The 300 Pound Gorilla in my house. I have not blogged about this before but may have hinted at it a bit. It is depressing so just feel free to pass this by.

In 1990 my husband had donated blood while in college. We got a notice from them that my husband was deferred. He had Hepatitis C. We didn't really understand the impact at the time and I am not sure we did anything about it at the time. I think we may have heard there really wasn't a cure or that is was only 50% effective at the time.

Fast forward 10 years to 1998. My husband had blood in his urine. We went to a urologist and they did surgery. They pushed us to go to a gastroenterologist about the Hep C so we did. He went and had a liver biopsy. Diagnosed with cirrhosis. They talked about varicies and wanted to do an endoscope and banding. Hubby declined that procedure. We went to the gastroenterologist to see about treatment for the Hep C. They told us the process and said they were now seeing about a 66% cure rate. Hubby decided that he didn't have time to devote to a year long treatment that would have meant weekly doc visits and lab work.

Let me add as an aside that my dh does not have the best oral hygiene. He goes to the dentist when there is a problem only which usually includes pain. I tried repeatedly to get him in to the dentist for cleanings. While having the other issues addressed they did tell him he had gum disease and would need planing and scaling. Let me tell you, this did not happen.

Along with this lovely issue my hubby has a bad right knee. Over the course of many years since the early 90's until nine he had 6 arthroscopic surgeries to fix meniscus tears. He got to the point where there was no meniscus left. He began courting orthopedic doctors to find one that would do a knee replacement on him since he was so young. A little over two years ago he found one and got his knee replacement. He was told he would need to get his teeth taken care of as the infection could spread to the joint. More unheeded advice.

Hubby made it almost a year in good shape. The knee felt great. He felt great. Good mobility. One day he hopped out of bed and looked down to see a very swollen knee. We went over and over in our minds as to what happened. We could find no good answer. My husband developed a lump on the side of his knee. He went to the family doc and he checked that bump. There was some dry skin there and the doc knocked it off while examining him to expose a sac that had formed. He sent dh straight to the hospital and put him on antibiotics. They cultured it but didn't find anything. The spot responded and went away.

Somehow the message was lost on dh that he needed to be seen by an infectious disease doctor. Long story short(er) the spot came back, we went to the infectious disease doc and they ordered surgery to have a port inserted in his chest. He was then placed on mega antiobiotics. Much of this runs together but the port was removed and the problem recurred.

Back to the ortho doc and he decided to open up the knee, remove the spacer and clean it out. Once that was done they put him on antibiotics to try to kill any infection there might be. The doctor didn't see anything in the joint to indicate infection. As a precaution we did the port again and the mega antibiotics. As soon as he was off our friendly little lump came back.

This time the infectious disease doc opened the wound and encouraged dh to keep it open so it could heal from inside out. They also placed him on an oral antibiotic to be taken daily for the rest of his life. They were suppressing the infection. This started late last year.

Last summer dh went to Baylor to work with the liver transplant team and go through the process of being placed on the list. He was given some things to address and he addressed those. In the meantime they monitored his MELD score and we watched it go up and down with each course of lab work. This score determines your placement on the list and how ill you are.

While going through all this dh was fired from his job. To tell you how bad he is he was declared disabled and now draws social security disability.

This past summer dh was driving and slammed on the brake. Not much longer after this the knee swelled again. Went to the ortho. Ortho told him he had osteolysis which means the bone was growing away from the knee replacement. He wanted to do another surgery but wanted dh to be cleared by the transplant team. We had not heard much from the team until this point except for the letter ordering tests and then the results letter. We went and met the new hepatologist. He had lab work just before we saw her. While we were sitting there she got his labs. His MELD was now a 20 and their sickest person was a 22. She had a lot of questions about his knee and the meds. We had been providing all these details as we are required to do. She told him he needed to get his teeth cleaned immediately to clear the infection. She presented his case and came back to tell us that he would need to have his right leg amputated above the knee since the infection could not be cleared. Both of these need to get him listed and get a liver.

I called our dentist and desparately begged them to take care of him. They did not have room in their schedule. They referred us to an endontist. I called and explained the situation to them. They said their computer was down and they could not help us for a few days until it was resolved. I got a call back almost immediately. The dentist said get him in the next day. We were there with bells on. They did their assessment but could not clean since they needed more info from the transplant team. We went back the next day and had half his mouth done. He has two more appointments and will be done on the 10th. He has to have two teeth pulled as well. Two weeks later the dentist will clear him of infection in his mouth.

We saw the vascular surgeon yesterday. We were resigned to the need for the amputation. Our orthopedic went to bat for us but the hepatologist didn't think we could wait (what have we been doing all this time?). He asked us for the history of the situation. We told him and he asked if we didn't think this was a bit extreme and that he didn't want to do it. We said yes we don't want to either. This doc is going to go to the transplant team and go to bat for us to see if they can try the alternative out orthopedic gave which was to take the hardware out, place a spacer, clear the infection. Get the transplant. Then when he was well enough redo the knee replacement.

I cannot tell you the stress I have been under. There is so much more to this story. I will share more as I know it. Not blogging this topic has kept me from blogging at all. I had to tell about it so I can get on with my blogging.

If you have read this far please collect your gold star! Thanks for listening.