Whew! That was close! (long)

Hi everyone,

As you all may know, I've been recovering from an intensive experimental chemo regimen to treat myasthenia gravis. I was home a week and doing "ok" when things started going bad on Tuesday.

Early Wednesday morning I went to ER with a fever and general feelings of being unwell. When they did the labs, the numbers were critically bad. They were supposed to be low as the chemo was to kill my immune system but this was WAY bad. I began bleeding spontaneously from my nose, etc and they immediately admitted me to an isolation room.

I had a horrible day of fever, which got as high as 104. I had two episodes of uncontrollable shaking chills that were so violent I thought I might break a tooth. Dh said I was pretty delirious. I was started on precautionary IV antibiotics (STRONG ONES) and they began transfusions and platelet infusions over the next 3 days. My neighbor stayed with me the first night and dh the next two. I needed someone 24/7 with me.

Finally this morning, I was sent home, out of the "critical" stage but still incredibly low and at risk. My blood cultures grew nothing, so I did not have an infection, just my body's extreme reaction to my blood counts being so low. I'm back in my home isolation and hopes are that since I've taken all the growth factor my bone marrow will come back to life over the next week. All of my hair is now gone--what little was left we shaved off an hour ago. I still haven't looked, but dh says I have a pretty skull shape.

The silver lining--the myasthenia symptoms continue to slowly disappear! My mom babysat me the other day at the hospital during a meal and after I asked her "When was the last time you saw me eat without choking?" Her eyes filled with tears and she said, "Not for a VERY long time." The double vision disappeared yesterday and today I noted that my eyebrows seem to be less "droopy."

Anyway, I'm home and thankful to be here. My poor kitties have been real troopers staying here alone with dh rushing in to feed and clean and then leave again. They had their "hot beds" so they were at least physically comfy.

Just wanted to update you! It's good to be back and I look forward to reading and catching up on all I missed.

Thanks for reading.

Cally

Oh my, what a rough time you've had hun, you are one strong lady.Lets hope that this is the worst over and now you are on the road to recovery. My thoughts and prayers are with you.We have missed you on here.xxx

Wow!! Scary, yet exciting at the same time (since your myasthenia symptoms continue to slowly disappear). I mean, that's what this is all for, so it's working .

I'm actually surprised you can be around your furbabies, since you're in isolation, but I see that your DH is doing the litter box cleaning. Can you actually touch the kitties, or just see them from afar?

Whatever, I'm sorry you're suffering so, but it sounds like it may be worth it in the long run.

for a very healthy future.

I'm allowed to pet the furries, but then I immediately wash my hands. No "in the face" or licking (I have 2 dogs as well).

Cally

Originally Posted by CatMom2Wires

I'm allowed to pet the furries, but then I immediately wash my hands. No "in the face" or licking (I have 2 dogs as well).

Cally

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Being around your furbabies will aid your recovery, I know when I came out of hospital after my thyroid op I found I could relax more in my own environment and my kitties were the best tonic.x

It must be so hard but exciting at the same time being ill yet knowing your symptoms are disappearing

Many continued vibes hun

Wow, how Scary Carla, but at the same time how exciting to see all these good changes going on! And the hair, it will grow back strong and thick! :vi bes::vibes :

Oh goodness hun, how terrifying! I am sending you SO many vibes so that you can get through this quickly and will be able to get on with your life, AND that it will be incredibly productive and happy!

Well, that's scary!

I'm glad you are home again now, and starting to feel better. I'm sending tons of vibes your way that you will continue to keep feeling better. And Carolina's right- your hair will grow back better than before!

Be well, and stay strong. And rest, rest, rest, so you can get stronger!

Sounds like a good update all things considered.

Here's hoping everything keep getting better!

I've been thinking of you and am always glad for the updates. I'm so happy your symptoms are improving.

So sorry you have to go through so much. happy to hear the treatment seems to be working.

Oh my heart dropped through the floor when I read the first part of your post!

BUT... I am SO hopeful that despite this setback, this means it's WORKING, because you're still seeing signs of improvement otherwise!!!!!

I'm so glad you are on the mend. And I'm sorry to hear about all the misery you've gone through. Hope it is clear sailing from here on out.

Leslie

Oh my goodness! That was definitely a close call! So glad you're doing better and it seems as if things are working. I've been concerned about you because I haven't seen you posting. Now I know why.

Here's a little pick-me-up for you:



Feel better and continue to improve!

It's good to hear that there's a "silver lining" to that terrifying episode! Mega for no recurrence and further abating of your symptoms.

Thanks everyone!

It was so nice waking up in my own bed this morning, even with the headache I had and my new "sphinx look!" LOL I accidentally caught a glimpse of myself in the mirror and I didn't cry--it's kind of fascinating, actually.

My local doctor who got me through this crisis, is also our friend, and is bringing us Chinese food today. YUM. It's so nice to have an appetite again.

Stephanie, Tumbles is so handsome. I think my dh sometimes wishes WE had kept him! He is one great cat!

Have a great day everyone. I'm off to eat some breakfast.

Cally

Originally Posted by CatMom2Wires

I'm off to eat some breakfast. Cally

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Enjoy.

Continued !!!!!!

Wow! I've been thinking about you and wondering how you were doing.

Sounds like it's been rough but at least it seems to be working. That's a good thing.

I've been thinking about asking my doctor is something like this would work for me. After reading this, I don't think I'll bother.

Stay strong

Cheshire Cat,

I don't know what disease you are dealing with, but if you are severe, and not responding traditional treatments, it's nice to have this option. If you want to do some reading, you can search "hicy" or "rebooting immune system" or "revimmune" and find info.

I had truly gotten to the point where it was only a matter of time before I either died from choking or pneumonia as my swallow was so unsafe. Also the other symptoms so impacted my life, I rarely had what I would consider a "good day."

Not everyone has the complication I did. I tend to be extra sensitive to meds when they do work, and this was no exception. In any case, I wish you the best with dealing with your challenges.

Cally