I was in the hospital for five days while they stabilized my Blood Glucose (BG). I think this was when I actually completed my DNR. My endocrinologist more or less insisted that I complete this in order to be released from the hospital. At the time, it made good sense, but in retrospect, it seems that I did it under duress. No harm, no foul—the order has been rescinded.
So I returned to the rehab center and progressed thru using a walker and then a cane. I still had a lot of balance issues but my muscles and coordination had returned to near-normal. It was such a relief to be so mobile again even if I did miss my hallway naps! I was released from rehab sometime around the end of May or the beginning of June. However, my medical issues were not yet over. I again started having problems with fatigue and eventually more problems keeping foods down. There were also more bouts of HE that were making me out of my mind again. I eventually My Transplant Journey Page 6 returned to the hospital and found out I also had an internal infection as the result of E-Coli. Where did that come from?! There was a major abscess along my spine in my back. They had put a PICC4 line in my right arm and eventually put a drain in my back. I was on some heavy duty IV antibiotics and draining a lot of fluids from the abscess. Eventually, sometime in June, they sent me home again but with the PICC line and drain still in place. Thankfully Scot, who has a personal aversion to needles, received training from my home nursing staff to administer a daily dose of antibiotics thru the PICC line, flush the lines afterwards and change the bandaging surrounding my drain. He also had to measure and empty the drain every morning. What a guy!!! After several visits to the interventional radiologists both the drain and the PICC lines were removed. That didn’t mean that I was done with the hospital! I was in and out throughout the summer. I remember watching the 4th of July fireworks from my hospital room. My hospital stay ended the day after my first granddaughter, Regan Louise, was born!!! 2007/09/10 - Right Inguinal Direct Hernia Repair I had been nursing a hernia during most, if not all, of my previous medical issues. By September I was actually stable enough that I could survive a relatively minor surgery to repair it. The relief was enormous and almost immediate. I also recovered quickly. I had had an umbilical hernia repaired years ago so my medical chart indicates that I am prone to hernias. Great! 2007/10/10 – First Appointment with Hepatologist I was still having issues with HE and controlling my diabetes. Scot took me to the appointment at what would become my transplant center: Froedtert Memorial Lutheran Hospital (FMLH)/Medical College of Wisconsin (MCW). I was using my cane walking through all the oh so long hallways. I started to feel my HE rising or my blood glucose levels going down. The end result was I couldn’t continue the walk and Scot had to go back to the hospital entrance and get a wheel chair. I’m so glad that Scot was there to help remember the things that the doctor and his Physician’s Assistant (PA) told us! I remember Josh, my PA, explaining that we needed to start a new regimen of drugs to treat all of my issues. The labs performed that day indicated that my BG levels were in the 500s and needed action almost immediately. I saw Josh in the morning and had the labs done. When we got home, I went straight to bed as I was still sleeping most of the time. Josh called and woke me up—I was really deeply asleep and having a real HE event. I finally got the gist of what Josh was saying: do some major control on my BG, make some changes in my diet to reduce sodium and protein levels and make sure to take my Enulose/Lactulose5 Within a few days with my new meds and better BG levels, I was feeling much better and anxious to start the process of actually getting a “new” liver! It turns out there is a lot involved in the process of actually getting a new liver. One of the first things that my Hepatologist and PA indicated was that I would have an actual team of people that would be involved in the process. Beyond my GI team would be a psychiatrist (PhD), Medical Social Worker (MSW-Ginny) and a whole host of other specialists to determine if my body was in good enough shape to endure the transplant. My psychiatrist assigned one of her graduate student interns (Andrea) to work with me. Angela and I met almost weekly, sometimes with her mentor, and worked through some of the things that were causing my | depression. She was also trying to ensure that my mental state and, more importantly, my sobriety were strong enough to endure the whole journey. I truly enjoyed my sessions with Angela! As a side note, 2+ years later, I still see one of the doctor’s interns but now only about every 6-8 weeks. I’m on my third intern, Lee, as both Angela and Jason have moved on to work on their own doctorates. Lee and I still work on my depression issues and it really helps—along with a little citalopram6 ;).
2007/11/12 - Cardio Echo, EKG There were really no significant events or results here. My blood pressure seemed to be normal, my A-fib was not present and, other than confirming that I had had a minor heart attack at some time in the past, my heart seemed to be normal. 2007/11/23 - Bone Density Test I was really surprised by the simplicity of this test—just lie on a table for about 5 minutes, no IV or anything! I didn’t really get the results until about 6 months after transplant when I finally added a Primary Care Physician (PCP) to my team at FMLH. She told me that I had osteoporosis7 affecting my lower spine and my T12 vertebra. We started a regimen of alendronate8. After 18 months on this drug, along with mega-doses of calcium/vitamin D, I realized an overall improvement of my bone mass and my classification changed to having osteopenia9. My research indicated that my abuse of alcohol was a contributing factor to my bone density issues. 2007/12/06 - Left/Right Cardio Catheterization10 I had thought that this was going to be a minor, quick, procedure. Guess what? I was wrong! It was really a daylong event and I needed monitoring at home through the next day. We had planned to go out to Christopher and Emily’s (daughter-in-law) to babysit Regan and were a little late. I couldn’t even hold her based on instructions from my team. Essentially this test requires a light anesthesia where I was a little bit out of it but still able to hear and see what was going on (Darn!). The doctors were able to do both sides of my heart through a single entry to my arteries located right at the top of my leg, basically in the “bend” where my leg joins my torso. Beyond the risk of passing the catheter through to my heart, there was a risk of bleeding at the catheter insertion site. Luckily I had no problems either with the procedure or with my heart. 2007/12/11 - CT Scan-Liver I had multiple CT scans throughout my journey, even post-transplant. This procedure requires the consumption of about what seems like a quart of Kool-Aid or Chrystal Lite laced with a dye material to help highlight areas for the scan. Additionally, there is an IV placed to get additional dye in place for the scan. The purpose of the scan is to determine the shape, size and condition of the liver and other organs. Post-surgery I developed a pain in my abdomen very close to where my beltline runs. To me it felt (and still does feel) like the pain I experience with both of my previous hernias. None of the CT scans or other tests (like upper and lower GI tests) have determined what the problem may be. At this point it appears to be just nerve issues related to how major surgery actually affects the body. We are treating this pain, along with my Diabetic Neuropathy11 (DN) and my tremors that have resulted as a side effect of my immunosuppressants, with Gabapentin12, which tends to numb nerve ends to reduce the pain sensation. 2008/01/04 - Pulmonology Test No real story here—just breathing a lot into tubes and hoses! I still don’t know any specific results from this testing but I must have “passed”. 2008/01/22 - Remaining teeth removed My teeth have always been problematic. I had numerous cavities, crowns and generally bad gums. By my mid-forties my teeth had rotted so much that my dentist and I decided to yank most of them and go with a full upper and partial lower denture. I’m sure that my heavy drinking contributed to my poor teeth, as I really didn’t care about proper dental care. I brushed but now I think it was more just to get the alcohol off my breath! I wasn’t real happy with the dentures as they were always uncomfortable and seemed to take away a lot of my sense of taste—then again, alcohol may have been the real culprit here. |