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Decisions

March 13, 2013 2 comments

Decisions. We all make them from the time we get out of bed until the end of the day when we go to sleep. Which shirt should I wear to work? What are we going to eat for supper? iPhone or Android? Cable or satellite? Do I drive an extra 5 miles to save a penny a gallon on gas?

For those of us with chronic illness, decisions are even more complex and the stakes are higher. I was pondering this on the way home from my 3 doctor appointments today (my mind never seems to stop, which is probably why I need Trazodone to help me sleep).

My first 2 appointments today were with the Transplant Surgeon and Transplant Nephrologist. Everything is going well with my kidney. My creatinine is still rock stable at 1.2, and although I again have BK Virus in my urine after 2 negatives, there were only less than 6000 copies in my last urine specimen 2 weeks ago, far below the 2 million copies that my Transplant Surgeon said is the level that he would be “worried” about. It was my last appointment, with the Neuromuscular Neurologist, that got me thinking about the topic of decisions.

As I posted last Spring, I was on Leflunomide, which was used to keep the BK Virus at bay. Not an FDA approved use of the drug, but then again, there IS no standard treatment for BKV. I agreed with the decision by the Surgeon to start Leflumonide. But when my hands were so weak and shaky that I couldn’t get a key into the door, it dawned on me that something was terribly wrong. I figured out that it was not progression of my neuropathy (Charcot Marie Tooth), but rather, was the Leflunomide ravaging my peripheral nerves (and yes, ravaging is an appropriate term). At the time, I phoned my Transplant Coordinator, and was told to stay on Leflunomide, and to see a Neurologist. The referral was made, but 2 months later, I still hadn’t even been contacted about an appointment. As the neurotoxicity worsened, I stopped taking the Leflunomide, and contacted the Transplant Department. The Transplant Coordinator covering for my regular Transplant Coordinator spoke with the doctor, and called me back. When I told her that I stopped the Leflunomide, she asked me if I wanted to lose my kidney. Sheesh, another decision. My first reaction was that she had a helluva lot of nerve putting it that way (I still think that), and being that she is not living with the effects of the med, it wasn’t too professional of her to put it in those terms. Putting the cart before the horse, she continued on by telling me that I may have to receive a last ditch treatment, intravenous Cidofovir, to get rid of the BK virus, since I had stopped the Leflunomide. The problem would be that Cidofovir is VERY toxic to kidneys, and would put my transplant at great risk. Damn, another potential decision. When she went back to the doctor, it turns out the plan was watchful waiting. It obviously turned out well, as my kidney is doing just fine.

Just last Fall, I had a reconstruction done on my right foot. Of the 8 surgeries I’ve had in my life, this was by far THE most painful surgery I have ever had. I was literally screaming in pain when I got to my room after the surgery, but today, for the first time in years, I am walking without a hard plastic orthotic bracing my leg, and my foot is straight. That was a good decision, although during the recovery period, it would have been easy to argue that it wasn’t.

Which brings me to my Neurology visit today. The Neurologist and I had a long talk (my first visit with this doctor), and a good portion of that was on the topic of medications. It turns out that the drug I take to suppress my immune system to prevent my body from rejecting my kidney, Tacrolimus, is a known toxin to peripheral nerves. It’s not likely to cause the damage that the the Leflunomide did, as it’s a “lesser” toxin, but over time, it most likely will cause SOME damage. Risk vs benefit. Progressive damage over decades vs dialysis within months if I don’t take the Tacrolimus and reject my kidney. I’ll take the former. It all boils down to risk vs. benefit.

But being a glass half full kind of guy when it comes to health, there are people far worse off than me. Like the 7 year old local girl who recently lost her life to cancer (Neuroblastoma). Or many of my patients who have disease such as heart failure, cirrhosis, or COPD whose diseases will progress to end stage within a matter of months or several years. I see it every day in my job as a Case Manager.

A doctor will oftentimes make decisions for you – here’s a pill that I’m going to prescribe to help with your blood pressure or cholesterol. A GOOD doctor will explain the risks and the benefits and then ask for your input and decision. Life is full of risks. Too many people today are under the illusion that risks were something we face “in the old day”. Surely, with all of the advancements in science, we shouldn’t have to take risks…. Sorry to burst those people’s bubble, but that’s not the way it works. In fact, with advancements come even MORE risks and more complex decisions. Science and medicine can fix a blockage in the arteries of your heart, and you’ll live longer, as long as you follow the Cardiologist’s instructions. But as we live longer, there is an increased risk that other problems will pop up. And this leads to more decisions.

Unless you are a child, you’ve probably made a decision in the past which you have come to regret. Last year, I had surgery to “tie off” my dialysis fistula. I was told that I would get inflammation in the vein of my upper arm, and it would become red and painful. It did, but when I had a fever of 102, along with the fact that my immune system is suppressed, I made the decision to seek treatment in the Emergency Department (it was a weekend). The doctor decided to admit me to the hospital, and the pharmacist recommended a specific antibiotic. The nurse that was working was a friend of mine, and looked a little nervous when she brought the antibiotic in. It was Vancomycin, which is known for it’s potential to cause kidney damage. Not only that, but the dose was very high-3 grams, followed by 1,750 mg (1.75 grams) every 12 hours after that. I knew it was a high dose, but the facts were that I had a potentially life-threatening infection. Do I risk not treating that and saving my kidney, or risk my kidney to decrease the risk of death or potential problems of an untreated infection? I chose to get the antibiotic, and ended up with Acute Renal Failure from both the med and dehydration. Did I make the right decision? Well, probably not, because they could have used a lower dose or a different antibiotic, but in the end, everything turned out ok, other than the fact that I was in the hospital a few extra days. Hindsight is 20/20. I learned from that one…

Just yesterday, I spoke with the adult child of one of my patients who has had a steady decline in her health over the past year. Her chronic diseases have been well managed up until recently, prolonging both her life and QUALITY of life, but recently, she’s had one problem after another. She made the decision to not get out of bed yesterday, and to not go for her endoscopy today because she has “given up”. She’s not tolerating the medicines that for so long have kept her illnesses at bay; they “come right back up”, probably due to a newly diagnosed disease that may be a result of one of the medicines used to fix an abnormal heart rhythm. Her decision is probably due to her thinking that things just aren’t going to get better no matter what she does, and she’s probably tired of all of the appointments, procedures, and drugs she has to take just to stay alive, and yet still live with her health declining. It’s her decision, and we’ll respect that.

I guess the point of all of this is that if you are faced with a decision, get all of the information you can so that you can make an INFORMED decision, consider risk vs benefit, and don’t beat yourself up when you make a wrong decision.

 

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Latest BK Levels and Foot Fix

February 27, 2013 1 comment

From a kidney standpoint, I’ve been doing well. I had 3 negative BK urine tests in a row, but the last one 2 weeks ago was positive for 5800 copies. Not bad, but another negative would have been better.

I still have some residual burning in the fingers from the nerve damage due to the Leflunomide I was on to treat the BK, but I’m off that now, and I can live with it. It’s interesting to note that I never had a negative BK Urine, but once I was off of it, I eventually had 3 in a row. It doesn’t mean anything as it’s anecdotal, but maybe they will do more research on BK to figure out a definitive treatment.

I am a RN Case Manager, and deal with several transplant patients, and a lot of patients with hypertension. I was able to “pick the brain” of a Nephrologist today who specializes in hypertension. I was not aware of this, but Prograf, which is a calcineurin inhibitor, is a potent vasoconstrictor. That means that it causes arteries to get smaller, thus raising blood pressure. Thus, the best antihypertensive choice would be one that causes blood vessels to relax.

I am currently on Lisinopril for my bp, as well as another antihypertensive, Inderal, which is used to treat my hand tremors that worsened after the Leflunomide damaged my peripheral nerves. It’s still not great, but my BP is controlled. I’m going to work on shedding a few pounds, so that should help a lot.

The latest big story is my foot reconstruction.

I had a major foot reconstruction of my right foot in November, and of today, for the first time in many years, can now walk without any orthotic in my shoe.

It’s strange not having my ankle in a fixed position, and I pretty much have to learn to walk normally. I have a tendancy to not flex my ankle, but I know I eventually will be back in the habit of doing this when I walk, based on when I had the other foot reconstructed.

The surgery itself was very painful, and the recovery long (non-weight bearing from Halloween to after New Year’s), and I’ve been in a Bledsoe boot since, but it was well worth it. My foot is very straight now, and although still swollen, it looks great.

I’ve posted x-ray images taken in January, after the surgery, and as you can see, have a lot of hardware.

 

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Foot Reconstruction A Success!

December 7, 2012 2 comments

I made it through my 2nd foot reconstruction with flying colors! On November 19, I had a cavovarus foot reconstruction of my right foot, to fix the the deformities caused by Charcot Marie Tooth. As I posted before, a non-healing neuropathic foot ulcer necessitated me having the surgery at this point. I knew I would have to eventually have it, but I was hoping I would have been able to put it off a little longer. However, I’m glad it’s now behind me.

For those familiar with medical “lingo”, the procedures I had done included a Dwyer calcaneal osteotomy, peroneus longus to brevis transfer, first metatarsal losing wedge osteotomy, 5th metatarsal head ex osteotomy, Jones transfer, posterior tib release, toes 2-4 hammertoe corrections.

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As you can see from the pics, the surgeon did a LOT of sewing!

I had a similar “reconstruction” done last year, although I didn’t have the hammertoe corrections.

The pain has been manageable this time. Due to the neuropathy, the Anesthesiologist didn’t do a nerve block, but due to excruciating pain (despite a Diluadid infusion/PCA pump), I was taken back to the PACU that night and another Anesthesiologist did 2 nerve blocks, which made the pain tolerable. Now, I’m able to get by with Tylenol and an occasional Tylenol #3.

I’m looking forward to FINALLY getting back to walking. I haven’t been doing any due to the pain from the pressure on the outside of my right foot while in my Ankle Foot Orthosis; there was an extreme amount of pressure on the outside of my foot due to the deformity. I can now get rid of the AFO, and once the cast is off, will be put in a “boot” (Bledsoe?) for a few weeks, and after that, will only need a hard plastic in-the-shoe orthotic insert.

My hemoglobin did drop down to 10.1 post op, but as of last week, I’m back up to 11.8.

As for my kidney transplant status, no “medical misadventures” this time. (here and here)

As you may remember, I had gone off of the Leflunomide back in May, which was used to keep the BK virus suppressed. I had a jump in BK in October from 600 to 5100, and was mildly concerned that it may become a problem, but as of my last check (last week), NO BK! If I’m not mistaken, this is the first that it was negative since April 2009!

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I’ve been off CellCept since August 2009, but since my kidney is doing well just on Tacrolimus, the Transplant Surgeon told me that he probably won’t restart the CellCept, even if the BK goes into remission.

I sure hope that I’m done with any medical “speed bumps” for the foreseeable future.

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An Antibiotic for a Virus

January 12, 2012 Leave a comment

I’m sure THAT got the attention of all of the doctors, PA’s, NP’s, and RN’s who tirelessly tell people that antibiotics don’t get rid of viruses. But in my case, an antibiotic is being used to suppress a virus.

I’ve been positive for BK virus since July, 2009. The previous April, when they were still testing my level of immune suppression (when the insurance still paid for the Immuno-Know testing), I was overly suppressed, so they cut back my dose of CellCept, and 3 months later, my BK urine was positive for >39 million copies. They stopped my CellCept, and it dropped precipitously, but never cleared. My blood also had BK present as well. I was treated that Fall with Cipro, and it cleared from my blood. My transplant coordinator was not at all aggressive, and let it slip. I eventually was put on Leflunomide, and that brought my levels down even further.

This past Spring, when I had my Prograf toxicity and renal failure, the levels went way up. This was a direct result of the negligence of my Transplant Coordinator, who never told the doc I was put on Fluconazole, which put my Prograf level in toxic range and caused Acute Renal Failure, and thus, the oversuppression of my immune system. So, I “fired” her, and chose a TC who I KNEW was very compulsive, and thus would manage my transplant appropriately. She began addressing the lingering BK, and my Leflunomide was doubled last month to 40 mg daily.

I had my labs done this week, and my BK urine level dropped from 34k copies to 600, and 100 copies in my blood.

So I got a message today to call her, as the Transplant Surgeon wants to start a 2 week course of Cipro again, and also get labs again in 2 weeks, including a “lymphocyte subset”. I don’t know why, but my first thought was “cancer” (a risk of the Prograf, which is used to suppress my immune system and prevent rejection of the kidney I so love). When I spoke with my TC, she explained that this lab will specifically check my CD4 level, and thus give an idea of the level of suppression. Phew……

My problem is that I analyze too much. There is a risk of achilles tendon rupture with Cipro, and I actually know of a case where a patient was on a prolonged course of Cipro, and this happened. (and no, he/she is NOT one of my case management patients) So, I thought about it, and the risk of tendon rupture (and neuropathy, which I already have), is less to me than the risk of losing my kidney to BK virus.

As the field of BK virus is still in it’s infancy, there is no standard treatment, but Cipro (and other quinolone antibiotics) are used successfully; Leflunomide also seems to suppress the virus as well. since this virus is dormant in the urinary tract for life (similar to the chicken pox virus being dormant in nerve tracts for life), I will never get rid of it, but hopefully will be able to suppress it into dormancy.

As for my other labs, that’s a different story. The proverbial black cloud made a visit to me this past week, and among other things, the lab did not collect all of the blood that was ordered. My BUN and creatinine were done, along with my Vitamin D and Lipid panel (all good; creatinine still a 1.1, which is my baseline). They didn’t get a Prograf level, and my BUN/Creatinine were added on after the fact.

As mentioned in my previous post, I started a new job. Same company, but I’m “embedded” now in a Medical Home site, rather than covering for a variety of offices. It’s been tough lately, as we are getting a LOT of new patients, and my caseload is already just about maxed out. I’m working 45-50 hour work weeks; fortunately, I still love my job.

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.

That Pesky BK Virus

July 10, 2011 4 comments

I had my monthly labs this past week, and my creatinine of 1.2 is now back to normal!

The BK virus is another story.  Although still low at 84k copies in my urine, it is up from last months 1,100 copies.  At that time , they had lowered my Prograf dosage to 2mg/1mg (every 12 hours).  At the beginning of June, they resumed the dose of 3mg/2mg that I had been on prior to my hospitalization for the Prograf toxicity/Acute Renal Failure.  This current 84k reading reflects the current dosage, and illustrates how reducing immunosuppression will reduce BK virus.  But balancing immunosuppression and BK virus levels is a tightrope.  Too high a dose of Prograf means elevated BK levels; too low a dose risks rejection of the kidney.  So, as long as my levels of BK stay low, and don’t cause any kidney damage,  I’ll be ok with that.

Despite the problems afterwards, the foot surgery was a definite success.  I finish physical therapy, and although it’s still swollen, I can walk on it without the pain I had prior to surgery (and even prior to the infection).  I saw 6 sthe Orthopedic surgeon this past week, and he is pleased with how it turned out. I did get a peek at the x-ray, and I have 6 screws and 2 plates at the first toe foot bones on the top of my foot, and a 3-4″ threaded bolt going straight up through my heel and (presumably) into either the tibia or fibula (leg bones).  I sure would have liked to see a video of THAT surgery.

I’m still wearing the Bledsoe boot, but was fitted for a shoe insert on Wednesday.  I’m fairly sure that this will be enough support, so that I will no longer need the AFO that goes up to just below my knee, as I used to wear prior to surgery.

Well, I’m almost 6 months into my new job, and I’m just now able to do things without asking questions every 5 minutes. I was very comfortable in my previous job, having done it for 17 years, but this job is definitely more intense.  In addition to the volume of work, I’m also having to learn the adult disease processes, as well how to do case management. There were several nights this week where I came home from work, and after supper, did another 1-2 hours.  But it’s not bad when you have a job that you love.

Getting Back To Status Quo

June 7, 2011 4 comments

I had a transplant surgery appointment yesterday that went very well, and helped clarify some things.  I had been having burning and numbness in my hands, so the doctor wanted to see me. I also met with my new transplant coordinator as well (RN).

I thought the burning and numbness was from the Prograf toxicity, but the doctor told me it wasn’t; only hand tremors are a side effect of that.  Between my email asking about that and my appointment, the symptoms are mostly gone; just some numbness, which could be from my neuropathy.

I had a Prograf level last week, and it was 5.2.  Being that I’m on “monotherapy” for almost 2 years now (they put my CellCept on “hold” because of the BK virus), they want my Prograf level higher, so I’m back on my original dose of 3mg in the morning and 2mg at night; that should bring my level to the 7-8 range, which is where they want it.

When my coordinator looked everything over, she was a little concerned that I had been off of the CellCept for so long, and have been on Leflunomide for quite a while as well.  My surgeon was initially concerned as well (I had been seeing another surgeon for the past few quarterly appointments; it’s a group practice, and they see whoever is on their schedule. Consequently, I had been seeing other surgeons since I had last seen Dr. Varma).

But once they looked everything over, everything looks great.  The Leflunomide is a low dose (20 mg daily), and my liver functions and Leflunomide are all normal.  Ideally, they like to have their patients on Prograf and CellCept, but the treatment for BK virus is to drop the CellCept to get the virus levels down.

Dr. Varma assured me that I’ve “bonded with my kidney”, since I haven’t had any signs of rejection, and Prograf alone in my case is fine.

I thought my urine BK level was 11,000 last week, but I misread it; it’s 1100, which is practically negative!  I have to say that when I saw the level of 912,000 last month, I was worried.

I’ll be drawing another Prograf level and BMP (basic metabolic panel, which includes a creatinine and BUN) on Monday, to check my level after the dose increase, and to check my kidney function.  I felt good leaving the appointment-much more reassured that everything is better now.

I have an appointment on June 17 with the Vascular Surgeon.  I was scheduled for a balloon fistuloplasy in May 2008.  However, I got my transplant a few days before.  I have areas of narrowing in my fistula, so they were going to insert a balloon in it much the same as they open up coronary arteries in a cardiac cath.  But they use IV dye for this, and that could have damaged the new kidney, so they wouldn’t even do it at a later date.

It’s important to keep my fistula, as I may need it some day (hopefully not).  In addition, I draw my labs from it (I inserted my own dialysis needles prior to transplant), and the veins in my other arm are just about shot.  Being that I still get monthly labs, that could create a problem.

As a result of the stenotic areas (narrowings), my fistula has gotten much larger with pseudoaneurysms.  So I’ve decided to see the surgeon to see what he says.  If he doesn’t feel that it needs to be fixed, that’s fine.  But I don’t want to let it go to the point that they can’t fix it.  At least I’ll be “plugged in” with him and can take care of any problems.

This is the radiographic image of my fistula before "ballooning". Note the various segments instead of a continous blood vessel. The areas between the segments are narrowing (stenotic areas) of the blood vessel, which cause enlargement of the areas to the left of the stenosis.

As for my foot, I’m doing great.  I have a Bledsoe boot, and am full weight bearing. I had my first PT appointment today, and have range of motion exercises to do, and eventually will do strenghthening.

Things are looking up.