What a road I have taken. Starting with last Thursday when I increased my DDAVP to three times a day, I started to feel not so hot. I went out of town and made it home in one peace, but not really feeling myself. Monday I started the day off feeling yucky and ended it with nausea and diarrhea. I had an appointment with the local endocrinologist to get a local doc on board with my care, but when I entered his office at 3:00 pm, I was told he had a family emergency and I could come back tomorrow morning. At 11:00 p.m. I decided I was not going to be sleeping and would drive myself to the emergency room. I had this feeling something was not right and needed the peace of mind that my sodium level was ok...
I enter local emergency room at 11:15 pm. I tell the doctor about my DI and what I feel needs to be done. They took my blood and amazingly in 1/2 came back and said that my sodium level was 118. He had a very concerned look on his face and told me it is a good thing I came in. He contacted the local endocrinologist to get direction even though I was not officially a patient of his. the ER doctor told me that there are two very delicate brain cells in my brain and that it is very critical that my sodium level be raised slowly in order to not injure these cells;therefore, I was to be admitted. I called my husband and told him to sleep, that I would not need a ride home until the morning.
Everything went downhill from there. This was the worst night of my life. Without the DDAVP I had to pee continuously all night long and so as they were hydrating me with the IV, I was having to get up and use the commode every 1/2 hour to hour. I was thirsty like I was in the desert without water and they would only let me have ice chips. To top it off I allowed him to administer some relaxing drugs into my IV and so I was drowsy, but still having to get up and pee. Somewhere in the middle of the night I was transferred to a swing bed in a room with four other patients. Somewhere in the morning hours I became unable to get out of bed and had to resort to a bedpan. I became very dizzy and could not sit up at all. The patient to my left snored as loud as ambulance siren. The patient to my right was not stable and needed all the attention of the RN. The one to the farthest right had a COPD cough that made me ill to hear. I became more and more ill.
At about 1:00 p.m. the nurse is able to gather my papers together to get me to go home. The endocrinologist never came to see me, but asked that I come see him in the morning. I was totally unsure as to how I would even make it home, as I could not sit up. Somehow I made it home and Jared walked me to bed. I slept and drank for the next 20 hours. I still could not get up. Jared would have to literally hold my arms and carry me to the potty. The whole world was spinning around me. In the flat position I was not dizzy at all.
I made it with a barf pan to the endocrinologists office the next morning. After walking a flight of stairs I felt so out of breath I thought I would collapse? What the hell is wrong with me? The doctor could offer no answers. He did have no problem making it perfectly clear that if I was his patient he would have tried both drugs on me before sending me of for surgery. How doc do you think this makes me feel better when I feel like I am dying? All he could offer was for me to get all my medical records from UCSF and that I would need to have my blood work checked tomorrow morning and I would hear from him in a week when it came back.
At home I made a call to my doctor Blevins. I get voice mail. Do you think he will call me today? Nope!
I survive another day in bed and Jared is clear on the fact that he will have to take another day off tomorrow. It looks like mom will not be able to anything anytime soon. Wednesday night I was able to walk to the potty by myself and even sit in the tub, but still very very weak and my world spinning around me. Oh my God! What is wrong with me? How do I leave the hospital in worse shape then I entered and how come no one can tell me what is wrong?
Thursday morning. Jared takes Alyson to the grocery store and I lay in bed sobbing. I actually am crying out to Jesus. I am crying prayers of healing and guidance. Father, you have been with me every step of the way and you have not left me, I know you are here, but please hear me. I am scared. I need you to hold me and guide me and cry with me. I decide I need to hear something positive as reading is not an option at this point. I turn on Focus on the Family. Then my phone rings with caller ID "UCSF"
Yes.. It is Dr. Blevins, who hears my whole story. He suggest that the reason my sodium was low is because I had too much DDAVP. He is very concerned at how quickly my sodium was raised. He said that for it to go from 118 to 140 the next day at noon was way too quick. He explained issues with dizziness and gait that could result from brain injury if your sodium is raised too quickly. We are also still wondering how my adrenals are doing and if they are not doing well, this could have been the problem as well. He was very concerned and asked if I could come up ASAP and be admitted for testing and observation. He said that this is being cautious and we may find nothing, but better to be safe than sorry.Just as the phone call ended my sister showed up to hold me as I cried and then get into her very organized sister mode and type up my letters of care for the kids, pack their bags and mine. My mom also showed up and was able to comfort me and help Jared and I get out of the house in a fair amount of time.
It is amazing the timing of these things. One day earlier and I would not have been able to handle a 4 hour car ride. God was with us on the road and we had not traffic at all. We arrived at UCSF at 4:30 p.m..
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