July 29, 2010 Nephrology appt
Good afternoon my good friends, It really got busy here at work for a minute I had to do something for my co worker Arlene who is vacationing in North Carolina this week. Here I was waiting for her to do it and realized, that I am her backup. Just a bunch of letters for nurse orientation next week, no big deal - done and gone to the mail. but now I have a few minutes to tell you about my nephrologist appt. Here I am...
My nephrologist appt went pretty good. I got there at 7am. I hated getting up at 5:15am this morning thats more than an hour before I regularly get up. They are in the same general location as where my college was and where my gyn is, that was convienient. This group is about 4 nephrologist in this little office, they also have a location north of Buffalo but I chose to come there. Had to do the standard paperwork for my new chart. The office was mostly himself, the medical assistant and the medical administrative assistant - the RN's were not in at 7am. I got into the examination room and sat for 5 minutes and he walks in. Dr Ryan seems to be rather pleasant but has a different personality. He was total business and didn't have a very good bedside manner like the rest of my docs are (my oncologist has a arrogant streak about him but I liked him). I did manage to crack him a smile while examining me. I sat there quietly while he went through my blood work that my primary sent over and marked in yellow highlighter different things to look out for. We went over the bloodwork, he said that much of my bloodwork looks relatively normal and that I am in the earliest stages of PKD. Ok...so he isn't overly concerned at this point. He said that my creatinine level is still at 1.33, at normal limits. Thats the number we really have to keep an eye out. He explained to me that my GFr is not 43% but 53%. thats 10% higher than what was originally told in april by my primary. Thats fabulous news. I had to put a gown on and sat on the exam table for a full head to toe examination. he examined my eyes, ears (I have wax in them (duh! I know that...I've had that issue since I was little), throat, heart, lungs, checked for pit edema (I put my feet up while on my recliner at home). He said everything at this time looks really good. i have a nice strong heart. We talked about cholesterol and HDL, its 230. Because my HDL is 76, outstanding - he isn't concerned about it but because I am going through the changes premenstrually (I already skipped the month of July and had a double June period), they will start to look into it as I head into menupause (mostly due to the tamoxifen - they warned me about it, so its starting now). Also, he mentioned that I am in danger of getting diviticulitis in the near future as the kidney function levels get much worse. He said just keep an eye out for seeded foods, popcorn. we didn't get into diet too much but talked about cutting back on the caffiene. He is putting me on BP meds but at a low dose - 10 mg, lisinapril (something like that). He took the blood pressure at sitting and standing and I had readings of 130/90 and 140/100. He said to start when my BP stays at 130/90 (which it has) so looks like I will start that soon. I will continue to have my nurses monitor my BP here (I told Mary that during the next Personal care orientation class and they need to have an arm for BP, I am an excellent candidate - I bet they all get me wrong..LOL!!) They took a urine culture and found traces of blood (he said according to my lab reports from the primary - I have been consistent on that which probably was the reason why I was referred to a urologist). I forgot to ask him about antidepressants but perhaps I might have to call my cancer hospital for it because I am thinking it might be due to the tamoxifen. I do have to do a 24 hr urine culture, which I will do on Saturday. Then another urine culture test about 10 days after i start the BP meds, then the last one will be 2 weeks before I return for my next appt. I don't have to go back until October 28, this time i am the very first patient of the day - a guy was before me. I guess he starts promptly at 7am. Thats going to be a busy week because thats the same week as my 6 month cancer mammo checkup with my surgeon at my cancer hospital, thats on Oct 27.
at least I won't have to worry about going through some tests and dr visits now. I FINALLY have a reprieve that I have waited for. Other than that, I am pain free and thats what I need to keep aiming for. I am not in any real danger. Which is really good news all together (looks like I will be rollerblading for years to come.LOL!!). I will be an old, old lady with PKD. I may even live to 80-85, which is a longterm goal of mine.
He asked me about family heredity and asked to have my parents tested (mom yes, dad...ahhh..thats gonna take a long time). Dad has the hardest head I know, as you all know from the previous journal situation between my friend Tom and my father and what he "suppose to have" said. Dr Ryan even mentioned about my grandparents on both sides to see if they had PKD. He understands that this disease is the "secret" disease (you PKD friends definitely understand me). Thats gonna be a toughy. I also talked about my aunt, who died of diabetic renal failure in October and the possibility if she was a carrier and no one knew (I don't even know where to start with that one!). I was diagnosed just after her funeral and all through her funeral, I had a lot of lingering questions about her health (knowing she had renal/kidney problems). If she was a carrier, then my cousin Patti and John would have to be tested. I am opening up a can of worms with this disease. this whole family medical history with PKD kinda scares me but if it will save the rest of my family some grief, then it must be done. i have so many questions that I ask myself in regards to this disease process. Why did god pick me to have this and no one else? what happens if my fathers side had it and my aunt who died of diabetic renal failure a carrier? where does that leave my cousins. What about my mothers side of the family - it is much larger (I am the oldest of 17 grandchildren). Do I have my grandmother who is in a home get tested - she's 89! I hope I can get some answers somewhere. I feel alone. sometimes I wished that Aunt Joni was still alive so I can talk to her about this.
My nephrologist appt went pretty good. I got there at 7am. I hated getting up at 5:15am this morning thats more than an hour before I regularly get up. They are in the same general location as where my college was and where my gyn is, that was convienient. This group is about 4 nephrologist in this little office, they also have a location north of Buffalo but I chose to come there. Had to do the standard paperwork for my new chart. The office was mostly himself, the medical assistant and the medical administrative assistant - the RN's were not in at 7am. I got into the examination room and sat for 5 minutes and he walks in. Dr Ryan seems to be rather pleasant but has a different personality. He was total business and didn't have a very good bedside manner like the rest of my docs are (my oncologist has a arrogant streak about him but I liked him). I did manage to crack him a smile while examining me. I sat there quietly while he went through my blood work that my primary sent over and marked in yellow highlighter different things to look out for. We went over the bloodwork, he said that much of my bloodwork looks relatively normal and that I am in the earliest stages of PKD. Ok...so he isn't overly concerned at this point. He said that my creatinine level is still at 1.33, at normal limits. Thats the number we really have to keep an eye out. He explained to me that my GFr is not 43% but 53%. thats 10% higher than what was originally told in april by my primary. Thats fabulous news. I had to put a gown on and sat on the exam table for a full head to toe examination. he examined my eyes, ears (I have wax in them (duh! I know that...I've had that issue since I was little), throat, heart, lungs, checked for pit edema (I put my feet up while on my recliner at home). He said everything at this time looks really good. i have a nice strong heart. We talked about cholesterol and HDL, its 230. Because my HDL is 76, outstanding - he isn't concerned about it but because I am going through the changes premenstrually (I already skipped the month of July and had a double June period), they will start to look into it as I head into menupause (mostly due to the tamoxifen - they warned me about it, so its starting now). Also, he mentioned that I am in danger of getting diviticulitis in the near future as the kidney function levels get much worse. He said just keep an eye out for seeded foods, popcorn. we didn't get into diet too much but talked about cutting back on the caffiene. He is putting me on BP meds but at a low dose - 10 mg, lisinapril (something like that). He took the blood pressure at sitting and standing and I had readings of 130/90 and 140/100. He said to start when my BP stays at 130/90 (which it has) so looks like I will start that soon. I will continue to have my nurses monitor my BP here (I told Mary that during the next Personal care orientation class and they need to have an arm for BP, I am an excellent candidate - I bet they all get me wrong..LOL!!) They took a urine culture and found traces of blood (he said according to my lab reports from the primary - I have been consistent on that which probably was the reason why I was referred to a urologist). I forgot to ask him about antidepressants but perhaps I might have to call my cancer hospital for it because I am thinking it might be due to the tamoxifen. I do have to do a 24 hr urine culture, which I will do on Saturday. Then another urine culture test about 10 days after i start the BP meds, then the last one will be 2 weeks before I return for my next appt. I don't have to go back until October 28, this time i am the very first patient of the day - a guy was before me. I guess he starts promptly at 7am. Thats going to be a busy week because thats the same week as my 6 month cancer mammo checkup with my surgeon at my cancer hospital, thats on Oct 27.
at least I won't have to worry about going through some tests and dr visits now. I FINALLY have a reprieve that I have waited for. Other than that, I am pain free and thats what I need to keep aiming for. I am not in any real danger. Which is really good news all together (looks like I will be rollerblading for years to come.LOL!!). I will be an old, old lady with PKD. I may even live to 80-85, which is a longterm goal of mine.
He asked me about family heredity and asked to have my parents tested (mom yes, dad...ahhh..thats gonna take a long time). Dad has the hardest head I know, as you all know from the previous journal situation between my friend Tom and my father and what he "suppose to have" said. Dr Ryan even mentioned about my grandparents on both sides to see if they had PKD. He understands that this disease is the "secret" disease (you PKD friends definitely understand me). Thats gonna be a toughy. I also talked about my aunt, who died of diabetic renal failure in October and the possibility if she was a carrier and no one knew (I don't even know where to start with that one!). I was diagnosed just after her funeral and all through her funeral, I had a lot of lingering questions about her health (knowing she had renal/kidney problems). If she was a carrier, then my cousin Patti and John would have to be tested. I am opening up a can of worms with this disease. this whole family medical history with PKD kinda scares me but if it will save the rest of my family some grief, then it must be done. i have so many questions that I ask myself in regards to this disease process. Why did god pick me to have this and no one else? what happens if my fathers side had it and my aunt who died of diabetic renal failure a carrier? where does that leave my cousins. What about my mothers side of the family - it is much larger (I am the oldest of 17 grandchildren). Do I have my grandmother who is in a home get tested - she's 89! I hope I can get some answers somewhere. I feel alone. sometimes I wished that Aunt Joni was still alive so I can talk to her about this.
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