CHRONIC POSITIVITY – Life with Polycystic Kidney Disease

It’s already been 9 weeks since my kidney transplant. The only “issues” I’ve had is the current low white blood cell count (Neutropenia), some arm pain for the first few weeks after the surgery (most likely from the positioning while under anesthesia), and some minor side effects which have all but gone away (hand tremors from the Prograf and diarrhea from the Magnesium and CellCept).

I have noticed that the Prograf hand tremors are much improved. The surgeon told me I could stop my Magnesium, but I have continued it (3 tabs/day), and I think that it has helped. The hand tremors could be mainly from the neuropathy, and worsened by the Prograf. Anyway, they checked my Magnesium level on June 25, and it is normal, but not by much, and that’s even with 1200 mg/day of Magnesium Oxide.

I did cut my Valcyte back to 450 mg once a day (from twice a day), but it may take a while to see how much that will increase my white blood cell count.  The other “culprit” with the white count is CellCept. One of the side effects of that is “severe neutropenia”, which, if it’s going to happen, will occur between days 31-180, and may require a dose adjustment or temporary halt in therapy. My guess is that since my dose of CellCept is already lower than most (from what I’ve seen, 1000 mg twice a day is common, while mine is 500 mg twice a day), they didn’t want to mess with that. Plus, Valcyte is to prevent CMV, and my last test showed that I don’t have it (despite the CMV+ kidney in my CMV- body). 

I added a ClustrMap “widget” to the right hand sidebar. It tracks visits to this blog on a world map, and is updated daily (if you click on it, a larger map will appear, making it easier to see more specifically where visitors are from). So far, after 2 days, people from 3 continents have looked at my blog, although Antarctica is not yet represented

As I mentioned, I’d love to get out and work in the yard. The other day, I found out that I’m not alone in that sentiment. A doctor I work with was recently diagnosed with Lymphoma and is undergoing chemotherapy. We were talking, and he was saying that it’s a tough adjustment, because he feels lousy for the weekend after chemo, the steroids give him insomnia, and he can’t work outside in the yard. So, I’m certainly not alone (chemo suppresses the immune system as well, so he has to be careful about opportunistic infections).

Another co-worker asked me some questions about her father. He’s 2 years older than me, and has diabetes for 28 years (not sure if Type I or II). He has low vision, poor hearing, and his kidney function dropped within a week from 28% to 21%, his Hemoglobin A1C is ~14 (that’s not good), and he was put on a 1 liter a day fluid restriction due to edema. He has a fistula in, but won’t go for a transplant evaluation and is also extremely hesitant about dialysis. I told her that he can call me go talk about it, as I can certainly understand his apprehension about dialysis. The advantage he’ll have is that he will go to the same dialysis unit I went to, and the staff and patients there are all very nice, making it tolerable. Even though his GFR is 21%, he is already building up fluid, so my guess is that he will need dialysis very shortly. He’s stuck in the house, so maybe getting out 3 days a week will actually help his mental status.

Accident update: I was talking to Derek’s step-father this morning, and told me that Derek WASN’T wearing a seatbelt, but that if he was, he would have been decapitated. We drove by this morning, and there were skid marks, and I saw the trailer he hit (no cab attached). It was sort of a “fifth-wheel” type trailer, with the front elevated above the rest of the trailer. Here is a pic in the local paper of the Dodge Nitro that Derek was driving (clickable thumbnail):

Feeling better each day. The minor issues I’ve had along the way; edema, arm pain, diarrhea, incisional pain, etc are all but resolved.

My daily vital signs are all good today. I also updated my labs, since they are now finally available to me online.

I had my weekly appointments today, which is why I’m posting later than usual.

They had difficulty drawing my blood today, but with what they had to work with, I’m not surprised. They ended up using “old faithful” (a small vein on the outside of my arm just below my elbow).

The Transplant Nephrologist was in first. His main concern is my anemia, and he is right on top of it. He thanked me for being “proactive”, as I had emailed him over the weekend to explain my ongoing iron situation, and had requested labs to check on it. Since he’s only seen me once since my transplant, I wanted him to know of the ongoing iron problem. He took the time to explain that due to my gastric bypass surgery, I probably malabsorb iron. Iron requires an acid environment (most of my stomach is stapled off, and my “pouch” may not produce enough acid to absorb iron; in addition, my acid secretions are decreased due to the Prilosec), and it also requires the parietal cells in the ileum (portion of the small bowel) as well (my bypass is before the ileum).  The plan is to watch the trend of my iron studies, and if still abnormally low, that I may need monthly IV infusions of iron.

As it turned out, my studies are all normal today, with the exception of my iron binding function, which is minimally below normal. So that is good. My hemoglobin is stable but low, and my hematocrit is fairly stable, although a bit lower than last week. I think that they said that I would need Procrit if the hematocrit goes to 25 or below, so there’s still some room there.  And I’m less concerned, because my hemoglobin is unchanged, so maybe the new kidney is producing erythropoietin now.  Also, he discussed my white blood cell count, which is low. That is due to the Valcyte and CellCept. However, he explained that since my segs were high, I’m more or less protected from viruses, but since I had “Campath Induction” , my T cells were essentially wiped out, making me more susceptible to bacterial infections such as TB.

The Transplant Surgeon was in last, and was very pleased with both my labs and my progress. They did a lab called an Immune Cell Function last week. As it was explained to me, this is a guideline for them to use to determine the amount of my immunosuppression, and it is “right on” where they want it. My phosphorous and magnesium are now both within normal, so I can stop the Magnesium Oxide-yea! My Prograf level (FK-506) is finally normal, so I assume my dose stays the same (this wasn’t back until after my appointment).

I did print out my “daily vital signs” spreadsheet, and the Transplant Nurse told the surgeon I’m “anal”. I agree, however, I also did it to occupy my time as well. But I think that the surgeon is more comfortable with me making sure that I do what I need to do, because he told me that I can come back in 2 weeks, instead of 1 week.

I also asked him about my cystoscopy next week (I’ll be getting my stent out). My concern is that I may get an infection, which will travel to my native kidneys. He said that he would  prefer not to give an antibiotic beforehand, because that promotes resistance. If I had a problem with my heart valve, then yes, he would, but not in this case.

I’m excited about a new blogging opportunity. I will be writing for a website that will have multiple bloggers writing on various aspects of kidney disease. I will be writing as a new transplantee. There are also future plans to expand the site, and I will probably be writing as a medical professional. I will post more details when things are up and running.

No irregular heart beats yesterday,  but I’m feeling run down, and my appetite isn’t the greatest. I did manage to get almost 3 liters of fluid in though. I think I’m catching up on my fluids, because my urine is lighter in color. I’m also at the point now that since I’ve been measuring my urine, I can accurately guess the amount within 50 ml.

My weight is up a pound from yesterday (normal variation?), my bp remains good, but I did have more fluids in than out (although not worrisome; may be insensible losses).

The arm pain is just about gone; I haven’t had pain meds for a few days. The edema in my legs is mostly resolved as well.

Something that is unusual is that every evening, I get cold. Not chills per se, but I’m just cold. We did go out for supper last night, and the restaurant was like a freezer. When I got home, I put a blanket on, even though the outside temp was about 70 degrees (F).

Although my Magnesium dose is 1 twice daily (decreased due to diarrhea), I try to get an extra one when possible; I managed to take three yesterday. 

I suspect that my fatigue is from the low hemoglobin.  Within a week it went from 10.5 to 9.7; maybe it’s even lower now. The surgeon said that he wasn’t worried about it just yet; it sometimes takes a while before the new kidney starts putting out adequate amounts of Erythropoietin.  As I mentioned in another post, I did message the Nephrologist to see if he wanted labs added on in regards to my iron level, because that’s traditionally low as well.

Happy Memorial Day everyone!

Doing well this morning, but not so good late yesterday afternoon.

I was having occasional skipped heart beats, and not feeling all that great. When it skipped, I had a split second feeling that I was short of breath. My pulse was not high (92-96), but my BP was 152/66); no fever. I thought it might be a reaction to Prograf, since my level was so high this week. I called the Transplant Nurse on call, and she didn’t think it was the Prograf, but rather a reaction to caffeine. I did have 1 glass of Coke at supper, and a cup of coffee at breakfast, and didn’t feel that I had a lot of caffeine yesterday, but maybe it was.  She told me that if it persisted, to go to the ED. It did get better, and resolved within about 2 hours. Nothing today so far. It’s hard to sort out, as I’m on so many meds, and my labs are a bit screwy. I just thought now that maybe it’s my low hemoglobin or low magnesium? Who knows…

I’m down 3 lbs from yesterday, and my BP is lower as well; again, strong correlation between the 2.  No fever, and my ins and outs are ok. I have a hard time making it to drinking 3 liters per day, but I’ll have to keep trying.

Today is my 3 week anniversary of my kidney transplant! It’s hard to believe how much better I feel than compared to the morning of the surgery when I was at dialysis.

I had a good day yesterday. The arm pain for the past 24 hours is practically non-existant.  I did have diarrhea again today, and took 2 Imodium; I hope to soon get that under control. BP good, weight stable, no fever, and a bit more in than out, but factoring in the diarrhea, it’s probably OK. I’ve been drinking well (better than the other day). Appetite fair, but not great (that’s OK, I could stand to lose a few lbs in addition to the fluid weight loss).

The transplant nurse called yesterday; my Prograf level is even higher; 10.3 on Monday, and now it’s 12.7! My creatinine is 1.7, but the increase is probably due to the high Prograf level. I’m cutting my dose to 3mg in am and 2mg in PM. Another concern (of mine) is my blood count. My WBC (white blood cells) is 2.26; this lowering can happen with the meds-I believe the Valcyte and CellCept do that. A count that low increases risk of infection.  Also, I’m more anemic; my hemoglobin is 9.7, and hematocrit is 29.9. Could there be Neupogen (to increase white count) and Procrit (for hemoglobin) in my future?  On dialysis, I was always getting Venofer (IV Iron) infusions. I just sent an email to the Transplant Neph to see if he wants studies checked related to this.

Nutritionally, my magnesium level is still low; 1.2, although I’m cutting my Magnesium to 400 mg twice a day (from 800 twice a day) due to the diarrhea.  I suspect the low level is due to the high Prograf level.  My phosphorous is also low at 1.3. So I started eating cottage cheese, drank chocolate milk, and bought some cocoa roasted almonds (yum). Foods high in phosphorous include Biscuits, Nuts,  Dairy Products, Cola, Chocolate, Beans, Meats, and Liver and Organ meats; I can do all of that except the liver and organ meats.

Hands are shaky; surprise, surprise (high Prograf again).

Not much else going on. It’s a beautiful day out today, so Jackie and I are going to take the dogs for a walk this afternoon. I’m definitely going to walk now every day (I did yesterday and the day before); I feel so much better doing that. And when I go back to work, I will walk at lunchtime. I used to go for a ride at lunch, since I’m deskbound all day, but the walk is better; it’s exercise, and with the price of gas, is a lot cheaper.

Everything is going well. I have minimal incision pain, I’m getting around even better than over the weekend, and the arm pain is much improved (no Tylenol #3 in over 24 hours). The only issue is diarrhea, and I’ve narrowed that down to the Magnesium. It occurred about 90 minutes after my dose yesterday, so I skipped the evening dose, and I’m fine now. For the long term, I’ll check to make sure that taking fiber is OK, and I’ll start that up. You might be wondering why fiber? Well, fiber works by absorbing fluid in the intestine. If you are constipated, it will soften the stool by absorbing liquid, and if you have diarrhea, it will absorb the excess (think Kaopectate; all that is is fiber).

Vital signs today are decent. BP still good (although systolic a little higher today), ins and outs just about even (although the numbers are deceiving; I had diarrhea 3 times yesterday, and I estimate another 800-1000 cc via that “route”), temp good, and weight down a pound. I notice less leg swelling today.

I will now keep my Daily Vitals spreadsheet as a page that can be access via the link in the upper right corner of the blog.

I got a call from Kim (the Transplant Nurse) and my Prograf level is too high (10.7), so I’m decreasing to 3mg every 12 hours (had been 4mg in am, and 3mg in PM). That explains the tremors in my hands.

The one thing I forgot to mention yesterday: the Transplant Nephrologist was floored when I told him that I had gastric bypass surgery, and weighed 400 lbs. He said “I thought you were a fit person; I never would have guessed that!”. He also was optimistic, saying “it looks like you are getting healthier…your 40′s are healthier than your 30′s”.  I never thought of it that way, but he’s right; I’m off blood pressure meds (at least for now), I’m 200 lbs lighter than I was in my 30′s, I have better kidney function (albeit with a little surgical help ), and I FEEL so much better!

One other thing not mentioned. The nurse who I saw is very talkative (as are Jackie and I); we enjoy our conversations with her, as they are very informative. She was talking about the newer Liver Transplant program at Geisinger. There was a gentleman who received a liver there, yet the need for a transplant came on suddenly. He bought a bottle of Chinese Herbs (she didn’t say which) apparently for erection issues. He got through a portion of the bottle, and started feeling poorly. He went to see his doctor, and was LifeFlighted to Geisinger in liver failure, from just a PORTION of a bottle of an herbal supplement! That is why I DO NOT take any of these herbal supplements. There’s a much greater potential for liver or kidney damage due to them being essentially unregulated. It’s my opinion that anyone taking these is playing Russian Roulette with their body’s filtering organs.

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.

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.

Each day seems to be a little better than the previous. Small steps, but noticeable. I’m able to get around more, less incisional pain/discomfort,and I’m getting used to drinking large amounts of fluid without feeling bloated.

Today’s vitals: wt 218 lbs (down 1.5 from yesterday), BP 132/82 (top number down, bottom number slightly up), Temp 97.9, and yesterday’s input was 3160 cc and output an even 3 liters (3000 cc).

I had labs yesterday morning. The tech did a great job, considering what she had to work with vein-wise. She used “Old Faithful”, which is a small vein on the outside of the top of my forearm just below the elbow crease. The blood was slow coming out, but she eventually was able to fill the 3 tubes. I still don’t have my labs back; probably because this is an “outlying” clinic, and the hospital lab probably didn’t get the blood until the end of yesterday.

The walk yesterday went well. I estimate it was about 1/4-1/2 mile each way, and I tolerated it well. I’ll continue walking every day, hopefully gradually increasing  as I go along. This will serve several purposes; it will hopefully get more fluid off, I’ll be in better shape (aerobic exercise), I won’t be bottled up in the house all day, and maybe it will help my blood pressure.

I filled my med box yesterday; it took about 15 minutes to fill it for the week. By doing it weekly, I’m sure not to miss any meds.

I’m not sure yet if the Magnesium is causing stomach upset. I took my first dose Wednesday night, and yesterday, I got nauseated during lunch. I didn’t eat much until supper, and initially I was nauseated, but then was able to finish without any problem. I ate something before my bedtime dose, and was fine the rest of the night.

The arm continues to be a problem. Right now, it is very painful in my upper forearm at the elbow crease and bicep. I put heat on it when I got up, and that helped. Also, I slept with it on a soft pillow, and that also helped. But when I’m awake, it’s bothersome. The week before my transplant, one of the dialysis nurses gave me a pillow for my arm (promotional item from the manufacturer of Fosrenol); on dialysis, it’s helpful to put the fistula arm on a pillow. I left it at the dialysis unit between treatments, but made sure I took it on my last dialysis day; I’m glad I did.

I was only up once during the night to pee. Definite progress; my bladder must be stretching, because I had 600 cc output that one time. Maybe I’ll eventually be able to make it through the night without having to get up to pee!

I contacted my Bariatric doctor via email (I call him my “fat” doctor; he’s a specialist in obesity). When I had my gastric bypass, I was told that I would take a Multivitamin and Citracal for the rest of my life. When my kidneys started failing, my Nephrologist took over this aspect, because a regular multivitamin could end up being toxic, and I needed to go on a phosphorous binder, which is a form of calcium (calcium acetate). My nephrologist put me on a renal vitamin, which contains vitamins B and Folic Acid. It avoids the fat soluble vitamins, because they could build up toxic levels very easily. Now that I don’t have to take my phosphorous binder, I figured I would have to go back on Citracal, but the Bariatric doc wanted me to clear it with the transplant department. I mentioned this at my last appointment, and the surgeon wanted to know why I needed to take Citracal. I explained it to him, and he didn’t say anything. I guess I’ll have to discuss it in more detail at Monday’s appointment. I keep a running list of questions in my “Ins and Outs” notebook, so I added that question.

Pauly, a good friend of ours (he was my college roommate and best man at our wedding) has made the decision to go for weight loss surgery. He met with the surgeon yesterday, and has to decide whether he wants the Lapband or Gastric Bypass. Up until now, he wasn’t ready to do it. I had suggested it a few times, but didn’t push it, because I realize that the worst thing one can do with this decision is to have it done when they are not sure about it. I know that he is sure of it, and glad he got to this point. I can relate, because my “Fat” doctor suggested it to me, and I went to Hershey Medical Center for an eval (Geisinger wasn’t yet doing it at the time). However, I chickened out and never went back. About 2 years later, a co-worker had it done, and although she had some complications, I saw her progress, and decided to take the plunge (at that point, Geisinger was now doing the procedure). It was the best thing I ever did. If I hadn’t done it, I wouldn’t have been eligible for a transplant, and dialysis would have been difficult (there was a young large guy at dialysis that had 6 hour treatments; with that much weight, 4 hours doesn’t do it). Ironically, my Nephrologist and PCP were not what I call encouraging about it. My PCP wasn’t discouraging, but I could tell that he was skeptical of my decision. My Nephrologist told me that I should put a lot of thought into my decision; I could tell he didn’t think it was the right decision. Now, my PCP is thrilled with my progress (other than the extra fluid weight after my transplant, I’m down close to 200 lbs from my highest weight). My Neph is more positive about it now specifically with me, but I don’t think he’s totally convinced overall).

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.