CHRONIC POSITIVITY – Life with Polycystic Kidney Disease

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. Vitals: 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.

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.

�

Not much to report today, as everything is status quo for the most part. My weight and bp are slightly up; I continue to be amazed at how dependant my BP is on small variations in weight.� Ins and outs are close to even, and still no fever (not that I want or expect it).� Updates posted on Daily Vitals.

I’m still sleeping in the recliner, because when I lay flat, it puts a lot of pressure on my incision, and is uncomfortable. I tried again last night, and it’s not as bad as before, but still not yet doable.

I was a little concerned yesterday, because my urine was more dark than usual. Probably because I had diarrhea the day before, and was a little “dry”. It got better throughout the day as I drank more.

I had labs yesterday, but they won’t be back until today, because I had them drawn at a satellite clinic, and the courier probably didn’t pick them up until the end of the day. I’ll sent a message to the Transplant Nurse to check on them, and will probably hear back later today when the Prograf level is back. I still don’t have Monday’s labs available on line. I can somewhat understand, as they all go to one doctor, and he signs off on them. I’m sure he has a lot of them to do, in addition�to his other responsibilities. As long as I’m told the important ones (creatinine, BUN, magnesium, white count, hemoglobin, phosphorous, and Prograf level), then I don’t mind so much.

I walked to the clinic yesterday, and it was even easier than the week before. The phlebotimist there is great; she has gotten blood on the first “stick” both times I went there. With my veins, that’s no small feat!

The weather here has been rainy and cold, so my plans for a daily walk went by the wayside. My leg edema is still there, but noticeably improved. My AFO’s�(ankle foot orthosis aka splint or leg brace)�went on much easier.

No diarrhea yesterday, as I took the Imodium the night before (none since). I did have 800 mg of the Magnesium Oxide with lunch and 400 mg at bedtime. Yes, I’m supposed to take 800 mg twice a day, but what good is it if it’s causing profuse diarrhea? I will hopefully build up to the correct dose.�

Not much to report today, as everything is status quo for the most part. My weight and bp are slightly up; I continue to be amazed at how dependant my BP is on small variations in weight.  Ins and outs are close to even, and still no fever (not that I want or expect it).  Updates posted on Daily Vitals.

I’m still sleeping in the recliner, because when I lay flat, it puts a lot of pressure on my incision, and is uncomfortable. I tried again last night, and it’s not as bad as before, but still not yet doable.

I was a little concerned yesterday, because my urine was more dark than usual. Probably because I had diarrhea the day before, and was a little “dry”. It got better throughout the day as I drank more.

I had labs yesterday, but they won’t be back until today, because I had them drawn at a satellite clinic, and the courier probably didn’t pick them up until the end of the day. I’ll sent a message to the Transplant Nurse to check on them, and will probably hear back later today when the Prograf level is back. I still don’t have Monday’s labs available on line. I can somewhat understand, as they all go to one doctor, and he signs off on them. I’m sure he has a lot of them to do, in addition to his other responsibilities. As long as I’m told the important ones (creatinine, BUN, magnesium, white count, hemoglobin, phosphorous, and Prograf level), then I don’t mind so much.

I walked to the clinic yesterday, and it was even easier than the week before. The phlebotimist there is great; she has gotten blood on the first “stick” both times I went there. With my veins, that’s no small feat!

The weather here has been rainy and cold, so my plans for a daily walk went by the wayside. My leg edema is still there, but noticeably improved. My AFO’s (ankle foot orthosis aka splint or leg brace) went on much easier.

No diarrhea yesterday, as I took the Imodium the night before (none since). I did have 800 mg of the Magnesium Oxide with lunch and 400 mg at bedtime. Yes, I’m supposed to take 800 mg twice a day, but what good is it if it’s causing profuse diarrhea? I will hopefully build up to the correct dose. 

�

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).

Cross posted at WordPress (and Daily Vital Signs�are updated and available there).

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).

If you are an adult, and want to get your parts rearranged, that’s your business (as long as it’s not taxpayer funded). But there is a doctor at Boston Children’s that has opened a clinic for Transgendered children, SOME AS YOUNG AS 7!

He’s apparently not a surgeon;  he offers:

counseling and drugs that delay the onset of puberty. The drugs stop the natural flood of hormones that would make it difficult to have a sex alteration later in life, allowing patients more time to decide whether they want to make the change…Spack also offers some teenagers hormone therapy, a drastic step that changes the way they grow and develop. While the effects of drug treatments can be stopped, long-term hormone therapy can be irreversible, causing permanent infertility in both sexes.

Sorry, but what is this doing to them long-term? Obviously, this is a parental decision, as a young child is intellectually incapable of making this decision.

It’s hard to believe that a hospital with Boston Children’s stature would even consider this, in light of the potential adverse effects, as well as the fact that this is not a life-threatening condition.

The full article is here.

Comments?

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 on my WordPress blog and will update it at least once per day. I will post a link on this sidebar.�

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.�

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.