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.

Gout 2....Jim 0

As Jim's kidneys deteriorate, he seems to be getting gout more often. He's been really good about not eating red meat, but his kidneys just don't seem to be able to process as well causing severe gout flare ups. It happened not only once, but twice this week. We have started a routine which includes:

Step 1.... getting the cane or the walker out. The pain in either his foot, toe or knee is so excruciating he can barely walk.

Step 2...try to find bing cherries as quickly as possible. That's not always easy this time of year....FYI you can find at Schnucks for $7.99 a lb...ugh. If we can't find bing cherries, marichino cherries will do.

Step 3...water, water, water....drink lots of water.

Step 4...stop taking allopurinal and start taking colchicine every couple hours (along with pain meds of course!!)

Usually within 24 hours he seems to get better and the pain starts to subside. Jim's comment yesterday was..."if I'm going to keep getting gout, I might as well eat steak again".

If anyone has any other gout cures or remedies....we are always willing to try anything.

My thoughts....I'm thinking Jim's going to have to get a transplant or else start dialysis sooner than we had expected. I continue to work on my blood pressure in hopes of being a donor. We both go back to the doctor in January, so in the meantime, I'm hoping that we can make it through December with no more gout attacks and enjoy the holidays. 2012 should be very interesting.

Jim Made the List!!!

Jim just got exciting news today from Mitch his transplant coordinator. He has officially been placed on the UNOS Kidney Transplant list. He has passed all the criteria needed to be placed on the list. What this means is that if a deceased donor matches Jim's blood tissue/type, he will be a candidate for a transplant. While there are thousands on the list, it is encouraging to know he may at some point be recognized as a potential recipient and just being on the list seems positive. I have read some articles that sometimes 6-12 months is the average waiting time. Hopefully this will hold true......especially, now that I am having trouble with my blood pressure and will not be able to be a living donor unless I can lower my blood pressure with being on just one b/p medication. Hopefully we have time to work through this before Jim would have to start dialysis.

Today he was told.....

1.  For starters he will have to keep his cell phone with him at all times. (Not easy for Jim....never seems to carry it with him or turn it on). Years ago, they would give you a beeper to carry with you, but now in the age of cell phones, this is their primary means to get a hold of you if and when a kidney is available.

2.  He will have to go for blood work once a month. This is to keep his bloodwork information up-to-date should a potential kidney be available.

More information is coming to him in the mail. Thanks for all your love, support and prayers.


My thoughts....I am excited to hear this new information especially now that I see Jim getting more and more fatigued with just daily living. A new kidney would certainly make him feel so much better and some day again he may even be able to enjoy a good steak!!!

Another Day of Testing.....

Today Jim had more testing for his kidney evaluation. He had previously done all this last August with the exception of the stress test. His day started out with a Dobutamine Stress Test. This particular type of stress test is done on patients not able to exercise. A drug called Dobutamine is used to make your heart beat harder and faster as if you were exercising. Images will help determine if there is an area of your heart muscle that is not receiving enough blood. It lasted about an hour and went well.

He then preceded to the lab to have 27 viles of blood drawn (sounds like enough blood to feed all of the Twilight characters). He also had a chest x-ray, EKG and dental panorex x-rays done.

Now we wait to hear from Mitch, his transplant coordinator as to what his next steps are. Hopefully he will be put on the transplant list right away.


My blood pressure update....I continue to change my medications in hopes of lowering my blood pressure. I am watching closely what I'm eating, I have starting walking a mile a day and hoping this will help.

Bump in the Road....

I received a phone call from Jean in the transplant unit who reviewed my paperwork that I submitted. They are still concerned with my blood pressure being too high to be a donor. I have tried for the past 6 months to be on only 1 blood pressure med (doctors orders) but my blood pressure still is too high. She advised that diet and exercise would help lower my blood pressure, so now I am attempting to do both (diet & exercise) in hopes this will aid in lowering my b/p. I am going to continue to work with my doctor on trying additional meds. Keep your fingers crossed and prayers coming (and hopefully the cravings I'm having for Oreos will pass).

In the meantime, there is no further testing I can do. If I am not able to be a donor, we're back at square one. If anyone is interested in being a donor...contact Jim's kidney transplant team at Barnes Hospital at 1-800-633-9906 (option 2).

Jim is still scheduled to continue his testing. He is scheduled for a stress test and other tests on November 16th. Once his testing is complete, hopefully he will be put on the UNOS transplant list and the wait for a donor begins.

My thoughts
Everyone should sign their drivers license to be an organ donor. Something so simple could save the lives of so many people. Just recently we lost a couple of friends of ours unexpectedly. I can't help but think what happened to their kidney?? Could it have been used to help Jim or someone else. It is something we don't think about until we need it....

Knee Update

It's been 7 weeks since Jim had his arthroscopic knee surgery. Once he got past the severe case of gout during the 1st week, it has been smooth sailing. He started physical therapy this past week and goes 3 times a week for the next 2 weeks. His movement and bending his knee wasn't quite what it should be, so hopefully the physical therapy will improve that.

He goes back to the doctor on November 3rd, and hopefully he will be able to go back to work. While it's been nice having him home these past several weeks (runs errands, cooks dinner, cleans), I'm thinking it's time for him to get back to work. May be hard now that duck season has started!!!

Kidney Update
Jim is scheduled for a stress test on November 16th.
I have completed and mailed in my donor paperwork and I am waiting to hear my next steps.
My blood pressure seems to be somewhat high, but I'm still working on that.