June 3, 2010 Urology appt
Both my parents came with me to my urology appt. Dad actually stayed downstairs in the lobby while Mom and I went in. Gave the reception my paperwork they asked me to fill out. Then I had to pee in a cup (What is with these dr's that want me to pee in a cup). Mom joked when I got to my seat afterwords and said "Jen, you are in a urologist office" LOL!! That is the worst you probably have to do. Yeah right. We waited about 15 minutes then we were called in. Then waited some more, the PA took my blood pressure and it was 128/92. Jeez...what a surpise. NOT! Still elevated. The urologist came in. I asked him some of my questions but he couldn't even answer them because he wants me to see a nephrologist. ok, not a surprise there. He kept saying a few times that "I will be on dialysis when I am much older age". He was 100% certain. God! talk about being upfront. I think he was surprised that I was armed with the questions and was able to converse with him alittle bit about the PKD (thanks to Norma67, IhavePKD and Eltasche for giving me the helpful info). After talking a few minutes, he finally brought up the urine sample and said that I had a very small trace of blood in my urine. Usually urine is a light pink in color but you couldn't see anything in the cup. Now they want me to do a cystoscope and look into my bladder to see it. I have to go back on 6/17 and get this done. I cannot believe what this summer is turning out to be. Full of Dr appts and tests. I asked him about the CT scan and contrast dye. He had the nerve to state that my risk of having problems with the dye is zero and that my creatinine level isn't in any danger to get this done. He wants me to get this done and to make sure he gets the results too. I am still kinda apprehensive about this. I will be making the nephrology appt on monday (they gave me a name but I have 2 others that are equaly as good). I want to see the nephrologist before I get the CT scan done. Just to be on the safe side.
I am just depressed about this whole ordeal and I feel completely sorry for myself. There is nothing I can do about it.
And one of my very good friends who works in outpatient physical therapy at Buffalo General hospital is losing her job. it just isn't right. My hospital system is getting rid of all the outpatient clinics - that includes dental, eye and medical clincs. where does this end? Jen
I am just depressed about this whole ordeal and I feel completely sorry for myself. There is nothing I can do about it.
And one of my very good friends who works in outpatient physical therapy at Buffalo General hospital is losing her job. it just isn't right. My hospital system is getting rid of all the outpatient clinics - that includes dental, eye and medical clincs. where does this end? Jen
Replies
Well Jen, Don\'t do it, there\'s no reason for you to have a cystocope, does he think that the blood is coming from your bladder. I have had several occurances in my life with blood in my urine, not a lot, but probably 3 and nothing ever happened from it. Wait until you see your kidney doc and see what he has to say. Oh Boy, I just love to hear that doc\'s are surprised at the info we have when we go into their office. About time, wouldn\'t you say!
Stay firm, confident and continue doing what you are doing Jen. Then wait and see what your kidney doc has to say. Remember this guy is a urologist, not a kidney doctor and he doesn\'t know best! Most of all, do not have the CT scan done with contrast dye!
ok, I\'ll stop ranting about all of this now. Keep your chin up, better things are to come. Remember the drugs that are being tested now and will be, most likely, put on the market once the FDA approves them for PKD. You have a future honey, remember that! and it\'s not dialysis!
lots of love,
Norma...
So sorry you had such a rough day. I don\'t know what PKD is, but it doesn\'t sound fun. I\'ve had blood in my urine 3 times before and it was for 3 kidney stones at separate times. Try to keep your head held high, it will be ok. Talk to your kidney doctor and see what he/she says about it. They are the experts. You\'ll be in my prayers and thoughts. Hugs
Doctors are NEVER fun unless they are bring you potato salad. Why do you think they call it \"doctoring\" your finances? It\'s about what they CAN & WILL charge. If you are concerned, see another Dr. That\'s what Yellow Pages are for......ask around.
Hi Jen , please stay positive . I hope you get all the help you need soon , so you can have some fun in the summer .
I don\'t think you will have doctors apt all summer . Head up , you look to me like you are very strong , you can do it Jen !!!
It is a smart idea to see the nephrologist before you get the CT scan done.
Love,
maxine
you know...i was up all night last night, didn\'t sleep a wink after all this anxiety with the urologist. I wound up calling in sick today out of pure exaustion (slept until 10:30am). Did I mention to you guys that he had the nerve to say that I will be on dialysis when i am old. How does he know that? Everyone is different. Norma, not to worry - I won\'t get the CT scan done anytime soon. I will wait until I make the appt with the nephrologist and see what he/she has to say. I will be making the correct form of treatment for myself. I am really upset that I had to get my sister and brother to get a ultrasound. I do have to rule them out, part of the process. I really want them healthy incase they need to take care of me when and if I need it.