CHRONIC POSITIVITY – Life with Polycystic Kidney Disease

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.

I’ve been fairly busy this week, with going back to work, finishing some odds and ends, etc., so I haven’t been updating my “Daily Vital Signs” page. I did do that today. My BP has been decent, weight is stable, and no fever. That last one is extremely important, as my blood work yesterday showed Neutropenia (my ANC is 0.88, which would indicate moderate Neutropenia).

I did speak to the Transplant Nurse, and the surgeon is decreasing my Valcyte to 450 mg once a day (it had been twice a day). It will take a little while for my white count to rebound, but if it doesn’t, they will probably start me on Neupogen.

I feel great, except last night, the fact that I’m now back to work full-time apparently caught up to me, because I was asleep by 8pm, and didn’t get up until 6 am today (except for some bathroom breaks).

Another thing I’m not used to is that I make about 4 trips to the bathroom while at work. Of course, I hardly ever used the work bathroom when I was on dialysis.

I can tell a BIG difference in my brain function since returning. I’m no longer “clouded” mentally. Prior to surgery, it was definitely noticeable, and made me frustrated.  Now, I can think so much more clearly.

The “theme of the week” for phone calls seemed to be MRSA, which is Staph bacteria that are resistant to certain medications. I must have had at least 1-2 calls on this each day.  Today, I spoke with the mother of an infant who had a cellulitis and abcess of the buttock from MRSA, and was hospitalized 2 months ago for it. Today, they are out of state, and his leg has a lesion exactly as before, but not yet as bad. So, he earned himself a visit to an out-of-state Emergency Department.

We also had a child admitted to ICU today with a heart rate of 270 and symptomatic. She has SVT. Although we have several admissions to the hospital each week, rarely is it to the PICU. Once they get her heart rate down, I’m sure that she’ll do OK.

I did post on MyKidney about Informed Consent with Transplants. Check it out if you have a minute.

Happy Fourth of July everyone!

Hard to believe, but it’s been 7 weeks since my transplant. I never would have even dreamed I would be feeling this well at this point. Some people still have pain at the transplant site for months after, but I can’t even feel that the kidney is there (although I can see the protrusion a little). I’m finally almost fitting into the pants I wore prior to transplant, so the swelling has noticeably gone down.

When it comes to pizza, this guy is clueless. He’s obviously never been to Old Forge.

Speaking of Old Forge pizza, we went to Revello’s last night. Yum!

Not that we do it often, but when we go out for steak, our favorite chain restaurant for that is Texas Roadhouse. The next time we go, I’ll be sure not to send my steak back…

If actions are truly louder than words, then Al Gore has proven that man-made global warming is a bunch of bunk.  His home’s energy use has increased 10% in the last year. Of course, there is ALWAYS an excuse when the hypocrisy of these nanny-staters is brought to light. The response is that he uses “GREEN” power, so that’s OK. But doesn’t he say that we all should cut down our energy use? The average US home uses 11,400 kWh per year, yet his abode uses an average of 17,768 kWh per MONTH. Hey, I don’t care how much he uses, except for the fact that he expects everyone but HIMSELF to decrease their energy usage. Since he is using so much energy, maybe a new nuke plant in his neighborhood is in order; after all, nuclear energy is carbonless, so it’s GREEN energy…

I’m doing well this week. It’s killing me that it’s so nice outside, yet I can’t do any yard work (due to mold spores in the soil).  Yesterday, though, I did trim some branches from the tree in our front yard with Kevin’s help.

I got my labs back late yesterday, but I didn’t post until I heard back from the nurse today regarding my Prograf (FK-506) level.  My labs continue to be stable. My Prograf is up to 7.1 (from 5.1 last week; I increased my dose by 1 mg daily). I thought they wanted it up to 8-10, but they are OK with the 7.1. My creatinine is still down to 1.2 (awesome!), my glucose was low at 63, but I hadn’t eaten prior to my labs, and my calcium is up to 9 (I’m now taking Citrical). Speaking of which, my GI/Bariatric doc advises Calcium Citrate over Calcium Carbonate, as it’s more easily absorbed. WonderLabs has decent pricing on Calcium Citrate in various doses and combinations with other vitamins/minerals.

As for my blood count, it’s stable. My white count is still predictably low, my hemoglobin and hematocrit are the same. I’m amazed that with a hemoglobin of 9.5 that I’m not tired. That says a lot for how tired I was from the kidney failure.

When I messaged the nurse yesterday to get my labs, I also asked about my PPD. That’s a shot they do to screen for Tuberculosis. I get one yearly for both my full-time and weekend nursing jobs. The weekend employer is particularly adamant about having this done on time (and rightfully so). Anyway, I wanted to know if I could get a PPD, or if they could use the x-ray done after my IV line was placed in my neck prior to surgery.

The response from the nurse?  “I will check with the docs and get back to you. We do not have many patients as anal as you! ”   I’ll take that as a compliment!

I’ve had several interesting search engine queries that lead to my blog; looks like it’s soon time for another Searches That Pointed To My Blog  post.

For those that want to email me, here is my address (it’s a graphic rather than text so that I can avoid bots snagging my address):

 I had my weekly labs today, but won’t get the results until tomorrow. Based on the fact that I have more noticeable hand tremors, I assume my Prograf level is more towards therapeutic than last week. Other than that, my weight is stable, BP is good, and my urine output is still at least 100cc/hour on average.

There is a potential (key word here) treatment for Polycystic Kidney Disease that may involve a drug used to treat Rheumatoid Arthiritis (Enbrel, which I am very familiar with as I work with a Pediatric Rheumatologist). Of course, this is research that has not progressed to humans, so it may be a while to see if it pans out. But it’s a start…

Tonight is a “solstice moon”. This low-hanging moon will appear huge. Hopefully, the sky will be clear enough for you to see this. Explanation here.

I’ll post my labs tomorrow.

Everything is going well. I’m managing to take in more fluids, I’m eating well (but not TOO much), and my urine output is great.

I received an email today with a link to a newsletter from the UK. The PKD Charity in the United Kingdom puts out a newsletter, and did a story about me when I was on dialysis. They actually took excerpts from my LiveJournal blog, and posted them in the newsletter.  The newsletter is well done, and addresses important issues such as pain control (a “hot topic” with PKD), PKD and pregnancy, a theory regarding water and PKD (Polycystic Kidney Disease),  and other articles.

I read some sad and infuriating news about a blogger named Matt, who had a kidney transplant several years ago, has been off of work (FMLA leave) due to some major edema and rashes, and found out that he was fired from his job.  Not only did no one tell him he was fired, but they also cancelled his health insurance, which is how he found out about the firing. He seems to be taking it a lot better than I would, but the commenters on his post were of the same mindset as me; what his employer did sucked.

I’ve always said that I am very fortunate at my job. My supervisors and co-workers have bent over backwards for me through all of this, and I very much appreciate that.

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.

I changed my meds around a little bit. Being that the calcium, multivitamin, and magnesium have the potential to block absorption of some meds, I take them at noon and at bedtime. My other meds are at 8a and 8p. Before, I was taking 2 Citracal tabs (calcium) at lunch, but now, I take 1 at lunch and the other at bed. I moved my Prilosec to 8p, but still take my aspirin at bedtime. That’s about the most exciting thing that’s happened recently :)

It’s definitely getting to be “back to work time”. When I had my emergency brain surgery for a subdural hematoma back in September 2005, the Neurosurgeon wanted me to be out of work for 6 weeks, but I was able to convince his PA that I was OK after 4 weeks, so I returned then (and I WAS ready and able at that point). The reason I now say I’m ready is because I am starting to go “stir crazy”, and my days are not as structured as they were even a week ago (in other words, I’m getting lazy). Going back to work will at least give me some structure (I’m not TOO obsessive compulsive, am I?).

I’ve managed to get in more fluids today; it’s hot here, and getting more humid, but not as bad as earlier in the week.

I’m trying to be more aware of everyday sources for potential infection. The one thing I’ve been doing is to put the sponge in the microwave for 2 minutes each day after I wash out my breakfast dishes. Sponges are a wealth of bacteria (and probably other organisms), and I ‘ve read that this helps. I also have been very conscientious about washing my hands more often/using hand sanitizer.

Jackie got a little freaked out today regarding infection. She is working at a summer “camp” (although it’s more of a summer school program) for kids with autism and behavioral problems. She found out today that one of the children has TB and Hepatitis B. I told her not to worry; the State Health Department of Health would not allow someone with active TB to be in a public setting, and she has at least partial protection with the Hep B vaccine for that disease.  She just has to be sure not to touch any blood (which is how Heb B is transmitted).

I’ve been driving now for the past few days, and it’s done a lot to help me out mentally; I don’t have the “post op” frame of mind anymore; just another step to getting things back to normal.

Kevin and I just got back from my bi-weekly appointments with the Transplant Surgeon and Transplant Nephrologist.

I started out having labs drawn, we then went to breakfast, and then up to see the nurse and doctors. Everything is going GREAT. My creatinine is 1.2, and my kidney function is above 60%! (they don’t quantify above that; anything over 60% is considered normal)  I looked back at my labs, and was able to track my creatinine back to April 2000; at that point, it was 1.6. They didn’t start reporting GFR until 2004, and in March of that year, it was 29.2.  This was the first BMP (basic metabolic panel) since the mid-late 1990′s that ALL values were normal.  Dr. Varma, the Transplant Surgeon, had a huge smile, and said that I couldn’t have asked for a better kidney. My Prograf level (FK-506), CMV level (to determine if I have the virus active in my body), and BK Virus screening were not back yet.

Other highlights: I don’t have to return for another 2 weeks (I was told initially I would have appointments WEEKLY for 3 months), I am cleared to drive (WHOPPEE!), and I can return to work sooner than planned (tentatively set for July 7).

The Transplant Nephrologist was also pleased with my progress. I asked about still taking Vitamin D, and he said it was OK, and that he will check a Vitamin D level and PTH in several months.  Also, he will recheck my iron studies to see if I need another IV dose of Venofer.

The Transplant Nurse explained my immunosuppression regime in a little more detail. I follow a kidney transplant group online, and many of the patients report a dose of CellCept of 1000 mg twice daily; mine is 500 mg twice daily. The reason for the lower dose is because they hit me with Campath prior to surgery, which basically wiped out my T cells, and decreases the need for more heavy immunosuppression. I guess it’s a case of a synergistic effect. Using smaller doses of more meds is better than larger doses of less meds.

As things are pretty much stable, I probably won’t blog every day, at least about my transplant. However, I will update my “Vital Signs…” page daily.

I’ve come upon some useful browser add-ons, as well as other software. First, there’s “Slimbrowser”:  It incorporates a large collection of wonderful features like recoverable popup killer, form filler, site group, quick-search, auto login, hidden sites, built-in commands and scripting, online translation, script error suppression, blacklist/whitelist filtering. In plain English, it’s a lean, mean alternative to Internet Explorer, and more secure.

There are several add-ons to it as well. First, there’s Roboform, which incorporates into ALL of your web browsers, and fills in passwords and forms. It’s safe, because you have to log on with a master password to use it. Another worthwhile add-on is Blaze-FTP, which is a free FTP client.

Another add-on that I now use is BlogRovR. It is an online website/application that allows you to centralize the blogs that you read on a regular basis. Unfortunately, it’s only available for Firefox.

I managed to get a little more fluid in yesterday. My weight is down another pound (which is good; my “dry weight” from dialysis was 92.7 kg, so I’m almost down to my pre-op weight). BP is still good, and no fevers yet.

I have my next lab work on Wednesday, as well as appointments with the Surgeon and Nephrologist. 

Last night, I had significant back pain around my waist. I was thinking it might be another cyst rupture, but it resolved within a minute or 2, and hasn’t happened since.  People probably think that since I had a transplant, I shouldn’t have any more issues with my Polycystic Kidney Disease. But I still have both kidneys, so it can happen.

One of the issues faced by patients on immunosuppressants is that of interactions with other meds, herbs and supplements, and even food (the main culprit: grapefruit).  I was surfing around this weekend, and found what seems to be an excellent resource for both transplant patients and non-transplant patients. It’s the Complementary and Alternative Medicine Index by the University of Maryland Medical Center.

I just received access to my employer’s intranet via a VPN (I have some work that I need to do from home). It’s amazing how it works. Being that I can have medical access, the security is extremely stringent. I won’t go into specifics, but I have a username, password, I had to set up a pin, and I also have to use a multi-digit number that changes every minute. I was given an electronic device that provides that number, and it amazes me that it isn’t connected to a network, yet changes by the minute.

We’ve had some stress lately in our house. Jackie has worked as a non-contract Alternative Education teacher for the past 3 school years. She was told by the Superintendent about 2 weeks before school ended that her Middle School position was being combined with the High School position, and that she would need to reapply if she was interested in it (she has glowing letters of recommendation from her supervisors). Rumor has it that the job has already been promised to a phys-ed teacher (who used to play on this district’s football team).  This teacher, who I have known since he was a child, has been out of state teaching for the past several years, has absolutely no Alternative Education experience, and his training did not include classroom teaching as far as I know. I hope it’s not true, but I wouldn’t be surprised if it is.