The Tito Telegraph.

September 21 update from Tito.

For the last few years I’ve been in a constant state of exhaustion. Minus the 6 weeks I had a functioning kidney earlier this year and the 16 days after this second transplant.

This started probably around November 2020. Every day since then has been rough. I tried not to show how exhausted I was out in public, maybe it showed maybe it didn’t. I don’t know. I found out real quick I needed to be very selective on what I spent my energy on. This meant some times I would go a few weeks without cleaning up around my apartment, or going grocery shopping. Instead I’d use the energy for public outings and activities I actually wanted to do.

Looking back, it is amazing how much I was actually able to do these last couple of years while having to do dialysis three times a week (after treatment my day was over, nothing got done after treatment until the next day) and only really being awake about 10 hours a day, some times 12. I was still exhausted throughout but just pushed through.

Why was I exhausted?

There’s a few reasons but the main one is high levels of creatinine.

Creatine is a chemical made by the body and is used to supply energy mainly to muscles. It is a waste product though.
The kidneys filter creatinine from the blood and excrete it through urine. High creatinine levels can indicate kidney issues.
Symptoms of high creatinine levels include:
Nausea
Chest pain
Muscle cramps
Vomiting
Fatigue
Changes in urination frequency and appearance
High blood pressure
Swelling or fluid retention

The main function of dialysis is to filter this out to acceptable levels, this does not mean normal healthy person levels. So some energy comes back, but not much. They take off just enough to keep you alive.

With both transplants I saw an almost immediate increase in energy, within a couple days of the surgery.
I had been exhausted for so long, that became my normal. I had to remind myself that the rest of the world is not feeling like this all the time and that is why they can do more activities than I can.

Now that I have a functioning kidney again, my Creatinine levels are close to healthy person normal. Not quite there yet, but close enough.

I can now stay awake for a full day. It will take some time to ease back into living with this much energy and trying to figure out what I can and can’t do.

A kidney transplant has a HUGE positive impact on the recipient’s quality of life, and a minimal negative impact on the donor’s quality of life.

For now I’m good, I have plenty of help and I have a new kidney. There are many out there that aren’t good and need help.

September 10th update from Tito:

Quick update. Being home is nice.
I am not sleeping well at the moment because my bladder is learning how to work again so I’m getting up quite a bit in the middle of the night to urinate. If you remember from some of my earlier posts, I am supposed to drink between 2 and 3 Liters a day of water preferably. It all has to go somewhere and there is no machine to get rid of it.
Urine happens, plan for it. Get some extra sheets. Have extra clothes to take with you on outings.

I have a vacuum pump that is supposed to help the wound heal. There is also a JP drain. Things to carry with me everywhere I go for a few weeks.

You may see me out in the wild, mostly getting some walking time in. Say hi! I’ll probably say hi back. Although, I may be in a hurry to pee, and I may keep a bit of distance for the first few weeks post op.

There is a lot to process, I am definitely not sitting around wondering why no one is reaching out. For me this is what I need right now so I can just focus on listening to the body and processing all this information. I appreciate all the kind wishes from the comments and I know there are lots of people out there just wanting the best. Give it some time, I’ll get there. Thank you all!

The first 90 days seem to be the most crucial. Last time I got to 60 days. That was rough, but it needed to happen. Without the transplanted kidney having issues, we would not have found that very aggressive renal cancer. That’s my story and I’m sticking to it.

Anything can happen now, including it working for 20+ years.

It looks like I’ll be getting up pretty early. It’s been a while since I’ve been up this early with energy, so I’ve forgotten what I would usually do. Also I can’t lift anything over 10 lbs or do many exercises. What do you do early in the morning? (While I was on dialysis it was very tough to be awake before 9 am due to the body just being absolutely exhausted all the time)

Lastly, huge thank you to Elizabeth Lugo for flying up again to help out. She had been here for 7 months during most of my previous surgeries and is now back to help me out again. Very thankful to have family and friends willing to help me out in tough times.

September 8th -more good news.

Post Op Day 4.
Sounds like it is time to be released back into the wild.

They monitor a lot of information during the few days after the transplant, at the hospital. Main thing they are looking at is making sure Creatinine is coming down. “Normal” range is 0.6 to about 1.1 mg/dL
This will most likely not be my “normal”, we won’t know what this will be for a few weeks.
After dialysis on Monday (before surgery) I was at about 7.5, now I’m around 2.2
Kidney is working.

They also monitor urine output, they pump you up with a lot of fluids, 200 mL or more an hour for the first days and see how much comes out. Urine has come out. Kidney is working.

Another major point is Blood Pressure. Blood Pressure is controlled by forces from the Heart, Lungs, and Kidneys. Maybe some other organs too but these are the major ones. When the kidneys fail they can’t remove the extra fluid causing high blood pressure.
When the blood pressure comes down or is under control it means the kidney is working. Kidney is working.

Lastly, they check the tacrolimus level. Essentially this is the anti-rejection medication and they are checking to make sure the body is processing it in an appropriate way and can maintain appropriate levels. This is to make sure the body does not reject this foreign organ.
There’s some other stuff that gets measured and monitored, but that’s more for just general staying alive things.

This time around, and also being the 8th surgery for the year… In 8 months, has been so much easier.
The first transplant was really my first major surgery ever, very scary, lots of unknowns. Now all the nurses and techs on this unit know me, I know the routine. Just Tylenol has been enough to cover the pain this time around.

September 6th – a very happy and emotionally complex update. Tito got a kidney!

Transplant update.
Things are progressing very well. This time around the pain has not been so scary.

Lots of different medications, lots of things to test for.
Surgery sounds like it went well.

This kidney came from a Deceased Donor. Don’t know where it came from. All they could tell me is that the donor was early 30s. Had a questionable medical history. Had Hep C but currently negative. And tested negative for all the other fun things.

Very tough decision. Turns out Hep C can be treated in 12 weeks of medication if caught early enough. So they will be testing for that in the upcoming appointments.

Questionable Medical history can mean a lot; drug use, questionable sexual history, maybe no medical history due to not going to doctors. They can’t tell me any of that. Just that medical history is questionable.

Tough decision. Do I accept this kidney knowing that there are some questionable issues? I accepted a Living Donor kidney that had none of this and that one failed. Will this one fail too? Well we know the answer. It will fail, we just don’t know if it fails in a week or in 20 years.

Obviously, I accepted the kidney.

I am still processing that someone had to die for me to get a better quality of life.

Aug 22nd update. Tito’s own words continue to be the most difficult, uncomfortable, and most essential to read. How about it? Any social media marketing gurus out there?

Dear friends and supporters,

I wanted to provide you with an update on my recent kidney transplant journey. As some of you may know, I received a life-changing kidney transplant in January, which brought me moments of incredible joy and renewed energy. Regrettably, in March, the transplanted kidney had to be explanted, causing great disappointment and added stress to my already challenging situation.

Throughout this journey, the measure of my progress towards a normal, healthy life has been the level of creatinine in my blood. Typically, individuals with a transplanted kidney aim for a creatinine level around 1.5, a level rarely achieved. Miraculously, my creatinine dropped to an astonishingly low 1.7, bringing me close to the energy levels of a healthy person. For those six weeks, I experienced a revitalization I hadn’t felt in ages. I could stay up for an entire day, engage in various activities, attend doctor appointments, and enjoy the simple pleasures of life. It was truly remarkable to have the freedom to do the things I had longed for, including the possibility of returning to work.

However, my current reality is filled with frustration and exhaustion. With only four days available each week and constant fatigue, it has become increasingly challenging to find a potential kidney donor. The difficulty lies not only in convincing someone to donate their kidney but also in navigating the limited time and energy I have available. I often wonder if healthy individuals who could potentially donate are reading my posts, assuming that someone else will step forward. Is it possible that a kidney will eventually become available? With the number of views and visitors, surely there must be someone out there willing to donate, right?

Well, maybe. 🤷‍♂️

Since launching the website and sharing my story, I have been overwhelmed by the interest and support I’ve received. To those who have shared my plea, I am immensely grateful. Your efforts have made a significant impact, and I can’t thank you enough.

To date, the website has received an incredible 438 views, indicating that many people are genuinely interested in learning more. However, I must admit that the conversion rate has been disheartening. Only two individuals have filled out the survey, unfortunately discovering that they are not eligible to donate. As it stands, the conversion rate stands at a mere 0.45% of all visitors to the site.

Yes, people are seeing my story, and yes, they are inquiring for further information. Yet, it is undeniably frustrating to witness these numbers and find myself lacking the time and energy to explore additional avenues for spreading the word. I currently share my story with practically everyone I meet, often within the first few minutes of conversation. Still, I am searching for new ways to reach a broader audience and make the website more compelling, encouraging visitors to take action. Naturally, the process requires the exchange of personal information, and understandably so.

While I am fortunate to have received assistance with transportation, meals, and other daily tasks, I am now reaching out to you all for help in spreading the word and finding a potential kidney donor. I am open to any suggestions or ideas that may alleviate the burden on my already limited resources. Your support means the world to me, and I want you to know that I am deeply appreciative of all your efforts thus far.

Together, let us join hands and make a difference by raising awareness and finding a hero who is willing to donate a kidney. Time is of the essence, and every action matters. With your continued support and assistance, we can bring renewed hope and a chance at a healthier life.

Thank you from the bottom of my heart for being there

I’ve been dwelling a lot lately on how to talk one of you out of a kidney. Tough gig. Seems like most of us are rather attached to both of ours, never know when you might need a backup after all. As most of you know, my friend Tito needs a working kidney. I’ve pondered this problem a lot lately, how to argue for a kidney? As I said, tough gig.

This is all mere bluster and complaint, actually. I don’t spend all my time thinking about a kidney, but Tito does. Every minute of dialysis, every exhausted night of recovery from five recent surgeries, every waking moment. He’s got lots of time to ponder, and lately he’s been writing a lot of those ponderings down. Since I can’t find my own words, I thought I could at least publish his often riveting observations about dialysis and the search for a new kidney. Attends.

titoneedsakidney.com

Dialysis was tough yesterday. Not because of pain or because I’m over 310 treatments now.

On Wednesday there was a patient that was unresponsive for a bit. They were able to wake them up pretty quickly though. Whole thing lasted about 5 minutes.

On Friday, same patient looked like they were taking a nap and was unresponsive again. This time it took a while to get them back. The crash cart was used. There was an Automatic External Defibrillator being used. This was neat to listen to. Told everyone to stay calm and gave very clear instructions to not touch body or that it was not recommending shocking the patient. It also gave instructions on starting CPR and helping keep the right rhythm. Or even to push harder.

Once CPR was started, paramedics were called. Two teams showed up, because more people means shorter shifts on CPR duty.

Every 30 minutes everyone’s blood pressure is taken. This event lasted about an hour but the real intense parts were right around one of these blood pressure reading moments. There’s a little alarm that goes off when the blood pressure is too high. Just about every patient’s blood pressure was high at this moment.

There’s a lot going on visually, nurses and techs running around in what appears to be a state of controlled chaos. Teams of paramedics come in with their very bright colored bags and equipment. Eventually the clinic put up barriers for privacy for the patient, but this took about 40 minutes.

There was also a lot going on sound wise. Nurses screaming the patient’s name. The AED giving instructions. Head of the clinic on the phone with 911. Paramedics asking questions. The alarms for many patients going off for high blood pressure. The sound of the patient trying to breathe.

I could do nothing about it. I could not help the patient. I could not leave my chair, or stop treatment and go home. The noise was loud enough to make its way through the headphones. The patient was directly in front of me for this hour long event.

That’s all, no words of wisdom today. I’ll leave that part to you.