View Full Version : Our story
06-23-2009, 10:10 PM
My wife has SLE this is our story....June 08 my wife started having trouble with her ankles swelling we didnt know what to do or what it was the local hospital was baffled 2 weeks later with no improvement we went 12o miles to a larger hospital they tested her for everything even tick borne diseases you name it she was tested for it,they finally found out and diagnosed her with Lupus nephritis and started a regimen of cytoxin,steroids,and was giving her blood transfusions as her red cells were low,two weeks in the hospital they had her fair enough to go home but her blood pressure was really out of whack and almost impossible to regulate it was just yo-yoing up and down,we struggled on ,her weight had always been 120lbs but shot up to 190lbs in a few weeks due to all the fluids in her system then when she got home she couldnt eat anything and dropped down to 90lbs we continued with visits to her rheumatologist . October 2008 she had a stroke and was airlifted to the hospital she went into neurotrama intensive care and was in and out for a couple of days then transferred to the stroke unit where she continued to improve at that time she was on 250mg day of prednisone,cytoxin and multiple meds for her blood pressure during the first week she improved a little her kidney function hovered right around the point of needing dialysis but thankfully her kidneys continued to improve the doctors told me there was a need to install a peg line in her stomach to feed her through as she was left paralyzed on her right side by the stroke, on the 14th day when she was scheduled to go to the rehab center that morning she got up on the side of the bed dressed herself and brushed her hair,saturday at the rehab center they injected medications thru her peg tube into her stomach and she had a lot of pain we questioned the nurse and she told the doctor he ordered an xray with contrast through the peg tube,they said there were no problems with it ,sunday morning about 2am the nurse came in to give my wife meds again thru the peg line she tried to set up and was screaming that her stomach was burning i told the nurse that we werent putting anything else thru the peg line until a doctor looked at it ,that morning later they sent her back to the hospital the doctor looked at it and said it hadnt been placed correctly and the medications had leaked into her abdominal cavity...they sent her back to rehab and about 3pm her blood pressure crashed they took her by ambulance to the hospital she was placed on an observation floor after going thru the emergency room,well we were there and basically i would have to go get one of the nurses and make them take her blood pressure she was there several hours and the trend was her blood pressure was dropping steadily she only had the tiny bag of iv fluids that the paramedics had started on her finally i made one of the nurses take her blood pressure aand she couldnt get it until the fourth try and it was 40/30 i started screaming and yelling at the nurses to do something then they unplugged her bed and wheeled it down stairs to the critical care unit where they dropped bag after bag of iv into her as fast as the machine would pump ,her rheumatologist said that the meds they had given her were like poison to her body once they had spilled into her abdomen ,the next morning she was transferred to a wing where they could monitor her heart as it was left very erratic ...her blood pressure had shot up to 200/120 and her heart rate was 165-180 at this time she was completely out when she would come to she would not make any sense and seemed to be hallucinating we were there for a week then they transferred her back to the rehab unit the day they transferred her her blood pressure was 188/120 they started a regimen of iv antibiotics every 6 hours she had a pic line installed as all of her veins had been blowed out by this time ,she seemed to get worse at rehab during the first few days she developed double pneumonia prob as a result of aspirating water ,saliva,etc her red blood cells dropped ,she developed a blood clot in her arm from the pic line and she was thouroughly infected in her abdomen ,the iv antibiotics continued for 4-5 days then her belly started swelling they pulled the pic line and put a central line in her neck to give her meds and to feed her as they suspected the peg tube was leaking still,she was taken to the hospital and they did surgery to open her abdomen and clean out the infection they put a wound vac on it and left it open for a few days then cleaned it out a second time they left it to heal as an open wound ,the next few days she improved dramatically the infection was leaving her body we went home after 45 days in the hospital she did therapy up until april of 09 and she is today walking fine has limited use of her right hand ,her speech is good and she has went back to driving and doing pretty much anything and everything she did before mainly she can eat anything she wants and drink ,i cant imagine how miserable she had been only getting a wet sponge to wet her mouth for 45 days ,I dont mean to bore anyone with my story but honestly we had no one thru this whole ordeal,i stayed with her for the 45 days and it gets pretty depressing and lonely knowing she has family and they couldnt be bothered to come help me on the upside i work for one of the best companys ever i took off about 2 months and never missed a paycheck they were truly a blessing ,she just did a 24 hour urine and she is losing alot of proteins so back on the cellcept today ,but whatever it takes she will never go down without a fight ...............she is 27
06-23-2009, 10:52 PM
Hello and Welcome Alovinghusband....:wavey:
You are most certainly a loving husband! Wow....what an incredibly amazing story! First off, I must offer gentle hugs to both you and your wife. :hug: I cannot believe all that she has been through. and with you right by her side all the way. She is one very lucky woman...first, just to be alive, after hearing that story....and second, to have a husband that is such a strong support through everything. Sounds like you are both blessed to have each other. I sat on the edge of my seat reading the story you told, and I was so afraid it was going to have a terrible ending....not the case. I'm overjoyed that your wife survived all that. She has got to be one incredibly tough woman. You're right, you summed it up there at the end.....she's never going down without a fight! And you know what? That's what it takes with Lupus. I've lived with this for 27 years now, diganosed when I was only 18, and I have fought many, many hard battles along the way....and I know the reason I am here is because I refuse to let Lupus take me. I will not let it win!
I would like to ask one question, if I may.....through the story I was shaking my head at the way the hospital handled some things, so I'm wondering where you are from? What country is this hospital in? It is certainly my opinion, but it sounds like an incredibly incompetent hospital. I'm amazed that YOU had to insist the nurses take your wife's blood pressure. I'm sorry for all the stress they put you through.
I'm glad you decided to join us and shared your wife's story. Thank you for taking the time to do that. Your wife is so young.....and she must have been so very scared through all of this. Please tell her I'm glad she came through it.
My heart aches for you...that your family wasn't there to support both of you when you desperately needed it. But you have found us now....and we have a family here on this forum of very caring, supportive, compassionate, helpful people that ALWAYS support each other through everything. We would love to have you and your wife join us and let us help you through the challenges ahead. You do not need to be alone any longer. We are here to lift you up when you need it, listen whenever you want to talk, encourage you in your battle, and answer your questions along the way. And we have some laughs and fun as well.
Again, I'm glad you found us and most of all, glad that your wife is a survivor. You are a wonderful husband and partner. :heart:
06-23-2009, 11:31 PM
I am sorry to hear all that you and your wife had to endure, but I am glad you both have made it through. Lupus will challenge every aspect of your marriage, your friendships, and your family relations. Know that you have found a "family" with us. We will be here when others can not. Thank you for sharing your story. I know that my marriage has pulled me through many Lupus flares, my husband is my rock. I am happy that your wife has you and you both found this site. :You_Rock_Emoticon: Stay strong!:grouphug:
06-24-2009, 05:00 AM
WOW what a story, and to be so young....i am stunned at all that you and your wife have endured. Like Lori, i wonder where you live, sounds like your hospital did not provide the attention and care that you and your wife deserved and required. Seems to be a lot of transfers back and forth, and sounds like they spent most of the time just moving her around.
Many of our members have experienced strokes during their lives with lupus....how frightening it must have been for her to be so young. I am thrilled that she has regained so much of her life, and i know that she is forever grateful to you for this....sounds like YOU (not the drs and nurses) saved her life.
We have other husbands who have joined and shared their stories about their wives battle, and in each case, the husband has stood beside their mate and has ensured their recovery.....what a wonderful man you are, and i hope you are getting the rest that you so deserve.
So many of our members have experienced the reality of family members turning a deaf ear on what this disease truly does to our bodies. Some members have lost their partner, and many have lost friends. It is such a difficult lesson, but it is a reality of this disease. Thank goodness you and your wife have each other, and i know that love is the foundation of your marriage. Please know that we understand what you have faced, and we are here to stand by you and your wife.
I hope that things continue to improve for your wife, and please keep us posted on her progress.
06-24-2009, 06:33 AM
Hi you, ALovingHusband...
As I was reading a year in your wife’s and your life I was saddened, my heart ached. I was flooded with anger at incompetence, but by the end I felt both of your strength, your love, your perseverance. Hardly boring…True love.
Lupus even if the one has it, it affects everyone we love. Hugs to you, Alovinghusband.
Your wife's strength is much to be admire...hugs.
Thank you for sharing a part of your life with us.
Hugs with love,
06-24-2009, 11:31 AM
Oh my goodness what a WONDERFUL man you are! I am so sorry for what you and your wife have been through. Especially at the tender age of 27 at that. What a STRONG woman she seems to be though considering how she CAME BACK from it all! WOO HOO to that!! I am SO HAPPY to hear that you COULD be there through it all due to your place of employment being so KIND and UNDERSTANDING. That was one less burden you had o worry about. As if you didnt have enough on your plate. Its so sad that her family wasnt there to help out,so sad. She is VERY FORTUNATE to have you for her husband. You defiantely SHOWED her you are there for her through sickness and health. HOW BEAUTIFUL. I wish the 2 of you the VERY BEST and please come chat with us whenever you or your wife need some extra sets of ears for listening! We are HERE FOR YOU BOTH!!!!:yes: GOOD LUCK!!!!!!! XXXXXXXXXXXXXXXXXXXX
06-24-2009, 01:00 PM
Hi there, Alovinghusband,
I am very sorry, that you and your wife had to go through this hell. And I know how it is to have a husband who is loving and supportive like you, we do appreciate men like you. I wouldn't know how to go through all this without my husband.
And hats up to your employer, giving you all that time off, with pay.
06-24-2009, 02:33 PM
What a great husband you are!
We all hope that your wife continues to get better and that your wonderful relationship just gets stronger and stronger. Come back and update us often.
Take care of yourself, too, since she needs you to be strong and happy!
06-24-2009, 07:57 PM
Your story moved me to tears. Like Rastagirl, I was afraid this story wasn't going to end happily. God bless you and your wife for all that you have been through together and for having eachother during that time. I am glad to hear that your wife is feeling better. Welcome to our group. We are here for you whenever you need a gentle hug, a laugh, some advise or a good rant.
06-25-2009, 09:01 AM
A loving husband-
What a blessing you are to your wife. I am so glad she has somebody like you to be there for her. I am so afraid that I will go through something like that and nobody will be there for me-although my boyfriend is so loving and I truly believe he would be there for me.
People with diseases like this are often left alone and have nobody or nothing to look forward to. People like you make it all worth fighting for. Thank you for your inspirational story and for being there for her.
06-25-2009, 01:45 PM
You are SO RIGHT Debbie! A supportive hubby can make a world of difference through this all!!! I take my hat off to my CARL as well! I love you baby!!!!! This is so clicheish, but he truely IS my ROCK, MY LOVER and my FRIEND:hug:
06-25-2009, 03:49 PM
May God Bless you both and it is so wonderfull to hear of the amazing support you have for your wife and all the love that you give her. I pray that things will soon im prove over time untill then you are in my thoughts and prayers. Bonita
06-25-2009, 04:38 PM
Wow..what a story....what a husband...what a wife,so strong.You are a blessing.Thanks for sharing your story.You are a wonderful husband. Thinking of you both n sending you lots of love.Glad you found us too.