My first year on dialysis

24 listopada, 2023 * olahola
A few days ago, my first year on dialysis passed, and to mark the occasion, let’s have a brief recap. In this way I want to show what can happen on the way to transplantation. I hope that any of my experiences will be helpful to you:)

The first very important point- mental preparation. In May 22′ I already had a fistula created. Since June I have been puncturing it 2 or 3 times a week. The results still allowed me to go on a two-week vacation to the south of France with my parents and Bartus. Heartfelt greetings to Aunt Stefa and Uncle Olaf for this opportunity<3 
So I still managed to enjoy the sunshine, splash in the sea, eat the most delicious fruit in the world and generally take my mind off my health for the last time (sounds dramatic, but all in all it’s not so bad). Here, of such more practical things for people who are also about to start dialysis any moment now-I had acne for the first time. No tragedy, but only after time I connected the dots that it was from bad results and only dialysis helped me. Coming back, after the vacations, October was also kind, so the last weekend before I was scheduled to start dialysis I went on yet another mini vacation. This time a romantic vacation for three, where I wanted to get out one last time (hihi).

And so we have November 22′ – we start playing. And seriously, we do not start, because it turned out that despite 3 months of puncturing, the fistula is still not ready:’). After two weeks it has really started. At first it was hard. Mostly emotionally. For the first dialysis I came in so scared that my head was so small. I survived. The nurses are super. Was it because I looked like a scared 13-year-old? PERHAPS, A TOMATO. As for the physical aspect, it’s so much harder with a fistula, because at first this insertion is felt. Well NOT COOL:)

November 22′- January 23′- in plans to excise the transplanted kidney. To get to this stage, the body must first cleanse itself through dialysis. Unfortunately, conditions are moderately favorable-the fistula works as if it wants to and can’t (or maybe it could, but didn’t want to?). Therefore, a procedure to „improve” the fistula was planned. Improvement not to be confused with the creation of a new one. You are probably wondering who could have misunderstood this??? Well the person who performed the procedure for me XDDDDDDD. Long story short the job screwed up, 4 days later I had a catheter inserted. So January was heavy, oh heavy….

February 23′- first approach to excision of the kidney. Unfortunately unsuccessful, it turns out that I have a lesion in the ovary, which at this point prevents me from approaching the surgery.

March 23′- it turns out that it was a hemorrhagic cyst, which disappeared on its own. So, as usual, a lot of noise about nothing. FINALLY! We get rid of the kidney, and that gives the green light to prepare for the transplant. Of course, you have to wait a while for the body to recover from the operation….

April 23′-I am patiently waiting. In the meantime, my body is coming off immunosuppression and steroids after 18 years. And what follows? Hair loss at a tremendous rate. In addition, never having skin problems, suddenly catches AD (I guess, because I don’t have a diagnosis to this day :’)) 

May 23′- August 23′- months under the sign of research for the transplant. I dutifully thank every person who helped me find a faster date or in any way made it easier. Here, too, there was no shortage of adventures-at the time of the examination it turned out that I had a cyst in the sinus of my nose (at this stage I am no longer surprised that it happened to meXD). Along with the cyst, I lost 5 teeth. Fortunately, the whole thing was under anesthesia and then a single room. Almost a vacation, isn’t it?

September 23′ – once listed, you can start preparing for the family transplant. As you already know, the result is not very successful. September is also marked by low hemoglobin and drops in blood pressure. In addition, again a massive attack of skin disease. This time he gets a diagnosis of seborrheic dermatitis. Well life goes on, I patiently wait.

October 23′ to now-Dad finishes the tests and we are waiting for the application for cross grafting. I’m hoping we’ll be able to apply this year, but I wouldn’t despise a transplant right away either. Besides, some kind of massive attack on my body- dry cornea, again a strong recurrence of something on the skin, gingivitis, catheter problems. I just got used to the low blood pressure (80/50 XD). I still bravely endure everything, but there are moments of doubt.

To sum up. I wanted to show that the road to transplantation can be bumpy, paved with many surprises. Not all of them were positive, but each one gave me a very valuable experience. Well, gee, I scored a nice upgrade in pain threshold and mental toughness. Now I’m tasked with using it in other areas of my life (well, maybe not with the pain xd). Since I have to have dialysis anyway, why not get the most out of it?

Take care.
Olahola xo
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