CHRONIC POSITIVITY – Life with Polycystic Kidney Disease

No more pain from the cystoscopy/stent removal. In regards to med side effects, I’m sleeping OK, the diarrhea is controlled (I increased my fiber, and that seems to help), but the hand tremors (from Prograf) are still somewhat bothersome, especially after my am dose (I take 3mg in the am, and 2mg in the pm). But again, I’ll take the minor annoyances over kidney failure any day. My weight seems to be hanging around 207 lbs, when just last week it was around 209, so that’s an improvement.

Oh, I forgot about another side effect: bruising from aspirin (a.k.a. ASA). Friday, I was walking in our hallway in bare feet, and stubbed my toe on a throw rug (not at all uncommon with CMT). By yesterday, I had a nice bruise (as well as pain and swelling). I posted a pic at the end of this post; you can also see the characteristic “hammer toes” as a result of the neuropathy.

 My blog hit 2000+ hits sometime Saturday afternoon. Not bad for being up less than 2 months (not sure how many my LiveJournal blog has, because  LJ doesn’t offer the blog stats option).

I found an interesting blog entry from Fabius Maximus on the economy: When Did Dude Predict A Recession?

This is a clickable thumbnail; the larger pic isn’t focused very well, because of my hand tremors, but this gives a pretty good indication of the bruise.  

Today is the 5 week anniversary of my kidney transplant. Doing better today. Not that yesterday was bad, but urinating was VERY painful after yesterday’s procedure. Today, it’s back to normal. 

My BP is normal today, which proves that BP trends are more accurate than single readings.

Jackie and Kevin put in our air conditioners last evening, so it’s much more tolerable inside today. I feel bad that I’m unable to do heavy lifting or weeding/gardening, but I know it’s for my own good. The heavy lifting restriction is from both the surgery and the fistula. One of the issues last night was that when we turned on the air conditioners, there was a musty smell, which means fungus. So, we sprayed Lysol inside the vent that shoots out the cool air, because fungus in my immune state could be life-threatening.

I posted some interesting articles related to transplants on MyKidney.com.

I also came across a contrarian view to current oil prices (which can be seen here). Time will tell.

I just got back from my appointments at Geisinger. I’m now tanked up with Venofer (Iron), and feel like I’m peeing needles after having a cystoscopy to remove my stent. When I had my transplant, they put a green rubber stent between the bladder and kidney, and today it was removed.  It was uncomfortable, but not terrible, but since it’s a potential source of infection, I’m glad to get it out. The Venofer was given via my fistula, so I only had 1 needle stick.

I definitely have to work on increasing my fluid intake this weekend, as it’s already triple H around here (hazy, hot, and humid). 

My weight is down, and my BP is down as well. It’s hitting the 50′s on the bottom, so I’ll have to watch that closely.

Another status quo day yesterday. Peeing well, pretty much pain free, I’m relatively active, and feel fine.

My weight is stable for the 4th day in a row, as is my BP and temp. Stools still loose, but tolerable. I did have the sensation of something in both eyes last night at bedtime, so I took an Allegra. Not sure what it was, but it’s resolved this morning.

My labs aren’t all back yet; the Prograf level will probably be run later this morning, so I have an email in to the transplant nurse to email me the results. I really like having this ability. It’s all done through a secure website, and I get a “tickler” email through my regular account telling me I have a message. I can also request, confirm, or cancel appointments, reorder prescriptions, view labs (although only after the doctor electronically signs off on them), request advice, check my immunizations, etc.

My other blog is doing well (as is the rest of the site). I’ve only done 2 posts so far (I’m working on a new one for tonight), but have had a decent amount of “hits”. As for my WordPress blog, I will probably hit 2000 views since starting it on April 17.

Not much new as far as the transplant; everything is status quo (which is good).  Vitals are all stable, and I managed to get more fluid in yesterday. My urine hasn’t caught up yet, as I think I might be on the dry side; it’s a darker amber color, so I need to take in even more today.

I slept well last night, and no more GI issues from the CellCept.  I had weekly lab work today at the local Geisinger clinic, but the results won’t be back until tomorrow.  Next week, I have a screening for BK virus, which I’ll explain further below.

I received material from Roche Pharmaceuticals, manufacturer of CellCept. They put together an excellent booklet titled “New Beginnings Wellness Guide”. There are easy to understand explanations on many aspects of transplant. One of the pages discusses “Getting To Know Germs”. Sounds boring, but with a suppressed immune system, it’s important. The 2 main virus groups that are a concern are the Herpes Family of Viruses and the Polyoma Family.

Herpes isn’t just an STD (Herpes Type 2). There are 8 different herpes viruses that infect humans, including those that cause chicken pox, mono ( caused by Cyto Megalo Virus and Epstein Barr Virus), shingles (the same that causes chicken pox), and cold sores (Type 1).  Infection/reinfection with these viruses can cause serious problems when immunosuppressed, including rejection, cancer (Lymphoma), or major complications with various organ systems. In my case, my donor was CMV + and I was CMV -. I currently take Valcyte to prevent CMV. My dose is higher (900 mg daily) due to me being CMV -. 

As for the Polyoma family, the BK virus is the one of concern.  By the age of 12, 90% of all Americans have been infected with BK. For someone with a healthy immune system, it’s not a concern. But when the immune system is suppressed, it can cause kidney damage/failure. The treatment is to change around the immunosuppressant meds and lower the level of immune suppression to the point that the transplant will not reject, and the immune system is able to fight off BK.  

I’m up and running on my other blog now at MyKidney.com.  This is a site that eventually will include multiple bloggers at various stages of CKD (Chronic Kidney Disease); I’m blogging as a new transplantee. As of now, there is me, Krissi (who runs the site, and had a transplant from her brother last year), and Elizabeth, who is currently on hemodialysis and awaiting a blue sequined kidney . I have done 2 posts so far, and the second post is on an interesting subject. The LA Times reported on 4 Japanese gangsters getting liver transplants at UCLA, which meant that AMERICANS awaiting livers were passed by at least 4 times. Check it out here.

My new kidney continues to work flawlessly. I haven’t been as good as before with fluid intake, but WILL be back on track today.

My weight is unchanged, BP and temp are stable,  but my input and output are less.

I did have 3 episodes of diarrhea yesterday (thank you, CellCept), I continue with intermittent hand tremors, and hardly slept last night (Prograf?). But those are minor annoyances that I can live with.

I have routine lab work tomorrow (“the big 3″-blood count, basic metabolic panel, and Prograf level).

On Friday, I have a Urology appointment to remove the stent between my bladder and new kidney. Prior to that, I have a nurse appointment in Nephrology to get an IV infusion of Venofer (Iron).

Going away for the weekend did all of us a lot of good, but it’s time to get back into my routine. I thought that I would have a hard time being away from work, but I’m actually keeping quite busy. I plan on resuming my weekend job when I return to my full time job, except I’ll probably only work Sundays for August, and in September, go back to Saturday and Sunday.

I haven’t blogged in a few days, because I was out of town. We went to Virginia (Fairfax) to visit relatives.

The biggest change over the past few days is that it is much more comfortable laying on my right side and back, rather than reclining.  I can lay on my left side for shorter amounts of time, so that’s getting better as well.

My BP is still good, and my weight is down. No fevers, but the diarrhea is back. I think it may be the CellCept, because I’m off the magnesium. Not a lot to do about that, so I’m taking Imodium occassionally.

We had a nice weekend. The weather was great on Friday and yesterday, but we had torrential downpours on Saturday when we went to DC. We got to 2 of the Smithsonian museums; the American Indian museum (overall not that impressive except for some artifact collections), and the Natural History museum (worth the trip). We were disappointed, as the 2 that we wanted to see, the Arts and Industries Building, and the American History museum were both closed for renovations.

Not much to report since my last post, although I’m not sleeping well the past 2 nights. Who knows; med side effect?

My vital signs are essentially unchanged. My weight fluctuates, but averages around 210 lbs. As long as I don’t gain more than a pound or 2, I’m OK with that.

I did try to put jeans on, but couldn’t get them buttoned. My abdomen is a little swollen from the surgery, and the nurse told me that it will take several months for it to go down, not to mention the fact that you can see the kidney somewhat jutting out.  We’re going tonight to get a pair in a larger size, as well as some shorts for the summer, since most of mine don’t fit.

Yesterday when I got home from the doctors’ appointments, we went to lunch, and then I came home again and fell asleep for over 3 hours! Fortunately, I have the time to do that.

I’ve also found that my appetite hasn’t been the best. I ate breakfast after my labs, and had almost a whole piece of toast, some scrambled eggs (which I didn’t finish), and chocolate milk (not a huge fan of this, but I needed a cold drink to take my meds, and I needed the phosphorous; otherwise, I would have had a coffee).  I guess there’s a reason they tell us “small frequent meals” right after the transplant.

The one thing I’ve been doing is reading. A friend bought me some books, and I just finished the first: Consent To Kill by Vince Flynn. I now have a new favorite author! I have a bunch of unread history-type books, and although I enjoy history, it’s not near as exciting to read as a spy thriller such as this. When I was a kid, I used to read all of the time. In High School, my favorite author was James Michener. I’ve read Chesepeake, Texas, Centennial, Tales of the South Pacific, Hawaii, and possibly some others I don’t remember. I always said that if you get through the first 100 pages of any of his books, you’ll then get to the good part (he goes into a long drawn out history of the area from prehistoric times to the time the story starts).

Feeling better each day. The minor issues I’ve had along the way; edema, arm pain, diarrhea, incisional pain, etc are all but resolved.

My daily vital signs are all good today. I also updated my labs, since they are now finally available to me online.

I had my weekly appointments today, which is why I’m posting later than usual.

They had difficulty drawing my blood today, but with what they had to work with, I’m not surprised. They ended up using “old faithful” (a small vein on the outside of my arm just below my elbow).

The Transplant Nephrologist was in first. His main concern is my anemia, and he is right on top of it. He thanked me for being “proactive”, as I had emailed him over the weekend to explain my ongoing iron situation, and had requested labs to check on it. Since he’s only seen me once since my transplant, I wanted him to know of the ongoing iron problem. He took the time to explain that due to my gastric bypass surgery, I probably malabsorb iron. Iron requires an acid environment (most of my stomach is stapled off, and my “pouch” may not produce enough acid to absorb iron; in addition, my acid secretions are decreased due to the Prilosec), and it also requires the parietal cells in the ileum (portion of the small bowel) as well (my bypass is before the ileum).  The plan is to watch the trend of my iron studies, and if still abnormally low, that I may need monthly IV infusions of iron.

As it turned out, my studies are all normal today, with the exception of my iron binding function, which is minimally below normal. So that is good. My hemoglobin is stable but low, and my hematocrit is fairly stable, although a bit lower than last week. I think that they said that I would need Procrit if the hematocrit goes to 25 or below, so there’s still some room there.  And I’m less concerned, because my hemoglobin is unchanged, so maybe the new kidney is producing erythropoietin now.  Also, he discussed my white blood cell count, which is low. That is due to the Valcyte and CellCept. However, he explained that since my segs were high, I’m more or less protected from viruses, but since I had “Campath Induction” , my T cells were essentially wiped out, making me more susceptible to bacterial infections such as TB.

The Transplant Surgeon was in last, and was very pleased with both my labs and my progress. They did a lab called an Immune Cell Function last week. As it was explained to me, this is a guideline for them to use to determine the amount of my immunosuppression, and it is “right on” where they want it. My phosphorous and magnesium are now both within normal, so I can stop the Magnesium Oxide-yea! My Prograf level (FK-506) is finally normal, so I assume my dose stays the same (this wasn’t back until after my appointment).

I did print out my “daily vital signs” spreadsheet, and the Transplant Nurse told the surgeon I’m “anal”. I agree, however, I also did it to occupy my time as well. But I think that the surgeon is more comfortable with me making sure that I do what I need to do, because he told me that I can come back in 2 weeks, instead of 1 week.

I also asked him about my cystoscopy next week (I’ll be getting my stent out). My concern is that I may get an infection, which will travel to my native kidneys. He said that he would  prefer not to give an antibiotic beforehand, because that promotes resistance. If I had a problem with my heart valve, then yes, he would, but not in this case.

I’m excited about a new blogging opportunity. I will be writing for a website that will have multiple bloggers writing on various aspects of kidney disease. I will be writing as a new transplantee. There are also future plans to expand the site, and I will probably be writing as a medical professional. I will post more details when things are up and running.

Feeling better today. Not as much fatigue, and no longer feeling cold (of course, it got up to the mid 80′s here yesterday, so that helped).

My weight is up a pound from yesterday, BP is great, and I had more in than out, but I’m still putting out almost 100 cc’s of urine per hour; must be more of the insensible losses.

Last night, I was able to sleep on my side, rather than in the recliner, which is a first since the surgery. The only problem was that I was only able to sleep on my right side, and my right arm “fell asleep”, and was somewhat painful when I woke up. I tried switching to my left side (the side the kidney is on), but that didn’t work. One of the long-standing sleep issues I’ve had is sleep position. I always slept on my side, but as my kidneys enlarged from my cysts, I ended up having to switch sides multiple times  per night. That’s still an issue, but last night, I just alternated between switching from my right side to my back, and that seemed to work.

My “natives” (the term for a person’s kidneys that they were born with, as opposed to the transplanted kidney) are still in, but hopefully will shrivel up to nothing. I expect to lose a good amount of weight when that happens, as each kidney can weigh up to 40 lbs each .