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.

Back Home

I was discharged from the hospital two days ago and was looking forward to coming back home. It was Superbowl Sunday, and I was looking forward to enjoying the game, have some chips, and cheer my team.

The transplant center is about 2 hours away from home, and the trip back was exhausting.  I was very surprised because we’ve taken this trip many times – often for something fun like skiing or a two-day dance workshop and now, I was tired just sitting in the shotgun seat. At this point, I can’t even imagine walking one block – and I was doing great training for the next Kidney Walk!!!

I did see some of the game, but did not have my usual energy. No cheering, no fighting with the referees – in fact, I think I dozed off and almost missed the half-time show.

One of the biggest adjustments at home is how I interact with my kitty cat/baby/daughter, Meow. One of the nurses said that we probably should get rid of her, but that is not an option. Meow has been my angel through this process – along with my Hubby - she saved me in my saddest times. Meow, Hubby, and I – we are ohana – family: No one gets left behind or forgotten (From the Disney movie "Lilo and Stitch").

The reason that cats are risky during the recovery process is that their feces carry a fungus that may be dangerous to the immune system. Transplant patients have lowered immune systems, so that the body can accept the new organ. A cold or flu, especially in the first few weeks of recovery, may cause the kidney to be rejected.

With this big change in our lives, everyone will need to make adjustments, including Meow. She cannot come to bed with us or even sleep in bed when we are not there. She was my morning alarm - she would jump in bed on top of me and meow her little heart out. Now, she will need to do it from outside the bedroom door, at least for the first month. I am wearing a mask every time I pass the litter box and sometimes when I am on the couch with her.  Meow and I are not too happy with it. At least, I am back home.

Transplant Finally!

After 5 years of waiting, I am a proud and happy recipient of a healthy kidney.

The transplant process was very stressful, not only to me, but also my Husband and to a certain extent, our kitty cat. There were a lot of unknowns including the possibility that the transplant would not be successful. Don't get me wrong: kidney transplants have a high success rate, like 95%. Being me, what it I were one of the 5%. 

But I was not! I survived. After 5 hours of surgery - none of which I remember, thanks to the power of anestisia, I was surprised when I woke up groggy in the post-op room. I was barely conscious. I remember seeing one of the unit's doctors, Aida, the post-op nurse, an Asian guy in scrubs, possibly another doctor, and Hubby!

That was only the tip of the iceberg. Recovery period, I think is tougher, mostly because you're conscious this time around and you need to participate. Also, you have to deal with a lot of attachments to your body: you have catheters in to collect your pee (no lie! That is probably the most inconvenient), a catheter to drain fluids around your kidney during surgery, AND an IV in your neck! I feel like a Borg (Star Trek reference).

After surgery, you also have to eat a clear liguid diet. Reason is your body was put to sleep so you need to give your digestive time to wake up.

Once you start producing gas, then you know your digestive system is starting to wake up. By the way, this is no ordinary gas: This is like 100x your normal gas. For women, it's like your menstrual cramps - only 10x worse; your significant other will get 20x the usual retribution.

Once you hear grumblings and you start farting, then you can eat solid food. But what is the use, you do not have much of an appetite anyway, because you hurt all over! I only had four bites of real food every meal; the first three solid meals and that Ceasar salad with 1000 island dressing (what?) didn't look at all appealing. When I did get my appetite back, I was hungry! I think that is the real indication. I almost finished my entire plate.

I think the main reason that you lose appetite and energy is you hurt all over. That was major, major surgery! You had your guts open, your abs cut. It has got to hurt. Part of the recovery program is to walk around the ward: that first day, I could barely get out of bed. My right leg is stiff, my entire right side is sore. I can't even turn over. It's the kind of pain that makes you question why you are doing this.

In observing other patients, I noticed that they are not shy about asking for pain pills. I am not a fan of pain pills, but I think this time, it's an exception. After a day of struggling with movement, I asked the doctors and they adviced to get pain pills. Yes, it worked! I did a total of 18 laps around the ward yesterday (pills and listening to my iPod worked). I just need to be aware and not be dependent on it - now, I can see why some folks do.

I am still here at the hospital, but I think I still have a few days and a few more adventures and misadventures.  Right now my main concern is where I'll be watching the SuperBowl with Hubby.

The call

We were woken up at 2 am yesterday morning with a call from UC Davis. It's my kidney! I am the primary candidate for it!

It's the call that we've been waiting for.

Things started to go through my mind: Do I really want a kidney? Where is my "go" bag? What will life after a kidney look like? We can travel again. I can pursue a Ph.D. Can I still practice aikido? On and on... My Hubby and I had trouble going back to sleep. It was exciting and scary at the same time.

UCD was going call in the morning after they had confirmed with my doctors that I am fit for surgery.  I contacted my manager to let her know what is going on and that I would not be coming to work in the morning.  I wanted to use that time to prepare for the surgery and being in the hospital for an extended time. There were things to do: get money, fill out the disability form, take care of Meow, wrap up work.

But no calls came. We waited and waited and still no calls.  I think the process of waiting is more excruciating. You never know when its going to happen. I worked almost half the day and still no calls. I don't even know if I am supposed to eat.

In talking to the charge nurse at my dialysis center, she shared with me that the kidney may still need to be removed. Also, it may still need to travel - it may be across the country.

So we wait...I even went to dialysis, perhaps for the last time. It's somewhat bittersweet thinking that that may be the last time two huge needles will be stuck in my arm.

We both hope that we both can get a good night sleep tonight, and tomorrow brings better news.

Good night and good luck (to me)!