Now, it's hyperkalemia

I received my latest lab results last Wednesday, and my potassium is now elevated. The normal range is 3.5 – 5.3, but my last results were 5.7.

I have usually had no problems processing potassium. Even when I was on dialysis, my potassium levels were normal. But now that I have a new kidney, it’s a bit out of whack.

I believe an elevated potassium level is called Hyperkalemia. High potassium levels primarily affect a person’s heart; that is why it can be a concern. Per Wikipedia, “extreme Hyperkalemia is a medical emergency due to the risk of potentially fatal abnormal heart rhythms” – it can be life threatening.

I have not been officially diagnosed with Hyperkalemia yet, but I have been advised to adhere to a strict low potassium diet.  It is somewhat frustrating, because some foods that are high in potassium like dairy were recommended to me because they are also high in phosphorus, and my phosphorus is still low. I guess I just have to find a balance.

That said, I suspect that my elevated potassium levels are due to one of the immunosuppressant drugs. Tacrolimus, more commonly known as Prograf, has been known to increase potassium in the blood. As I suspected, my Tacrolimus dosage was just reduced last Thursday.  With these changes, hopefully, my next potassium lab results will be better.

Fingers crossed. 'Will see the results of these changes in the lab results tomorrow.

Now, for a brief comedy relief....

Hubby:  What are you up to? 

Me:       Just took a pain pill 

Hubby:  Is it working? 

Me:       No, you're still here. 

BAZINGA! Just kidding, he's a real sweetie. 

Now, back to our regularly scheduled programming.

Missing Aikido

One of my disappointments with having a kidney transplant was not being able to train in Aikido while in recovery. I was very close to my Nidan test (second degree black belt) and felt good about the material. In my last class, Sensei asked me to demonstrate how to do counter-attacks from two different attacks. I was able to do them successfully. My friends said that I looked ready. Little did I know that that was my last class before surgery.

Now, I am on sabbatical.

I am not even sure if I can train again.

Some people have said that I may need to quit my martial arts training after I get a kidney. Others (nurses, teachers) say that being back on the mat is possible. Aikido is unique in this instance because it is generally not a full contact martial art. Sure, we occasionally punch or strike, but if one does the techniques correctly, the strike is avoided.

I miss being on the mat, and I hope to be back on it as soon as I am ready. I will use my sabbatical to really get to know and organize the material for my test. By the time I am back, I will be mentally ready. Physically? I hope so.

Me on my Shodan (1st degree black belt test). Nidan next?

If that does not happen, I think I need to be ready for the next chapter of my life. Aikido has taught me to be present, be in the moment. In the last seminar that I attended in our dojo, our Division Leader, Pat Hendricks Sensei had brought her calligraphy as a present to our sensei. One of it is “Founder,” and she was hoping that it would inspire us to find our own niche in Aikido. Maybe that will be my path.

Onegai shimasu.

Bye bye Binders, Hello New Meds

Adios binders!

I boxed my phosphorus binders today. I am still not used to not taking them during each meal. I used to take 6 binders per meal, and these pills were huge. They are almost like a small side dish. These pills are so huge that I have choked on two or three occasions. Also, you have to take these with something liquid, so taking the binders almost used up my fluid quota for the day.

I am so glad I am not taking binders anymore.

That said, I have a new set of medications to get used to. The most important of these medications are the anti-rejection and anti-infection medications. The Anti-Rejection medicines are important for the new kidney to be accepted by the body. For the recipient’s body, the new kidney is a foreign substance, and without the anti-rejection meds, my body will fight the new kidney. By taking anti-rejection meds, the new kidney is accepted. The side effects include my immune system being lowered. Any bug that may be normal for a non-transplanted person could be disastrous for a transplant recipient.

Hola New Meds and My Big Fat Diary - ugh!

The Anti-Infection meds do exactly what it says: prevents infections. I take one for bacteria and one for virus. I am wondering if I should also take the anti-fungal since I love being outdoors.

The rest of them are Maintenance meds: Aspirin, vitamins, Pepsid, stool softeners (believe me – this is needed.), high blood pressure meds, and cholesterol lowering drugs (statins). Apparently, statins are important because a side effect of one of the anti-rejection meds is that it will increase your cholesterol. I, admittedly, am not a big fan of statins, as they have their own miserable side effects. Before the transplant, I was taking highly refined prescription fish oil to lower my cholesterol and triglycerides. I prefer that approach, but the doctors seem to be set on a low-dose of statins.

This does not include my “magic” pain pills. I primarily use generic extra-strength Acetaminophen (Tylenol), but when my pain level reaches to about 4 or 5 (out of 10), I go for the big guns.

UC Davis is very well organized. For example, they gave me big fat diary to keep track of my medications. Believe me, I need it. Based on my twice-a-week lab results, they are still changing the dosage on one of my anti-rejection medications and when they do, I have to be on top of it.

All in all, like any change, taking these new meds is an adjustment. I have been fortunate that I am not going through nausea or anything horrible. Also, although I seem to be taking more types of medications, I feel that the volume is less. With six binders and two fish oil pills per meal plus vitamins and blood pressure meds, my medicine container was almost overflowing. Now at least, it’s only about a third full, and rumor has it that my meds will decrease over time.

Woo hoo!

Sleep

Meow: She sleeps 16 hours per day.

Just like my cat, I have been sleeping and napping a lot these days, maybe because I feel tired most of the time. Last Monday, I needed to go to the labs to get a number of tests done. The labs were just an easy 15 minutes from our house, but this time around, it seemed like a long way. After that trip, I felt that I used up all my energy. Everything else was a big effort: getting water, taking my meds, showering. What a big difference from the Type A person that I have always been. It’s rather scary how fragile we humans really are.

The following Wednesday, I had a chance to take a short deep nap after lunch. After I woke up, I felt rejuvenated. I felt that I could tackle the world again, although I was not sure how long.

I used to think that sleep was a necessary evil.  With a good chunk of my week spent in dialysis, I hated wasting time, and I would get furious if some unforeseen issue threw me off my schedule. As a result, sleep was something I never got enough of. I used to get six hours a night Mondays through Saturdays and maybe seven to eight hours on Sundays.

Now, I know that I was mistaken. Hopefully, since I will not be in dialysis three nights per week, I can get home at a more reasonable time, and get more sleep.

For more benefits of sleep, here’s an article on Health.com. 

Sweet dreams.

Hypophosphatemia

Not too long ago, I was diagnosed with Hyperphosphatemia or High-levels of Phosphorus. I was very perplexed because my diet almost had no phosphorus in it – no dairy, no high fiber foods, no cheese (except for cream cheese), almost no nuts, and limited protein. The nurse and the nutritionist at dialysis kept nagging me about my increasing phosphorus levels. At the end, I found my diet was not the culprit, but we still increased my binders.

This week, we had our first transplant follow-up visit and the pharmacist declared that my phosphorus was too low. TOO LOW! I think this is called Hypophosphatemia. Hubby and I found that extremely funny because not long ago, we were having the opposite argument. She said that low levels of phosphorus may cause tiredness, which is what I am experiencing. She also said that if it does not increase, she might prescribe phosphorus supplements to me. What a difference a new kidney makes!!!

Our version of Phosphorus Supplements: Yummy!

So, I am making an effort to have a bit more phosphorus in my life, but not too much since we know what the opposite means. After that visit, Hubby bought us two ice cream bars! I have not had one of those in a very, very long time, and neither has he! We both enjoyed each bite, and he promised to get a pint of Haagen-Daz during his next trip for groceries (Note: he’s never bought ice cream before).

This week, I also enjoyed a generous amount of peanut butter with my Pain Perdu (ok – it’s just French toast, watched way too much Food Network yesterday). I did have to make it with rice milk because one of my anti-rejection medications require that I do not have dairy two hours before and after taking it (more on this later). Guess what, no naps that day! I was able to make my own lunch with little help! I think it is working. I am even going back to my phosphorus-laced Aveeno moisturizer with soy.

My new motto: An apple and ice cream a day takes the doctor away!

My New Full-Time Job

We had our first follow-up visit last Tuesday. Since this was our first visit, we met with everyone: the social worker, the nephrologist, the dietician, and the pharmacist. We reviewed how I am feeling, my stitches, my general health, my diet, and my medications, including any changes in dosage. It was a pretty long visit: three hours. Overall, they said that I am doing really well.

The social worker reminded me that my new full-time job is to recover. I mentioned to her that I have been frustrated as I am moving slow, taking naps in the middle of the day, have no appetite and sleeping early. This is very unlike me; I am usually a Type A person – always on the Go. Dialysis had slowed me down, but every other day, I had my energy back: I worked full time, baked or cooked during the weekends, went to aikido class two or three times a week, attended a twice a year hula dancing weekend seminar, went to the gym two times a week, and enjoyed skiing during the winters. Now, I can barely get a full day in – Very frustrating!

She reminded me that I probably just went through the most major surgery: kidney transplants can be more complex than even heart transplants because the pipes are much smaller, plus your core is cut open. Recovery time is really important. Without allowing myself a proper recovery time, it may be even for my recovery. After that, I can go back to going 110% again.

So my full-time job now is to recover: drink, pee, and recover.

I guess I can’t be a full-time blogger either.