CHRONIC POSITIVITY – Life with Polycystic Kidney Disease

Boring day at dialysis (TV on Saturday sucks even more than on weekdays). I did have one problem though. I started clotting off the dialyzer at the end of my treatment. Here, my Heparin didn’t infuse. I got my initial 500 unit bolus, but the remainder didn’t infuse, and the nurse didn’t notice until the end of my treatment. I got all of the fluid off I was supposed to, but got off early because of the clotting (about 15 minutes).

They are still accessing the lower end of the fistula due to last week’s infiltrate higher up. My fistula hurt a bit during dialysis, and has progressively hurt since. Today, the area of the infiltrate is warm and tender (mild pain), but it’s difficult to tell whether it’s red, since the hematoma and bruising is so extensive (as someone who saw it last night said, “the pictures on your blog don’t look near as bad as in person”).� I’m getting a little concerned about it; clot vs. infection vs plebitis. Hopefully if it’s anything, it’s the latter. I’m going to message the Nephrologist tomorrow to let him know. I have a feeling that there will be a venous doppler study or another fistulagram in my not-too-distant future.

Going back to last week when the Nephrologist was doing rounds, he was on his way to Austin Texas this weekend, and thought of something to tell me, so he called me from Texas while I was at dialysis, and told me that if someone is inactive on the Transplant List, they still accumulate time, and when they re-activate, they could be ahead of me.

Jackie is strongly encouraging me to go to the Emergency Dept tonight for my arm. No way will I sit there for 10 hours, and then have them tell me what I already know, and then tell me to follow up in the morning with Nephrology. I’ll skip going, and contact Nephrology in the morning (actually I’ll message them tonight through email).�

Beginning wt: 94.8 kg End wt 92.3 kg.

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I have the fluoroscopy images from my fistulagram/fistulaplasty last Friday. The Interventional Radiologist was kind enough to give me still images (he “anonymized” them for me) of various stages of the procedure. I’ve posted them below.

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This procedure made me think of the advancements in medicine since I’ve been born. My mother started dialysis in 1976. At the time, she had a temporary access called a shunt, which was a Teflon tube inserted in her wrist. They worked, but were very low tech compared to today, and they had a risk of coming out, which would lead to massive blood loss. She then went and had fistulas created in her arm, but they never matured. She finally ended up with a bovine graft in the front of her thigh; the doctor’s grafted a cow’s blood vessel between her artery and vein, and that lasted a while; she ended up with another in her other leg when the first one no longer worked. Her solution to go to dialysis without having to remove her pants was to sew a long zipper in the front of her pant leg; all she did was unzip it, and the graft was easily accessible.

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Back then, they didn’t have interventional radiology to fix your dialysis access. If anything needed to be done, it was back to the OR. Today, the technology is available to assess and maintain dialysis accesses WITHOUT going to the OR.� Other advantages I have now that my mother didn’t: better meds for phosphorous control (very important; high phosphorous levels lead to weakened bones and plaques in blood vessels), hormone therapy to control anemia (erythropoietin), bicarbonate use in dialysis (prior to bicarb, patients would invariably get nauseated with each treatment), better dialysis machines, meds to control Hyperparathyroidism, etc.�

For those in a situation similar to mine (parent or other close relative who had CKD/ESRD�20�or more�years ago), I�just want you to know that the outlook is much brighter, and the treatments more tolerable.�
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Yesterday was World Kidney Day. Take a moment to take a quiz about the kidneys; it’s very informative. Unfortunately, many people (including myself), don’t �realize how important they are until you they don’t work. For those of you who also have CKD, please check out Krissi’s “My Kidney Blog” for a cool blogging contest and a blog from another optimistic CKD’r.��Who knows; maybe we can start up a “kidney blog� ring”?�

I had a bit of an emotional breakdown in dialysis today. My Neph approached me today and asked how I was doing, and started to discuss my fistula. I told him that the plan was to do more fistulaplasty and eventually surgery, specifically opening the length of the fistula and inserting a graft. He told me it wasn’t done that way, and I told him what the radiologist told me, Dr. H said it wasn’t done that way, I said that I’m only repeating what was told to me, etc. I was getting aggravated, because I know what I was told; it may not have been correct, but it was what was told to me. He then said “hang in there, you’ll get a kidney soon”… Well, that was the wrong thing to say. I let it out at that point, and told him that I wasn’t too confident of that, he asked what was wrong…

I proceeded to tell him about getting a call and being the “primary”, the next time being the “backup”, and last weekend not GETTING a call for a kidney of my blood type. He got defensive, and assumed I was inferring wrongdoing in the selection process at our center; I wasn’t, I was inferring that something was going on at UNOS.� He asked if I wanted someone from the Transplant Dept to come to talk to me, and I told him that I already tried that a couple of weeks ago and that my questions were not welcomed by the nurse calling me with a kidney offer. He realized how deep he was in at that point, and started making calls.

My transplant nurse was down promptly to talk to me, and explained as best he could, the UNOS process for selecting who gets calls. It seems that each time, you might be placed differently, and it is not only based on seniority on the list (they always seemed to stress that seniority is the key factor), but also on appropriate match with antigens, and the patient’s specific situation (makes sense to me).

They very well could have told me all of this at my first appointment in June 2005, but with all of the information presented, I obviously didn’t retain it all. Plus, it’s almost 3 years later.

I felt much better after the explanation. I did also bring up about the average wait time. It has changed since I started, and is now 3-4 years (it was 18 months when I started). When I asked the nurse about that several weeks back, she was very short with me, and gave me the attitude of “how dare you question me” and almost as though “be happy you’re on the list and don’t ask questions”. I’m told that it will be addressed, and I got the impression that it isn’t the first complaint they received about this person. Had she taken 5 minutes of time to answer my simple questions, this could have been avoided. I think that with all that has gone on this week, it just snowballed on me. But, I feel much better about it.

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The one thing that I’ve observed is that everyone has a different opinion on what a particular problem is, and it gets very confusing to the patient. For example; the radiologist feels confident that the rash is not IV dye related, because it occurred so far out (40 hours) from when it was given; the nephrologist said it COULD be the dye. The family practitioner said it could be a drug or viral rash, and referred me to the dermatologist (I guess so that I could get even MORE confused). Not really; I know that there will probably not BE an answer to this, but it gets nerve wracking.

My arm is even more bruised today; pic below. It still hurts, but not as much as yesterday.

My BP is still low, so he upped my dry weight again to 92.5 kg. I gained quite a bit of weight this time, probably due to taking Atarax, and my mouth being so damned dry. I still have the rash, but will try without Atarax tonight.

Beginning wt: 96.4 kg. End wt: 92.3 kg.

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Hematoma about 52 hours out. The bandaids are over the insertion sites for my dialysis needles from today; they made sure to not go near the hematoma (thankfully).�

Still VERY itchy and rashy. I had my semi-annual appt with Dr. G (my PCP) today, and he referred me to the Dermatologist. In fact, they already called me with an appointment for next Thursday. The main reason for going is diagnosis, so that’s fine. Dr. G said it’s most likely a drug rash or from a virus; however, a friend of mine told me that viral rashes don’t itch (exception: chicken pox). One of my theories: there has been problems with heparin given during dialysis (allergic reactions). Maybe my dialysis got a batch that is bad, but wasn’t recalled yet? Other than that, the appointment went well. I gained about 15 lbs since summer, but that replaces the “unhealthy” weight loss I had when I was nosediving with my kidney failure.

My arm looks just lovely, as you can tell from the pics. It didn’t start bruising until mid morning, and it made up for lost time throughout the day. And yes, it does hurt. I figure there’s about 100-200 cc of blood in the tissues of my arm.

I’m finding my way around Linux, and the more I learn, the more I like it. Granted, it’s not as intuitive as Windows as far as installing things, but just like Windows, there’s a learning curve, and it becomes easy once you learn the basics. So far, I’ve configured my printer, used the Bit Torrent client to download another Linux OS (OpenSUSE) (even though the whole file isn’t totally downloadable yet), transferred pics from my camera, resized photos, and copied a CD (backup data cd); all of these tasks were very easy. Of course the main advantage of Linux: NO VIRUSES (at least so far), and the apps are free.

Hematoma Pics

Fistula about 4 hours after infiltrate. The bruise toward the elbow is from the balloon angioplasty from last week.

That’s not muscle; that’s a hematoma from the infiltrate about 28 hours after. The hematoma drastically hides the aneurysms in my upper fistula.

Not a very good start to dialysis today. Since the lower part of my fistula is so bruised from the procedure, they stuck the first needle halfway up the fistula, and the second at the top. The pressure on the venous (top) needle was high (340), but came down to 300 (ideal is, I believe, about 200, and max is 500).� The doctor came over, and had me lean forward to listen to my lungs (since I have the rash; more on that later), and my tubing got stuck between the bag of bicarb (fluid) and the chair. I moved my fistula arm to try to untangle it, and got excruciating pain. I’m not sure if my needle moved and pierced through the fistula, or whether the pressure caused the insertion site to infiltrate. I immediately called for help, and it was about 20 seconds (at 400cc/min) before they were able to run over and shut it off (which is quick).� I have a painful huge “gooney” on my upper arm, and no doubt will have a huge bruise there tomorrow.

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I told the Nephrology fellow about the rash, and he looked at it. He hemmed and hawed, and decided it was a drug rash from the IV dye that I had Friday, and that I should take Benadryl and Prednisone before getting dye again. This is the same doc that told me that I should get a Colonoscopy before my transplant, since I was at high risk for polyps, being that I have PKD (my Neph nixed that, since that isn’t true; diverticuli are common with PKD).� I realize that he’s still learning, but I don’t have much confidence in him at this point (although he is a nice guy), which was bolstered after dialysis, when I talked to the Radiologist who did my Fistulagram. Dr P told me that 90% of drug reactions to IV dye occur within 6 hours, and 100% within 24 hours. Since mine started about 40 hours after my dye, he was confident that it isn’t a dye reaction (which was my thinking before I even brought it to a doctor’s attention).�

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Dialysis went well after that. Beginning wt: 94.4 kg. End wt: 91.9 kg.�

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Dr. P didn’t have my Fistulagram images ready; he’s going to “anonymize” them, since I’ll be publishing them to the internet. No big deal; I’m thankful that he’s nice enough to offer to do this for me.

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Work is getting to be frustrating. I feel like I’m spinning my wheels with the patients of 1 doctor, and it’s not their fault. There is one of the doctors who NEVER looks at his phone messages, and has been slacking off BIG TIME with prescription requests. There was a request from Friday that the parent called 3 times for, and he didn’t do it. I believe he was there on Friday, and I know he worked the weekend and Monday, and yet he still didn’t do the rx. While that was only one, there were 6 others from last week that I had to remind him about, 4 or more days AFTER the request was put in. It not only makes for extra work, it makes for a lot of FRUSTRATION for those of us who have to deal with the patients calling in asking for their prescriptions. As for the messages, I print them out and put them on his desk, but he just moves them to another pile until I go up to him to tell him AGAIN about it (the other doctors actually read my messages on the computer the first time I send them, as it should be).� There is no solution to this problem, which is even more aggravating.

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I have a fine, macular (flat), pruritic (itchy as hell) rash on my back, chest, and abdomen. Other parts are itchy (scalp, sometimes on my leg), but it’s mainly on my trunk. I had my doctor look at it, and he said it’s either viral or from a drug. The only thing I’ve had that’s new is the IV dye on Friday. However, I had dialysis on Saturday (I have to find out if dialysis removes IV dye), and it didn’t start until Sunday morning, so I doubt it’s dye related.

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I took an Atarax last night after supper, and slept from 6:15 last night until 5:30 this morning! Atarax usually doesn’t do that to me; maybe because my kidney function is so crappy, the med is staying in my system longer…

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I’m getting discouraged with getting a kidney. On Friday, a patient who is near me at dialysis got a call for a kidney. That evening, I was talking to someone in the transplant department, and he told me that he couldn’t understand why I didn’t get a call as well, because I was the right blood type, and I’ve been on the list a lot longer. But, UNOS decides who’s up for a given kidney, and passed me over. Also, I think he said that I almost got a kidney the one time, and that it was a perfect match, but that they couldn’t get it here in time to put it in. I’m pretty sure that’s what he said, but I did have Fentanyl that day, and my mind may have been a little cloudy.

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Gotta go; time to scratch my back some more….

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Arm a bit sore today (expectedly) and a little red, but other than that, no problems. I took the dressing off, and there appears to be a tiny stitch; the nurse wouldn’t remove it (I don’t blame her; what if it started to bleed?).

My dialyzer started to clot with about 40 minutes to go. She rinsed some saline through, and I made it to the end. No venous pressure alarms, which have been happening more frequently. In retrospect, I’m sure that was due to the stenoses.

Beginning wt: 94.3 kg. End wt: 91.7 kg.

Check out this new dog “toy” . The dog in the pic looks exactly like ours, except for the shorter tail. (found via StumbleUpon, of course).

I spent a chunk of time yesterday at the hospital for my fistulagram. I got there at 9:10 for my 9:15 lab appt, and they took me back at 9:50. We then wasted some time in the coffee shop (I was NPO, so I watched Jackie drink her coffee), and then went to Radiology. Not a long wait to check in, and I was taken back to the initial area to get my history, vital signs and IV done. I then went to the IR (Interventional Radiology) Suite, and they prepped me. This involved a c/r (cardio respiratory) monitor, pulse ox, automatic bp cuff, and then prepping the arm. Dr. P came in, and started up. There was a bank of 4 monitors, some of which had the live fluoroscopy images of my arm and chest, so I was able to watch the whole procedure, and stayed awake throughout despite 150 mcg of IV Fentanyl.

It turned out that I had several areas of stenosis the length of my fistula up into my chest. After doing the initial images, he threaded a guide wire into the fistula and then inserted a catheter. For the next several hours, he inflated the balloon along the problem areas to widen it in the areas of stenosis (balloon angioplasty), and then placed a stent in a portion of the fistula (I think farther up past my arm). All in all, the actual procedure took close to 3 hours. He did say that he was surprised that I hadn’t had this before, as they like to have a fistulogram at regular intervals to avoid these problems to this extent.

It wasn’t extremely painful, just uncomfortable. It was a very strange feeling each time he inflated the balloon, and my shoulder felt like someone hit me with a hardball. The nurse told me ahead of time that the doctor tends to forget about asking about the pain while he is concentrating on the procedure (understandably so, since his main concern is the procedure itself), and that I should not hesitate to tell her when I had pain. So, everytime I asked, she gave me another hit of Fentanyl (of course, after Dr P gave his approval). He ordered it in 25 mcg doses, which I could hardly even tell were given, but the one time he ordered 50 mcg, and I got relief from that.

Next week, I’ll have pics of the fluoroscopic images. He told me to stop in on Tuesday and he’ll put them on my USB drive.

I was very impressed with both Dr. P and his staff. They made me feel very comfortable, and were truly concerned about me.

I have to go back in 2-1/2 weeks for a re-do, and will probably have to go back at regular intervals for a couple of visits. Ultimately, he said they will probably have to do surgery to insert a graft inside my fistula/vein to allow the areas of aneursym to go down, and prevent any further weakening of the vessel wall.

The usual boredom at dialysis today. On the one hand, it’s nice to be able to sit back in the recliner and watch TV, but it’s not worth the boredom (it is, however, worth it overall because it allows me to LIVE, so I won’t piss and moan anymore about it!).

Dr. H was in (my Nephrologist). I asked about the colonoscopy, and as I suspected, it’s not necessary prior to getting a transplant. My BP to START was 94/50, so he upped my dry weight again (to 92 kg). I ended with a 112/60, so that wasn’t bad.

Beginning wt: 94.3 kg. End wt: 91.3 kg (thus allowing me some extra fluids before Saturday!)

Fistulogram tomorrow. I won’t know until I get in there whether they will need to sedate me.

�I had labs done on Tuesday, but they were late in being posted to MyGeisinger.�

Phosphorous still a little high, but the dietician said that with chronic kidney patients, they allow a little higher than norm. Plus, I had some chocolate on Sunday, and have been drinking milk every day (bad boy!). Potassium is still good, iron and hemoglobin are a little lower.