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Permalink Reply by Gail Evans on May 9, 2012 at 9:35pm

Dear Julie,
I am so sorry you have had to join this group. I lost my beloved partner of 19 years, Jean, on February 28th. Sharing that loss with others who truly understand has been a blessing, and I hope that you will also find comfort. Please know that I am sending healing prayers. Gail

Permalink Reply by nancy on May 9, 2012 at 9:42pm

Hi Julie. So sorry you've had to join our group. This is an awesome place to come to and vent or just follow. We are here to support each other....no judgement. Just lots of understanding and moral support. I have had a lot of healing since I joined this support group. Just know, there is no "normal". It's the most difficult nightmare I have ever had to live. Like I said, you will find lots of hugs, prayers, and comfort here. Peace

And don't let me forget...tons of wisdom here also!!!

Permalink Reply by Julie Larsen on May 9, 2012 at 10:29pm

I thought I had added this under the photo. Sorry I hooe to get it right this time.

I lost my Charlie one month ago. Although he had a lung transplant almost 9 years ago he was doing pretty well. I had been his caregiver before the transplant and for months afterward. I owned a business and had really decide to give it up if Charlie made it through the transplant so we could have a few good years. He wouldn't let me - said I might need it sometime, so I went back to it.

We never had children (married for 45 years -college sweethearts) so we were always together. Last year we decided that since I'll be turning 66 in June I should sell the shop and retire. Kept trying to sell it with no luck so we started a retirement sale. We were 2 weeks into the 8 week sale. One morning Charlie asked me if I could stay home to help him. I said maybe the next day. I had just gotten to work when he called me to say he had fallen from the tractor cab and broken his wrist. He had to have surgery in a city 70 miles from home. Infection from the open break or something in the surgery caused a terrible pneumonia (he had no immune system because of anti rejection drugs). We spent the next month in ICU. I tried to stay with him all the time until my brother came from out of state to split the nights with me. Terrible things started happening. Charlie was on a ventilator almost the whole time (they tried to take him off twice) He gained 50 pounds of fluid - he was so terribly swollen all over. He had constant pain from the wrist (the incision wouldn't heal). He sufferred a painful hematoma in his groin. His kidneys failed (put on continuous dialysis). Irregular heartbeat, low blood pressure, high heart rate. Finally a perforated bowel which would cause septis without surgery and of course he couldn't survive surgery. His muscles were starting to atrophy. They also thought he was starting to fail neurologically. We could hardly comunicate the whole time and I'm not sure he understood me at all the last two days. Charlie always said it wasn't living if all you did was go to the doctor and spend time in and out of hospital - now he was captive once again to the system. Best case was the that he might leave the hospital on a ventilator and dialysis for at least 6 months in an accute care facility - with who knows what to follow. I had to let him go. I made the decision on Easter Sunday. They loaded up the pain meds and took him off the vent. I never left the room. 30 hours later he died peacefully with me holding on to him and telling him how much I loved him.

We had a very nice funeral sevice and I made it through I thought very well. Then it hit me like running head on into a brick wall. I still had to get the shop closed. April 28 was the last day. Earlier on our home calendar I had written Celebrate! for that day. Instead it was one of the most terrible days of my life. It would have been so much fun to come home to Charlie. We would clebrate the freedom to do what we wanted for the few years we might have left. Instead I came home to an empty house. Nothing seems worth doing anymore.

I have the terrible guilt (I should have stayed home - I should have waited another day for the decision) and Charlie is just not here and never will be. I really can not see one good reason for going on. Iwant to be with Charlie.

Permalink Reply by Gail Evans on May 9, 2012 at 10:57pm

Dear Julie - You will see Charlie again, but until then he would want you to go on with your life and to know that he will always be in your heart. Yes, it is the hardest thing any of us has ever experienced, and we can only take one minute at a time. You can do it. Blessings.

Permalink Reply by Carol Kayser on May 10, 2012 at 1:44am

Dear Julie, you need to surround yourself with caring people so welcome here but sorry you had to join our group. I truly hope you have some friends and family to lean on through this difficult journey. People here, we all have and are going through loss and all that presents. It is hard to imagine yourself going on, but as Gail says, we can do it, if only in small spurts. You will cry, over and over until you think you will never stop crying, but that is part of grief and so also is the guilt. We all have it in one way or another, it is natural, but you shouldn't shoulder or carry that grief on yourself. Your Charlie knew how much you loved him and he still does, as he watches you.

Try to take small steps and do reach out, whether here or to people you know, it will really help. Be kind to yourself too.

Hugs,

Carol

Permalink Reply by Pamela Thomas on May 10, 2012 at 3:51pm

Hello Julie,

I'm so sorry you had to join this group. I lost my husband 3 years ago. He was 45 years old. So, i know how you are feeling. I pray that you find comfort in the memories that you two shared. This is a great support system. Being a widow is a journey, but with prayer and support groups we manage to take one day at a time.

Permalink Reply by janeo on May 10, 2012 at 7:49pm

I'm sorry also that your here on this journey of grief. But were all here to help when ever we can, so please talk to us when needed even just to ramble on. Your feelings are important to us and we listen without judgement.
Cyber hugs and prayers for you.

Permalink Reply by Karen Gleave on May 10, 2012 at 9:15pm

Permalink Reply by Karen Gleave on May 10, 2012 at 9:26pm

So sad to hear about this. It does happen that way sometimes. My late Dh was also on immunosuppressants - not because of a transplant, but because of an autoimmune blood disorder that was triggered after a bout with severe pneumonia.

At first there was expectation that he would recover completely - it generally either goes away by itself, or is treated with gradually decreasing doses of Prednisone. So we were hopeful for awhile, until eventually the antibodies started affecting other organs. And after awhile the Predinose became less and less effective - that's often the case. They did try one heavy-duty drug that's often used for chemotherapy, and it did work for awhile. But as you well know, these drugs make patients very vulnerable to infection. Eventually, he developed sepsis at the same time that his blood-antibody level soared. Trying that drug again, in the instance of sepsis, would have pretty much guaranteed a quick death. And even transfusions weren't doing anything - the blood was being destroyed almost as fast as it was being infused.

While he certainly hadn't been the picture of health beforehand, only about 3 weeks before death he was all set to be released from the hospital - and then everything came crashing down. We had about two weeks to prepare after the doctors recommended "palliative care only". It was hard for all of us to accept, but he did tell the palliative-care doctor that he was so tired of being poked-and-prodded, and hated how he had become so disabled during the prior year.

So yes, it does happen sometimes that they say "there's nothing more that we can do". For me, it's been less than 6 months, and every day is different. Just take one day at a time.

Permalink Reply by Julie Stearns on May 11, 2012 at 1:54am

Julie, welcome to the group we wish didn't exhist but thankful it does. I am so very sorry for your loss. I too went through the guilt and I know you have to walk through this but guilt serves no purpose, everything happens as it should. He knew you love him and vice versa. My husband passed from renal cell carcinoma that ate his bones, and took over his entire body. we didn't know as he was on disabilty and had no insurance , but then again he had 5 amazing yeares instead of chemo sick, chemo, sick, life is so very hard and I also lost my 21 year old son 6 years ago in june so both my guys are in heaven. Trust me work out the guilt and give it to god as it will eat you alive. Charlie is awaiting your arival but not until it is your time. It is never good bye, just see ya soon, they are our future and eternity is a loing time to be with them so find something to live for and honor your man by finding peace. hugs Julie S.

Permalink Reply by janeo on May 11, 2012 at 5:31am

Julie, o sent a message yesterday I'm sorry you didn't receive it. I so sorry for your loss. But you came to a site of full of love and support . We care and listen and that's important, so whether you need to express your feeling,.how your day is going and just to babble go right ahead. And my prayers are with you and I'm sure everyone else to.
Cyber hugs
Jane

Permalink Reply by Julie Larsen on May 11, 2012 at 8:59am

Karen:

I'm so sorry for your loss. It is a terrible trauma to watch someone we love suffer so much and then lose them on top of it. I'm still waiting for a death certificate as Charlie died out of state. no one has really been able to explain to me what actually happened. I have letters in to three of his main doctors but have had no replies. I have so many unanswered questions. Maybe I shouuld have allowed an autopsy just for peace of mind.

Being immunosuppressed just leads to so many other problems. Even if Charlie had survivied this time there would have been lots more trouble down the road. He had shingles a year ago. It's bad for anyone, but landed him in the hospital. Even an abcessed tooth could send him to bed for a week.

It was definitely not how he wanted to live.

Karen Gleave said:

So sad to hear about this. It does happen that way sometimes. My late Dh was also on immunosuppressants - not because of a transplant, but because of an autoimmune blood disorder that was triggered after a bout with severe pneumonia.

At first there was expectation that he would recover completely - it generally either goes away by itself, or is treated with gradually decreasing doses of Prednisone. So we were hopeful for awhile, until eventually the antibodies started affecting other organs. And after awhile the Predinose became less and less effective - that's often the case. They did try one heavy-duty drug that's often used for chemotherapy, and it did work for awhile. But as you well know, these drugs make patients very vulnerable to infection. Eventually, he developed sepsis at the same time that his blood-antibody level soared. Trying that drug again, in the instance of sepsis, would have pretty much guaranteed a quick death. And even transfusions weren't doing anything - the blood was being destroyed almost as fast as it was being infused.

While he certainly hadn't been the picture of health beforehand, only about 3 weeks before death he was all set to be released from the hospital - and then everything came crashing down. We had about two weeks to prepare after the doctors recommended "palliative care only". It was hard for all of us to accept, but he did tell the palliative-care doctor that he was so tired of being poked-and-prodded, and hated how he had become so disabled during the prior year.

So yes, it does happen sometimes that they say "there's nothing more that we can do". For me, it's been less than 6 months, and every day is different. Just take one day at a time.