Transplant Day 43

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.

 

Transplant Day 41

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.

 

Labs from June 11

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.

Transplant Day 39

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.

Transplant Day 37

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.

Transplant Day 36, 2000+ Hits!

No more pain from the cystoscopy/stent removal. In regards to med side effects, I’m sleeping OK, the diarrhea is controlled (I increased my fiber, and that seems to help), but the hand tremors (from Prograf) are still somewhat bothersome, especially after my am dose (I take 3mg in the am, and 2mg in the pm). But again, I’ll take the minor annoyances over kidney failure any day. My weight seems to be hanging around 207 lbs, when just last week it was around 209, so that’s an improvement.

Oh, I forgot about another side effect: bruising from aspirin (a.k.a. ASA). Friday, I was walking in our hallway in bare feet, and stubbed my toe on a throw rug (not at all uncommon with CMT). By yesterday, I had a nice bruise (as well as pain and swelling). I posted a pic at the end of this post; you can also see the characteristic “hammer toes” as a result of the neuropathy.

 My blog hit 2000+ hits sometime Saturday afternoon. Not bad for being up less than 2 months (not sure how many my LiveJournal blog has, because  LJ doesn’t offer the blog stats option).

I found an interesting blog entry from Fabius Maximus on the economy: When Did Dude Predict A Recession?

This is a clickable thumbnail; the larger pic isn’t focused very well, because of my hand tremors, but this gives a pretty good indication of the bruise.  

Transplant Day 35

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.

 

Transplant Day 34

I just got back from my appointments at Geisinger. I’m now tanked up with Venofer (Iron), and feel like I’m peeing needles after having a cystoscopy to remove my stent. When I had my transplant, they put a green rubber stent between the bladder and kidney, and today it was removed.  It was uncomfortable, but not terrible, but since it’s a potential source of infection, I’m glad to get it out. The Venofer was given via my fistula, so I only had 1 needle stick.

I definitely have to work on increasing my fluid intake this weekend, as it’s already triple H around here (hazy, hot, and humid). 

My weight is down, and my BP is down as well. It’s hitting the 50’s on the bottom, so I’ll have to watch that closely.

 

Transplant Day 33

Another status quo day yesterday. Peeing well, pretty much pain free, I’m relatively active, and feel fine.

My weight is stable for the 4th day in a row, as is my BP and temp. Stools still loose, but tolerable. I did have the sensation of something in both eyes last night at bedtime, so I took an Allegra. Not sure what it was, but it’s resolved this morning.

My labs aren’t all back yet; the Prograf level will probably be run later this morning, so I have an email in to the transplant nurse to email me the results. I really like having this ability. It’s all done through a secure website, and I get a “tickler” email through my regular account telling me I have a message. I can also request, confirm, or cancel appointments, reorder prescriptions, view labs (although only after the doctor electronically signs off on them), request advice, check my immunizations, etc.

My other blog is doing well (as is the rest of the site). I’ve only done 2 posts so far (I’m working on a new one for tonight), but have had a decent amount of “hits”. As for my WordPress blog, I will probably hit 2000 views since starting it on April 17.

Transplant Day 32, New Blog

Not much new as far as the transplant; everything is status quo (which is good).  Vitals are all stable, and I managed to get more fluid in yesterday. My urine hasn’t caught up yet, as I think I might be on the dry side; it’s a darker amber color, so I need to take in even more today.

I slept well last night, and no more GI issues from the CellCept.  I had weekly lab work today at the local Geisinger clinic, but the results won’t be back until tomorrow.  Next week, I have a screening for BK virus, which I’ll explain further below.

I received material from Roche Pharmaceuticals, manufacturer of CellCept. They put together an excellent booklet titled “New Beginnings Wellness Guide”. There are easy to understand explanations on many aspects of transplant. One of the pages discusses “Getting To Know Germs”. Sounds boring, but with a suppressed immune system, it’s important. The 2 main virus groups that are a concern are the Herpes Family of Viruses and the Polyoma Family.

Herpes isn’t just an STD (Herpes Type 2). There are 8 different herpes viruses that infect humans, including those that cause chicken pox, mono ( caused by Cyto Megalo Virus and Epstein Barr Virus), shingles (the same that causes chicken pox), and cold sores (Type 1).  Infection/reinfection with these viruses can cause serious problems when immunosuppressed, including rejection, cancer (Lymphoma), or major complications with various organ systems. In my case, my donor was CMV + and I was CMV -. I currently take Valcyte to prevent CMV. My dose is higher (900 mg daily) due to me being CMV -. 

As for the Polyoma family, the BK virus is the one of concern.  By the age of 12, 90% of all Americans have been infected with BK. For someone with a healthy immune system, it’s not a concern. But when the immune system is suppressed, it can cause kidney damage/failure. The treatment is to change around the immunosuppressant meds and lower the level of immune suppression to the point that the transplant will not reject, and the immune system is able to fight off BK.  

I’m up and running on my other blog now at MyKidney.com.  This is a site that eventually will include multiple bloggers at various stages of CKD (Chronic Kidney Disease); I’m blogging as a new transplantee. As of now, there is me, Krissi (who runs the site, and had a transplant from her brother last year), and Elizabeth, who is currently on hemodialysis and awaiting a blue sequined kidney 🙂 . I have done 2 posts so far, and the second post is on an interesting subject. The LA Times reported on 4 Japanese gangsters getting liver transplants at UCLA, which meant that AMERICANS awaiting livers were passed by at least 4 times. Check it out here.