Not Handling It Well

Ever since I began receiving completed donor questionnaire's from my family members I have begun to stress out. I have noticed that I have less and less patience generally. I am more worried about details at work. More frustrated with my colleagues. More irritated with fellow drivers. Also, I have been extremely unmotivated to go to the gym. I haven't gone this week at all. It's like that's the thing I sacrifice so I can go home and relax sooner. I have other excuses too...things get in the way. For example, Monday was a holiday and I tend to be less interested in going to the gym on holidays. You know, the routine of work keeps me going to the gym and when the routine breaks, so do my workout routines. I'm feeling particularly fat and gross right now. I'm having my period right now, too, and that makes things worse. I get more emotional and tired from that sometimes.

Here's the thing about the donors. Five people have completed the questionnaire. The ages of these people are appx: 39, 42, 61, 63 and 64. So far, the transplant office has only contacted the 39 year old. She's my cousin on my father's side. I'm concerned that the others are either not in good enough medical condition or they are too old. Honestly, the initial response to my transplant news seemed more positive. Now that it's down to the brass tacks, if you know what I mean, those people aren't coming through for me. I thought there would be more possible donors -- and more that were younger. I thought I might actually hear from these people -- these *family* members. But nobody has contacted me. I know I'm not the best relative, but I thought family always came through for you. I'm not so good at sending greeting cards at the holidays, but hat's because I don't celebrate them. I'm not a religious person -- in fact, I don't even believe in god. But they don't send me b-day cards either and we don't see each other but maybe once a year around Christmas.

I wonder what it will take for people to really step up and consider donating. What about my so-called friends? They don't even check in with me to say hello. I guess I'm just wondering who my friends really are. I always thought I had a lot of friends, but right now I am not sure at all. Even my closest friends in another country are not being all that cool. The woman hasn't contacted me once since the "news." My mother suggested I send her an email to get the ball rolling again, but I'm stuck on this. I guess it's just so disappointing to me I don't want to do anything else. Maybe I want to hang onto the irritation for a little while longer.

I wonder what I'll do if my cousin isn't a match. She's convinced that she is, but there is a good chance she will not be. I should just begin asking friends straight up whether or not they would considering donating. if she's not a match, I don't want to waste any time getting more people to fill out the form. As for my work friend, I think she changed her mind about completing the form. She was pretty darn sure, but when it came down to having the form in hand, something changed. Do you know how that makes me feel?

I'm just so grateful that my cousin is willing to be tested. It only takes one person and I hope with all my heart that she'll be a match.

Possible Donors

I have received donor questionnaires from my sister, my uncle (dad's brother) and his wife, and their daughter/my cousin. My aunt (mother's sister) is sending hers, too. I may get one from my mother and from a friend at work, too. Thus far none of my other friends have volunteered to be tested. I'm not sure what to make of it. I expected more family members to volunteer, but I guess some is better than none. I suppose if there is any trouble finding a match, more will come forward. When death is a possability, they will motivate people. I'd wished to hear more from my friends, but I guess they don't feel comfortable enough. Sometimes I'd like to just hold up inside the house and isolate myself from everyone. That's how I feel today.

Tired

I'm tired of being strong and I'm tired of acting like this isn't a big deal. I'm tired of feeling left out. I'm tired of asking and not being asked in return. I'm tired of handling the details. I'm tired of waiting for calls. I'm tired of being responsible. I'm tired of being nice. I'm tired of being happy. I'm tired of understanding. I'm tired of eating right. I'm tired of exercising. I'm tired of "friends" (I'm not tired of friends, however.) I'm tired of grumpy people. I'm tired of the new job and the people with whom I work.

Still Making Urine?

I just think this is the funniest question. A couple of medical people asked me that when I was going through my transplant evaluation. Are you still making urine? I think about it nearly every time I am peeing. Wow, you really start to appreciate the strangest things when you're faced with a serious illness. I AM still making urine and I'm damn happy about it.

Today I have to have a cardiac stress test. I am not allowed to eat or drink anything 4 hours before the appointment. This is difficult for me, but since I ate a late breakfast, I thought I'd be okay. However, I'm started to get some heartburn. Drinking a lot of water usually helps me through the heartburn, but I'm not allowed to drink anything. I've been able to fend it off for the most part so far. I hope I can last another 3 hours.

My mother has type O blood which has the genotype OO. I just found out my sister also has type O blood. I have type B. That means my father had to have had type B blood with the genotype BO in order to pass on the O to my sister. Good to know. I hope she is well enough to donate to me. My husband is going in today to get blood typed, too. Maybe he'll be a match. I know he's healthy enough to give me a kidney. I'll keep you posted.

Not All Good Today

Today I'm having an emotional day. I don't know why it hits me sometimes and not others. Luckily I'm happy most of the time -- even if I am complaining about one thing or another. I see bad stuff, but I don't usually let it ruin my mood.

I don't particularly want to go to this get together with "friends" tonight. I chatted one of these "friends" who knows about my kidney failure. Never once did he ask me how *I* was doing or how things were. Thinking back on it now, I shouldn't be surprised. He isn't much of a conversationalist. But how often do you have a friend who has to get a kidney transplant? I guess I figured this situation would be different. I wasn't looking forward to going to this anyhow and this is just the icing on the awful cake. Overall I'm tired of this particular group of people. Several of them are extremely self-centered and obnoxious. Another is loud. Another drinks too much. Yet another is arrogant and rude. The last one is quiet and gets bullied by the rude one -- and won't stand up for himself. Overall, it's just a stressful and unpleasant experience for me, but for some reason, my husband wants to go. I tried to explain that I wasn't interested because these people irritate me, and he accepted it initially -- I thought. Later when it came up again, he was obviously irritated. I suggested he go w/out me and he didn't want to do that. So my choice is to go with him or put up with his bad feelings about it FOREVER. It is obvious to me that he doesn't appreciate how much I don't want to go, but since he won't go on his own, my only choice is to go and put up with it for another night. And I really don't like Friday night activities. It's been along week and I have class in the morning. I want to get some sleep tonight. I can't imagine the fuss he'd put up if I made him come with me to something he didn't want to attend. What's particularly crazy is the fact that he is never like this -- I can't remember another time when he's gotten so upset about me not wanting to do something he wants to do. I just don't know what to make of it so...I'm going.

Another thing is that I can't get several problems solved at work. It's the kind of thing you must rely on others to fix. I'm forever having to put my forward momentum in someone elses hands. Frustrating. The thing about it is that I don't realize how much stress I'm under until I get so frustrated I need to cry or yell at someone NOW. Like I feel myself moving over that edge and I realize just how much stress I'm under. That's where I got today. I'm feeling better now, but I can feel how tired I am -- around my eyes. They are heavy. I'm physically and emotionally tired. I'd like to go home and sit on the couch.

More Research About Low-Protein Diets and Chronic Kidney Disease

I spoke to my doctor about a low protein diet. She mentioned the Modification of diet in Renal Disease (MDRD) study which she claimed was a large study that excluded diabetic CKD patients and, therefore, had a lot of PKD patients. She said it proved there was no proof that such a diet would slow the progression of PKD. I am looking into it further. It seems she is more concerned (as are other nephrologists) with patients being malnourished prior to dialysis or transplant. She was more adamant about me eating more protein than I have been than she has been about anything else we've discussed. I am eating around 35-40 grams of protein per day. A pretty normal amount. I was shooting for 30, but making about 35 most days.

Because of our conversation I am doing more research on the MDRD study specifically. What I've found is not exactly what she indicated, but I've only done preliminary searching. It seems that there is still no consensus about low-protein diets. Some doctors say it does slow progression, others say is doesn't and yet others indicate that the studies are inconclusive -- that there seems to be some evidence for the positive, but not yet enough to be conclusive. Here are a couple of citations and abstracts for articles I found this morning:

D. W. Johnson. Dietary protein restriction as a treatment for slowing chronic kidney disease progression: the case against. Nephrology (Carlton),11:1,p.58-62 Abstrac: Low-protein diets (angiotensin blockade; and (vi) low-protein diets are associated with both statistically and clinically significant declines in nutritional markers in chronic kidney disease populations, which already have a high prevalence of malnutrition. Patients with progressive kidney disease are therefore likely to be better served by avoiding dietary protein restriction (thereby ensuring optimal preservation of their nutrition) and instituting alternative, proven renoprotective measures (e.g. renin-angiotensin system blockade, blood pressure reduction and statin therapy).

A. S. Levey, T. Greene, M. J. Sarnak, et al. Effect of dietary protein restriction on the progression of kidney disease: long-term follow-up of the Modification of Diet in Renal Disease (MDRD) Study. Am.J.Kidney Dis.,48:6,p.879-888 Abstract: BACKGROUND: The long-term effect of a low-protein diet on the progression of chronic kidney disease is unknown. We evaluated effects of protein restriction on kidney failure and all-cause mortality during extended follow-up of the Modification of Diet in Renal Disease Study. METHODS: Study A was a randomized controlled trial from 1989 to 1993 of 585 patients with predominantly nondiabetic kidney disease and a moderate decrease in glomerular filtration rate (25 to 55 mL/min/1.73 m(2) [0.42 to 0.92 mL/s/1.73 m(2)]) assigned to a low- versus usual-protein diet (0.58 versus 1.3 g/kg/d). We used registries to ascertain the development of kidney failure (initiation of dialysis therapy or transplantation) or a composite of kidney failure and all-cause mortality through December 31, 2000. We used Cox regression models and intention-to-treat principles to compute hazard ratios for the low- versus usual-protein diet, adjusted for baseline glomerular filtration rate and other factors previously associated with the rate of decrease in glomerular filtration rate. We estimated hazard ratios for the entire follow-up period and then, in time-dependent analyses, separately for 2 consecutive 6-year periods of follow-up. RESULTS: Kidney failure and the composite outcome occurred in 327 (56%) and 380 patients (65%), respectively. After adjustment for baseline factors, hazard ratios were 0.89 (95% confidence interval [CI], 0.71 to 1.12) and 0.88 (95% CI, 0.71 to 1.08), respectively. Adjusted hazard ratios for both outcomes were lower during the first 6 years (0.68; 95% CI, 0.51 to 0.93 and 0.66; 95% CI, 0.50 to 0.87, respectively) than afterward (1.27; 95% CI, 0.90 to 1.80 and 1.29; 95% CI, 0.94 to 1.78; interaction P = 0.008 and 0.002, respectively). Limitations include lack of data for dietary intake and clinical conditions after conclusion of the trial. CONCLUSION: The efficacy of a 2- to 3-year intervention of dietary protein restriction on progression of nondiabetic kidney disease remains inconclusive. Future studies should include a longer duration of intervention and follow-up.

S. Mandayam and W. E. Mitch. Dietary protein restriction benefits patients with chronic kidney disease. Nephrology (Carlton),11:1,p.53-57 Abstract: The prevalence of chronic kidney disease (CKD) is rapidly increasing so every strategy should be used to avoid the complications of CKD. Most CKD symptoms or uraemia are caused by protein intolerance; symptoms arise because the patient is unable to excrete metabolic products of dietary protein and the ions contained in protein-rich foods. Consequently, CKD patients accumulate salt, phosphates, uric acid and many nitrogen-containing metabolic products, and secondary problems of metabolic acidosis, bone disease and insulin resistance become prominent. These problems can be avoided with dietary planning. Protein-restricted diets do not produce malnutrition and with these diets even patients with advanced CKD maintain body weight, serum albumin and normal electrolyte values. Non-compliance is a problem, but this can be detected using standard techniques to provide the patient with appropriate responses. The role of dietary protein restriction in the progression of CKD has not been proven, but it can reduce albuminuria and will prevent uraemic symptoms. Until a means of preventing kidney disease or progression is found, safe methods of management such as dietary manipulation should be available for CKD patients.

C. Meloni, P. Tatangelo, S. Cipriani, et al. Adequate protein dietary restriction in diabetic and nondiabetic patients with chronic renal failure. J.Ren.Nutr.,14:4,p.208-213 Abstract: OBJECTIVE: To evaluate whether a dietary protein restriction is useful for slowing the progression of chronic renal failure (CRF) in diabetic and nondiabetic patients and to analyze the possible risk of malnutrition after such a dietary regimen. DESIGN: Prospective, randomized case-control clinical trial. SETTING: Nephrology outpatients. PATIENTS AND OTHER PARTICIPANTS: A total of 169 patients, 89 affected with CRF and chronic hypertension and 80 affected with overt diabetic nephropathy (24 suffering from type 1 and 56 from type 2 diabetes) and chronic hypertension. INTERVENTION: Diabetic patients and nondiabetic patients were randomly divided into 2 groups: 40 diabetic patients received a low-protein diet (0.8 g/kg/day) and 40 were maintained on a free protein diet; similarly, 44 nondiabetic patients received a low-protein diet (0.6 g/kg/day) and 45 were maintained on a free protein diet. The investigation lasted 1 year. MAIN OUTCOME MEASURE: Renal function and nutritional status. RESULTS: At the end of the study, there were no statistically significant differences in renal function between treated and nontreated diabetic patients, whereas treated nondiabetic patients showed a lower decrease in renal function compared with the nontreated group. In both diabetic and nondiabetic patients, the mean body weight and obesity index decreased significantly in treated patients compared with nontreated ones. Serum albumin and prealbumin were stable in all patients during the whole study time, and there were no other signs of malnutrition. CONCLUSION: An adequate dietary protein restriction is accepted by patients, and it is well tolerated during a 12-month follow-up. Without any sign of malnutrition, it is possible to get near the ideal body weight and to reduce the obesity index and the body mass index, which are both well-established risk factors for developing cardiovascular pathology. In nondiabetic patients only, we observed a significant slowing of the progression of renal damage.

The Last Tests

This morning I had to go to the medical center for the last of my pre-transplant tests and to meet with the social worker. I had an echo cardiogram and an abdominal ultrasound. They told me not to eat or drink anything from midnight on the night before the abdominal ultrasound. Those who know me know what a difficult task that is for me to follow. I NEED my coffee in the morning. Without it I am extremely irritable. Then I find out that the echo will take nearly a full hour. I made sure to tell them that I had to be at the 2nd appointment by 8:45 (15 minutes prior to the actual appointment.) They called the office at the medical center where my 2nd appt was and found out that if I wasn't there by 9a.m. they would cancel my appointment. Nice. They needed to put dye in me to increase the resolution and clarity of the echo so it took a bit longer. Honestly, I looked at the screen during the entire process and wasn't able to tell a difference between the scans before and after the dye was injected. They were super friendly and able to get me finished up by 8:55 a.m. So I ran to the next appt...in high heels...

And I made it in time. Then I had to lie in a cold room, with a thin cover over my naked top half while she scanned my tummy and kidneys. During this ultrasound, I have to roll onto my side and lean back a bit. I'm in good shape, but the leaning back, without a pillow, makes you very uncomfortable after a few minutes. I was on my side for at least 20 minutes, holding very still and using my abs to support the position. It seemed like she was going over and over the same spot again and again. Maybe she's not very good at it? And the right side took a LOT longer than the left. Whatever.

Then I actually got to eat something. I got a plate of food at the WORST hospital cafeteria on the planet. So bad. I had eggs, potatoes a biscuit and a donut. Real healthy, eh? Well, I just didn't care. I was hungry and that was just about all they had. But I didn't eat a lot....just one egg (7 grams of protein.) Oh, and a friggin cup of coffee. Thank goodness.

Then I had an appointment with the social worker -- another member of the transplant team. Again -- whatever. They called me into the office at appt time. Then, oddly enough, they weighed me and took my blood pressure. Seems odd to me that they would need to do this when I'm only coming to see the social worker, but who am I to question. Then 10 minutes after my appoint time, the social worker joins me. She seemed nice enough. Oh, I forgot to mention that I have a new transplant coordinator. I guess they fired the one I met at my transplant evaluation. And I really, really liked her. I want to find her and ask what happened.

Back to the social worker. She asked me a lot of questions and suggested I sign up for medicare. I guess I qualify when I am diagnosed with end stage renal failure. And they will pay for a lot of the drugs. So now I gotta do that. And she mentioned that there is a monthly support group. I don't really want to go to the support group. I don't want to be with other sick people. It will make me sad because I'll be afraid I'll turn out like them. I mean, in all likelihood, they are old and/or fat and unhealthy and probably they eat meat. I know that sounds mean, but I want to model my own image of kidney disease. The memories of my father's experience and look are already difficult for me to handle. I don't want to be in the same room with others' and their experiences.

The social worker suggested I get my husband to begin filling out the transplant donor paperwork. I should be approved by the transplant committee next week. After that, they'll start evaluating possible donors. Also, I got labs done again today. I'm looking forward to seeing what the creatinine is doing.

I was home sick this week for 1.5 days due to severe cramps. I get them so bad I actually have thrown up before. Thankfully, I was able to keep myself from doing so this time, but I was quite nauseous and came close. This doesn't happen to me every month either, thankfully. In any case, I am very behind at work. I have a project that was due on Tuesday, but I'm still not done. Also, I need to get AWAY! My husband and I are going to the desert for the weekend. It's hot and dry -- just wonderful for hanging in the pool all day with a 12 pack of cold beer nearby. I'm looking forward to it. In fact, I'm skipping my biology class so we can leave first thing Saturday morning. I have a new swimsuit, too. God get me outta here.