Posts Tagged ‘valcyte’

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….

Getting Used To Less

November 19, 2008 1 comment

Last night, I filled my med containers for the week, and it was very strange. Being that I have ended some of my meds, I have this feeling that I’m missing some. I’m not, but it’s hard to get used to only taking 5 pills in the morning, rather than 7 or 8.

After my appointment last week, something popped into my head: could the Valcyte have been causing my low hemoglobin, and need for continued Procrit? I’ll find out next month, when I get my labs done again. I continue getting my Procrit every Tuesday.

And that’s another thing; having gone from bi-weekly appointments and lab work to monthly, I feel as though I’m missing appointments. The change in frequency is hard to get used to, but it’s a GOOD thing.

I’m still walking every weekday at lunch, and Jackie and I have started taking the dogs out for a walk several nights a week.

Work continues to be very busy. The illness du jour right now is vomiting and diarrhea. I can rattle off the advice I give to parents in my sleep. It’s all cyclical; we’re starting to see Croup now, then there will be a lull before Christmas, and then we;ll start off the New Year with RSV and Influenza. Spring brings with it asthma and vomiting/diarrhea again, and after that, once the weather gets nice, we’ll start seeing injuries and swimmer’s ear. And it will start all over…

A while back, I was on my lunch break, and walking out to the food cart at work to get some lunch, and was behind a petite female, who appeared younger than me and was walking with a cane. When I watched more closely, she was taking her cane for a walk, using it maybe every other step, and was joined on her way out by her apparent boyfriend. I couldn’t help overhearing him ask her if she “got the prescription”. She said yes, and that she had to call the company to “get the scooter approved” (motorized wheelchair). As she was about 20 feet from the door, she put the cane under her arm, and walked out the door! And people wonder why healthcare is so expensive?

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.

Transplant Week 21, Other Stuff

October 1, 2008 Leave a comment

The farther out I get from my Kidney Transplant, the less I have to write about (as I’ve said before, I’ll take  boring).

I had labs done last week, and my Creatinine is rock stable at 1.2, my Hemoglobin has leveled out at 11.3 for the past month and a half (still on Procrit), and my Prograf level took a fairly large jump.

I doubled my Valcyte the week before, and my WBC dropped noticeably from 5.2 to 3.9. I predict that I’ll get Neutropenic again, and have to go to once a day Valcyte. As for the Prograf, I took my dose late the night before (I had a “dumping” episode from eating a small amount of ice cream), so it’s possible that I took it later than I thought, and thus drew my labs an hour early.

Appointment next week with the Transplant Surgeon, but not with the Nephrologist.  I’ll also have labs as well.

I just put up a new entry at my blog at MyKidney.  It involves the story of a 21 year old (Sam Pifer) who signed an organ donor card, died of a head injury, and had his organs harvested against his parents’ wishes.

Jackie and I went to Bethlehem this past Saturday to a Celtic Music Festival.  We mainly went to see The Elders, and again, we weren’t disappointed. Many in the crowd weren’t disappointed, and I’m sure they picked up a lot of new fans. (you can hear samples of their albums here). We also caught part of the previous band, The Town Pants. I probably will download an album or 2 of theirs off of iTunes; their fiddle player was awesome.

Confused about the “Bailout”? My personal opinion is that the plan is just another BOHICA from those we elected to represent us.  Giving 700,000,000,000 to 1,000,000,000,000 to the Treasury Secretary to “fix” the problem that was caused by greedy politicians and executives at Fannie Mae and Freddie Mac is akin to letting the fox guard the henhouse, not to mention all of the pork that will be piled on top of this money.  Jeffrey Miron, a lecturer on economics at Harvard has an excellent commentary on the bailout. Worth reading.

Speaking of the Bailout, I decided to contact my 2 Senators who will be voting on the Senate bailout plan this evening. I first phoned Bob Casey’s office, and the phone was answered on the first ring. I gave my opinion, she asked my zip code, and was ready to hang up. But I asked her if she was going to take my name; replied that she wasn’t. When I asked why, she told me it was because “we are getting too many calls”. I hung up; so much for my Senator caring about his constituents’ opinions. I tried numerous times to contact Arlen Spector’s office, and got either a busy signal, or a “circuits busy” message.  Pennsylvania had a movement called PA Clean Sweep after the thiefs Assemblymen in the Pennsylvania General Assembly tried to vote themselves a raise in a session held in the middle of the night. I personally hope that such a movement takes hold nationally.

Transplant Week 20

September 22, 2008 Leave a comment

Yes, it’s been a full 20 weeks since transplant, and everything is going well.

I had appointments last week with the Transplant Surgeon and Nurse, and the Transplant Nephrologist.

Back during the summer, my Valcyte was reduced to 450 mg daily. It had been 450 mg every 12 hours, but my White Blood Cell count took a nose dive, I became neutropenic, and had to decrease it. I was on a higher dose, since my donor was CMV + and I was CMV -. Now that my WBC is up, they put me back on the original dose. My immunosuppression will be decreased at the 6 month mark (around the first week in November), so I will be taken off the Dapsone (prophylaxis for Pneumocystis) and the Valcyte.

I don’t know if I’ve mentioned this previously, but I also had a hard area above my incision. The surgeons felt that it was a hematoma (collection of blood), and that it was nothing to worry about. It’s still there, but markedly smaller, so I would think their assessment was correct.

The Transplant Nephrologist reviewed everything, and had no issues. He was a little surprised that I needed Procrit (the other Neph started me on it, and this is the first I saw Dr. G since starting Procrit), as with Polycystic Kidney Disease, it’s very unusual for a transplantee to need it. However, he felt that the Thalassemia Minor that I have was why I needed a boost.

Other than that, I’m eating well (maybe a little TOO well), I’m back walking again at lunch time after a 1+ month break. I wear lower leg orthotics (due to the hereditary nerve atrophy in my extremities), had some skin breakdown on my ankle, had to wait 2 weeks for an appointment for an adjustment, broke them back in after not wearing them for a while, and now am finally back to walking. It feels good to once again exercise, as for the past few years of kidney failure, I didn’t have the energy to do it.

Work has been very busy lately. I really don’t mind; in fact, I’m glad, because the day goes much quicker. We had a suprise inspection last week by the “ISO” aka the Information Security Office. My employer takes information security very seriously for numerous reasons. Most importantly, they only allow those involved in a patient’s care to access that chart. I’ve heard of several instances where employees were fired for accessing the chart of a friend, relative, or other patient, when they had no reason to be in the chart. And unlike “paper” charts, there is ALWAYS a way to check who was in it, as we must sign on to the EHR (electronic health record) before we can access any chart. They also have numerous measures to prevent viruses on the network, with the latest being a ban on accessing internet email (Yahoo, Gmail, etc). Anway, many people were “written up” for leaving computers unsecured and other “violations”.

This past Sunday was an 8 Buggy Sunday. The unusual thing was that I saw them both before and after work. Usually I just see them before work on their way to church, and the middle of the shift when they are returning.  I actually saw a “minibuggy” (the Amish version of a “minivan”). It was an open buggy with 3 rows of seats, rather than the traditional 2 rows, and there were 2 adults and 5 children in it. Of course, none of them were in buggy seats (car seats).