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October
4
2018

Update UCSD...

Sara is doing well.  They were able to get three places opened.  Her pressures are still mild and they believe with time and remodeling of her lungs her pressures may improve even more.  The best part is that her heart is back to normal so we don’t have to worry about heart failure right now.  The doctor also said that she should be able to have a baby with no problems.  They said as of right now they couldn’t do any more treatment.  They said she is young and they are developing new treatments all the time so they may have something for her later in life.  She is doing well and is happy.  We also got to meet a couple from our CTEPH Facebook at UCSD which was really nice.  Thank you for all your prayers and support over the years.   It has really helped us.  Sara’s has a lot more adventures and dreams to accomplish and I know she will achieve all of them.
September
26
2018

BPA #3

Yesterday was a full day of testing and  then we saw the doctor.  The echo showed that her heart was back to normal.  She had her BPA #3 today.  We have not seen the doctor yet.  She said from what she can remember they worked on her left lung.  The two they did last time were still narrow so they use a bigger balloon to open them up more.  Her pressures were the same so hopefully this procedure lowered them a little.  We will be staying the night here.  The doctor will come by in the morning to show us the pictures of what he was able to do.  Thank you so much for all your prayers!
September
18
2018

Almost time again...

We leave on Saturday for San Diego.  Sara has a full day of testing on the 25th and we see the doctor that afternoon.  She then will have her first procedure on the 26th.  The original plan is to start with the right lung and then do the left lung the following week.  After the testing, we will see if that is still what they plan to do.  These are suppose to be the last two as long as everything goes well.  I am curious to see the results from the last two.  I am hoping her pressures went down even more.  She seems to be doing well.  Alex and her just got back from a week long cruise celebrating their anniversary.  She climbed stairs better than she did before which has been amazing.  We are so thankful for the doctors who have given her back her life.  She is able to do so much more than we thought she would be able to do.  Now to get these last two procedures done so she can accomplish the rest of her dreams...  Thank you for all your prayers as we continue this journey!

May
14
2018

Right Lung

Yesterday we got a good sign when we took Alex to look at the train station.  Alex pointed to the departure sign and said look three 7's.  It was train 777 going to San Luis Obispo where my grandma Birdie was born.  She has always been our angel watching over us.  I have been seeing 7's all day.  Sara was in the Cath Lab longer than the last time so I was getting a little anxious.  They spent more time because her right lung has always been the worse.  We have not talked to the doctor yet but the PA came by and said they were able to open three vessels on the lower lobe and one in the middle lobe.  She is laying flat until her blood thinning levels come up and they are able to remove the sheath.  It has been leaking blood from the site so they put gauze around it to keep an eye on it.  She seems to be doing well.  They said it will be awhile before we see the effects from these procedures. They took blood and are doing an X-ray now.  She will have to come back for more procedures in a couple months.  Thank you for all your prayers.

May
13
2018

Tomorrow is BPA #2

We are all scheduled for tomorrow.  We have to be at the hospital at 6:30.  Since we had an unexpected break in between the two procedures with the strike, we took a little drive up the coast to see my family.  It was nice not to have to stay in a hotel for the whole time and relax a little and see some of the sights along the way.  We needed to make sure Sara got out and walked a little to avoid getting clots.  Since we didn't plan on being here this long, they put her back on her blood thinner pills.  She didn't have enough shots to cover the three weeks which was fine with her because she hates the shots.  She had to start them up again yesterday in preparation for the next BPA.  She said that she doesn't really notice a difference yet but Alex and I do.  She seems a little less short of breath while walking stairs.  They say it takes awhile to see the full results due to the lungs having to get use to the new blood flow.  Her right lung has always been the worse so maybe she will notice more after the next one.  We will have to come back in a few months for #3 and #4.  Hopefully after those two, she won't need anymore and her pressures will go back into the normal range and maybe get off some of her medicines.  She has always been a fighter and she is determined to get better.  Since this is such a new procedure, there is not a lot of data on the long term effects but if it gives her more time and a better quality of life we are all for it.  They are adding her to their research study and are going to follow her for five years.  Hopefully her information will help someone else. We did find out that they have treated other patients with our rare blood disorder.  They still have not determined a cause for the clots other than not having a spleen.  We are just thankful that they keep looking for ways to improve the lives of people with CTEPH.  I hope everyone has a wonderful Mother's Day.  Thanks for all the love and support over the years.  Please say a little prayer tomorrow for Sara.  I will post an update after we talk to the doctor.
May
2
2018

Just when you think...

Just when you think everything is going well, something has to happen.  Due to the impending strike, they cancelled the second procedure and rescheduled it for the 14th.  We are hoping that they don't strike and they are able to put us back on the schedule.  Melissa graduates next Saturday so Alex is maybe going to fly home and then fly back.  It is just a mess changes all our plans.  Keep us in your prayers! We are still waiting for the doctor to see what they were able to do and to be released from the hospital.

May
1
2018

Great News!!

Dr Poch was able to open up two branches in her lower left lung.  He said he didn't have to dig very much and was able to separate the clots and blood started to flow.  Her pressures also were lower than the original heart cath from 29 to 23 so maybe these procedures will bring her back to normal.  Thank you for the prayers.  We will get to see the pictures tomorrow of what they actually did.  He was really happy though with the results.  Next week will be the right lung as long as no strike!

May
1
2018

Everything Is A Go!!

Everything went well with testing.  We could not believe how on time they were.  They were either early or right on time.  We met Dr Poch who will be doing the procedures.  He was very nice and explain everything to us.  He answered all our questions and put us at ease.  We did have one problem. He informed us that the medical staff had voted this morning to strike! It just happens to be the days when she is scheduled for her 2nd BPA.  We don't know what is going to happen but we are hoping they don't strike.  As of right now,  they are going to work on her left lung tomorrow and her right lung next week.  We also found out that the filter they put in place to prevent more clots from traveling to her lungs is attached to her vessel wall. We thought maybe they could
remove it because we were told a few years ago that it had shifted.  The doctor believes it would be more harmful to try and remove it then to just leave it.  We won't know how many procedures she will need until they finish with these two.  Keep the prayers coming especially about the strike!!