Guest guest Posted May 4, 2004 Report Share Posted May 4, 2004 The Iron Infusion was a complete screw up yesterday. I arrived at 3 p.m. like it was set up for and sat in a room and waited and waited for the nurse to come and start. At about 4 she finally came and drew my labs. It wasn't until 5:30 that the trial dose of Iron Sucrose was run. I did fine with that. It was 25mg in a 50 ml bag run over an hour. I then had to wait for the real dose bag to come up from pharm. Keep in mind that this was supposedly all set up on Fri. It was nearly 7 when I the second bag came. It was much more concentrated and was 75 mg in a 100ml bag. My doc. had written for it be to infused over 15mins. The nurse said they never run it that fast and that she was leary sense I am so small so she set it for 20 mins. I did fine again but immediately when I was disconnected the transport wheelchair was there to pick me up and take me to the car. I wasn't even in the hospital room 5 mins from the time I was finished to the time I was leaving the in the wheelchair. I began having excruciating lower back pain like where my kidneys are located. Mom asked if she needed to take me right back in but I hoping that it was just from sitting in the recliner so long all afternoon and said to go on home and see if laying down would help. I always go to bed at 7 p.m. and this was nearly 8 so I was miserable. Once home I went directly to the bathroom where I discovered big white welps ALL over me! They were spreading and popping out one over top of another. The back pain was also increasing. Mom called the hospital back and they said that my doc. had just left the floor and that he wouldn't take a page because he wasn't on call. Very Upset! We called and left a message for the doc. on call to call us back and he never did. In the meantime the hospital called back and said to take me to the ER. Mom and dad and I went back to the hospital where we sat until 11:30. The doc. said it was an allergic reaction and gave me an IV steriod. They drew some labs that showed my white count is some elevated so something else to worry with. They took a chest x-ray because when the doc. listened to my lungs I had some wheezing. It was ruled out as being anything serious and just related to the allergic reaction. I just got about 2 hrs of sleep last night and my body is feeling o beat up. My back feels like when I had lithotripsy except this time on both sides. The doc's said it's because your kidneys filter your blood. My mom and I would like to move away to where there is some decent healthcare. Yesterday was just awful. Any ideas on good places to live with great healthcare? Thank you all for your prayers. I know they got me through yesterday. Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2004 Report Share Posted May 4, 2004 Sorry you had such a hard day yesterday. Maybe you should just move to Cleveland, lol. We live 20 min from CCF so it is great. We are very fortunate to have ALL of Gracies doctors working for the same hospital. And if all should fail there (hopefully not), another 10 min. down the road is Rainbow Babies and Children's Hospital (one of the best childrens hospitals in the country.) Is there another hospital in your area, you can try? I have noticed that the teaching hospitals are usually the best. Yes, you do have alot of residents, but they are usually eager to investigate new things. They are also much more educated on the newer disorders. Hope you feel better soon. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2004 Report Share Posted May 4, 2004 , We live in a monopoly here with our one and ONLY hospital. There are no choices. I know the teaching hospitals are much, much better. Searching... Thanks for your support, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2004 Report Share Posted May 4, 2004 , So sorry to hear of your experience. That is inexcusable that they did not keep you longer to monitor you further. I am surprised that they did not prremedicate you. Can you file a complaint with the patient relations department at the hospital? I hope that things will improve for you. Loriann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2004 Report Share Posted May 4, 2004 Loriann, Usually the hospital calls or sends out an evaluation survey. I plan to voice my concerns and complaints about this hospital visit. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2004 Report Share Posted May 4, 2004 Dawn, We aren't too close to any large city that know's what they are doing in terms of caring for a mito patient. The closest would prob. be L-ville, KY and I've been there twice with no success. I've also been to Vanderbilt which is 2 hrs south and didn't find any help there either. Cincinnatti is pretty far. It would be about 3 1/2 hr drive. I really need a local doc. that is capable of caring for general needs and emergencies as well working with Dr. Cohen. We are all about convinced to get out of dodge...but where would really be the BEST place?! We don't know! Thanks for your support, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2004 Report Share Posted May 4, 2004 , How close to a big city are you down there? Close to Cincinatti? I think it would be worth a couple hour drive to recieve better care. I know it is hard for emergencies, but I would consider switching- maybe Cohen knows someone? Dawn Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.