7 months and it’s smooth sailing
Well, it’s now 7 months ago today that I got my new kidney, and I’m peeing up a storm!
The ONLY downside at this point (and one I’m more than willing to live with as compared to dialysis) is that my appetite is better, which resulted in weight gain. I’m stable with my weight, as I continue to walk every day at lunch, and my clothes are only 1 size larger…
However, the numerous upsides far outweigh the downsides. The biggest difference I notice is mental clarity. My brain actually works once again. Prior to dialysis, and even when I was ON dialysis, my mental function was noticeably different. I wasn’t able to think as clearly, multi-tasking was difficult, etc. I also was very tired all of the time.
I have my monthly appointment next Wednesday with the Transplant Surgeon and Nephrologist. I can’t wait to see if my hemoglobin is high enough to get rid of the weekly Procrit shots.
Kevin started his new job last night at McDonald’s, and actually liked it. I think that had a lot to do with the fact that he finally has a job. This week, he’s working 5 nights through Sunday, for a total of 25 hours. One of the girls who started with him last night was already fired, after she started arguing with the manager. Duh….
I got Kevin’s new computer up and running. Not bad for $600, although had I waited another week to order it, it would have been cheaper. For those interested in the details:
Raidmax Sagitta 2 Mid-tower ATX Case, Biostar Motherboard, CoolerMaster 550w Power Supply, AMD Dual-core CPU, OCZ Fatal1ty RAM (8 GB) , Western Digital Caviar Black 500GB Hard Drive, LG DVD Burner, and Windows Vista 64 bit Operating System.
It runs great, but I didn’t really “take it for a test drive yet”, nor hook it up to the internet; I just installed Windows and put it away until Christmas.
Vacation Week
For my US readers, a belated Happy Thanksgiving.
I had the week off from my full-time job, but was very busy. I had a dentist appointment for a routine cleaning on Monday, I took our 12 year old Springer Spaniel to the vet on Tuesday for her Rabies vaccine, I took Kevin to his yearly check up on Wednesday, chauffered Kevin around in the afternoons…
I also took our 2003 Chevy Malibu to get a new intake manifold gasket on Tuesday. I knew that when the garage called at 11am, the news probably wasn’t good. The bolts holding the rocker arms were shearing off, and the heads needed to be remachined (does that mean anything to you? it only means $$$ to me). Soooo, I had to rent a car for the week (got a good deal from Enterprise), and hopefully, the work will be done by Tuesday. I’m thinking that this will be the last GM car we get, at least the last one with a 3.1 liter engine. GM was well aware of the issues with that, but continued putting in inferior intake manifold gaskets, as well as using the Dexcool that ruined them.
My sister didn’t get the kidney on Tuesday; she didn’t cross match with the donor. The odd thing is that the Transplant Coordinator asked if she had any blood transfusions lately, as she had antibodies (which she apparently didn’t have before).
I had a white knuckle drive to work this morning; snow on Interstate 80, followed by freezing rain over Washingtonville Mountain/PA 54 (”Warshingtonville” as pronounced by the locals). No Amish buggies this morning, but they apparently already were out before me, judging by the numerous patches of horse manure in my lane.
Medically, I went off my Prilosec for the first time since May. I had never taken it prior to transplant, and want to see if I still need it. I initially was on Pepcid in the hospital, went off of it shortly after coming home, had stomach upset, and then went on Prilosec. I notice that I do have more difficulty tolerating certain foods, in that I can’t eat as much, but that’s a GOOD thing. So, I’ll see how it goes.
We didn’t do the Black Friday doorbusters this year, however, we did get 1 good deal. I need a replacement for my Ipod Nano. Nothing fancy, since I only use it on walks, and don’t use it for video or pics. I’ve been looking at a Samsung 4gb MP3 player. It’s a model that I think just came out, and was $99.99 over the summer. Wal Mart in store has it locally for $79.99, and $69.99 online. I saw that Circuit City had it Friday for $59.99, so I ordered it for instore pickup. When I got to the store, they had it for $79.99, so I saved $20 just by ordering online. I notice today that Wal Mart lowered it another $5, and has it on clearance. since it’s a Christmas gift from Jackie and Kevin, I won’t open it until Christmas, so I won’t know how good it is until then. I’ve always had good luck with Samsung, so it should be fine.
Call for a kidney
My sister called me today while I was in the dentist’s chair; she got a call for a possible kidney. When I called her back, she was on her way to the hospital to get her blood work done to match antibodies (HLA typing); the doofuses (sp?) at her dialysis unit didn’t draw it this month as they were supposed to. Now, after it’s drawn, a taxi has to take it 90 minutes from Geisinger, to the lab at Hershey in order for it to be run.
As you may know, she has been on dialysis for a while now (I think it’s almost 4 years now), but was listed for transplant after me. Also, her blood type is O negative, and mine is A negative (O is usually a longer wait for an organ).
The downside to this call is that she’s 5th in line (making it less likely for her to get it, although not impossible), and the circumstances: the donor is a 50 year old with substance abuse history (alcohol and cocaine) who shot himself.
The upside is that she is getting calls now (IIRC, this is her 2nd).
She is concerned that if she IS offered the kidney, that it may have damage from the donor’s lifestyle (substance abuse). Rest assured, the surgeons would not even consider putting one in that was less-than-optimal; she is listed at the same transplant center as I got mine-Geisinger Medical Center.
In other news, our son had a job interview today and now has a job. Yes, he will be cooking hamburgers at the McDonald’s that is located 4 blocks from our house.
He was very excited, as it’s difficult to get a job these days as a teen, at least a job that is within our town, as well as the fact that he won’t have to ask us for money (his words). The manager chose him over the kid interviewed after Kevin, who was wearing jeans and a “gangsta” sweatwshirt (Kevin wore Dockers and a nice shirt).
Ironically, I also worked at McDonald’s when I was the same age (I had “pull” in getting my job, as my uncle was a vice president for McDonald’s at their Oak Brook HQ, and knew the local owners). Now, Kevin can learn firsthand about income redistribution.
Getting Used To Less
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
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….
6 month kidney-versary
Another milestone reached-I made it 6 months post transplant without any major problems! The reason this is a milestone is that my immunosuppression will be lowered, and thus a lower risk of opportunistic infection.
I was thinking about how things have changed since before my surgery.
- it now only takes me less than 5 minutes when I have to pee, several times a day, versus 5 hours 3 times a week at dialysis
- I now have ENERGY to do things I need and want to do
- my brain works once again
- no more Restless Leg Syndrome (for the most part)
- neuropathic pain in my hands and feet (tingling, burning) MUCH better
- I have an appetite
- I can eat nuts
- no more Phos-Lo
- minimal problem with constipation
- no more blood pressure meds
I’m sure I can come up with other improvements, but you get the jist.
Life is good…..
Chester 199?-2008
It’s a sad day in our house today, as we will be going to the Veteranarian’s office today to say goodbye to our Sheltie, Chester.
We adopted/”rescued” Chester in September 2006 from a family I work for on the weekend. Several of us were worried that “Chet” would meet an untimely demise in a nearby field (it’s common amongst farmers around here to kill a dog when they are no longer useful), so when I heard that they were getting rid of him, I snatched him right up. We never knew how old he was, but probably is somewhere between 14-16 years old.
Chet was one of the best dogs we ever had. He was very overweight (38 lbs last year, but down to 28 this past week), had arthritis and an unknown skin condition (Dermatomyositis would be my guess, as it’s common with Shelties), but despite his health issues, he thrived since coming to live with us.
Chet was loyal to me, although he loved Jackie and Kevin as well. He would know when it was time for me to come home from work, and Jackie said he would wait by the door to the garage everyday to greet me. Wherever I went in the house, he went, even over the past few weeks when he wasn’t feeling so well. For instance, whenever I was on the computer, he would lie right in the doorway. If someone dared to come in, the would get a friendly nip on their feet or ankles.
He also liked to play, in his own certain way. If Digger (our Golden Doodle who TOWERED above Chet) was running around in the living room with a toy, sometimes Chet would go after him and bite his ankles. We initially thought this was aggression, but quickly figured out it was his way of playing. If you threw a towel at him, he would get it in his mouth, and vigorously shake it side to side, drop it, and bark until you picked it up and threw it back at him.
As I mentioned previously, Chet hasn’t been doing well for the past few weeks. He started with a decreased appetite, then no appetite, then he stopped drinking. Normally, the dog food dishes would empty out by the time we got home from work, so when we noticed over the past few weeks that they were not being emptied, we know something was wrong. Chet had a unique way of eating. He would lay down in front of the dog food dish, with his front paws on either side, and then chow down.
We took him to the vet on Friday, and has been there since, getting IV fluids. Today, he could hardly walk, and an ultrasound of the abdomen found a mass. It was pressing against his kidney, but they weren’t able to determine if it had originated in his liver, spleen, etc.
We’ll be going after work today to see him for one last time….
Chester 199?-2008
Sunday Stuff
Today, we “fell back” with our clocks, and turned them back 1 hour. Being that I worked today, and depend on my cell phone for an alarm, I was very disappointed (actually, quite pissed off), that Verizon Wireless still, as of 1:15 pm EST, has not fixed the problem. Jackie’s phone and the phone of the mother who’s house I work at both are having the same problem, yet the father, sister, and other nurse I work with aren’t.
Today I hit a lot of traffic on the way to work; I got stuck behind 3 Amish buggies. Usually, they travel the opposite direction when I’m driving in, but today, church services must have been at a nearby house. It’s very dangerous for these buggies on a hilly highway. Just 2 or 3 years ago, there was a buggy that had just driven over the crest of a hill, and a car slammed into them from behind, killing some people. It’s ever worse in the fog.
Chester, our elderly Sheltie, is in the “hospital”. His appetite has been poor over the last week or so, and he hasn’t even been drinking much. Friday morning, he was having breathing difficulty, but his nostrils were caked shut with dried mucous. He ended up staying over at the Vet’s, had blood work and a chest x-ray (which didn’t show much other than dehydration), and has been getting IV fluids. He still isn’t eating today, so she decided to keep him until tomorrow.
And now, for some entertainment, here’s some awesome juggling (I’m not sure why the first frame is a kitten/frog; it has nothing to do with the video):
Almost 6 months post-transplant…
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.
It’s been awhile…
Time flies when you work 7 days a week! I’m not complaining; in fact, I’m GLAD that I’m physically able to do it. What a difference a few months make. Back in April, I was still working full-time, and doing 12 hours a week of dialysis on top of that, but I either slept or rested every chance I got. Now, I sleep about 5-6 hours a night, don’t take any naps, and still am ready to go!
I’m closing in on the 6 month post-transplant mark now, which means less immunosuppression, and thus, less meds. I had labs 2 weeks in a row now due to decreasing my Prograf, and everything looks good (I hope to get a copy of today’s labs so that I can post them tomorrow). Today, my creatinine is 1.3 (I was lazy with fluid intake, so it’s up a bit, but not at all worrisome; you can tell my hydration isn’t the greatest by the BUN being a little elevated as well). The good news is my hemoglobin FINALLY hit 12 today; the highest it’s been since before my transplant in May. Maybe no more Procrit soon?
I often wonder what the status is of my “native” kidneys. When my mother had hers removed in preparation for a transplant, hers were practically nonexistant, as she had been on dialysis for 3 years at that point (the only reasons they remove them now is for infection, excessive pain, to make room for a transplant, and a handful of other reasons). I get a reminder a few days a week that they are still there, when a get twinges of pain. The pain is sharp for a brief 1-2 seconds, and then goes away.
I’m still walking at least 4 times a week on my lunch break, and feel better doing so. This has created some issues with my feet (worsened calluses), but maybe I’ll get to the Podiatrist to see if he can do anything to help.
Today, Digger was very proud. He killed his first rabbit, and was feasting on it in our back yard (he’s our 3 year old GoldenDoodle). He also pranced around the yard with it in his mouth, with his head held high, and his tail up in the air. I didn’t yell at him, because it’s natural instinct for him. The way I look at it is that if the rabbits dig holes under our fence, and are stupid enough to come into a yard with 3 dogs, that’s the chance they take.
I’ve been working in the clinic now for over 14 years, yet there is always something new that presents itself. I get to see first hand, the entitlement attitude of some people, but this week beats them all. In another department on the same floor I work on, a lady of about 46 called to ask the doctor to write a letter. You see, she’s healthy, except for the chronic back pain she has, for which she gets LOTS of Percocet (well over 100 tabs per month). She is on a Medicaid managed care plan, and told the person answering in our clinic that she called her “insurance company”, and was told that if she got a letter from the doctor, she may be able to get reimbursement from Medicaid for the costs incurred with her horses (yes, that’s plural). You see, she rides her horses as therapy for her back pain, so this is actually a medical expense. I was a little confused, because the LAST thing I would do is to ride a horse if I had chronic severe back pain. But for me, it’s a moot point, because I’m too busy with work and other responsiblities to have TIME to ride a horse. If your not miffed with this, then I guess it wouldn’t bother you much if you found out that this same Medicaid company also pays for tubal ligations to be reversed. Our tax dollars at work (although I don’t have any problem with Medicaid providing insurance to those who truly need it, and can’t afford it).
I’ll be glad when the election is over. Here in Northeastern PA, we are being BOMBARDED with political ads. Although the polls don’t show it, Pennsylvania is still very much in play for the Presidential election (a poll of registered voters is much less accurate than a poll of likely voters, and there are MANY other factors which can make a poll inaccurate). In addition, our Congressman was in the thick of things with the Fannie Mae/Subprime mess, and for the first time since winning 24 years ago, it is likely that he will lose his seat. Less than 2 weeks to go, and that’s a good thing….
About
My name is Jeff, and I was born in 1963. I married Jackie in 1990 after we met in a psychiatric hospital (we both worked there). Kevin is our teen-aged son.
RN since 1989. I currently work in a hospital-based Pediatric Clinic.
Dog lover. We have 3 2 dogs: Kelsea (Springer Spaniel), Chester (Sheltie), and Digger (GoldenDoodle).
Hobbies: genealogy (main areas of research are Scotland, England, Ireland, and Northeastern Pennsylvania), computers, listening to music (Celtic, Rock, Classical; my current favorites are Enter The Haggis, The Screaming Orphans and Flogging Molly), and following news and politics (I’m a Libertarian but registered Republican, as Pennsylvania doesn’t allow cross-party voting in the primary).
I have 2 major chronic illnesses: Polycystic Kidney Disease and Charcot-Marie-Tooth Disease (a form of muscular dystrophy). I’ve also had gastric bypass surgery successfully (I’m 200 lbs less than my pre-op weight from January 2002), and most recently received a kidney transplant on May 3, 2008 at Geisinger Medical Center, Danville, PA. Thank you donor and donor family!
Philosophy: Chronic illness is all in what you make it; it is what it is, and I won’t let it limit what I do…
Feel free to send me an email; address here.
