CHRONIC POSITIVITY – Life with Polycystic Kidney Disease

I got a call from the transplant coordinator about 20 minutes before I left for dialysis to tell me that the transplant “fell through”. The potential donor didn’t meet the criteria to donate. She died of asthma, so my guess is that she had too much down time (time without circulating oxygen). I’m fine with how it turned out, although it would have been nice to get a kidney. At least I’m close; this is the 2nd call in less than 1 month. 

Dialysis ended early (about 40 minutes) due to the weather. Fine with me; it’s been a wierd day, and I was glad to get home. I only was 0.4 kg above my dry weight at the end. 

Beginning wt: 90.6 kg. End wt: 87.9 kg. 

Kevin’s surgery went well. I got to see him after he was done (I was on my way to dialysis when he was leaving). Judging from his behavior after the sedation, I’d say he’ll be a happy drunk. The only issue he has is that he’s a little nauseated, and has a terrible taste in his mouth. His pain is minimal (he’s still numb from the local anesthetic). 

I have an email that I’ll send out when the transplant takes place; it will include Jackie’s cell phone number. If you want to be on the notification list, email me.

 i just got a call from the Transplant Coordinator. They have a kidney, donated by a 47 year old woman who died of an asthma attack. I’m second in line, but they “have issues” with the person ahead of me. She told me not to eat breakfast, and she will call me later. 

I just told Jackie that there may be 2 of us having surgery today (Kevin gets his wisdom teeth out this morning), and to get her Ativan ready…..

I slept for most of dialysis yesterday.  Woke up to the taste of maple syrup again (my Iron infusion). Interestingly, I found another person who experiences the same taste with Venofer. 

I find that when I wear my splints to dialysis, I get a “restless legs” flare up. Yesterday, I went without them, and did better. Maybe I’ll just take them off prior to sitting down. The only problem with that is that sometimes they are difficult to get on, and with 2 holes in my left arm, I’m afraid they’ll bleed.

I still may need to go up on my dry weight again. Cramps at the end of dialysis, and lightheadedness at home last night. BP at end of dialysis was 108/58.

Monday was the 6th anniversary of my gastric bypass surgery. I would say that it’s successful; 210 lbs lighter today than pre-op, and I’ve kept it off (although the kidney failure helped keep it off as well).

Speaking of surgery, Kevin goes tomorrow to get 4 impacted wisdom teeth out. Unfortunately, I can’t be there, because I have dialysis, but Jackie, her sister, and their mother will be there (talk about multiple high anxiety!).  Kevin’s extremely nervous about it. I’ve been there, done that, and it’s a piece of cake (compared to other surgeries), but to him, I understand that it’s something major. So that’s why I said to him this morning that I talked to the doctor in the Peds ICU, and had him reserve a bed for him “just in case”. For those of you who don’t know me, I was kidding him. He’d do the same to me if the roles were reversed….

Digger continues to amuse us. Last night, he went into the bathroom, jumped into the empty tub, and fell asleep.

Coming soon, to an office near you….

 New needles today, because the hospital wasn’t able to reorder the ones they used previously. They weren’t able to get the bigger 15 guage needles, so they were using 16 guage needles. The new ones are sharper, which means less pain; they will be ordering the 15 guage in this brand. Another nice feature is that it’s much easier to “flip” the needle. This involves turning the needle 180 degrees while it is in the fistula so that the bevel is opposite where it was; this is done when the pressure in that line becomes too high.  

I still had some cramping towards the end, and almost blacked out tonight after bending over to pick something up, but I’ll give it a few more treatments before deciding if I need another dry weight increase. 

Beginning wt: 89 kg. End wt: 87.5 kg (which is my new dry weight).  

Digger,our Golden Doodle, follows me around wherever I go. It’s nice to have a dog to be close to, but it gets a little annoying when, after petting him for over an hour, he expects MORE.  He continues to be mischievous. The other day, Jackie was in the tub, and he jumped in so that he could sit on her lap!

Global Warming? (no, just an anomaly, but I’m sure there will be some that blame it on that)

“Those who surrender personal liberty to lower global temperatures will receive neither.”

I  saw this on a forum today, and it hits the proverbial nail on the head:

“There’s no one less attractive than a beautiful self centered conceited bitch.”

Given that I spent Tuesday evening with frequent leg cramps and almost blacked out when standing up several times, as well as that my BP has been low at the end of dialysis, I asked my Nephrologist to increase my dry weight. He agreed that it would be a good idea, so I am now a dry weight of 87.5 kg. 

Despite this, the machine took off an extra .6 kg (600 ml of fluid), and that is with ending 20 minutes early (the dialyzer/tubing clotted).  I got the rest of my labs back, and my KT/V is stable at 1.56, and my pre-dialysis BUN was 74. 

The dietician talked to me today, and gave me a “gold star”, but mentioned the phosphorous. I’ll work hard at bringing that down for the next lab draw in 2 weeks. 

I got a dose of IV Iron today. In fact, I’ll be getting 10 doses this month (total of 1000 mg). My ferritin was low nornal, and my transferrin saturation and iron levels were below normal. Maybe that will give me a boost. (iron deficiency is very common in kidney disease, and the body needs it to produce blood cells, especially since I am getting Epogen/Procrit).

Beginning wt: 89.1 kg. End wt: 86.9 kg.

I didn’t gain as much between treatments, even though there was 3 days between dialysis this time. My urine output was a little better the past several days. I noticed that I get lightheaded lately and “see stars” when I get up to quick: my guess is that my “dry weight” needs to be increased. 

Beginning wt: 89.2 kg. End wt: 86.6 kg. 

My bronchitis seems to be better today; my chest isn’t as tight and my cough is more loose.

My hemoglobin is good, but my iron is a little low. Phosphorous is higher (I’ve been a bad boy and have been drinking more milk than usual).  PTH is now within range for dialysis patients (150-300); my Zemplar was stopped several weeks ago.

I went to bed last night at 10:00, and Jackie woke me up at 6. I felt horrible (I have bronchitis), so I decided to call in sick. I got back up at 7:30, called in, checked my email, and fell asleep until 2:30.  Although my chest is a little tight, and my throat is still sore, I feel better. Rest definitely helps. I plan on going to work tomorrow, though. Hopefully it won’t last long; I’d hate to get a call for a kidney, and have to turn it down due to illness….

I definitely have a decrease in urine output. Maybe 3 times/day, and not that much. That explains why I have more of a weight gain between treatments. It will be interesting to see how much tomorrow. They usually like no more of a weight gain than 3-5%. I have a dry weight of 87 kg, so that would be 2.6 to 4.35 kg.  I’ve gained a little over that the past several times, so I really need to watch fluid intake.