That Which Does Not Kill Us Makes Us Stronger

Hi everyone,

My apologies for the radio silence coming from this blog the past couple weeks. In the past when we have put together these weekly blog entries, I write and my son in his role as blog editor helps to make sure the entries are not too long and that they stay on track. But this week he said to do some stream of consciousness writing. So pull up a chair and maybe a coffee as I fill you all in on the last last two and half weeks of this journey. 

The best place to start this story is three days after surgery. After a very successful kidney transplant, Ken experienced burning and chest pains while at his clinic appointment later that week. He was sent directly to the ER, and an EKG was performed which was normal. Ken was also complaining about being winded from simple tasks like walking to the bathroom. They kept him on a "hard" emergency room bed for about 8 hours ruling out a heart attack, and eventually sending him home. Each day after that Ken seemed to tire very easily and was definitely out of breath after the simplest of tasks. He related this to his nurse and to all the staff at his next clinic visit the following week. They all told him he was only 2 weeks out of major surgery and at 62 years old his body was healing slower than a younger man's body would. During these days he lost about 20 lbs which they said was normal for a dialysis patient. I just had this feeling something wasn't right though. On Monday September 24, Ken and I took a nice walk in the neighborhood, his first time being outside. It was great and when we got back Ken complained of a pain in his groin.  He figured he pulled something. When his nurse called to check in and change medicines Ken told him about the pain. He said if it got worse or moved upward to go to the ER.  On Tuesday Ken was moving slower, more winded and just not looking or feeling good. He was anxious to go to clinic the next day and find out where the pain in his leg was coming from. That night Ken decided to sleep on his recliner because it was the only way he could get comfortable. I slept next to him on the sofa. As I lay there that night, I kept thinking about how Ken would almost pass out when he stood up. He kept thinking his pressure was low. I was really concerned. I was trying to figure out how I was going to get him to clinic the next day. He was in pain, could hardly walk and was so light headed. Earlier that day, I had called my neighbor across the street and he had brought me a wheelchair to use. I kept thinking about how shocked he was when he saw Ken. The weight loss was that evident. 

Ready to get back home!

Ken went to sleep around 10:30pm and I worried myself to sleep around 11:30pm. I woke up at midnight to a bright light. I was so confused trying to figure out where I was. Where did that light come from and where did it go? I went to the bathroom and heard Ken. I came back and asked him if he was OK and I got a weak yes. A few minutes later he was calling my name and I could hear the fear in his voice. He asked me to feel his leg. When I touched his calf, it was as hard as a rock and it felt warm. When I put on the light, I was shocked at the size of his leg. He looked at me and said we have got to go to the ER. I think I have a blood clot. I was terrified. I called 911 and ran around the house packing his medicines, his kidney transplant record book, and anything else I knew that was important. The ambulance arrived in about 10 minutes and we were off to the ER. The medical staff was great. He was evaluated and they contacted the transplant team. They gave him medicine for pain. His right leg was twice the size of his left. They sent him to ultrasound and I got to watch as the doctor took picture after picture of his right leg. After 30 minutes, he told Ken he had a sizable clot that started at his groin and went all the way down to his calf. He did an ultrasound of the renal artery and that beautiful new  kidney. It was GREAT news. The kidney was functioning normally and no clots had invaded the kidney. They started him immediately on blood thinning medicines and told us he would be admitted. I was thrilled because this is where he needed to be to get the right level of care.We arrived in the ER around 12:45am and at 7:00am they moved him to a holding area for the ER while he waited to be admitted to the transplant floor.  Now this is when and where the problems began. He was left alone for long periods of time. Apparently blood work was suppose to be done every 6 hours to check levels of meds in his blood. Those were not done. Thank God I brought all his anti rejection drugs for his kidney because these meds have to be taken at a certain time each day morning and night. I gave him his meds in the morning. I measured his intake and output of fluids and recorded it. I basically was his nurse. He was able to sleep since that did not happen the previous night. After a horrendous amount of time (19 hours to be exact!!), he was admitted to the transplant floor. We were back with an amazing medical staff that knew exactly how to treat Ken's condition. Ken still was in considerable pain and was on strict bed rest. Everyone who came into the room and saw his leg were amazed. The popular description was "quite an impressive clot!"  The following day a VQ scan of his lungs was ordered. The doctors were concerned about his being winded. I had a feeling there were clots in his lung and the test results showed that. Each day the doctors would tell him it is a slow recovery process and the pain will eventually get better. As I sit here today - day 7 in the hospital his pain is almost gone. The swelling has gone down considerably. The doctors are still trying to get his Coumadin levels at what they call therapeutic to send him home. PT came in today with a cane to give him a little more stability when walking temporarily. He walked the hallway for the first time in 6 days and was a little winded. Ken and I can finally see the light at the end of the tunnel! I took that picture of a smiling Ken last night as this long hospital stay is coming to an end.

Being a teacher, I always ask the question what can be learned from this experience. First and foremost, you need to be so aware of your body. After any major surgery you need to know blood clots are a risk. No matter what, always ask questions and continue to ask until you get answers (and hopefully consensus on those answers).  And if possible, every time you go to the hospital have a loved one with you to listen and ask questions too. Secondly, medicine and medical treatments have changed so much in my lifetime. The technology that is available today is quite amazing and can save more lives than ever before. I do worry though about Emergency Room medicine and the competence of some medical personnel in that area. This is the first response to a patient in a crisis situation. It is vital that the staff is able to evaluate and treat each patient properly. The system seems flawed and our experiences at the ER this past month were both scary and unnerving, two words that should not be part of any patient experience. And finally I am reminded of the power of prayer, love and support from all of you. Ken and I have appreciated all of your words of encouragement and know how lucky we are to have all of you. God has walked beside us each step of the way. We thank Him and praise Him for all the blessings He gives us. And I would be remiss in not mentioning our most special blessing, Alex's selfless gift of a kidney, which today is working just the way it should be, beautifully.

Until the next time may the Lord carry us on our journey,

Pat