Friday was worse 🙁
Jamey meets with his dialysis nurses and nephrologist every two weeks. Yesterday was a doctor day. Unfortunately, we had a very chaotic day and I was unable to secure a sitter for the appointment. I ended up sitting in the car with the girls while Jamey was at his appointment (hour and a half). Then when he came out I ran in to chat with the nurses. When I looked at Peggy and her eyes teared up I said a bad word. Followed closely by another bad word. Not one of my finest moments.
We’ve noticed that Jamey is starting to get tiny little sores on his head, torso, and legs. Dr. Fish confirmed that these are due to renal failure. DO NOT Google this. What he has going on is NOTHING like the HORRIBLE Google images. Based on this new development and his recent blood tests it was determined that peritoneal dialysis not doing its job.
When we began Peritoneal Dialysis (PD) back in January it was working. Back in January, Jamey still had 14% function or so. His numbers were moving in a good direction. The last couple months we’ve watched a steady decline in his health. Creatinine going up. Hemoglobin going down. Zero energy. Zero appetite. Every couple weeks things were changed trying to fix the issues: Phosphorus binders, blood pressure meds, dialysis prescription. In January, Jamey did 8 hours an evening of dialysis. A couple months ago it was upped to 10 hours. A couple weeks ago we added a manual bag and the time changed to 12-14 hours. After meeting yesterday he is now at about 18 hours of dialysis a day. He does a manual fill around 6pm and disconnects. This process takes about 30 minutes. Then he connects to the cycler around 9 or 10pm and drains the manual fill from earlier. After the drain, the cycler will fill/drain him 4 times over the next 10 hours. It used to be that the cycler drained him so when he got out of bed he was empty. Now the cycler fills him one last time. He can disconnect and move around with the Dialysate in him — but he must find a sterile environment to drain about 4 hours later. (So far he’s only ever done the drains in our bedroom.)
Note to nurse friends: His creatinine is pretty high and his hemoglobin is quite low. He is getting massive Epogen injections twice a week. Yes, transfusions have been discussed. This is not an easy option for us and the doctors say they will exhaust every other option before doing a transfusion. Jamey currently has 0 antibodies. This makes it easier for him to find a donor match. If he gets a transfusion he will most certainly have antibodies. We want to avoid that.
Other options: Jamey has until July 1st to see if the new PD prescription and Epo injections make a difference. His doctor said he will not let him get any sicker. If the changes do not help, the next step is hemodialysis. Hemo can be a little bit harder on your body. One of the reasons we originally went with PD was because hemo requires him to be at a dialysis center every other day for at least 4 hours. That doesn’t really work well for a guy that is young and still working/traveling. He also still had some kidney function and studies had shown that PD would help him retain the function he had a bit longer than hemo would. And finally, hemo patients can have more ups and downs since they are only receiving therapy every other day. When your kidneys stop working you stop urinating and start retaining fluid. When you do PD and hemo the extra fluid is removed. PD removes the fluid every night. Since hemo isn’t every day — sometimes you are removing quite a bit of fluid at once. This can be hard on your body.
When we made the decision to do PD instead of hemo all of the circumstances were different. He was healthier. He was only doing PD for 8 hours at night. Now that he is up to roughly 18 hours/day – hemo may not be such a bad option. Hemo may be our only option if we don’t see an improvement soon.
Hemodialysis patients usually have a surgery to give them a fistula. Dr. Fish and the PD Nurses all advised that Jamey would not be getting a fistula – yet. We know we have another donor up to bat for us immediately. We are avoiding the fistula surgery in the hopes that this new donor will be a match and we can move forward with a transplant. Of course, if this donor is not a match we will revisit the fistula discussion again. For now, if hemo is needed (determined by 7/1), Jamey will get a temporary catheter in his neck area.
The good news he received is that his nutrition actually looks pretty good! This one I find very hard to believe because he isn’t eating much and what he is eating is mass quantities of Honey Nut Cheerios 😛
Recap. Jamey is very sick. Although peritoneal dialysis was great in the beginning, Jamey’s kidney function has significantly declined and it isn’t working anymore. His dialysis team made some changes to his prescription on Friday. He will be rechecked on July 1. If his Nephrologist isn’t happy with the results he will be switching to hemodialysis. Apparently Honey Nut Cheerios do your body good?? 🙂
How are we? This is hard. We were dealt a pretty big blow when Ken found out he couldn’t be a donor for a year. To have all of this new news hit us less than 24 hours later was just devastating. Jamey seems to be trucking along. He is tired of course. I notice that his morale is a bit lower in the evenings and a bit better in the mornings. He is still working and even traveling when he is needed. Remember, Candus (is a rockstar) helps get all of his supplies wherever he needs to be. 🙂 I teeter between being a crying mess and feeling like Wonder Woman ready to kick butt and take names. 🙂 The girls are involved in lots of summer activities. They just finished up a week of VBS at St. Francis.
Hannah has started gymnastics and goes to a reading class twice a week.
Abby is still riding and is also attending a cantering/jumping camp.
We aren’t letting the girls in on all of the up and down parts. They of course know that Jamey is sick and needs a kidney. They see dialysis at home. They know that without a kidney he could die. We think this is about all they need know. We think it is enough that a 7 and 9 year old even have to understand that much. We pray that we can wake up one morning this summer and tell them it is Daddy’s surgery day.
We don’t have any big plans this summer. Jamey’s health is too unpredictable at this time. If we find we are able to take any quick get aways we will probably just drive so we can take any supplies he may need with us.
As always we thank you for your prayers and well wishes. We still need a donor. The more people we can get in line ready to be tested the better. If you are type O and interested in learning more, please call Kathryn O’Dea, RN, 720-754-2164.