Posts Tagged ‘procrit’

7 months and it’s smooth sailing

December 3, 2008 Leave a comment

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. This is only my 2nd-ever computer build (the last one being 5 years ago). 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.


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….

It’s been awhile…

October 22, 2008 Leave a comment

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….

Monthly Transplant Surgery Appointment, Labs

October 8, 2008 Leave a comment

I had my monthly appointment with the Transplant Surgeon today; the Transplant Nephrologist didn’t have any openings, so I’ll see him next month.

I don’t have my labs to post, but did see them. My creatinine is still at 1.2, and my hemoglobin is 11.5. I’m still on Procrit, and checked via email with the Nephrologist; he will stop it when my hemoglobin hits 12.5. My WBC is still good; IIRC, it’s 3.4. I thought it might go lower since doubling the Valcyte, but it didn’t drop too much. The surgeon feels at this point that the hardened area at my incision site is some scar tissue, and that the hematoma is resolved. He was very pleased with my progress, and I can now have my labs done monthly (I had been doing them bi-weekly). Yeah!

The Transplant Department ordered a wrong lab AGAIN; they ordered a CMV DNA Qualitative (positive or negative), instead of the Quantitative (which gives an actual number). This is the second time this has happened, and I believe it was the secretary who made the error. It happened last month as well, and caused a lot of problems; more about that in a future post.

I’ve been walking now on a regular basis, now that I have my AFO’s adjusted, and feel a lot better. I walk every day at work, Monday to Friday, for about 30 minutes, with half of it up hill. I’ve noticed that if I play my Ipod while walking, I walk faster, and get my heart rate up more.

BP is running in the 120’s/70’s, and the surgeon was thrilled with that. Quite amazing, since I had been on blood pressure meds for well over 15 years, and now, I don’t need any. I’m making an effort to increase my protein intake, since with the gastric bypass, I tend not to get enough in. I’ve been snacking on soy nuts (it’s an acquired taste, especially since they are unsalted), and found an absolutely delicious yogurt that I eat each morning-it has 16 grams of protein and 140 calories per serving!

A friend at work is having a colonoscopy tomorrow, so I sent him a link to this video to help him through it.

And for those who need a little humor, whether you are liberal or conservative, Democrat or Republican (or even Libertarian), you need to watch this.

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).