Transplant Testing Round 5

Whew! Another long day of appointments down!

I originally thought that today would just involve labs and a consultation with the transplant surgeon, so I had arranged for my last two classes of the day to be covered.  I figured that I would leave around noon to head to the hospital.  

But yesterday I got a call saying that I also needed to see the dermatologist. The only opening was at 10 a.m., so I ended up having to take a sub day. I'm trying really hard not to have to take any more sub days so that I have the extra time for leave after surgery, but at least I was able to make the most of the day with multiple appointments.

My regular monthly dialysis visit was scheduled for Wednesday afternoon, so I messaged my nurse and was able to move that to 8 a.m. this morning. This prevents me from having to drive down to Dallas two days in a row. Thankfully, it all worked out, and I was able to start the day at my dialysis clinic.

As far as dialysis goes, everything looks good. My labs are in range, and the doctor seemed pleased with my last report.

After the dialysis clinic visit, my mom and I went to UT Southwestern to see the dermatologist. I discovered that the reason for the appointment was basically just a regular skin check. They wanted to make sure that I didn't have any possible skin cancer spots before transplant. Easy peasy.

After lunch, we went to the lab where they drew four more vials of blood.  Even the phlebotomist didn't know what kinds of tests I was getting done, so who knows what they are checking for now. I think I'm up to about 24 vials of blood, so they can probably test for everything!

The last appointment of the day was back in the kidney clinic with the transplant surgeon. I was a little nervous about this appointment especially regarding my weight.  Usually, surgeons are the ones who are the most stringent about the weight guidelines. At least, that's what I've been told. In fact, they purposely arranged for my surgeon consultation to be towards the end of my testing to allow me time to lose more weight.

The surgeon was extremely nice. He spent a little bit of time getting to know my back story, what led to my kidney failure, my support system, my expectations regarding kidney transplant, etc. He then asked me what other questions he could answer for me. He hadn't even mentioned my weight!
 
I told him that I was a little apprehensive about my weight loss....that I've been working very hard, but I was still 14 lb. away from the goal.  I explained to him that I have been trying to get in to see the endocrinologist, but the schedule is packed until the end of August. Until then, I am just doing what I can on my own.

He pulled up my weight history and saw that I had lost over 50 pounds since I first came to UT Southwestern several years ago.  He then said that it's more than just BMI. Sure, the goal is to have a BMI of 35 or below. Right now, I am at 37.  However, I am otherwise pretty healthy. I work full-time, and I am younger than a lot of the people needing transplants. 

Because of those factors, he said that he does not see any reason why I cannot be listed as active now. 

Wait, what? Did I hear him correctly?  I looked at my mom with shock.

Basically, he said that waiting for me to lose the last 13 or 14 pounds might make me miss out on a really great kidney. Because I have so many years on dialysis, he believes that we should not wait to put me on the list. Also, even though I hope to have Mike or someone else as a possible living donor, he said that we really need to keep all options open at this point. It is possible that an even younger or more compatible kidney might come along as a deceased donor on the regular list.

So, obviously this is a major victory!

However, it doesn't mean that we're home free.

These decisions are made by a team, and this team will likely have some people who disagree with him, saying that I shouldn't be listed until I lose the last 14 pounds. He stated pretty clearly that they will have a "lively discussion" about me when I am presented to the committee. I asked him if my family and I were allowed to attend the meeting. I even promised him that I would bring snacks! Unfortunately, that is generally frowned upon and not allowed. I think I have an idea for a new reality show, though!

Can't you just see it?



He said that he plans on speaking to my transplant nephrologist, Dr. Rojas, within the next few days, but it will probably be a few more weeks before I am presented to the transplant committee. I have a bladder biopsy scheduled for June 9th, and they will most likely want the results from that biopsy before presenting me to the committee.

Either way, we are very, very close to the end of the testing road, and it certainly sounds like the surgeon will be one of my biggest cheerleaders in the meeting. It's possible that I could be listed as active by mid to late June!

I was telling my mom today that I feel a little bit like one of those racing Greyhound dogs chasing the lure around the track. No matter how close it looks, it seems like the finish line is always just the tiniest bit out of reach. Now, though, I finally feel like I can catch it.

I know that - ultimately - I have done all that I can to advocate for myself. At this point, I have to trust the professionals to make the best decision for me and my health. I know that they do not make any recommendations or decisions lightly. They are always trying to think of what will generate the best possible outcome for me, their patient.

This has been a long road. I'm not going to lie. Dialysis is hard. It is a reality of my life, so I try not to dwell on the fact that it is tiring, frustrating, and time-consuming. But, it keeps me alive. I wouldn't be here today without it. So it seems a little unfair to complain about it.

But...

I can't even express the relief that I feel knowing that there is an end to this tunnel. And it is bright, my friends. 

#teamkidney

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