Long Time No Blog – An Update

 

  

 “Man never made any material as resilient as the human spirit.”   Bern Williams

It’s been a long time since I’ve posted to my blog so I wanted to post a quick update. I’ve had my kidney for two and a half years and “he’s” still doing well. That’s not to say that I haven’t had health problems. I am still having some issues with side-affects from the anti-rejection drugs and how they interact with each other. Anti-rejection drugs compromise your immune system and it seems like every other week I’m fighting a cold, a bug or flu-like symptoms. Fortunately for me, I’ve been able to get through them without any trips to the hospital or any hospital stays and that is a very BIG DEAL. Overall, I am doing well and still feeling incredibly blessed to have been given a gift that has improved my quality of life. Having the transplant continues to change my life in many ways. One of those ways is living life with a purpose even more so than before and doing what I can to make a difference in someone else’s life.

 I think that this blog has helped people who have gone through or are going through their own health situations. I’ve received emails from people who are on dialysis and have questions that sometimes only another person who has experienced the same thing can answer. I’ve also received email from other transplant patients and we’ve shared our thoughts on everything from medications to fear of possible kidney rejection.

 Recently I received an email from someone who came across my blog and wrote to me about her own health issues. After reading her email, I shook my head and smiled. It’s just amazing to me when I read or hear about the struggles that people go through and how resilient, determined and the amount of fortitude they possess. This woman, Heather, is a mesothelioma survivor and her story is one of inspiration if I’ve ever read one. Through her battle, Heather has created a holiday called, “Lungleavin Day.” From her email to me: “Lungleavin Day is a celebration of life and facing your fears.” Lungleavin Day is also a way that Heather does fundraising  for mesothelioma research.  I am including a link to Heather’s blog and I hope that you check it out to learn more about “Lungleavin Day,” mesothelioma and Heather’s story.

 http://mesothelioma.com/blog/authors/heather/fear.htm

 

 

 

 

Anne’s Big Day!

In case you haven’t been following Anne R’s blog, you should type your way right over there and give her your well wishes, prayers and love. On August 12, 2011 she will be donating her kidney. This is something that Anne has been waiting to do for quite a while and it is “finally” happening, this Friday.
All of you who know Anne, or have read about Anne from my blog, know that she is an amazing person and is about to give the gift of life to someone. She will be changing a dialysis patient’s life and it will start with freeing that person from dialysis.
It’s very rare to know someone who is as selfless as Anne and I can’t tell you how proud I am of her and how proud I am to call her my friend. Anne and her family have been a part of my life for so long, I consider them my family too. And believe me,  Jan, John, Mary & Tom are just as loving and caring as Anne.
So please stop by my “sister/friend’s” blog:  http://anne315.wordpress.com and send her well wishes, positive thoughts and prayers for her surgery. It would also be nice if you all would extend those prayers to the kidney patient who will be receiving Anne’s kidney and just for good measure, you can also send out prayers to her surgeon (who is the same wonderful surgeon that did my transplant). There can never be too many prayers out there.

* Love you Anne, Scarlet Crustacean on me when you’re up to it!

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

My Friend Anne

I just wanted to write a quick blog post asking my readers to please drop by Anne’s blog to read her latest post.  Without giving her “good news” away, she’s the only person I know who has been looking forward to something that most people wouldn’t be.

 

http://anne315.wordpress.com/2011/06/21/yippee-skippy-a-kidney-date/

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.

1 Kidney, 2 kidneys…3 Kidneys???

To the readers of my blog I wanted to share the news that on April 25th I am having surgery to have one and possibly both of my old kidneys removed. My new kidney is still working GREAT and I couldn’t be happier about that. I have been asked (by family and friends) why the doctor doesn’t take out the old kidneys when they do the transplant. I wondered the same thing myself. The answer to that question is that they don’t usually remove them because it’s a more invasive surgery. They don’t even put the new kidney in the same place where the old ones are located. My new kidney is actually located in the front lower part of my body.

The reason that I am having the kidney(s) removed is that during a regular visit with my transplant doctor,  she felt that my blood pressure was higher than it should have been, especially since the transplant. So she scheduled an ultrasound to make sure there wasn’t a “kink” in any of my arteries that could cause the blood pressure to be high. During that ultrasound they found that there was something “suspicious” on my right kidney and I was referred to a urologist. After a few more tests (including an MRI) the radiologist came to the conclusion that there was a small mass on the kidney and there was a chance that the suspicious small mass could be cancerous. His recommendation was to have the kidney removed. The urologist and my post-transplant doctor agreed. They were both concerned about kidney cancer, which I was told that there was a 50/50 possibility. Neither doctor wanted to take a “wait and watch it” attitude and of course, neither did I.

My husband and I met with the surgeon twice after the initial visit. We  have faith and confidence in him.  He put our minds at ease when he told us that once he takes the kidney out, if it is cancerous, the cancer would be gone because it is isolated on that kidney. He also suggested that since I was going to have the surgery anyway I should think about getting the left kidney taken out too. I wasn’t sure how I felt about that. To get both kidneys removed would be a surgery that would last between five and six hours and I didn’t like the idea of being under anesthesia for that long. After explaining that to him, he said that my concerns were understandable and we agreed that if he could take both kidneys out in a four-hour window that’s what he would do.

So that’s what I will be doing early Monday morning when most of you are getting ready for work or drinking your first cup of coffee. By the way,  this type of surgery is called a “nefrectomy.”  The hospital stay is usually 2 – 3 days and the recovery period is usually 6 weeks. I’m nervous but ready for the surgery. I don’t want anything in my body that doesn’t work and that could possibly harm my new kidney.  I can honestly say that after thinking this whole thing through, I am at peace with it. My new kidney has truly been a godsend and I feel wonderful! After I had my transplant I remember feeling that the journey I’ve been on wasn’t over. This surgery is just another step on that  journey.

You all know that I believe in the power of prayer. So I would appreciate any and all prayers you would like to send my way.

Speaking of journeys, my friend and fellow blogger Anne R. has been going through a lot of twists and turns of her own in her efforts to donate her kidney. To read where she’s at on her journey, please visit her blog at: http://www.anne315.wordpress.com/

* June 12, 2011 is the Lansing Kidney Walk – Cooley Law School Stadium – Registration starts at 12pm & the Walk begins at 1:30pm

* If you’re thinking about donating to a cause this year – besides your own of course – please consider donating to the National Kidney Foundation or sponsor my group, “Freda’s Kids,” at the Kidney Walk.

* Please visit my personal Kidney Walk page where you can learn more about Kidney disease and even donate online:

http://donate.kidney.org/site/TR/Walk/Michigan?px=1124734&pg=personal&fr_id=3391

* It is tax-deductible

Miracles Everywhere

I can’t believe that it’s been eight months today since my transplant! It’s true what people say; time really does fly. I remember when other transplant patients would tell me the length of time that they had their kidneys and I would say that I couldn’t wait until I could say I had mine for three months and then six months and here I am four months away from my one year mark.

My new kidney has been working great and I have gotten to the point where I have my anti-rejection medications and dosage times memorized. I’ve also been able to tolerant them and the side effects that go along with them, much better. If you all remember that was a very difficult challenge for me. Now it has become a habit. I am still battling the Prednisone (steroid) but I realize that will be a life-long struggle.

Those of you who know me, know that my transplant and the journey leading up to it, as a miracle. I believe in miracles and I don’t think that they have to necessarily come into your life as a BIG occurrence; sometimes they can sneak up on you.

I also believe that regular, everyday people create and facilitate miracles – I’ve seen proof of it and I’m sure if you think about it, you’ll realize you’ve seen it too. Whenever I am fortunate enough to experience, learn about or hear about someone who has created a miracle, I want to share it with others.

Recently I have been reading about miracles in the form of “multiple organ donations.”

A shining example of multiple organ donation(s) is Christina-Taylor Green, the 9-year-old girl killed in the tragic shootings in Tucson. Although I don’t know what specific organs were donated, I have read that Christina’s corneas were used to save the eyesight of two children. Christina was a true blessing in life and she’s an angel in heaven now.

Not being a sports fan, I had never heard of a young man named Chris Henry who was a receiver for the Cincinnati Bengals. On Dec. 16, 2009, Chris suffered an accident and passed away. He hadn’t filled out a donor card and from the things I’ve read, had never voiced an opinion about organ donation. However his mother, Carolyn Glaspy made a heart-wrenching decision to donate his organs. She said that Chris had always been a “giver” and because of her mother’s decision, his organs – his lungs, kidneys, heart, pancreas and liver saved the lives of six people. Chris is definitely a MVP.

There is a reader of this blog who has become a friend of mine. “VC” is the wife and caregiver of a dialysis patient in a nearby city. Like so many caregivers, VC has her own health issues but she assists her husband with his dialysis journey in every way she can. In November I received an email from VC just checking in with me to see how I was doing. We emailed each other back and forth that night and in the course of the emails, I found another “every day” miracle in her.

November was a hard month for VC and her husband, “B”. Not only was she dealing with her own health issues, her husband was in and out of the hospital dealing with kidney related difficulties and an ulcer. During that month her brother also passed away. Knowing the importance of organ donations, VC sat with her siblings and discussed the decision to donate all of her brother’s “usable” organs.

As you can imagine, it was one of the hardest decisions they had to make as a family but it helped that because of what her husband, B was/is going through VC convinced them to do the donation. She told her siblings that, “if his organs were able to be donated that we should do it so someone else would not have to depend on the machine and it would give them a better quality of life.”

Even during one of the most trying times in her life, VC was thinking about how she could help someone else – or in this case, more than one person. During our emails she shared something with me that made me think about aspects of donations, one that I hadn’t given much thought to:

“We even donated his hands. We found out that there was a veteran that was a perfect match for his hands but unfortunately the soldier couldn’t have that transplant because he had an infection.”

VC and her family created miracles. You won’t read about them in the newspaper or see them on CNN and if you walked past them on the street, you wouldn’t know that you just walked past someone who saved lives. VC and people like her inspire me and strengthen my belief in miracles every day.

*Reminders:

March is National Kidney Month
April is Organ Donor Awareness Month
June 12 is the 2011 Kidney Walk – Cooley Law School Stadium (1:30pm)

If you’re thinking about donating to a cause this year – besides your own of course – please consider donating to the National Kidney Foundation or sponsor my group, “Freda’s Kids,” for the Kidney Walk on June 12th

(It is tax-deductible)

2010 in review

The stats helper monkeys at WordPress.com mulled over how this blog did in 2010, and here’s a high level summary of its overall blog health:

The Blog-Health-o-Meter™ reads Wow.

Crunchy numbers

A helper monkey made this abstract painting, inspired by your stats.

A Boeing 747-400 passenger jet can hold 416 passengers. This blog was viewed about 1,800 times in 2010. That’s about 4 full 747s.

 

In 2010, there were 21 new posts, growing the total archive of this blog to 22 posts. There were 2 pictures uploaded, taking up a total of 562kb.

The busiest day of the year was July 30th with 76 views. The most popular post that day was Mel Gibson who???.

Where did they come from?

The top referring sites in 2010 were facebook.com, mail.yahoo.com, anne315.wordpress.com, obama-scandal-exposed.co.cc, and digg.com.

Some visitors came searching, mostly for http://www.jacqsworld@wordpress.com, jacqsworld.wordpress.com, and “potter park zoo”.

Attractions in 2010

These are the posts and pages that got the most views in 2010.

1

Mel Gibson who??? July 2010
14 comments

2

The Gift of Life March 2010
2 comments

3

Guilty As Charged May 2010
12 comments

4

My Story September 2009

5

You’re Not The Boss Of Me May 2010
5 comments

Tis The Season For Giving

We are fast approaching the holiday season, specifically two holidays that are all about giving. So I wanted to share with those of you who have followed my blog, that my dear, wonderful friend, Anne, has received a call from her coordinator at the University of Michigan Hospital about donating her kidney!!! It’s a call that Anne has been waiting for and a call that will lead to the gift of life for a dialysis patient.
There isn’t a date set yet for the surgery but whether it be during the holiday season or into the new year…someone out there will consider their new kidney the best Thanksgiving, Christmas or New Year’s present that they’ve ever received!
Please pray and send out good positive wishes for Anne. She’s one of the most selfless, altruistic people that I’ve ever met and I’m proud to know and love her. In case you haven’t checked out her blog yet, please do so. It’s located at: http://anne315.wordpress.com

3 Month Milestone!

I wish there was a way to throw “Internet confetti” because I’d throw handfuls of it to all of you reading the blog. I have had my new kidney three months now and it’s working, “very well,” (a direct quote from my doctor). These three months have been full of activity – doctor’s appointments and a few surprises.

For those of you who have been following the blog, you know that I had some serious problems adjusting to the anti-rejection medications. For the first two or three weeks, I had little or no appetite and had insomnia like I invented it. Now, thanks to the Prednisone, I have my appetite (and a couple of other people’s) back and also thanks again to the Prednisone, I’‘m still not sleeping much but I do catch a couple of hours here and there.

Also in terms of medication, a few more of my mine have been taken away and/or have been reduced, which makes me very happy. I think I’m getting closer to what will eventually be my “maintenance dosages” – the meds that I will be on for the rest of my life. Those maintenance drugs will be adjusted (as need be) based on blood work results.

This three-month recovery period has been like a roller coaster ride and surprise party at the same time. You’ve all read about some of my ups and downs while I’ve been on this journey but the surprises didn’t bring smiles to my face. Let me explain: The first surprise was the sudden appearance of what my son lovingly called,  “my peach fuzz.’ I called it a mustache. The day I noticed it in the mirror, I had to look twice to see if I was really seeing what I was seeing. So I guess it really was more of a peach fuzz thing as my son said but since I wasn’t expecting it…surprise! I was able to take care of that pretty easily though and so far it has not returned.

My next surprise wasn’t so easy to take care of and really isn’t within my control, which is difficult for someone like me, who tends to be a little on the control freak side.  Surprise number two was the return of my “monthly visitor,” who had stopped visiting a year or so after I started dialysis!  To be honest, I hadn’t missed my “friend” and was more shocked than surprised by the visit. But I had been told that it could return and it did. Isn’t it amazing what a new organ can do to a body?

Another major change that has happened is that my visits to the University of Michigan Hospital have now been reduced from once a week to once every three months. That’s a pretty big deal for us because when I was first told that we’d have to make that trip once a week for a while, all I could thing of was the expense associated with that and hoping that I could get early morning appointments so that my husband would be able to make it to work on time. I’d like to mention again how blessed I am to have family and friends who have offered to drive me to any and all of my appointments (especially Anne & Ann).

As I continue to go through the recovery period, I’m learning a lot about myself. For those of you who know me, you know that I love to read and I love the Internet. I usually research everything that peaks my interest and although that can be a good skill to have, it can also be something that causes a lot of anxiety. One day I spent too much time on a website reading about other kidney transplant patients and problems they had that caused them to lose their new kidneys.

Needless to say, I let emotion take over fact and logic. I knew that I had excellent blood work results from the moment I received the kidney. I knew that my doctors were more than pleased with my recovery and I also knew that I felt better than I had in years. But I let other people’s stories scare me and stress me out. Fortunately I have very wise and supportive people in my life, one of them being my Aunt Claudia who told me, “Jackie, those people aren’t you” and my doctor, who said, “ Jackie, stop reading those things, you don’t know if those people did what they were supposed to do to take care of their kidneys.”

It always helps to have people in your life that can remind you that you are as unique as the gifts that are given to you. It’s also important to listen when those people in your life give you insight. So I listened and now I’m not as quick to compare everyone’s story to my own. I still read blogs and leave comments being as encouraging and positive as I can. I know that it helps me when people read my blog and leave the same kinds of comments.

Three months is a milestone for me but I’ll be the first to admit that it hasn’t all been easy. It STILL has all been worth it though. I don’t know what the next three months will bring; I’m still working at what to do with my new life. It’s exciting and scary at the same time. I don’t want to waste the gift and the opportunity that I’ve been given – I do know that writing makes me feel like I am using one of my gifts to help others.

I can tell you all that I hope that at some point in the next three months (or sooner) I hear from my donor’s family and I hope that they received some comfort from the letter that I wrote them, thanking them for the generous donation I received from their family member. I also hope that during the next three months, I continue to stay healthy and get stronger with each passing day. Of course I’ll continue to keep you all updated in future posts.

* Please continue to visit and read Anne Rau’s blog at:    http://anne315.wordpress.com/

Anne  is waiting to hear when she will donate a kidney to a patient that needs one. Anne is an altruistic donor – donating selflessly to a complete stranger because she understands the need that is out there. For those of you who don’t know Anne, she is a smart, clever writer whose blog about being on the other end of organ donation is very interesting.

**Interesting fact:

One bit of information that my doctor mentioned to me at my last visit is that there is a “National Transplantation Pregnancy Registry” out there.  I found it remarkable that after having transplants, some women actually got pregnant and carried babies successfully. How wonderful that women who had dreams of motherhood,  after being on  dialysis and having  transplants, could have their dreams realized.