CHRONIC POSITIVITY – Life with Polycystic Kidney Disease

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.

Conventional wisdom has it, that outside of Philly and Pittsburgh, Barack Obama will have a tough time in Pennsylvania (ala “they cling to guns or religion or antipathy toward people who aren’t like them”). But if these pictures are any indication, he may very well have the Pennsylvania Amish vote locked in.

(click on thumbnails to enlarge)

In other political news, one of our local radio talk show hosts received a death threat. Steve Corbett, an ardent Hillary supporter, has voiced his support over the airwaves, and has apparently pissed off some Barack Obama supporters. The threat, received in an email sent through barackobama.com, states “We will kill you when Obama become PRESIDENT OF USA. You would see!!!” (of course, it’s unknown who sent the email at this point; if/when the FBI get involved, I’m sure it won’t be long until it is known)

Conventional wisdom has it, that outside of Philly and Pittsburgh, Barack Obama will have a tough time in Pennsylvania (ala “they cling to guns or religion or antipathy toward people who aren’t like them”). But if these pictures are any indication, he may very well have the Pennsylvania Amish vote locked in.

(click on thumbnails to enlarge)

In other political news, one of our local radio talk show hosts received a death threat.  Steve Corbett, an ardent Hillary supporter, has voiced his support over the airwaves, and has apparently pissed off some Barack Obama supporters.  The threat, received in an email sent through barackobama.com, states “We will kill you when Obama become PRESIDENT OF USA. You would see!!!” (of course, it’s unknown who sent the email at this point; if/when the FBI get involved, I’m sure it won’t be long until it is known)

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.

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.

I got a call on my Prograf/FK-506 level, and it’s too low; 5.1 (the goal at this point is a level between 8-10).  That sure would explain the drop in creatinine from 1.4 to the current 1.2 (I was told that my creatinine will probably drop some when they ease up on my immunosuppressants over the next few months).

Interestingly, the Transplant Nurse was talking about how some patients cheat on their immunosuppressant meds. They don’t take them for a while, and then take them 2 days before their labs, and everything looks good, until they end up rejecting. When he called me with my labs, I assured him that I am FANATICAL about taking my meds. They do have a way to detect the cheaters, though. They periodically check an “immune function”; if it’s abnormal (too high?), they know the person is non-compliant.

In my opinion, being non-compliant is in a way unfair to others. If a non-compliant person gets a kidney, and loses it, then someone who would have taken better care of it loses out. I firmly believe that recipients have a DUTY to take care of their transplant as well as they can.

As for the other 2 labs; the CMV level and BK Virus screening, I probably won’t know anything about them until next week.

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.�

Cross-posted on WordPress.

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.

Cross posted at WordPress