Re: Because this is a well visited forum, I need some help. Update #29
I honestly have considered "kidnapping" all 3 of my docs (PCP, Uro, OB) and getting them in a room together to see about how they ALL need to work together to get me some continuity of care. I am getting tired of "passing the message" between all of them and I hate having to do all the work. I know it is my medical problem but I need some doctor to take care of it all. Is there a Uro OB?
It has been extremely frustrating to have to deal with all of this stone stuff and think that I may end up like I did during DD's pregnancy. My thought was when I found out I had stones was to be on the offense instead of the defense like it was with DD. But then I find out I had HUGE stones. But until then I had no idea I even had them (no pain at all). Then 14 weeks hit. And it has been trying to keep one step ahead of these stones. And I have listened to my doctors about what I need to do. I sleep more, drink more water, eat healthy, try to keep my stress at a low level. I am even seeing my therapist because I do not want these stones to put me into a deep depression like I was with DD. And every time I thought I was past the "hard part", I would get thrown under the bus by these stones. The past 2 ER visits were the ones I had no choice but to go in for. Those were 0-10 pain in less than 45 mins. And to be treated like I was because I don't want to put my body through my chest being on fire and because I listened to my Uro & OB, it is beyond mentally strenuous.
I just want to be pain free. I want to be able to go shopping at the Commissary 35 miles away without having to check out where the hospital is "just in case". I want to get the things done for my house (cleaning, laundry, dinner) without having to worry about getting a nap. I want to make it through a weekend without wishing I don't even up in the ER. I want to be able to get the things for the baby that I need to get. But I can't do any of this. Most days are good. But some days aren't. In 6 weeks I have had 5 ER visits. For each ER visit, I need at least 2 days of rest, sometimes 3. But I had to get back into being a mom or fight for my rights immediately afterwards.
My biggest fear is that the pain will start again. Not a "stone attack" pain but the constant pain that started during DD's pregnancy at 26 weeks. That was when my OB put me on the patch. My pain was constant, 5-7, every minute of every day. I was told over and over again that I should not be in pain. But I was and no one would believe me (except my OB) and no one wanted to find out why. And the moment DD was born, the pain went away completely. The pain never stopped, even with the patch, though the patch did lessen/deaden it. I could not even be on my right side, I could not touch my right side. The pain exhausted me to the point I was sleeping whenever I could. I even lost friends because I was so depressing. Anything but the basics was neglected. And the side effects of the patch were horrible. I was on 100mg of Benadryl every 4 hours (did not help me sleep either) and I still itched horribly. Phenerghen every 6 hours. Every night that I put on the patch (changed it in the AM every 3rd day) I would not sleep. I stayed up the whole night playing crosswords and word finds. The sheer exhaustion made it possible for me to watch a LOT of TV, sleep when I could, and my whole life just shut down for 12 weeks. Then DD was born.
And the fear of that pain is looming over my head every day. I get a bit scared when my pain is constant at a moderate level. I actually get happy when the pain level moves up or down. That means that the pain will eventually go away.
Other than asking for a new Uro, I don't know what to do. What is a person supposed to do when they are in my shoes? OB doesn't want to treat the stones, Uro doesn't want to see me while I am preg, PCP has never had a case like me, and ER thinks I am a drug seeker. My only thought it see a Perinatologist. But I don't know if they know how to deal with chronic kidney pain in pregnancy.
It is funny, I keep hearing from other people about women who have had kidney stones while they are pregnant. And these women do not have the problems I am having. I think someone needs to start researching this more and needs to be taught how to deal with woman who is pregnant and has kidney stones. No one seems to know how to deal with these women.
ME: Dagny 36. Married 7/16/04 to: DH: 38. US Navy Corpsman. DS: Quinn 16. Future Mad Scientist DD: Kayla 10. Future Pink Mermaid Ballerina Princess
DS2: Colin 3 years. Destructive Houdini!
Feed your children human milk as long as possible, it might save their life. It did my son's.