Tuesday, February 26, 2013

From A Hospital To Commander’s Palace…

First, let me wish you all a belated but Happy New Year. I hope everyone had a wonderful holidays with family and are off to a great start this year. I know it has been quite some time since my last post. And so as I sat in the hospital over the last week with Ken, I decided it was time to bring all of you up to speed on the past couple months and tell you the latest story of our continuing journey:  This story begins over the holidays when Ken started having problems with his foot, horrible pain that had him hobbling around. It lasted a few weeks, but finally it got better. Remember with Ken’s suppressed immune system a simple cold can turn into pneumonia so every pain, cut, cough, and cold has to be taken care of immediately.  As the new year started, Ken just did not feel well. He was still fighting a lingering cough, headaches and high blood pressure. One morning he woke up complaining of chest and neck pain. I was ready to head to the ER, but Ken was told to go get blood work done and a chest x-ray.  Do you know when you get that feeling that something is wrong? Well I got it as we were waiting to be called in for the x-ray. Later that afternoon the doctor called and told us to head to the ER.  The X-ray was normal. It was not his lungs  but maybe his heart. They took an EKG and the cardiologist came in and before I knew it they were running with him down the hall. By the time they got in the room, three doctors and 4 nurses were working on him. It felt like an episode of the television show ER. The cardiologist started asking him questions and getting him to sit up and breath in and then bend over and breath in. Ken had no pain when he was bending forward. The doctor told the nurses to stop. He was not having a heart attack but had pericarditis – an inflammation of the lining of the heart. He was in the hospital for 5 days. They gave him powerful antibiotics intravenously. Ran all sorts of tests, one of which found a spot on his lung which was a big worry and concern for us. After 5 days, they sent Ken home on an oral antibiotic that had significant side effects. Well, if it was a side effect, Ken seemed to experience it. He had phlebitis in one arm from the IV. Then he started getting a painful swelling in his other arm and on the bridge of his nose and on the back of his heel. The doctors finally took him off of the antibiotic, but the damage had already been done.  He was followed up then by a pulmonary doctor who decided the spot on his lung was from the blood clots he had in his lungs back in October shortly after the surgery. He put him through a series of breathing tests and he passed with flying colors. But he still did not feel good. His blood work started showing that something was going on with the new kidney.  On Friday February 15, Ken was admitted to the hospital again, put back on the transplant floor getting medicine intravenously to drop the level of Coumadin low enough to safely have another kidney biopsy on that Monday, the 18th. The doctors assured us that whatever the diagnosis there was medicine to treat the problem.  This is where the emotional roller coaster started again.  The consensus among the staff was that the original kidney disease that caused his kidneys to fail in the first place was back in the new kidney.  It was so scary thinking about that.  We prayed so hard this would not be the case. The doctors reassured us that there was medicine to treat it; however, medicine that had serious side effects.  The second possibility was the virus he has been battling since shortly after the transplant – known as the BK virus – was in the new kidney.  Again there was medicine to treat that which also had serious side effects.  Then there was a third possibility – the kidney was rejecting.  There are two types of rejections – acute and chronic.  Obviously the acute is easier to treat and can be stopped whereas the chronic can be treated but the results are not as good.  That weekend before the biopsy was one filled with worry, fear, and uncertainty. So we did what we knew best, what has comforted us the most in our lives, prayed and put our fears into God’s hands. Ken and I received information from our friend Charlotte about people from Blessed Father Seelos shrine that come to the hospital and pray with the patients.  We immediately called and a gentleman came.  He prayed with us and talked to us.  Ken held the cross on his kidney and prayed.  It was so comforting and emotional for both of us.  The next morning the biopsy was done.  The results would not be available for 36 hours.  The waiting was hard and the doctors still felt like it was the original kidney disease attacking his new kidney.  Finally the morning came and the doctor told us it was not the original kidney disease.  I was ready to dance and shout but that didn’t last long because the next words were we still don’t know what it is so they are testing more.  We waited again praying that God would continue to hold our hands on this journey.  Results came in – no BK virus was found.  Now I really wanted to dance, but they still didn’t have an answer. So another test would be performed.  Finally on Friday, the doctors told us that the kidney was experiencing a mild acute rejection.  It would be treated with infusions of steroids combined with a change in his medicine regimen. A sigh of relief, a look to the heavens, and a prayer of thankfulness and praise to God!!!!!

Ken, Pat, Kelly, and our amazing donor Alex

So we are finally home after 8 days in the hospital.  Ken will have another biopsy in 2 weeks to make sure the kidney is not rejecting and the medicines are working.  He will continue to have challenges with the effects of the infusions, but we are determined to enjoy each and every moment. We are looking forward to spending more time with family and friends. Just one day out of the hospital, and Ken and I were eating Sunday brunch at Commander’s Palace with Kelly and Alex (see picture above). We have learned that the bumps in the road continue but with God holding our hands we are safe. We also know that we are surrounded by an army of amazing friends and family who keep praying for us and following this blog. Your support and love continues to carry us through every obstacle and challenge on this road to recovery.  Until next time may the Lord carry us on our journey, Pat


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s