Bringing up to date part 2
So, I was released from hospital following thymoma surgery Tuesday 3/29/16. I was sent home with the following Tylenol 500 mg 2 tab every 6 hrs for pain, docusate 100 mg 2 cap two times a day (stool softener), ferrous sulfate 325 mg 1 tab two times a day, folic acid 1 mg 4 tab once per day, ibuprophin 400 mg 1 tab every 6 hrs, levothyroxine 75 mg to start 5 days after returning home (thyroid med), metoprolol 25mg 1 tab every 12 hrs. Pills pills pills. Recovery ok. Painful at times, which was to be expected. Very hard to get used to sleeping on my back. Would definitely recommend investing in pillow wedge for bed before having this done.
Went for follow up with surgeon 4/6/16. He said I looked good. Chest X-ray looked good. Took me off ferrous sulfate, folic acid, metoprolol and prescribed acetaminophen/codein 300-30mg for pain as needed. I ended up taking at night for pain but me and codeine didn't mix. During this time I didn't have a lot of problems with swallowing. Speech would slur as I got tired.
On 4/8/16 I met with the neurologist. She prescribed pyridostigmine 60 mg tab. She wanted me to start 1st day 1/4 tab 4 times a day, 2nd day 1/2 tab 4 times a day, 3rd day 3/4 tab 4 times a day, 4th and subsequent days 1 tab 4 times a day. This went well for first few days. I had lasagna 4/9 with few swallowing issues. Neurologist on vacation this week but was instructed to call in with problems.
I called neurologist office 4/12/16. Pyridostigmine helped for a bit but as I upped the dosage, diarreha increased (which I was not told was a major side effect of this med and to take with food). The nurse told me to take 1 tab 3 times a day
On 4/15/16 I had a follow up with my General Practioner. He said I looked good. Told him I was having issues with sleep and pyridostigmine. He prescribed alprazolam (Xanax) .5mg to help with sleep and suggested I take 1/2 tab 4 times a day of pyridostigmine. He also upped my levothyroxine to the pre-surgery dosage of .1mg as tsh indicated increase needed.
I contacted neurologist 4/18/16. Let her know pyridostigmine not really working (maybe dosage change all the time?!). So she had me stop the pyridostigmine and start prednisone 60mg.
4/19/16 was not good. Speech was slurred most of day. I had slept the night before, so not from lack of sleep. I was not eating, lucky to get 1000 calories a day. Not really able to swallow.
4/20/16 things did not get better. Called neurologist and they decided to admit me to hospital for 3 days to get IVIg treatment. Things seemed to get better. Still wasn't eating a lot but had relief from IVIg. Went home 4/22/16. Things seemed to go okay Saturday (4/23). I was eating jello and juice. Managed about 900 calories. Sunday (4/24) it took me two hours to get 3 prednisone tablets down. Decided to call dr. Said to come to ER. I was admitted for another 3 days of IVIg. By the time I got to floor to start IVIg it was 7 pm. Night nurse I had did not know how to administer the IVIg. It did not finish until 6 am the next morning. Not a lot of sleep that night. The next day, the neurologist forgot to put orders in for IVIg. It was 11:15 pm before they started IVIg that night and was morning again til it was done again. Another sleepless night. Also I have had very little to eat either. Getting very frustrated with whole situation. They started the last IVIg at 2 pm after the previous one had finished at 6 am. I spoke with hospitalist that I hadn't had anything to eat since Saturday. This was Tuesday (4/26). They decided to give me some nutrition another midline IV. I started to feel some better. Neurologist had me on prednisone through IV at hospital, taking 1/4 tab of pyridostigmine 4 times a day. They were also giving potassium through IV as well. I left hospital Wednesday 4/27/16. I was very scared to leave. I wasn't feeling quite right and afraid I would end up back again. My children and family were suffering and I was getting very depressed. As I was leaving hospital, neurologist said to up pyridostigmine to 1/2 tab four times a day. Also knew to take Imodium this time to avoid diarreah.
4/28/16 I took the 1/2 tab of pyridostigmine in the morning. The nausea was terrible. I vomited the liquid I was able to get down. Panicked I was loosing fluids/nutrition. Called neurologist. They prescribed zofran for nausea and cellcept. Said to stop pyridostigmine and start cellcept Friday night 4/29. Was finally able to sleep and was able to get a banana down. Later in the morning I got sick again. Neurologist called to see how I was doing. Explained I had vomited again. They said to start cellcept Saturday (4/30) night once I had not vomited for 24 hours. I explained I was very Leary of starting a new drug over the weekend since I would not be able to contact them. They assured me the dr on call would be alerted to my situation. So here we are at today. I haven't been on any mg meds since Thurs. I have been doing ok speech wise, able to whistle, swallow ok. I have had chicken noodle soup. Trying to get nutrition up since very weak from the last two weeks. i guess I will try cellcept tonight. Stay tuned and pray this works. Sorry for long winded to get to this point. Take care everyone.
Went for follow up with surgeon 4/6/16. He said I looked good. Chest X-ray looked good. Took me off ferrous sulfate, folic acid, metoprolol and prescribed acetaminophen/codein 300-30mg for pain as needed. I ended up taking at night for pain but me and codeine didn't mix. During this time I didn't have a lot of problems with swallowing. Speech would slur as I got tired.
On 4/8/16 I met with the neurologist. She prescribed pyridostigmine 60 mg tab. She wanted me to start 1st day 1/4 tab 4 times a day, 2nd day 1/2 tab 4 times a day, 3rd day 3/4 tab 4 times a day, 4th and subsequent days 1 tab 4 times a day. This went well for first few days. I had lasagna 4/9 with few swallowing issues. Neurologist on vacation this week but was instructed to call in with problems.
I called neurologist office 4/12/16. Pyridostigmine helped for a bit but as I upped the dosage, diarreha increased (which I was not told was a major side effect of this med and to take with food). The nurse told me to take 1 tab 3 times a day
On 4/15/16 I had a follow up with my General Practioner. He said I looked good. Told him I was having issues with sleep and pyridostigmine. He prescribed alprazolam (Xanax) .5mg to help with sleep and suggested I take 1/2 tab 4 times a day of pyridostigmine. He also upped my levothyroxine to the pre-surgery dosage of .1mg as tsh indicated increase needed.
I contacted neurologist 4/18/16. Let her know pyridostigmine not really working (maybe dosage change all the time?!). So she had me stop the pyridostigmine and start prednisone 60mg.
4/19/16 was not good. Speech was slurred most of day. I had slept the night before, so not from lack of sleep. I was not eating, lucky to get 1000 calories a day. Not really able to swallow.
4/20/16 things did not get better. Called neurologist and they decided to admit me to hospital for 3 days to get IVIg treatment. Things seemed to get better. Still wasn't eating a lot but had relief from IVIg. Went home 4/22/16. Things seemed to go okay Saturday (4/23). I was eating jello and juice. Managed about 900 calories. Sunday (4/24) it took me two hours to get 3 prednisone tablets down. Decided to call dr. Said to come to ER. I was admitted for another 3 days of IVIg. By the time I got to floor to start IVIg it was 7 pm. Night nurse I had did not know how to administer the IVIg. It did not finish until 6 am the next morning. Not a lot of sleep that night. The next day, the neurologist forgot to put orders in for IVIg. It was 11:15 pm before they started IVIg that night and was morning again til it was done again. Another sleepless night. Also I have had very little to eat either. Getting very frustrated with whole situation. They started the last IVIg at 2 pm after the previous one had finished at 6 am. I spoke with hospitalist that I hadn't had anything to eat since Saturday. This was Tuesday (4/26). They decided to give me some nutrition another midline IV. I started to feel some better. Neurologist had me on prednisone through IV at hospital, taking 1/4 tab of pyridostigmine 4 times a day. They were also giving potassium through IV as well. I left hospital Wednesday 4/27/16. I was very scared to leave. I wasn't feeling quite right and afraid I would end up back again. My children and family were suffering and I was getting very depressed. As I was leaving hospital, neurologist said to up pyridostigmine to 1/2 tab four times a day. Also knew to take Imodium this time to avoid diarreah.
4/28/16 I took the 1/2 tab of pyridostigmine in the morning. The nausea was terrible. I vomited the liquid I was able to get down. Panicked I was loosing fluids/nutrition. Called neurologist. They prescribed zofran for nausea and cellcept. Said to stop pyridostigmine and start cellcept Friday night 4/29. Was finally able to sleep and was able to get a banana down. Later in the morning I got sick again. Neurologist called to see how I was doing. Explained I had vomited again. They said to start cellcept Saturday (4/30) night once I had not vomited for 24 hours. I explained I was very Leary of starting a new drug over the weekend since I would not be able to contact them. They assured me the dr on call would be alerted to my situation. So here we are at today. I haven't been on any mg meds since Thurs. I have been doing ok speech wise, able to whistle, swallow ok. I have had chicken noodle soup. Trying to get nutrition up since very weak from the last two weeks. i guess I will try cellcept tonight. Stay tuned and pray this works. Sorry for long winded to get to this point. Take care everyone.
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