Trip to Snowy Portland

(This photo is the view from the doctor's office window when we arrived...dark and covered in snow!)


Today we made an early morning trek to Portland to see Dr. Barry. He examined Brian and scheduled his "bilateral allograft nephrectomy" (removal of transplants) for January 12. Luckily, we were also able to complete all the required pre-op visits during this trip. Once again we realize how blessed we are to have access to the expertise of these wonderful doctors at OHSU...Dr. Barry has a very calming presence and we are so thankful for the part he will play in this journey. We appreciate your prayers as we prepare for the surgery and recovery :)



(This is snow-covered El Pollo Loco...LUNCH!!)

December Doctor Visit

We saw Dr. Wahba today. As always, he wants to know exactly how Brian has been feeling. Truth is...not very good lately. His blood pressure is very difficult to control...he's having constant headaches...he's very tired...his appetite is poor, resulting in a failure of our attempt to fatten him up. (I have offered several times to be his donor for a fat transplant...but apparently we are not compatible - LOL!!)

Dr. Wahba feels that much of the recent downturn is due to actual rejection of the transplant. This is likely because of reduction in the immunosuppression after dialysis began. He has been very patient with our decision to wait on the removal of the transplants, but is happy that we are moving ahead with this step now. He feels that Brian's overall well-being will improve when the kidneys are gone. As mentioned in the previous post, we will be seeing the surgeon at OHSU at the end of December. The actual removal of the old "kids" should take place soon after the first of the year. Until then...please send all your unwanted calories to Brian and I will be sure not to open any of the envelopes!!!

Got That Appointment!!

Brian got his pre-op appointment with Dr. Barry....December 30...no more news today :)

Two Thanksgivings!

We have so much to be thankful for this year that it seems appropriate that we celebrated Thanksgiving two days in a row! Yesterday we were blessed with the opportunity to celebrate with our wonderful neighbors and their families. Good food, good company, and wonderful stories of "the good old days".

Today we had our own little feast at home...just the three of us along with some very sneaky felines who also enjoyed the turkey :)

Next week we will be working on scheduling an appointment with Dr. Barry, the surgeon at OHSU, to begin the pre-op evaluation for the removal of Brian's transplanted kidneys. Brian now feels he is ready to take the next step, and Dr. Wahba is encouraging us to head in that direction.

Hope everyone had a wonderful Thanksgiving.....onward to Christmas!!

Help Wanted...

Hello Friends,
We are trying hard to fatten Brian up!! We are looking for all of your seriously fattening recipes to help with this task!! If you have some yummy ideas to share, please email them to mrshinds2001@yahoo.com

We are trying to avoid chocolate (bummer!), tomato based recipes, and potatoes (okay in some recipes because we can leech the potassium from them). These things aren't good on a dialysis diet..but anything else goes :) Any and all help is much appreciated!!

Ouch :(

This is what a post-dialysis headache looks like...not fun!

CT Scan

Brian had his CT scan at the hospital yesterday. Dr. Wahba just called to say that the results look good. We are extremely relieved at this news :)

Fall Fun and October Dr. Visit

We saw Dr. Wahba yesterday...still working on getting those meds adjusted after switching the anti-fungal drug...also conferring with the transplant team @ OHSU regarding the immunosuppressant regimen. Dr. Wahba also heard some funny lung sounds during the exam, so Brian will have a CT scan on Wednesday to see if anything unusual is going on there.

Ashley did not have school today, so we went to this fun little produce farm called Greens Bridge to get pumpkins. They have amazing stuff there...monster-sized veggies, gourds like I've never seen before, and beautiful pumpkins for only $1!!

Update...

Brian has officially completed his 1 year of treatment with the anti-fungal med called itraconazole (what a year it was!!). He has now switched to a lower dose of a new drug. This, of course, has made it necessary to adjust dosages of other drugs including the immunosuppressants and blood pressure meds. So...we are now in that "juggling" stage where the doctors try to figure out what will get the results they want.

Other than that, things are pretty stable..Brian has managed to avoid the yucky cold that Ashley and I have had...yay Brian!!

A TEENAGER in the House!!

Ashley celebrated her 13th birthday yesterday. Boy, how time flies!! Coincidentally (or maybe not), Brian started a new blood pressure medicine just the day before!! This one actually seems to be getting some results, and we are very happy about that.

Today we spent the day in Lebanon...at the hospital....this time Brian was NOT a patient...hooray! He was speaking about his transplant/dialysis experience with groups of Critical Care nurses doing internships at the hospital. Along with a nurse from the dialysis unit, we had the opportunity to broaden their knowledge and help them understand dialysis from the patient's point of view. It was fun for us, and hopefully beneficial for them :)

Cardiologist

We saw the cardiologist today to follow up on the echocardiogram Brian had a while back. He confirmed there is a murmur caused by an issue with the aortic valve. It is something that is common in dialysis patients and people with high blood pressure. As long as there are no symptoms, they are not overly concerned about it...just keeping an eye on it. The cardiologist will communicate with Dr. Wahba regarding a plan to adjust blood pressure medicines in an effort to achieve better control.

Summer's Winding Down

Making the most of the last few weeks of summer...a visit with Grandma and Grandpa (who worked tirelessly during his entire stay...thanks Papa!), back-to-school shopping, and a drive to the coast for some sightseeing and the aquarium.
Still trying to get used to the idea that Ashley is going to be a TEENAGER in less than 2 weeks!!!

ANOTHER Doctor in the Picture...

As if there weren't enough of them already......Dr. Wahba received the results of the echocardiogram that Brian had on Friday and there are a few concerns, so we will be off to see the cardiologist on September 4th.

Tomorrow Dr. Miller will be taking a post-op peek at the fistula incision.

Quick Update

Thursday's dialysis treatment went well...fistula seems to be behaving now. Today we're back to Corvallis for an echocardiogram and EKG...just to make sure everything is okay. So glad they are taking such good care of Brian :)

Neat Story

If you want to see a touching story about transplants...click on the button that says "I'm Very Nice" just below the "Donate Life" button in the left column. It will take you to the Operation Nice Blog. Look @ Wednesday, August 5. You'll enjoy the video.

A L-O-N-G Day!

This has definitely been a long one! Last night before bed we unwrapped Brian's arm. It was immediately apparent to us that the fistula wasn't doing what it's supposed to do. (It has this "buzz" to it that you can feel and also hear with a stethoscope). We phoned the doctor and he advised us to go to the dialysis unit this morning as usual and let them determine whether or not it was working. Well...it was not :(

The dialysis folks called the surgeon who met us back at the Albany hospital. Dr. Miller determined that a blood clot had formed in the fistula. This sometimes happens as a result of working on the blood vessels. To make a long story short...Dr. Miller "fixed" it and Brian received dialysis as an inpatient today. He's now home and we are tired!!

Home and Resting

Brian is home and resting semi-comfortably after having the fistula banded this morning. Dr. Miller feels that everything went well, and the fistula should have a more appropriate blood flow now. They will use it for dialysis tomorrow...keeping our fingers crossed that it works as it should!!

Monday's the Day

Saw Dr. Miller today. He will be banding Brian's fistula on Monday. It's a simple outpatient procedure and will be done at the hospital here in Albany :)

Update...

After much consideration, Dr. Wahba has decided to send Brian to Dr. Miller to have the fistula banded. After reviewing the recent test results, he still has numerous concerns about blood pressure, fistula blood flow, and cardiac output. He's hopeful that this adjustment to the fistula will bring improvement. We have a consultation with Dr. Miller this Friday, and will probably set a date for the procedure at that time. The following Friday Brian will have an echocardiogram and EKG to be sure there aren't any further complications. It looks like it will be a busy couple of weeks now, but we are thankful to have access to the care that Brian needs.

Portland

We made the drive to Portland yesterday to see Dr. Barnes in the infectious disease clinic...sounds icky, but she is the specialist handling the treatment of the histoplasmosis. She feels that Brian is doing well and will likely be able to be transplanted again at some point. We discussed our desire to postpone the kidney removal and preparation for re-transplantation for a while. She believes this is a wise decision and will not affect Brian's current health or the possibility of a future transplant. She will be presenting Brian's case to the entire team of infectious disease doctors next week for further input. They will also give input as to the continuation of the medications being used to treat the infection. We certainly feel blessed to have these wonderful, knowledgeable doctors caring for Brian!!!

By the way...El Pollo Loco was super-good!!

Improving

Brian had his fistula flow and cardiac output checked at dialysis on Tuesday. We are happy to report that the fistula flow seems to be coming down to near the higher end of the "normal" range. (That was a confusing sentence...anyway, it's good news :) His cardiac output is also in the normal range. We are happy to hear this, because there are some heart problems that can be caused when the fistula flow is too high. We are waiting for Dr. Wahba to review the report, but we hope that the good news will mean that no surgical corrections on the fistula are necessary.

Tomorrow we are making a trip to Portland to see the infectious disease doctors, and hopefully get some El Pollo Loco while we are there!!

Can't Forget Chella!

Had to get in a photo of Chella who took the group photo in the last post....here she is with Janel and Haley making s'mores :)

So Thankful for Family

This week we were blessed with a visit from our nephew Stevie (actually he is grown-up Steve now, but always "Stevie" in our hearts!!), his beautiful wife Janeth, and their awesome family...Janel, Chella (who was taking the photo), and Haley. It was so much fun having them in our home. We watched movies, made s'mores in the back yard, and had a blast being entertained by 3 year old Haley who is the cutest thing ever!! They left yesterday and we're having trouble getting used to the quiet!!

Anyone else up for a visit??

Detour

Brian had his monthly appointment with Dr. Wahba today. His overall condition is good...lab tests are good, and blood pressure seems to be getting back within "normal" dialysis range. There are still some concerns about the fistula blood flow being too high. They will test it again at dialysis on July 14th (Brian's b-day!). Dr. Wahba still recommends keeping a watchful eye on it as opposed to surgical modification at this time.

Now for the detour...after talking with Dr. Wahba today, we have decided to take a temporary break from pursuing a transplant. With all that Brian has been through these past few years...living with the symptoms of the histoplasmosis infection before it was diagnosed, then the rigors of the diagnosis and treatment, and now all the prep for dialysis...he really isn't physically or emotionally ready to do all that will be required for a transplant...not yet, anyway. So, we have decided to delay the removal of the transplanted kidneys, and we'll meet with the infectious disease doctors later this month to make sure they approve of this change in plans. We will also get an update on their plan of treatment for the histoplasmosis.

We feel this "detour" will allow us some time to just enjoy life as it is now and catch our breath before diving into the next part of the journey. We appreciate your prayers as we continue to rely on God completely for his wisdom and guidance :)

Fun Father's Day :)

We had fun celebrating Father's Day at Belknap Hot Springs. We were able to leave after dialysis on Saturday and spend 2 nights enjoying the beautiful scenery...got a little rain on Sunday, but overall the weather was good.

Brian has an appointment with Dr. Wahba on Wednesday...we have lots to talk about...update on that after appointment.

Is It Bad to Be TOO Good??

Apparently so!!

We had Brian's dialysis care team meeting today. Everything is going well aside from his blood pressure. In fact...his fistula is working TOO well!! Who knew this could be a problem? There seems to be too much blood flow through the fistula and there are concerns that this could cause complications in the long run if not corrected. They are keeping an eye on the blood flow measurements and will likely be recommending some tests and possibly surgical correction in the near future.

ANOTHER Doctor

Today we went to OHSU for an appointment with Dr. Barry. He is a surgeon in the Department of Urology. He will eventually be removing both of Brian's transplanted kidneys. They feel that removing them will make it easier to effectively treat the histoplasmosis and will also allow his immune system to become less sensitized (no more foreign bodies to fight off). This will give him a better chance to be approved for a new transplant. Because of the doctor's schedule, we won't be embarking on this adventure until July.

Coincidentally, Dr. Barry knows many of the doctors who cared for Brian at Cedars-Sinai during the previous transplants...small world!!

Happy Mother's Day :)

Hope everyone had a nice Mother's Day. The weather was beautiful here today (supposed to rain again starting tomorrow). We drove to Corvallis and walked along the River Walk...it's so pretty.

This Wednesday we will go to Portland to see a surgeon regarding the removal of Brian's bum kidney. We still have lots of questions regarding this and hope to get some of them answered this week.

Beautiful Spring Weekend

Saturday we enjoyed a visit with good friends of the Hinds family...Sheri and Charlie. They have know Brian since before he was born!! They live about an hour and a half away in Gresham. It was so nice to spend time with them and enjoy their hospitality. Ashley especially enjoyed feeding peanuts to the many squirrels and blue jays in their back yard. Also in the photo is Sheri's daughter Laurie and her friend Dale.

Today we have been working on getting rid of the dreaded moss in the back yard and getting ready to plant some things in the garden. It's not quite warm enough yet, but Brian is very anxious to get a tomato plant in the ground! I think he is jealous of my beautiful tulips and daffodils!! (The fact that they are beautiful has nothing to do with anything I did...they are just there!)

Getting Back to "Normal"

Not that anything is exactly normal around here...but Brian is feeling a little more "normal" now that he doesn't have 6 inches of plastic tubing sticking out of his chest! Dr. Hamlin removed the catheter on Friday morning...all gone...just a bandaid there now...Hooray!!! The fistula is working well, and dialysis is going as it should. Brian is still having blood pressure issues, but we're experimenting with a small dose of a med that he had some trouble with before. So far, so good :)

The weather has been beautiful this weekend and is expected to remain warm and dry for most of the coming week. We took a scenic drive yesterday and saw lots of neat stuff. The photo is Ashley (all 5'2" of her) with Brian at Waverly Lake here in Albany.

Sharing a New Friend's Good News...

One of our dialysis friends, Chi, had her last treatment today. She is getting a kidney from her dad on Friday at OHSU. We are so happy for her! Keep her and her family in your prayers in the coming weeks...those first few weeks post-transplant are pretty stressful for everyone!

Spring Break

Dialysis has gone well this week. We have a new hero at the unit... Chris has successfully put Brian on the machine (and gotten him off) with no problems or infiltration...hooray! Tuesday and Thursday were both successful :) Dr. Wahba is still working on getting blood pressure under control. Switching or adding drugs is a little tricky because many of the drugs interact with the antifungal med he is on.

This is spring break for Ashley (and me) so we took her and her friend Jenna to an indoor pool in Eugene yesterday. It was lots of fun.

Partial Success

Well, they tried to use the fistula again today. It was a partial success...the first needle went in fine, but second needle began to infiltrate again. They moved that connection to the catheter and continued the treatment using both accesses (is that really a word?) today. There will probably be more bruising...we've decided that Brian does not look good in purple!

Really, Really Good News...

Great news today! Brian received approval of his Social Security Disability application. We've heard so many stories of people waiting a VERY long time to receive a decision on their cases (and many being denied) that we see this as nothing less than a miracle :) Thanks for all your prayers! By the way, Dr. Wahba has given the okay for the dialysis staff to use the fistula tomorrow. We're keeping our fingers crossed that things go better than last time!

Spring Is Here

No school and no dialysis today, so we decided to enjoy the beautiful spring weather. We took a drive out to the lambing barn at OSU to see all the new babies. They are sooooo cute!!


Dialysis is going okay for now. Brian's labs are looking good which means he gets to continue on 3 and a half hours...hooray!! It looks like it may be another week or so before they try using the fistula again. His arm is looking lots better :)

A Hard Day, But A Good Day

Yesterday was a rough day...the first day to use the fistula for dialysis. That means real needles in the arm as opposed to just connecting via the catheter. Things went well at the beginning and during treatment. However, when they took Brian off the machine there were some complications. Something called "infiltration" happened. That means the vein continued to bleed, but the blood stayed under the skin causing pain and swelling. The dialysis staff and Dr. Wahba got things under control pretty quickly, but now the arm is swollen and pretty ugly!! This will mean that it's back to the catheter for a while.

Came across this quote the other day that seemed to be appropriate yesterday:

"If God sends us stony paths, He will provide us with strong shoes."

Our "strong shoes" have come in the form of great people who have been so encouraging and supportive during this time. You can see some of this in the photo above. Brian's former co-workers at Country Hills School in Brea sent him a very generous care package full of good wishes and gift cards...it was just like Christmas!!! Thanks to everyone at Country Hills :)

A Great View

Brian has the best seat in the house at the dialysis unit. (There actually are no bad seats.) It's like a corner suite! The view is beautiful. It's so nice that they have a webcam on the building that broadcasts the scenery on the TV in the unit. We wanted to post some scenery pics, but it's been very foggy in the mornings. This shot of some of the trees is the best we could do. Hopefully we'll get some more later if the weather gets better.

Dr. Wahba saw Brian during his treatment yesterday. He was very happy with the most recent lab work, and he thinks Brian will do well on three and a half hours of treatment as opposed to four. It's always nice to hear that things are working as they should.

Friends

Brian took advantage of a day off from dialysis to visit his friends at Western Oregon University. They have been such supportive friends. While he was still able to work, they watched out for him and did some of his more strenuous duties. When he was no longer able to work, many of them generously donated sick leave for him. Big thanks to all our friends at WOU!!

Corvallis

Brian had his first treatment at the Corvallis unit today. It's a nice unit with a wonderful view. We'll post some pictures of it later...it was too dark/foggy this morning. The treatment was 3 and a half hours and went well. His regular time will be 6:15 beginning on Tuesday. Again...thanks for all the kind notes and support from you all!!

First Treatment

Brian had his first dialysis treatment on Tuesday at the Albany unit. It was a short run...just 2 hours. He did very well and has much more energy today than he has had in quite a while. We did some shopping this morning and went for a long walk this afternoon. Tomorrow he will dialyze again for a little longer period. On Saturday we will be moving his treatment to a unit in Corvallis (about 10 miles away, but very near his doctor). This is due to a mix-up with insurance info...the Albany unit is actually considered "out-of-network" for our insurance plan. His regular time in Corvallis will be 6:30am to 10:30am on Tuesday, Thursday, and Saturday. The early bird (Brian) is very happy with that time, but I say UGH!! Just kidding...we are grateful to have such good treatment....at any time!!

The Catheter is In

Today Dr. Hamlin (who also did one of Brian's recent biopsies) put in the temporary catheter for dialysis. It was an outpatient procedure, so Brian is home tonight. For now Ashley and I are just trying to keep him comfortable. He's holding up amazingly well, and we are proud of him : )

Tomorrow he will have a short (2 hours) dialysis treatment at the unit here in Albany.

A Splurge Before Dialysis

One thing we really miss up here is El Pollo Loco. A few months ago they opened one near Portland...about 70 miles (one way!). Well, we are a little "loco", so yesterday we drove up for lunch. Kind of a last splurge before beginning dialysis. I'm telling you, we are working hard to keep Brian fattened up...so pretty much whatever he wants to eat he gets it...as long is it isn't detrimental to his health!!

Things Are Moving Quickly!!

Yesterday's lab work revealed a big decline in kidney function over the past week, so Dr. Wahba has scheduled Brian to have a catheter placed on Monday morning. Depending on how things look at that time, they will either go ahead and dialyze him on Monday at the hospital or wait until Tuesday and do it in the dialysis unit. We are so thankful for Dr. Wahba's diligence and dedication to seeing that Brian gets all the care he needs in a timely manner.

Thanks to all who have been keeping us in your prayers...we appreciate every moment of your time :)

A Bit of Good News

Today Brian drove to Portland (where it was snowing!!) for an appointment with the Infectious Disease doctors who are monitoring the treatment of the histoplasmosis. He had another CT scan of his lungs which showed no further progression of the fungus there. That is very good news. The most recent urine culture also showed no increase in the histoplasmosis. Again...good news. We are so thankful for every bit of good news we receive these days :)

Soon the Infectious Disease doctors will confer with the Transplant team and discuss whether this kidney will need to be removed after dialysis treatment begins, and what implication the fungal infection may have on Brian's eligibility for a new transplant.

We will see Dr. Miller on Thursday to have the fistula checked. To our untrained eyes it is looking pretty good.

Oh Boy!!!

Look what the "angels next door" did to cheer Brian up this morning. If you know ANYTHING about Brian, you know this made him very happy :) :) :)

Fistula Done :)

Yesterday Dr. Miller connected a vein and artery in Brian's left arm to create the fistula access for dialysis. It was a long day, but everything went well. Brian is blessed with very good veins, so the doctor is hopeful that the fistula will mature quickly and will be usable soon. He will check it in a week and make sure it's healing appropriately. For now, Brian is just resting and popping Tylenol to stay comfortable. Thanks to everyone who's been praying for him....we all appreciate you!

Meet Our Angels Next Door

Part of the blessing of our new home has been our wonderful neighbors. Today we'd like you to meet two of them: Susan and Janine. They have taken us under their wings and taught us all we needed to know about living in a totally different climate than we were familiar with. During Brian's illness they have helped tremendously by watching out for Ashley after school, mowing the lawn, and giving us rides to the doctor's office when our "California" cars couldn't make it on the icy roads! We are truly blessed to have them living next door!!

Another Doctor

Today we met Dr. Miller, the surgeon who will create the fistula (access for dialysis). Dr. Miller is "the best around" according to Dr. Wahba. The outpatient procedure will take place here at Samaritan Albany General Hospital next Tuesday afternoon. As Dr. Miller explains it, it will be a fairly simple procedure - not even any stitches...just glue! Weird, huh? This is much different than the artificial graft Brian had in 1993 when he first did hemodialysis.

If you're interested in learning more about fistulas or anything else related to dialysis, this is a very informative website: www.davita.com

Welcome!

Welcome to our newest adventure. We hope you will share our journey with us, as we know it will be full of miracles...big and small! As we embark on this journey we hope to be intentional in acknowledging each and every gift from above, no matter how small or ordinary it seems to be.

In case you aren't up to date on what's happening in our lives these days, here's the condensed version...

After many months of testing, doctors determined that Brian had a fungal infection called histoplasmosis which had made itself at home in his transplanted kidney. Efforts to treat the infection with drugs seemed to be successful at first, but the infection reared its head again and began to damage the kidney further. As our wonderful nephrologist, Dr. Wahba puts it, "This kidney is fatigued." (By the way, Dr. Wahba is one of those BIG miracles we have already experienced on this journey...he is a highly respected nephrologist from OHSU (Oregon Health and Science University) who moved here to Corvallis just when we needed him!) We are so thankful for his dedication and expertise.

Because of all this, we are now getting ready for dialysis again. Our hope is to eventually be able to do daily hemodialysis at home.