Blog, My experience of PKD, Transplant

Meeting with my donor and the transplant team

This week, I went to my last hospital appointment before my kidney transplant, which will be on December 1st! I’m warning you, it was a whole day filled with information, from 8am to 2.30pm. I think it’s relevant that I tell you about it since we arrive in the last stretch before the transplant! ♥ It’s long, but it gives you an idea of what’s coming!

Before I tell you about my big day, the meeting with the donor!

But before we talk about my big day, the topic that really interests you: the day before this appointment, I met the person who will give me a kidney!

I had never met them; we had only spoken to each other through Messenger. We had organized a dinner together with Thierry, my spouse, and it was very pleasant! It was a bit weird at first; What do we say to someone who is going to save your life? As dinner progressed, we became more comfortable and found several things in common. They are really friendly!

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Photo by Johannes Plenio on Pexels.com

I’m really happy that they are someone I share many values with. I know it doesn’t change anything of the donation, but it makes it easier to accept, for some deep reason that escapes me.

Last pre-transplant evaluation

We arrived at 8am at the Hôpital Maisonneuve-Rosemont, in Montreal, for the last day of pre-transplant evaluation. Thierry and I slept at a family member’s house the night before so as not to have to get up too early (we live 1h30 from the hospital).

I first met with the transplant nurse, who gave me blood tests.

Meeting with the surgeon

We then met the surgeon who will operate on me. He checked that there was room to put the graft – the donor’s kidney – in my abdomen.

kidney warrior compares with normal kidney

By the way, I’m lucky about this, although my kidneys are bigger due to Polycystic Kidney Disease (PKD), mine are still resonable in size and do not cause me too much discomfort. Some people who have my disease need a nephrectomy (surgery to have a kidney removed) before they can receive a transplant. From what I understand, nephrectomy carries more risks than transplantation because of the size of our kidneys. Indeed, a normal kidney is the size of a closed fist, while a polycystic kidney can be bigger than an American football!

The surgeon then described to us how the transplant will go. They will start by opening the donor. When they are ready, another team in another room will open me up. They will remove the donor’s kidney and clean it, then donate it to my team and transplant it to me. The goal is to leave the kidney outside of someone for as little time as possible to preserve its quality. I will then wake up in the recovery room, be confused for an hour, and then be sent to my room for the next 7-15 days.

Medical examinations

I then went for two medical exams to check if my body will tolerate the transplant: a chest X-ray and an electrocardiogram (ECG). While waiting for the ECG, I started to feel really bad, to the point where normally I would have gone to bed if I was at home. I couldn’t even read… But I had to wait and endure.

I did the exams and came back for a meeting with my transplant nurse, who is fabulous by the way. While waiting for him in the small room where they put me, I really considered lying on the examination table to sleep a little, to recover. But I was too embarrassed to do it haha, I finally leaned on the second chair to feel a little better. At home, I’m sure I would have slept at least an hour immediately because I felt so bad!

Meeting with the transplant nurse

With the nurse, we talked about the unfolding of the next few weeks. That’s when I learned that I was going to start immunosuppressive drugs a few weeks before the transplant. What we want is to avoid the rejection of the graft, so we prepare my body accordingly!

We really talked about a lot of things, it would be too long to write everything here. I’m starting the anti-rejection meds right away, and have to take them at 7:30 and 19:30. So we have changed our meal schedule at home: one of the drugs loses up to 30% effectiveness if taken with food! So I have to eat one hour after taking this medication, or take the medication two hours after eating food. As I have to take them every 12 hours, it limits the possibilities.

In addition to complete isolation for two weeks before the operation, we are recommended to limit contact with people as much as possible one month after the transplant. It involves a quiet Christmas time and several weeks without seeing my boyfriend’s daughter 🙁

In addition, I should be able to drive 6-8 weeks after the operation, and not the 3 months I thought! Good! I will have a lot of appointments in Montreal this year and my boyfriend can’t always miss work for me!

I have two covid tests to pass before the operation: one on the morning of the 17th and one on November 29th.

Finally, a meeting with the nephrologist, and one with the pharmacist

I had a check-up that went well with the nephrologist. It has been determined that given the covid tests I have to take, it is better for me to wait before having my 5th dose of covid vaccine. They want to prevent me from testing positive just because of the vaccine, so I will receive it after the transplant! I wish I had the new vaccine without being immunosuppressed; Vaccines will be less effective for me after the transplant.

With the pharmacist, we talked about medication. There can be significant side effects with immunosuppressants. I have been taking them now since Monday morning, November 7th, and I don’t feel any of them! Whew! I didn’t want to start shaking (about half of the patients experience it) or feel more nauseated! I’m keeping my fingers crossed that it will stay that way, but maybe my dose now is too small for me to get them? There is also a risk that my face will become rounder; it is called a lunar face. That, too, I hope to skip.

Next steps?

I am very much in the preparations for our isolation. Making sure we have everything we need for a month and a half. Make sure my father, for whom I am the primary caregiver, is well taken care of. And I rest as much as possible during the day; I feel like I’m constantly napping!

We begin the two-week isolation on November 17, so next week. We are almost there!

And finally, I will enter the hospital on November 30 at 10am for the operation the next morning. No idea what I’m going to do all day! In any case, I’m going to bring a book so it’s okay:)

What an adventure!

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