Tuesday, February 23, 2010
I was just re-reading all of the posts that Allison, Jennifer and I did during Duni's transplant 'journey'. I can't believe it has been 6 years since we moved to Virginia in 2004 and began our countdown to the transplant in March of 2007.
Just to bring everyone up-to-date Bob is doing amazing...he just had his 3 year anniversary checkup and his surgeons continue to be thrilled with his progress. As you can see from this picture taken with Ali (at my brother's wedding last summer) he is happy, but most importantly healthy. He continues to umpire softball and of course, play golf every chance he gets. His Virginia Golf Buddies are an amazing 'family' and we just can't thank them enough for everything they have done.
We have been given the OK by his doctors to move back 'HOME'!! Of course the housing market isn't cooperating...but we aren't worried...it will happen when it happens. We travel to Connecticut as often as possible and have chosen the Colchester area to re-plant our roots.
This 'road' has been very long and very difficult, both medically and personally..but it has taught us so much. We are so grateful to some family members for reaching out to us..that meant so much. We continue to be awed with our friends 'backbone' support of us...but most of all we thank God every single day for Jennifer and Marc, Ali and Paul and...Katie, Michael, Jackson, Ali Rose, Caroline Rose, and Matthew (OK Molly and Duke also). What words can possibly describe what it means to turn around and see this wall of 'family' standing there ready to do battle for you? It takes our breath away.
When we move back home there is going to be one hell of a party...so keep checking Facebook for your invitation.
And finally, please know...
We LOVE you
We THANK GOD for you
We couldn't have made it through this WITHOUT YOU and
We APPRECIATE and CHERISH this second chance at...L-I-F-E
Monday, June 11, 2007
The only downside of our intense ‘focus’ unfortunately was a few of our friendships and relationships suffered. We know we didn’t keep in touch, or visit, or call as much as we normally would…but because God has blessed us with so many kind and understanding friends, most of you understood, stood by us, and have shown us you love us in spite of our shortcomings. From wonderful college friends, old and dear friends, to long ago neighbors, our Virginia family members, Bob's VA Golfing Buddies, and our amazing “Naubuc” family, there are no words that will adequately tell you what you have done for us. Each one of you held us up when we were down, prayed with us when we were scared, made us laugh when we didn’t think we would ever laugh again and let us ‘be quiet and still’ when that was what we needed. If we haven’t told you lately, please know you were and are loved, you were and are appreciated, and your unconditional support and non-judgmental attitude during this time will never be forgotten – ever.
And now to the reason why we ‘breathe in and breathe out’ every day of our lives, our beloved daughters, Jennifer and Allison. Along with your amazing husbands, Marc and Paul, our grandchildren, Kate, Michael, Jackson, Ali Rose, Caroline and Matthew, we know what you have given up (more than anyone will ever know) to help us through this. You literally put your lives on hold for 4 long, long years. You sacrificed everything to pull us through this.
To Jen – our first born. You are all sunshine and goodness, with a truly kind heart that is wrapped in sweetness. You always see the positive side of even difficult situations, and with such gentleness, people are naturally drawn toward you. You are fiercely protective of people you love and have surprised many by this toughness. It’s sometimes difficult to look at you now and not see the small beautiful miracle we held in our arms with such wonder and awe – but here you are, raising, with Marc four compassionate, loving and responsible children. It’s beautiful to see your legacy of kindness and concern for others being carried forward by your children.
And now, to our amazing “Bones”. We look into your eyes and see such strength and intelligence. You are our ‘fighter’, our ‘never give up’, our ‘I WILL get it done’ miracle, our rock. People see your beauty, big personality and foolishly underestimate your determination and resolve. Many a doctor has made that mistake, after assuming you were ‘just another pretty face’. Where would we be if you hadn’t decided “there has to be another way – there has to be an answer?” We don’t think it is to bold to say, you saved Daddy’s life by your never-ending stubborn determination to figure out what caused this disease and how could we help him. You refused to let anyone, or anything stand in your way of saving your father. There are no words......
We taught our girls…’when life hands you problems, and your back is against the wall, you have two choices: you can stand still and do nothing, or you can square your shoulders and take that first step forward’. There was no question which 'path' we would take. Although there were some consequences in taking this path, make no mistake, we have no regrets.
We won’t lose touch with you – and that is our promise. May God bless you all for all that you are, and all that you have given our family.
Wednesday, June 6, 2007
He did contract a cold up in CT last week while at Jen's house, so the docs put him on some antibiotics because with all the immuno-suppressors he's on a harmless cold can turn into pneumonia in just a few days.
This will be my last blog. We are all relieved to close this dramatic chapter of our lives. It has been an exhausting few months that has taught us a lot about each other, our friends and our families. We were able to reconnect with folks we hadn't spoken to in a while and felt your love from all over this country.
I think my mom wants to post the final blog, so keep an eye out for that. Thank-you all again for loving Duni, MaryAnn, Jen and I through the hardest 6 months of our lives. The unconditional support we received is a testimony to your compassion and empathy. May God Bless You.
Friday, May 4, 2007
Anyway, he is going to do 20 H-BOT treatments to aid in his recovery process and is already shocked at how amazing he feels after only 3. Pure oxygen is a true "miracle drug" for damaged tissue (kidney, brain, gut, lung, liver, muscle, etc...). And after all the crazy meds he's been on over the last few months, every cell in his body is crying out to be rejuvenated with pure oxygen. While drugs are good for the short term, they can really do a number on your body long term.
Jen and I bought my mom 4 H-BOT treatments for Mother's Day because even after 8 weeks post-op she still is having anesthesia-related issues. Anesthesia can take up to a year to totally leave the body and leaves some people "out-of-it" for months. My mom, being such a light weight, is one of them. So 4 hours of the H-BOT should blast that anesthesia right out of her! What a weird family we are:)
Wednesday, May 2, 2007
Daddy had his first umpiring job since his transplant. Everything went great until the 4th inning when he stepped into a hole running to third base and fell on his side. He’s fine – but when he came home, after finishing the game of course, he was dizzy. Long story short: after the fall he felt ‘OK’ but as the innings went on he felt dizzy. He never was nauseous, no blurred vision, but his right upper ribs were sore. I made him sit down (he actually was unsteady when he got home), pumped fluids into him and gave him a can of peaches in syrup. I had him take his BP. Listen to this…….after umpiring (and running) for 7 innings, his BP was only 112/65 – but his HR was 80, so after I checked for a concussion, I sent him to bed to "sleep it of".
My mom called me this morning and said the Duni was "totally out of it" when he woke up. Slurring his words, major brain fog, awkward gait, shaking hands, dizziness, depressed mood, etc... I hung up with her and called Dr. Megson's right away. She is Jackson's autism specialist and world reknowned for her work with neurological recovery. We both agreed that his dopamine receptor was probably effected by the surgery (anesthesia) and somehow triggered "an episode" by the fall. I told my dad that this was how Parkinson's felt. I made an appointment for him to go into Dr. Megson's office this afternoon for a hyperbolic oxygen treatment to stimulate his neurological recovery. He went in the "H-Bot" for 1 hour. Now read my mom's email from this afternoon:
The difference between Daddy this morning at 8:30 a.m. and now at 6:30 p.m. is truly unbelievable. This a.m. he was groggy, dizzy, slurring his words and “there was no one home” when you looked into his eyes. Now after his HBOT treatment he is alert, not dizzy and definitely not slurring his words. He is ‘chatty’ (or as chatty as he gets) feels much better…still a tiny bit dizzy, or off-kilter, but so much better. I definitely need to do my research on this subject because if I hadn’t seen it myself, I truly don’t know if I would have believed the change that is possible. He even admitted he was out of it this a.m. and now feels almost normal…..or as normal as he ever gets! This treatment r-o-c-k-s!
He is going to do a series of 20 H-Bot treatments over the next few weeks. Dr. Megson has recommended 1 hour a day for 20 days (verses 3 treatments/day for 7 days). I'm sure I will post another blog about this topic! Very cool stuff.
Monday, April 30, 2007
Duni, Jen, Matthew and Caroline took a side trip to Naubuc School on Thursday to visit all the teachers and friends who have been so amazingly supportive through this whole transplant. According to Jen, our two little ones (both 5 now), loved Naubuc and caused as much trouble as we used to:) Caroline's favorite part was the art room - just like her mommy's!
I think my folks will be going back to CT sometime in June. My dad wants to see the 5th graders - they were on some field trip on Thurs and he missed them. So they will swing by here again in a few weeks, grab Caroline and head back up to CT. That whole crew is hilarious when they get together.
I'm assuming my parents will need a few days rest to recover from the week, but I'm sure Duni will be out mowing the lawn this afternoon and back on the golf course ASAP. His 2 month post-transplant mark is coming up next week. That is a big milestone apparently. He will drop a lot of his meds at that appointment (anti-virals, anti-bacterials, antacids, BPs, etc...) and just stick with the anti-rejection meds for the long term.
Monday, April 16, 2007
When we first started our crazy special diets and nutritional programs, he reluctantly went along with it all. Now he is a willing and eager participant because not only does he feel amazing, but his team of doctors are in shock at how quickly and smoothly his recovery has gone. He firmly believes it is due to all the hard work he put into his health before the surgery - so he is not about to stop now, he's got decades to go:)
My dad called me this afternoon after a special package arrived at their house. It was a huge box stuffed with gifts from the teachers and staff at Naubuc School. You guys are fantastic. I'll be honest and say that not everyone in his life has stood by him during the past few months - some were hurt and even offended that he never told anyone what was going on (as if it was any body's business but his own), but he now knows without a doubt who truly loves him. The hundreds of you who continue to show him that love and support make Jen, my mom and I overjoyed and, if you can believe it, speechless.
My folks are going to swing back through here on Sunday to pick up my daughter Caroline and head up to CT for a week. My parents are going through serious Hughes children withdrawal. Duni told me that he was definitely going to stop by Naubuc to say hello to everyone and show off his 9 inch scar - he is so proud. Feel free to email them this week if you want to make sure your around to say hi - email@example.com
Monday, April 2, 2007
My dad went into the doctor the other day to discover that his creatinine levels had gone up a bit. They had to increase his immunosuppressants due to the increased rejection risk. I spent all day trying to figure out what would make his creatinie levels go up. The docs, of course, said it was normal and everything was just adjusting. That, of course, was not a satisfactory answer for me.
At first, I though it was due to his increased exposure to people, and therefore, viruses, which can trigger a rejection due to his complete immunosuppression (from the meds). But he is on such powerful anti-virals, that a little cold or flu virus would have no impact on him. Similarly, he is on high doses on anti-bacterials and anti-fungals for the same reason and effect.
Then, as I was driving around northern
There are a handful of drugs on the market that suppress the immune system to prevent various health issues – including organ rejection post-transplant. Other conditions that use these drugs are auto-immune disorders, cancer, and inflammatory conditions. The categories of these drugs are: steroids, corticosteroids and chemo-therapy. Some common names include: Prednisone, Cell-Cept, Albuteral, Ellidel, and Remicaid.
If you or anyone you know is taking any type of immunosuppressants, please warn them about the risks of environmental toxins. A person with suppressed immunity is extremely vulnerable to the negative effects of common environmental toxins found in everyday items such as processed foods (FD&C colors, artificial sweeteners, and preservatives), commercial cleaning supplies used in the home, schools and businesses, common personal care products and pesticides, herbicides and fertilizers. An immunosuppressed body is virtually defenseless against these toxins and extra care in avoiding them is a key component to recovery and permanent remission.
Nothing infuriates me more than watching a post-chemo / post-transplant patient sent off into the world without any information about their susceptibility to these harmful toxins that can and will trigger a reoccurrence, relapse or rejection if the proper steps are not taken to prevent or defend against them.
Thursday, March 29, 2007
He had his weekly check-up today and the doctors just laugh at him at this point, because they know they can't stop him from doing whatever the hell he wants to do...welcome to our world:) They love him, which is no surprise, and find our family fascinating. He got his staples taken out today, and didn't want any kind of special scar-diminishing cream, because he thinks "it looks cool."
He also requested all his lab tests so we keep an eye on his progress, which they of course found odd, but were happy to oblige. It is so awesome to track his recovery in numerical form by his lab results. His creatinine continues to drop, this week it is at a 1.4. His BP is holding steady at 115/75, so they dropped one of the BP meds altogether today. His glucose hovers between 80-100, which is excellent, his potassium is down from a record high of 5.8 to a 4.2, his bun is coming down, his hemoglobin is going up and his protein is going down - all great, great, great. We will continue to tract these numbers as Duni LOVES to see them. He actually enjoys taking his BP and temp the required 4 times a day - he cracks me up.
Saturday, March 24, 2007
I love your father - truly I do. He decided he HAD to build a deck off the back door - HAD TO. So Kenny came up and they are in the midst of building a deck. He just walked in and said my back hurts.....I wonder why? 17 days post-op from a kidney flippin transplant, bending, nailing, carry lumber...and he wonders why his back hurts.
I love your father - truly I do - but let's face it - sometimes he's a stupid as a brick.
Duni is dangerous when he's bored!
Thursday, March 22, 2007
She was thrilled. She can now drive and go back to work. She was growing restless just sitting around the house. Now she can chauffeur Duni around town. He has another appt. on Thursday. Every time he goes, they lower his meds. He loves that and is encouraged by how well his body is responding the my mom's kidney. His BP is still in the 120's, his glucose is back in the 90s and his creatinine is around 1.2.
Everyone from the transplant team has called them a dream couple. No issues before, during, or after the transplant. It's almost as if we have been working our tails off for the last 3 years preparing Duni for this to make sure his body would respond this beautifully...oh, wait...that is ALL we have been doing for the last 3 years. For anyone who thinks this result is just good-luck, think again. Good health has to be fought for, and we have been fighting for this for a long time. My parents are brilliant examples of what a healthy lifestyle can overcome. It is never too late to change your course and get on the road to a healthy life. It just take a little hard work and a stubborn New England attitude doesn't hurt:)
Sunday, March 18, 2007
After I dropped dad off at the house, I went to the Trotter's to pick up my kids and bring them over to see Grammy Squirt and Duni. My mom and dad LIVE for their 6 grandchildren, so seeing them was the best medicine! Caroline had lots of new things to show them. Since she saw them last she has learned how to jump rope, do a 1 handed cartwheel, and do a running cartwheel with a hurdle...yes, she is taking gymnastics. Her new random goal it to learn how to hola-hoop. Jackson is my techno-file and showed my dad his new video camera that can record up to 8 minutes of film or hold 20 digital pictures. Grammy Squirt always has the best food for Jackson, so he spent most of the time with his nose in their fridge looking for her special treats.
Then on Saturday morning, Caroline and I took Grammy Squirt shopping. We were out and about for a few hours. She had to move slowly to avoid pain at her incision, but gains more strength and mobility everyday. Dad and I then went out to Home Depot and Costco and he looked healthier than most guys at both places. His coloring is awesome and you'd never know he had a major organ transplant 12 days ago by the look of him walking around. His big thing will be trying to do to much to soon. He has no patience for "taking it easy". But he did admit that he was tired after our outing, so both my folks took a nap.
We left Saturday afternoon with both of them looking and feeling great. My mom and I spent an hour going over his meds and how to fill his huge pill box. We also went over his nutritional program to determine the rate at which to reintroduce certain supplements based on the guidelines in his transplant handbook. We were all pleased to see that they encourage supplement intake as soon as possible, they just warn against taking herbs, which I am not a big fan of anyway, so that wasn't a problem.
Mom will be able to drive on Monday, so she will take Duni in for his next check-up tomorrow morning. Once they both get clean bills of health next week, these postings will probably slow down to once a week or so - unless something crazy happens.
Thursday, March 15, 2007
His first post-op check up was yesterday. He was there for a few hours getting blood drawn and meeting with the surgeons, coordinators and various folks. They were all really pleased with his recovery. His BP has stayed well below 130, so they will be decreasing his BP meds. His energy is great and his pain is minimal. He has another appointment tomorrow that I will be taking him to. They expect to lower his immuno-suppressants meds at this appointment.
I hope to get my hands on the pictures Jen took of my dad when he left the hospital on Monday. I will post then when I get back from Richmond.
Tuesday, March 13, 2007
I forgot to mention in yesterday's post that my dad's kidney is fully functioning, so he will never need dialysis again - Praise God! His creatinine level is down to a 1.5 from a high of 11. My mom's pre-op creatinine was a 0.7. His BP is has remained in the 130's since arriving home. He is sleeping great and has a much better attitude since leaving the hospital.
The transplant coordinator keeps emphasizing to us that neither of my parents are sick - so they should not be treated that way. And frankly, being treated like a patient irritates them both. If anyone else tells my dad to take it easy, he is going to put his fist through a wall. He is a grown man and knows the rules, but wants to get back into the swing of things as soon as possible.
Their first post-op clinic visit is tomorrow morning at 8am. Look for a blog tomorrow on how that goes.
Monday, March 12, 2007
As many of you know, my parents are both extremely private people. Chances are neither one of them will ever want to talk about the transplant in great detail again. My dad has this unbelievable ability to close the door on his past - both the good and the bad. Once he is done with something or someone, he can walk away and never look back. He might want to talk about the transplant or he might not. If he brings it up, then feel free to ask away, but if he just shrugs a question or inquiry off, he is not trying to be rude, he has just moved on. This surgery was just a bump in the road for him. His kidney issues have never been a big deal to him - hence the reason only 4 people on the planet ever knew about them and also the reason I started this blog - otherwise no one would ever have known he was even getting a kidney transplant...you think I'm kidding!?! The last thing he wants to do is rehash it all. He's got people to see, places to go and golf to get back to.
Jen took some pictures of him today and hopefully I can get those posted soon. I will continue to update on a daily basis this week as he recovers at home. Jen is going to his first follow up appointment on Wed and I will be going to the second one on Friday. Jen will be heading home on Thurs and I will go stay Fri to Sunday.
Jen spent the day at home with mom, just resting, walking around and generally getting the cob-webs out of her body. That anaesthesia really did a number on her. Jen went to the hospital for a few hours to hang out with Duni. He was off all pain meds by Sat. They discovered the medication he is allergic to and were able to give him the last dose of that and be done with it for good - which made him happy. He was bored and restless and just wanted to get home by Saturday night.
I woke up early on Sunday morning to drive back to Richmond for my dad's big discharge. But I got a phone call from Jen that said his BP was not low enough for them to release him Sunday morning. I talked to Dad around 8am and he asked me to come down anyway because he was confident that he would be released in the afternoon. So Jen and I stayed at the hospital for 7 hours - and his BP never got low enough for his release.
The 3 of us hung out in his room and watched some bad TV, dog shows and old movies, walked around, ate bad hospital food and watched that stupid BP monitor every 10 minutes. Duni was getting pissed, so Jen and I kept taking little walks around the hospital so he could rest. His BP periodically would come down as low at 118/85, but would shoot back up to 160/90 a few cycles later. The docs wanted it between 130 and 140 for 2 hours. Ugh...that was the kicker.
So Jen and I left last night and called the nurses station before bed and his BP had been hovering around 140 for an hour. They felt confident that he would be released this morning. He is not a happy camper. He wanted to come home on Thursday. I'm waiting on a call from Jen right now to see what the docs said, so I'll post once we know for sure when he is being sprung.
** Jen just called and dad's BP stayed at 118 overnight - after they gave him an anti-anxiety med. Apparently this whole BP thing was the result of him being stressed out. His recovery will not be compromised by undue stress. We will not allow it - period.
Friday, March 9, 2007
Mom slept most of the day and is still not up to eating much. She has no pain (that the meds can't control), and is able to go up and down stairs without any problems.
Here is a good picture of dad and Jen walking around today.
Dad called at 7am. He slept great last night - no itching. He put in his daily menu requests to Jen and she got all his GFCF food squared away for the day. We are headed over there now with new DVDs and lots of food. The infamous Duni appetite is back.
The nurses and docs are so impressed by both my folks recovery that they all requested info on NEDlife and the programs we have done up until this point. They are all anxious to see how my dad's long term recovery fares compared to folks who have not implemented these programs. There are two researchers at MCV who are doing studies on the role of gluten and vitamin D deficiency in kidney disease, so they are particularly intrigued by dad.
Thursday, March 8, 2007
Dad is having an allergic reaction to one of his anti-rejection meds which is giving him a severe "rash". The rash is not visible on the skin, but is causing intense itching all over his body. They were able to calm the itching with high doses of benadryl, but are looking into switching this med.
Here are some pictures from today's visit. Dad got up and went for a walk for the first time this afternoon and was able to clean himself up a bit. All of these things brought him great joy. I am on the hunt for the cord to his DVD player so he's got something to do this evening.
Wednesday, March 7, 2007
Dad just called to remind us to bring his toiletries and food - he's bored. His creatinine levels have come down from a high of 10 to a much more acceptable 3. The docs are very pleased with that. His blood pressure was pretty erratic today ranging from the 180's to the 120's. He seems to be leveling off in the 140's, which makes the nurses happy. My mom's BP is 98/65, a little low, but nothing to worry about.
Tomorrow there will be more walking, peeing and eating of solid foods...I'm having a deja-vu of life with a toddler. Speaking of kids - Jackson got the flu today. He threw up 5 times. He has not gotten sick since he was 18 months old - not 1 fever, not 1 runny nose, no vomiting, nothing. While this might seem like a bad thing, it is actually encouraging because his immune system has been on overdrive for 7 years, attacking everything too aggressively, including not just viruses and bacteria, but also his liver, gut and brain. Paul is doing a great job taking care of him, lots of love and spot remover:)
That means they won't be able to come down here on Sunday for Jackson's birthday party because my dad's on high doses of immuno-suppressants which make him extremely vulnerable to infection. But hopefully Paul and the kids can come the following weekend to check on Duni and Grammy Squirt.
When Jen called the nurses at 6am this morning for an update, they had nothing but good things to say about both mom and dad's progress. They both slept great and were drinking clear liquids. By the time we got to the hospital they were both sitting in chairs and had some hot tea. Mom was still a little groggy, but much more lucid than last night. Her catheter was out and her pain meds had been lowered. Dad was up in his chair giving the nurses hell. 24 hours after a major organ transplant and he is already the life of the party! Typical Duni:)
Soon after we arrived, the occupational therapist wanted my mom to walk around. She wanted to go see my dad, so she walked down the hall to his room. He was THRILLED to see her - it was such a sweet and tender moment to see these 2 people, who have been married for 40 years and been through a tremendous amount of joy and pain together, to be overcome with emotion and gratitude for the others sacrifice. I caught the moment on film:
Our favorite uncle (my mom's brother, Steve) is taking us out to dinner tonight. He has been taking great care of Jen and I this week. After dinner, we plan on going back to the hospital to check in one last time before turning in for the night. The docs expect my mom to be able to come home tomorrow afternoon. They still anticipate that my dad won't come home until Sunday. We will be bringing him his portable DVD player - because "I'm bored", and his toiletries, because "I stink" and all his food because "I won't eat anything MaryAnn hasn't prepared".
We will post again tonight before bed. Thanks again for all your love - we feel blessed to have friends like you. We promise to get back to all of 40 of you who have called in due time as the craziness settles. Please bear with us, we are thinking of you as much as you are thinking of us. Without good friends like you, things would be harder to deal with.
Tuesday, March 6, 2007
Jen and I are home now - and will be lucky if we can stay awake until 8pm. When we left the hospital at 4pm, they were both beyond exhaustion and drifted happily into a drug-induced la-la land. We hope to see them a little more lucid and mobile tomorrow afternoon. I have posted a few pictures below of them pre-op and of Jen and I in the waiting room. I'll post pics of them tomorrow once all of the tubes and gone and they look a little less fragile.
Ali was very surprised how good Duni looked. He has a number of tubes and dials and cords coming out of him, but is all-in-all in good shape. Both sets of kidneys seem to be working great.
This will be the last post of the evening. Ali and her sister are going to give the patients a chance to rest. Phase 1 is over; now comes the hard part of recovery...
Everything went very well and Duni's new kidney was functioning properly before they started to stitch him up! There were no complications or hiccups and all is going better than expected.
The next post should be in 2-3 hours after Ali gets a chance to see Duni...
The next update should come around 1pm-ish when they've got some news from the surgery. Keep the whole family in your prayers.
Monday, March 5, 2007
Sunday, March 4, 2007
I will blog tomorrow night after we land in Richmond. We need to be at the hospital at 5am on Tues, so we will all hit the sack early.
Thursday, February 22, 2007
My mom is totally fine with it seeing that her life motto is "whatever it will be, it will be". My dad was initially irritated because he HATES dialysis, but his life motto is, "Eh - what are you gonna do?". How many of you have heard him say that over the years?
Jen and I had a totally different response - absolute disappointment ...because we are both desperate for a vacation from our kids!!! We both were looking forward to a week of shopping, eating out, catching matinees, reading, resting, knitting, writing, talking and generally enjoying the peace and quiet of life without our kids. Sure, we were going to check in on the folks occasionally to make sure they were still alive, but mainly we were both excited about hanging out together for a week.
As my folks read this, I bet they are both about to pee in their pants from laughter - and my dad is saying, "You're so bad." Again, how many of you have ever heard him say that??? But seriously, Jen and I have such wonderful husbands that they can both rearrange their schedules and take the following week off from work. We are both extremely blessed to have married such amazing men.
I'll keep you posted as we get closer. Also, my mom passed all her tests this week. So there are officially no more obstacles to the transplant except for the scheduling of the OR.
p.s. My dad came up today to drop off a lawn mower and hang out with Jackson for the morning. Both Paul and I thought he looked "amazing". The best he's looked in years. He was happy and energetic and reminded me of the pre-kidney disease Duni.
Friday, February 16, 2007
My mom needs to have meetings with the following people next week:
- Social Worker
- Chief Surgeon
- Abdominal CT
- Radiological Stress Test
- Primary Nephrologist Surgeon
They will both be having open surgery for the following reasons: "the laparoscopy is something the surgeons do, but they prefer what they call "open" surgery because, they basically just take the kidney out, and close you up - total surgery time is only about 2 hours. The laparoscopy surgery time is about 6 hours! The transplant surgeons prefer to do the open surgery because the 'open/surgery' time is shorter and they can get the kidney to Duni faster! If they went the laparoscopy route, my mom's kidney would be exposed to the 'air' much, much longer, meaning by the time it gets to Duni, you have somewhat negated the quick live-donor-to-recipient edge."
Expectations for my mom's recovery:
They will make about a 4 inch incision under the first rib (preferred left-side) under the breast, remove the kidney, then sew her up internally and put 'duct' tape on the outside! She will be in the hospital about 3-4 days. When she gets home they want her to move - walk, go to Wal-Mart, whatever she wants. If she is not experiencing tremendous pain, they want her to take Tylenol. The prescription for pain is Percocet. That has a minute amount of codeine in it and people with intolerance's to codeine, like my mom, say they don't experience any problems. They do recommend taking 1-2 Percocets at bedtime just to ensure a good night's sleep.
Expectations for my dad's recovery:
We will get more information next Wed after his meeting with the surgeon. Although, don't hold your breath for details, Duni has a tendency to let important info go in one ear and out the other:) As far as we've been told up to this point, the procedure is similar to my mom's, but the recovery time is twice as long to give the new kidney a chance to become fully integrated into the body's filtration system. They will both be home from the hospital within 7 days of the transplant. Jen will stay in Richmond for 10 days and I will be in and out as often as needed.
Monday, February 12, 2007
This is a great picture of Duni with a few of his grandkids, Molly (Jen's dog) and Ali. Jen took the picture at her house. Whenever Duni is up in CT, he is in charge of mowing the lawn...he needs jobs to keep him out of every one's hair:)
My mom just called and told me she has an appointment with her transplant team next Wed the 21st. They will spend a few hours going over all her tests and discussing exactly what she can expect before, during and after the transplant.
The chief of my dad's transplant team is on vacation this week, so as soon as she returns they can schedule his big meeting. Hopefully that will be next week as well.
If all goes well during those 2 appointments (and neither of my folks get a cold or the flu), they could schedule the transplant as early as Tues Feb 27th. All transplants at MCV are on Tuesdays, so if not the 27th, then probably March 6th.
On a side note, during dialysis today my dad asked the tech to check his cholesterol. Back in 2003, when he was first diagnosed with kidney disease, it was in the mid 300's. He tried a statin for a while with no success. My mom was able to get it down to the mid 200's with a lots of nutritional supplements. Imagine his shock when they told him it was 180!!! That is with no meds and no change in his vitamins.
There is a huge misconception in this country that high cholesterol is from a diet high in saturated fat. That is simply not true. For those of you who just gasped - pick up a copy of The Cholesterol Conspiracy to learn what in fact causes and cures high cholesterol. And it is not a diet low in saturated fat - that in fact can raise cholesterol.
The key for my dad was a strict gluten free diet. Once he eliminated gluten - 100%, his intestinal tract was able to heal and his body stopped absorbing excess cholesterol. Americans have destroyed their digestive systems over the years through overuse of antibiotics, ibuprofen, and highly refined foods. This leaves the body vulnerable to all sorts of health issues such as high cholesterol and high blood pressure. His BP is also back down to 125/90 - after 2 weeks back on 6oz of Xango.
I love the human body - it is such an amazing creation that can and will respond to a healthy lifestyle.
Wednesday, February 7, 2007
1. Colonoscopy: 100% cancer and polyp free. The nurse prepping her for the procedure was again in shock at my mom's good health especially considering she hasn't taken any meds in decades - and she is 60.
1. Dermatologist: No problems. Doc saw no reason for him to even be there.
2. VCUG: While easily the most unpleasant test he's ever had done, no concerns or problems detected.
Now they are waiting on one last appointment with the hepatologist to give the final go-ahead to both transplant teams. That appointment is on the 17th of Feb. Until then, they will just resume all normal daily activities - no restrictions besides my dad's dialysis.
I did learn something interesting from my mom today - apparently my dad's kidney's are regaining function (because he is back on a strict gluten-free diet). So they will not be removing his kidneys at all. They will just be adding my mom's as an extra safeguard in case his two eventually fail or can't bear the burden. So he will have 3 kidneys and my mom will have 1. How crazy is that? At least this way, he can give her back one someday if she needs it:)
It never ceases to amaze my how little people know about the dangers of gluten on people with autoimmune diseases. My dad's kidney failure was caused by autoimmune lupus of the kidney. If the doctors had told us immediately (back in 2003) about the gluten-free diet, he might not be having this procedure. There is a known link between MS, RA, GB, JD, HD, GD, MG, JA and many other autoimmune diseases and gluten. Seriously - if you know anyone with an autoimmune issue, please encourage them to try a GF diet. It is worth the sacrifice. Sorry - I'll get off my soap box now...
Monday, February 5, 2007
So now all they have left to do before the transplant is a few final tests. My mom has her colonsocopy on Wednesday and my dad has his VCUG early next week. Everything is still on track for the transplant to happen at the end of Feb or early March.
Sunday, February 4, 2007
The next time you write in the blog would you do me a favor and send a special HUGE thank you to the Naubuc/Glastonbury Families. They are constantly sending cards, emails, prayers etc. They have been unbelievably supportive and generous. Daddy has been very touched by their many, and continuing, kindness.
Also I thought this was pretty funny - it's from Kim (Gutt) Maltz....she
"I learned of Duni's "condition"..sounds so weird to talk about Duni with a condition. It's hard to imagine Duni with anything wrong that duct tape wouldn't fix! But, he was always a super-hero of sorts...still is-perhaps more so now!"
I thought the duct-tape comment was right-on! This is what I mean by the support we have been receiving. No one is questioning why we didn't tell them...they are just standing strong beside us! Now that's family!
Photo courtesy of the Hartford Courant, Friday January 2nd, 1998. Accompanying article entitled: "Gym Teachers Are Above Average"
Friday, February 2, 2007
Just don't worry - they are going to put some special spray on you so it won't hurt. Well, actually, it won't hurt because you are going to sleep. And I will send both you guys a Valentine's Day Card. I will ask God to help you. And He will help you.
p.s. Jackson say - "Grammy's Squirt's House. Computer, Please". Some days I would give anything to live in his world of perfect oblivion:)
Tuesday, January 30, 2007
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.
Thursday, January 25, 2007
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.
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:
3. Tooth Pulled
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:)
Wednesday, January 24, 2007
Monday, January 22, 2007
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.
Monday, January 15, 2007
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.
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.
Friday, January 12, 2007
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.
Thursday, January 11, 2007
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.
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.
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
Wednesday, January 10, 2007
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.