Jacqsworld's Blog

Dialysis, Kidney Disease, Living life with Chronic illness

Archive for the tag “Organ donation”

Happy Anniversary Agent Mark Benford (My Kidney)

“And now, this is the sweetest and most glorious day that ever my eyes did see.    ” Donald Cargill

Today is definitely a big day for me. I am celebrating my one-year kidney transplant anniversary! I can’t believe how fast the year has gone by.  Sometimes it seems like it’s only been three months (Oh that’s right that was the other kidney surgery, that silly nephrectomy.) But here it is a year later and my new kidney is working as well as it did when I first got it!  My miracle continues.
Usually when I sit down to write a post for the blog, I know exactly what I want to say but for some reason, this one has been one of the hardest ones for me to write.  So many of you have followed me along my kidney journey, reading about dialysis, chronic pain, emotional issues associated with chronic illnesses, medication, the transplant and what organ donation can do to change someone’s life. I’ve met new friends and strengthened bonds with people (family and friends) who have been in my life since I was a kid. The support that I have received from everyone has been incredible and really helped make the things that I have gone through, so much easier. It’s true what they say about what a kind word can do for someone’s day.
Since starting this blog, I have received a lot of emails from dialysis patients and their families. Some asked questions about whether or not what they were going through and feeling was normal, or who to approach at their dialysis unit if they were having problems with techs or staff. I tried to answer those questions as best as I could and through follow-up emails, I feel like I helped them.
One of the emails that I received bothered me and made me question myself. It was from a dialysis patient who asked me if I was “always happy” because when reading my blog, it seemed like I was. He said that if I was, I wasn’t very realistic. That was a hard email for me to respond to because the things that he said seemed like he was coming from a very angry place. But it also made me wonder if other readers viewed me in the same way. So, let me be clear that I’m not always happy.  Although it’s been a year since my last dialysis, that experience is not something that a patient forgets and as I got closer to my kidney anniversary, some of those memories came back to me.

On my first day of dialysis, although I had gone through the dialysis education class they offered, when I saw the size of the needles and actually understood what dialysis would entail, my first thought was, “I don’t know if I can do this.” I remember being very close to cry and telling Doug that I wanted to go home. But I understood what the alternative was and I knew that I didn’t want that.

Dialysis wasn’t something that was new to me. I’ve had more family members who had to endure dialysis than I want to count. My mother, who was on dialysis, actually passed away about two weeks before I completed my first year of dialysis. I had dialysis the day after she died and I sat in the chair right next to the one she had passed out in the day before. I can’t tell you how hard those three and a half hours were for me.
In my response to that man who wrote to me, I told him that I’m not always happy. But I try to stay positive. It takes effort but I enjoy life and I have a lot of things to be positive about. Dialysis is a weird thing; it’s not an exact science. A patient can do everything that they are told to do and still experience a low blood pressure and pass out while on the machine. Or a tech can make a mistake when putting your needles in and instead of having a two needle run, you sit there your whole time with three needles in your arm.

No two patients will experience the same dialysis treatment. If I have ever written anything to make it seem as if dialysis is a “walk in the park,” I want to clear that up because I would not ever want to demean any patient’s experience.
One other thing I’d like to say about dialysis is that I learned so much about how resilient people can be. During my time on dialysis, I met amputees, cancer patients, college students, a couple of ninety year olds and people who would get totally wiped out from their treatments, get off the machine and go to work. I made friends with patients who suddenly disappeared. Most of the time it wasn’t because of their choice but sometimes it was. Patients get tired of dialysis and the side affects that go along with it and they make the decision to just stop.

Although that part of my kidney journey is over (and I hope that it is over for good) being realistic, I know that rejection is always a possibility.
I am now on a different journey, this one being a lot more fun. I am now attempting to figure out what the “dialysis-free” Jackie wants to do with this new phase of life. I have a list of things to explore that I’m always adding to.

You would think that I’d feel relaxed about the things that I am free to do now but there is anxiety and in trepidation. Some of this, I’m sure, is due to certain side affects from the anti-rejection drugs. But I also feel that after your life has been pretty much tied up for over five years, there’s a lot to figure out. I look forward to working through all that.
Now for the hard part…I’m not sure whether or not I should continue writing this blog. It feels like I’ve already written about the most interesting things in my life, up to now. I feel pretty proud that I’ve kept you all interested in reading this blog as long as I have. I thank you all for that because I really like blogging. As a matter of fact I have a couple of ideas for some other blogs. Some of those might be for the “rated R” age group and not health-related at all;-)

In the meantime, while I take some time to decide about this blog, I think I’d like to keep it open for a more interactive forum where readers can write about their experiences or ask questions about everything from kidney disease, chronic pain, organ donation and transplants.  I need to figure out if that’s possible on this website.

Again, all of you have been so wonderful to me, your support and love means more to me than you know; I wish my mother could see how happy I am and that she left me in the hands of such loving and caring people.

I’ll be celebrating tonight with dinner and my friend for life, Anne R.  All of you will be with me in spirit too!

* It’s really important to me thank Doug and Justin for being the most patient and understanding husband and son.  Anyone that has gone through any kind of chronic illness/condition knows that one minute you can feel fine and in that same day, you can feel horrible. That means that you can’t always be the kind of wife or mother or whatever your role is in your household that you want to be. Doug and Justin have always been there for me and never complained. You guys are Simply Awesome!

* Please continue to follow and support Anne on her kidney journey. Send her positive vibes and prayers.   She will soon be giving the gift of life to a complete stranger. Read all about it:  http://anne315.wordpress.com

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Two Kidneys, One Working – And That’s All You Need

I’d like to start this post off with a reminder that the Lansing Kidney Walk is this Sunday, June 12, 2011 at the Lugnut Stadium – check in begins at 12pm and the walk starts at 1:30pm. Although this is a great fund-raising event, it’s also a good reason to get out, have some fun and listen to some stories from dialysis patients, transplant recipients, amazing donors, their families and friends. I’ve been attending the kidney walk for years and each year I have come away from the event having met some of the most awe-inspiring people.  I’ll be there this year too…not sure if I’ll be physically ready to do the walk but I will be there to cheer my team on!

Those of you who read April’s blog know that I had surgery on April 26th to have my right kidney removed. There was a concern about a tumor or mass that was seen on a range of tests. There was a discussion about removing  the left kidney too, depending on the time it took to remove the right one.  Well it took longer in surgery than the surgeon originally thought  so the left one is still intact.  After the surgery,  the doctor told me that it would probably be a week to ten days before we’d find out whether or not the tumor was cancerous. Being the worrier that I am, I was very happy when  he called three days later with the good news that there was no cancer present.

That surgery was very hard on me both physically and emotionally. It’s tough to have two surgeries in a nine month span. In all honesty, the nephrectomy (kidney removal) was more painful for me than the kidney transplant, which is exactly what the surgeon told me to expect. You know the old saying, ” I wouldn’t wish ( fill in the blank)  on my worst enemy?” well that is exactly how I feel about that surgery.

It has now been  six weeks (the usual recovery period) to the day since the surgery. After having some issues with pain meds and fighting the flu during this period, I am beginning to feel more like myself. There’s still some soreness and low energy but I’m feeling almost recovered. As usual,  I’ve had some loving, patient and caring people who’ve  helped me get through these past six weeks –  my husband and son being at the top of the list.  I can get pretty cranky when I’m sick and I’m sure they both had to hold their tongues and roll their eyes at me many times – I’m sure because I caught certain looks that passed between them.
I really want you all to know that my new kidney continues to work like the Energizer bunny; it keeps going and going and…sometimes I can’t believe that this little “used” organ works like it has always been in my body. Thank God my donor and donor family believed in the importance of organ donation!

So now with the obstacle of that surgery over and done with, I’m ready to enjoy the rest of the summer and move on to the next thing…whatever that will be for me.

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