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cwcindylou
07-02-2009, 12:36 AM
How do you begin to tell a story that happened so fast? I’ll do my best with help from her husband and son. So I found out from my mother on February 17, 2009 that my sister Patty age 52 (2nd in line of 4 girls) is in the hospital with what they think is double pneumonia. She went in on February 12th after a second visit to her doctor from January 18th. I had talked to her on line on January 25th and she indicated that she had bronchitis and had not been on line much. So I call her at the hospital on February 17th to find out what is going on. She is getting out of the shower and answered the phone saying that they figured she had double pneumonia and she was on what they call T oxygen…which is just the two prongs up her nose to help her breath a little better because she cannot catch her breath. They are going to do a test on her the next day to check on the status of her lungs by running a scope down and taking a biopsy of her lung. I told her I would wait and call her on Thursday after she is more coherent. Her husband is with her and she assures me she doesn’t need us to come. I called again on Thursday and spoke to her for just a minute because they have now put her on a facemask and are in the process of giving her blood. By Saturday morning we are getting a call that they are sedating her and putting her on a respirator and in ICU because her breathing levels/oxygenization levels are too low to be safe. Ok, so I know of someone else that had to be on a respirator for a little while so I’m not panicking, but concerned.
Her lungs are bleeding and there is an issue of some sort with her kidneys.
The results of the biopsy came back in this time to determine she has some sort of vasculitus disease but not sure of which one yet. The doctors need to do a biopsy of her kidneys and need to turn her on her side to get the biopsy. If you turn her the oxygenization levels go to and even lower more dangerous level. By Wednesday, February 25h they are able to get the biopsy and two days later able to determine she has Wegener’s. They immediately begin her Chemo treatment, and are doing kidney dialysis every so many days until her kidneys can kick in and start working again on their own. Her son and his girl friend fly in from California and spend every day in the room with her to now allow her husband to hopefully go home and get some sleep in his own bed instead of the hospital recliner in her room/ICU. We go to visit and she is swollen but the nurses say she is better than the day before. Her son knows how to read all of the machines that are hooked up to her and I start to understand some of the readings more each time I go. After two week’s on the respirator the doctors want to take this out of her throat in order to not damage her vocal cords and give her a treach. This too does not cause me to panic because it make’s since that she may need that for a short period of time. One of my visits on March 8th she opens her eyes but is very distant and doesn’t know who is in the room. By Wednesday, March 11th her husband say’s she is off the respirator and is starting her physical therapy and is mouthing words to him. She said she wants to go home. We go to visit again on March 14th, and she knows we are there, blows us kisses and smiles at some of the things we are talking about, but is beginning to labor a little more to breath but they are talking about taking the pick line out of her left arm because she is not on as much medication and does not need the line. These lines will cause infection after awhile. Eventually she is tired and goes to sleep, so after several hours we decide to leave for this visit. By Sunday they are checking on her lungs again and find they are worse and she is back on the respirator. One of the nurses had told me that she might go back and forth for a little while until she is completely off the respirator. The rest of the week they are medicating her and giving her kidney dialysis and discussing with her husband about giving her 2nd Chemo treatment a week early (given monthly). Her husband has determined that when she has kidney dialysis she is either very, very hot afterwards or very, very cold and shivering. He has decided he can keep her calm if he is there right after the procedure. Early Friday morning on March 20th they begin the kidney dialysis and call her husband to come in to be there when she is done. He arrives at the hospital to meet a nurse in the hall with news that while the procedure is being done they always do an evaluation and they discover that one of her eyes is dilated. This is cause for concern that something else is going on. They rush her back to have a CAT scan and determine that she has bleeding on the brain about the size of an egg. She is flown up to VCU in Richmond and also given a CAT scan to determine that there is a place the size of a walnut. The doctor informs her husband that he can operate but 95% she would not survive that operation and 99% if she did survive her quality of life would not be what she had indicated she would want. She is now placed in the Pallative Care Unit at VCU and passed away peacefully in her husband’s arms on March 26, 2009.

crackers
07-02-2009, 01:18 AM
that is the saddest and the scariest post i have read on here.first let me say my heart goes out to you and all members of the family.you all must be devastated and feel like you've been robbed of a daughter,sister,mother and wife in such a short time.god i hate this disease for what it's done and is still doing to us all.my thoughts are with you all.
john.

cwcindylou
07-02-2009, 06:43 AM
It only began in December. I saw her on December 20th and she had a cold she could not shake. By new-years eve she told her husband she was feeling so bad, but they continued with their evening plans. I later found posts on a website where she began to tell how she was feeling before she knew what she had:

January 5th:
She said her blood ran cold. She could not get warm. Had never felt the blood actually run cold through her veins like this before.

January 18th:
Every muscle in her body hurt, cough up blood, sick on her stomach when she ate, run a fever, ribs hurt/bruised from coughing...going to the Dr. tomorrow.

January 19th:

Dr. says she has bronchitis.

February 8th:

She talks about drinking too much water and that she feels sick from how much she has been drinking.


February 9th:

She explains she has been feeling sick since December 31st and not getting any better. Has meds from January but now has a sinus infection.
Her feet are swollen, Hands say cold, have not eaten a full meal since Dec. 30th, her knees are weak so it is hard to stand up, either blowing her nose or coughing, she can hear her heart beat in her right ear, pulled a muscle in her side from coughing, her neck hurts which was running down to her left shoulder, thirsty all the time, stays cold all the time so she was sleeping with a heating pad. She had a follow-up appt. on February 19th but her husband took her back two days later and they put her right in the hospital.

Doug
07-02-2009, 07:31 AM
Sad indeed. I guess each of us projected her or himself into the story and thanked whatever force we draw on that our stories ended on a happier note. Devastating. Cindy Lou, please give my condolances to your brother-in-law. To this day, I remember the cold and how it came to be what I think of when I think of death and how it will announce its coming.

Terri
07-02-2009, 10:10 AM
Please know that you and your loved ones are in my thoughts and prayers and thank you for posting this story. It makes me know how fortunate I am .
Even on my worse days I always know there is someone worse than I am.
So sad to hear this type of story but we do need to know this happens.
Thanks again for your strength to tell us.

coffeelover
07-04-2009, 05:05 AM
I am so sorry for your loss.

Your story is good in that it reminds us how fast this disease can grab us and to not waste time when in need of medical attention.
Thank you for your strength and courage to talk with us and thank you for the reminder we all need from time to time.
I hope your family can find peace.
Lisa

jola57
07-09-2009, 10:25 AM
This is so close, I am 52. I am so sorry for your loss and thank you for sharing your sister's story. I am thankfulthat this drated disease has so far showed only some of its symptom to me. The bleeding in the brain is at least very rare but the consequences so grave. Please accept my gratitude for comming onto this forum and my thoughts and prayers are with you and your family.

Sangye
07-13-2009, 01:41 PM
What a devastating story. I'm so sorry. There are all kinds of ways it might help save another life, so I thank you for sharing it with us. May you and your family find peace.

lovelynikki
09-10-2009, 11:06 AM
Stories here can break hearts. It's so sad that your family experience that situation. But still so lucky that your family can fight the struggles come in to your life.