Jacqsworld's Blog

Dialysis, Kidney Disease, Living life with Chronic illness

Archive for the category “Support System”

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!


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.

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.


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)

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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