The Time Has Come...

Today was Jim's second post-op appointment at the dialysis center. Nurse Kathy did another flush. This time it went much better. We also met Michelle who will be his home dialysis nurse. We have training scheduled for the week of December 10th. At that time Michelle will come to the house and teach Jim how to do a manual exchange. This entails 4 exchanges a day each one taking about 30 minutes. It is necessary to learn the manual exchange in case of power loss and electricity for the cycler is not available.

We return to the center next Tuesday when they will watch Jim clean and change the dressing himself. Our next step then is preparing a room at home for his supplies in preparation for training.

Each day he continues to get stronger.

My thoughts...While we never hoped this day would come, it has. Maybe we were just wishful thinking he could have a transplant before dialysis. That's not going to happen. We deal the cards that are dealt us and make the most of it...and hope for the best.

Missions Possible

Today we went to the Wash U Dialysis Center to have Jim's bandage changed and the catheter flushed out. Ironically, our nurse Kathy remembered treating Lorraine and training her on her cycler almost 20 years ago. It's encouraging to work with someone who obviously loves and knows what she is doing.

After cleaning his incision site, she put in 500 cc's of fluid along with a dose of heparin through his new catheter. While only 300 cc's fluids came out, for the most  part it was working. She attributed the low drainage return to his bowels. Since the catheter sits so far into the intestines, any type of blockage will slow down the output and since his bowels have not moved for almost a week that is most likely the cause.  Mission #1....Poop!

While this all seemed overwhelming for Jim, he was a real trooper. While he said he was not in any pain, he briefly seemed to hyperventilate. It could have been from the mask he was wearing (which we all worn during the process) along with all the anxiety of this new piece of equipment now extending out of his belly, whichever, he was good. Until he heard the part about not showering for another 4-6 weeks. While his incision site looks good, it still needs to heal completely before getting wet. Mission #2...keep him somewhat hygienically clean so we can stand being around him.

Her intent was to begin training on the cycler within the next 2 weeks. After next weeks appointment, we can better determine a training schedule which will be 5 days of in-home training on the cycler. In order to prepare, we need to have a sterilized room (sorry no dogs allowed) and enough space to store the boxes of solutions. I remember this so well with Lorraine. Piles and piles of Baxter boxes of dialyzing solution. Mission #3....clean, sterilize, "dedog" the bedroom and find storage for our new house guest the cycler.

My Thoughts.....Thanks again for everyone's  love, kind words and support. I continue my search everyday for a living donor, but in the meantime, we will embrace the best we can this new life changing development and as I continue to tell Jim to keep positive thoughts. Sometimes easier said than done....

PD Cath is in Place....

Today was Jim's surgery to place the PD catheter in his belly. While surgery was only about 45 minutes, the pre-op and post-op time was long. Jim had alot of pain post-op and we had to wait until his pain was under control before we could leave. He continues to take his pain meds every 4 hours. The ride home was bumpy and uncomfortable for him and he was quite nauseous by the time we arrived home. He's been resting comfortably. We will see what tomorrow brings...

My thoughts: I can vividly remember seeing Jim's grandma and his mom being in this same position. It saddens me that I didn't help them more while going through their treatment. I probably could have learned alot. I honestly believe they are both helping him through this.

Surgery Scheduled

Finally heard from the surgeon. Jim's surgery to insert his catheter is scheduled for November 14th. We are also scheduled to attend a class on peritoneal dialysis (PD) on November 19th.

I continue to find some great resources in searching for a living donor. I have been in contact with a couple potential donors. I get alot of inquires from people wanting to sell their kidneys. Wow...I write them back and inform them that it is illegal in the U.S. to sell organs and to stop wasting peoples time. What is this world coming to???

The Waiting Game

Why does it seem like everything in the medical field takes so long? You wait for the doctor at your office visit. You wait for the doctor’s office to call you for an appointment. You wait for the doctor to call you to schedule surgery. You wait for test results. You wait for a kidney donor. Perhaps it’s just me being impatient, but nothing seems to move quickly.

Jim met with his surgeon last Monday. Dr. Jason Wellen will be inserting the catheter in Jim’s belly. He told him because of his very obnoxious appendix scar, he will have to place it in a little different spot because of scar tissue from his appendix scar.  He left there being told "we will call to schedule procedure within the next couple of weeks". We wait….

The following week on Monday he met with the anesthesiologist and the pre-op people to go over the procedure with him. He completed and signed all his consent forms. He left being told "we will contact you in a couple of weeks". We wait…

Perhaps it’s just me being impatient. Perhaps it’s just me seeing Jim sleep more and more than usual and finally realizing that dialysis will probably be good for him. Ridding him of the toxins in his body making him so tired all the time. Perhaps it’s just me seeing how worn out Jim is from working 10-12 hour days some weeks. Perhaps it’s just me….

My Thoughts:  I continue to scour Facebook and other websites for hours upon hours looking at the numerous groups that support living kidney donation. I have met several people online and it is reassuring to know that we are not in this alone. So many people are in our same situation. It is also encouraging to see how many people successfully find their donor via social media. I apologize to all my Facebook followers for the excessive kidney donor postings I put up, but the more people we make aware of Jim’s situation and the more you SHARE on your site, the better our odds of finding a living donor.

I am grateful for everyone’s love, support and prayers. I am grateful to have Jason helping me with so much around the house that Jim is not always able to do. I am grateful for the times life seems normal. In the meantime, we just wait….

The Next Leg of Jim's Journey

Jim’s doctor visit today was not what we were hoping for, but we knew it would come one day. Since his BUN and Creatinine levels were both up, (BUN was 79, 8-25 being normal and Creatinine 6.2, 0.70-1.30 is normal). Dr. Rothstein wants Jim to start preparing for dialysis. After some discussion with him and his nurse, he felt that peritoneal dialysis would be Jim’s best option. This type of dialysis gives you more flexibility with your home life and you are the one in charge. Lorraine did this type of dialysis 20 years ago. What I remember is a huge machine in her bedroom with lots of bags of solutions hanging all around and she had to keep everything very sterile. Apparently things have changed since then. The machine now is like a suitcase and is portable so it can be taken with you. The bags of solution are more confined.

The first step is to have a catheter placed in Jim’s belly which is the hook-up point. This is done as an out patient.  A couple weeks after this is done, he will go for a weeks training on how to use the machine. I like that the doctor told him that this will be “his” responsibility, not mine. I can observe, but Jim will have to do everything on his own.

The first month he will have to do a manual transfer 3 times a day (not sure how this is going to work with his job, but we will figure that out). After a month, he will be able to connect to the machine and dialyze for 8 hours at night. Hopefully this will give him more energy (which he has been lacking) and he was excited to hear that he would be on a high protein diet (lots and lots of red meat). Not sure how this will affect his ongoing battle with gout, but we will wait and see.

The doctor and I both told Jim to look at this as a temporary thing, hoping that we are still able to find a living donor or his number is finally called on the UNOS transplant list.

I will keep my ongoing search on Facebook and other social media in hopes of finding that one true angel that is out there and can help him. In the meantime, we will march on with this new leg of Jim’s Journey and hope and pray it goes well.

My thoughts….I have always been an optimist and look at the good in things. This is no different. I see this as a chance for Jim to get his energy back and to rid him of the toxins in his body that his kidneys just aren’t able to get rid of. I know that my 30 lb. weight loss was not done in vain because I feel so much better about myself and will better be able to help him….besides me being a donor just wasn’t in God’s plan.

My Mission

Since I am not able to be a living kidney donor for Jim, my mission now is to find him one. In our world of today’s social media, you hear so many stories and read so many articles about people willing to donate to perfect strangers. I have found many websites and have been on many message boards in the hopes of finding that perfect stranger. 

Wish me luck!!!