Do you remember the “Hamster Dance”, that little ditty? You may remember it because your daughter danced to this and you giggle and smile because of the memories you have or perhaps you just remember it is an annoying song: either way you remember it. The same way we remember or visualize the hamster in the clear ball, running around for our amusement on the floor bumping into various objects, just to pause and go in another direction. This leads me to the elaborate hamster habitats that had the colorful tubes that connected with the clear spheres where the hamster could sit and look out. So what does this have to do with chronic diseases like CKD? Sometimes I feel like that hamster. Let me explain.
I think of my life with CKD as living in the hamster habitat: you are travelling down a tunnel enjoying the sights and anticipating what is ahead. Next thing you know, you are faced with a fork in the road: you are told you have a chronic disease which will include dialysis and or transplantation. Not only that, but within this, as it is part and parcel of the management of the disease, you will be subject to numerous blood tests, ultrasounds, biopsies, CTs, surgeries, and complications. This is of course meant to keep you well and give you the best quality of life possible considering what you are facing. Having CKD is a full time job, as is any chronic disease.
So, getting back to the hamster tunnels: here you are, forced to make a decision. Of course you can default, and make no decision, which means the disease and the health care system will make the necessary decisions. You are catapulted into the system: full speed ahead. All you know is that you are too young to stop living, so you proceed with the recommendations in the hope that you garner more time, a decent quality of life and the ability to continue with your life. Of course, each decision has its pro’s and cons as you can imagine.
One of my forks was deciding to go on the transplant list or not. Well, hell ya! Not too many people want to stay on dialysis or have dialysis if they can avoid it. I was very fortunate, I bypassed dialysis by about a week. We were just making plans to have the surgery for the fistula for dialysis, but I got the call! I remember it well, as I was in school with my daughter, helping in the classroom, when my cell rang. For those of you that have gone through this process, you know the feeling when you are waiting for that call. Every time the phone rings you wonder it this is it. I distinctly remember them asking me if I still wanted the kidney: of course I said yes. In retrospect, I wonder how many say no and why. Actually, I can understand why you may say no, as with any treatment there are pro’s and cons like I mentioned. With transplantation comes a whole new routine and a new set of game plans. Yes, it gives you a chance at a second life, but it comes with a price. Immunosuppression: that is one thing, you are now more susceptible to things that would normally be a few days of down time, but may land you in the hospital. Skin cancer, that’s another one as well as forever taking the required meds, getting blood tests, getting therapies for bone disease, etc. You’re second home is the hospital.
However, in all this, you meet some amazing people. When I was having some problems with my bone marrow (apparently it took a holiday and stopped working for a while) it required having transfusions: several. When you’d check in for your top up, there was always at least 4 others sitting there being transfused as well. You all have that “knowing” nod or smile. You assume your position, you automatically get that warm blanket which is as close to heaven as you can get you’re hemoglobin is 65! You feel like crap, you look like crap, and you are actually happy to be there. Its like when I got my transplant, the first thing I noticed when I woke post-op was that I felt warm!! Well, the same with transfusions: you feel better, warmer, and things like walking are no longer an effort. While sitting there, you usually converse a bit with the others, hear their stories. I always come away with a feeling of being fortunate, as there are always those that are fighting even worse battles.
Back to the hamster trails: so, you make a choice and off you go. You settle into your new life, make appointments for you blood work, add all your doctors appointments and their required testing routine, you live your life. During you travels through the habitat, you encounter those little clear plastic balls where you can sit and look out or hunker down, curl up and nap. To me, sitting inside and not being able to take part in something because you are just too wasted or feel nauseated, or your potassium is too high, or whatever, you watch the world go by. For me, this is hard. I have this desire and longing inside me to do things, experience things/people/events. After all, that is what life is for, right? Life is for the living right? Yes, but I have come to realize I have to somehow come to terms with this beast and its limitations. This is a difficult task. I so love to try new things, learn, explore and just “be there” to take in the sights, sounds, and the energies. I feel alive.
And, so it goes. I will keep travelling these tunnels and hope that there aren’t too many more forks and with the hopes of some new adventures yet to come. Maybe not the same kind I’m used to, but something new or something meaningful. More and more, that is what life is about. Life is for the living…Let’s just do it! Happy trails!