Originally published November 25, 2015
To say we were blindsided by this diagnosis is an understatement. Paul had been having some body cramps and dizzy spells for quite a while, but he was convinced that it was something related to damaged nerves in his back. He is a mechanic and doesn't know the meaning of the word stop, or relax, so he was always pushing his body.
Early in November he had a very bad weekend with almost constant cramping. Not little short cramps but cramps that ran all the way down his right side- hand, arm, abdomen, hip, leg, foot...so bad that he was nearly in tears several times. Anyone who knows Paul knows that he doesn't show weakness and will work through most any pain.
Originally published November 26, 2015
Paul and I can't begin to thank everyone enough for their support at this time. Despite the diagnosis and all the changes we're facing in our lives, we are still very thankful today.
We have amazing family members near and far. We have supportive and helpful friends. We have great kids. We have each other. There are others out there who are in worse shape than we are and while we will spend today basking in the glow of loving family there are many who won't have that opportunity.
So while we are going to have a very Happy Thanksgiving our hearts and our prayers go out to those who don't have all that they need and who don't have the love and support that everyone deserves.
Originally published November 27, 2015
As someone who has never had to deal with this kind of illness, the many terms and options concerning Paul's health and treatment have been a real eye opener. As you read our posts you may see some things that seem confusing so I thought I'd put them all here for everyone so that you are all in the loop and know what we are talking about.
The first few things we are concerned about on a daily basis are the levels of certain things in Paul's blood. While we don't get blood work done every day the things he eats and drinks are how we can work from home to maintain control of these numbers in between dialysis appointments.
Originally published on November 28, 2015
Paul has officially completed his first week of in-center dialysis. Despite having 3 short treatments at the hospital before this, the first visit to the center was all new to us.
We walked in, unsure of what to expect and were greeted by the cheeriest, friendliest people imaginable. Everyone from the other patients to the nurses and other professionals were helpful and able to answer our questions, offer advice and overall make us feel a little better about the situation
Originally published November 29, 2015
When Paul was released from the hospital the first time, on November 11, 2015 I was a woman on a mission. I made phone calls, I printed forms, I collected and collated information. I did everything I could think of to relieve his financial worries about knowing he would be out of work. I was proud of myself for thinking of different ways that would help us out financially, like calling the electric company and asking if they have any sort of program for serious medical condition patients... they do!
So, suddenly I had a folder full of forms that needed to be filled out. I could have done it no problem. I did fill out all the parts we were responsible for and had Paul sign where he had to sign. But we also needed physicians to fill out certain forms.
Originally published November 30, 2015
In many ways this month has flown by. With two hospitalizations, diagnosis, starting dialysis and learning about this disease we've been overwhelmed almost from the beginning of the month.
In some ways it has been a relief to have a culprit, a reason for the awful cramps, weakness, dizziness, fainting, and tiredness that Paul has been dealing with. Shocking in many areas to discover that there are symptoms that we never thought of as being symptoms of anything like his hair becoming brittle and tangled and itchy skin. So now we have a disease to blame and we are learning more about it every day.
Originally published on December 1, 2015
All that paperwork is finally going through and there is an official status now of Paul being on medical leave from work. Of course that doesn't put any money into our budget but will help the process of his application for short term disability through work once the waiting period is up. I've already got the application in, we just have to wait.
Paul's doctor has said that he's pretty much looking at not being able to go back to work as a mechanic until he gets a transplant, but luckily he's got computer skills to fall back on- and now has the chance, when finances make it possible, to get some certifications and possibly a new, very part time career. We're not looking too far in the future just yet, we still have to deal with the surgery to put in the peritoneal catheter so that he can do home dialysis while we wait for March for his transplant evaluation.
Originally published December 6,2015
Paul has finished his 2nd full week of in-center dialysis. He struggled this week with low blood pressure while on the machine. This tends to cause the side effects to be a little bit worse. He had 2 evenings of being very weak, some leg pain and head crushing headaches. This is all part of the treatment and to be expected, but it is very hard for a control freak like me to not panic and try to come up with ways to raise his blood pressure so he won't suffer as much. Unfortunately there's nothing I can do there. So we just struggle through.
Originally published December,
I know it can be difficult to decide to donate to this or that fundraiser. You wonder where the money will go, are the people really in need or whether you're giving your hard earned dollars to someone who will blow it on frivolous spending? I suppose in this case it would help to know what we are facing and what our plans are.
Since Paul's diagnosis he has been unable to work. He's been hospitalized twice, is on 3x per week dialysis treatment and is basically waiting for the medical team to get it together to have surgery to put in his PD catheter so he can begin dialysis at home. We have applied for his short term disability through work and social security disability, there is just the matter of waiting for things to be approved and income to begin coming in.
Originally published December 9, 2015
After a restless night where I didn't get a lot of sleep I wasn't really looking forward to today. Then things started happening to change my outlook completely.
First I was finally able to connect with the Home Dialysis team and get Paul's appointment with them scheduled for next Tuesday. This is the first step in getting a peritoneal catheter which will have to heal for several (I think 8) weeks before it can be used. But any step is a good one at this point. The heart catheter he has is meant to be temporary and we'll be so glad to get rid of it.
Paul and Suzanne McKoy''s journey with kidney disease and Home PD. These blog posts have been pulled from the original "All for Paul" website and blog that we used to keep friends and family updated while we were going through this process prior to Paul's transplant on April, 13, 2017.