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.
Replies
Here is the bottom line: we need to make each and every day a good day, choose something during the day that we want to do and go for it, make time for Vacation and find a way to play. Regardless of diseases, painful doctor\'s appointments, depression and distress, here we are, writing, exchanging, working and sharing love. Please make some time for yourself, go to wherever your heart takes you. Embrace YOUR time. I am ready to do the same.
Being human beings, we can\'t help but ask WHY when things don\'t seem fair in our lives. That\'s OK, I think, as long as we keep on moving and get past the disappointment of being disappointed.
You\'re more powerful than you think, and you\'re not alone! Make it through this day, find a reason to smile, and then, when tomorrow comes, we\'ll do it all over...just better. Right?
Jen , I think we are both getting old :)
Love,
Maxine
Hey, I know how you feel about the family history thing. When I was diagnosed my nephrologist gave me a referal to give to my dad so he could go get tested (we had the same health insurance). He had every reason to be tested and no reason not to. But he never did. I think he\'s kind of scared to. My mom got tested and she didn\'t have it. The next thing I thought of was my 11 y/o brother. I asked the nephrologist if he should be tested. She said there wasn\'t much point if he wasn\'t having any problems. My parents wanted to, but I explained why they shouldn\'t. I think there isn\'t much point in having your family tested other than your parents or anyone who could be a potential donor if/when that arises. I joke with my brother now, telling him he can\'t drink colas bc he\'s ruining my potential kidneys, lol. Bc of course a sibling would be the first choice assuming he didn\'t have PKD.
In celebration of your low cholesterol, I am celebrating with a double whopper with cheese, large fries and one of those double things from KFC!
To answer your underlined question, first of all God didn\'t choose you and as you now know from your friends at DS, you are not the only one. What God does want you to know is that you aren\'t going through this alone, He is right beside you every step of the way.
Jenn,
Hun you are not alone. I know it feels that way but there are people in your life who love you very much. I have cousins with PKD, mother , Aunt, grandfather, great grandfather all died from it so I can\'t talk to them. I feel alone many times through out each year too at different times.
I knew I had PKD from my youth due to all my kidney infections, renal pain and enlarged kidneys etc.. My mother was still alive and she was a big help we talked a lot her and I because we both had similar pains and large liver cyst but when the first medical sonographer was doing my first ultrasound on me he kept saying to himself,(under his breath) but loud enough for me to hear ...oh my!, oh my! look at all those cyst!!! He then would gasp and look at me then back at his screen. He kept the screen turned away from me so I could not see it. I told him I already know I have the cyst & enlarged kidneys. I just dont know how bad it really is. When he finished he said to me, \" you are filled with cyst, way too many to count and they are on many of your organs.\" He should not have been the one to tell me anything about my results but I am sure it was his first exposure to the disease and he did not know how to react of what to think. The scary part for me was not having a doctor. I had pleaded with my MD to order the ultrasound and recommend me to a urologist(now retired) So my MD di this for me then he said he would never see me again.(long story) I had to wait almost 60 days to see a urologist and that was the longest 60 days of my life. The diagnostic medical sonographer really got me scared because of all his gasping and everything. I was nervous & scared. Not from having PKD but from not having a doctor. Not knowing how bad off I was. Not knowing what my renal function was, etc...
The only reason for this story is to let you know I was scared and felt alone then, I had to borrow Librium from my mother to get me through until I finally got a doctor of my own who prescribed me my own. I don\'t encourage borrowing meds from others but we all do what we have to do to get through tough times.
Jenn, The Lisinopril is a good bp med and also believed to help slow the growth of the cyst.
Your BP isnt real bad so thats good. And I know you must be so glad to get the news of your renal function being 53% That is awesome news.
With the good news after a wait like you went through can be emotionally draining and you may be wise to continue your request for a low dose of Librium or similar to calm your nerves. I have taken several different types but Librium always worked the best for me. I call them liberties because they give me freedom from anxiety and depression. Zantac is also good but more easily addictive.
As for researching your living family and getting them tested. You just have to keep on trying Im sure you will get some who will and some who wont.
I am so happy for you such great news.
Let me know what I can do to help. I will do anything in my power to help comfort you.
Best wishes
xxoo
Eltasche
To someone who knows very little about this disease, this seemed like a pretty decent visit? Nothing too alarming? Don\'t allow yourself to get too worked up over the rest of your family and the possibility that they may have or be carriers of PKD. None of it is your fault. There is no blame to this and you are doing your part.
I think you are handling this very well. I think your whole family should get tested. That would be the safe thing to do. I wish you luck in all of your health issues and that everything turns out okay. Hang in there. You are doing great. Hugs
Jenn,
I read your journals and you are a real inspiration, you are going through so much and yet you seem to be staying very positive. It seems like all the tests an dr.\'s appt\'s are going pretty well and i am happy for you that they are. I can understand why you would be concerned about your family, cousins, family history, i would be too. I am so glad that you will still be rollerblading for a long time lol, that\'s great. I hope that things continue to stay positive for you and that they improve as well. I also hope that all of your family is well and that their testing goes well. I am with you, and i will be praying for you. Lastly, i would like to sincerely thank you for reading my journal and responding it is so nice to know that people are willing to take their time and send you responses, makes you feel important, cared about, i thank you very much. I can tell you, i am not going through anything compared to you and i almost feel guilty for being so overwhelmed by it when obviously things could be much worse for me. I will keep you in my thoughts and prayers, thank you, take care.
While i have never gone through anything similar to what you are, I have had that thought about \"why did God pick me?\" with certain circumstances growing up. The answer to that question is .... we will only know when we are able to ask Him face to face..
Until then, keep trusting Him.
Hi Jenn,
Glad to hear things went well and numbers are looking good. The family history thing, my grandmother had PKD, my Mom & Aunt had transplants, Mom\'s lasted 15 yrs, my Aunt just had her 9 yr anniv of her transplant. Both of my sisters have PKD, the one had to have her 1 kidney removed as the kidney was too large & putting too much pressure on other organs causing problems. My other sister has an enlarged kidney causing similar probs & her Neph wants to take out 1kidney on her as well. As for me, I consider myself the lucky one out of us all; well, except my brother who does not have the disease, he keeps telling us highest bidder can get a kidney, he\'s such a jokster. In addition, out of my 3 cousins, 1 has PKD, the other not & the 3rd refuses to get tested. My daughter, just about 22, was checked at birth, no signs, but we know that\'s kind of early to detect. My Neph tells me to not have her tested until there\'s something out there to reduce the size of they cysts. His logic, why get labeled with a disease & give oneself the possibility of having problems of obtaining health insurance; which, kind of makes sense. Anyway, again, I\'m glad your appointment went so well & you had many questions answered. Keep your positive attitude, it\'s the best medicine! =D
Sue
Thank you everyone for such an overwhelming response. You guys are all my inspiration and love your support during my time.
I think this is all good news. or as they say.. nothing is all good nor all bad.
You sound like you have a wonderful medical support system... even if they all don\'t have an excellent bedside manner. Here is what we do in our family,
whenever anyone in our family is diagnosed with any type of disease or abnormality,they blast the rest of the family with an email. It is up to each member to decide if they want to get tested, examined, etc. Some people don\'t want to know. some want to be reactive while others want to be reactive. Everyone\'s different. it helps though for medical history. Congrats on how your are handling this!!! Continued good health and happiness.
You are definitely an inspiration. You have been through so much and take it all so well. Staying informed is important as is staying proactive. You are doing all of those things. I don\'t pretend to understand PKD, as you are the only person I have \"met\" that has it, but I\'m hoping to learn. Like I said, you are an inspiration. So happy to also hear that your oncologist says that everything seems to be clear! Hallelujah! You are blessed in many ways. Especially with so many friends in your corner praying for you. Please keep us informed on how you\'re doing. You are not alone! Pattye
Everyone\'s said it already, but I\'ll say it again: YOU ARE NOT ALONE! There\'s a reason we have PKD even if we don\'t know it. I like to think that way anyway. Maybe our cysts are really just alien babies who will save the planet :D