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.