God forbid my life end up in this manner, but it was brought to my attention that I should take a moment to look at my life a little differently; I believe the term was “realistically”. Maybe I am still in denial, or my hope has blinded me… either way I struggle with accepting on a daily basis the cold hard reality that one day(hopefully as long from now as possible) I will be a widow and single mother.
You see, my husband is one of 600,00 people in the United States who suffers from a genetic kidney disease called Polycystic Kidney Disease (PKD). It happens to be the nations leading life threatening genetic disease and left without a cure it continues to affect entire families across the United States. Looking at my 6’7, 340lb husband you would not believe that he was slowing dying. But yes, it is very hard for me to sit here and truthfully tell you that I see myself as a bitchy old woman nagging my lazy old husband on our 50th wedding anniversary. Just over 50% of patients with my husbands kidney disease have end-stage renal disease by the age of 60. This means their kidneys have completely shut down and so has the rest of their body because if the kidneys don’t work, neither does anything else. This particular side effect of PKD does not happen over night either. Over time the cysts multiply and grow on the kidneys, over time various parts of the body suffer and react to the pain and effects of these cysts; it is a slow suffocation of your entire body.
Someone once asked me, “How does this disease affect his day-to-day life?” and I found myself playing it down, a lot. I was so quick to say, “Well it doesn’t really affect him that much. He has good kidney functioning right now and he has not had to report to a Nephrologist yet. His kidney’s just hurt him every now and then.” I’ve never realized what a blatant lie that is until now. The reality is he suffers every minute, every day. He wakes up in pain, spends 12hours a day working and walking around in pain and goes to bed at night in pain. This back and side-flank pain is the most common symptom of PKD. Another common symptom Eric suffers from almost daily is headaches. A few years back he was going in and out of the ER getting MRI’s done to check for aneurysms. His grandfather suffered from a brain aneurysm (he also had PKD) and according to the research patients with a family history, aneurysms will typically occur before the age of 50. Back aches and headaches are one thing but brain aneurysms are another. I am terrified, like most people who suffer intracranial hemorrhages, that we will go to sleep one night and he just wont wake up. My heart hollows at the thought. Granted, if given a choice that’s certainly a much less painful way to die than going through the entire effects of end-stage renal disease…
He is also at higher risks of developing heart problems because of this disease. Cardiac valve abnormalities occur in 25% of patients with PKD. This scares me because of his weight. Although his doctor assures me his cardiovascular system is in good health and his cholesterol levels are great I still worry. One of his main symptoms of the disease; high blood pressure, is a major factor in developing valve problems. If he doesn’t remember to take all of his pills for his blood pressure he wont be able to keep the levels down. Studies have shown that keeping the blood pressure at or below 130/80 can help slow the progression of cyst growth. These little cysts are filled with fluid, harmless fluid, however they can rupture and cause bleeding or get infections that are extremely hard to treat because most antibiotics can’t reach the cysts. Thankfully Eric has not had an infection but has had severe kidney pain and blood in his urine which was then believed to have been a ruptured cyst. Kidney stones and urinary tract infections are but just a few more examples of complications caused by PKD.
Eric grew up playing football and was raised with the no pain no gain mentality and refuses to let a little pain bring him down; pain is good.. Even to this day if he, his brother or his dad are working on a project and they don’t stub a toe, smash a finger or cut something and draw blood… they feel like it was done right. In their mind’s eye the presence of blood is a good luck charm and they rejoice like they just received a blessing from the gods. I don’t think it will ever make sense to me. But in the end Eric has created this unbreakable, unwavering persona. Nothing can take him down, nothing can hurt him or make him weak. But like every great warrior he has an Achilles heal; his kidneys. A poke from our 3-year-old in his side can suddenly have him on his knees doubled over in pain; it is a very unnerving sight to see. When he stretches (just a simple yawn and stretch) but then instantly drops to the floor because he is dizzy and can’t stand, when he gets a cold and his kidneys throb with pain, when his hands or arms shake with unexplained tremors…. these are times I see the reality of his disease. He is not fine.
I see why one would want to make sure that I am accepting reality and not planning some big family vacation 25 years from now because Eric will probably be face to face with a transplant, if not possibly already recovering from one. Hopefully at this point he has continued to avoid many of the possible complications that others with his disease suffer from. But to imagine my life without him? I honestly do not think I am ready for that. I hope that he will one day find the motivation to maintain a healthier diet, exercise, take his pills regularly, monitor his blood pressure, lose weight if doctors ask him to….that one day he will fight for his own life. Until that day and maybe even after I refuse to let go. I am an advocate for my family because they can not. My children don’t understand, heck I don’t think even Eric understands half of whats going on with him because he wont educate himself or get involved. Sure it’s a lot of stress on my part…but honestly doing nothing would feel worse. I am prepared. I am ready to take action. Because I have done the research and have gotten involved I know what symptoms to look for in my children, I know how to stick to Tylenol products for my family to help protect our kidneys, I know what foods are easier for the kidney’s to digest and serve them as often as I can, I am prepared to make an educated decision with Eric on hemodialysis or peritoneal dialysis if the time ever came, I know which hospitals I would recommend he choose for a transplant to be performed at, I even know wich nephrologist are good, were he to ask me my opinion. I can not control this situation, I can not single-handedly cure this disease, I can’t even force people to share my passion and help me fight but what I can do is be prepared.
Dont think for one minute that I don’t believe, hope, imagine, dreamthat 42 years from now we will be celebrating our 50th wedding anniversary and surrounded by family and friends non the less…because I do. I have faith that one day my time, money and effort has helped find a cure. I have faith that God will protect my family and has great things in store for us…for my husband….for me. I believe that even if we dont find a cure that Eric will be able to receive a kidney from someone as willing to donate as I was to his father and that his surgery goes just as well if not better. I pray each day that his father’s health and success will be but a fraction of Eric’s when he is that age and older. But each life is different and all I have is hope; I have faith that it’s enough.