“Looking back there were indications I did not recognize. For one I was seeing doctors and eventually was hospitalized for severe anemia. Everyone seemed to expect they would find bleeding as the cause. At that time I had no idea at all that an important job of the kidneys is to tell the bone marrow to make red blood cells and the cause of my anemia was a sign of kidney failure.
For a time I was treated as an outpatient with Epogen shots that are very, very expensive. The way Medicare works I had to get a prescription and lab work to prove the need for the drug then take it to a doctor’s office for treatment. The huge copays eventually maxed out my credit card and I am still struggling to deal with the balance.
Eventually I had a mini stroke that took me to the ER. It may well have actually been a point where uremic toxicity became plain as there were no lasting effects of stroke. I was not at all mentally or emotionally prepared for the need to go on dialysis. In a very short period of time I had decisions to make about having a catheter put into my neck to allow dialysis and within days to agree to have an access created in my arm. The catheter had 3 lumen and as I walked the halls of the hospital people did stare at this tentacle waving around unrestrained. I also had to undergo a procedure to exchange that catheter for something more permanent with more distance between the entry point and my blood.
Catheters have a very high risk of serious infection that can easily kill. The vessels used for my access were on the small side and slow to grow. I confess that I should have exercised my arm more to help the growth along but eventually use of the access has improved its strength substantially. The day I had the catheter removed was a good one and was much more simple than expected.
I chose Satellite East San Jose because it meant that my doctor could come there conveniently and feel I was very lucky in my choice. I also did not expect that I had made a choice that would provide me with such a substantial team working not only on my health but to make the dialysis experience as pleasant and bearable as possible. Each person there seems to know of me even if not assigned to my treatment room. They are all friendly and always acknowledge me as a person. I cannot count the benefits received through my dietician, social worker, and the clinic manager. I am made to feel like more than a patient and that is something very important to me.”