Jacqsworld's Blog

Dialysis, Kidney Disease, Living life with Chronic illness

The Rest of the Story

The Rest of the Story

I was in the hospital for four days. Doesn’t that seem fast to have a whole organ put in your body and then have them send you home three days later? I was surprised too. I wasn’t sure I was ready to go home. I was still overwhelmed with how fast everything went,  from the phone call to the discharge day. I had been given so much transplant education and even quizzed on it during those four days. The amount of “anti rejection” medications scared me. I had a chart so I knew when to take them and what they were for but I just wanted to make sure I had it altogether.

I was assured by teams of people (including a social worker) that I was ready.They all made things as easy as they could for me. I joined the “Transplant Pharmacy, “who equipped me with a U of M duffel bag, filled with ALL my medications.They even included a blood pressure monitor, a thermometer, and every item that I would be using. The pharmacy will also ship my medications to me every month.

And so…I went home.

I have been doing extremely well. I am not saying it’s been easy. The anti-rejection medications really kick my butt on a regular basis. There’s so many pills and so many side effects. One of the pills tends to make people moody and emotional – Doug said, “yes, we need more of that in the house.”

A couple of the other medications make me unbelievably nauseous. As time goes on the medications will be tapered off to a life-time maintenance. I also have to go to the U of M Hospital once a week for six weeks and to a lab here in Lansing, once a week. Those things will change too.

But I can’t complain because I got a kidney! I got a kidney.

There’s so much more that I want to say about this experience because it’s on-going but from a different perspective now. This morning I woke up at 5am – still on that dialysis schedule:-)

As I sat at my computer with the house all quiet, I started writing what I guess you would call a “thank you” letter to my donor’s family. Thank you doesn’t seem like it’s nearly enough though and there are strict guidelines that I have to follow when writing to them.

I finished the letter, very mindful that two weeks ago I got a kidney and they lost a family member. I told them how much I appreciated the selfless gift that I received and what this kidney means to me and my family. I also wrote that I hoped my letter brings them some comfort. I asked them if (when and if,  they felt it appropriate) they could write to me and tell me about the donor.

The letter doesn’t go directly to the family. It goes to a group called,”Gift of Life.” The group then forwards the letter on to the family. If they choose to write to me, it goes through the same process. The group does not allow you to tell the family any personal information like your full Name, Address, City or State. I could only sign my first name. I think that changes when both sides decide they want to communicate on a regular basis.

I hope that I do hear from them. I’d love to find out what my donor’s hobbies were, what kinds of things made he/she laugh, what they felt was special about their family member. I already know what I think is special about the person.  He/She…saved my life.

So there won’t be a “to be continued…” because you all know the rest of the story. I would really like it if you all who have been a part of my journey – by praying for me, showing your support and reading this blog, would comment with questions for me. I think that would make a good next blog.

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12 thoughts on “The Rest of the Story

  1. Robyn on said:

    Jackie I really appreciate your blogs and sharing your feelings with us on your journey. Yes, I can’t believe you went home in 4 days! That does seem soooo fast. I hope your side effects taper off soon. Don’t forget if you need anything, just call.

    Love ya,

    Robyn

  2. Do continue your story because a lot of people will enjoy reading about your recovery and new life. I am sure you are helping people with kidney disease–and the rest of us!

    • I went to my “OLD” dialysis unit today and I got such a wonderful welcome. I even got a chance to talk to a patient – and this wouldn’t have been one of my days. The patient wanted to ask me tons of questions about the transplant experience.

      • WONDERFUL! I bet the tears of joy were flowing from all! Except maybe one person we won’t mention ; )

  3. LOL, SHE wasn’t there, which made the visit even nicer!

  4. Cathy Robinson on said:

    A absolutely wonderful story. I really and truly enjoy reading any writings you have. It makes it that more special that it is your story. I do have a question or two if you don’t mind.
    1) Since this was so unexpected, was this because you were on the regular donor list or was this expediated because of the fact that Anne was donating a kidney to someone else so you would be able to get one from someone else?
    2) Since this was a cadaver kidney, does Anne not donate a kidney now?
    3) Was it part of the plan that you get a live donor OR cadaver donor?

    I am just trying to understand that if Anne signed up to donate does that insure you to get a live donor or either way. I was just curious.
    Where does this put Anne now?

    Ok, I could go on, but maybe the answer for this would answer my curiousities. I know someone here that was going to donate a kidney to her sister and the night before the transplant, her sister was called and was given a cadaver kidney and she didn’t end up donating at that time. I can’t believe you went home after 4 days for a transplant either. What great technology we have these days.

    Love ya and stay strong,
    Cathy

    • Cathy, excellent questions! When Chad called me, one reason why I had no idea who he was is because he was Anne’s coordinator through the transplant program. I had a different coordinator. So after the surgery, I asked Anne to contact him to find out what exactly happened. Believe me, I was just happy to get the kidney but I also wondered if my name just came up with the matching cadaver kidney or if my name had been expedited because of Anne’s involvement.

      I wanted her to check with Chad because if it happened that my name just came up when it did on the list, it held certain ramifications for Anne – specifically that she wouldn’t have to go through a painful surgery and a recovery period. It took a few days for Chad to get back with Anne and he told her that he believed my name came up at the time the kidney that matched me, was available.

      I should say that I don’t believe in coincidences. There are three tests that a kidney patient has to have done every year and I had only had one of them this year. It was one of the most important ones but my appointments for the other two were months away. My name had also been on the transplant team for a long time and I had only had communication with my coordinator when she called to remind me of getting those tests completed. I believe that things started moving for me, when Anne got involved.

      Anyway, when Anne spoke with his Chad, he told her that since the transplant happened the way that it did, she wasn’t under any obligation to donate her kidney. To be honest, I was relieved. I love Anne and with anyone you love, you don’t want that person to have to go through any pain. After going through my surgery and being around other patients who had received transplants and given organs, I knew people where experiencing quite a bit of pain.

      But, as a testament to who Anne is, she told me (and Chad) that she still wanted to go through with it. She explained to me that she recognized the need out there for organ donations. She saw how much it helped me…how it saved my life. And she wanted to help someone, the way someone helped me. She and I talked about it for a long time and I realized even more, just how incredibly special Anne is.

      Anne is now going through all the testing and everything she had to go through when she was preparing to do the two-way paired kidney with me…but now for someone else. I’m so proud of her and the person I’ve always known her to be.

      And in case people haven’t been reading her blog…this is a great time to start because she is writing about her new experience.

      * http://anne315.wordpress.com

  5. Robyn on said:

    Anne sounds as amazing as you are Jackie! I’m hoping to meet her one day!

  6. John Cafasso on said:

    Congratulations: Appreciate your comments and experience. I was transplanted on 7/27/10 and am doing well so far. My selfless niece was my donor. I appreciate you sharing your experience with the side effects of the medications that we now have to take. That has been my biggest challenge but each day it seems to get better. Hope it is that way for you as well.

    John

    • Congratulations to you too! Your niece sounds like such a special person. I’m glad you’re doing well too and you’re right about the medications…each day it does seem to get better. I’m so happy you wrote…it’s good to hear from another transplant patient and you had your transplant six days after I had mine.
      I hope things continue to go well for you and that you get stronger and feel better every day. Please keep in touch and let me know how you’re doing!

      Jackie

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