As Sarah mentioned in her great blog post yesterday, we have just crossed the 4 month milestone. Yeah! My labs today are really good – creatinine is 1.13 which is actually in the
Sophie at 14 months
Daniel at 14 months
normal range. My life is pretty much completely back to normal (or at least what passes for normal when one is a single mother of 15 month old twins!) We are gradually decreasing the immunosuppressant medications. My big concern is getting my prednisone as low as possible. I will be on a low dose for the rest of my life unless a great new trial comes out that shows how to safely stop it. As I have mentioned before it is a lifesaving drug but has lots of side effects. For me the big problem is weight gain. I like to eat way too much as it is, and the prednisone takes away the sensation of fullness so I have gained 15 lbs since the surgery – yuck. I think I am going to have to join Sarah on Weight Watchers. The round face (moon facies) that I had early on due to the prednisone has improved as my dose has decreased but my neck is still pretty jowly. The only other side effect I have from the other medications is a burning sensation in my fingers and toes when they get cold – called a neuropathy. It is not too bad but I am looking forward to summer for many reasons; my sympathies to those of you living in Minnesota.
It is interesting to live life immunosuppressed. So far I have not had any problems. I am at increased risk of what are called “opportunistic” infections – those organisms that attack the immunosuppressed host, so monthly I get a breathing treatment with an inhaled antibiotic called pentamidine to prevent PCP pneumonia. For those of you history buffs, you may remember that this was the organism that was causing pneumonia in gay men in the early 1980’s and led to the discovery of HIV. I was told that I should avoid sushi and raw fish and meat in general – like that’s going to happen – but at least I will make sure I am only eating it from a reputable source. A girl has to draw the line somewhere. I do try to make sure the kids stay healthy. I took them to the Children’s Museum for the first time this weekend. They had a great time but I cringed every time they put a toy in to their mouths (which was about every second).
The kids are doing great – walking, running in to everything, chattering up a storm although no words yet. They are teething now, which is not pleasant. Daniel is soaked with drool – imagine a steady stream coming out of his mouth, and poor Sophie just hurts – she will be fine one minute and crying the next with her fingers in her mouth. We are going to take the plunge and do the first big trip this weekend. I am taking the kids and Vilma, the nanny, to Phoenix for a few days. I have a meeting there next week. My parents and my aunt and uncle will be coming as well; my cousin who lives outside of Phoenix will also visit with her son, the twins’ second cousin. Pray for warm, sunny weather in Phoenix!
Today is the 4 month anniversary of Brutus (formerly known as – my left kidney), moving to become Lisa’s third addition to her kidney family. I think we should count her first 2 kidneys since they did serve her well for years. I find myself pondering if she had been a Purdue or (egads) even a Wisconsin fan if Brutus would still be thriving – but it’s not worth the experiment. Sorry for those of you who don’t follow college sports, specifically Ohio State athletics, in order to understand why Lisa being a Golden Gopher is probably contributing to the success of this transplant. Ah, I digress…
Back to time. 4 months, 16 weeks, 124 days, 2971 hours (give or take a few based on actual transplant time) ago – 4 months seems like such a short time period in the grand scheme of things. But the reality is – it seems like FOREVER ago that we started this journey. At this time last year, Lisa had not yet returned to work – so those of us who work with her were still pretty much in the dark about her prognosis. We knew there were kidney concerns but not the extent. I had not even begun to think about becoming a living a donor in 2010. At this time (writing in the am of 2/21/11) four months ago – I was either still in surgery, or recently moved into post-op but still sedated. That really seems surreal to me.
So, at four months post-op – I feel fine. Actually my allergies are starting to get REALLY bad due to the juniper in New Mexico – but this is part of my life no matter how many kidneys I have. I really haven’t noticed any significant changes in my scars. They are still red. They still exist. I do periodically have some discomfort – but it’s directly related to dogs pulling on their leashes at significant force. For the most part, to realize I had surgery – I have to look in the mirror to see the scars. I previously wrote that this process had given me incentive to lose weight in order to prevent diabetes and hypertension. I’ve gained weight. Oops. I blame that on Lisa and travel. So, when I return home from a 6-day trip to DC early next week, I will be joining Weight Watchers. I’ve done it before and very successfully – so look forward to starting and of course getting weight loss back on track.
I had an opportunity to spend time with the Atlanta contingent of the Sampsel family last week. It was great to see everyone, share a lot of laughter (I can’t remember if there was snorting with the laughter) and great food. But it also reminded me of the importance of my health and the need to focus on diabetes (and kidney failure prevention). The reality of my family tree looms before me and I’m the only one who can change that course for me. I have grandparents on both sides that had diabetes, a father with diabetes, an aunt (not a Sampsel) and 2 uncles with diabetes….and I realize I’ve been wasting the momentum of the last 4 months. You are all thus now recruited to be my constant reminders to get back on track and focus on health! I, of course, plan to lose 20 pounds in one week. Ah time……
Today’s blog photo is of the orchid Lisa sent me on National Donor Day. An unexpected, but very much appreciated gift. have the pleasure of enjoying every day as it sits on my desk. (For those of you who recall that I have a cat that eats plants – he doesn’t seem to like orchids…..)
So, I’m “one of those people” who is totally amazed by how many days have been designated as something special…. But, before I go off on that tangent – I’d like to talk a bit about tomorrow, February 14th. Yes, it’s Valentine’s Day and still not my favorite holiday. Even the candy leaves a bit to be desired (but I am enjoying my sweet tart hearts!). Actually, not only is tomorrow V-Day – it’s also National Donors Day. Any past year, that has meant nothing to me……. This year – New Meaning!
Lisa gets to celebrate with not one, nor two, but three kidneys. I remain steadfast in knowing donating my favorite left kidney was the right thing to do and feel stellar. But, there are over 110,000 people in need of an organ of some type (kidney, heart, liver, lung, marrow, etc). So, as you celebrate Valentine’s Day and are fervently hoping and praying that next year I might celebrate it too with someone special – I’m hoping you’ll also consider organ donation. The fabulous thing is that you don’t have to donate while alive, admittedly that’s not for everyone (but I do have some mighty fine scars)! You can also choose to donate life (i.e. your organs) at the time of death. Sorry, this has turned morbid and I’m not hoping that anyone goes out and becomes a cadaver – but when our time comes – there are options that can help others and National Donor Day is meant to draw attention to those options. For more information from a much more reliable source go to: http://www.organdonor.gov/how.asp. This Valentine’s Day – you can give more than love, you can give life.
Now then, back to days…..
January 12: Feast of Fabulous Wild Men Day (how DID I miss that?)
February 23: International Dog Biscuit Appreciation Day (Brin pointed that one out to me!)
March 8th: Be Nasty Day
April 24th: National Pigs in a Blanket Day
June 21st Cuckoo Warning Day
August 8 is … Sneak Some Zucchini Onto Your Neighbor’s Porch Night
August 12 is … Middle Child’s Day
September 5 is … Be Late For Something Day
September 6 is … Fight Procrastination Day (really…be late one day and the next quit being late?)
October 21 is … Babbling Day
I’ll end with October 21st because it will also be the one year anniversary of my officially becoming a Living Donor Day. Babbling Day is lovely too, and I’m quite sure I babbled like an idiot both prior to and after surgery. If you are interested in more days – Google “national days” – every day is something and thank God they aren’t all Hallmark holidays!
Additional updates – yes, I’ve been on dates. No, nobody special – yet. I won’t blog about dating, I’ll offend someone, and if I don’t have anything nice to say – I should say nothing at all. But- dating sucks. All New Mexico critters (including this one) are celebrating warm, spring-like weather. I’m actually composing this fine piece while sitting on my back patio and watching Brin and Gabby beat the tar out of each other. I decided that was better than chasing Brin around and trying to get garden tools back. The cats enjoy sleeping in the sun all day – and just moving to find it. I’m traveling every week this month and on my next trips get to see some of my favorite people in Atlanta and DC. Super psyched!
Happy National Donors Day! Okay…and Happy Valentine’s Day…. Really – check out: http://www.organdonor.gov/how.asp.
So tonight I took the first bath since I delivered the babies 14 months ago. I am actually not a huge bath person – never seem to find the time, but the fact that I was unable to take a bath due to my dialysis catheter – was quite irritating and a constant reminder of the lack of normalcy of my life. The catheter finally came out a few weeks ago, once it appeared like things were stable and I was not going to need it, and I am healed up enough to finally have a soak in the tub. It was lovely.
Life has indeed settled into a new normal. I am doing well; Brutus is performing and my creatinine has bounced between 1.1 and 1.35 or so. Of course every time it bounced up into the 1.3’s I have a panic attack but it has behaved and bounced back down after that. We have dropped the prednisone down to 10 mg, which is great and I am hoping some of the side effects – such as my round face, fat neck and increased weight, will get better soon. I had a little trouble with my white blood count (WBC) – it got very low, into the neutropenic range, putting me at serious risk of infection. We tried stopping some of the medicine first, like the antiviral pill I was on prophylactically, and when that didn’t work I got a shot of Neupogen, which is typically given to cancer patients after chemotherapy. That is good stuff – my WBC rebounded within days and is now much better although something we will need to watch closely.
So what does this new normal look like? It is BUSY! On a typical day, I wake at 6 to shower and dress before the babies get up. They wake at 6:30 or 6:45 and I spend an hour with them getting dressed and playing. Vilma, their nanny who lives with us, starts work at 7:30 most days, so I bring them downstairs and she feeds them breakfast. Then I finish getting ready and if I am not hitting the road, I head in to the office. I work all day and get home by 5:30 when Vilma is off. More play time, baths, bottles and bed by 7:15 or so. Then I clean up their tsunamis, and go down to the basement to exercise – that has been pretty consistent for the past few months, which I am really happy about. Dinner at 8:30, then maybe a little work, and then I go off to bed. I have also been traveling a lot – more than I expected frankly. I have been on the road 1-3 days most weeks. All of which doesn’t leave much time to blog. I am sure Sarah is wondering if I will ever blog again! But here I am and will make more of an effort moving forward.
The kids are doing fantastic, walking and although not taking yet certainly making lots of sounds. They are interacting a lot more and it so cute then they make each other laugh! I will try to post some videos tomorrow. It was great to see Sarah in Denver this week although I am not sure she properly aappreciated our -8 degree weather!