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BK Virus/Transplant update October 2011

October 13, 2011 5 comments

It’s been a busy end of the summer, and I haven’t posted in a while, so here goes.

Everything is going well-uneventful is good.

My BK virus levels have been variable, but overall are low.  The latest is 9200 copies in my urine.  The previous had been 25,700 (August 31), 36,600 (August 3), 80,300 (July 5), and 1100 (May 31).  My last Prograf (Tacrolimus) was 7.5, and creatinine 1.1.  My Acute Renal Failure from May has totally resolved, and hopefully did minimal damage to my kidney.  I’m over 3 years out from my transplant (May 3, 2008) and have yet to have had a biopsy.

I had my quarterly follow up in Transplant clinic at the end of August, and now only have to have labs for blood work every other month; they still check a BK Urine monthly, as they want to keep close tabs on that.  Another plus is that my transplant follow ups will be every 4 months rather than every 3.

My BP is trending slightly higher (I haven’t had any BP meds since I was on dialysis over 3 years ago).  I attribute most of that to stress, as I’ve started a new job in January, and it’s very intense.  Now that my foot is better, I will be able to start exercising (walking), so that should help.  I had my yearly exam with my PCP today, and my weight is 8 lbs less than this time last year, so I’m on the right track with that.

I had an appointment with the Vascular Surgeon back in July, and he recommends that I have my fistula tied off.  Not sure when I’ll do that, but probably will have it done in the upcoming months.  It’s a simple procedure, and the anesthesia will be conscious sedation (no general anesthesia unless they run into a problem).

I’m thrilled with my new Transplant Coordinator (similar to a Case Manager). She is your typical anal retentive RN, and does an excellent job. I have complete faith in her judgement, and she is able to answer my questions (my previous TC oftentimes either didn’t have a clue, or didn’t bother to find out the answers to the questions I had).

I’m thrilled with the repair on my left foot.  I saw an x-ray after the surgery, and have a bunch of hardware, including a 3-4 inch threaded bolt going straight up into my heel, as well as some plates and screws below my 1st and 2nd toes at the metatarsals (foot bones).  With my neuropathy, I have “hammer toes”; these were corrected on the first 2 toes, and they are now straight.  I no longer have to wear an AFO; I just have a solid plastic insert that I wear in my shoe.

I continue to receive messages from people with PKD and/or BK virus, and am happy to answer any questions posted for me.

As for my (fairly new) job, I love it!  I’m a RN Case Manager for a large health insurer dealing in disease management.  In addition to my knowledge base, I’ve also been able to put my personal health experience to good use.  I’m very open with my personal health issues, and this has helped immensely in several ways: understanding what my patients with chronic medical problems are going through, assessing potential problems with their meds and kidney status, and making suggestions that are helpful.  Case Management is a burgeoning field, and I plan on working on Case Management certification over the next 2 years, and possibly going on for a Master’s Degree in Case Management.  I’m 48 years old, and will probably be working another 20 years or more, so it’s not too late in my career to do this.

For those who are interested, I’m now on Twitter.  My posts are for the most part links to articles related to medical studies and discoveries related to renal, transplant, heart failure, respiratory, osteoporosis, and others.  I’m still working on figuring out Twitter, but hope to be posting more as time goes on.

November 2010 BK Virus update

November 17, 2010 2 comments

I had labs last week (my first BK urine in a while, as the last 2 serum tests were negative), and I have 41,200 copies in my urine.  Not bad, considering that I had over 39 million when first diagnosed.

My other labs are great-creatinine of 1.1, BUN normal (it had been in the high 20’s up until the past few months, although BUN isn’t a specifically reliable kidney function indicator) and a stable hemoglobin.

Since I’ve been getting emails and posts here with questions on BK (which I welcome), I’ve decided to start a discussion group on BK Virus at Yahoo.  If you would like to join, the address is http://health.groups.yahoo.com/group/bk_virus/

In other non-kidney news, the ongoing saga of my neuropathy continues (Charcot Marie Tooth).  I was working outside, and my left orthotic cracked.  I heavily depend on my orthotics to be able to walk somewhat normally, although I can go without  them (with increased risk of tripping, and my gait is very tentative).  The Orthotist did a temporary repair, and fitted me for a new one.  Although it took a few trip back for adjustments, my new orthotic is great!  He made it so it covers most of my lower left leg, thus giving me more support.  My left orthotic I say is a “Cadillac” while my right now feels like a “Yugo”.  I plan on replacing that sometime next year (they are almost $700, although insurance covers a good chunk of that).  The new one is on the foot that I had a pressure ulcer previously, and the design is much better at relieving the pressure at the pressure point where the ulcer is, and I’m thus taking a lot less Tylenol now, so that’s good.

For my US readers, Happy Thanksgiving!

October 2010 BK Virus/Transplant Update

October 20, 2010 6 comments

Busy end of summer, so I missed posting last month. I’ve had 2 straight months of negative BK in my blood, so next month, they will just  check the BK level in my urine.  I’m still on the Leflunomide; not sure how long I’ll be on that.

I had my quarterly appointment with the Transplant Surgeon and Transplant Nephrologist 2 weeks ago, and everything else is fine.

I did discuss the surgery to revise my dialysis fistula, and I decided to not go through with it yet, as it’s not causing any problems; it’s just huge, bumpy, and curvy-I can live with that.

My creatinine is holding stable at 1.1, and my blood counts are fine.  My urine protein and creatinine are still slightly elevated, but the Nephrologist wasn’t at all worried about it.  See the image below.

In other news, I’ve been walking without my AFO’s (ankle foot orthoses),and that’s been rough. I was stepping over something, came down on the forefoot, and my orthotic cracked.  I went to the Orthotist, and he temporarily fixed it, and fitted me for a new one.  The new orthotic won’t be ready until next week or the week after, and being that I’ll be on my feet a lot at work this weekend, I’m not wearing the AFO’s in case the fix doesn’t hold.  I can get by without them, but I’m likely to trip, and without them, my knees are starting to bother me as I don’t have the support of the AFO’s, and thus my knees are in a different position than when I wear them.

We live in a rural area, so we tend to put a lot of miles on our vehicles.  My wife only drives about 3 miles each way to work, but I drive 23 miles each way.  Thus, I tend to keep our vehicles until they die.  My 17 year old Chevy Astro (with 206k miles) finally went to it’s eternal rest, so we just bought a 2008 Chevy TrailBlazer with 18k miles on it.  It’s nice to once again ride in style.  In addition, it has 4 wheel drive, which will be useful when I have to go to work in the snow.

‘Til next month……

BK virus undetectable!

February 1, 2010 2 comments

Good news. The level of BK virus in my blood is finally undetectable!  it’s been since July that the BK was first detected; I’ve been off CellCept the whole time, and only taking Prograf.

My creatinine is still stable at 1.1, and my Immune Cell Function is right in the ideal range at 222.  My Prograf level dropped from 8.6 on 1/6/10 to 6.7 on 1/20/10.  Not sure why that happened, but it’s still in the desired range.  I have labs in another few weeks, and they’ll check for BK in my blood again, as well as my urine.  It usually shows up first in the urine, so I wouldn’t be surprised if there are detectable levels in the urine, but that will hopefully become undetectable soon as well.

The pressure ulcer on my foot is just about healed.  I had my orthotic adjusted, and the Podiatrist debrided the callus on my foot twice, so I think I can hold off on surgery.  I’ll be going to the Podiatrist on a regular basis, so that should help as well.

My sister is now 9 months post transplant, and has been having a rough time lately.  Her GI system is wreaking havoc on her.  She has lost quite a bit of weight since the Fall due to diarrhea and nausea.  She was hospitalized for a few days, had an endoscopy and colonoscopy, as well as a lot of lab work, but they couldn’t find a cause.  2 weeks ago, she developed jaundice.  It turns out that they found the reason for her jaundice (and hopefully the cause of the diarrhea and nausea); she has sludge in her gall bladder that is most likely causing a slowdown or blockage in her bile duct.  They weren’t able to fully visualize what they needed, as the cysts from her kidneys occluded part of the view of her gall bladder.  But the symptoms certainly are consistent with her symptoms, and fits with her history of rapid weight loss (right after the transplant).  Hopefully, another endoscopy (ERCP) will solve the problem; they can clear out the sludge with with this procedure.

BK update for August labs, Swine Flu

August 22, 2009 3 comments

Good news; the BK level in my blood went from 7,260 copies last month to 2,257 copies of the virus this month.

A co-worker had BK as well (coincidentally, she has Polycystic Kidney Disease as well), and she was off the CellCept for 7 months, the virus was finally controlled (it never leaves the system), and she’s back on her CellCept.

Everything else is going well.  The episode of phlebitis that I had hasn’t reared it’s ugly head since last month.  I think it happened due to a problem with my orthotics.

The pic above is similar to what I wear.  However, I had a strap put on right above the ankle as well.  I had been doing some intense walking during my lunch hour every day, and the strap was too tight.  It caused the vein in my inner ankle to become inflammed.  I’ve since took the strap off, I’m riding my recumbent bike instead, and no more phlebitis (phleb=vein and itis=inflammation).

Another problem I had in my left foot is some significant pain from an old injury.  About 12 years ago, I fractured the outermost foot bone.  A callous formed on the bone, and juts out of the side of my foot.  It constantly presses against the side of the orthotic.  I’ve dealt with it now for a while, and finally came up with a solution.  I bought a Dr. Scholl’s gel heel pad, cut it to fit, and have it placed so that it cushions the bone.  My pain is much less now (it will never be pain free), and those 12 hour shifts in the hospital should be a lot more tolerable.  I’m stuck as far as pain relievers, as I can only take Tylenol and narcotics.  I don’t like to take narcotics unless I’m desperate, so I was trying to get by with Tylenol Arthritis.  It helped, but the cushion will be much better.

In the kidney patient community, Swine Flu (H1N1) is certainly on our minds. As of now, it is a worldwide pandemic.  Bill Peckham’s blog (Dialysis from the sharp end of the needle) has an interesting post regarding how an overwhelming surge of cases will be handled (basically, who is treated, who is not treated).   Bill’s blog is also a great resource for other issues related to dialysis, and he has a regular listing of blogs in the kidney community.

The Department of Health and Human Services has a website that also may help answer questions at flu.gov.

I must admit that I had a misconception that I cleared up through flu.gov.  I thought that all of the vaccines for Swine Flu were live viruses, therefore making me ineligible for the vaccine. However, it appears that the injectable form will not be live (the same as the vaccine for seasonal flu), and there will also be a live virus vaccine as a nasal spray.

As with any decision, it’s risk vs. benefit.  I’m concerned that although there are clinical trials being carried out on the vaccine, they are not as comprehensive as normally would be done – obviously due to the time factor.  I haven’t decided yet whether I’ll get it, but after finding out that it isn’t a live virus vaccine, I may end up getting it.

Transplant Week 17, Random Stuff

August 25, 2008 Leave a comment

Busy, busy busy, which is why I haven’t posted in a while.  Last week, I had a few hours of overtime at work, and yesterday, I worked a 10 hour shift. We’ll probably have a lull at my full time job for the next 2-3 weeks, but since school is back this week, the kids will once again be sharing their germs, and we’ll start to see more strep and asthma towards the middle to end of September. I’m at a desk still, so I will have minimal exposure, and am not worried.

Nothing to report transplant-wise this week. I haven’t had labs since my last post, although I’m getting some done on Wednesday.

I’m still walking 5 days/week, although not this week. I have some skin breakdown on my right ankle from rubbing against my AFO (“splint” that helps support my ankle and foot when walking, due to problems related to my CMT).  I did put some Duoderm over it, but will have to forego walking for now. I’ll probably just do my recumbent bike for the rest of the week, since I usually don’t wear my AFO’s around the house.

Today, I have my regular follow up with the Bariatric doctor. Speaking of which, I had started seeing the doctors for Obesity in 1996 or 1997 (back in the Phen-Fen days). One of the doctors who I saw back then left our hospital for a job in Boston. I found out recently that she has written a book on the weigh-loss drug Alli that is now on Amazon.

We ended up not going to the School Board meeting 2 weeks ago.  It was a very hectic day, as I was tired from working 10 hours the day before, and Jackie had to go to see her mother, after she ended up in the Emergency Department for a fall. (she’s OK, but was pretty banged up; broken nose, broken finger, rib injuries, and bruising all over). I don’t think it would have done much good anyway. The only consolation is that the taxpayers are beginning to see how out of control the school board and administration are, and are beginning to confront them on their practices. 

Jackie started her new job at the end of last week (orientation) and will start in the classroom on Wednesday. She’ll be working in a classroom for autistic children at a privately-run school as a para-professional. The position is above that of an aide, but since she isn’t certified in Special Education, she can’t teach at this point. She has been in contact with her alma mater to look into getting certification in Special Ed, and it will only be 6 classes plus an internship. She hopes that her current job will count for at least some of her internship, and possibly even her 3 years as an Alternative Education teacher counting towards it.

I was flipping through the channels last night, and came upon the Olympics. it was the first time I had them on; I’m obviously not a big fan (I’m more likely to watch the Winter Olympics). It got me thinking about my cousin Bernie, who I haven’t seen in a long time (our grandparents’ 50th wedding anniversary party in 1985); my father and his father were brothers. Anyway, the last I knew, he was living in Taiwan. I “Googled” him, and after several different search terms, found that he’s now living in Beijing, and apparently has done well

It looks as though I’ll be building another computer. Kevin wants a new computer for Christmas, so I gave him the option of a manufactured box or a build-your-own. I’ll be watching Newegg over the next few months to pick up components as they go on sale and have free shipping. It’s not necessarily cheaper doing it this way, but the parts you get for the same money as the cost of a manufactured computer are superior.

Transplant Week 11

July 19, 2008 5 comments

Almost 3 months since my transplant, and I feel great!

I had labs again this week, and my kidney labs are rock stable. My creatinine is still 1.2, and I’m thrilled with that. My white blood cells have risen to almost normal, since decreasing the Valcyte. My hemoglobin is still low at 9.5, but it’s stable, and I’m not symptomatic. My labs last week for my iron stores were good. I found out that the criteria for getting Venofer (IV iron infusion) are a Transferrin Saturation below 20%; mine is 28%, so no Venofer in the near future. My Prograf level is right on the mark; it’s 9, and they want it between 8-10.

I started walking on a regular basis. I walk around campus at work (it’s a medical center campus), and then eat at my desk. The first part of my walk is uphill, and I’ve been walking about 20 minutes/day. I’ll increase that a little each week. One of the issues is that I hadn’t been wearing my AFO’s (leg “splints” which stabilize my weak lower leg muscles), so feet and ankles were turning out, causing pain in my ankle. That’s improved through the week. I’ll also be starting my recumbent bike at home as well.

I have an appointment with the Transplant Nephrologist and Surgeon this week. I don’t expect any major changes, though.

For those of you who follow my other blog at MyKidney, I have a new post about Positive Thinking and it’s relationship to health.

Kevin is now on his way to Philly, and tomorrow will be leaving for Clearwater, Florida with my in-laws. He’ll be thrilled, because he’ll get beach time AND will be fishing a lot as well. I’m not sure where he gets the fishing “gene” from; it’s certainly not from me or Jackie….

Monday is our anniversary. 18 years of wedded bliss. We’ll be going out to one of our favorite restaurants that evening (after work, of course). On a side note, the church we were married in, St Cecilia’s, is being closed, and merging with the “Italian” church about a mile away.
Tomorrow, we’ll be going to my family reunion (the Baird family, on my mother’s side). I really enjoy going, as I at least get to see a lot of the people I don’t see during the year, especially since we live about 45 minutes south of the area where the reunion is.

I did get my hard drive replaced. I used Acronis True Image, and was able to just restore the cloned image from the other drive onto the new one. I’ll definitely be using this program on a regular basis.