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My Three Week Nightmare

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#1 janey


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Posted 07 February 2007 - 04:53 PM

Hey my dear friends,
Well, I'm back for short spurts for a while, but even with that it's good to be here. About 4 weeks ago I started having bouts of coughing and fever. For 4 days I tried the ER and a primary care physician only to be ignored and told to go home and sleep it off.

Well on Jan 19 I found myself comatose on the bed, high fever and having difficulty breathing. The hubby called 911. At the ER my bp was 74/42. They spent 6 hours stabalizing me and getting my bp back up. About 2 am they moved me to a room. A while later I woke up unable to breathe. Long story short - I was intebated and transfered to the ICU of another hospital where I was put on a respirator for 2 days, during which time I was given 3 different IV antibiotics and high doses of steroids. Needless to say, I was sedated so was totally oblivious to all this. Sunday afternoon they pulled me off the respirator and continued with the IV's. They had installed an IV port in my neck, but on Wed replaced it with a pic line in my right arm. The IV line was 14 inches and ran from my upper arm to the chest.

My diagnosis was septic shock. Apparently I had developed pneumonia as well as a UTI and the infections had broken out into the blood stream. Being on cytoxin, didn't help the condition any easier to treat and in fact, made it even more serious.

After 5 days I was moved from ICU to a regular room and continued to recevied 6 IV antibiotics throughout the day and night taking anywhere from 30 minutes to 1.5 hrs per IV. I was making remarkable improvements. Then I picked up a hospital born skin bacteria as well as staff infecton on Friday night and ended up back in ICU on Sat morning with yet another antibiotic added to what I was already getting, a couple units of bloods and more steriods. Two more days in ICU, then back down stairs. At first they put me in a shared room, but that lasted 2 hours. The hubby worked assertively, but friendly on the charge nurse, explained the high risk of infection and got me a private room. On Wed I was finally taken off all antibotics, but not the steriods.

I was showing fluids around and in the lungs as well as strain on the heart. With all the fluids they had pumped into me, I was 30 lbs heavier than when I went it, which of course was causing LOTS of strain. By Thursday I was feeling better, bored to death and ready to go home. Friday night I was discharged by promising 24/7 care at home. They wanted to move me to a rehab hospital, but I had had ENOUGH of hospitals. My two week stay proved that you don't get well in hospitals.

My body took a real beating needless to say. I'm using a walker and need help getting off certain lower lying chairs, seats, etc. My endurance is low but improvng everyday. I get PT 3 times a week, but am already able to do many to the basic necessities without assistance. I'm surrounded by loving family and friends, so my rehad will be short and sweet. By the end of next week, life will be back to normal. I am off the cytoxin and my rheumatologist is going to have to give me a very, very good reason to go back on it. However, for the next month or two, both doctors have determined to minimize my meds. get me off the steriods and see what this has done to my body. I'm all for that!

With all the thoughts from family and friends and the wonderful care of three very good doctors, I pulled through this once in a lifetime experience. Every day is the first day of the rest of my life - and it's only going to get better.

Just wanted to let you all know what I've been up to for the past few weeks and that I missed you all!

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
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International Scleroderma Network (ISN)

#2 emmie


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Posted 07 February 2007 - 05:09 PM

Oh Janey,

You have been soooo missed! And I am so happy to see you posting this. I have been terribly worried. What an ordeal to say the very least. Three hundred cheers for your husband for insisting on a private room and Three million cheers for YOU and your fighting spirit and positive attitude.

Please, please follow doctor's orders (those that make sense!) and take very good care of yourself. A nice, slow, steady recovery with a good stablization would be just wonderful.

It has to feel soooo good to be home. You are a gem; let others polish you while you get your strength back!

xoxo emmie

#3 Guest_Sherrill_*

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Posted 07 February 2007 - 05:32 PM

Hi Janey,

All I can say is WOW!!! It is so good to see you posting again after your ordeal, and what an ordeal! You're one tough lady to survive all that! You have a real fighting spirit I think. I was most concerned about you!

It's certainly a worry to think you go into hospital and get sicker! I have read several stories to this effect, and the big problem is that staff have become careless with hygiene, mainly because of the high reliance on antibiotics. In the old days before antibiotics hygiene was the only way of controlling all the bugs. Also now, bugs are becoming resistant to many antibiotics, and you need more and more of them to kill whatever is eating you! :unsure: You certainly found that out! Staff are being taught all over again how to wash their hands etc!

My dentist had an experience with a hospital golden staph infection, and had a PICC line in for 3 months!

I nearly once had a PICC IV line like you had myself, but they wanted to preserve my arm veins in case I needed to change to hemodialysis. So they gave me a central line catheter in my chest, which also stopped just above the heart. That stayed in for 7 weeks with IV antibiotics every 12 hours which hubby was taught to give me. It worked anyway!

Are you having outside caregivers, or is the family stepping up to help?

I'll bet your poor hubby was beside himself? But it was great that he could get you a single room! He sounds like my hubby........ a real rock when you need him!

Your kitties must have welcomed you home too with open paws! :D There's no place like home is there?

I'll be very interested to hear what the doctors are going to do about your meds now. Definitely no more Cytoxan!!

Please don't go overdoing it here, though it's great to have you back! You come first, and take it easy when you need to.

Very warm hugs,

#4 Sherion


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Posted 07 February 2007 - 05:35 PM

Janey, What a horrible ordeal you went through!!!!!!! I am so glad you are doing so much better. It really does help the recovery when you have a family that is so supportive and helpful. Continue to get better and best wishes to you.


#5 barefut


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Posted 07 February 2007 - 05:48 PM

What a scary ordeal! So sorry you had to go through all that. I'll bet you gave your family a good scare.

So glad you are doing better and glad to have you back.

Take Care,
Love, Barefut

#6 Shelley Ensz

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Posted 07 February 2007 - 06:28 PM

Janey, as you know, I am thrilled to pieces that you are back home and starting on the road to recovery. I really can't imagine all you've been through.

I must say, you were adamantly optimistic through the whole ordeal, and I think your attitude had a lot to do with the fact that you pulled through, despite everything.

It's great to have you back...even with very wobbly legs and in-home rehab!
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#7 janet905


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Posted 07 February 2007 - 06:56 PM

hi janey,
so glad you survived that terrible ordeal. my first thought after reading your post is why did any doctor ignore a person on chemo with a fever. this is malpractice not a mistake. any oncologist would have a person that is taking chemo drugs and developed a fever on iv broad-spectrum antibiotics immediately. did they know you were on chemo? they could have killed you! these two individuals need to be reviewed. glad you are feeling much better. please take it easy. we're pulling for you!!

#8 Sweet


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Posted 07 February 2007 - 07:26 PM

Hi Janey,

I'm so very sorry to hear about this terrible life and death, touch and go period of your life! I am so glad you are pulling through this! I have to agree with Shelley in that your positive attitude has played a very major role in this. You are once again such an inspiration!

Please do me a favor however, and don't over do it. OK? We love you, care about you and don't want you to worry overly about what's going on around here. We'll be here when you are feeling better.

Much love,
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#9 whirlway


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Posted 07 February 2007 - 08:04 PM

Janey, so glad to hear you pulled through all that mess. I started crying while reading your post, it brought back such sad memories for me. My mom had cancer and was on chemo and went into septic shock. She was stubborn and wouldn't go to the dr until it was too late. She went into a coma on a Friday night and died on Sunday. I was planning a trip on the Saturday to see her, however, I got there too late to say good bye. I don't think her oncologist warned her of the dangers of chemo enough. Also, she had been in the hospital a couple of years prior to that and picked up a staph infection during that stay. Those things never go away, they just linger in your body until you are too weak to fight and then come roaring back with a vengence. It's terrible to think you can get so sick while in the hospital, a place you go to to get well. Makes me leary of going to one.
Thank goodness your hubby was there to call 911. So glad you have so much support from your family.
Hopefully your doctors can come up with a new and improved treatment plan for you after your recovery. There are some new drugs out there, probably a whole lot safer than cytoxin. My dr was talking about trying that when he put me on cellcept. So far, so good, knock on wood.
Please take care of yourself. We miss you!
Lots of hugs.

#10 jefa


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Posted 08 February 2007 - 12:08 AM

As always, your positive attitude is an inspiration to us all. I got shivers reading about your close call, Janey, and I am delighted that you came out on top in this very scary experience. I have missed seeing your name on the boards and sent you a pm a week or so ago to say that, but no response left me feeling a bit worried. Then Shelley said something about lost emails to staff and I thought maybe that was the problem and that you were on holiday or something. Some holiday, right? Anyway, glad you are on the mend and please take it easy getting back up to speed -- you don't need to have a relapse. So good to see you back.

#11 Heidi


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Posted 08 February 2007 - 02:23 AM

Hi Janey,

I can not begin to put into words how great it is to have you back and posting! I have been so worried about you and can not even believe all you have been through! Wow! So, did no one ever catch on to the fact that you had pneumonia??

I am just so sorry you had to go through all of that, but so happy you have pulled through the worst of it. I am sure your husband was so scared. I am glad that you have such a wonderful and supportive family surrounding you with their love and care right now.

As others have said, I am sure your positive, optimistic, upbeat attitude had a lot to do with how well you recovered and are continuing to recover! You truly are remarkable and an inspiration to us all. That said, please, please, please do NOT over do it! Don't push yourself too hard, but take the time you need to recover. No relapses are allowed! :rolleyes:

Lots of love and warm wishes,

#12 nan


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Posted 08 February 2007 - 04:32 AM

Bless your heart!!! What an ordeal your poor body has been through..... Your spirits sound great. It sounds like you're on the mend and moving in the right direction. Please take it easy!

#13 Margaret


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Posted 08 February 2007 - 05:13 AM

Hi Janey ,

I should have read this first before e-mailing you privately about the Medscape article. That is so scary.......please, put yourself number 1 on your list and take care of yourself. You are in my thoughts.

#14 Patty


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Posted 08 February 2007 - 08:23 AM

(((((((((Janey )))))))))))))))))
WOW is all I can think to say and welcome back! I was wondering where you have been. Glad that you are on the mend and doing better.


If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#15 LisaBulman


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Posted 08 February 2007 - 10:42 AM

Hey Janey!
Welcome Back!!! We sure did miss you! I can't believe everything that you have been through. Wow, thirty pounds from the fluids they pumped in is enough to make you feel lousy never mind being so sick. Are you feeling better now? You are one tough cookie. Please, please, please do not push yourself.

I have been thinking about you the whole time, sending positive thoughts your way! At first I thought maybe you ran away on vaction.... but Shelley actually confirmed you were admitted to the hospital and not on an island somewhere. B)

Missed you and glad you are back!!!!

Lisa Bulman
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#16 kiwimum03


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Posted 08 February 2007 - 12:10 PM

Dear Janey,

what an ordeal! You must be pleased to be home though, and let your caring family look after you.

BIG >>>>>HUGS<<<<<, and take it easy!


#17 Clementine


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Posted 08 February 2007 - 03:59 PM

Wow. I am so sad to hear what you just went through. It resembles my initial diagnosis. What did you have to send you into the dr. besides the cough? Were you feeling like you had pneumonia?

I am sitting here worrying about the lines on my face and here you are in ICU. I am so sorry!!

I hope you are soon feeling better and recuperate quickly. I bet you are so glad to get back home.

Take it easy,

#18 ShawMJ


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Posted 08 February 2007 - 08:58 PM

Hi Janey and welcome back.I've been wondering where you were and am so sorry that you went through such an ordeal! I'll say like everyone else thankfully we have good husbands to take care of us ,yet I know he was so worried about you,my husband gets this 'lost'look on his face.I'm also happy that you have a good support system with family and friends.Do please take care of yourself.son't push yourself and you will get well.Your attitude speaks volumes for you.Once again so glad you're back.Take care and maybe now that you're home you can SMILE! Hugs,Mary-La.

#19 susie54


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Posted 09 February 2007 - 02:21 AM

Oh Janey, you have been through so much. Please take it very easy for a long time. Infection really is an enemy of MCTD> I have that also. Your husband should get an award for taking so much responsibility and care. You made smart decisions and please rest. Glad you are home now. Susie54

#20 americanmike


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Posted 09 February 2007 - 04:04 PM

You mean so much to so many people! Your post and kindness has meant so much to me personally. Thank Goodness you made it through that ordeal. It sounds like it was incredibly dangerous and sobering. I'm so glad you won that harrowing battle!! You are so strong.

Bless you Bless you Bless you a thousand times.

Michael in Florida