CHRONIC POSITIVITY – Life with Polycystic Kidney Disease

My sister is doing better, but has been through a lot.  She is coming up on her 1st anniversary of getting her kidney (April 30), but has had problems afterwards.  Her kidney is working well, but she’s had diarrhea to the point of becoming malnourished.  After the “million dollar workup”, she was found to have gall stones and sludge in her bile duct.  They did an ERCP (a scope inserted down past the stomach and into the bile duct of the gall bladder), and removed the stones and sucked out the “sludge”.  Unfortunately, it didn’t help her appetite, and she worsened.  She ended up in the hospital last week for 3 days with dehydration, they changed her meds around, and she now feels betterher appetite is picking up.  They probably will eventually take the gall bladder out, but with her nutritional status, it’s too dangerous now, as she wouldn’t heal properly.

For those who post comments, keep them coming. I’m also a little late approving them, but I did just approve those that were pending.

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.

As many of my readers know, I work in a large Pediatric clinic, and we share space with a Family Practice clinic.

Yesterday, one of my Family Practice co-workers asked me to speak to a 70 year old gentleman who has many health problems, who is “considering” getting a fistula for dialysis.  He’s ruled out getting a transplant, although he tells me his Nephrologist is encouraging him to do so.

I say considering, because he’s very down and discouraged over his overall situation.  He tells me that he had a quadruple bypass 2 years ago, and told me he will no longer shoot his shotgun because he’s afraid his sternum will rip open at the surgical site from 2 years ago (it won’t; they wire it shut, and the bones are already healed).  He has vision problems, and nerve damage to his non-dominant arm from the surgery.  His wife of 52 years was with him, and her eyes were red (I assume from crying).

I explained what a fistula is and why he needs one; a catheter is a poor choice for dialysis and only used as a temporary fix or as a last resort.  Of course, I was upbeat about the process,  as I truly believe that he will feel so much better once he starts dialysis (he didn’t say at what point he is at with his kidney failure). Compared to my other surgeries, fistula surgery was not that big a deal, as it didn’t even require general anesthesia for me; I stopped at McDonalds for lunch on the way home from the hospital.

Granted, dialysis is no walk in the park, but it sure beats the alternative.  During my 9 months on dialysis, I saw a wide spectrum of reactions to dialysis, just as there is a spectrum of how people deal with day to day life. For me, dialysis allowed me to feel SO much better, so it helped me greatly (and the transplant had exponentially even more of an effect).

I’ve had my share of medical “speed bumps”, but as you know, I’ve used my attitude and determination to overcome them. I have pain every day from neuropathy (hereditary), but don’t even think about, and rarely take pain meds (unless it gets bad)

But I could tell he’s a long way off from “believing”.   I do think that our talk did help his wife somewhat, and told both of them not to hesitate to contact me if they had any questions or needed to talk.
So for those of you who tend to have a bleak outlook, just remind yourself,  as I always do:  there is always someone worse off than yourself.  If I were this gentleman, I would be thinking of the people who go through life paralyzed, who have terminal cancer, who have mental illness that makes them outcasts in society through no fault of their own…

The key to dealing with chronic illness, enjoyment of day to day living, and survival is to be positive.  It’s an attitude that’s sometimes difficult to maintain at times, but one worth striving for.

Note: I met this gentleman not in the course of work, (I was never involved in his care, as I work in Pediatrics) and am not disclosing his name, so I feel comfortable that I am not breaching confidentiality, and only know the details above based on what he and his wife told me. I wish them both well.

I spoke with Kim today, my Transplant Coordinator, and my BK Virus levels have come down!

I just finished a 10 day course of Cipro, due to my BK levels rising (my CellCept has been on “hold” since July(?),  and I’m only on Prograf for now). Cipro is believed to reduce viral replication, so it is being used by some Transplant Centers for BK reactivation. (BK virus is a virus found in 80% of the population, and only “flares up” with immunosuppression)

Last month, my serum (blood) level of BK Virus had increased to 2500.  Now, I’m down to 800 copies of virus, and 226,o00 in my urine.  I haven’t had a urine BK done in several months, and at the time, I was told it was >39 million copies.  The nurse today told me it had been 739 million copies.  Anyway, it’s decreased, and that’s all that matters.  I’m getting another level in a month (blood only, since it’s in the urine first, and then the blood), so hopefully it will go down further.

I must admit that I got a little freaked this week, because I started reading too much.  Keeping it in perspective, most of the articles are on patients who already have Nephropathy (kidney damage) from the virus; as far as I know, I don’t have any damage from it.  I believe it was caught early; thank God that my Transplant Surgeons are compulsive, and screen for it every few months.

My Transplant Coordinator said that any of the treatments are pretty much guess work; some docs feel that the Cipro doesn’t do anything, and some feel it helps.  Apparently,  it worked for me, since this is the first month in the past 3 that the levels went down, and that was significantly (close to 70% reduction of the virus in my blood).

My creatinine remains at 1.2 (my baseline since transplant), and everything else looks good as well.

I had my yearly skin cancer screening with the Dermatologist, and didn’t have to have any moles removed.  She did freak out a little when she saw my foot, though.  My hereditary neuropathy (Charcot Marie Tooth) causes degeneration of the muscles and nerves in my arms and legs.  I wear hard plastic orthotics that keep my foot from dropping, and allow me to walk with confidence.  When I don’t wear them, I’m very tentative with walking, as my foot will drop without me knowing, and I’ll trip and end up on the floor.  Years ago, I fractured the outside bone on my left foot, and there is a protrusion from the healed callous on the bone.  Since my foot tends to have a lot of pressure on the outsides, I have a thick skin callous there on top of the bone callous.  The problem is that I have no sensation in the foot, and am at risk for an ulcer (similar to a diabetic).  She wants me to see the Orthopedic Surgeon to fix this, but after talking to my PCP, I decided I don’t want foot surgery.  So I’ll call the guy who made my orthotics, and see if he can come up with a solution.

Keeping with the “Chronic Positivity” theme of this blog, I want to congratulate a young woman named Tedesha, who will graduate from college this month. I met her at our clinic 7+ years ago, when she came from outside the country to get treated for the first time for a devastating Dermatologic illness called Epidermolysis  Bullosa. She’s blind from the disease, so she deserves a lot of credit for overcoming a lot of adversity.  (I had an update by the staff Dermatologist at my appointment)

Merry Christmas and Happy Holidays!

I had my monthly labs this week, and the level of BK virus in my blood has increased the past 2 times.  It started out at a level of 7200 this summer, reached it’s lowest in September at 961, was 1200 last month, and on Tuesday it is 2500.

The Transplant Nurse called me today, and I’ll start on a 10 day course of Cipro.  Even though Cipro is an antibacterial, and BK is a virus, the Cipro has the effect of inhibiting viral replication (the process of a virus making copies of itself).  I will have both my blood and urine levels checked in 2 weeks again, and hopefully, the level of virus will decrease.

My other labs are good. My creatinine is still 1.2, and my Prograf level is 9.5 (expected range 6-9).  Even though it’s a bit high, it’s acceptable, and they probably are keeping me on the high side, since I’m temporarily off CellCept.

If the Cipro doesn’t work, my guess is that I will then be put on Leflunomide.

The BK isn’t a major problem at this point, as it was caught early, and my kidney function (creatinine) is unchanged. I haven’t had a renal biopsy yet, and am not sure if that’s in my near future; it hasn’t been mentioned.

I’ve managed to survive Swine Flu season without getting the flu.  The only infection I’ve had is a mild cold, and didn’t even get a fever.

I added a new blog to my Blogroll, Because I Can.  It’s the ongoing story of Ashley Baltazar, a 19 year old with Polycystic Kidney Disease who developed a brain aneurysm near her brain stem. It’s written by Lori Schneider, a features editor for a local community newspaper.  Lori is chronicling Ashley’s long journey through this devastating struggle via the blog, and she is also in the process of writing a book about Ashley.

For those who aren’t aware of the various complications with PKD, brain aneurysm is one of them.  They are usually familial and occur in up to 10% of PKD patients.  Other issues include diverticulosis, kidney stones, hypertension, abnormal heart valves, and liver and pancreatic cysts.

I had my quarterly appointments with the Transplant Surgeon and Transplant Nephrologist this past week.

The Surgeon was pleased overall.  My creatinine is rock stable at 1.1, my hemoglobin, although still low (I don’t think it will ever be normal), is up from 12.7 to 13.5, and my Prograf level is at 9.5 (still on the high side, but lower than last month’s 9.9).

He also noticed my dialysis fistula, as it’s quite huge.  The other Transplant Surgeon is the one who “specializes” in these, and told me that as long as it isn’t bothering me, he wouldn’t do anything with it, as I asked to keep it for as long as I could.  Not because I plan on going back on dialysis, but because I use it to draw my own blood each month, as the veins in the other arm are crappy. When I do get it “tied off” (it is created by joining an artery and a vein side by side; the arterial pressure enlargens the vein, allowing a large needle to be used for dialysis), I will need to have the vein removed.

The only downside in my labs is the level of BK virus in my blood.  It rose from the 900 level to 1200 this month.  Still not bad, and like anything, there could be fluctuations from time to time.  In conjunction with that, my ICF (Immune Cell Function) is up to expected range of 250.  3 months ago it was 112, which is low, and indicates over-suppression (which allows opportunistic infections such as BK virus to potentially worsen).  Labs again next month; we’ll see than.

The appointment with the Transplant Nephrologist was just a “hi, how are you doing, everything looks good,  see you in 3 months” visit. (although we did chat about non-medical things)

I’ve made the decision to get the Swine Flu vaccine.   I did ask the Transplant Coordinator (RN) what the recommendation is, and the answer she gave me was non-committal.  The bottom line is that whatever we do is our decision.  For me, that’s no problem, but I think they should provide better guidance, as many patients don’t have the knowledge base to make an informed decision on it (I don’t say that demeaningly)

Judging from the phone calls I take at work from worried and confused parents, not only is there an overwhelming amount of information on Swine Flu vaccine, and quite a bit is misinformation.  I do my best to give them the information available, and help them to sort things out.

Back to my decision, if I were to get Swine Flu, it could be more serious due to being immunocompromised, as well as having a chronic neuromuscular disorder.  I have a higher probability of infection as well, given that I work as a nurse and am thus exposed to it more  (although I’m diligent with handwashing and using a mask when needed).

The Swine Flu infection has thus far proven to be fairly benign, based on what I see clinically in our outpatient Pediatric Clinic, but the virus can always mutate, and become more virulent.  Granted, the vaccine wouldn’t be composed of the mutated strain, but there’s a possibility (theoretically)  that it could provide some cross protection.  The Swine Flu virus is comp0sed of 3 different influenzas: swine (pig flu), human, and avian (bird flu). It’s that last one that’s particularly scary.

As I understand it, the Swine Flu vaccine is the same base vaccine as that for Seasonal Flu (there is now a Seasonal Flu vaccine shortage as they had to suspend production to switch over to producing Swine Flu vaccine).  I’ve gotten Seasonal Flu vaccine for years now, and never had a problem. The difference between the 2 is strictly the difference in strains of influenza that it contains. If you do decide to get it and have a chronic illness, be sure to get the injectable vaccine;   the nasal spray vaccine (FluMist) contains a live virus.

Last weekend, I worked a double shift in the hospital; it took 2 days to recover!  Anyway, one of my patients was an infant who had congenital blindness, but also newly diagnosed chronic renal failure.   Amazingly, she survived a potassium level of 9.2!  It was found on a routine screening lab by an eye doctor. When Jackie and I took my sister to the Emergency Department for weakness, she had a potassium of 7.3, and was in complete heart block (the electrical signals to the heart weren’t able to fire right due to the high potassium), and probably almost coded.  They had the external pacer pads attached to her, the code cart in the room, and she had to have emergency dialysis.   That just goes to show how resilient kids can be.

I had lab work done last week, but just got the remaining results today.

The level of BK Virus in my blood continues to drop.  It started at 7,260 copies in July, and after stopping CellCept at that point, was 2,257 in August, and this month there are 961 copies.

My cholesterol is 156, but I need to get my HDL up, as it’s low.  My Prograf level is elevated at 9.9.  I’ve asked several nurses and doctors what the level is, and I get different answers.  The doctor told me 6-8, but the nurse today told me 6-9.  I’m going to hold off on more blood work for now, and discuss it with the Transplant Surgeon at my appointment next month.

I had been exercising daily up until my episode of phlebitis in July.  I’ve really cut back since then, hence the low HDL.  I started back up this week by riding my recumbent bike, and then will get back to walking again.

You may have noticed the SiteMeter map on the sidebar.  I get various statistics on visitors (I use the free version), and it’s interesting to see the locations of some of my visitors.  Other countries include (in the last 100 visits) Netherlands, Peru, UK (several different locations), Costa Rica, India, and Jamaica.

It’s been a strange week alright.

Yesterday, I worked an overtime shift in the Childrens Hospital-my full time job is in a Peds clinic. I was talking to a doctor I hadn’t seen in awhile out in the hall, and then entered the room of one of my patients to check on her.  Her mother said to me “That’s Dr. R.  He was my doctor when I was 9 years old.  I had meningococcal meningitis, and was in the hospital for a month.  My brother had it too, but he died”. I asked her if her brother’s name was Paul, and sure enough, it was.

It was 13 years ago and I was working in the clinic evening shift on a Friday in July, when an adolescent came in to be checked out (we have a lot of patients referred to us for acute care problems, as well are open 7 days a week as well as evenings, and we are on the campus of a large medical center).  The story was that his sister was in the Peds ICU with suspected meningococcal meningitis. He was mentally delayed, and without knowing a baseline, it was initially difficult to get a good read on his neurological status, but that changed quickly.  I had a difficult time drawing his blood (I’m usually very good at that), because his blood pressure was lowering.  We did a spinal tap, and in the short time he was in the clinic, he became more drowsy, and upon leaving, he started with petechiae and had a BP of 70′s/30′s.  He had meningococcal meningitis and sepsis (bacteria in his bloodstream).  He died early Sunday morning.

The 2nd “small world” incident was through my wife Jackie.  In order to understand this one, I’ll explain my transplant.

The transplant coordinator called me on a Friday night with an offer for a kidney (my 7th such call).  The only information I got was that a 16 year old girl had been on life support for a drug overdose, and had been in a long term treatment facility for adolescents with substance abuse problems.  (he also gave me other info, such as that her labs were good, etc).  I accepted the offer, and had the transplant the next evening after dialysis.

When Jackie was making phone calls to tell everyone the happy news, my roommate from college told her that there was an article about this incident in the local  newspaper (he was home visiting his family).  It gave other details, such as the specific company whose facility she was in, and what had happened (her and another girl were taken to the dentist, the worker taking them had a bottle of pain killers in her purse, they stole them, took the pills when they got back, were found barely breathing, and taken to the hospital).

Jackie is a Special Ed teacher, and she has an aide in her classroom that was recently hired.  On Friday, he was telling her who he previously worked for, and she mentioned to him about my transplant, as well as the circumstances behind it.  Here, he was working in the same group home at the same time that my donor was there, and apparently heard that her organs were donated (but obviously didn’t know to whom).

The right place, the right time, and the right conversations lead to these “small worlds”.  What are the chances?

(I changed the patient’s name to breach of confidentiality)

My wife Jackie and I were talking about the past 10 years and what has happened to her career-wise.

We met in a Psychiatric Hospital (we worked there), and at the time, she had an undergrad degree in Psychology, and was completing a graduate degree in Elementary Education.  She completed it, but in our area, teaching jobs are difficult to obtain based on one’s merits and abilities.  If you are willing to pay a bribe, or are politically “connected”, it’s possible to get a job, but otherwise, it’s not likely to get a full time position.

We got married, eventually moved to our current home, and she got a position as a Mobile Therapist and then as a counselor working with children.  That job led to another position as a quasi-Social Worker in our school district.  After 8 years, the school cancelled the contract of her employer, in order to hire more guidance counselors to do the work she and her co-workers had done. As an aside, and keeping with the rampant nepotism of the area, the guidance counselors were all in one way or another related to school district administrators, and costing the district much more than the contract they cancelled.

From there, she began substitute teaching.  The work wasn’t steady, and it was far from the ideal job, but she did what she had to, in hopes of somehow getting a full time teaching job.

She did this for 2 years, and then landed a job in the district teaching Alternative Education.  For those unfamiliar with this, Alternative Ed is a fancy name for a classroom used to place students that were simply unmanageable in a regular classroom.  She was experienced enough to handle this well, as she had worked with these types of students at the Psych Hospital we worked at.  Of course, while the “contracted” teachers received full pay and benefits, she was hired without a contract, and at a daily rate that was slightly higher than that of a contracted teacher, and didn’t receive any benefits. On top of that, the classroom was in a trailer, and the administrators had the attitude “out of sight, out of mind”.

It wasn’t the safest job, as the students were sometimes physically aggressive. She was subpoened to court twice because of arrests of her students related to things they did in the classroom that ended up in charges, and the school district wasn’t even going to pay her for the court appearances.

After 3 years, the district pulled another fast one, changed the job description in order to hire someone who apparently had “connections” (she lasted a year), and she was once again unemployed.

After 2 job losses within 5 years, she was very disheartened.  In addition to this, she was also dealing with me going through my kidney failure, dialysis, and eventual transplant.  I’m sure my readers who have experienced this with themselves or a family member can fully appreciate this stress.  But she was fortunate to get a summer job for a private provider of Mental Health and Special Education services, and that lead to a position as an assistant in an autism classroom (it was a position above an aide but below a teacher).  That was a year ago, and late last Fall, a teaching position opened.  She doesn’t have Special Education certification, but her supervisor hired her with the understanding that she would get certification.

So, in January, she started graduate classes to get her Special Ed certification, and was hired for the middle school Emotional Support class.

The certification will only require 6 classes (since she already has a M.S. in Education), and she’ll be certified at the beginning of the 2010-11 school year.

Now, she’s working at a private school, she’ll have her Special Ed certification at this time next year, and the salary she is making is the same as a teaching job in the school district that axed her job twice.

We were talking about this last night, and in retrospect, the best thing that happened to her was losing her job.  She persisted, and ended up landing a job that she loves.

The lesson here is the title of this post; it’s always darkest before the dawn.

Remembering back to when I was first diagnosed with Polycystic Kidney Disease, I experienced similar despair to what  Jackie did when she lost her jobs.  Based on what I saw my mother go through 30 years ago when she was on dialysis, my mood at the time was doom and gloom.  My mom was on dialysis for 3-1/2 years, had a very rough time throughout those years, and died of peritonitis related to surgery to remove her spleen as well as her kidneys (from what I can gather, the splenectomy was due to a problem with aplastic anemia, and the kidney removal was to prepare her for an eventual kidney transplant).  In addition, dialysis wasn’t nearly as advanced as today, and she would be in bed sick with nausea the day after dialysis, and “perk up” right before the next treatment.  This was probably due to the fact that back then, they only used an “acid bath” with dialysis treatments, causing acidosis; today, modern dialysis uses an acid and a base bath, which does away with this problem.

And yet as my kidney failure progressed, I kept on going, continued working full time even through dialysis, and although I had some rough periods, I persisted as well.  I put off dialysis until I had a kidney cyst rupture, causing my BUN to shoot up to 118, and was forced to start dialysis at this point.  My BUN was 80-90 for about a year prior to dialysis, and my GFR (percentage of kidney function) during that time was 8-10%.

And here I am today, living life with a kidney transplant, and having to remind myself that I actually had a transplant.  The reason I say this is that today, I feel 10 years younger than I did at the point I went on dialysis. When I was going through all of this, I was fortunate enough to be able to block out my initial apprehensions, and today, I’m thankful for treatment I received that allowed me to do so.

I probably will have more speed bumps along the way, but I’ve handled those that were thrown in front of me, and will likely be able to drive over those as I’ve done in the past.

Some readers of this blog are probably newly diagnosed with kidney disease, some are facing dialysis, some have chosen to remain on dialysis rather than transplant, some are awaiting a transplant, and others have gone through a transplant.  In my opinion, attitude and persistance can overcome a lot of what we have thrown at us, and I hope that for all of those that are in a position of facing challenges, that they do their best to look at the good, and do your best to overcome the bad.

As many of you transplantees may already know, CellCept is now available in generic, and Prograf has lost patent protection (although I’m not aware of any generic versions yet; correct me if I’m wrong).

I discussed this with my transplant surgeon at my last appointment (BEFORE I found out I had BK virus and was taken off CellCept). He said he preferred me to take brand CellCept, but that if my insurance didn’t cover it, I’d have to take generic.  I pressed him as to whether there is an appreciable difference between brand and generic, and he eventually said “no”, but that he preferred I’d take the brand.  (huh?)

I discussed this with a pharmacist I work with, and he explained that in some drugs, if there’s a narrow therapuetic index (the difference between therapuetic and toxic), then it may be an issue, but with CellCept, it shouldn’t be an issue.  (I hope I got that right)

Anyway, I had read somewhere on an internet forum that there may be up to 15% variability between brand and generic as allowed by the FDA, but this is apparently FALSE. Given that there is only a low single digit difference between the 2, it’s not a concern, especially as there are OTHER factors with absorption, such as interference from foods and minerals. In other words, your drug levels will be pretty close each time you take a med, but never exactly the same.

I plan on taking generic when I’m back on CellCept.  My rationale:

• My insurance has a “lifetime limit” of drug coverage. By taking the lower priced med, I will reach that later rather than sooner
• I have periodic ICF’s (Immune Cell Function) done; this should pick up on any problems

For those who will stay on brand CellCept, here is a link to some help with co-pays (unless you are on Medicare or Medicaid):  click on “Click here for details” at the CellCept for Living website.

For those on Prograf, check out the Prograf Value Card program.

Thoughts on this?