Getting the Ball Rolling

January 2006, my sister went from perfect health to blindness, malignant hypertension, and end stage renal (kidney) failure. This happened pretty much out of the blue! Once the doctors figured out what was causing the blindness, they were able to fix that problem and now she is back to 20/20 vision. Her malignant hypertension is not curable but can be controlled for the most part with medicine and diet. She has to monitor her blood pressure several times a day and keep a chart for the sake of documentation. The renal failure is irreversible ~ caused by a disease called IgA Nephropathy. Most likely, the doctors will never know what caused this disease but it has altered my sister's life (and the rest of our families' lives) forever.

My sister has a team of at least three primary doctors working on her case at all times; experts are also frequently called in as needed to deal with the side effects of this disease, the medicines used to treat it, and the strict dietary requirement of an end stage renal patient. (If you ever get tired of your own diet, you may want to do a search on renal diets and see what these patients can and cannot eat. It will make you thankful for what your diet allows!)

My sister is far from a textbook case when it comes to IgA Nephropathy which makes her situation even that much more difficult. Just as soon as we think she has passed the point of no return, her body rebounds. This "frustrates" my sister, our family, and her doctors as it makes planning her medical future difficult; the game plan constantly changes. (Not that any of us are looking forward to what the medical future holds for her nor are we anxious to proceed - but it puts us all on a psychological and emotional roller coaster. We prepare for one thing and then take a 180 degree turn due to her body's inconsistencies.) Ultimately, she will need to go on dialysis and/or become a kidney transplant recipient.

Dialysis is less than ideal but it beats the alternative of death. It apparently can be quite painful and leaves the patient feeling limp like a dishrag - which isn't much different than how my sister feels most days. Some of the dialysis facilities leave a lot to be desired and my sister is concerned about being in there so long stuck around chronic complainers. Understandable but certainly a buzz killer - especially when she is fighting each day to hold her head up high and focus on hope. She also has the option of doing dialysis at home but it is a much longer process and she would be stuck at home until it is done. It requires more nursing skills on her part - and like my mother, my sister never wanted to be a nurse. (God bless her! At this point - she has to give herself shots 3 times a week and putting the needle in her thigh is almost more than she can bear. Not to mention knowing that as she pushes the medicine into her muscle, it is going to burn intensely! More psychological games!)

The other option is a kidney transplant. While neither of these options are something to look forward to, it seems a transplant would offer her more of her old life back. She obviously would have to treat her transplanted kidney kindly in an effort to prolong its life but she would be able to eat more regularly again, drink water without reservation (which she loves) and avoid some of the health issues that result from this bizarre renal diet. There are several members of our family who would like to be considered as potential kidney donors but we can't seem to get clear facts on the requirements. And either her doctors don't know or they don't want to share what they know with us because they are not telling. We know that LifeLink would be the organization coordinating the potential transplant but we were always under the impression that she could not be referred to LifeLink until she went on dialysis.

I am happy to announce that amongst this cloud of darkness, a ray of sunshine is beaming through. The referral process to LifeLink has begun! She has already had an educational appointment and this coming Wednesday, Valentine's Day (there has got to be some irony in this) she has a full day appointment with LifeLink. The transplant process is a LONG process and this is just the beginning! But I believe we are getting close to getting the answers we need/want and can soon start the screening process to identify any potential donors matches from within our family!

So if you find yourself in the midst of a happy dance, would you do a step or two for my sister and for all of us? The ball has finally started rolling!