It looks like I'll be going back to work on June 30. It will be 8 weeks post op by then, and I'm more than ready to return to my routine. I'll put off returning to my weekend job until August; don't want to start out full bore right away. I had blood work today, and will probably get my results tomorrow.  My Prograf was low last week, so I'm anxious to see what it is. My hands are shaking more, so it's probably at least close to therapuetic.

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.

I received an email 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 (which seems so long ago, but was actually just 7 weeks ago). 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.

The article gives a link to my LJ blog (it was written prior to my switch to WordPress), which is why I have been cross posting. However, I'm going to probably just do all of my kidney blogging on WordPress as well as my new blog at MyKidney. 

However, I'll probably still post here on other things, and will definitely keep up with my friends page. 

The link to my other blogs:  Chronic Positivity at WordPress, and Jeff's Transplant Blog at MyKidney. 

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. 

Cross-posted on WordPress.

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.

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.  

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. 

Cross posted at WordPress.

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. 

Cross posted at WordPress.

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.

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. 

Cross posted at WordPress.

My new kidney continues to work flawlessly. I haven’t been as good as before with fluid intake, but WILL be back on track today.

My weight is unchanged, BP and temp are stable,  but my input and output are less.

I did have 3 episodes of diarrhea yesterday (thank you, CellCept), I continue with intermittent hand tremors, and hardly slept last night (Prograf?). But those are minor annoyances that I can live with.

I have routine lab work tomorrow (”the big 3″-blood count, basic metabolic panel, and Prograf level).

On Friday, I have a Urology appointment to remove the stent between my bladder and new kidney. Prior to that, I have a nurse appointment in Nephrology to get an IV infusion of Venofer (Iron).

Going away for the weekend did all of us a lot of good, but it’s time to get back into my routine. I thought that I would have a hard time being away from work, but I’m actually keeping quite busy. I plan on resuming my weekend job when I return to my full time job, except I’ll probably only work Sundays for August, and in September, go back to Saturday and Sunday.

Cross posted on WordPress.

My vital signs are essentially unchanged. My weight fluctuates, but averages around 210 lbs. As long as I don't gain more than a pound or 2, I'm OK with that.

I did try to put jeans on, but couldn't get them buttoned. My abdomen is a little swollen from the surgery, and the nurse told me that it will take several months for it to go down, not to mention the fact that you can see the kidney somewhat jutting out.  We're going tonight to get a pair in a larger size, as well as some shorts for the summer, since most of mine don't fit.

Yesterday when I got home from the doctors' appointments, we went to lunch, and then I came home again and fell asleep for over 3 hours! Fortunately, I have the time to do that.

I've also found that my appetite hasn't been the best. I ate breakfast after my labs, and had almost a whole piece of toast, some scrambled eggs (which I didn't finish), and chocolate milk (not a huge fan of this, but I needed a cold drink to take my meds, and I needed the phosphorous; otherwise, I would have had a coffee).  I guess there's a reason they tell us "small frequent meals" right after the transplant.

The one thing I've been doing is reading. A friend bought me some books, and I just finished the first: Consent To Kill by Vince Flynn. I now have a new favorite author! I have a bunch of unread history-type books, and although I enjoy history, it's not near as exciting to read as a spy thriller such as this. When I was a kid, I used to read all of the time. In High School, my favorite author was James Michener. I've read Chesepeake, Texas, Centennial, Tales of the South Pacific, Hawaii, and possibly some others I don't remember. I always said that if you get through the first 100 pages of any of his books, you'll then get to the good part (he goes into a long drawn out history of the area from prehistoric times to the time the story starts).

Feeling better each day. The minor issues I've had along the way; edema, arm pain, diarrhea, incisional pain, etc are all but resolved.

My daily vital signs are all good today. I also updated my labs, since they are now finally available to me online.

I had my weekly appointments today, which is why I'm posting later than usual.

They had difficulty drawing my blood today, but with what they had to work with, I'm not surprised. They ended up using "old faithful" (a small vein on the outside of my arm just below my elbow).

The Transplant Nephrologist was in first. His main concern is my anemia, and he is right on top of it. He thanked me for being "proactive", as I had emailed him over the weekend to explain my ongoing iron situation, and had requested labs to check on it. Since he's only seen me once since my transplant, I wanted him to know of the ongoing iron problem. He took the time to explain that due to my gastric bypass surgery, I probably malabsorb iron. Iron requires an acid environment (most of my stomach is stapled off, and my "pouch" may not produce enough acid to absorb iron; in addition, my acid secretions are decreased due to the Prilosec), and it also requires the parietal cells in the ileum (portion of the small bowel) as well (my bypass is before the ileum).  The plan is to watch the trend of my iron studies, and if still abnormally low, that I may need monthly IV infusions of iron.

As it turned out, my studies are all normal today, with the exception of my iron binding function, which is minimally below normal. So that is good. My hemoglobin is stable but low, and my hematocrit is fairly stable, although a bit lower than last week. I think that they said that I would need Procrit if the hematocrit goes to 25 or below, so there's still some room there.  And I'm less concerned, because my hemoglobin is unchanged, so maybe the new kidney is producing erythropoietin now.  Also, he discussed my white blood cell count, which is low. That is due to the Valcyte and CellCept. However, he explained that since my segs were high, I'm more or less protected from viruses, but since I had "Campath Induction" , my T cells were essentially wiped out, making me more susceptible to bacterial infections such as TB.

The Transplant Surgeon was in last, and was very pleased with both my labs and my progress. They did a lab called an Immune Cell Function last week. As it was explained to me, this is a guideline for them to use to determine the amount of my immunosuppression, and it is "right on" where they want it. My phosphorous and magnesium are now both within normal, so I can stop the Magnesium Oxide-yea! My Prograf level (FK-506) is finally normal, so I assume my dose stays the same (this wasn't back until after my appointment).

I did print out my "daily vital signs" spreadsheet, and the Transplant Nurse told the surgeon I'm "anal". I agree, however, I also did it to occupy my time as well. But I think that the surgeon is more comfortable with me making sure that I do what I need to do, because he told me that I can come back in 2 weeks, instead of 1 week.

I also asked him about my cystoscopy next week (I'll be getting my stent out). My concern is that I may get an infection, which will travel to my native kidneys. He said that he would  prefer not to give an antibiotic beforehand, because that promotes resistance. If I had a problem with my heart valve, then yes, he would, but not in this case.

I'm excited about a new blogging opportunity. I will be writing for a website that will have multiple bloggers writing on various aspects of kidney disease. I will be writing as a new transplantee. There are also future plans to expand the site, and I will probably be writing as a medical professional. I will post more details when things are up and running. 

Cross posted at WordPress.

Feeling better today. Not as much fatigue, and no longer feeling cold (of course, it got up to the mid 80's here yesterday, so that helped).

My weight is up a pound from yesterday, BP is great, and I had more in than out, but I'm still putting out almost 100 cc's of urine per hour; must be more of the insensible losses.

Last night, I was able to sleep on my side, rather than in the recliner, which is a first since the surgery. The only problem was that I was only able to sleep on my right side, and my right arm "fell asleep", and was somewhat painful when I woke up. I tried switching to my left side (the side the kidney is on), but that didn't work. One of the long-standing sleep issues I've had is sleep position. I always slept on my side, but as my kidneys enlarged from my cysts, I ended up having to switch sides multiple times  per night. That's still an issue, but last night, I just alternated between switching from my right side to my back, and that seemed to work.

My "natives" (the term for a person's kidneys that they were born with, as opposed to the transplanted kidney) are still in, but hopefully will shrivel up to nothing. I expect to lose a good amount of weight when that happens, as each kidney can weigh up to 40 lbs each .

No irregular heart beats yesterday,  but I'm feeling run down, and my appetite isn't the greatest. I did manage to get almost 3 liters of fluid in though. I think I'm catching up on my fluids, because my urine is lighter in color. I'm also at the point now that since I've been measuring my urine, I can accurately guess the amount within 50 ml.

My weight is up a pound from yesterday (normal variation?), my bp remains good, but I did have more fluids in than out (although not worrisome; may be insensible losses).

The arm pain is just about gone; I haven't had pain meds for a few days. The edema in my legs is mostly resolved as well.

Something that is unusual is that every evening, I get cold. Not chills per se, but I'm just cold. We did go out for supper last night, and the restaurant was like a freezer. When I got home, I put a blanket on, even though the outside temp was about 70 degrees (F).

Although my Magnesium dose is 1 twice daily (decreased due to diarrhea), I try to get an extra one when possible; I managed to take three yesterday. 

I suspect that my fatigue is from the low hemoglobin.  Within a week it went from 10.5 to 9.7; maybe it's even lower now. The surgeon said that he wasn't worried about it just yet; it sometimes takes a while before the new kidney starts putting out adequate amounts of Erythropoietin.  As I mentioned in another post, I did message the Nephrologist to see if he wanted labs added on in regards to my iron level, because that's traditionally low as well.

Happy Memorial Day everyone!

I was having occasional skipped heart beats, and not feeling all that great. When it skipped, I had a split second feeling that I was short of breath. My pulse was not high (92-96), but my BP was 152/66); no fever. I thought it might be a reaction to Prograf, since my level was so high this week. I called the Transplant Nurse on call, and she didn’t think it was the Prograf, but rather a reaction to caffeine. I did have 1 glass of Coke at supper, and a cup of coffee at breakfast, and didn’t feel that I had a lot of caffeine yesterday, but maybe it was.  She told me that if it persisted, to go to the ED. It did get better, and resolved within about 2 hours. Nothing today so far. It’s hard to sort out, as I’m on so many meds, and my labs are a bit screwy. I just thought now that maybe it’s my low hemoglobin or low magnesium? Who knows…

I’m down 3 lbs from yesterday, and my BP is lower as well; again, strong correlation between the 2.  No fever, and my ins and outs are ok. I have a hard time making it to drinking 3 liters per day, but I’ll have to keep trying.

I had a good day yesterday. The arm pain for the past 24 hours is practically non-existant.  I did have diarrhea again today, and took 2 Imodium; I hope to soon get that under control. Vitals: BP good, weight stable, no fever, and a bit more in than out, but factoring in the diarrhea, it’s probably OK. I’ve been drinking well (better than the other day). Appetite fair, but not great (that’s OK, I could stand to lose a few lbs in addition to the fluid weight loss).

The transplant nurse called yesterday; my Prograf level is even higher; 10.3 on Monday, and now it’s 12.7! My creatinine is 1.7, but the increase is probably due to the high Prograf level. I’m cutting my dose to 3mg in am and 2mg in PM. Another concern (of mine) is my blood count. My WBC (white blood cells) is 2.26; this lowering can happen with the meds-I believe the Valcyte and CellCept do that. A count that low increases risk of infection.  Also, I’m more anemic; my hemoglobin is 9.7, and hematocrit is 29.9. Could there be Neupogen (to increase white count) and Procrit (for hemoglobin) in my future?  On dialysis, I was always getting Venofer (IV Iron) infusions. I just sent an email to the Transplant Neph to see if he wants studies checked related to this.

Nutritionally, my magnesium level is still low; 1.2, although I’m cutting my Magnesium to 400 mg twice a day (from 800 twice a day) due to the diarrhea.  I suspect the low level is due to the high Prograf level.  My phosphorous is also low at 1.3. So I started eating cottage cheese, drank chocolate milk, and bought some cocoa roasted almonds (yum). Foods high in phosphorous include Biscuits, Nuts,  Dairy Products, Cola, Chocolate, Beans, Meats, and Liver and Organ meats; I can do all of that except the liver and organ meats.

Hands are shaky; surprise, surprise (high Prograf again).

Not much else going on. It’s a beautiful day out today, so Jackie and I are going to take the dogs for a walk this afternoon. I’m definitely going to walk now every day (I did yesterday and the day before); I feel so much better doing that. And when I go back to work, I will walk at lunchtime. I used to go for a ride at lunch, since I’m deskbound all day, but the walk is better; it’s exercise, and with the price of gas, is a lot cheaper.

Not much to report today, as everything is status quo for the most part. My weight and bp are slightly up; I continue to be amazed at how dependant my BP is on small variations in weight.  Ins and outs are close to even, and still no fever (not that I want or expect it).  Updates posted on Daily Vitals.

I'm still sleeping in the recliner, because when I lay flat, it puts a lot of pressure on my incision, and is uncomfortable. I tried again last night, and it's not as bad as before, but still not yet doable.

I was a little concerned yesterday, because my urine was more dark than usual. Probably because I had diarrhea the day before, and was a little "dry". It got better throughout the day as I drank more.

I had labs yesterday, but they won't be back until today, because I had them drawn at a satellite clinic, and the courier probably didn't pick them up until the end of the day. I'll sent a message to the Transplant Nurse to check on them, and will probably hear back later today when the Prograf level is back. I still don't have Monday's labs available on line. I can somewhat understand, as they all go to one doctor, and he signs off on them. I'm sure he has a lot of them to do, in addition to his other responsibilities. As long as I'm told the important ones (creatinine, BUN, magnesium, white count, hemoglobin, phosphorous, and Prograf level), then I don't mind so much.

I walked to the clinic yesterday, and it was even easier than the week before. The phlebotimist there is great; she has gotten blood on the first "stick" both times I went there. With my veins, that's no small feat!

The weather here has been rainy and cold, so my plans for a daily walk went by the wayside. My leg edema is still there, but noticeably improved. My AFO's (ankle foot orthosis aka splint or leg brace) went on much easier.

No diarrhea yesterday, as I took the Imodium the night before (none since). I did have 800 mg of the Magnesium Oxide with lunch and 400 mg at bedtime. Yes, I'm supposed to take 800 mg twice a day, but what good is it if it's causing profuse diarrhea? I will hopefully build up to the correct dose. 

Good day yesterday. Input and output are better than the previous day, my BP today is lower (but not too low), no fever, and my weight is down another pound (that’s good). My appetite picked up a little, and I managed to get more phosphorous in yesterday via some nuts, milk, PB and J on whole wheat (peanuts and wheat have a lot of phosphorous), a protein bar (contains 20% phosphorous), some chocolate, and the cheese in the lasagna we had for dinner.

I did have diarrhea again last night; it happened 12 hours after my magnesium, yet I skipped my mag dose the night before, and no diarrhea in the morning. I’m convinced that is what is causing it. So, I only took 1 magnesium last night along with Imodium (which is an approved drug for me). So far, no diarrhea this morning.

I did have to take Tylenol #3 during the night. I got up to go to the bathroom, and my elbow and hand were very painful. I tried to get back to sleep, but the pain was just too distracting, so I broke down and took it. I was finally able to get back to sleep. Initially, the pain was a numbness/tingling/buring in my 4th and 5th fingers (suggesting an Ulnar nerve problem), and then went to my other fingers and the palm of my hand. It isn’t occurring on a regular basis, so I’m still not worried about it.

My father-in-law was blown away at the retail cost of my Valcyte ($4610 for a three month supply). However, I get an “employee discount”, so that cost is deceiving. Were I to get it from drugstore.com, 3 months of Valcyte would cost $6462.68! BTW, if you want to know what a drug costs, I usually go to drugstore.com  and search for the drug. It’s a ballpark figure, but it gives you some idea of what a drug will cost. Also, on some items, it’s cheaper to pay cash there instead of going through your insurance. For example, it was much cheaper to buy a year’s worth of fluoride there, than put it through the insurance (I can’t remember the numbers, as Kevin is no longer on it). My Vitamin B-12 injections (I’m on that from having the Gastric Bypass) cost about $15 dollars for the year (12 vials). At a local pharmacy, they are $5 a vial.

I have lab work today at 10am. I won’t know what my labs are until tomorrow. I’ll check later to see if Monday’s labs are available online (they aren’t available until the doctor “dones” them; he usually isn’t very prompt with that, but at least I know the important levels).

Cross posted at WordPress (and Daily Vital Signs are updated and available there).

Everything is going well. I have minimal incision pain, I’m getting around even better than over the weekend, and the arm pain is much improved (no Tylenol #3 in over 24 hours). The only issue is diarrhea, and I’ve narrowed that down to the Magnesium. It occurred about 90 minutes after my dose yesterday, so I skipped the evening dose, and I’m fine now. For the long term, I’ll check to make sure that taking fiber is OK, and I’ll start that up. You might be wondering why fiber? Well, fiber works by absorbing fluid in the intestine. If you are constipated, it will soften the stool by absorbing liquid, and if you have diarrhea, it will absorb the excess (think Kaopectate; all that is is fiber).

Vital signs today are decent. BP still good (although systolic a little higher today), ins and outs just about even (although the numbers are deceiving; I had diarrhea 3 times yesterday, and I estimate another 800-1000 cc via that “route”), temp good, and weight down a pound. I notice less leg swelling today.

I will now keep my Daily Vitals spreadsheet as a page on my WordPress blog and will update it at least once per day. I will post a link on this sidebar. 

I got a call from Kim (the Transplant Nurse) and my Prograf level is too high (10.7), so I’m decreasing to 3mg every 12 hours (had been 4mg in am, and 3mg in PM). That explains the tremors in my hands.

The one thing I forgot to mention yesterday: the Transplant Nephrologist was floored when I told him that I had gastric bypass surgery, and weighed 400 lbs. He said “I thought you were a fit person; I never would have guessed that!”. He also was optimistic, saying “it looks like you are getting healthier…your 40’s are healthier than your 30’s”.  I never thought of it that way, but he’s right; I’m off blood pressure meds (at least for now), I’m 200 lbs lighter than I was in my 30’s, I have better kidney function (albeit with a little surgical help ), and I FEEL so much better!

One other thing not mentioned. The nurse who I saw is very talkative (as are Jackie and I); we enjoy our conversations with her, as they are very informative. She was talking about the newer Liver Transplant program at Geisinger. There was a gentleman who received a liver there, yet the need for a transplant came on suddenly. He bought a bottle of Chinese Herbs (she didn’t say which) apparently for erection issues. He got through a portion of the bottle, and started feeling poorly. He went to see his doctor, and was LifeFlighted to Geisinger in liver failure, from just a PORTION of a bottle of an herbal supplement! That is why I DO NOT take any of these herbal supplements. There’s a much greater potential for liver or kidney damage due to them being essentially unregulated. It’s my opinion that anyone taking these is playing Russian Roulette with their body’s filtering organs.