Terrywags
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Terrywags, December 13,  2018  8:19pm EST

I am so lost....

28 days ago the love of my life, my husband of 20 years, had a massive heart attack.  By the time I got to the small community hospital where he had been transported by local ems, he had coded 3 times.  In the six hours following I would be told to say goodbye, and he would code 3 more times and then become stable enough to move fom the ER to the CCU.  While there he coded two more times, the last one for 27 minutes.  The staf worked and worked on him, with me standing by yelling at him not to leave me.  He came back.  All cognitive function fully intact.  Intubated, in full kidney failure, bleeding internally from extreme life saving measure that ruptured the lining of his stomach.  We managed to trasport to a fantastic hospital with an amazing heart center.  The cath lab showed 92% blockage in the widowmaker.  Two stents were placed, along with an impella.  He was placed on full assit diaylsis.  Much to everyones surpirse, inclduing the doctors, in four days he was fully awake and trying to speak.  He was extubated on day 4.  The impella was removed in 7 days.  Endoscopic surgey clamped his stomach lining and stopped the internal bleeding.  He was moved from SICU to a heart floor to the heart failure ward.  In a few days he was sitting up in a chair, slowly walking the floor with aid, eating and beginning to pee.  We celebrate every ml of urine!  The doctors warned me that because he coded 8 times, there is severe heart muscle damage.  Today they placed an ICD in.  He hasn't had diaylsis in 4 days and it looks like his kidneys are trying, very slowly to come back.  But now the cardiologists are saying that in their opinion the damage will never heal, and in a few months we may be talking about putting him on the transplant list!  I am so scared, I am so alone.  I don't knw what to think or what to do.  We aren't rich, by any means.  I've lost his income.  His insurance will run out.  All our children (from previous marriages but we see them all as ours) have their lives and can't be with me all the time.  I am working, caring for our home which was his "job", caring for our pets, again, his job, dealing with the bills, again, his job, and trying to be at the hospital as much as possible.  I feel so alone and lost.  I am exhausted.  Our lives have been one of him caring for me - I have a genetic vascualr disorder.  He has never been sick or ill or injured a day in his life.  Heart transplant! Oh My God! 

9 Replies
  • AHAASAKatie
    AHAASAKatie, December 14,  2018  8:59am EST

    First, please know that you are not alone. We are here with you in spirit and experience. I can share some of the resources that we have regarding patient advocacy and insurance. 

    Please look into the Patient Advocate Foundation (PAF). The PAF is a national non-profit organization that serves as an active liaison between the patient and their insurer, employer and/or creditors to resolve insurance, job retention and/or debt crisis matters relative to their diagnosis through case managers, doctors, and attorneys. Patient Advocate Foundation seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability.  Another option is to contact PAN- the Patient Advocacy Network.

    Our other members may have a few suggestions for you as well. Please share with us often and know that you are in a safe space here. Best Katie

     

  • marshamd59
    marshamd59, December 14,  2018  9:41am EST

    Wow, you have been through a lot and have seen lots of miracles already. Hang on to that! Your husband seems determined to prove the doctors wrong which is great! I would just say to try not to panic. Take it one day at a time. I know it's hard, but for now just work on getting him home. Use the resources Katie suggested to help you. Try to get the rest you need, because you can't help him if you aren't taking care of yourself. If you need to ask your doctor for something to help you sleep. Sometimes when we have so much on our minds we can't get the rest we desperately need that will help us deal with things better. Know that the doctors aren't always right. He may do better than they think and his heart damage might be managed for a long time with medication. You just never know and sometimes all you hear is the worse from the doctors, but that's not always how things go in the end. Keep the faith and hope alive. Know that we are here for you and let us know how things progress.

    Bless you and your husband!

    Michelle

  • JKViggiano
    JKViggiano, December 14,  2018  12:40pm EST

    Hi Terrywags.  I completely relate to your story. My husband suffered a massive stroke that left him disabled physically and cognitively. He was our sole wage earner and we had kids at home.  It was a terrible, lonely, exhausting place to be. 

    I encourage you, as did a previous writer, to take it one day at a time. Today is the day you have. Sounds like your husband is improving so tomorrow may look very different. Your needs will probably change. Try not to waste your energy worrying about things that may or may not happen. We are 11 years post-stroke and I still try not to look ahead too far.

    Do you have a church family? Are friends nearby? Are you kids in town? Ask for help! Be specific--I need food, I need help with pets, I need a ride, will someone come and pray with me, whatever it is. It was my experience that many people want to help but don't know how. Being specific helped everyone.

    For me, scheduling my time helped. I did house stuff in the morning, spent the afternoon with my husband in the hospital, dinner and homework with the kids, then learned the accounting system in the evening. By having a schedule, things got done and I was able to focus on each activity. It took discipline but it helped us all get through an awful time in our lives.

    None of this is easy but you can do it with help. Good luck.

  • JeffB
    JeffB, December 14,  2018  12:59pm EST
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    Terry,

    I am glad that you have your husband with you today. And him you.

    The only thing I can relate is that I became one of 5 caregivers for a father figure of mine, and best friend for 30+ years, last August when he suffered a massive hemorrhagic stroke and was not discovered for around 45 minutes. His life changed radically after that and was in rehab centers through Christmas 2017. It was a really bad year.

    Having had a heart attack myself two years earlier, I went further into the stress of it than I should have but the need was great. That said, after a year, I chose to incorporate other members of his friend’s circle and sort of spread out the responsibilities more. It really helped with both my stress levels and his social activity (which is really important to fight off depression).

    Being a caregiver is one of the most difficult things a person can do. Be kind to yourself. Seek support. Take breaks and rest when you need to. As far as resources go, talk with the hospital, other members on this site, and anyone in your network (friends, family, community members) who you can and build a support framework both for yourself and your husband. Every little bit helps.

    I wish you continued luck and love this Christmas.

    Jeff

  • AmbassadorB
    AmbassadorB, December 14,  2018  1:05pm EST

    Hi Terrywags!

    You're the most important element in your husband's successful recovery!  He clearly is a fighter and his love for you is creating the strength and attitude that will keep him on the recovery road!    He's going to make it!   He is getting the finest professional medical support that he can - which is obvious from your comments.  

    Your dedication and support will sustain him through the next few weeks - get him up and walking, and get him back home where his recovery will continue.  You have to remain the steadfast,loving partner - with him.   You've already been advised to make sure that you stay well, rested, and the strong love by his side.  I only repeat that.

    I've been there, and come through the procedures that your husband is getting.    I know that the love and dedication of my partner, God Love Her, is where the strength and fight that I needed and used is what sustained me.  I also know what an emotional and physical drain it was for her, and she would quickly agree with me.  So, Terrywags, as long as your partner knows that your love for him is strong and well, he will surely enjoy a good recovery!   Kimberly referred you to some excellent aids.  Take a moment and review them.

    All the best!   Stay fresh and well. 

    Ambassador B

  • Spooky75
    Spooky75, December 14,  2018  3:55pm EST

    Thanks for sharing your story - and know that we're all here for you!

    I remember watching my mom take care of my grandpa after he suffered multiple strokes and other health problems. It was very tough for her. What was extremely important was having a support network. Just having someone's shoulder to cry on can be helpful. Please be sure to seek out a family member or friend who is willing to answer their phone no matter what time you call. Know that it's totally okay to feel frustrated and sad and angry. That's normal.

    And remember you can always reach out to us on this network. 

     

  • JamesPL
    JamesPL, December 14,  2018  8:11pm EST

    Hi Terrywags,

    I am so sorry for this difficult experience your are facing. As everyone here has expressed, it's very important that you also take care of yourself. You have to do your best to take each day as it comes. Also understand that even though the thought of a possible heart transplant can be frightening, this procedure has advanced significantly since it was first done in the 60s. There are thousands of transplants done annually and patients are recovering and leading normal lives afterward. When I was first facing open heart surgery, I was extremely scared. Much of that was due to the fact that I had limited knowledge about the success of the operation I was facing. I was later comforted by many people who had faced the same procedure and recovered well. This gave me a breath of fresh air and renewed confidence in my own recovery. My wife acknowledged all of this as she was telling me the story of how I looked when I was first coming out of surgery. As she told the story, she had a look on her face of real fear. I had never seen that look from her before. So your fears may be strong but you have to remain as positive and as strong as you can. Have faith in our technological ability today and the expertice of the surgeons using that technology.

    I wish all the best for you and your husband during this difficult experience and also wish him well in his continuing recovery!

    Jim

  • mrsddriver57
    mrsddriver57, January 5,  2019  7:02pm EST

    Thank you for sharing your story.  My husband had a TIA stroke in March of 2018.  He would not let me take him to the hospital for 4 days.  I finally told him I was taking him to the ER, so after my morning school bus run, I took him to the ER.  I had to leave and have lunch and go back to work.  He told me to.  After work I went back to the hospital and he was still in the ER, waiting to be admitted.  He was in the hospital for 8 days.  I was there every day.  Luckily, spring break had started a couple of days after he was in.  I spent as much time as I could in his room with him.  I also ran errands, buying things he would need when he got home.  We were supposed to go on vacation that week to Texas, but spent it here in the hospital instead.  I was nervous at first when he got back home.  I was afraid he would fall.  I had to help him with lots of things, bathing, drying, dressing, had to do the laundry, which he usually does, the dishes, which he does also, give him his meals and his medicines, and a few days after he got home, I had to go back to work.  I was afraid of leaving him at home.  He finally got physical therapy at home, and when that was done, out patient physical therapy and occupational therapy.  During the summer, he was diagnosed with pancreatic cancer, and in October he had major surgery.  He had the tail of his pancreas and his spleen removed.  He had complications a few days after surgery, and was moved to ICU.  He was in ICU for 2 days, and once in a regular room again, ended up with a fever.  They said it was the flue.  He went to a Rehab nursing home for about 3 weeks for physical therapy and to heal better.  While in the nursing home, he developed pneumonia, which I think he already had in the hospital, not the flue, and also developed a blood clot in his leg.  Since the hospital was over an hour away, I took time off of work and stayed in his room while he was there.  I even called out for a few more days, since he was there longer than they thought he would be.  He finally told me to go back to work, so I didn't see him for 2 days.  On Friday night I went back to the hospital.  On Saturday he got transferred to the nursing home close to us.  I went to the nursing home inbetween runs every week day, and all day on Saturday, and a few hours on Sunday, in between church.  I had to wash his clothes at home every night.  I know what you are going through as a caregiver.  My husband is improving, does not need as much help now, but I still need to do some things for him.  Oh, while my husband was in the hospital, my father-in-law ended up in the hospital, and then they finally brought him to the rehab that my husband was going to go to.  He yelled and screamed all night, wanting to go home.  They could not force him to stay there.  When he got home on Saturday, he fell twice.  My husband was being transferred that day, so I was on my way up there ahead of him.  My mother-in-law called to say she was at urgent care, and dad did not answer the phone, so I had to go to make sure he was ok.  I tried to call, and got no answer, so I called 911 to get a cop to do a wellness check on my father-in-law, since I was still over an hour away.  They called me back and said he was on the floor.  They called ems to get my father-in-law up into his chair.  The bed that my husband got was the one my father-in-law had been in.  My father-in-law recently got diagnosed with congestive heart failure, ended up in the hospital, and on Christmas Day night, he passed away.  His funeral was on New Year's Eve.  He was 93, and ready to go to be with the Lord and his family.  He was the last one living of his siblings.  You do need to try to find some time to rest and relax as a caregiver.  

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