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.

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.

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.

Doing well today. Stomach is MUCH better, but I did have diarrhea the past 2 days. Could be from the CellCept (very common) or the Magnesium Oxide. I'm not too worried at this point.

I had my appointments yesterday. Both doctors were pleased with the way things are going.

I first saw the nurse, and she thinks the arm pain is probably from positioning in the OR, and I agree. It is getting better, so that's fine with me. I took less pain meds yesterday; in fact, I only took them twice from Midnight to bedtime, and only once this morning.

I have to cancel my dental appointment for a cleaning; they don't want that done until at least 6 months from surgery due to the immunosuppression.

I also addressed the nausea/vomiting, and got a prescription for Prilosec. The Transplant Nephrologist told me to even take it twice daily for several days and then go to once daily.  My stomach is much more settled today.

I do have to drink more; my intake of fluids was about a liter under what I usually take in, and my urine is much more concentrated.
 
I wore my splints again yesterday to my appointments, since I had a lot of walking  (Geisinger is a large campus). By the time I got home, there were ridges in my legs from my socks and splints. In fact, the doctor checked, and I have 4+ pitting edema. That means that when he pressed down on my skin for several seconds (the front of my lower leg), it took more than 4 seconds for the skin to return to shape and the "pit" (depression) to resolve.

The Transplant Nephrologist said that he expects my creatinine to settle in to about 1.4-1.5. It's still 1.6, but my Prograf levels are higher than normal (intentionally);  once they can lift up on the immunosuppression, and lower the dose, my creatinine will lower. He also said that with a 16 year old's kidney, it should last the rest of my life! I was thrilled, because the average life of a transplanted kidney is 14 years. I understand that there are things that can change this, but optimistically, it would be great if it lasts me past retirement age.

The next time I hear a co-worker complain about our insurance coverage, I will promptly tell them about my Valcyte. I received a 3 month supply via the mail order pharmacy; my cost was $40, and the cost without the insurance was $4610.00. I'll be interested to see the cost of my Prograf and CellCept; I sent for 3 month supplies of those (I already know that each will be a $40 co pay, but I don't know what the retail cost is).

 My labs from yesterday are still not available to me, but the nurse told me my creatinine is stable at 1.6, my phosphorous is lower at 1.5 (the surgeon wasn't too concerned; I just have to eat more dairy), and my magnesium is lower at 1.2(?). I'll post them when they are available.

Next week my appointments are on Wednesday, which is the traditional "Transplant Clinic" day. So, I have to get labs "locally" on Thursday, and then again the morning of my appointments; there is a Geisinger clinic within walking distance, which is better for me; that way, Jackie doesn't have to take off work to drive me to Danville for labs.

Here are my "vitals". Note that on 5/8, that was the day I came home, and the next day, I didn't realize that I had to weigh myself until I read through all of the literature they gave me. There is a lot of verbal and written info on discharge, and it's a bit overwhelming. Also, in my free time, I'm learning Excel, so that is why it's in spreadsheet format (I figured that now is a good time to learn it, as well as apply what I learned). Note the input and output are tallied at the end of the day, and the BP, Temp, and Weight are done upon awakening. 

(I tried posting the spreadsheet here on LJ, but the last column got cut off; I'm just so frustrated trying to copy and paste tables/spreadsheets here as it rarely is easy; click here for my WordPress blog to view it).

My meds include:

Prograf 3 mg twice daily (used to prevent my immune system from rejecting the kidney); the dose of this will be regulated by lab work, and will likely change.

Cellcept 500 mg twice daily (used to prevent my immune system from rejecting the kidney); this dose will stay constant unless I have a problem with my blood counts or infection.

Aspirin 81 mg daily (to prevent the new kidney from clotting off)

Diflucan 200 mg weekly x4 weeks (to prevent fungal mouth infection)

Dapsone 100 mg daily (to prevent Pneumocystis Carinii, an organism that causes a nasty pneumonia in those that are immunosuppressed; an opportunistic organism). They usually use Bactrim for this, but I'm allergic.

Valcyte 900 mg daily (my donor was positive for CMV and I was negative; this med prevents me from getting CMV, a viral infection that causes mild symptoms in most people, but could be damaging or life-threatening in the immunosuppressed).

Pepcid 20 mg daily (prevents stomach ulcers and heartburn; the stress of the surgery can cause increased stomach acid production, and at least one of the other meds irritates the stomach)

The reason for the frequent blood work is that Prograf is adjusted by it's level in the body. Some of the others can also have an adverse effect on the blood count and kidney function, and there is the potential for some adjusting of the other doses as well. It's a delicate balance, hence the need for close follow up, especially in the beginning. 

Cross posted at WordPress