Jacqsworld's Blog

Dialysis, Kidney Disease, Living life with Chronic illness

Archive for the tag “Conditions and Diseases”

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


Yes Jackie, There is a Santa Claus

It seems like it’s been a long time since I last blogged but it was only last month. I’ve received several email messages asking about my health and those messages really let me see the power of blogging and how much people care. First let me say that with the energy that I now have due to the new kidney, I have been shopping for the holiday and decorating my purple Christmas tree. I’ve also been working on my jewelry and trying some other crafts that I’ve always been interested in. In addition, there’s been lots of cooking and cleaning – since having that new energy no longer gives me an excuse not too:-) I have (of course) been doing my weekly blood work and making the adjustments that I need to make to keep my new kidney, healthy. I’m still dealing with the side effects of some of the anti-rejection medications but it is getting easier.

The biggest complaint or problem that I’ve had since I got the kidney almost five months ago, is an issue with my blood pressure being higher than my doctor would like for it to be. She says that after a kidney transplant, patients usually reduce the amount of blood pressure medication(s) that they have been on. So in the past few weeks I have had an Ultrasound and an MRI. The MRI shows that there may be a problem with one of my “native” kidneys and it may have to be removed. Initially that news was upsetting to me but I’m fine with it now. The old kidney doesn’t work. My new kidney is working great. So if removing the old one will make my blood pressure better, I’m all for it.

As I mentioned, I’ve received emails from some readers that follow the blog. Some people have written asking me about Anne and what is going on with her. Anne has undergone a second round of blood work. Last month she received a call from her coordinator at U of M Hospital and was told that they had a possible match. Unfortunately at that time, she was told that it didn’t look like it was going to work out. But she received another call last week and it may have a more positive outcome this time. Anne has recently completed the blood work (again) and we’re all praying that someone will have a very Happy New Year! Please visit her blog and read about her “adventures.”  http://anne315.wordpress.com

 Christmas is fast approaching and I was thinking about all the gifts that I’ve already received. Most of them were due to the new kidney. Just to name a few of them and in no particular order: Five months of no dialysis. No fluid restrictions. Spending more time with my family and friends. Being completely overwhelmed by the love and support that everyone in my life shows me and has always shown me. The people who have taken the time to read my blog and respond and even share their own stories. Being able to really feel good, after periods of feeling so sick. The list goes on and on and there is not one material thing on it because when it comes to health, happiness and love, it’s never about the material things.

All of you who are regular readers of my blog know that I am a firm believer in prayer and that  it works. I want to share with you something that comes to my mind often. My son Justin really struggled with my mother’s death (five years ago this month) and after she passed away he told me that he always prayed for two things; that his grandma wouldn’t die and that I would only have the one graft while I was on dialysis and that it worked until I got a transplant. He and I talked about my mom’s death and we know that we don’t understand why certain things happen the way they do or when they do. We both reached a point where we found a sense of peace and we know that my mom is at peace.

 And…In the five years and seven months that I was on dialysis, I only had the one graft.

I hope that everyone has a happy, safe and healthy holiday (whatever holiday you celebrate). Please take time to appreciate your loved ones and be grateful for what you have because always remember that there are people out there who have less.

*If you can, try to donate to a Cause that is close to your heart. You can’t give too little or too much!

Merry Christmas –  Jackie

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