Rick and I were able to spend some great quality time together in Las Vegas last week celebrating our 25th anniversary. So hard to believe it has already been 25 years. We went to Vegas not too long after we were married and it was fun to reminisce and see all of the dramatic changes that have transpired over 25 years. My feet are still trying to recover.Obviously we couldn't keep the kidney issue out of our mind, but we had fun with it. In the floor tiles of Caesar's Palace...WE FOUND A KIDNEY!"
I'm taking this as a good sign that all will somehow work out!
Trying to master the selfie at The Venetian in Las Vegas.
Just a bit of history so you know where we are at currently.
Some people that have PKD also have a a problem with intracranial aneurysms. This is the case for Rick. Six months after Rick and were married, he had an aneurysm rupture in his brain. We happened to be staying in Salt Lake City at the time it happened. Rick had a severe seizure and started vomiting violently. I knew something was terribly wrong. I helped him get dressed and he tried to walk to the car. He could barely walk. Still to this day, I do not know how I got him to the car. I don't know if I picked him up and carried him or if we had an angel that carried him, but I got him to the car and drove the wrong way up a one way street right to the hospital. I had just barely visited a good friend in the University of Utah Hospital a few weeks prior so knew how to get there.
Within just a few minutes of arriving in the Emergency Room, Rick flat-lined and I was asked to leave the room. A little while later a doctor came and told me that he had an aneurysm in his brain that had ruptured and he was being taken to surgery. They rate the condition of the patient as a (1) being good to a (5) being nearly dead. Rick was a 5 or beyond. Needless to say, my world came crashing down. As my memory reflects on the moment, it seems like a movie, A REALLY BAD HORROR movie. Rick was in surgery for nearly eight hours. When the doctor came to talk with me and family members that had arrived, he said he wasn't sure if Rick would make it through the night. He did make it through the night and was in a coma for nearly a month. During this time they found another aneurysm that hadn't ruptured yet and Rick went through another brain surgery two months later. Many, many miracles happened for us over the space of a few months and years. This occurred in 1990.
In 1993, Rick had another brain aneurysm rupture just a few months after his brother Faran had one rupture. This is when they started to test Rick for Poly Cystic Kidney Disease. They had found a link between PKD and intracranial aneurysms. Sure enough Rick had thousands of cysts in his kidneys and his liver. At this time they told us that Rick would need a transplant within ten to fifteen years. We are so grateful for the expertise and help of the doctors at the University of Utah. They have saved Rick's life many times.
This is not intended for anyone in particular. (wink wink) I just thought it was hilarious.
I think I need a shirt like this. :)
In 2008, Rick had a problem. He couldn't go to the bathroom. And of course he didn't tell me until it had been three or four days. We took him instantly to the hospital and they found what they thought was a tumor about the size of a small football in his pelvis. Well after many tests and a miracle that they didn't biopsy it, they found it was a large aneurysm. It was bulging through the sciatic nerve and through the spine. It was so large that multiples of Doctors would come into Rick's hospital room to feel the aneurysm through his buttock. (He was groped over and over) hehehe. It was quite rare to have an aneurysm that large and to be able to feel it from the outside was especially rare. They ended up fixing it by a process called Medical Thrombosis. This consisted of using metal coils placed through a catheter into the artery that had expanded. It looks like a twisted slinky. This forced the blood to clot. The aneurysm shrunk enough through the clotting that Rick was able to use the bathroom normal again During this time and through multiple scans, the doctor found another aneurysm. It was in the celiac artery. It was about the size of a half dollar. It is in a location that is very difficult to repair, so they determined to keep a close watch on it to see if it grew. We have had scans of both aneurysms at least every one to two years since 2008 with little changes to both of them.
We feel a little like this right now. Being tossed around and a bumpy ride. But I am sure it will help us appreciate the smooth road when it happens.
Well these little changes have added up. We had a visit with Rick's Vascular Surgeon last Tuesday. The aneurysm in the celiac artery has grown 10% since 2008 and the aneurysm in the pelvis has grown a centimeter in the last year and a half. They can not clear us for transplant. Because of the aneurysm clippings, Rick can not have an MRI, because of the kidney failure, Rick can not have CT scans with contrast because the dye will progress the renal failure. They did a scan without the dye and of course cannot see what they need to see. So it is sounding like Rick will be forced into dialysis to be able to have scans, even to know how to repair the aneurysm in the the celiac artery and the one in the pelvis.
Yesterday, we met with the Neurosurgeon and again the same story, they can't clear Rick for a transplant. They can not see if problems exist in the arteries of the brain without using the dye. So now we wait as all the doctors collaborate ...concur....( I love the word concur, mostly from the movie Catch me if you can) and decide what to do. We should know within the next week hopefully.
Kinda like stuck between a rock and a hard place.
Rick is so very patient and doesn't let things get to him, but a little bit of discouragement has settled in. He was so very much hoping he wouldn't have to do dialysis. So please, keep him in your prayers. We will push forward, having faith and hope. We know that we are not alone in this adventure. Thank you for sharing in our journey. It is time to adjust the sails.
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