Semi Back from the Dead Again!

If you don't know what has happened, you will need to go back to the previous post, but here is what has happened since then.





2/24

Received a call from my doctor and my sodium was 125 that was three up from 122. Sent an e-mail to Dr.Blevins at UCSF.

Just before I entered my appt. I checked my e-mail (thanks to Jared's iPhone) and Dr. Blevins stated.. you should be admitted and have it raised slowly. We met with my doctor for one hour. The beginning of the appt. she wanted to know how I felt that lead me to have my sodium checked. She then talked for 1/2 hour about how she does not believe I have DI anymore. She states that their is no one she knows that could manage DI on the low oral dose I am on. She wants to figure out what else is going on. We talked about me prior to the surgery and I think anyone who knows me well or has spend a significant amount of time with me knows that I did pee more than the average person. I also know that 3 weeks out of the month I have significant pain when I urinate ( from ovulation through menstruation). She then talked about why my sodium would drop. She has seen my charts and agrees I am more than careful. She believes it is not overdose on water and that if it is overdose on medication, it is because I no longer have DI. She does not deny I had it in the beginning, but thinks it has gone away since then. Here is what is going on in my brain while she is so patiently talking....OK doc, I got you, all good points, but do you not understand that right now we need to talk about how we are going to raise my sodium slowly. We can talk about this later. I was patient and then Jared finally asked her what her plan was to raise my sodium. She said, "take no more pills, go home tonight and let the water out and then have our sodium checked STAT in the morning". So in my brain I am thinking how well is she going to respond to the fact that I have already asked Dr. Blevins and his opinion was quite different? Due to the fact that he referred me to her for the reason that they have a good working relationship, I decided I would throw it out there. So I said, "Not to undermine you, but Dr. Blevins feels I need to be admitted to the hospital to have my sodium raised slowly". She took it better than most physicians would take it, but it of course did not go as well as I had hoped". She said I was more than happy to go to the hospital, but she does not know what they will do for me. She does not follow patients at the hospital and said I would have to go through the emergency room. So we sat there and stared at her. I told her of my horrible experience last time and that I would like to do anything in the world to prevent that from happening again. I explained what it did to my brain and how I could not get up for three days and how scary it was last time. So she said, if I need to in the middle of the night I can go get my sodium checked. We decided to hang out in Fresno and have my labs checked at St. Agnes at around 8:00 and then decide if I would like to be admitted. She wrote on the orders "release to patient" thank God! Jared was all for no hospitalization, I was confused as hell.

When we left her office I felt better than I had felt in two days. We went to Costco to pick up a few things we needed and then I ran into my aunt. She insisted we come over for dinner and so we did. I found myself starving with an appetite and I ate a lot. We then went to St. Agnes about 8:30 and had my lab drawn. At 9:30 they delivered me my envelope and ta da.. all was normal.... NOT GOOD NEWS and I new it. I called my Fresno doctor and said, we never talked about what to do if my sodium was normal. She said, just go home and take your medication if you peed a lot. I told her I already had started to. We drove into our house I stepped out of the truck and suddenly new I was in trouble. My gait was unsteady and my head was starting to spin. My mom looked at me with horror and I new I was in trouble. Jared called my Fresno doctor again and she said, if I feel bad I should go to the hospital. I did not like her answer and so we called Dr. Blevins, he said it was ok to take my medication now and he told Jared to watch me. I followed Dr. Blevins because I new that if i went to the hospital they could do no more for me there than here and I was much more comfortable peeing and feeling miserable here than there.

I peed all night long despite my medication and did not sleep at all. At 5:30 a.m. I went back to my bed to attempt sleep as I took my next pill and slept until 7:15. When I tried to lift my head off my pillow I new it was back and I was now in more trouble. I called for Jared and he helped me get my head in a stable place. It was clear I would be going nowhere for the next three days.

2/25

Jared e-mailed Dr. Blevins. He calls this water brain adaptation. I lost a lot of water and my brain is adjusting to this. I would try to describe the feeling to you, but it is one that is indescribable. Laying flat in bed without moving, you feel fine. Yesterday i could not lift my head to have Jared try and prop my wedge up. It is scary, but less scary this time because I have been through it before and now that it will go away and it will get better. Dr. Blevins wrote that I had to have my sodium checked today. The only way that would happen would be in an ambulance or in my bed. My wonderful local doctor arranged for a nurse to come out. This was way out of the scope of her program, but greatly appreciated.

My lab results came back and my sodium dropped, but still within normal range. Dr. Blevins called and we talked about the number and also the other doctor. He said, we need to figure out why it is dropping. He also said that we could be going back to where we came from. He said I need to have it checked again tomorrow and call him with the results. talked about the differences of opinion between him and my other doctor and we talked about my output last night. He said, "it still sounds like DI" When talking about my sodium coming up fast and method of treatment he said, "that's why I am the pituitary doc". At the end of the day my Fresno doctor called and we had a very good talk. She stated that she and Dr. Blevins have been e-mailing each other and that she too is concerned that my sodium went from 141 to 135. She still holds on to her method of treatment and states that she and Dr. Blevins disagree. I asked her that if I was in the hospital and given sodium slowly, how would that have slowed down what my body did naturally?" She said it would have changed nothing. So this is where she and Dr. Blevins mainly disagree and I was left hanging because I needed a doctor who new how to do this slowly. It obviously did not work out last time and not this time either. She did say that she feels Dr. Blevins needs to take my case to grand rounds and have all the brillant minds figure out what is going on. She also stated she hates to see somone who had a small prolactinoma have such a life changing event when the surgery may not have been necessary to begin with and she will continue to fight with me to figure out what is going on. Of course I like her. It felt good to have a doctor show so much compassion. So on to figuring out how it happened.

Long story short. I process all that has been said to me as well as what I know about my body. I spent the day purposely not drinking much at all. I went to bed at 8:00 knowing that my last dose was taken at 12:30 p.m. and that most likely I would need another dose somewhere in the middle of the night. Jared went to bed at 11:30 and helped me use my female urinal. At that point I wondered if I should take medication or just wait and see, and so I waited and not until 7:00 the next morning did I have to pee again.

2/26

This morning I have peed a bit more but better than the night. So I am thinking the answer to our question of why, is medication. My DI is getting better and I am taking too much. Here is my best guess as of this morning. Last week I started to feel yucky. I am guessing my sodium started to fall, by Saturday my body needed to get rid of water and instead of letting it I took more medicine, so my sodium dropped more and I felt worse until Monday it said, "WARNING SOMETHING IS WRONG". It is hard when you have not felt good for so many years to determine what is what.

Today I can sit up a little bit more, but not too much and am still requiring the care of my husband. He has been great and the kids are doing well too. It has all been then hardest on my Aly, but she is surviving. Her grandma picked her up today to spend the day and night with her and she was thrilled. Andrew almost missed the bus two days in a row and got a lecture by the bus driver about being in line when the bus comes. I just laugh. Thankfully since I don't have to get up, I can lay here and feel well. Dinner was brought last night by a friend and will be tomorrow by my friend. Praises to our community of friends. And yes I can't believe that someone still comes back to check this blog I so often leave unattended, as I received a call late Tuesday night from Kristi to see how I was. Thanks Kristi. I will talk about all the amazing God things later, but for now I am alive, just not as alive as I wish I were. Since I have been through this before I know what to expect and it is much less scary. Will keep you posted. Thanks for your prayers.