As an event manager, I am fully aware of how often things don’t always go as planned. Also, because I’m a planner, this drives me CRAZY! However, I’ve learned to always have a Plan B and C (and sometimes a D) in my back pocket ready to go in case I need them. Well, this was definitely one for the books as I never planned for the outcome of how this transplant turned out, and I was caught with no back-pocket plan for any of it!

In my previous post, I told you how well the kidney has been doing, but that there were some complications. There were a few smaller issues I had to deal with (the hospital putting more than 30 pounds of fluid on me, causing me to be painfully stuffed like a sausage, an overbearing bossy surgeon who chewed me out for not drinking enough water, the lack of decent GF hospital food), however, there were several larger issues we had to deal with as well. First, they took out a certain stent too early, and that caused a large hematoma right next to the new kidney, and the extra fluid started choking out the kidney, so I woke up in excruciating pain and an emergency surgery to fix it. They said there was a hole somewhere in or around the kidney that could be contributing to this drainage/extra fluid, but they can’t find it. They did a number of tests to figure it out, and ended up doing this procedure where they insert a sort of glue into the veins of that area to clog up any unseen holes (bleck!) and that didn’t seem to work…so I’ve been wearing a drain bag to release this extra fluid ever since. I’m scheduled to have it removed Friday (yaaaay!!!), so let’s hope the draining stops and it doesn’t choke out CB again!

Secondly, I ended up with multiple blood clots in my legs (the “why” is coming next…) and had to have a filter inserted in my chest to keep them from taking a trip around Berta-world.

Lastly, I’m not able to walk. What?? The day after I had my surgery, the nurse had me stand to weigh myself on the scale and I crumpled to floor. After feeling around on my legs, we realized that I lost all feeling in my left leg from the knee down to the ankle. I can move the leg all around, but I can’t kick the bottom half forward, and the slightest wrong turn or weakness causes my left leg to totally buckle and I’m on the ground fast and hard. I fell about 4 times while in the hospital and almost every time, it happened too quickly for the nurse to even catch me! So, I’ve been limited to getting around with a wheelchair or a walker (while someone is with me). When I asked the surgeons why this happened, they were ready to sweep it under the rug and said that they were just focused on the fact that this is the present situation and they need to figure out how to “fix it”. That wasn’t an answer for me, so I pushed. I need accountability. WHY? They finally told me that it doesn’t happen often (about 1-3% of cases), but it does happen. The nerves near where they placed the new kidney could’ve been pinched, aggravated, etc. during the surgery causing my leg below it to go numb, but eventually the nerves WILL come back. It might take weeks or months (one nurse even said a possible year) before I’m fully functioning normally again, we just don’t know. Nerves are funny like that.

So, throughout my hospital stay, I had physical therapists and occupational therapists visiting to help me learn how to function again with a partially bum leg. After being released from the hospital, they sent me to stay a while at the Rehab Center next door for full-time therapy. They worked me out pretty hard and I was both physically and mentally exhausted everyday, but I was seeing some progress. Progress in my strength and abilities, just not in the nerves/feeling. So, there’s still that, but I’m motivated to keep pushing the therapy until I can be myself again. I went to see an Orthotics doctor yesterday to discuss leg braces that will help me be more stable when standing/walking! I’m anxious to see if this works for me!

This whole leg thing is crazy frustrating. Who would have expected that I’d walk in to get a kidney and *not* walk out due to a non-working LEG? Definitely not in MY plans! Do I have a bit of anger at the fact that this happened, sure, but the anger is so small now because I’ve chosen to focus on staying positive and hopeful that I’ll get past this, and most importantly that my new kidney is doing great and I’m no longer on dialysis! Knowing there’s nothing else I can do, this is where I just go with what I have and make the most of it. Things at home are a bit…messy as we try to reconfigure our furniture and routines, but I’m learning (or trying to learn) to be more patient with myself and the situation. This too shall pass and I’ll be all the more stronger because of it (I hope!)

Link to donate:

For Financial – Help Hope Live – https://helphopelive.org/campaign/27559

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Things I’m thankful for today:

1. My family (they keep on popping up here…hee!). This has been a HUGE adjustment, not only for me, but for my entire family! I’m literally having to depend on them for half of everything I do right now, and until I get cleared to walk on my own, I’m stuck in a wheelchair or having one of them follow me on the walker. There’s a lot of relaying around the room as they help me retrieve forgotten items. They have to help me in and out of the car and the transport chair, and oh yeah, I can’t drive anywhere. So, there’s a LOT they are doing to help me out! I keep reminding them that this will help them get their daily steps in. LOL! Seriously though, I’m sooooooo so lucky to have them here to help me out! I can not imagine how I’d manage without them! So, thank you Mom, Dad, and Barbara for all that you are doing! You are all angels!

2. My friends. I have one word for them – Wow! Throughout this entire experience, my friends showed me the most amazing support! I received the most inspiring messages from everyone on an almost daily basis and it was the BEST help I could have asked for! On days when I felt “off”, they helped me feel “normal” again. They inspired me, made me laugh, boosted my spirit and confidence, and comforted me knowing they were there for and with me. Thank you so much and I love each and every one of you who were a part of that! Now, I can’t wait until I’m cleared and able to give each of you a huge hug in person! 😀

3. Being home. Being stuck in a tiny hospital room (and in isolation due to the whole COVID thing) for six weeks really makes you appreciate the small comforts of being at home: a decent pizza, good TV (we couldn’t use my Fire stick…ugh…1st world problems), a comfortable bed, my fur babies, being able to sleep through the night without 20 people waking you up each night, privacy, nice views out my window…I could go on…

4. The rehab center. I was very impressed with the rehab center and their staff. They know that none of us want to be there and are not enjoying being in the situations we were all in, but they were SO supportive and encouraging! Every little accomplishment was celebrated (I even witnessed one patient fall and 6 therapists who were there to help him up were telling him “you’re doing great!” “good job!” LOL!) and despite the fact that I was basically working out for 4 hours a day, I really enjoyed it! It was fascinating to see how each disability was being treated. A few of us who were in a few group sessions jokingly formed a “club” and we ended up cheering each other on during our sessions. My therapists were awesome at targeting the problem and finding ways to help me progress, and I truly felt I did! So to all of you, thank you for doing what you do! I’m in awe!

5. Accessibility “tools”. When I was upset about having to use a walker, etc., I had a friend change my way of thinking. She pointed out that these tools – the walker, wheelchair, etc. – are made to HELP us get better and to live a more normal life. They are not a punishment or something to be embarrassed about. I had never thought of it that way, but she’s right. It’s really given me a new perspective and I’m grateful to have those tools at my use.