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Barack Levin

Author: Barack Levin

Archive for the 'State of the Kidney' Category

Routine reports on how my kidneys are holding up (for now)

Extra Phosphorus

Posted by Barack Levin on 23rd March 2011

The kidneys are responsible for cleaning the body from toxins. They basically act like water filters. Blood runs through them and they filter all the filth out and get it out of the body in the urine. It is a pretty sophisticated system and even now, in the 21 century, human technology has not caught up with this marvelous natural design. Even the best dialysis machines still do not filter as effectively as the kidneys.

One of the toxins filtered out by the kidneys is a mineral called Phosphorus. I am not a medical professional so I have no idea what it does in the body, but I do know this – my kidneys do not filter it well and I have too much of it in my blood. I have already discovered a long time ago, that having too much of something in your body, creates horrible side effects. Phosphorus is not an exception.

Before surgery I had plenty of it in my body and the side effects were an itching feeling all over my body. It feels like ants crawling under your skin or better yet, as if you are covered in mosquito bites. The minute you start the scratch, you can not stop. It got to a point where I scratched myself so hard and so often, that I started bleeding. My skin broke and tracks of my finger nails were everywhere. I would get to a point where I would scratch myself in public without even noticing it. The worst was on my back, since there are points I could reach. It feels like burning sensation when you can provide relief to a certain area.

After the transplant, everything changed. The new kidney got read of this mineral and that ever lasting urge to scratch myself stopped almost over night.

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The Surgery

Posted by Barack Levin on 22nd March 2011

After many sleepless nights and tons of anxiety, the blessed day has finally arrived. March 15 would be the day that will change my life (again). My instructions were not to eat the night before, but I have completely lot my appetite already at 5PM the day before. As a matter of fact, even up to 5PM I barely touched anything. 

I think that the hardest task I had to perform that date was to sit with my wife and go with her over all of our financials in case I do not make it alive out of surgery. I was almost in tears.

March 15 arrived and they wheeled my donor to the operating room. 1 hour later, I was sedated as well. The next thing I remember was waking up in a bed with the light in my eyes. I signaled my family to cover my eyes. They were talking and I was signaling. I was tired and in and out of consciousness (until the drugs wear completely off). Even through the fog I was in and despite the pain I was in, I already started to feel great. I have immediately noticed that I do not have my regular headaches and that I am not cold.

The transplant was a success and 3 days later I was discharged home to complete my recovery.

Posted in State of the Kidney | 5 Comments »

Vomiting

Posted by Barack Levin on 10th January 2011

I have finally figured out what is the main cause for my recent vomiting. One of my blood pressure pills is called Labetalol. I started with a low dosage of 100mg twice a day but with me, no pill has ever had effect with low dosages and so quite rapidly the dosage increased and it now stands on the maximum allowed – 600mg twice a day. I take the pills in the morning and evening while take other pills also around mid day. The uneasiness in my stomach never happens in mid day, only in the morning and the evenings. I have experimented and took all of my other pills but the Labetalol and never had a problem.

So now, when I take these pills I make sure that my stomach is full with solid food (e.g. pasta, bread), wait for about 15 minutes and only than take the pills. That solved that problem and created a weight gain one, but I can live with that.

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It was only a bug

Posted by Barack Levin on 2nd January 2011

In the past few weeks I have started to feel great. Not just good – great as if all the terrible things I have had: the headaches, the chills, vomiting, fatigue and state of haze are completely gone. It is unbelievable but I reduced my sleeping time to only 8 hours a night, compared to the 12 minimum. I got my energy back, I can multi task again and over all feel like 2 or 3 years ago.

I start to believe that there was some kind of bug in my systems for the last 6 or so months and that this bug brought me down to my knees. So as a matter of fact, the symptoms I have had were not due to kidney failure but due to that bug.

That is of course great news because it means that my kidneys are not in the bad shape I thought they were and I still have some time to go before they completely fail.

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The Heavy Coat

Posted by Barack Levin on 14th December 2010

If you asked yourself how cold it is for a person with almost no kidney functionality, here is an example. On a daily basis I go out wearing long underpants and jeans. On top I wear long undershirt, a sweater, a wool sweater and my heavy duty coat. On my head I wear my wool ski hat. I am adding to the arsenal, starting tomorrow, a heavy duty scarf too. But this is of course no point of reference because many people wear many layers during the winter time. So here is the comparison.

My wife wore tonight her new flannel pajama. She had to take the dog out to do his thing. It was already around 7 and it was freezing cold outside all day long so you can only imagine it was even colder when she went out. She put on her my heavy duty coat (the one I bought specially for a ski trip we had in the past) and walked the dog in the street for about 20 minutes with her slippers on. When she got back she said something like this: “this coat is great. I did not even feel the cold”. That’s the difference between a normal functioning body and kidney failure body.

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Running on Fumes

Posted by Barack Levin on 12th December 2010

I wanted to give you an example what it means to live with only 14% kidneys functionality and how much strain it takes on the body. Yesterday, for my 40th birthday, my wife bought me a surprise present – a helicopter lesson. It is only 30 minutes but a lot of fun. There is a 15 minute introduction after which you board the tiny craft and control it all by yourself (with the instructor right next to you as a safe guard of course). You have to concentrate on the instruments and fly above somewhat familiar terrain.

As I said, all in all, about 45 minutes, but that was enough to take a toll on my weak body. The headache started forming mid flight and did not leave until I went to sleep. The whole afternoon I just laid on the sofa with no energy. Could barely move. Went to bed at 8 and slept for almost 12 hours. Woke up, played with the kids and at 10AM went back to sleep for 2 more hours and I am still exhausted.

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14 and counting

Posted by Barack Levin on 9th December 2010

That’s it for my kidneys. I have reached 14% kidney functionality. To my amazement, the last 2 weeks have been pretty good, in comparison of course of the last several months. Good is a comparative term, by good I mean that I do not have nausea anymore, no throwing up, no throbbing headaches and no more deep under the skin chills (even though the temperature here dropped to below 0). I am still tired but not as much but surprisingly have some energy to spare.  

But my latest blood test results leave no room for a second thought – my kidneys are about to fail. My Nephrologist started talking about dialysis and we are all hoping that the kidneys will hold on for at least 6 more weeks. By that time, my living donors will complete their evaluation and we can run through the operation. If there was ever a time in my life that I was hoping to jump on the operating table it is now. Life is simply unbearable any more. I keep my fingers crossed that my kidneys will cooperate with me, one last time, before giving up.

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Low Blood Red Cell Count

Posted by Barack Levin on 26th November 2010

One of the major problems that is a direct result of a kidney failure is low blood red cell count. The kidneys don’t only filter waste and fluids, they also have some other functions in the body; one of these functions is to produce a special hormone that controls the production of red cell in the body. The actual production of red blood cells is done in the bone marrow where the hormone is sent.

One of the functions of the red blood cells is to transport oxygen to the different body parts. When there is a low blood count it means that not enough oxygen reaches the different cells in the body and as a result weird things start to happen: constant fatigue, memory problems, inability to concentrate and more.

In my case, my blood count barely scrapes the minimum allowed which means less oxygen to the body and of course, all of the above mentioned side effects. But there is a solution. Actually, probably more than one. My doctor suggested a solution a long time ago. I can get hormone replacement weekly injections that will increase the blood count and with that the levels of oxygen. Back then it was not necessary but now I feel that it is an option I need to consider. I have also come up with another possible solution: oxygen tank. If I breathe pure oxygen, that might increase the levels as well. I have a meeting with my doctor next week and will definitely talk to him about these options, but last night I had another great idea.

I know that during Yoga and Meditation, there are some breathing exercises which help the body relax but at the same time work on inhaling and exhaling large amounts of air. May be I can use that to my benefit?

A short search on You Tube and I found some simple and basic breathing routines. I started working on them and today continued some more. I am happy to report that it seems to work. I no longer suffer from these side effects. I actually feel better today. I have not felt this way for weeks (probably months). I think that my new diet, the breathing exercise and the caffeinated drinks I am using help me maintain my sanity.

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What does it feel like?

Posted by Barack Levin on 23rd November 2010

I have been asked more than once, ok, so your kidney’s are at 20% but you look fine, you do not show any signs. You have no scars, no rashes, your hair is not falling,. There is nothing visible so how do you feel?

This is really a tough one because unless you are in my shoes you have no idea I am suffering from anything. One look at me only confirms it. I look pretty normal for a person my age. So I devised a little experiment for those of you out there who want to know how it feels to live with almost no kidneys, to find out what the effects on the body are.

Here it goes.

I am assuming you have two functioning lungs. If you do, let’s go through these steps. Take a big breath in. Take it in very slow. Make sure that every node in your lungs gets its share of oxygen. Do not take short cuts. Fill your lungs to their full capacity. Feel how your chest inflates with them. It is a great feeling isn’t it? Your lungs are at full capacity. Keep your breath in for 3 seconds. Enjoy the air in your body, feel how refreshed you are, how great of a feeling it is to fill your lungs. Now breathe out slowly but deliberately until you empty your lungs. Do it slowly and feel how the waste is living your body and how your lungs shrink. This whole cycle of breathing in, keeping your breath and blowing it out takes about 10 seconds.

Now, let’s try running the same cycle but in only 7 seconds. You will need to breathe in faster, hold your breath for barely 2 seconds and blow it out again. Your lungs will not be inflated to their full capacity. You do not have the same feeling as before. You have to rush things and your body does not like it. This cycle simulates your lungs at about 50% capacity. Let’s repeat the exercise but simulate the lungs at 20%.

Run through the same cycle one more time, but this time, instead of 7 seconds, make sure you complete the cycle in only 5. Have you noticed the difference? Do you feel how your body is not happy about this cycle?

Now try to live just 10 minutes this way and see how you function. Your basic functions immediately get interrupted: you can hardly speak, your body works harder, you waste energy just on keeping enough oxygen in your body, very shortly you will also hyperventilate. Basically this takes a toll on your body. There is no way you can function this way the whole day.

And now you know exactly how I feel like every minute of every day.

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Is it really cold out there

Posted by Barack Levin on 23rd November 2010

I am happy to report on another side effect that I am experiencing due to my failing kidneys. Now I am frozen all the time. It is unbearable. I am wearing long pants, sweaters, undershirts and I am still cold. At night, I am under several blankets and I am shivering. I try not to leave the house and stay next to my heater or fire place.

My wife, who saw me suffering so much, bought me an electric blanket. I can not even begin to describe how well it feels to sleep in bed and feel the warmth covering your body.

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Chili and meds do not mix up

Posted by Barack Levin on 23rd November 2010

My wife prepared spicy chili yesterday. One of my favorite dishes. She knows how to cook and she knows I like her cooking. I woke up this late morning after my usual 11 hour night sleep, these days anything less than that and I can not go throughout the day. It was already close to lunch time so I decided to skip breakfast and go directly to lunch. Warmed up the chili and ate it feeling all happy and warm on the inside. I do not take my meds on empty stomach any more for the fear of vomiting and thought that the chili would be a great buffer. Apparently not. Within minutes of taking my meds I started to feel that creepy crawling all over my body, sweat started forming on my forehead and my stomach was giving the signs that I am about to taste the chili one more time today in reverse order. I rushed to the kitchen to take my anti nausea pill and even managed to hold it in for about 10 minutes. But I guess, that did not do the trick and I ran outside to see chil comes to light once again.

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Restless Legs

Posted by Barack Levin on 21st November 2010

Last night was a terrible night. During the day I could already feel in coming. My blood pressure was high which meant a splitting headache. I usually do not take pain killers but last night the constant pounding did not leave me with any choice.

I got to bed at 9 PM. Instead of falling asleep instantly, my legs started to jitter uncontrollably. I simply could not stop them and obviously could not fall asleep. For 2 hours I tried to sleep in bed, on the sofa and in the guest room, But nothing. My legs did not give up and fought me. I was on the verge of crying.

Eventually after these 2 hours I have discovered that if I go to sleep sitting, my legs won’t bother me. And os I did and managed to sleep for 15 hours straight.

Posted in State of the Kidney | 6 Comments »

My little girl’s birthday

Posted by Barack Levin on 18th November 2010

The most frustrating decision I have had to make recently was to not attend my little girl’s birthday. I love her dearly and wish all the best for her, however, on her birthday at least 10 of her friends are coming to our house. It is December and I fear for my life. I am afraid that one of the other kids might have a virus or worth, the flu that could simply kill me.

I decided not to take any chances and go out to a movie with a friend instead.

Posted in State of the Kidney | 2 Comments »

Frustration

Posted by Barack Levin on 13th November 2010

One of the most frustration things I face right now is my inability to join my kids in their class activities. I am so afraid that one of the little boogers in their class might carry of virus which will invade my system and kill my kidneys. And so I have decided to make a conscious decision and cut almost all interaction I have with kids which means that I can not join my kids for their holiday celebrations and other activities.

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At the MRI

Posted by Barack Levin on 5th November 2010

Today was the final step for my evaluation. This time it was MRI and reviewing the results from the while process to determine where I stand and if my body can withstand the transplant. As usual, before I could do anything they stick an IV up my arm. As always, when they inject me with the contrast I get a wet sensation in my hand and a bitter taste in my mouth. They take me to the MRI room, lay me on the table and insert me into a tight tube. I am not claustrophobic but trust me, after getting in there, I became one. Heart is racing and sweat beads all over the place. I took some deep breaths and calmed myself down. Since the MRI machine is so loud, they put headphones on me and streamed some easy listening music. I kid you not, but one of the songs was about:” I do not want to die, I want to live”. I thought it was an hilarious coincidence.

From there a quick stop at the CT scan for a short heart scan and I am on my way to meet the doctor for the results. So far so good and he says results are very promising. Almost everything is within normal range. But the really good news are the anti-bodies – 0 which makes the transplant easy and feasible unless something is very wrong with my donor’s blood.

The exception to the good results are some calcification in my lung but those are probably from an old lung infection or something and a lung doctor should clear this up easily. This should be the last hurdle on my way to transplant.

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Caffeinated Drinks

Posted by Barack Levin on 4th November 2010

I am tired all the time. My nephrologist told me it is perfectly normal for a kidney in my situation. When I asked if I could try any energy drinks he disallowed it stating that they contain lots of potassium that is harmful to me. With that I had to drag myself through life, until I got an idea a few days ago.

I decided to drink soda. If you know me, you already know that I am very much against it. I stopped drinking this stuff before my son was born and me and my wife never buy or bring it in, however, I did remember that soda has caffeine in it and since I do not like coffee, I decided to give it a try.

So 2 days ago I drank my first bottle. I was up until 3 AM. I have not felt better for weeks. I was energetic. The next day I decided to try it one more time, and the same results. Did not sleep the whole night. The third and fourth day I decided not to drink it all and immediately felt how my body begs for sleep all day long.

I think that from now until transplant day I will drink a glass of soda a day early in the morning to get some caffeine in me so that I can function.

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5 second memory

Posted by Barack Levin on 1st November 2010

I have realized that recently I can not keep a thought for more than a few seconds, something that I have never experienced in the past. For example, my wife can tell me: “Can you change the light bulb in the bedroom?” I say yes, and as I get myself ready to do the task, turning off the TV and putting on my shoes, I no longer remember what she asked me to do. I need to actually concentrate on our conversation to remember.

The same goes if I am remembered to answer a client’s email while I take a shower. I make a mental note to myself but as soon as I finish showering, I have completely forgotten about the whole ordeal. I have no doubt it is all due to my failing kidneys. I think that the load on the body and mind is so great that memory simply slips away.

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Jaw Aches

Posted by Barack Levin on 23rd October 2010

Several months ago I started experiencing a new type of pain – jaw pain. It starts right under the bottom jaw line and radiates backward. I got to a point that when I took a bite my jaw hurt to the point of almost tears. I could not chew anything hard. I was about to go to my doctor to check it out. Who knows, may be it is cancer? But before I had the chance, I had my bi-annual cleaning at my dentist. I sat down and he started examining me and almost immediately told me that I am grinding my teeth. I mentioned the pain I have been having and he confirmed that my jaw muscles are tensed. He told me that at night I might be putting so much pressure on my teeth that my muscles suffer the consequences. He recommended a mouth guard and I gave it a try.

Within 2 weeks the pain subsided and two weeks after it was gone.

I can only imagine that all the stress I have been having shortly with my disease and the transplant finally took its toll and came out in a form of grinding my teeth. Who would have guessed?

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Stress Test

Posted by Barack Levin on 22nd October 2010

As part of my kidney evaluation, I had my second appointment today. I had to go through a stress test. The test is done to determine if the heart’s strong enough for the transplant and recovery and the stress part of it is done to make sure it will stand the load of the surgery and the recovery after. Such tests are usually done on the treadmill and as they slowly increase the speed the heart rate goes up as well and the tests can be done. Since I am expected to have a renal failure, such a test is not recommended for me and instead I am injected with a drug which simulates stress on the heart.

Before the test began, I was given some radioactive injection that will help the technician better take a 3D scan of my heart and I was ready for my stress test. I did not eat for about 10 hours and I was ready to get it over with asap. The drug was injected.

Several seconds after I feel my heart’s rhythm starts increasing but the increase is not gradual, it is sudden. Boom, it is doubled. Like flooring the gas pedal in a top notch race car. Within a few seconds you are doing over a 100 MPH. Almost immediately I start to sweat, my head spins and I fee dizzy as if I have just finished running a marathon. I take deep breaths but nothing helps. My heart is racing and I can not control it. Nausea starts pouring in. I feel how my stomach’s muscles are contracting. My vision is now very focused on the stress my body is going through. It only takes a few minutes, but I feel that I lost control over my body entirely. Within 3 or 4 minutes I feel how my heart is slowing down again. Finally. The sweat is gone. I take a look at the monitor. The heart rate went from 58 to 101. No wonder I felt terrible.

I go through some more heart imaging and barely get to my car. It feels as if I have just finished a grueling 12 hour work day. My eyes can barley open. As I drive I feel the urge to vomit (a common theme recently). I stop on the side of the highway but nothing comes out. I get home and crash on the bed for 2.5 hours.  I think I did not move the whole time. Every once in a while I would wake up thinking I could continue with my daily routine, but my feet feel like they are made out of lead and I decide against it.

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Milk

Posted by Barack Levin on 14th October 2010

As the kidney’s deteriorate, bizarre things start to happen. I have already reported some, but here is a new exciting side effect. Milk does not taste like milk anymore. The other day I prepared some milk and cereal. Took a spoonful and almost spit everything back. The milk tasted sour. I warned my wife about it but she did not believe me because she bought the milk a day before. She tasted it and reported back that everything is fine. I tried to give it another shot – but no, it tastes sour. A few days later I tried to taste milk she brought home and got the same results. I even tried chocolate milk but same thing. Unfortunately, now I am refrained from drinking milk.

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