More information

For more information about April, please go to:
aprilgillespie.blogspot.com

Post-Transplant Picture

Here we are on Friday, Feb. 26 - 12 days after discharge (13 days for April.) We're feeling better and healing nicely.

Two week anniversary

Here we are at 2 weeks post transplant already! Still doing well. April is feeling great and I'm feeling very good. I'm still a little sore in spots. We have enjoyed having the time together, although it is hardly a vacation. But it will be nice to be back to my regular routine as well. I'm easing back into work - I took call yesterday and will be on call again Friday and the weekend. April will be staying in Houston for a few more weeks of follow-up. Being apart will be difficult, but we've been through worse. April can't wait to start working again, but that is still a few months off. Not much else to report today. -Rob

Day 9..still going strong

April had another follow-up visit yesterday and her labs continue to look good. The nephrologist was very happy with the results and we were too.

The flower bouquet is one I made for April so she would have some flowers in her hospital room. They are all artificial, since new transplant patients cannot have live plants or flowers. I'm impressed with how real the silk flowers can look. A couple of nurses, and even April herself, got a little excited until I reassured them they were fake.

This paragraph will only make sense to you if you are a kidney or medical person. April is having a field day eating phosphorus with reckless abandon, even though she still instinctively reaches for a binder each time. She has dropped 17 pounds [update: no, make that 24] of water weight since transplant (where did put all that fluid?) And that's without a drop of diuretic! She is eating like crazy to gain lean body mass. I like this diet - eat all you want and lose 17 pounds in a week. I don't think it will work for me, although I have lost 8 pounds, another good reason to be a kidney donor. (The kidney only accounts for about 1/4-1/3 pound of that.)

Nothing else to report on the Western front tonight. -Rob

One week anniversary

Hi Everyone,
Finally a note from the transplant recipient herself. Well today I am a week post transplant and things are going fabuously with me. Rob and I continue to improve on a daily basis. But he is right when he says that I am ready to run a marathon. I have never felt better, thanks to his wonderful gift of a great kidney. My labs and energy level continue to amaze me on a daily basis. They told me that I would have a down time of decreased energy and it has not happened, so I am thankful for that. But my heart has never felt more over filled with love and support, not only from my husband but from all of you. As many of you, I am also an oncology/bone marrow transplant nurse. Therefore now I have a very different understanding of the gift of life and second chances at that life, then before when I was only a nurse and not a recipient too. Many people do not understand that kidney transplantation is not a cure, just the best form of treatment we have for end stage kidney disease, and we have to do everything possible to take care of this precious gift we have received. No less mine was from my loving husband and soulmate Rob. So many people have posed the question of am I going to be diligent about my meds and transplant care, and the answer is definitely yes. Because to me transplantation is the greatest gift from someone and it should never be taken for granted. Just because you feel so good does not mean that you are cured or can stop taking your medicines or seeing your doctors. So on that note we will update you tomorrow after I have my clinic follow up with the wonderful nephrology group that I am seeing here in Houston. May all of you have great evening and as always you are in our thoughts and hearts.

-April

Rob says...
I can't say it better than her but it certainly has filled my heart with joy to see April looking and feeling so good. Today is our "one week anniversary" and in that short time we have seen dramatic changes in her energy, skin tone, muscle tone and just general joie de vivre. One kidney was a very small price to make all that happen. Those of you who thought April was a whirlwind of energy before...oh boy...I am in trouble...
I'll share a funny exchange from our last clinic visit:

Doctor: "What time did you take your Prograf today?"
April: "At 7:09."
Doctor: "Are you sure it wasn't 7:08 or 7:10?"

I don't think they are accustomed to people being so punctual! But the nephrology group here is fantastic. They are all such nice people and they are taking great care of April.
I'm doing well too. I still have some trouble with pain and nausea, but I'm getting more flexible. The only thing that really gives me trouble now is putting on socks or tying my shoes. Hooray for clogs! The steri-strips are not anywhere close to falling off. I expect most will still be in place at my retirement party.
Thanks for all the love. We feel it.
-Rob

Happy Valentine's Day!

How appropriate I am getting out on Valentine's day! I feel much better today. I have almost no pain - just a tiny bit of burning occasionally on my umbilical incision. My appetite is back and all systems are working properly. You have probably learned more than you ever wanted to know about my bodily functions over the last few days, but I wanted to give you a straight and accurate first-hand account of kidney donation, since we do not normally see it from this perpective. I still have a little bit of trouble getting out of bed or bending over. It hurts when I flex my waist.

Everyone at the hospital has been wonderful to us. The care was superb. Everyone* was very kind and caring, and practiced good hand hygiene. (Yes, I was watching.) They even had a person akin to a Child Life specialist who brought us puzzles and games, and a list of the quite extensive video library. The food was reasonably good and served in a room service style. I simply called and ordered my meal from a menu whenever I felt hungry. This is a very efficient method since it gives a much larger selection and eliminates wasted meal trays delivered to people who don't feel like eating. I think all hospitals should do this. The room was very nicely furnished and impeccably clean.

My dad drove us to our hotel in Pearland and now we are settled there comfortably to finish recuperating.

Here's our final inpatient picture.

(Look at the slideshow on the right to see us at our best.)

*There was only one nurse the whole time who was less than ideal and not paying attention to my pain issues. April, always the caretaker and dedicated nurse, even as she was recovering from her own surgery in a different room, hounded the charge nurse until my pain was well controlled.

The long-awaited moment...

The pain is much better today - almost none. And the foley came out this morning, also a big step forward. But the biggest moment today was when I finally passed gas. This means my bowels are finally working again, so I can start to eat normally, and the terrible nausea is finally going away. I have never been so excited about farting. I was able to walk around much more easily this evening.

April continues to feel great, and her creatinine is down to 0.9! She appears to be ready to run a marathon. She is being discharged today and it looks like I'll be out tomorrow.

Our friends Debbie and David from Houston visited us. My cousin Pat actually flew in from North Dakota to visit us. It was great to see them.

Thank you so much for all your notes and emails!

Hi everyone,

Just wanted to let you know how much we appreciate all your thoughts that have come to us as emails or comments.  We have been too busy to answer them individually, but rest assured we read and appreciate every one of them.  Thinking of all the support we have from our friends and family--and may we say, our co-workers feel more like family to us--has been very comforting to us.

Hopefully we will both be discharged tomorrow!

 

Best wishes...Rob and April

Friday update

April continues to do well. She looks great and feels great. Her creatinine is down to 1.1, from 5 pre-transplant, and she unloaded 7 liters of edema. The kidney looks great on ultrasound. April was excited to see how it looked and all the blood flow on the ultrasound. The surgeon commented that it was larger than he expected but a perfect fit in April's space. Of course it was. April and I have always been a perfect it. The kidney was made to go there - we just didn't know that until recently. Here's what it looks like. Not many people have pictures of their own kidneys.



Well, wouldn't you know it - we get a foot of snow in the Metroplex and we miss it!

This has been harder on me than I expected. They had warned me that the surgery is much more difficult for the donor, but still I did not expect this. Yesterday I learned how morphine causes urinary retention and the treatment for that with a catheter. Last night I experienced the worst pain of my life, but luckily Diluadid saved the day. It turns out all opiates seem to cause urinary retention in me, so now I have a foley again. This is not fun. The pain is better today - I can actually get out of bed - but nausea is nagging me. Hopefully tomorrow will be better.

And the kidney is in!

We both came out of surgery several hours ago. Everything went perfectly. We are doing fine. The kidney worked immediately, and April's edema has already gone away. She feels GREAT - the best she has felt in years - and is just ecstatic about her new kidney and the better life ahead for us.

Here we go!.....

I will be going to surgery soon. April will go about 45 minutes later. Next post will be postop. I am feeling good about this. But very very nervous.

This just in...

Going through kidney disease is full of surprises. One thing I never expected was to be in the news. But's that exactly what happened tonight when CBS 11 TV in Dallas-Fort Worth ran our story on the 10:00 news, telling how I was giving my wife a "kidney" valentine.

A family member sent a tip to the station and the TV crew came to our house last night - reporter Carol Cavazos and videographer Kristen. They were very friendly people and took a lot of interest in our story. April and I felt comfortable with them right away, as if they were a couple of old friends who had dropped by to visit. They spent about 2 hours with us. It's amazing how much work goes into a 90-second clip. You can watch it at http://cbs11tv.com/local/kidney.transplant.valentines.2.1483326.html.

We are pretty low-profile people, but we were glad to make our story public in the hope it will increase awareness of kidney donation. Perhaps it will inspire even one or two people to consider donating and helping the 105,622 people currently on the waiting list for a transplant.

I just finished a cool, refreshing bottle of magnesium citrate as part of the preoperative preparation. What fun! But get this: April doesn't have to enjoy this delicacy. In fact, she could even eat all the way up to midnight, while I have been on clear liquids since 3 p.m. How does that work?

Well, tomorrow is the big day. I don't really feel very nervous. I think it is because I feel so confident in our surgical team and the hospital, and we have been so well informed every step of the way. Also, this surgery could not possibly be as bad as watching April go through all the suffering she has over the last year. Hopefully, this is the end of that, so let's get this party started. I'll probably be a lot more anxious tomorrow. We'll see.

We have to be at the hospital at 5:30 a.m. So it's time to get some rest.
Good night...Rob

What is the risk to a kidney donor?

Living kidney donation is extremely safe for the donor. It would not be done if it were not, since it is an elective procedure. The low risk is partly because living donors are very carefully evaluated according to standard protocols. If there is any reason donation might be detrimental to the donor, he or she will not be accepted.

The risk of death during surgery is 0.03% (that's three hundredths of 1%), which is comparable to the risk of dying in a traffic accident over a 2-4 year period.

Long-term follow-up studies of kidney donors have shown they maintain excellent health and kidney function. In some studies, in fact, donors have been found to be healthier than the general population. One study found that 20 years after donation, donors had the very same kidney function and rate of hypertension as their siblings who had not donated. Life insurance data shows no difference in lifespan for kidney donors. Another study looked at World War II veterans who had "donated one kidney to their country" due to war-related injuries. Forty-five years later, their risk of decreased kidney function, hypertension or death was no different from their colleagues with two kidneys.

So...kidney donation has negligible risk to the donor, but is life-saving to the recipient. Sounds like a pretty good tradeoff to me.
-Rob

How can you donate a kidney to your spouse?

In the beginning, living donor transplants were only done between identical twins. While this worked very well, not many people have the convenience of an identical twin for a kidney donor. Next, the field was expanded to include close relatives, such as parents, siblings, aunts and uncles. These relatives usually have some genetically matching antigens which help reduce the risk of rejection.

Today, with a much broader understanding of transplantation and better drugs, we can do transplants from living unrelated donors. This includes spouses, friends, coworkers and even in some cases, altruistic strangers. Having matching antigens is less important than it used to be, which has made this life-changing procedure available to a much larger number of people. Comedian George Lopez received a kidney transplant from his wife.

Spousal transplants have remarkably good outcomes. A spousal transplant with no antigen matches has the same survival as a deceased-donor transplant with six antigen matches! So love really is good medicine.

-Rob


Here's an article about it:

Terasaki PI, et al. High survival rates of kidney transplants from spousal and living unrelated donors. N Engl J Med. 1995 Aug 10;333(6):333-6.

http://content.nejm.org/cgi/content/abstract/333/6/333

Pre-op visit

We have met both of our surgeons - Dr. Link, who will do the donor procedure, and Dr. Gaber, who will do the "installation" surgery. Both are very well respected surgeons. They both have excellent bedside manners, and we liked them and felt comfortable with them immediately. I am very confident in this caring and experienced team. I feel very good about the upcoming procedure. I am quite nervous about it, but I have no doubt we are both in very good hands.

I actually worked at Methodist for one year when I was a senior in college. I was a phlebotomist for the inpatient lab service. It was a very interesting job, especially for an aspiring doctor. I met many interesting people. I also learned a lot about the culture of Methodist, and they have a lot in common with Cook in that they truly value excellence, teamwork and patient-centered care. I can tell you from my own experience and that of others, this is not always the case at adult hospitals. This, and Dr. Gaber's stellar reputation, are why we chose to go to Houston for this procedure.

Surgery is scheduled for Wed., February 10 at noon. Watch for updates!
-Rob