Another Day, Another Procedure and a Whole Bunch of Feelings

 

Another day spent at Portsmouth Hospital with Mike. Today he had a Fistulagram also known as a Fistulography. It’s an imaging test where they insert a needle and dye and do some imaging to make sure the fistula in his arm is working properly before they can remove the Central Venous Catheter (CVC) which he has had since February. Since Mike has stage 5 kidney disease, this Fistula is a life line for dialysis. He did well during the procedure, even though there was a lot of pressure and discomfort. The test showed that he had scar tissue built up from a previous antibiotic picc line, so they had to open it up with a balloon. He was in the operating room for about an hour and in recovery for another hour. Starting Tuesday, the nurse’s at the dialysis center will try using the arm Fistula for the next 3 sessions. Once it is proven to be working properly, an appointment will be scheduled to get the CVC removed from his chest. He can’t wait to get rid of that thing.

 Another update is that he had a follow up visit with his cardiologist on Monday to discuss the stent that he had placed 5 weeks ago. The reason he had the cardiac catheterization to begin with was to clear him to get back surgery for the 2 vertebrae that fractured, back in January. Unfortunately, because the catheterization showed a 95% blockage and a stent was placed, he is now on Plavix (a blood thinner) and has to remain on it for no less than 6 months. Because of the need for the Plavix, his back surgery cannot happen anytime soon. He will have another appointment with his cardiologist in December and will hopefully be able at that point to get off the Plavix for a week or two so that he can have the much needed surgery. The other disappointing news is that he was supposed to get re-evaluated in January to be put on the kidney transplant list. Last January he was denied because of his critical state and because they will not consider it until his back is fixed. What this means is, he will not go through the evaluation process which is scheduled for January 2026, it will have to be postponed until the back surgery is complete.

We continue to keep the faith and trust God’s plan for us, but I’d be lying if I said these set backs don’t cause discouragement for both of us. Every setback causes a ripple effect: the procedure he needed gets postponed, other appointments get pushed back and the list of things waiting for him just keeps growing. Not to mention the chronic pain he is in. It feels like we are constantly rearranging life around his health, never really getting a break and never moving forward the way we have hoped.

We truly are grateful for so many wonderful blessings we have had in all this chaos, but lately I’m really feeling overwhelmed. Everyday feels like a balancing act. Dialysis alone is a challenge (for him), getting him to and from the appointments consistently has become harder and harder and the weight of trying to coordinate it all, falls mostly on me. He has called 12 (yes 12) different organizations for help with transportation, but none of them service Danville, where we live. Two of our drivers have had their own medical issues and have had to stop driving him indefinitely (please pray for these friends), another has committed to Thursday mornings, but is really hoping somebody can do alternate weeks so he doesn’t have to commit to every Thursday, (It is a lot). On top of all this, school is starting up again which means the hours at both of my jobs will increase. My Saturdays consist of me taking him to dialysis, grocery shopping, any other errands, and picking him up, plus biweekly, I take care of my 87 year old stepfather, so I take him with me. 

I’ve been looking for someone to tear down our porch overhang because it’s dangerous, have a new one built and have someone assemble the wheelchair platforms and ramp in preparation of the wheelchair that is inevitably coming soon. Hoping to get this done asap, especially before winter. The problem is a a few people I have contacted for an estimate, either have not gotten back to me or have blown me off. Our budget for this project is very minimal because the majority of the money raised for us, went to getting our much needed new roof. As for the inside of the house, I have been trying all summer to get a few projects done in preparation for the coming wheelchair. I feel like I’ve become the Jill of all trades. With all this going on, our road has been torn up for months because a new water system is being put in, however, every few days, these workers seem to break a waterline, which leaves us for hours or a day or two with no water, which backs up chores inside the house. Then because of all their broken lines and digging, our water lines have clogged, we have since had to replace toilet parts, disassemble and clean all the faucet screens. I replaced the hot and cold water lines to my washing machine. Our dryer died (nothing to do with the water lines people, just another unfortunate thing), bought a new one, the new one doesn’t work as well as expected either, the exhaust to the outside needs to be blown out. I gave up on this one and called my brother in law. Thankfully he will be coming to fix this for us soon (so grateful). I am just tired. I feel like I am being stretched so thin and it makes me feel like I’m failing at everything, Mike’s care, the chores and even taking time to take care of myself. 

As much as I love my husband, I find myself often getting impatient and I am short with him. Because he is in chronic pain, he is also snippy with me. He complains often about the way I do things, my driving, if I forget things (which I do because my brain is overloaded). He often forgets things himself, but somehow blames me. I know deep down he appreciates my efforts but it often feels like everything I do is expected and taken for granted. 

Bottom line is, this is HARD! I readily admit, I am no Superwoman. It’s hard to ask for help, especially because we have received so much help already. But I’m realizing that all the things life is throwing at us, (rides, his care, home repairs, errands, housework, appointments, etc) is just too much for one person to handle. 

What hurts the most is the loneliness I see in him. His friends (and most family, mine & his) don’t come around, they don’t call (except for Cuz). It’s like he’s been forgotten, and I can see how much that emptiness eats at him. It’s a pain I can’t fix for him, no matter how much I want to. Watching him carry that loneliness while I am carrying everything else, just breaks me. As much as he hates dialysis, he has shared with me how much he enjoys his conversations with his “new” friends, who were just recently strangers who have stepped up to help with rides. It’s a known fact that friendship, companionship and fellowship can all be beneficial to a chronically ill person. An occasional visit for him to have someone to laugh with, pray with, read his bible with or just talk with, could not only lift his spirits, it could take his mind off his health issues for a few minutes. It could also give me peace of mind knowing someone is checking in on him sometimes when I am away for long hours at work. I wish people would look at him as the Mike they’ve always known and loved, not see him as frail or broken. I’d like them to realize he is still the same old Mike, although his body has failed him and acts like he’s elderly, his mind is still the 61 year old he is and sometimes even the immature 12 year old that laughs at fart jokes and refuses to grow up.

I think of the words of Jesus in the sheep & goats parable: “I was sick and you looked after me…whatever you did for one of the least of these brothers and sisters of mine, you did for me” (Matthew 25:36, 40) and I wonder, why is it so easy for people to forget about the sick, when his word calls us to draw near?

“A friend loves at all times, and a brother is born for adversity” Proverbs 17:17