Don't Want To Loose The Love Of My Life April 22,  2016  6:57pm EST

My husband had a stroke in June of 2004, we were not together at that time. We met through match.com in Dec 2006, fell in love at first sight and married on 08/08/08 wanted to give him a date easy to remember. He has 3 kids and I have 2 so together we have 5 wonderful children and as of 12/30/15 we have 7 Gkids, we enjoy being PawPaw and MawMaw. Despite his left arm being paralysed and deminished function in his left leg we have had a wonderful life together. At the time I met him I had reservations about his future health, my best friend told me wether we had 2 weeks, 2 months or 2 years of happiness it would be worth taking the leap, well at this point we have had about 9 1/2 years. In December 2014 we were driving home from a cruise and a 3 weeks visit with some friends we have in the Florida keys, our son and his family were coming home from CA for Christmas and I made the comment to my husband that we had the perfect life. I believe that was a challenge for the devil to see just how much he could destroy that condition. On January 28, 2015 my husband was given a pneumonia vaccine by his primary care doc that evening his blood pressure dropped very low and he had severe chills, took him to the local ER and told them his medical history of stroke and treated left side heart failure and the vaccine. Their assumption was a combination of reaction to vaccine and that he was dehydrated so they gave him 2 liters of saline over a 2 hour time period. Not sure if it was the vaccine or the overload of fluid at the ER but within 2 weeks we knew something was wrong, he just didn't feel right tired all the time, and short of breath. End of February he was hospitalized with fluid overload at that time they did an echo and it wasn't until the end of July that a heart failure specialist at the VA determined that the right side of his heart was enlarged and his tricuspid valve was leaking. 5 months of wasted time that could have been used for treatment and recovery. In August he was hospitalized again they determined that he needed a heart transplant and he was sent via ambulance to Nashville TN which is the closest VA hospital that does heart transplant, they are affiliated with Vanderbilt University hospital where the transplants are actually performed. He arrived on our 7th wedding anniversary and was in the hospital undergoing many many tests to see if he would qualify to be put on the transplant list. After all the tests was done they were still concerned that his previous stroke would keep him from being able to recover from the transplant. We were able to convince them that he had the drive and determinatiin to do the rehab. Finally they put him on the list as of August 21, 2015. They decided that it would extend the time he would be able to wait for a heart if they replaced his Tricuspid valve which was done on October 27 2015. The recovery was long and hard he was hospitalized for 65 days, but he did recover and went from having a 10-15% ejection fraction to 35-40% ejection fraction. At this point they were saying he could get by without a transplant so they put him on hold status. We returned home and he was getting stronger everyday until they cut the 3x a week blood tests to check his potassium levels to once a week his level dropped extremely low and he went into left ventricular tachycardia and was defibrillated causing more damage to his heart, he is back down to a 10% ejection fraction. Now they are saying that his heart is in such bad condition and they don't believe he will be able to survive long enough to wait for a heart est. 18mo to 2 yrs. And if he did they don't think he would survive the surgery, so as of April 12, 2016 they have taken him off the transplant list and put him on continuous IV Milrinone which has been described as temporary rocket fuel for the heart, they don't know how long this will sustain him. We have a very strong faith in Jesus Christ as our personal savior and have no doubt that God has been in control of this situation all along. I have been praying for a miracle of complete healing and still believe that this is still within his power. My husband waivers between believing in that same possible miracle and wanting it all to be over and this flipflop can happen several times a day. The last week and ahalf have been very difficult on both of us, I have been his constant caregiver since this decline over a year ago, he has always needed my help with somethings because of the stroke but now there are only a few things he can do for himself. I go back and forth wanting to blame someone or something the vaccine, the excess fluid given, the lack of blood checks etc., to wanting this all to be a bad dream. I want to believe that he will be healed but sometimes I let my mind go to the possibility that I will soon loose the love of my life. I will be alone again and may never find someone who would love me like he does. We have our moments of conflict but overall things between us are good, we are able to snuggle, hug and kiss. I get the occasional 15 second back rub (they used to be 30-45 min) but we haven't had sex since August. We try but he is afraid that his heart won't be able to take it. I don't want to loose him and I don't want to end up having bad feelings against him as I read in many of the comments on this site. It has been very helpful to get this off my chest, I have been keeping a blog journal on the caring bridge site since his surgery in Oct, that has been very helpful in keeping all of our friends and family informed about what is happening, I have been very lucky to have a good support system of friends and family. His home heath care nurse said today when she got the last set of orders when we came home last Friday they gave her an estimate of 20-23 months left and her last set of orders this week has reduced that to 6mo. This is the first time anyone has put a number to how long they think he has left, we have always been told that they don't know, I haven't told him what she said I don't think it would be good for his mood and I wish she hadn't told me. He goes from planning a trip to the Keys and going trout fishing to planning his funeral. I want this roller coaster ride to stop or at least to slow down a bit and have fewer twists and turns.