Posts Tagged ‘kidney transplant’

And Yet Another Surgery

September 26, 2012 2 comments

I’m headed for another medical first for me: 2 surgeries in 1 year.  The first surgery I had this year was when I had my dialysis fistula tied off in April (along with the associated debacle in the hospital several days later).

The previous April, I had surgery on my left foot due to an infection in my foot bone (osteomyelitis) as well as a deep tissue infected from a foot ulcer, and the associated debacle 3 weeks after THAT surgery that put me in to the hospital with Acute Renal Failure from an interaction with my Tacrolimus (I was prescribed Fluconazole for the Candida Parapsilosis in my foot, which caused my Tacrolimus levels to go to 33, leading to ARF).

I just now got back from the Podiatrist, and had the persistent ulcer on my right foot debrided, and given Cipro for the beginning of a cellulitis.  It never really healed well from the cellulitis I had last month, and started “acting up” again over the past week.  He told me I probably have a multiple organism infection, which if not treated, would most certainly become much more problematic, especially given my immunosuppression.

This is all a direct result of my Charcot Marie Tooth peripheral neuropathy.  The muscles in my leg have deteriorated over my 49 years, and although I use a fitted lower leg orthotic, there is a lot of pressure on the outside of my foot, which caused an ulcer.  It will never probably heal well, so my Podiatrist suggested I talk to my Orthopaedic surgeon about reconstructive surgery on my right foot.  I had it done on my left foot last year, and I’ve had no problems at all on the left since my surgery.

I knew this was coming, and although I’m hesistant to do it, I know I need it, and will have it done.

But, there will be 2 conditions I set before having it done (doctors HATE to hear that).

First and foremost, I will insist on a PCA pump, aka Patient Controlled Analgesia.  When I had my left foot done, the Anesthesiologist wouldn’t do a nerve block (rightfully so, being that I have neuropathy).  Thus, I ended up getting “bolus” doses of Morphine and Dilaudid, with much nausea/vomiting and poor pain control.  They did this because they planned on only an overnight stay, but it ended up that I was in for 2 days.  I had PCA for my kidney transplant and gastric bypass, and had excellent control of my pain with little to no nausea.

Second, I will have the Transplant Surgeons consulted while in the hospital to avoid any errors that put my kidney at risk.  They are the ones who manage my Tacrolimus, so they will be the ones to ensure that my kidney is safe.  After my hospitalization this past April when they gave me too high a dose of Vancomycin, I want somebody watching over the meds I get.

So for now, I’m hoping the Cipro helps, and will hopefully get an appointment to see Dr. Cush within the next several weeks.

As for my readers, feel free to contact me via the comments section.  There are people from around the world who read this blog, and I’ve had questions in the past, particularly about BK Virus treatment.  Thanks for reading and following.  I hope someone finds my posts helpful.


Lab Error

September 13, 2012 2 comments

I had great news today.  Apparently, the last urine BK virus specimen that came back with >700,000 copies. was a lab error.  Or, as my transplant coordinator called it, a “fluke”.

I had a repeat urine done on Monday, and there are only 500 copies of virus in my urine.  Not 500, 000, but 500.  I was diagnosed with BK virus in July, 2009, and at the time, I had greater than 39 MILLION copies in my urine.  Since then, it has intermittently been in my blood as well, but my serum BK was negative last week.

So I have to wonder how effective the Leflunomide actually was.

Now, I’ll get my urine checked for BK monthly.  That’s a BIG load off of my mind!

Foot Surgery Update and Labs

November 24, 2011 Leave a comment

Good news on both fronts.

I recently had labs done (although it seems like I am ALWAYS having labs done).  I’m on an every-other month schedule for blood work, but still get monthly checks on the level of BK virus in my urine. My creatinine is rock stable at 1.1, and my BK virus levels went down quite a bit since October; from 9200 to 1200, which is great! Hopefully, I’ll soon be seeing negatives. If/when that happens, it will be interesting to see if they want to put me back on CellCept. I haven’t taken it since July 2009, and there are no signs of rejection in my labs (I’ve never had a biopsy), so I’m hoping they’ll just keep me on “monotherapy” (Tacrolimus/Prograf). My Tacrolimus level is holding steady as well; 7.5 last month and 7.2 in November.

This past week, I went for my final Orthopaedics follow up from my April foot surgery. I’m walking great,and all I wear know on the left is a hard plastic shoe insert. I have to go for a slight adjustment for that, but it’s working out fine. It is a little weird being able for my ankle to bend while I’m walking, but I’m used to that now. I still wear the orthotic on my right, which keeps my foot in a set position, but I’ve been wearing that for 5 years now, so I don’t even notice that.

They did x-rays of my left foot before my appointment this week, and I was able to get a copy of before and after films, which I’ve posted below. (clickable thumbnails)

The doctor was a little disappointed that my left foot isn’t fully corrected, but I’m ecstatic with the result. He was only able to correct the first 2 foot bones, as I had an infected ulcer on the outside of my foot; doing so would have risked infection of the hardware.

I just finished a course of antibiotics.  Several weeks back, the day after the “big” Nor’easter, I was on my way into the house where I work as a nurse, and slipped on some black ice.  I landed on my back, and my elbow came down pretty hard on the road.  I had a superficial laceration of my elbow, and it hurt, but I just cleaned it out and went on my way.  2 weeks later, I went to my doctor, and was diagnosed with cellulitis of the elbow and bursitis.  The pain is finally gone, but it’s still a bit red, so I’ll have to keep an eye on it for now.

I am also going less frequently for transplant follow up; every 4 months, rather than 3, so my next appointment is January. I’m hoping that there won’t be any more repeats next year as I had this past year (unplanned surgery, acute renal failure).

On the work front, I’m switching positions within the same job. Rather than being a “float”, I’ll be working permanently at a clinic near my home.  It will be nice to have a set caseload of patients, rather than covering different offices each week.  I was supposed to also be doing case management in West Virginia (via phone), and even received licensure in that state, but that went by the wayside when I took the new position.  Ironically, I used to be a teacher in West Virginia, in the same area as the setting for the movie “October Sky”.

March 2011 Transplant Update

March 26, 2011 1 comment

The level of BK virus in my urine has gone done considerably since last month-9600 copies in February , and now just 2600 copies!   It will be 2 years in July that BK was first discovered, and at that point, the number of viral copies was greater than 39 MILLION. It’s taken almost 2 years, but there is a light at the end of the tunnel (although once in remission, it can still pop back up).

My other labs aren’t available for me to look at, but I don’t anticipate any major changes.

I once again have a cellulitis in my foot (I had it last month in the foot, extending half way up my lower leg; this time, it’s just the top of my foot).  I have chronic issues with my feet due to the neuropathy, and my PCP thinks I have have an infection under a callus on the side of my foot.  I’ve been on Keflex once again for 2 days now, and will see the Podiatrist on Monday (2 more days).  Hopefully, he’ll be able to get to the bottom of this, so that it doesn’t recur.

Short post this month.  Happy Spring to all of my readers!

January 2011 transplant update, new job

January 30, 2011 Leave a comment

I had my quarterly appointments this week with the Transplant Surgeon and Transplant Nephrologist; everything is stable (except I’m up a few pounds since my last visit; have to work on that).
The BK virus level in my urine plummetted down to 11,300 from last month. Yea!
I start a new job on Monday (1/31-ironically, my very first job ever (as a paper carrier), was started on this date in 1974.  I will be an RN Case Manager for an HMO doing disease management over the telephone.  After almost 22 years in Pediatrics, I’m switching to the “adult world”.  Some might ask if I’ll be able to do well with adults, as all of my experience is with children.  However, I have 17 years experience in phone triage; those who take this job may have experience working with the elderly, but no telephone experience, so I consider myself even with them.
My last day (obviously) was Friday, and it was bitter-sweet.  It’s really tough leaving my co-workers (office staff, nurses, and docs), and to be honest, I’ve had pangs of guilt, feeling as though I am abandoning my coworkers.  But to be honest, my Charcot Marie Tooth (peripheral neuropathy) is gradually worsening, leading to more of a loss of fine motor skills.  Being that I sometimes have to draw blood, start IV’s, and other tasks, I felt it was time to look for a position where I don’t have to depend on my physical skills. I rationilzed my decision when explaing to coworkers that it was time to move on, and the new job has more opportunities for advancement (which it does), but when I really thought hard about it, it’s more the fact that I need to depend more on my brain, as my phsical abilities are decompensating (although I was concerned that my job would eventually be eliminated, and still believe that it’s a possibility, although low).
I’ve triaged patients on the phone for almost 17 years now, and I feel that is my forte; this job depends highly on telephone assessment skills; thus, it is a perfect fit for me at this point in my career.  Anyway, it was tough saying “goodbye” to all of my co-workers (even though I’ll be employed by a different “arm” of the health system I work for now).  And there were several times when I almost became “emotional” (i.e. tears) on my last day.  However, I feel that I made the right decision.
My coworkers overwhelmed me on the day before my last day (the “penultimate” day). They had a very nice congratulations/good bye lunch for me.  When I entered the room, there was a single gift in the middle of the table (I honestly didn’t expect a gift).  When I picked it up, I thought it was a large book. When I opened it, it turned out to be a 32 GB 3G iPad!  Needless to say, I was beyond shocked.  On the back, was a very nice inscription, and upon reading it,  I had to hold back tears. I take my work seriously, and try to do the best I can, and it was apparent that I was appreciated more than I ever could imagine.

December 2010 BK update

December 23, 2010 2 comments

I had my labs this week, and although my blood work isn’t yet available to view on MyGeisinger, I received a message that my BK urine PCR is up to 77,500 copies of BK virus from last month’s 41,200 copies.  I’m not too worried about it, as it does sometimes fluctuate, and it’s much better than the >39 million copies when I was first diagnosed with BK. 

My feet are in much better shape than a year ago.  I have the pressure ulcer on my left foot under control, and have a new orthotic on that leg (the other one broke).  I plan on getting a new one for the right as well, as the new one offers better comfort and support.  It’s made of a different material, and is higher up on my lower leg.  It took a few weeks of adjustments and getting used to, but overall it is much better than the one I had. 

I received an email today with a link to a site that looks to be a dialysis activism site.  It contains a link to a database that allows dialysis patients to compare dialysis clinics on 15 key measures, ranging from mortality and hospitalization to transplant rates and infection control. I looked up the dialysis clinic that I went to, and it got very good “grades”. 

Next month I have my quarterly appointments with the Transplant Surgeon and Transplant Nephrologist.  Not much else to report, but when talking about my transplant, boring is good.  Merry Christmas and Happy Holidays!

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……