Dave's Returns from NYC with too much information

PKD Conference for Parents with Children

This conference was meant for parents with children to come together and learn from the experts on what having AR and AD PKD means for their little ones.  Approximately 20 parents attended with five specialists including: Chief Pediatric Nephrologist (Kidney doctor), Pediatric Hypertension specialist (Blood Pressure), Pediatric Hepatologist (Liver doctor), a renal dietitian, and a pediatric social worker. Dave walked away with so much insight we now have a gameplan for Logan's blood pressure and how we ensure we are part of the next round of genetic testing at the National Institute of Health.  We also walked away with the continuing realization as to how unique this disease is and how there are so many unanswered questions around it. Every form is slightly different which makes it insanely difficult to map the DNA for finding a treatment or cure.

Good news:

1. Talvaptan medicine currently under testing for treatment of ADPKD is basically a crap ton of water being pushed through the system. The recommended amount of water a day is approximately 4 L or 120 ounces for our little Logan.  
2. Caffeine exacerbates the growth of the cysts so we need to cut down on chocolate and coke is completely abolished now from our home. (Haven't let go of coffee yet)
3. Lowering blood pressure to under the 50th percentile can add 2 years of Kidney function for every 5 years of life. *As I said we have a gameplan.
4. The entire conference was recorded and will be posted in the next few weeks. 

The best part of the whole conference was meeting parents with children similar to where Logan is and sharing stories.  Surprisingly we weren't the new kids on the block either.  One couple had found out a month ago their four year old has it.  Dave shared knowledge and we received knowledge. It was a great event.

In other news: September 22nd is the date for the PKD walk this year.  Dave and I are coordinating so save the date.  

PKD Leadership Conf. Day 1

This PKD Leadership seminar has been very eye opening and very heart wrenching. I have been shocked at how flippantly death is discussed here.  It makes me realize how sheltered my life has been up to this point and how completely unprepared I am for what lies ahead.  With stories of a 6 year old going blind from kidney/liver transplant gone bad to a 6 year old maintaining 7 years of 100% kidney function up to his 13th birthday, I am slowly beginning to realize that there is no normal outcome for this disease. There is depression, extreme pain, multiple organ transplants, side effects of the transplants, dialysis, and even death imminent for my beautiful baby boy.  As a mom I am supposed to fix this.  I am supposed to make it better and I am helpless. I have learned a great deal about the disease from the people here and I have enjoyed talking to them. At the end of all this they will make me stronger and able to help Logan more.  They will also provide a great support network for Dave and I when the hard times start to unravel.

Good news -- Logan's most recent set of blood results came back with 100% kidney function. His blood pressure isn't great still but has dropped.  We are going to keep trying to lower it.

As always thanks for thinking about our family and keeping those positive thoughts coming our way.

Ann

More drugs for the little one

This one is a little late.  Last friday we had to go back to the doctor because his blood pressure was still not under control.  We got put on additional medicine to help bring it down.  We were smart enough this time to ask about side effects.  This new medicine can cause a dry cough, increase in potassium levels, and a potential to worsen his kidney function.  So we are still on the big gum medicine and this new medicine that requires us to go next month to check potassium and kidneys again.  He said we are keeping our February appt to check kidney function too.  The next ultrasound will not be for a year.

In addition Dave and I have been asked to coordinate the PKD walk for Dayton/Cincinnati for 2013.  This will be in September.  We are hoping to have it be even bigger than last year. We are very excited about this and will be going to Kansas City in Feb to meet the board of directors and Chiefs of the foundation for a weekend.

If you hadn't heard there was a break through this year for ADPKD with a new trial drug called Talvapan.  It is NOT a cure but it seems to be slowing down the growth of cysts. This is only in ADPKD patients and we are still assuming Logan has ARPKD.  We can do the DNS testing to find out but it costs $5000 and is not covered by insurance. This test would currently not help us as talvapan is not perscription ready.  More tests will continue in 2013. So we are holding off on the test.

As always we appreciate you reading this and keeping up with what is going on with our family.

Love and hugs,
Dave and Ann

More good news than bad

The doctor got back to us today and said the size of the cysts were approx the same. They have not spread into any other organs which continues to suggest Logan ha the recessive form of the disease. Logan's blood pressure medicine is still not helping so we will be addressing that with the doctor this week. Logan has started to complain more about his back and his side which hurts my heart a little but mostly he is still in great spirits.

We attended the webinar for children receiving kidney transplants, which I know some family members did too, and gained a ton of insight as to what to expect. There is another one on December 13th regarding obamacare's impact on pkd. If you are interested in attending please let me know.

I still cry a lot but am getting stronger with each conversation I have. Thank you for your love and support.

Ann and Dave

A little frustrated

Logan had another doctor visit yesterday.  Dave went while I stayed with Ethan.  Long story short the urinalysis came back the same as before but the medicine for blood pressure isn't helping at all.  So we are supposed to continue to increase it doubling what he is taking now.  In addition, one of the side effects is that his gums are growing.  Dave asked will they stop after he gets used it it.  The doctor non-nonchalantly said "No, he'll need to get a dentist to laser them off once they get too big.  Excuse me?  Do you know how painful that is? So the medicine has been quadrupled and all we have to show for it is a new issue that will cause Logan pain.  At what point do we consider switching?  Dave asked this and the doctor's response was, "Let's give it a little while."

So Dave and I have to figure out how to take blood pressure of a 3 year old accurately even though the nurses at Children's don't trust their results. The automatic blood pressure machine we got for Logan doesn't work on his arm as it continues to pump the air way above 200.  Manual it is. The doctor said when he is active his blood pressure will be high, so we should try to take it after he has been resting for a while.  Uh... he is 3 dude.  The kid doesn't stop moving.

We have been given the ok to get an ultrasound anytime between now and four months from now when we see the doctor again.  This will tell us the growth of his kidneys and if the cysts have spread to other organs.  If they are in other organs it is an indicator that he has ADPKD.

On a happy note, Logan is still in great spirits.  We are stilling being shown a lot of support. We'll continue to keep you posted.

Ann and Dave Wiesman

Emotional roller coaster

The walk approaches. Please join us if you are available. Http://tinyurl.com/loganpkd

This week has been tough. I began doing more research on kidney transplants and found out children with Logan's disease are twice as likely to die from rejection than those who get transplants for other reasons. Turns out the disease is prone to bacteria. With that said I couldn't bring myself to look up the actual percentage yet. Even a low number seems too scary. We bought a blood pressure cuff and stethoscope to start monitoring Logan's blood pressure at home. I still don't know how to use it.

On a much more positive note, one of my coworkers organized a donation fund across my entire department and raised a large pool of money in honor of Logan. I love Kroger! My teammates genuinely seem to care. Logan's daycare/preschool, Goddard in mason, is doing a basket fundraiser the week before the walk. The director of the school switched her vacation days to ensure she would be back in time. Currently there are six teachers and their families joining us on the walk. Again I am dumbfounded by the overwhelming support. Finally, Westshore Pizza, wants to do a donation drive for Logan where a percentage of every pizza sold on a specific day would go to the foundation.

I have been bipolar thIs week. My family is so fortunate to have such wonderful people looking out for us, lending an ear and open arms.

Logan's third doctor's appt

We had Logan's third doctor's appt today.  His bloodpressure has dropped but only slightly.  It is still high.  The doctor recommended we purchase our own blood pressure cuff and start monitoring ourselves. We asked if the drop in blood pressure would slow the growth of the cysts and the doctor said the two are completely unrelated. The amount of blood in his urine increased slightly but again the doctor didn't seem concerned about it.We are extending the next doctor's appt two months out. In two months blood work will be done again to check function as well as blood pressure.  Two months after that we will have a full abdomenal ultrasound to check the size of his kidneys and see if the cysts have spread to other organs. If they have spread it will be an indicator that Logan has the dominant form of the disease which isn't as aggressive.  However, our doctor said he was 93% certain it was the recessive form at the first visist.

We have spoken to some of you about a private fund for Logan in the event a kidney transplant would be needed.  The doctor explained that Medicare will kick in and take care of whatever our insurance doesn't in the event of surgery.  Dave and I need to do more research on this but it was explained to us that PKD is a special disease that Medicare offsets funding.  Who knew?

Logan seems to be in great spirits.  He is growing well and a few friends have said "his belly looks smaller". He has only complained about his belly a few times in the last month.  He has no problems wrestling with Ethan and jumping on daddy relentlessly.  Typical two year old.

Dave attended the PKD Local Chapter meeting to discuss the walk held on September 23rd. The support from family and friends has been phenomenal.  We shocked the chapter group with the number of walkers we have estimated based on word of mouth in addition to those who have already signed up. We are so fortunate to have so many care about our family.  If you are interested in joining the team please do not hesitate. http://tinyurl.com/loganpkd

Special thanks to my sister, April, who created custom racing bibs for those who will walk with us.