Doc's Pleased With Duni's Progress

One of the concerns for people with kidney issues is high blood pressure. My dad had really high BP when he was first diagnosed with kidney disease in 2003. He was not able to take any medication at the time because they all elevated his blood potassium to dangerously high levels. So he needed to try and control it naturally. After some research and failed attempts, he found the magic bullet to control his BP - 6 oz of Xango a day. Within a week of drinking this fruit juice, his BP went from 160/90 to 135/90 - and stayed that way for years.

Unfortunately, after his kidney's crashed over New Year's, his BP shot back up to 160/90. Since dialysis requires such a limited amount of daily fluid intake, he was forced to cut his Xango back to 3 oz per day. His BP would not go back down, so they put his on 2 different BP meds and it still won't budge below 160.

My mom just sent me this email:

Apparently the doctors are pleased with how well his kidneys are doing with respect to urinating. So they told him he can increase his liquids - so I'm starting him on 6+oz. of Xango a day, starting today. The goal obviously is to eventually get him off all those BP meds.

My dad is not a fan of pharmaceuticals and hates taking the BP meds - which aren't working anyway - which as you can imagine irritates him even more. So I will report back on whether or not going back on 6 oz of Xango can finally bring his BP back to 135/90 where is was before Christmas.

And More Tests...

Today's tests were:

Dad:
1. Dentist - checking for infections. They found 1 tooth that needed to be pulled, but no infections
2. Cardiologist -radioactive heart test - seriously. They inject him with some radioactive material and then scan his heart looking for artery blockage and/or other possible risk factors for heart disease. He passed with flying colors.

Mom:
1. OB/GYN: Pap and mammogram to check for all the various cancers. She passed all of those with flying colors as well. The Dr. was shocked that she wasn't on any HRT program and asked how she was dealing with all the hot flashes, night sweats and mood swings. She, of course, took the opportunity to tell him all about all the vitamins she takes and the healthy diet she follows and then gave the guy my business card. Apparently he was very impressed with how she has naturally managed her menopause and was anxious to see what NEDlife was all about.

Next weeks schedule:

Dad:
1. VCUG
2. Dermatologist
3. Tooth Pulled

Mom:
1. Colonoscopy

They should both be done with their prelim testing next week and the transplant team has them fast-tracked to do the actual surgery at the end of February. While my dad is being a good sport about the dialysis, there is NO WAY he could do dialysis for a prolonged period. He is required to sit perfectly still for 5 hours a day - 3 days a week. For those of you who know my dad well, you know his ADHD makes that rather difficult. So lets all pray the transplant happens sooner than later, for the sake of his mental health as well as his renal health:)

Colonoscopy

Dad's colonoscopy went great - all results "perfectly normal". He promptly told that there was not a chance in hell he would repeat that in 10 years as recommended - unless he needed another kidney.

And the Tests Keep Coming

Apparently, transplant recipients and donors have to spend more time and money on the transplant prep test and appointments than on the actual organ swapping event. It is hands-down the most thorough health eval I have ever seen. I am beyond impressed with the level of care and attention both my folks are getting at MCV. The transplant coordinator is wonderful and she has been very responsive to all my parents questions and concerns.

My mom will be going through her OB/GYN screenings this week. My dad has his colonoscopy tomorrow (fun - fun) and then he sees a dermatologist on Thurs. So along with his normal M/W/F dialysis, he's got a full week of appointments. They are both still waiting on the definitive tissue match for my mom's kidney - they are doing a DNA test which will take 21 days (from early last week). But the docs still want her to move forward with all the prep work since all the preliminary tests show them to be a match.

Due to the snow, dad has not golfed this week, but knowing Virginia it will be 60 degrees next week and he'll be back out there between doctors appointments. My mom is a battling the same virus that sent my dad to the hospital with pneumonia, so hopefully she will be feeling better soon.

More Tests

Bob met today with the Transplant Team of doctors who will be doing the actual transplant. He spent 3.5 hours with them. When I asked him what questions they asked he said..."The same questions I've already answered 10 times." Yeah, that's my guy - patience is not his long suit! He also met with the Social Worker, the Transplant Coordinator and the Dialysis Coordinator. He had 6 more viles of blood drawn today, but these are the "big" ones. I thought when they drew the 14 viles last week one of those would be for our tissue match - but I was wrong. These 6 viles (I'll be going in this week for mine) will be used strictly to see if our tissue matches.

It really is amazing how many tests we both have to have. Already we both have had 14 viles of blood drawn to check for HIV (lovely thought), Hepititis A,B,C, etc. and the most important one to see if our blood types match, a chest x-ray and a cardiogram. Now Bob goes for a Celiac test, a dermatology skin test, a colonoscopy (scheduled for the 23rd), and a radiactive isotope stress test. We "think" that should do it for tests.

That's all the news for now. He looks better than he has in a while. His color is very good and his energy level is excellent...so excellent in fact that he played golf Friday, went to a golf show on Saturday and played golf again on Sunday! He was thrilled! He's very fortunate in that his golfing buddies are awesome - very supportive and they keep a watchful eye out on him for me.

Thanks for the support, emails, calls and especially prayers. Please keep Bob in your thoughts.

Mom's Blood Pressure

When my mom went for her first round of donor tests, her blood pressure was a little high - 140/95. The doctor told her she needed to get it down into the 130's to be a viable donor candidate for my dad. While everyone agreed that the stress from the previous week was a major factor in her elevated BP, she still needed to lower it 10 points in a week. So they offered her BP meds, which she rejected promptly telling them, "I'll take care of it." They all smiled politely and said OK, just have it down into the 130's next week.

So my mom went home and drank 1 full bottle of Xango every day for 5 days and she went in this morning and her BP was 120/75. She just smiled and said, "I told you I'd take care of it." Typical MaryAnn - fiercely independent and determined.

Thank You for All the Love

I just wanted to send a quick thank-you to everyone who has responded to our emails about my dad and this blog. Tons of folks have communicated their love and support for my dad and our family. We feel very blessed to have such a strong group of friends who have loved us all through the years.

We're 3/4s of the way there!!

Just got word from the Transplant Coordinator that I am the healthiest donor she has ever seen! All my tests came back 100% perfect! Not only are Bob and I the same blood type (A Negative..which we already knew) but all my blood tests, urine protein, creatinine, hematology, HBGs, etc. are "fantastic".

Now we have to wait until next week for the "big" result....the actual tissue match. I have great faith that this also will come back "fantastic"! We've all worked so hard over these past four years to get Bob as healthy as possible so that when the transplant was necessary, he would be the healthiest recipient ever. The doctors as MCV said when they looked at his original lab results, that if we hadn't worked so hard to get the rest of him healthy, they would never have considered him today for a transplant. That's pretty sobering.

But that's old news - we are a positive family that doesn't look back - doesn't say 'what if' and especially doesn't sweat the little stuff. We believe that you have the power to do anything if you want it badly enough - and believe me, we want this!

So say a prayer (or two) and know that all your wonderful words of encouragement are needed more than you will ever know.

Bob and I are so blessed to have Jen and Ali (and yes the boys and grandchildren also) in our corner...how can we lose with such a supportive family like that.

A Little Background Info

Before I start posting updates to my dad's condition, I thought I should first post a summary of how he got here. Since the only people who were "in the loop" about my dad's kidney problems were our immediate family members.

Those of you who know us, know that we are very private and at my dad's request, kept his health issues to ourselves. He is not a big talker and needed to process what was going on before he made a decision. We respected his wishes and he has recently decided to go forward with the transplant that 4 years ago he was not even willing to discuss.

Thanksgiving of 2002 - My dad looked and felt horrible - gray coloring, water retention, fatigue, and sleeplessness.

Early 2003 - Went to doctor and found out he had protein in his urine and high creatinine levels. They referred him to a nephrologist in CT.

Summer 2003 - Nephrologist did a kidney biopsy and found he had auto-immune lupus-like glomerulonephritis.

Summer 2003 - Nephrologist told him he'd need a kidney transplant in 3-6 months. Dr. told my dad to come back when his kidney failed and they'd start dialysis put him on the transplant list by the end of 2003. Dr. said he was not "healthy enough" for a transplant at that time anyway (heart issues).

Fall 2004 - My dad decided not to take the wait and fail approach and decided to try and regain some kidney function to delay the transplant as long as possible. He sought the help of 3 nutritional medicine doctors in CT and Virginia. They all agreed he should start a gluten-free diet ASAP as glomerulonephritis has ties to Celiac Disease.

Fall 2004-Summer 2006 - Dad went on a strict gluten free and casein free diet along with tons of vitamins and special supplements. He regained 25% of his kidney function during that time along with his heart health - much to the surprise of his nephrologist who said his condition was irreversible.

Summer 2006 - Decided to reintroduce gluten since his kidney and heart were doing so well. Within a few months his kidney function dropped significantly.

October 2006 - Went back on the GFCF diet

November 2006 - Contracted a cold

December 2006 - Cold turned into pneumonia

New Year's Eve 2006 - Took himself to the emergency room were they treated his pneumonia.

January 3rd, 2007 - Kidney function never rebounded after the reintroduction of gluten and the bought with pneumonia, so dialysis was started.

January 8th, 2007 - Nephrologist at MCV, in Richmond, evaluated him and discovered that he was finally healthy enough for a kidney transplant and felt that even though he could probably regain some kidney function, it was not worth putting him through extended dialysis if a living donor was available for a transplant.

January 11th 2007 - My mom got tested to be a donor for my dad and the team is optimistic that she is a match.

First day back

Well it is the first day back home with out mom and Duni here and it seams very quiet. If you know my father you know that his volume level is rather high and mix in 6 kids he becomes even louder. So needless to say it is very quiet here. I did talk with my dad and he is very happy and also excited about" getting this kidney fixed" so he can get back to teaching and of course golfing everyday(he played today at 10am). Allison and I got him a portable DVD player and apparently he is the most popular man there. He is very happy!!!! As far as mom , she is feeling much better do to the fact that they have a great relationship with all the doctors and the rest of the staff. Things are moving along nicely. We will keep everybody posted. Jenn

Great Idea

Great idea to post all of Duni's info on a blog! Since you'll be giving everyone all the info you've got, there should be no need to ask additional questions (they'd be the same questions you have and emailing "I don't know" would get old...)

Why a Blog?

I am Bob's youngest daughter, Allison. I started this blog for my father due to the overwhelming interest in his kidney transplant situation. There are literally hundreds of family and friends that want to be "kept in the loop" about my dad's transplant. So my sister, Jennifer, and I decided that this would be the best way to do that to prevent us from spending hours on email and on the phone rehasing the same info over and over (we do have 6 kids between the ages of 5 and 12 between us:)

So I hope you all find this blog informational and helpful. I plan on posting weekly and my sister and my mom will also have authority to post, so you might read a blurb from them every once in a while. But since my mom is hoping to be the kidney donor, she will be extremely busy over the next few weeks.

Welcome to Duni's Blog

Dear Duni,

I hope you feel better in the doctors. I love you so much. I wish you could breath better and I love you a lot and I want you to have good doctors.

Love, Caroline