Hospital Part 2

The hospital this time actually admitted James pretty quickly and he was on the Telemetry ward by 10:00 PM. That was nice because I got to go home and get some sleep. I needed it because that night started the hardest 2 weeks of my life.
The telemetry ward is a step-down from ICU. It also meant he was on a constant heart monitor. The first room we were in was a shared room and he was by the window. Our doctor was a young woman who was a general rotating doctor. We will call her Dr. Y. Dr. Y seemed to be a relatively young doctor. It seemed to me that she was maybe even still a resident, but I cannot say that for sure. Here is what I can say, though, James was definitely her first PKD patient. I know that because I had to tell her about his disease.
Just because he got admitted did not mean he was getting better. In fact, he was getting worse. The internist I have discussed before, started James on some antibiotics. It was a broad range antibiotic because he thought that CIPRO wasn't going to work. This turned out to be a horrible calculation. One of the difficult things about PKD is that it is very hard for antibiotics to reach into the cysts. CIPRO is one of the only antibiotics that has been proven to really get in there. It is the most widely prescribed antibiotic for PKD patients.
James was on these other antibiotics for a week. During that time, James got worse day after day. His nausea was uncontrollable. His kidney function got worse every day. His white cell count started skyrocketing, and his temperature was reaching 104.  His fevers were so bad that he was constantly shivering, then he got Tylenol, and then sweating profusely. He did this 24 hours a day and so he wasn't sleeping or eating. It was horrible. However, everyday, Dr. Y would come in and tell me he was getting better, that the antibiotics were working and his lab work wasn't reflecting it yet.
I started feeling absolutely helpless. I tried several times to tell Dr. Y how badly he was doing, but she stopped listening to me. She soon found out my schedule and would come to see James before I came in or when I wasn't in his room.
My family would call me every day and ask how he was doing and I would just cry and say he was getting worse. I didn't know what to do. No one was listening to me and I started doubting myself. I started believing that I wasn't strong enough to help him, no matter what I did. So I just held his puke bucket and let him whither away. The strange thing was that even though he was so bad, Dr. Y really did think he was doing better, so she took him off the heart monitor and sent him down to the regular recovery ward, where patients get checked just a couple times a day. Unbelievable.
No, here's what was unbelievable, I actually left him to go to work after he had been in the hospital about 5 days. I never should have done that and I have learned my lesson, because while I was gone, his heart rate spiked. It got up to 250 and James says that 12 people rushed the room with the crash cart ready to resuscitate him. He says he was glad I wasn't there because he knew that would have scared the life out of me. It might just have.
I was finishing up my route at the post office when he called begging me to get back. They had moved him back upstairs to telemetry and back onto a heart monitor. My work was an hour and a half from the hospital and I had a total meltdown on the way back. I was screaming and crying in the car. I finally called my mother-in-law. She is a nurse and a PKD patient. I had been trying to leave her out of it because they were on vacation in Ohio and I didn't want to ruin their trip. However, James had almost died, again, and I couldn't do it by myself anymore. I told her what happened and I begged her to get on a flight and get to California as soon as she could.
Bless her heart, she spent the whole next day on airplanes and finally made it by about 7:00 pm. Just having her there was a breath of fresh air. I knew that she could get James better and I was absolutely right.

Hospital Part 1

The lump on his stomach was very concerning. He was really scared by it because it wasn't just a lump, it was painful to the touch. We had an idea of what it was and so the next day he decided to go back to the ER again.
This time they called in an internist to look at him. They finally took a CT scan and ran blood and cultures. Finally, his creatinen level caught up to what was going on because it was over 3.0, which is very high. When the scans came back, the doctor showed us that his kidneys had basically ballooned and were so large that they now were pushing up to his abdomen wall. He had also become septic now, which means that he had an infection that had spread to his blood and that can be very dangerous.
Here is what really happened. James had been labeled a "baby" by the doctors and by his work (which I won't get into because that is a whole different issue. Suffice it to say, they got really sick of him complaining). Even though he tried to tell people about how sick he was, he was ignored. He had an infection that probably started in his kidney, but slowly, day after day, month after month, spread throughout his body. This infection caused him all his symptoms and also allowed his kidneys to grow at a rapid rate. I truly believe that he was just a few days away from dying if that internist hadn't finally believed him and done something about it.

Leading up to Hospitalization

James started having frequent fevers and I think it is important to point this out, because no doctors we went to saw this as a problem. Many doctors didn't believe he was even having fevers because he would mask them with tylenol and they would go away while we were at the doctor's offices. However, at home, he would chill and then sweat, repeatedly, all day long.
He tried going to the ER in April and was released in a few hours. Again, I want to point this out because one major problem with PKD, which we learned in the hospital, is that they can't get bacteria to grow in a petri dish. So, on an ordinary ER visit, they found nothing wrong, pumped him full of fluids and tylenol and sent him home. 
He became very sick in June, 2010. By this time his nausea became so bad that he was throwing up in the parking lot at work or pulling off on the side of the road. He was having consistant fevers, and ever increasing pain. I can't imagine the pain he must have felt. Did I mention that his kidneys are each now 3 times the size of a normal kidney?
The series of events here are what baffle me.
By the middle of June, James could barely walk from pain and sickness. We saw a new nephrologist on a Thursday. He couldn't even sit up while at her office. We told her he was having fevers and she said, "That would happen because of the pain you are in." WHAT?! Has anyone ever heard of that? Fevers caused by pain? What are fevers? They are an indication of infection. What is pain? It can be an indication of infection. What did James have? A serious infection.
Two days later, on Saturday, I was at work and again James called me to say he was going to the hospital. Some church friends took him and by the time I showed up, they were ready to release him again. They took his temperature, which was high, and gave him some tylenol, fluids, and nausea medicine. I don't think they even ran a blood test.
I shouldn't have taken him home. I know that now. I guess I thought that doctors should know something, but when it comes to PKD, unfortunately, they don't. I can't tell you how many times doctors and nurses say, "So, he has kidney stones?" Like that is the only thing that can go wrong in a kidney.
So, I took him home. I hoped he would get better. I prayed that he would get better, but by Sunday night, he now had a new symptom. We were laying in bed, ready to go to sleep. Well, I was ready to go to sleep. James couldn't sleep anymore. He just paced and then threw up, and then paced some more. He put my hand on his stomach, similar to when I was pregnant and I put his hand on my belly to feel a kick. I felt something hard. If I didn't know better, I would have thought it was a foot because it was long and rock hard, on the front/side of his body.

Our Story (So Far)

We have known for a long time that my husband, has PKD. That is a genetic disorder that causes cysts to grow all over the kidneys and liver. He has had high blood pressure for a long time. He also says he has "thirsty" kidneys. They cannot get enough fluids.
As of 2009, we were living in Central California in a beautiful house in the hills of Patterson. It's a small community with wonderful people. My husband was commuting to San Jose everyday for his job. I was also working part-time for the Patterson Post Office as a carrier. We had a beautiful baby boy that year and our two girls, 6 and 5, were in school and thriving. I was enjoying just living day to day and taking care of my family.

In September of that year, James had his first hospitalization. He was at work and his kidneys were bleeding so much that his urine was black.  He called me on the way to the hospital so I could meet him there. One of his cysts had burst, which is something that can happen with cystic kidneys. It also caused an infection in his body. They were able to get the infection under control and he was released after a week. Unfortunately the infection came back and he was in the hospital a week later.  After another week, he was released.

I guess you could say that that was the beginning of the end because he was never the same. He had been commuting for two years, but his kidneys were now so enlarged that he started having pain. Driving for 3 hours a day started taking a toll on him. He was exhausted at work and his work performance started going down. The problem became that his lab work didn't show any decline in kidney function, but his overall general health continued to spiral downward, and his pain started to increase.

I will continue my story later. I have a baby to take care of.  Thank you for taking an interest in us.

Three Generations of PKD

I've decided to start this blog to tell our story of Polycystic Kidney Disease. I am in the middle of three generations of this horrible disease. My mother-in-law found out in her late 30's that she had PKD. She had a transplant and is doing well. My husband, 31, is now suffering with enormous kidneys, pain, and the effects of stage 4 kidney failure. Plus we now know that my seven year old daughter also has this disease.

I would love anyone to comment or email me at stevenssurvivingpkd@gmail.com.