My Turn

Today was my turn for testing.  It went fairly quick. I had 9 vials of blood drawn, a chest x-ray, urine test and an EKG done. Once everything comes back ok (as I’m sure it will)…..we can proceed to the next step.  A CT angiogram of my kidneys.

Let’s keep this moving…..

Sometimes it doesn't pay to get out of bed....

That’s what Jim said today when he called me at 9:30 am from the Emergency Room. My initial vision was of him with the new “fistula” in his arm rupturing. Thank goodness, but……

I can usually tell from the tone of his voice if something is wrong and I felt that tone. Today was his first day back to work since the surgery he had in his left arm. While he usually works the night shift, today he was on the day shift working with someone unfamiliar to him. While Jim had his right hand in the press adjusting springs, the guy decided to turn on the press. Not a good idea.

While he still has all his fingers intact…..it completely peeled off the skin  from the tip of his middle finger. While he probably will have to have skin grafts on his finger, he said he was feeling ok. He was able to drive home. So for now he has limited use of both his upper extremities.  I think I’m going to have to buy him shoes that velcro.

Can’t wait to see what tomorrow brings…..

Ready for Dialysis??

We hope not. But just in case, Jim is now equipped with a fistula in his left arm should the need for dialysis occur. While it will take about 3-4 months before it heals and could be used for hemodialysis, if it never gets used, thats fine. It's not hurting anything. That's what we're hoping for.

We arrived at Barnes at 7:00 am this morning for the procedure. They took him to the OR around 8:30 am. The procedure lasted around 1 hour. While Jim wanted general anesthesia, the anesthesiologist opted for a local anesthetic. They assured Jim that if he was feeling pain, they would keep him sedated enough to control the pain. He said he was able to hear while the procedure was going on, but also was able to sleep some. The recovery time with a local anesthetic is much quicker and we were out of the hospital by noon. He has a 5" scar on the inner part of his arm. While it is open (no bandage covering it) and is somewhat bruised, it doesn't look bad at all. I knew he was feeling ok when in the typical Jim fashion he said he was hungry and wanted a cheeseburger!!

He is home resting now and recovery should be quick. The only long-term effects he will have with a fistula in his arm is that he can never have an IV or his blood pressure taken in that arm. It could cause the fistula to clot. For the next few days he has to take the stethoscope he was given (god only knows how much that cost us) and check the "heart beat" of the vein to make sure it is getting blood flow. If he feels tingling or coldness in his arm/fingers, he is to call the doctor immediately. This means he is not getting blood flow through the vein. He was also sent home with plenty of paid meds (his favorite) which always helps.

My Thoughts.....All in all everything went very well today. While this is the next step in Jim's Journey, we are still hoping for a successful transplant in the future. Fingers (and fistulas) crossed.

Back on Track

I have been working really, really hard for the past 9 months on getting my blood pressure under control. At my doctor’s visit on Monday, I was getting good readings. Dr. Roth has been increasing the dosage of my blood pressure medication gradually and I am officially on just 1 medication. This is one of the requirements in order to be a kidney donor.

I also started Weight Watchers about 5 weeks ago and have lost 6 lbs (hopefully more….weigh-in is tomorrow!) and she thinks that may have also helped. I’m continuing to go to the meetings and hopefully will continue to lose weight.

I contacted Jean, the transplant coordinator at Barnes, this week and after discussing with the transplant team, I am officially reactivated as a potential living donor.  I can now proceed with the rest of the testing. I have an appointment on Wednesday, February 22^nd to go to Barnes for additional blood work, screenings and x-rays. Once that is complete, the next step is a CT angiogram of my kidneys where they run dye through my veins to make sure my kidneys are properly functioning.

While this seems to have been a long detour….hopefully we are back on track.

Surgery Scheduled

Today Jim had his pre-op appointment for his fistula surgery. It is scheduled for Wednesday, February 15th. While it is done as an outpatient procedure, it is still a 1-2 hour procedure done under general anesthetic. Dr. Patrick Geraghty is the vascular surgeon performing the surgery at Barnes.

Here is a better explanation of what will happen....

An AV fistula is a dialysis access that is created by connecting an artery to a vein during a short surgery. AV fistulas can be created anywhere from the wrist through the upper arm.

 

The process of hemodialysis requires that blood pass through an artificial kidney. With a fistula, blood from the arterial side of the fistula passes through a needle into the artificial kidney, is cleaned, and returns to the body through a needle in the venous side. A fistula is useful because arteries are deep in your body and would be difficult to get an access needle into.

The recovery time is pretty quick and complications are minimal.

In the mean time, I continue to work on my blood pressure. I started Weight Watchers 3 weeks ago in hopes of losing weight which would help with my blood pressure. I have increased by blood pressure medication and go back to my doctor on Monday. While I would love to have a handful of Oreos and milk for a snack tonight.... I'm going to settle for an orange.

Once I can get my blood pressure under control, hopefully we're on our way for a transplant and this whole fistula surgery will have been for nothing. Keep praying......

I Wish....

I wish there was a cure for PKD.....
I wish Jim could sit in his chair without falling asleep....
I wish Jim could eat a big 2" steak that he loves so much....
I wish Jim would never have to go through dialysis....
I wish Jim could sleep without a big fleece blanket covering him....
I wish it was a law that every deceased person's organs would be donated to someone in need....
I wish my blood pressure would come down....
I wish I could lose weight then maybe my blood pressure would come down....
I wish Jim didn't get gout and that the medicine he takes for it wouldn't make him sick....
I wish Jim had the energy he once had....
I wish Jim didn't have to go for blood work every month....
I wish Jim didn't have to have a fistula put in his arm in anticipation of dialysis...
I wish I was stronger....
I wish Lorraine was still here...

I wish wishes came true....

Next Step....Fistula

Today was Jim’s 3 month checkup with Dr. Rothstein his kidney doctor. While his kidney function continues to deteriorate, he still is feeling good. He actually gained weight, which the doctor said was a good sign.  Once he starts to lose weight, has no appetite, (yea….like that’s ever going to happen), or has a metallic taste in his mouth, those are signs that the toxins in his body are building up from lack of kidney function and would then have to start dialysis.

His next step is to have a fistula put into his arm for when or if he would have to start hemodialysis. A fistula is an enlarged vein (usually in your arm), created by connecting an artery directly to a vein. Connecting the artery to the vein creates much greater blood flow into the vein. As a result, the vein enlarges and strengthens, making inserting of needles for hemodialysis treatments easier.  This is done as an outpatient procedure by a vascular surgeon. Lois, the nurse coordinator, is setting up an appointment with a surgeon to have this done in the next few weeks.

It is best to have this done ahead of starting dialysis. If you wait too long and may require dialysis sooner than expected, and do not have a fistula for access, a catheter is inserted into your neck or leg as a temporary access.

Vicki, the social worker, came in and talked to us about dialysis. While our plan is to still have a living donor transplant, she has to tell us all the options in case that doesn’t happen. She told us about Dr. Koch who has a dialysis center in Fairview Heights that they refer patients to. While it would be more convenient, Jim seems to like them at the Barnes dialysis center and would be ok going there.

Dr. Rothstein then came in and wanted to make sure we knew of all the dialysis options. He talked about peritoneal dialysis (which is what Lorraine did at home).  It is done with a machine while you sleep every night. Initially this was Jim’s 1^st choice, but with his work schedule, it may not be viable. I think he is finally ok with the hemodialysis. Our hope is that he won’t have to make that choice.

I am still working on my blood pressure with one medication. I see my doctor next week and hopefully we will be able to find something that works.

Jim has to now start going once a month now for blood work and will continue to see the doctor every 2 months.Please keep him in your prayers.....

My Thoughts....I can't help wonder how many people are not organ donors. I hope you have the organ donor box checked on your drivers license and talk to your family about it. This simple thing could save so many lives. Someday YOU may need it.