a couple of years before there is a demand for houses in our price range. So, we are talking to the bank and the credit union about refinancing to get a better rate. Might as well take advantage of that, and save a little money in the long run.  Still hoping to sell the lake house; maybe by next spring. If so, we could then buy a condo or cottage in Texas where we could spend the winter months when it is so cold here. Our first freeze is about to descend upon us; we expect temps in the mid 20's later this week. We need warmer temperatures in order to be able to walk outdoors for exercise.

Friday, Oct. 14, 2011

I went to the office today, hoping to speak with my boss about quitting my job. But he broke his leg this week, and won't be in until next week.

I am the leader of a group of quilters that meets once a month. We met last night, and I told them about my situation. We all cried together, and one old (94 years old) lady asked me "Do you trust the Lord with this?" I told her that, to be honest, my faith was having a difficult time with this. Another lady told me that tears speak to God, and that I should feel free to express my feelings like that. Well, I have been. I still cry often, usually after I tell someone new about it. I feel sorry for myself. 

I am angry at God. Ramiro and I have been talking about this. He and I say prayers together every night, and at every meal, and each of those prayers asks God to keep us in good health the rest of our lives. But this prayer has not been answered. So I ask myself, if God didn't listen to a simple request like keeping us in good health, why would I think that he would listen to us asking for the miracle that I need now? I'm having a hard time praying myself, and I don't see much point in asking someone to pray for me; what would be the use? But I do thank people when they tell me that I am in their prayers.

I spoke to Pam, my pastor, tonight, and among other things I told her about being angry at God. She said to go ahead, that I didn't have to worry about not being able to pray right now. She said that part of being a member of a community of faith is that other people would be praying for me.

The kindness that everyone has expressed is very touching, and I feel surrounded by people who love me. I cannot imagine going through this if I didn't have Ramiro, Debbie, my quilter friends, my family to see me through this. I told Debbie the other night that if something were to happen to Ramiro, I would "pull the plug" on myself, because I could not go on alone. She immediately told me that if something happened to Ramiro, I would just move in with her and Mike, and they would see me through it. So, offers like that sustain me. I hope I never have to take advantage of that offer.

Not much else to say. I feel OK. In fact, if I never feel any worse than this, I could live this way without any qualms. I have a reasonable energy level, I don't have any stomach problems, I'm sleeping better now that I'm getting over the shock. So I need to enjoy this time, as I will look back on it at some point as "the good old days" before dialysis. Ramiro asked me tonight if I would have a lot of pain later on. I think he's concerned about seeing me in pain and his not being able to do anything about it. Fortunately, pain is not a factor in kidney failure as I understand it. I think he was reassured about learning that.  I've asked him if he's afraid of what's happening, and he said yes, but what he's afraid of is being able to help  me, and whether he'll know what to do. I don't worry about that, because he is a natural caregiver, and seems to know instinctively how to make me more comfortable, no matter what's wrong, like when I had the gall bladder surgery last year.

In an effort to make the most of my freedom now we went to the Springdale craft show this afternoon. We went to the Rogers Craft show yesterday, and hope to make it to the big War Eagle Mill craft show this weekend. We don't buy anything, but it is wonderful to be outside in gorgeous fall weather, and be filled with the sights and sounds of happy people all around us. Now I look at everyone and ask myself--are they on dialysis? Are they like me. But of course I can't tell. And then I wonder whether being on dialysis would even permit somene to go to a place like the craft fair at all? Are there limits of strength, etc., that will prevent that?

I don't know the answer to a lot of questions. Heck, I don't even know all the questions.

Wed., Oct. 12, 2011

I spent yesterday mostly moping around and crying. I can't help it. I sent out a bunch of emails telling my family and some friends about my diagnosis. Their replies are touching and loving, but this only made me cry even more. My sister is in town, and wanted to stop by to see us, but I was not too keen on the idea since I looked a mess, eyes swollen from crying, no makeup, etc.  But she did stop by, and I cried even more, but she stayed several hours, and we talked about a lot of things besides my situation, so eventually I realized that I was really hungry. I had not eaten since breakfast, as I'd had no appetite at lunch. So my sister, my husband and I went to Posta Plata, a new Mexican restaurant in Fayetteville. Ordinarily, my husband and I shy away from Mexican restaurants in this part of the world because the food tastes awful, not at all what we consider real Mexican food. But Posta Plata surprised us all. First of all, the restaurant is very nicely appointed, not the usually kitschy pinatas and loud mariachi music. The decor is black and white, understated, elegant even. The food was wonderful! Or was it that I was really hungry? But Ramiro and my sister agreed that the food was excellent. We stopped to talk to Chef Omar, who said he was from Mexico City by way of Morelos (close to Monterrey, Mex.). When we told him our grandparents were from Monterrey, he said "oh, then you appreciate the true flavors of Mexico."

Today Ramiro and I have been googling for information about the various forms of dialysis. I know that Ramiro is having to deal with how best to help me, and he's asked who determines which treatment option is best--do we decide? the doctors? the treatment center? What are the factors in favor of this option or the next?  We have a lot of questions. Hopefully the seminar on Oct. 27 will offer some answers. I'm leaning toward peritoneal dialysis, just so I won't have to get hooked up to a machine for 4 hours every other day; it seems like that would present the greatest problems for a more natural lifestyle, but I don't know whether peritoneal diaysis is a viable option for me. From what I've been able to gather, being small in size/weight is a plus factor in being able to do the peritoneal dialysis, with larger patients having to use hemodialysis (the big machine type), but I'm so small that I may not have a sufficiently large body cavity to accomodate the 1.5 liters of fluid that have to be pumped in.

I weighed myself this morning and I weigh 100 lbs. I've lost about 5 lbs in the last 2 months. I think (hope) it's because I've really been watching what I eat with respect to sodium and fat; gave up all alcohol, too (except I had a beer last night with dinner). I hope the weight loss isn't a sign of some other problem yet undetected. I remember that my dad lost a lot of weight when he was first diagnosed with renal failure, but he was practically at death's door by the time he was diagnosed. Nothing I've read so far indicates that weight loss is a sign of Stage 4.

Didn't go in to work today; I've emailed my boss that I want to talk to him about quitting and his finding someone to take my place. I don't know when I start dialysis, nor how it will affect, but the last thing I need is the added stress of trying to get my work done while I'm coping with the information, medical appointments, etc.  At some point it will be necessary to get either a port put into my arm for hemodialysis, or have a catheter installed into my abdomen for the peritoneal dialsys. That entails a hospital stay of at least one night. Those procedures have to be done at least a month before the dialysis begins. All this informaton is what I've been able to glean from the internet; I'll know more after the seminar, and more about my own condition after Nov. 10, my next doctor's appointment.

In another post I'll address some spiritual issues that Ramiro and I talked about this morning, and how I'm having trouble praying for myself at this point.

October 10, 2011



Wedding Anniversary in 2009



I found out today that my kidney function is so reduced that I need to consider dialysis and transplantation. I am devastated by this news, although not surprised. I have only one kidney, and I've known for months that my kidney function was declining. My nephrologist and internist have been tracking my function, and the rate of decline took a steep downward step starting about 3 months ago.  At the end of July I had a kidney biopsy, which showed damage from high blood pressure and athersclerosis (hardening of the arteries).

I am writing this blog to have a place to express my feelings, to rant and rave at the unfairness of it all, and to have a place to collect my thoughts, keep a list of things I need/want to do (my bucket list), and to keep a record of what happens along the way. 

A little history may be in order. In 1972, my father was diagnosed with terminal renal failure. We were told that he had less than a week to live unless we could somehow come up with at least $15,000 to pay for dialysis. I was a graduate student at the University of Texas at that time, and I had a hard time rubbing 2 dimes together; $15,000 might as well have been $15 million. I am the oldest of 4 children, and I felt compelled to try to save my dad. But I was at a total loss about how to come up with so much money. At that time, Medicare did not cover the cost of dialysis, although Congress was already working on a bill to cover that.

Fortunately, a volunteer at the hospital was able to determine that my dad's insurance policy was still in effect, and got a commitment from the insurer to pay for the dialysis.  My dad underwent hemodialysis at home for about a year, at which point he was strong enough for a transplant. I donated my left kidney to him in September 1973. He quickly regained his strength and vitality, and once again began planning for the future. He died less than 6 months later; the kidney was working fine until the last, but he suffered a brain hemorrhage that killed him in his sleep on March 7, 1974.  At his funeral, I had a weird sensation knowing that a physical part of me was going into the grave with him, that part of me had died.

I've lived a full and normal life all these years with only one kidney. I was married to Richard Wackerbarth from 1967 to 1977, including the time of the transplant. We divorced in 1977 and I remained unmarried until 1997, when I married Ramiro DeLa Fuente. I practiced environmental law in Dallas and Houston from 1977 to 2005, at which time Ramiro and I moved to Arkansas to retire. We didn't stay retired, however, and both of us went to work in Fayetteville, AR. Ramiro retired again in 2008; I'm still working as of this writing, but I can see that I will likely need to quit, either because my health won't permit it, or because the schedule of dialysis will interfere with it. Even if I can work a schedule around it, I won't want to work in an office on the days that I don't do dialysis--at this point, I want to spend every moment that I can with my husband, even if we're not doing anything more exciting that just sitting in the same room reading the newspaper or watching the golfers outside our backyard.