CHRONIC POSITIVITY - Life with Polycystic Kidney Disease

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.

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.

Protecting the Heart in Muscular Dystrophy Patients wait until you see which med they studied….

Perfecting an Artificial Pancreas misleading title; this is about producing insulin (the pancreas has other functions as well). Nonetheless, this is potential big news on the diabetes front.

Tobacco as a Self-Medication and Wellness opinion piece on how people self-medicate with tobacco, yet are being financially punished for this.

Vitamin D Linked To Reduced Mortality Rate In Chronic Kidney Disease the docs tested all of us on dialysis a few months ago, and I started on Vitamin D (ergocalciferol, which is non-activated), in addition to Zemplar (the activated form). I think you’ll be seeing a lot more on Vitamin D, even in “healthy” patients.

Microsoft Envisions Smarter EMR Interfaces this is interesting to me, as my employer is 100% EMR based (electronic medical record)

The Transplant Nurse called yesterday with my Prograf level: 6.6. It was 3 when I was discharged last Thursday, so it came up nicely. Dr. Maloo does want it in the 8-10 range for the first 3 months, so I will change my dose to 4mg in am and 3mg in pm (had been 3 and 3). So far, no side effects.

I also called and cancelled my appointment for my fistula stenting for tomorrow. Prior to yesterday’s visit, I was adamant that I would not let the doctors “tie it off”, but after talking to Dr. Maloo, and having the explanation of it being a “high flow fistula”, and potentially causing heart problems down the road, I’m a lot more open to having it tied off in the future. I’m sure my right arm is out for a fistula if I need one in the distant future, but there’s always my legs (my mom had grafts in both legs when she was on dialysis).

One of the nurses in clinic yesterday was telling me of an 80 year old man that had a kidney transplant that lasted 27 years, and for a good number of years, had not taken ANY immunosuppressants! Of course, he’s on dialysis now. If I could get 27 years out of this one, I’ll be thrilled. I’d be in my early 70’s at that point.

My bp is creeping upwards. Last Friday, it was 132/64; today it is 138/78. Something to watch, but not really worry about. I will probably have to start on BP meds again, but what’s one more pill? Besides, if they put me on an ACE Inhibitor, they protect the kidneys, so that won’t be all that bad (e.g. Lisinopril). Up until about 3 months ago, I had been on BP meds for almost 20 years.

Yesterday, for the first time, my output (2900 cc) exceeded my input (2740 cc).

I think I might have had some damage to my shoulder in the OR. Every morning when I wake up, my right shoulder has a significant ache. This is the arm that I had the arterial line in my armpit; did they have my right arm extended out for too long? Rotator cuff injury? I’m not planning on making a big issue of it, but hopefully it will resolve.

Yesterday morning (actually, in the middle of the night), I stumbled into the bathroom, and as I was standing in front of the toilet, I heard a noise, and then saw the shower curtain move. Digger, our GoldenDoodle, was sleeping in the bathtub again, stepped out of the tub, and went into his crate to finish off the night!

Today was my first outpatient follow up with the transplant surgeon.

I initially met with the Transplant Nurse, and she went over everything such as meds, labs, weight, BP, etc.

The surgeon came in, and overall was very pleased. He’s very perfectionistic, and asked “what are we going to do about your weight?” But then he realized that my weight gain was mostly fluid, and he was OK with that when I explained that I had a 10 kg (22 lb) weight gain after surgery. He asked what the creatinine was, and said that “I want it lower”. The nurse chimed in and said that she thought it was great, as did I. He said, “It’s good, it’s just that I’m impatient with these things”. At first he was concerned about my urine, because the urinalysis showed small Esterace and large blood, which may signify infection. But I’ve had blood and esterace in my past few specimens, so that was reassuring. The culture is pending.

As for the rest of my labs, I was THRILLED with my creatinine; my kidney function last Thursday was 28% and is now 50%! My potassium is a little higher than even when I was on dialysis, but still normal; he just said that I should enjoy eating different foods, but in moderation.  My magnesium is low, but he expected that; I’ll be on a magnesium supplement (it was low due to my Prograf). My phosphorous is low, so I have to increase my dairy intake. Hemoglobin is low, but that’s probably due to surgery; once my kidney settles in more and starts producing erythropoeitin, it should come up.  I did have a large amount of microscopic blood in my urine, but again, probably a combination of the surgery and my “native” cyst-filled kidneys. My Prograf level will be back this afternoon. It was 3 when I left the hospital, and he wants it up between 8-10.  I did have a dose increase on discharge, but I expect it to be raised again.

Appointment next Monday (every week for 3 months), as well as labs on Thursday this week and next Monday.

I asked about my fistula, since I was scheduled to have stents placed on Wednesday. He wants to wait 3 months and then have it done. He said that eventually, he will tie it off, but that’s “a long way down the road”. Since mine is a “high flow fistula”, he said that he has seen where patients have gone into heart failure because of this. He convinced me….

Today is day 8 after my kidney transplant. Still peeing up a storm! I feel even better than yesterday, and the incisional pain is decreased.

I’ve decided that from now on, I will refer to it as MY kidney, not “the kidney I got from the donor”. No disrespect towards the donor and her family; it’s strictly to further allow for my immune system to accept it. There’s no scientific evidence to back this up, but I firmly believe that the mind has at least SOME power over our physical makeup, so it won’t hurt…

Interestingly, after I decided this, I read a brochure that was given to me in the hospital. It’s named “Understanding Rejection” and put out by Roche Pharmaceuticals (manufacturer of CellCept). “One transplant patient talks to the cells of his immune system each morning; “Hey guys n’ gals in there, this kidney is a new friend of ours. Go easy on it today and we’ll all be a lot happier”. Sounds nutty, but I think it’s a good idea.

My vitals are good; no fever, wt is down a pound (to 218), BP 132/72, and yesterday I had 3080 cc’s in and 2300 cc’s out. I will be asking about that at my appointment tomorrow; I don’t think it’s an issue (maybe there is some fluid staying in the GI tract?), but I’ll add that to my list of questions.

Other good news; Jackie has 2 interviews this week. Tomorrow she interviews for a summer job working with autistic kids (she has a lot of experience with this; when she worked in the Psych hospital for over 10 years, she would do one on ones with the autistic patients, as the other staff didn’t care to do it). She has an interview on Thursday for a contract Elementary teaching position in our local district; currently, she teaches there, but it’s a non-contract position without benefits.

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.

My first night home after my kidney transplant went well. We watched a movie, and I was in bed by 10pm. I started out in bed, but laying flat is uncomfortable with the incision, so after my first of 3 trips to the bathroom, I slept in the recliner. It’s times like these that I realize that my planning when we bought our house has paid off. We live in a ranch style home, and 1 floor is very convenient.

I have to keep track of my “ins and outs”, as well as my vital signs. Through the night, I put out over a liter of urine!

I’ve determined that my bladder, at this point, has a maximum capacity of 1/2 liter; when I pee 500 cc’s, I feel as though it will burst. The reason for the smaller capacity is most likely due to shrinkage. My urine output while on dialysis was minimal, and since my bladder wasn’t being used, it probably shrunk. It will probably take a few weeks before it once again becomes used to being utilized so much and so often.

My appetite in the hospital wasn’t the greatest, but is better this morning. I wasn’t up to fixing much, so I just had flavored cream cheese (protein source) and crackers, so that I didn’t take my meds on an empty stomach. Right now I’m having milk and a ZonePerfect protein bar.

I’m trying to cut back on Percocet, since I only have 30 of them. How ironic that there are people faking back pain and can get 240 for the month, but I had major abdominal surgery and can only get 30. I realize they have to be careful so as not to get the patient hooked on them, but I take them because I need them, not because I want a “buzz”. I took 2 at bedtime, and none so far yet today. I can tell when it’s time, because I break into a sweat, and my heart rate increases to about 108. It hurts more when I sit in a chair, so it looks as though I’ll spend a lot of the time reclined back in the recliner.

My meds include:

Prograf 3 mg twice daily (used to prevent my immune system from rejecting the kidney); the dose of this will be regulated by lab work, and will likely change.

Cellcept 500 mg twice daily (used to prevent my immune system from rejecting the kidney); this dose will stay constant unless I have a problem with my blood counts or infection.
Aspirin 81 mg daily (to prevent the new kidney from clotting off)

Diflucan 200 mg weekly x4 weeks (to prevent fungal mouth infection)

Dapsone 100 mg daily (to prevent Pneumocystis Carinii, an organism that causes a nasty pneumonia in those that are immunosuppressed; an opportunistic organism). They usually use Bactrim for this, but I’m allergic.

Valcyte 900 mg daily (my donor was positive for CMV and I was negative; this med prevents me from getting CMV, a viral infection that causes mild symptoms in most people, but could be damaging or life-threatening in the immunosuppressed).

Pepcid 20 mg daily (prevents stomach ulcers and heartburn; the stress of the surgery can cause increased stomach acid production, and at least one of the other meds irritates the stomach)

The reason for the frequent blood work is that Prograf is adjusted by it’s level in the body. Some of the others can also have an adverse effect on the blood count and kidney function, and there is the potential for some adjusting of the other doses as well. It’s a delicate balance, hence the need for close follow up, especially in the beginning.