Posts Tagged ‘anemia’

1st Kidney-versary

May 3, 2009 9 comments

It’s hard to believe, but it was exactly 1 year ago that I received my kidney transplant!

I’ve been very fortunate. The only “issue” I had was anemia for the first 6 months, which turned out to be drug induced (either the Valcyte or the Dapsone), but once I stopped those in November, my blood counts returned to my baseline.  Oh, and of course there was the dreaded HIV scare, but that was nothing more than a “scare” (all because someone ordered the wrong lab work).

Through all of those years of gradually going into kidney failure, and then dialysis, the difference is striking. The mental fog of kidney failure is a memory (pun intended), I’m off all blood pressure meds for the first time in almost 20 years, I can drink an many fluids as I want now, I can eat foods with phosphorous and potassium without having to worry about limiting them or taking pills to prevent absorption,  I don’t need naps anymore, and I haven’t had severe muscle cramps since being on dialysis (muscle cramps from dialysis are one of only 2 types of pain that has ever brought tears to my eyes; the other was when I had ruptured kidney cysts).

Of course, nothing is guaranteed, and someday I may very well return to going back on dialysis,  but for now, I’m enjoying my new life.  And again, many thanks to the family of my deceased donor for choosing to donate her organs upon her death.


A bit of a scare

December 11, 2008 3 comments

I chose to wait to write about this incident, for obvious reasons….

Being that my donor was a substance abuser, that put me in the “high risk” category for a blood-borne disease such as Hepatitis C and HIV. They tested the donor thoroughly, but there still is a small “window” between infection and being able to pick it up on testing.

Everything was going well until September, when I was due for my routine HIV and Hep C testing. I had it done the day before, and when the Transplant Coordinator entered the room, I immediately knew something was wrong, and when she laid a lab slip next to me for more HIV testing (which I had done the day before), I figured something was REALLY wrong.

It turns out that the wrong test was ordered. Instead of a HIV 1 and 2 antibody, they ordered a Western Blot. As was explained to me, the Western Blot checks for 6 different HIV antibodies. 0 is negative, 1-2 is indeterminate, and 3-6 is positive for HIV. Wouldn’t you know, I had 1 antibody. I was fit in that day to see the Infectious Disease doc because the surgeon wanted reassurance for me (and him) that it wasn’t an issue. The first thing the ID doc said to me was that he didn’t know why I was there for an appointment because it was a big nothing. I was 20 weeks post-transplant, and indeterminate Western Blots are not all that uncommon. Sometimes a person is indeterminate the one time, and the next time is negative; sometimes they continue with an antibody or 2. But the window for infection is predominately within 6 weeks, so he felt it was nothing. They did the correct test that day, and I was negative.

I was tested again 2 days ago, and continue to be negative (for both Hep C and HIV). The surgeon told me at my appointment that due to the profound immunosuppression right after transplant, should the kidney have been HIV+, I would have developed HIV shortly after. Yes, it was a stressful time….

My theory of last month was validated: after 1 month of being off Dapsone and Valcyte, my hemoglobin is up more than 2 GRAMS; I was 11.5, and this week was 13.6! So it must have been either or both meds causing the anemia. No more Procrit, which is good.

I’ll still be getting monthly labs, but my next appt is 2 months, rather than 1, so things are always getting better.

The only downside lately is that I’ve been getting mild to moderate flank pain. No doubt cyst pain from my “native” kidneys, and not much to do about it, unless they get infected. I hope they shrivel up soon and fade away, as they most likely will do….

Transplant Week 12

July 26, 2008 Leave a comment

Yes, it’s been 12 weeks since my kidney transplant, and things are going rather smoothly.

I did find out my Prograf level (FK-506), and it is going up. This week, it’s 10.6, but the nurse said that she would call if there were any changes, so I assume I’m to stay on the same dose.

I got a call from the nurse at VITALine today. This is the agency which will be dispensing and managing my Procrit. Initially, she said that they weren’t going to seek an authorization from the insurance company, because my kidney function is above 60% (when my lab measures kidney function, aka “GFR”, they only quantify anything below 60%; if it’s higher, they list it as >60). In other words, “we don’t think you qualify and/or need it”. But she contacted the Nephrologist that is involved in managing the program (who also happens to be my sister’s Nephrologist), and he told her that I need it. Let’s see; my hemoglobin has not gone above 10 since my transplant, and it’s NEVER been this low in my entire life. And they weren’t going to apply for an authorization? Anyway, I’m chronically anemic since my transplant, and a little boost with a few weeks of Procrit will most likely give me the bump I need to get closer to a normal hemoglobin.

I’ll find out Monday if it is approved. I’m assuming it is, because I had a message from the insurance company pharmacy on my answering machine to call on Monday. If approved, it will be delivered on Tuesday to where I work. I’ll start out on 10,000 units a week, and dose adjustments will be based on my labs. I’m not sure how much it will cost me, but previously, I got a 2 week supply for a $20 copay, so that’s not too bad.

I have been going for a walk on a consistent basis at work. I use my lunch hour, and take a 20-25 minute walk around campus. I pick a hilly route, so that I do get my heart rate up (although the fast heart rate can also be due to the low hemoglobin). I feel better, and with sitting all day at work, it helps to get the exercise mid-day. I hope to increase my speed over the weeks, so that I cover more ground in the same amount of time.

On Tuesday, my blog reached 5000 hits since I started it in April.

Jackie goes for a pedicure on a regular basis (not sure, but I think it’s once a month). Since gas prices are so high, I found a cheaper alternative, and I’ll be going out tomorrow to buy the necessary supplies. 🙂

Transplant Day 31

June 3, 2008 5 comments

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.

Transplant Day 25, Appointments

May 28, 2008 5 comments

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.

Transplant Day 22, Irregular Heart Beat

May 25, 2008 1 comment

Doing well this morning, but not so good late yesterday afternoon.

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.