Posts Tagged ‘arm pain’

Transplant Day 19

May 22, 2008 3 comments

Good day yesterday. Input and output are better than the previous day, my BP today is lower (but not too low), no fever, and my weight is down another pound (that’s good). My appetite picked up a little, and I managed to get more phosphorous in yesterday via some nuts, milk, PB and J on whole wheat (peanuts and wheat have a lot of phosphorous), a protein bar (contains 20% phosphorous), some chocolate, and the cheese in the lasagna we had for dinner.

I did have diarrhea again last night; it happened 12 hours after my magnesium, yet I skipped my mag dose the night before, and no diarrhea in the morning. I’m convinced that is what is causing it. So, I only took 1 magnesium last night along with Imodium (which is an approved drug for me). So far, no diarrhea this morning.

I did have to take Tylenol #3 during the night. I got up to go to the bathroom, and my elbow and hand were very painful. I tried to get back to sleep, but the pain was just too distracting, so I broke down and took it. I was finally able to get back to sleep. Initially, the pain was a numbness/tingling/buring in my 4th and 5th fingers (suggesting an Ulnar nerve problem), and then went to my other fingers and the palm of my hand. It isn’t occurring on a regular basis, so I’m still not worried about it.

My father-in-law was blown away at the retail cost of my Valcyte ($4610 for a three month supply). However, I get an “employee discount”, so that cost is deceiving. Were I to get it from, 3 months of Valcyte would cost $6462.68! BTW, if you want to know what a drug costs, I usually go to  and search for the drug. It’s a ballpark figure, but it gives you some idea of what a drug will cost. Also, on some items, it’s cheaper to pay cash there instead of going through your insurance. For example, it was much cheaper to buy a year’s worth of fluoride there, than put it through the insurance (I can’t remember the numbers, as Kevin is no longer on it). My Vitamin B-12 injections (I’m on that from having the Gastric Bypass) cost about $15 dollars for the year (12 vials). At a local pharmacy, they are $5 a vial.

I have lab work today at 10am. I won’t know what my labs are until tomorrow. I’ll check later to see if Monday’s labs are available online (they aren’t available until the doctor “dones” them; he usually isn’t very prompt with that, but at least I know the important levels).



Transplant Day 17; Appointments

May 20, 2008 4 comments

Doing well today. Stomach is MUCH better, but I did have diarrhea the past 2 days. Could be from the CellCept (very common) or the Magnesium Oxide. I’m not too worried at this point.

I had my appointments yesterday. Both doctors were pleased with the way things are going.

I first saw the nurse, and she thinks the arm pain is probably from positioning in the OR, and I agree. It is getting better, so that’s fine with me. I took less pain meds yesterday; in fact, I only took them twice from Midnight to bedtime, and only once this morning.

I have to cancel my dental appointment for a cleaning; they don’t want that done until at least 6 months from surgery due to the immunosuppression.

I also addressed the nausea/vomiting, and got a prescription for Prilosec. The Transplant Nephrologist told me to even take it twice daily for several days and then go to once daily.  My stomach is much more settled today.

I do have to drink more; my intake of fluids was about a liter under what I usually take in, and my urine is much more concentrated.
I wore my splints again yesterday to my appointments, since I had a lot of walking  (Geisinger is a large campus). By the time I got home, there were ridges in my legs from my socks and splints. In fact, the doctor checked, and I have 4+ pitting edema. That means that when he pressed down on my skin for several seconds (the front of my lower leg), it took more than 4 seconds for the skin to return to shape and the “pit” (depression) to resolve.

The Transplant Nephrologist said that he expects my creatinine to settle in to about 1.4-1.5. It’s still 1.6, but my Prograf levels are higher than normal (intentionally);  once they can lift up on the immunosuppression, and lower the dose, my creatinine will lower. He also said that with a 16 year old’s kidney, it should last the rest of my life! I was thrilled, because the average life of a transplanted kidney is 14 years. I understand that there are things that can change this, but optimistically, it would be great if it lasts me past retirement age.

The next time I hear a co-worker complain about our insurance coverage, I will promptly tell them about my Valcyte. I received a 3 month supply via the mail order pharmacy; my cost was $40, and the cost without the insurance was $4610.00. I’ll be interested to see the cost of my Prograf and CellCept; I sent for 3 month supplies of those (I already know that each will be a $40 co pay, but I don’t know what the retail cost is).

 My labs from yesterday are still not available to me, but the nurse told me my creatinine is stable at 1.6, my phosphorous is lower at 1.5 (the surgeon wasn’t too concerned; I just have to eat more dairy), and my magnesium is lower at 1.2(?). I’ll post them when they are available.

Next week my appointments are on Wednesday, which is the traditional “Transplant Clinic” day. So, I have to get labs “locally” on Thursday, and then again the morning of my appointments; there is a Geisinger clinic within walking distance, which is better for me; that way, Jackie doesn’t have to take off work to drive me to Danville for labs.

Here are my “vitals”. Note that on 5/8, that was the day I came home, and the next day, I didn’t realize that I had to weigh myself until I read through all of the literature they gave me. There is a lot of verbal and written info on discharge, and it’s a bit overwhelming. Also, in my free time, I’m learning Excel, so that is why it’s in spreadsheet format (I figured that now is a good time to learn it, as well as apply what I learned). Note the input and output are tallied at the end of the day, and the BP, Temp, and Weight are done upon awakening.

Date   Input Output BP Temp Wt (kg) Wt (lbs)
5/8/2008   1040 775        
5/9/2008   3320 2575 134/64 98.6    
5/10/2008   3080 2300 132/64 98.5 100 220
5/11/2008   3280 2950 132/72 98.1 99.0909 218
5/12/2008   2740 2900 138/70 98 99.0909 218
5/13/2008   2680 2485 138/78 97.7 99.5 219
5/14/2008   2740 3375 132/80 96.5 99.5 219
5/15/2008   3160 3000 138/80 97.7 99.8 219.5
5/16/2008   3590 3800 132/82 97.9 99.0909 218
5/17/2008   2960 3375 138/78 97.8 99.3182 218.5
5/18/2008   2320 3500 132/68 97.7 97.2727 214
5/19/2008   2800 2275 128/70 97 96.3636 212
5/20/2008       122/62 97.8 95.4545 210


Transplant Day 16

May 19, 2008 2 comments

Another rough day stomach-wise yesterday. I started Prilosec on Saturday night, and felt better. I was still ok Sunday morning, but by supper, my stomach didn’t feel right. No vomiting, but it was unsettled. We went out to eat, and all I had was a small salad and bowl of soup (since I didn’t eat much, I figured that my total sodium for the day was still within limits). I felt yucky for most of the night, but held off on taking the Prilosec until 10pm. That way, it would still be working today through at least early evening. I felt much better within an hour.

My total intake yesterday was down for both liquids and solids, but my urine output was still good.  Total ins: 2320 cc; total outs: 3500 cc. Today, my wt is down 2 lbs to 212 (maybe some of the extra fluid is finally coming off), BP 128/70 (MUCH better), and temp 97.0.

Being that I have my appointments today, I had to hold off on taking my evening Prograf until 12:30 this morning; the labs have to be drawn 12 hours after the last dose. Instead of relying on my alarm, I stayed up. I’ll be back on track with my dosing schedule by tomorrow.

The arm pain is better overall, but still occurs mainly at night, when my arm is still. That’s on my list for today to discuss with the doctor.

Yesterday, I forgot my phone when we went to pick Kevin up at Jackie’s parents house (about 1 hour away). When I realized it, I panicked. But then I remembered that I’m not waiting for “the call” from the transplant nurse!

Anyway, I had a voice mail when I got home. It was from our family doctor, to check to see if Jackie and I were doing OK. I called him back, and had a nice conversation; he asked if there was anything I needed. How many people are lucky enough to have a doctor like this?

My WordPress blog surpassed 1000 views yesterday! Not sure where my LiveJournal is at, as they do not offer those stats to bloggers (hence one of the reasons for the move). The 2 things I DO like about LJ over WordPress is that LJ has a friends page that keeps you up to date on their entries, as well as the ability to limit a post to “friends only”, thus keeping it private.

I’ll post either this evening or tomorrow about my appointments today.


Transplant Day 15

May 18, 2008 6 comments

The main issues since yesterday’s post are arm pain and nausea/vomiting, but from a kidney-standpoint, everything is great.

Today’s vitals: BP 132/68, Temp 97.7, Wt 214, and yesterday’s ins 2960, and outs were 3375.  BP yesterday was 138/78, and wt was 4 lbs higher.

The reason for the changes probably have to do with my stomach. I vomited 3 times yesterday, and hardly ate much at all. Remembering back to my last appointment, the doctor had stopped my Pepcid, because he prefers to use Prilosec (they are from 2 different classes of drugs; Pepcid is an H2 antagonist and Prilosec is a PPI). He said that if I had stomach problems, he would Rx Prilosec. So, last night I picked up some over the counter Prilosec, and away went my stomach problems! I’ve actually had nausea for the past few days, and not coincidentally, it started 2 days after stopping the Pepcid. So I obviously need something. I’ll get a prescription at my appointment tomorrow.

As for the lower BP; not sure if that is from losing weight or the Magnesium kicking in.

My arm continues to hurt, but mainly when I wake up; it wasn’t too bad during the day. Tylenol #3 helps, so I do take that at night.

We had family over for a cookout yesterday. It was a little chilly, but the rain held off until it was over. Our dogs had a blast; especially Digger. Kevin was playing catch with my sister-in-law’s boyfriend’s son, and Digger thought they were playing with him. If one of them didn’t catch the ball, Digger was right there to scoop it up, and proudly ran around the yard with it in his mouth! Chester, despite his arthritis and rotundness, would bark when the ball was thrown, and make a half-hearted attempt to chase it.

Before we got Chester, he lived at the home I work at on weekends (I do private homecare on the side). It’s not unusual for there to be several Amish buggies go by on a Sunday. Chester would run parallel to the buggy as it went down the road, and barked at it the whole way. I’m surprised that the horses were never spooked!

Tomorrow, I have labs at 12:30, so I have to postpone my evening Prograf dose to 12:30 am, so that it is taken 12 hours prior to blood work. After that, I have an appointment with the Transplant Nurse and Surgeon, and then on to the Transplant Nephrologist.


Transplant Day 14

May 17, 2008 2 comments

Today is my 2 week transplant anniversary. Yea! It’s hard to believe it’s been 2 weeks. In one respect, 2 weeks seems like it was long ago, and in another respect, it seems just a short while ago.

My “vitals” are stable. Wt up a 1/2 lb to 218.5, although overall, it’s stable. BP 138/78 (so far, the Magnesium hasn’t helped with that), no fever, and my ins yesterday was 3590 cc and outs 3800. My bladder is finally stretching; 2 days in a row where I had 600 cc out at one time! (previous high was 500 cc). May not seem like a big deal, but the more that comes out at 1 time = more room = less trips to the bathroom!

I got my labs back yesterday afternoon, and everything is stable (posted below). Creatinine and BUN stable, and Prograf at upper end of desired range, so no change in dose. Potassium remains at upper end of normal, yet I’m not overdoing it on high potassium foods. Maybe there’s a diuretic in my future.

I’m doing well GI wise. No more constipation; we’ll leave it at that 🙂 Occasional nausea, but that may very well be from my gastric bypass; hard to say. I did throw up a tiny bit about 20 minutes after taking my meds, but I took some on an empty stomach, so that’s probably why. I’m figuring that I got most of them in, so I won’t repeat them.

The one thing that sticks out (figuratively speaking) since transplant? NO MORE ITCHING! I used to have itching constantly; increased phosphorous is notorious for doing this. But now, my Phosphorous is below normal, and the itching is gone.

My right arm is still bothersome. I’ve found that a heating pad works well, but I’ve also had to take Tylenol #3 at times to help with the pain. It’s a different kind of pain than I have with kidney cyst ruptures; more like an intense ache. It’s not related to exertion; if fact, it’s worse when I’m sleeping and wake up. Don’t misunderstand; I’m not whining about it, just reporting it. I’m able to “suck it up”; in relation to everything else, this is minor.



Reference Range































FK-506 (Prograf






Transplant Day 12

May 15, 2008 4 comments

Still doing well. The incisional pain is less each day, although my lower left abdomen (where they placed the kidney) is protruding out a bit.

Weight today is up a half pound. BP 138/80, and yesterday, I had 2740 cc in, and 3375 out. Maybe my weight isn’t coming down because of inactivity and eating better? I decided I will start walking short distances. Today is a good day to start, as I will be walking over to the nearby clinic for blood work. It’s a little longer distance than I would like, but it shouldn’t be a problem.

I definitely still have a lot of fluid “on board”. I just put my leg splints on for the first time since before the surgery, and they are very snug. Prior to surgery, there was actually a lot of room in the calf portion of each; today, I had a hard time fitting my leg in them, especially the left splint. That will get better over time, so I’m not worried. it’s actually reassuring, because it confirms that my weight gain is mostly fluid.

My right arm continues to be bothersome. I was up several times during the night with significant pain in my middle arm, and now have shoulder pain as well. I’ll talk to the doctor on Monday about it, but I don’t think there’s much he can do about it.

Since my Magnesium level was low, the surgeon started me on Magnesium Oxide 400 mg, 2 tabs twice/day. They sent the rx to the pharmacy, but I got a call from the pharmacy today that it is over the counter, and they don’t fill OTC meds (it’s a mail order pharmacy). I’m pretty sure that the doc said that Prograf depletes magnesium. I went out and bought a bottle tonight at Wal Mart (Mag Ox), and it was $15 for 120 tabs. When I got home, I ordered 750 tabs, and with the shipping, it came to $16 and change. If anyone needs to be put on this, check out Wonder Labs. They also have a huge selection of vitamins, minerals, and herbs. Maybe once I’m on this for several days, I’ll start to see my blood pressure go down.

As you can see, I’m still playing around with different designs for my blog. Any comments on this one?

I’ll post my Prograf level tomorrow.



Transplant Day 11

May 14, 2008 4 comments

I’m continuing to do well. My weight is stable, my blood pressure is still “borderline” today (132/80), no fever, and yesterday I had 2680 cc’s in and 2485 out. My goal for today is to drink at least 3000 cc’s.

My arm continues to hurt. The pain is mainly in the right bicep and down to the inner aspect of my elbow. I also had pain yesterday on the inner aspect of my right lower forearm/wrist. The distribution seems as though it’s nerve related, but the pain is an intense ache, and not that of numbness, tingling and/or burning.

The one thing I left out that I learned about at my appointment is the number of antigens that I matched with my donor. When I was placed on the transplant list, I started getting monthly blood work. This was sent to Hershey Medical Center and held for a month, until the new specimen replaced it. When I was called for a kidney, they would use this blood to match it against the potential donor’s blood. They look at 6 different antigens, as well as other things. I matched 3 out of 6 antigens with my donor, which is OK. The lower the number of matches, the more likely you are to reject, although with today’s immunosuppressant regimens, this is less of an issue.

Also, the Transplant Nurse told me they will be checking me for HIV and Hepatitis in 3 and 6 months, due to the fact that my donor died of a drug overdose. There were conflicting reports between what she told me and what the nurse told me the night he called to offer the kidney. On Monday, I was told that the donor did NOT have a history of IV drug use, but on the initial call I was told that she was an IV drug user. I’m not worried about it.

My surgeon won’t allow me to drive for 6 weeks. The reason being that if I were in an accident, he’s afraid my kidney will be damaged by the steering wheel.

Prior to transplant, I craved milk. Now, I have no interest in drinking any, but I should, because of the low phosphorous. Could it be that my donor didn’t like milk? It just seems so odd….

“Dying Man”  has a great article on living life despite chronic or terminal conditions.

Now that I have a lot of free time, I’m trying to keep myself busy. Yesterday, I cut up strawberries that we bought a few days ago, spent a lot of time surfing blogs, made dinner, and helped Kevin put line on the trimmer (I walked him through it without handling the trimmer very much and I wore a mask; don’t want to breathe in any of those soil pathogens). I also started reading some books I started. Right now it’s The Fountainhead by Ayn Rand. Last night, the 3 of us started watching “Tuesday’s with Morrie”; great movie.