Don't ignore warning signs!

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python
Regular Member


Date Joined Apr 2003
Total Posts : 104
   Posted 7/29/2010 2:53 PM (GMT -7)   
Hello everyone, long time since I've been here. Had a tickling cough in the first week of april, then woke up having trouble breathing. Went to the ER and was told I had double pneumonia again. They transferred me to a larger hospital where I went straight into ICU on a vent for 30 days. Was given a 50%chance. Docs did a lung biopsy and discovered that my MCTD had attacked my lungs. I spent 105 days in the hospital on then off the vent with a tracheotomy.Now having to do physical therapy and learn to walk all over again, and will have to be on oxygen for a while which sucks cause my oven and cooktop are gas!
I hope everyone is doing as well as can be.
Hot tea and gentle hugs,
Donna
MCTD (SLE, Scleraderma, polymyocitis), Reynaud's, Hypo-Thyroidism, Pericardial Effusion/pericarditis, Irregular heartbeat, Hiatal hernia.
 Prednisone, Procardia XL, Methotrexate, Reglan, Lasix, Nexium, Potassium, Folic Acid, Synthroid, Imuran, Crestor,Toprol, 81mg Aspirin, Vitamin D, Vitamin C, Multivitamin, Extra Strength Tylenol, Flexeril, Vicodin.


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 7/29/2010 4:06 PM (GMT -7)   
Oh huge hugs to you Donna! I'm so sorry you have had so much going on.The good things about the oxygen is it's not as sensitive as one might think. I have been on it for 6 years and havn't blown anyone up yet! When I use my stove I cook like normal but when stick my head in the oven with all the heat I just throw my oxygen on the floor until I check up whatever I'm cooking. I remember people used to slowly move away from me when I was on oxygen. I've even dropped the tank out of my pack onto the concrete other then making people age 10 years it didn't do anything. I've even had 10 bottles in the car to go on a trip in arizona and it would be 120 degrees in the car when I'd go in shopping and I never had any problem.y biggest fear is if I have to had extra o2 with me and my bottle runs out and I switch the tank even though it says the tank is first it was obviously one that they messed! That's happened to me twice now. So you might want to check if the are full before you leave the house.
Just make sure you move as much as possible because like they say use them or lose them. Are they going to put you on a transplant list? Obiously it won't heal on it's own. I wish I would have known about your problems I would have written and called. I think everyone needs a emergency number since we all know in one way or another what you are going through. Just hang tough, I'll be praying for you.
hugs
carol
furosemide,spironel,lisinopril,lortab,azithromyazin,detrol
nexium,temazepam,predisone,plaquenil,propanalol,citracal,pottasium, vitB12 ,iron,xopenex,advair,spirivia,soma,Vitamin D, cybalta
Dx lupus, scleroderma, pos. fibro, high blood pressure. COPD, need left lung transplant. cervical cancer survivor, osteoporsis
 
Jesus is a friend of mine
We come into this world crying while all around us are smiling. May we so live that we go out of this world smiling while everybody around us is weeping.
 


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 7/30/2010 4:01 AM (GMT -7)   
I am so sorry that this is happening to you Donna. I really hope that you improve and are able to get better.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1547
   Posted 7/30/2010 5:47 AM (GMT -7)   
Donna I'm so sorry you're going thru all this. It sounds awful. Being on a vent for so long is bad enough, but also having a tracheotomy and being hospitalized for so long is more than anyone should have to go thru. I'm sure you had moments of wanting to give up, but I'm so glad you persevered. Hang tough Sweetie. I'm sending you lots of positive energy, prayers, and many hugs. Love ya, Donna
Systemic Lupus ('05), depression, fibro, sjogrens, cns issues, diabetes, gerd, hypertension, colitis, stage 1 kidney disease. Cellcept and lots of other meds.  Donna 


Weleetka
Regular Member


Date Joined Oct 2007
Total Posts : 184
   Posted 7/30/2010 9:05 AM (GMT -7)   
So sorry to hear this... that does sound like an awful thing to go through... hope you are better soon

python
Regular Member


Date Joined Apr 2003
Total Posts : 104
   Posted 8/21/2010 3:48 PM (GMT -7)   
Thank you so much for the prayers and well wishes. I am feeling much better now. I am still in my wheelchair because my legs are still shaky and exerting myself too much takes my breath away. My hubby could not be any more supportive, he cooks, cleans, does laundry and anything else I can't manage. He does encourage me to do what I can. I wouldn't have made it in the hospital without him-he stayed with me day and night and made sure I got my meds on time-to the point where he actually lost his job because he wouldn't leave me. (He has a better job now). I know I am very fortunate to have him.
Carol, they say I may have to have a transplant one day, which scares me half to death. I was told to just let them know when I was ready and we'd talk about it. My family and hubby's family are very supportive and say they will back me up on my decision, whatever it is. What worries me is what if the transplant surgery triggers my MCTD to attack other organs?  As it is now, I am on oxygen (2 liters) 24/7 and my pulmonologist says that's pretty much permanent at this point.
Thanks for reading
Hot tea and gentle hugs to all
Donna
MCTD (SLE, Scleraderma, polymyocitis), Reynaud's, Hypo-Thyroidism, Pericardial Effusion/pericarditis, Irregular heartbeat, Hiatal hernia.
 Prednisone, Procardia XL, Methotrexate, Reglan, Lasix, Nexium, Potassium, Folic Acid, Synthroid, Imuran, Crestor,Toprol, 81mg Aspirin, Vitamin D, Vitamin C, Multivitamin, Extra Strength Tylenol, Flexeril, Vicodin.

jdrea
Regular Member


Date Joined Aug 2010
Total Posts : 124
   Posted 8/22/2010 9:00 AM (GMT -7)   
I hope you get feeling better soon.
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