Medical Article Scan June 2008

Stowers Institute discovers possible cause of polycystic kidney disease – I’ve heard several theories about the cause of PKD, which is currently known as a hereditary disease. One such theory is that it is caused by an infectious disease. Now, a researcher postulates that a gene mutation occurs from being disrupted by Tumor Necrosis Factor, and that Enbrel may be a treatment.

Low Vitamin D, Anemia Linked – more interesting research on Vitamin D. The study compared those with impaired renal function to those with normal renal function, and found that those with impaired renal function and low Vitamin D levels were at a much higher risk for anemia. “Data show that supplementation with 25 (OH) D is associated with reductions in pro-inflammatory cytokines”  It’s also interesting to note that a study of over 16,000 participants (not necessarily renal patients) showed that Vitamin D deficiency was significantly associated with increasing prevalence of CVD (cardio vascular disease) in the entire study population.

10 Surprising Places Where Germs Lurk – I found this article personally interesting, since I am currently immunosupressed.   Of course, some of the places are well known, such as grocery cart handles, gym equipment, and the shower curtain. But did you ever consider your vacuum, the lemon wedge in your drink, or the menu in a restuarant?  (hat tip to WhiteCoat Rants) 

Weight Gain Increases Risks To Kidneys – gaining weight while remaining within normal range increases risk of chronic kidney disease.

Bariatric Surgery May Help Prevent Infections – interesting study. Roux-en-Y Gastric Bypass may not only help prevent infections, but also prevent cancer.

Transplant Day 25, Appointments

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.

Transplant Day 19

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 drugstore.com, 3 months of Valcyte would cost $6462.68! BTW, if you want to know what a drug costs, I usually go to drugstore.com  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 18

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.

Transplant Day 13

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).

Cruising Right Along….

Doing even better each day since being home after my transplant. No narcotics yet today for pain; it’s very manageable. We did go shopping last night, and I did a good amount of walking; maybe that helped?

I have to keep track of my bp, temp, input, output, and weight on a daily basis. Yesterday, I took in 3320 cc of fluid, and put out 2575. On the surface, that seems to be problematic, but during the night, I put out almost 1000 cc, so there is the difference. As I’m keeping daily records, it should balance out. My bp is good: 132/64 (goal is not to exceed 140/80). Wt is 219 lbs (99.5 kg). This is excellent, as my hospital weight was 103.1 kg (226.8 lbs). Temp 98.5.

I’ll spare the details, but the docs will be happy to hear on Monday that I had my first post op bowel movement. They were all concerned that I hadn’t had one prior to discharge, but since my gastric bypass, my bowel movements can be up to a week apart, and I had bad diarrhea prior to surgery, so I was probably “cleaned out”. And since I didn’t eat much until the past 2 days, I’m not surprised….

Jackie has been wonderful. She helps me with my shoes (it’s still hard to bend over), and is always asking me if I need anything. She is much more relaxed; she hasn’t slept this good in years. She attributes it to the “hidden stress” of waiting for the kidney, and now that stress is over.

 

 

New Address (and other stuff)

I bought a domain from GoDaddy, and it is now “up and running”. When you type in www.chronicpositivity.com, it will redirect you to my WordPress blog.

For some reason, I’ve been getting “orthostatic” since Saturday (very lightheaded if I stand up too quickly). Maybe it’s just a fluke…

Last night was a T3 night. I fell asleep OK, but about 30 minutes later, I woke up and both hands were burning, and I had restless arms (similar to restless legs, except with the arms). It is such a weird feeling, and I tried to let it pass, but after 1/2 hour, it didn’t, so I took 2 Tylenol #3’s, and that did the trick. It’s been about 2 weeks since I took any T3’s, so overall, I’m not overdoing it.

My friend has scheduled an appointment with the surgeon for an initial consultation for gastric bypass. Like I told him, he’ll get to the point where living with being overweight will be worse than the perceived risk of the surgery. And, his medical problems will at the very least become much more manageable, if not resolved. Like I tell everyone: healthwise, it was the best thing I ever did.

Yesterday, I watched one of the best movies I’ve ever seen: Million Dollar Baby. Last night, Jackie, Kevin, and I watched Crash. When we first started it, we almost turned it off. But we stuck it out, and by the end, the consensus was that it WAS a good movie (3.5 stars out of 5).

Tomorrow is election day in PA, and while I enjoy following the antics of each campaign, I’m sick of all of the ads (especially the negative ads), so I’ll be glad when it’s Wednesday. Surprisingly, there are an ABUNDANCE of Ron Paul signs all over the area, and I’ve heard his radio ad several times.