Don't Read While Eating

Just waiting to watch the leafs kick ass! (Ya, I know what you're saying, I could be waiting awhile. Very funny.) I thought I'd fill you in on how things are going. The stomach issue seems to be a lot better. They ran many tests and didn't see too much. They did see thickening of the intestines though. I personally think it's my CF getting worse in my digestive system. I've never had it too bad when it came to my stomach/pancreas luckily. I didn't need to take digestive enzymes, even though most CFers do and I've never really had issues with pain, diarrhea or gaining weight. I've now been taking enzymes at most meals and it seems to help. The pain is gone and I'm able to continue doing my PD dialysis. I had to stop for a couple weeks and switch to hemodialysis because they didn't know what was causing all the problems and they wanted to clean me out still. I eat a lot but I'm not gaining weight. I read on the internet that those with CF that don't require digestive enzymes are more prone to pancreatitis so that's what it could have been. I'm still going to have a colonoscopy to rule other things out and I want them to do a physical check on my pancreas just to make sure it's not something else, although I don't think it is. PD dialysis is going quite well. It's generally easy and not that intrusive in daily life. I just worry that it's not cleaning me out the same way hemo did because I felt the best when I was on that. I'm going to be have a PET test soon to measure the permeability of my peritoneal lining. That will tell us how well it's working. I've been really tired the last couple days and I was actually starting to feel more energy prior to this so who knows. I have a funny story which I'll share because, well, you gotta laugh at things sometimes. Jeff and I went to the Keg for dinner because tomorrow I can't eat anything solid so I wanted to fill myself up. Keep in mind that a few weeks prior I was suffering with vomiting relentlessly and I constantly had to scope out the washrooms wherever we went. Lately though, I've been fine. No nausea, no vomiting so I didn't really think about it and we were seated far from the washrooms. Midway through the appetizer I had to vomit. I had to make it to bathroom FAST! I grabbed the cloth napkin, covered my mouth and went for it. I barely made it but all seemed to be well after I...you know. I came back and seemed good to go so I dug right into my steak dinner. I felt pretty good but suddenly I didn't feel so good again. Normally after I puke once I'm good so I just figured it was because I wasn't that hungry. Suddenly I knew things were not good. I knew I wouldn't make it if I ran to the bathroom so I tried to use mental powers to calm my stomach (hahaha) but that didn't work so well. Just as the server was coming over to help us I barfed all over the place, spewing vomit all over the wall and the picture. It was so gross and embarrassing. The poor server. I'm sure he was thinking that he doesn't get paid enough for this. We tipped him generously lol. Jeff had to point to the top of his eye to tell me I had lettuce there lol. It was horrifyingly embarrassing but what can you do but laugh right? This is not the first time this had happened either, that's the worst part. Anyways, I appreciate those of you that read my posts and your comments. Love you all :)

PD in the PM

So I've started the process of peritoneal dialysis. I had initially wanted hemodialysis but my veins were too small to insert the fistula, although, I'm quite happy I had to go this route because I think it's much better. After my last post I had a couple hospital admissions. My creatinine was upwards of 600 something, I was drastically anemic (hemoglobin 59 at one point) and I required two different blood transfusions. They inserted my PD catheter quickly once I was a little more stable and started the dialysis as an emergency start, barely waiting a week for it to heal. Afterwards, I started the month long process of daily dialysis treatments at the hospital with one of those weeks being a training week so I could do it at home. I'm now officially home and it seems to be ok but now I'm dealing with a stomach issue that causes pain intermittently and I can't really eat. I'm going to get a scope and biopsy on Wednesday. They checked for a peritoneal infection and gall stones and it doesn't seem to be any of these things. It's really bothering me. I just want them to figure it out.

Kidney Failure and other things

Ok so time has passed and things have changed. I'm still struggling with kidney failure. My creatinine is now over 400 and the Dr. said I need to start the process of dialysis and eventually kidney transplant, so I see the vascular surgeon on August 12th. I'm tired a lot but I'll also have bouts of insomnia (like right now...it's 3:45 a.m.). I'm nauseous a lot and often vomit. My appetite is down quite a bit and I've lost weight. I also deal with lovely diarrhea (nice eh?). A year back, I switched my anti rejection medication from Cyclosporine to Prograf because they thought it was the Cyclosporine doing the damage. It obviously didn't make too much of a difference. My hair fell out quite a bit after starting it which sucks! I know it's 'just hair' but, as a woman, this can be tough. I've slowed it down by taking zinc and using a shampoo for cancer patients. I have nasal polyps which have completely blocked my sense of smell and therefore, my sense of taste. What else? I proceeded to go back to work a couple months back but now I'm not doing great again so I think I'll have to wait until I start the dialysis. I'm probably going on home hemodialysis. It suits my lifestyle since I don't leave the house much anyways and I work from home. But enough with the negative, I do have positive things too. My lung function is still amazing and no rejection or infection in the last 4 and half years (knock on wood). I'm still trying to golf when I can. I love it. I'm not great but I don't care, it's so nice to get out in the sunshine and quiet surroundings. I watch all the Blue Jays games and get right into it which always makes for a fun summer despite being inside a lot. Family, friends and especially hubby are all amazing and support me with endless love. I really notice my mental strength going into dialysis is somewhat stronger than I've been in the past. I guess that's what this whole journey does, unbeknownst to us sometimes. I always refute claims that I'm a hero and 'so strong'. I've always felt that it's just something I have to do and anyone else would do the same (which is true) but regardless, the process does inject a certain amount of fearlessness and bold face determination to fight! I really do look at it this time around as though I'm a warrior and my battle field is chronic illness. Bring it on motherf***ker!! If I lose, I lose with honour because I fought and I fought hard. My muscles are weak and yet I've never felt so tough. We all have our battles in life, physical, mental, societal, economical, etc. but perspective makes all the difference. I live by that. It can mean the difference between winning or losing, standing still or moving forward so always try to see the other side. Laugh as much as you can. Don't get me wrong, I know it can be tough, I deal with depression on an ongoing basis. That can be a battle in and of itself but I try to remember the word 'perspective' any time I sense the equivalent of a mental black hole coming on. Sometimes it helps and sometimes it doesn't but I know it's helped me many a times laugh at myself and the situation, even it's by no means funny. I find the humour anyway I can. I'm nervous about the process but I really just want to get the initial start-up over with and get into a routine. I hope it makes me feel better, which I'm sure it will. I'll try to update soon, Bye for now. My super duper awesome nephew Jack, My and my hubby Jeff on date night, Me supporting women's equality, Norman and my favourite picture of Jack.