Posts Tagged ‘dapsone’

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….

6 month Transplant Visit

November 11, 2008 2 comments

I had my 6 month post-transplant visit with the Surgeon and Transplant Coordinator (Nurse) today.

I had expected to be decreased on my Immunosuppressants (Prograf and CellCept), but that didn’t happen. However, the target blood level for Prograf was slightly decreased, from 8-10 to 7-9; the CellCept is not adjusted according to blood level.  So I guess I was indirectly decreased, although not right now.

I did have 2 medications stopped:  Dapsone, which is for prevention of PCP (Pneumocystis Carinii Pneumonia) and Valcyte, which is for prevention of CMV (I was on a double dose since my donor was CMV + and I’m CMV negative). Apparently, the initial suppression of my T Cells with Campath has worn off, and thus I no longer need those 2 meds. 

As a side note, when I was still on orientation at the hospital I was hired for right out of nursing school, one of my first patients was a 10 year old who was less than 24 hours post-op from a living donor kidney transplant (in 1989, back in the days when Cyclosporine was used because Prograf hadn’t yet been invented). Campath had probably not yet been invented as well, and they were using a brand new class of drugs called “monoclonal antibodies”. This girl was given Orthoclone OKT3.  IIRC, this drug was not given prior or during transplant, but was given if there were initial signs of rejection.

This drug was pretty scary, as the side effects included chest pain, heart dysrhythmias, shortness of breath, wheezing, etc. It turns out that this girl had the chest pain and shortness of breath, and had to be put on oxygen and given several Albuterol treatments. I don’t think that this is used, as Campath or Thymoglobulin are the drugs of choice, and are given mainly to prevent rejection, while the OKT3 was (at least initially) used to TREAT acute rejection. How times have changed….

The other (very minor) issue was that I’ve had intermittent pain in my left abdomen, around where the transplant is. I wasn’t very concerned, but did tell the doctor. He examined me, and felt it was maybe a pulled muscle, or as I suspect, pain from sitting too long with jeans that have a tight waistband.

My labs continue to be stable. My hemoglobin is 11.9, so the Procrit continues, my creatinine is 1.2, my Prograf level is 9, and everything else looks great. I’ll post the labs tomorrow when I’m able to enter them into my spreadsheet.

I  had a split-second panic this morning, when packing my lunch box, I realized I forgot to take my morning meds yesterday. Nothing I could do about it, so I took them a little earlier today (I did take my evening meds last night). Just don’t tell my doctor 🙂

My BP continues to be excellent; 124/64. It’s been since last winter when I took my last BP med, which never ceases to amaze me. I was disappointed when I lost weight after gastric bypass, and had to have an INCREASE in BP meds, but now that my “natives” (kidneys) are totally shot, it was probably the kidney failure that caused the hypertension.

My weight is up 5 lbs since last month, so I need to cut down on my intake. I continue to walk daily at work, and Jackie and I started walking nightly. The problem is that I “graze” at work, so I’ll have to cut that out.

‘Til next time….

Almost 6 months post-transplant…

October 30, 2008 Leave a comment

Everything is still pretty much status-quo. I’ll hit another milestone; Monday will be my 6 month anniversary of my transplant. I have appointments next week in the Transplant Department with both the Surgeon and Nephrologist. I anticipate that the surgeon will allow  me to stop the Valcyte and Dapsone, as well as to cut me back on my immunosuppressants.

I was getting my morning coffee yesterday in the lobby of the clinic, and there was an employee who was on orientation there. It turns out that this is her first week back to work since last November, after her kidney transplant. After talking to her, there were striking similarities, other than the fact that we both work here. She also has Polycystic Kidney Disease and received a pediatric kidney.

It was interesting talking to her, as I only get to communicate with other transplantees via the internet. She had done dialysis, but had the opposite experience that I did. She had many problems with her fistula, they were never able to get her dry weight correct (dry weight is the estimated goal that they use to determine how much fluid to take off at dialysis; taking off too little will obviously cause fluid overload, and taking off too much can lead to dehydration), and she frequently had cramping. Now, for those readers who’ve woken up with a muscle cramp in their leg, that is NOTHING compared to the cramps you get on dialysis. I’ve only had them on 2 occasions, and as I mentioned before, they are so severe that I practically cried (there are only 2 reasons I have cried with pain since I’ve been an adult: cramps on dialysis, and when a kidney cyst was in the process of rupturing).

She also had to have her immunosuppression changed. She is currently only on Prograf; they stopped her CellCept when she tested positive for BK virus.

Her kidney is doing great otherwise-a creatinine of 1.0 since the very first lab draw after her transplant. She received a kidney from an 11 year old boy who was playing in an attic, found a gun that was loaded, and accidently shot himself.

This week at work, we had a 5 year old in for an unprovoked bite by a “barn cat”; this cat had an open leg wound previously. They initially treated her with an antibiotic, and the father was to try to catch the cat (cat bites can cause nasty infections, since it’s a closed puncture wound; a dog bite is usually a tear, which can be cleaned out and is less likely for infection). Well, the father did catch the cat, and the head was sent to a lab in Harrisburg late Tuesday; the results came back yesterday, and the cat was positive for Rabies. The leg wound the cat had was probably from a rabid animal.

She came back in yesterday to begin Rabies PEP (post exposure prophylaxis), and tolerated it amazingly well. In addition to a vaccine in her arm, the doctor had to stick a needle in her leg, and inject 3 ml of very thick (and thus very painful)  Rabies Immuno Globulin all around the bite in the back of her calf (Rabies IG is antibodies extracted from blood of people vaccinated with Rabies Vaccine). No crying or even moving; she just said that it felt like bee stings.

My theory is that the child’s reaction was mostly on how she has learned to react to painful situations from how her parents react (although pain threshhold and tolerance probably play a part). Her mother was very stoic and matter-of-fact about it, so the child was as well. Quite a contrast to the parents who make a huge deal of checking a child’s temperature rectally. When I do this, it’s not uncommon for a comment from a parent.

I will be SO glad when November 4th is done;  I’m sick of hearing all of the political ads.

My Meds Post-Transplant

May 8, 2008 Leave a comment

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.