CHRONIC POSITIVITY – Life with Polycystic Kidney Disease

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.

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……

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 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.

Last week, my ICF (Immune Cell Function) test came back low, meaning over suppression of my immune system, so they cut my CellCept dose.

I just had my weekly labs done today, and my creatinine is stable at 1.2, my hemoglobin went from 11.8 t0 11.9, and my glucose was normal at 98. My Prograf level went from 5.9 to 8.1; not sure why that happened, but I don’t think they’ll mess with that dose just yet, as they want it between 6-8. 

I can’t remember if I already posted this, but my fistula is getting bigger. I have to be careful with using my left arm, as it gets a little sore if I lift too much. I suspect it will have to be tied off at some point in the near future, but once I get 2 more weeks of labs done, my labs will go to every 3 months, so I can handle a handful of blood draws without the fistula. 

My 1st anniversary with my new kidney is rapidly approaching (May 3).

The actual surgery now seems like it was longer ago than it actually was, and dialysis is a distant memory. I think it’s due to feeling so much better, and pretty much being fully recovered from the surgery. I also tend to look forward more than I look back, so that could also explain it.

I really have to remember to continue checking my fistula for the “buzz” (layman’s term for what medical professionals call a “thrill”; there is a palpable  buzz that is felt due to the turbulence caused by the mixing of higher pressure arterial blood and lower pressure venous blood). I did check it yesterday, and it’s fine. I’m hoping to get it stented sometime in August, but haven’t brought that up in a few weeks. I do wonder if they will be able to do the fistulaplasty without dye, because the Transplant Surgeon says ABSOLUTELY NO DYE!!!

My appetite when on dialysis was horrendous; fortunately I could afford to lose weight (although it did affect my nutritional status adversely). I thought that once I got my transplant, my appetite would pick up. However, we went out to dinner Friday night, and I’m not eating much more than I did a few months ago. I’m not complaining, because I would like to get under 200 lbs (in addition to the weight I’ll lose once my native kidneys shrivel up and fade away).  I think my appetite might be due to the fact that I’m drinking so damn much water, that I’m not hungry.

I mentioned to my Nephrologist how amazed and happy I am that after being on BP meds for close to 20 years, I’m finally off of them. I thought after my Gastric Bypass Surgery that I would be off of them, but I wasn’t. I’m thinking now that the hypertension prior to that was weight related, and after that was kidney related. Now that I’m “fixed” from a kidney standpoint, I’m relatively normo-tensive.

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.

The Transplant Nurse called yesterday with my Prograf level: 6.6. It was 3 when I was discharged last Thursday, so it came up nicely. Dr. Maloo does want it in the 8-10 range for the first 3 months, so I will change my dose to 4mg in am and 3mg in pm (had been 3 and 3). So far, no side effects.

I also called and cancelled my appointment for my fistula stenting for tomorrow. Prior to yesterday’s visit, I was adamant that I would not let the doctors “tie it off”, but after talking to Dr. Maloo, and having the explanation of it being a “high flow fistula”, and potentially causing heart problems down the road, I’m a lot more open to having it tied off in the future. I’m sure my right arm is out for a fistula if I need one in the distant future, but there’s always my legs (my mom had grafts in both legs when she was on dialysis).

One of the nurses in clinic yesterday was telling me of an 80 year old man that had a kidney transplant that lasted 27 years, and for a good number of years, had not taken ANY immunosuppressants! Of course, he’s on dialysis now. If I could get 27 years out of this one, I’ll be thrilled. I’d be in my early 70′s at that point.

My bp is creeping upwards. Last Friday, it was 132/64; today it is 138/78. Something to watch, but not really worry about. I will probably have to start on BP meds again, but what’s one more pill? Besides, if they put me on an ACE Inhibitor, they protect the kidneys, so that won’t be all that bad (e.g. Lisinopril). Up until about 3 months ago, I had been on BP meds for almost 20 years.

Yesterday, for the first time, my output (2900 cc) exceeded my input (2740 cc).

I think I might have had some damage to my shoulder in the OR. Every morning when I wake up, my right shoulder has a significant ache. This is the arm that I had the arterial line in my armpit; did they have my right arm extended out for too long? Rotator cuff injury? I’m not planning on making a big issue of it, but hopefully it will resolve.

Yesterday morning (actually, in the middle of the night), I stumbled into the bathroom, and as I was standing in front of the toilet, I heard a noise, and then saw the shower curtain move. Digger, our GoldenDoodle, was sleeping in the bathtub again, stepped out of the tub, and went into his crate to finish off the night!