Daniel 2 hearts Blog

So one of my main anti-rejection medication was just recently changed. The med was causing severe headaches , trimmers and a cloudy brain feeling. So, the doctors decided they wanted to switch me to an older version of this medication because the side effects I was having had shown to be lessened in the older version. I'm not sure how I feel about an older version, I mean we create new versions for a reason. Little nerve racking, for me atleast. So I've started this older version, and I have noticed lees headaches, little to no trimmers and no foggy brain. But, theres always a but, I've started to have more swelling in my legs. Also, my manly parts have been affected in certain ways. Needless to say I think I'm going to go with the headaches and trimmers, LOL. Meeting with my doctor soon, hopefully he has some solutions other than the newer version of this medication. Overall though, don't get me wrong, this is all worth being given another chance at life .

Heart transplants can impact other organs in your body, severely sometimes. In my case as in a lot of others it is my kidneys. I had congestive heart failure for 15 plus years before my transplant. Basically my old heart did not pump out as much blood as it should. Kidney's can be very delicate, and with my heart working  at a reduced function, my kidney's blood supply was diminished for many years. Add that to heavy medications before and after heart transplant, my kidney numbers have been up and down since transplant. At times my numbers get so bad I technically qualify for a Kidney Transplant. Though during those times, the only symptoms I have are swollen legs and some fluctuations in my blood pressure. 

My heart transplant was now around 9 months ago, as you may know I have to take several anti-rejection medications. If your are not familiar , when you have a transplant your body automatically tries to reject that new organ. It's part of our immune system, my body sees the new organ and thinks its a new virus or disease or something that's not suppose to be there. To keep this from happening I take very strong medications that suppress my immune system down to almost nothing. The benefit is my body doesn't reject my heart, the down side I can get sick very easy and the normal things my body would fight off without me even noticing it, now it does not.

After undergoing a heart transplant, adapting to a new lifestyle becomes a crucial part of the recovery process. We must make significant changes to our daily routines and habits in order to maintain a healthy heart. This includes adopting a heart-healthy diet, engaging in regular exercise, and avoiding activities that may strain the heart.

In addition to physical changes, we may also need to make adjustments to our social life. It is important to be mindful of potential exposure to illnesses or infections, as the immune system may be weakened due to anti-rejection medications, in my case I am forced to be very mindful of this. This may mean avoiding crowded places or wearing a mask in certain situations.

Overall, adapting to a new lifestyle after a heart transplant requires patience, discipline, and a willingness to prioritize one's health. It may take time to find a new sense of normalcy, something I am still eagerly awaiting. But with the support of healthcare professionals, loved ones, and fellow transplant recipients, it is possible to navigate this journey successfully.

The absolute worse side effect during my recovery has come from my anti-rejection medications. Somehow one of my medications caused me to have higher levels of uric acid than normal. For those that are not familiar, if you have high levels of uric acid that acid can start to crystalize within your joints causing agonizing pain and swelling. I developed gout in both ankles and my left knee, but the knee was by far the worse. At one point it got so bad I had to be hospitalized for 3 days purely because of pain. It took a couple months, but my doctors were finally able to find medications and dosages that kept my flares under control. But that pain was no joke, at times it was more painful than the post-transplant surgery pain.

I thought after missing our first flight and the boat and having to fly to the Dominican was the end of our issues for this trip. Boy was I wrong, due to carnival cruise providing us incorrect information the night before debarkation we were late getting off the ship which in return caused our window of time to catch our flight much smaller. I'm sure you can guess at this point, but we ended up not being allowed to board our American Airlines flight, even though we made it to the gate within their stated policy amount of time. Bottom line they gave our seats away and didn't want to let us on because they knew they would be forced to admit they gave our paid for seats away.  I can go into more detail, it's a lot. But bottom line their policy states you must be at their boarding check-in counter at least 15 minutes before departure time, which anyone who can read time would have to admit we met those criteria. It's my opinion American Airlines are just greedy crooks and most of the customer service-oriented employees are just as bad. We have sworn off American Airlines along with the rest of our family. So ended up being rolled over and over again to standby list with no luck. None of the staff seemed to care at all also, just an fyi. My wife and I met an older gentleman that had been put on standby going on over 24 hours at that point. Unfortunately, this gentleman only spoke Spanish and American Airlines seemed to do even less to assist him, if that's even possible. After around 10-12 hours we finally caved and put two new tickets with delta on a credit card, so we could get home to our kids. By the way Delta, night and Day compared to American Airlines. Delta at least seemed to at least care some and made an attempt to assist us. My recommendation Fly Delta not AA!

I am currently sitting in a hotel in the Dominican Republic, normally that would be said with enjoyment. I am suppose to be on a cruise sitting on my big balcony watching the ocean crashing against the ship. So, with my heart issues and transplant it's been a while since my wife and I have been able to take a vacation. So We planned a cruise out of Miami , we live in NC, so we booked a flight.  A new policy The airline we flew on had is you must arrive at baggage checkin atleast 45 minutes before your flight in order to be given a boarding pass. This was not the case not so long ago, before if we were  there 20 30 minutes before it didn't matter, it was just our risk if we or our bags didn't make the flight. Anyway, we arrived about 45 minutes before flight, but it took 15 minutes to make it through the line so ,they wouldn't let us on. For those that may not be aware Cruises normally leave port at 4pm and you have to check in no later than an hour before departure.  So we had booked this flight from NC to Miami at 6:15Am, thinking we  would have plenty of time, heck its only a 2 hour flight. Well now that they wouldn't let us on, we had to catch the next flight , which was  leaving at 7:30am arriving in Miami at 12:50pm. We thought doesn't leave much time for error, but it should get us there on time even still. That was until we boarded the plane and were told a ground stop had been issued and we would be sitting on the runway  for an unknown amount of time.

I wanted to pick up from my last post and touch more on the recovery mentally and physically. After going through cancer, heart failure and a transplant, all types of things start to run through your head. You of course go through the "why me" phase and in my case, I went through also what I call "it's never going to end" phase. During recovery it seemed like every time i made progress I would then take two steps back. All the medications started to do a number on my kidneys, a constant battle of making sure my medications were at a dose that was effective but at the same time does not destroy my kidney's. At 6 months post op I finally started to feel a little normal and I'm hit with "you need to be evaluated for a kidney transplant". So, I went through a process to determine if I qualify for a transplant for my kidneys. Believe it or not it's actually harder to receive a kidney transplant than a heart, strange I thought. At this point some of my other symptoms from medications and the transplant are actually getting a little better. To wrap this post up, the kidney team called me a few weeks back to inform me my kidneys number were bad, but not bad enough for a transplant. So, good and bad news there, I guess.

FIRST POST       

Recovery after a heart transplant, I don't think anyone can prepare you for it. Believe it or not the roughest parts come from the anti-rejection medications you have to take. In my case my body also ended up swelling allot post-surgery, no joke I gained about 70 pounds in just water. I was holding so much fluid I could barely walk because my legs felt like they were filled with concrete.