Hi LPenrod,

That's a question that I'm always asking myself, too. My Hb level is low (10.7 at last check but 9.9 before that) but apparently not low enough to cause symptoms. Yours is 13 so probably OK. However, your iron saturation is low and I'm not sure if that will cause fatigue.

Once at stage 2 of CKD the body is accumulating toxins more than it should, which has a negative impact on energy levels, amongst other things. Mineral balances will also be upset leading to further problems, which may include fatigue. Your vitamin D is low, which may be a factor. Is this being treated?

You mention your pain meds but no other medication. BP meds can cause tiredness, as can other meds. What else do you take?

Have you had Thyroid levels checked? If these are too high or low energy levels are affected.

Chronic kidney disease is known to cause fatigue but the many factors involved are not necessarily well understood. Some people will also have circulatory system problems which affect the oxygen carrying capacity of blood and lead to fatigue. Add to this the disturbed sleep, dealing with pain and stress and for many of us carrying large cystic organs around and you have a guaranteed recipe for fatigue. My husband says I'm tired because I haven't slept for ten years, never mind anything else!

So, the answer may not lie completely in your blood test results. Hopefully others may have more to add.

One more thing, what is your cholesterol level? It didn't show and if it's good we want to know that, too!

Chewitt

Larry,
Your iron levels are low, and so is your CBC, so even though you may not be considered anemic, you're getting there. Unfortunately, for renal patients in Stage 4, normal HGB is considered to be anything over 10, so even if you're exhausted, they're not going to give you any supplemental EPO because of the increased risk of heart attack and stroke. Plus with your decreased iron stores, your body would have a problem using any extra EPO because it takes a heavy load of iron with each dose of EPO to create the red blood cells. So having an adequate iron load (active and stores) is essential, even for the erythropoietin your kidneys are producing to create red blood cells.

You also need to take a look at your diet and cut back on some of the high potassium item (citrus fruit, etc.). Get that potassium back down in to the 4.5 level; it can affect your heart rhythm when it's out of whack (both high and low).

Your Vit D levels are low; supplementation by your doctor is essential. Kidney patients are usually low on Vit D and need supplementation. Ask about it; there are some high dose active prescription VIt D (ergocalciferol) that can be taken once a week for 6 weeks, then repeat your labs to see what the impact is. Then the medication is taken monthly as required. My levels were down around yours and that's what I'm on (just finished the 6 weeks and need to get labs done).

Your PTH is high and needs to be treated now. One of the key symptoms of secondary hyperparathyroidism due to renal failure is FATIGUE. Treating the high PTH can make a world of difference in how you feel. Mine was treated when my levels were about half of your levels and even that made a difference in how I felt, so chances are your high PTH could be a contributing factor in your fatigue. If left unchecked, it can serious fatigue, as well as irreversible renal osteodystrophy, unusual bone growths that can be very painful and permanent. The medication for high PTH is an active form of Vit D3 (in my case it's calcitriol), but it's a completely different medication than what treats low Vit D levels. BTW, despite the caution on the handout, you can take calcitriol and ergocaciferol (an active form of Vit D2 to increase your Vit D levels) at the same time, which is what I've been doing to keep my PTH levels down and increase my Vit D levels.

Hep A. Is this from the Hep A vaccine? Or do you have an active Hep A infection? Hep A is a viral infection that is easily spread in large groups of people and often causes malaise, vomiting, etc. (and can mimic the signs of food poisoning). It can also cause some liver damage, albeit usually transient. However, if you've had the Hep A vaccine, your immune system will show it has antibodies to the viral disease and that is a good thing. So consider WHY you have those antibodies and if you haven't had the vaccine, you definitely need to talk to your doctor.

Speaking of vaccinations, you should also get the Hep B vaccinations (set of 2 or 3 shots), be up to date on your MMR (mumps, measles and german measles), TDAP (tetanus, diphtheria, and pertutiss (aka whooping chough, which has make a virulent comeback lately across the country). Consider what other vaccinations you should have, as well as those you want for future travel (any live vaccines you may need for travel to more exotic locales in the future; get them now pre-transplant so at least you have some immunity to them post-transplant). Don't forget polio, chickenpox, or shingles (if you've had chickenpox). Even though there's an age limit for the shingles vaccine, it can be waived for any number of reasons, to include imminent transplant. Better to be immunized than to get shingles itself!

And of course you're experiencing a drop in GFR after a surgery (your nephrectomy), so fatigue is to be expected. You had surgery, you lost kidney function, and you're still on some heavy duty pain medication (and if I recall correctly you had problems with pain medications causing almost intolerable sedation), so the fentanyl patch and oral Hydromorphone every 4 hours are going to cause sedation and fatigue even though you're used to them. Add to that the side effects of any medications you're on, the declining kidney function and it's no wonder you're not up to running a marathon.

This kidney failure stuff is exhausting, especially when you're dealing with pain around the clock. I'm used to the pain medication, but I know it caused fatigue. There is absolutely no way I would get in a car and drive; I'm too sedated even though I can carry on a normal conversation and can write a novel on this site. But I also take a 2.5 hour nap in the middle of the day and sleep nearly 12 hours at night (definitely not contiguous, my pain won't let me, nor will my bladder, which is so compressed by my massive cystic liver it's amazing it holds anything!). Unfortunately fatigue is a normal part of our lives, especially when we are on the level of pain medication you and I are on. It's something we have to deal with and work around. Take life in small chunks, do what you can right now, and then take a break. Don't commit to a full day of activity but perhaps an hour at a time and see how that goes.

And remember, we are a system of systems. Not everything is caused by or due to our kidneys (or cystic liver). All too often we and our doctors look at us as a set of kidneys and forget we're a person with a plethora of other systems and possible problems that may well be contributing to the fatigue. And we too need to remember that we're not superman; there comes a time when we simply can't do it all!

Gentle hugs and best wishes,
Ruth

Ah yes, my meds...

Regularly Taken
Fentanyl 100 mcg/hr 48-hours
Hydromorphone 4-8 mg every 4 hours
Welbutrin 150 mg x 2
Cymbalta 60 mg
Nicardipine 30 mg x 2
Simvastatin 20 mg ( temp off )
Clonazepam 2.0 mg
Ambien CR 12.5 mg
Omeprazole DR 20 mg x 2
MultiVitamin
Calcium + D
B-Complex
B-12
D3
Warfarin 7.5 mg
Levothyroxine 50 mcg (AM, empty stomach, 30 min before food)
D2 1.25 mg (50,000 units) weekly

As Needed
Nitrostat .4 mg
Lidoderm 700 MG 5% as needed for kidney pain
Levitra
Senokot-S (8.6 mg of sennosides and 50 mg of docusate sodium) 4 x 4

But D is being treated. My need changed though. Although calcium is alright which is usually a canary for Vit D.
My thyroid is high (PTH 255).

Oops, Lipids:
Cholesterol

Larry,
That's a lot of meds! Given the health problems that you have and the cocktail of medications that you're taking, I'd be surprised if you weren't suffering side effects, including fatigue. Clonazepam, for instance, often causes drowsiness. There is also a great likelihood of undesirable drug interactions occurring. Fentanyl and Cymbalta are advised against together because of the potential for a major interaction. If you haven't had a full medications review recently, it may be worth arranging this to check that you are taking the most appropriate meds for you and that you don't have any mixes which are dangerous. This combination of drugs should in any case be carefully monitored. Also, some of the problems which you have are being treated but are not at good levels eg Vit D. There are probably other adjustments which are needed, too.

Chewitt

Larry,
What is your serum calcium level? It's not only the canary for Vit D, but also for PTH which is Parathyroid, NOT thyroid, they're different glands). The parathyroids glands, of which you have 4, sit on the corners of your thyroid gland and produce a variety of hormones unrelated to the thyroid and work closely with the kidneys to keep your electrolytes, especially the calcium used for bone development, in balance. The treatment for hyperparathyroidism is a form of Vit D3.

You noted that you were on Synthroid (a low dose), but I didn't see a TSH level listed. What is it? Normal is not necessarily normal; the American Association of Clinical Endocrinologists changed the normal range to 0.3-3.04 back in 2013, but most labs still show normal as being 0.5-5.5 (which is NOT normal anymore). All too many doctors treat to the numbers and not to symptoms, so you may still be hypothyroid even though you're on Synthroid (and are you on brand name Synthroid or a generic; this is one of the medications where being on the brand name medication is essential as there is enough of a variation in the amount of medication in the generic brands that many insurance companies and I know the military pharmacy system mandates only the brand name is carried). Patients can often tell a difference when they get a different generic medication simply due to the change in a tiny amount of the active ingredient. Yes, I know they're supposed to be identical, but in this case, they're known to be different so ask your doctor to request approval for brand name Synthroid and take that and only that. And be sure your doctor is treating you to symptoms and not to a lab number. The Synthoid is not going to harm your kidneys, but insufficient thyroid levels can cause osteoporosis, something that the immunosuppressents will also contribute to as well.

And when did you start the Vit D treatment? It takes at least 6 weeks to see a change so you should be getting labs done after 6 weeks to see if the Vit D supplements to see if they're working (they should).

You're on a number of medications that will cause constipation (in addition to your pain medications, the klonopin can contribute, as can the calcium supplement). As for the Colace, I take it 100 mg twice a day, faithfully. It's essential to keep things moving in your system. You need to stay ahead of the curve when it comes to your bowels and taking the Colace on schedule will help that and lessen your need to use the senna product. Have your talked to your doctor about Miralax as a secondary bowel product (also known as PEG-3350? It has no taste and can be mixed in any fluid, hot or cold. It doesn't work immediately and there's no limit on how much you can take (I take one dose per day when I have to take my breakthough pain medication (I take 20 mg methadone tid, and have oxycodone, 15 mg, every 4 hours for breakthrough pain, which fortunately I don't need too often...knock on wood). Miralax is the same product that's in Go-Lytely, but in a much smaller dose. I like it (all things considered) as it's very gentle and it stays in the colon and simply absorbs fluid and makes it easier to go. It works over time, so taking it regularly helps. You're on

The Omeprazole (Prilosec) is contraindicated for patients with a GFR below 30 and not recommended for patients with a GFR under 50. I know that stinks, but there you go.

Obviously Ambien, Klonopin, Fentanyl, and Hydromophone are all sedating. Ambien is for sleep, so that's a good thing (assuming you're taking it at night). Clonazepam is a benzodiazepine with a long half life (16-24 hours), so it may be causing some daytime sedation (I don't know why you're taking it; I take 1.5 mg at night for severe restless legs and have been since 2002 so it's doesn't cause any sedation for me anymore as my body is very used to it, so much so that I am immune to the effects of Versed, a heavy duty benzodiazepine used to sedate patients during colonoscopies, etc.). I also don't react to IV fentanyl either, so for sedation I get Propofol administered by an anesthesiologist. Great way to sleep through a procedure and you don't remember a thing! I've had RLS since I was a teen, so I don't know if/when I'll taper off it, but my understanding is it's a challenge to get off the benzos.

What type of multivitamin are you on and is it ONLY a multivitamin? I ask because at this point in time, you should probably be on a Nephrocaps (a multivitamin capsule made for kidney patients that are vitamins only) or a commercial equivalent. The Nephrocaps are a gel-cap, very dark red (versus the Colace that are bright red and clear) and have just the basics in terms of vitamins. No minerals whatsoever and no fillers either. You should NOT be taking any supplemental minerals unless prescribed by your nephrologist and you need to watch what's in your multivitamin as many have unwanted fillers and some call themselves multivitamins yet have some minerals in them as well.

I don't know what time of day you take your second dose of Wellbutrin, but it's considered an "energizing" antidespressant and can interfere with sleep if taken too late in the afternoon/evening. Consider that when deciding on what time to take your second dose. My brother was on it for a short period of time and found that the only time he could tolerate taking two doses and sleep at night without needing any other medication was if he took the second dose no later than 2 pm. Changing the timing of your dose may help with your sleep and that may help with your fatigue.

Keep in mind that if Ambien and Klonopin, plus the pain medications which are also sedating, all may help you sleep, but the quality of your sleep may be seriously compromised. One of the issues that occurs with people on the chronic pain medicaitons is central sleep apnea (which is very different from obstructive sleep apnea...do you snore by chance?). Central apnea occurs when the medications start to affect the part of your brain that automatically tells you to breathe. After an extended period of time on these pain medications, that system can get interrupted and we can develop central apneas where our brain literally forgets to breathe at times. My last sleep study showed it occurred 11 times in one hour (which was about the only hour I got a decent level of sleep and then I woke up so they didn't get a full night's study). That level deserves treatment, but since I only had 11 for the whole night (supposedly, we never got a copy of the entire night's study), no treatment. As such and because you've been on pain medication for a number of years, a sleep study ideally at a certified sleep center (not one of these run of the mill centers that are all over the place) will show if you have obstructive sleep apnea or central sleep apneas. The treatment is the same, CPAP machines to ensure your body and brain continue to get air all night long. They can make a huge difference in how you feel. My husband has obstructive sleep apnea (he stopped breathing 56 times/hour) and has slept with a machine for 11 years (every single night and nap) and it's made a huge difference in how he feels. He's still not a morning person, but he no longer wakes up exhausted and with a headache and has energy to get through the day (granted he's not dealing with PKD, etc.), but he's doing everything I used to do and more, so that CPAP machine is a literal lifesaver! Talk to your doctor about a sleep study; many aren't aware of the dangers of central apneas and it's not necessarily something your sleeping companion is going to notice as much as the snoring/obstructive sleep apnea snorting is going to be.

I wish I had a magic wand and could wave it over the computer and magically give you and others a big dose of energy. Alas, my "magic wand" is handmade from a friend and while well meant, it has no magical properties. But the thought is there and I wish you all the best. Let me know about your TSH level and talk with your doctor about that sleep study and the PTH treatment. Hopefully those will help.

Cheers,
Ruth
you may be sleeping, but you probably aren't getting much in the way of quality sleep. A sleep study may help, especially as the pain medications can cause