John Baker Update. 12/29/2011. 7:45 PM

John is happy to be out of the hospital however we are still part of the frequent visitors club. We were there most of Wednesday, and will be most of Friday, and most of Sunday. His creatinine is still holding at 1.4. We need to see 1.0 or less. His B.U.N. is down to 22. We want 20 or less. His hemoglobin is up to 8.7. We would like at least 11.0. Friday and Sunday will include plasmapheresis and a dose of eculizumab for antigen therapy. The hope is that the liver will began to absorb the antigens that attack the kidney thus protecting the kidney. We still need your continued prayers.
Thank you.

John Baker Update 12/26/2011 1:45 PM

John had an ok night. His creatinine and B.U.N. is same as was the 24^th. His hemoglobin is up to 7.7 from 7.2 on the 24^th. He is getting plasmapheresis today and eculizumab following. He has three more treatments after today and then they will re-evaluate the treatment plan. They are discharging us today and John will sleep in his own bed tonight. We will come up Wednesday and Friday for treatments.  

Your continued prayers are appreciated.

Thank You very much.

John Baker Update 12/25/11. 10:15 AM

Last night was about the same as the night before. They did not draw labs this morning except for tacro levels. They will draw labs tomorrow when they do plasmapheresis. They removed his central line about an hour ago so we are free to go out on a four hour day pass. That means we are close to discharge. I suspect Monday or Tuesday we will be discharged. Take notice that I did update the blog yesterday evening. Please continue to pray for John. We love you all and Thank You for your prayers.
Merry Christmas Everybody.

John Baker Update 12/24/2011. 6:45 PM

Hmm. Well good evening. It seems I neglected to update the post this morning.
Well John had another fairly restful night.his arm is perhaps slightly better. His creatinine is down it 1.4 and his B.U.N. is down to 25. He did have plasmapheresis today a will have every other day for four more treatments with antigen therapy to follow.
Gabe, Lizzy, and the kids are here this eve for our traditional Christmas eve time together.
God is so good to us. We are greatful for our friends and family and all your prayers.
Thank you.

John Baker Update 12/23/2011 10:15 AM

Good morning.
John had a reasonably good night and slept well.
His arm pain is decreasing for the most part and motor movement is increasing.
His creatinine is back down to 1.6 from 1.8 yesterday. His B.U.N. went down to 34 which is an awesome move in the right direction.
His hemoglobin is up to 7.3 from 7.2 westerday. Yesterday they started him on darbepoetin alfa, (commonly called darbe and otherwise known as aranesp,) instead of epoetin.  Darbe is a synthetic version of epo.
We will not be discharged till at least Monday as he still has to many things that need watched.

We love you all and Thank You for your support and prayers.

John Baker Update 12/22/2011 11:50 AM

John had a good nights rest last night. For his arm pain they are giving him pregabalin which is a cousin to gabapentin only the side effects are less invasive. I seems to be working. He is on very little pain meds other than that. He also seems to have gained motion and strength in that arm in the last 24 hours or so.

His creatinine us up to 1.8 from 1.6 yesterday.  This is not good however the anti-rejection drug tacrolimus could raise the creatinine if the tacrolimus level is over the prescribed target in the bloodstream as it Is an accumulative drug. They will be checking the tacrolimus (hereinafter refered to as tacro) levels today.  His B.U.N. is 40 as was yesterday.

His hemoglobin is 7.2 which is down from 9.1 on Tuesday. They draw about 15cc of blood daily for blood work. The kidney produces a hormone called erythropoietin that controls red blood cells. It is appropriately assumed that the new kidney is not producing adequate amounts of this hormone. They will begin giving him Epoetin alfa commonly called Epo, which is a manmade version of the natural hormone, until the kidney takes over.

The H.L.A.  (Human Leukocyte Antigen) levels in his body are still on a plateau. It is good that they have not risen but they need decreased. We will still continue plasmaphresis and doses of eculizumab on a scedual of every other day at this point in hopes to reduce the HLA’s in his body until the liver begins to absorb them.

John is feeling good and getting around well. We haven’t any definite info on a discharge date.

Thank you for your prayers.

John Baker Update 12/21/2011 12:45 PM

John is still progressing in the right direction. His creatinine is down to 1.6 from 1.7, a small an=mount but still progress. His B.U.N is down to 40 from 46 yesterday.He is mostly on oral fluids and a goal of 2 liters a day minimum. His urine output is keeping up nicely. His arm is going to be a very slow battle. We are still waiting for an MRI to access the nerve damage however the information  obtained will more than likely not change the direction treatment, but will hopefully be very informative. John is getting around much better, doing some walking and such. We don’t know about discharge in Thursday  yet but It appears to me that Friday or Saturday has more potential.

Thank you again for your love and prayers.

John Baker Update 12/20/2011 1:35 PM

Well Lori didn't get an opportunity update yesterdays events so we will bring you up to speed.

John is feeling better all the time except for his arm. With his arm we have a long road of therapy with hopes of full recovery but no guaranties. They are going to do an M.R.I. today or tomorrow to locate and evaluate the nerve damage. Gabe, Lizzy, and the kids were here to visit yesterday afternoon / evening. It is the first time John got to see Aydrien and Aneisha  since the surgery. They had a great visit.
His creatinine was 1.9 on Monday and 1.7 today. His B.U.N. 57 on Monday and 46 Today so things are moving in the right direction. He is eating better so they will take him off of IV nutrition (TPN) this afternoon. They will not do plasmapheresis today but will tomorrow and then every other day for the next 14 days

More good news is that they will able to do this as an outpatient so we may get discharged on Thursday.
Thank You for your prayers.

John Baker Update 12/18/2011 12:36 PM

Sunday morning. Sorry about no update  yesterday. I guess we got lazy.

On the emotional side of things John is happy,  not happy,  happy,  not happy,  happy,  not happy, happy,  not happy.  Prednisone tends to give you mood swings, however things are improving. From a liver standpoint things are looking excellent. From a kidney stand point things are improving. His creatinine went from 3.4 on the 16^th to 3.2 on the 17^th and is 2.5 this morning. His BUN went from 110 on the 16^th to 93 on the 17^th and is 76 this morning. His urine output is increasing. He will continue Plasmapheresis treatments and eculizumab for anti rejection therapy for the next five days. His left arm still gives him a lot of pain but motor movement is slowly improving. His two hurdles for today and tonight is eat good and sleep good. In the study of genetic trends in our family at least on the Baker side eating should not be a problem. As far as sleeping they will plan a medication strategy.  We want to thank everyone for your continued prayers. They are much cherished.

John Baker Update 12/16/2011 1:14 PM

Good Morning

John had an ok night. This morning his creatinine and B.U.N. was the same as yesterday, which is good they are not up. His antibody levels were down 15% which is good. They will continue plasmapheresis for the next seven days with a dose of eculizumab following. We are hoping for a reduction in antibodies through this process. His liver lab numbers are doing good. The liver is continuing to progress towards full function. In theory it should help protect the kidney from rejection damage. His blood counts are in the ok range, they should improve with time. He is back on solid foods with talk of IV TPN to supplement nutrition. His liquids are taken in orally and IV. Neurology looked at his left arm this morning. their thought is that his arm will recover over time with much therapy. They may do an MRI to see if there is pressure on the nerves still but I will hear from them later on that. I have persuaded them to do therapy every day instead of two or three days a week.

Thank you.

John Baker Update 12/15/2011 9:45 AM

As for the upset stomach the iv meds  for nausea seem to help tremendously. He got a fair nights sleep. He is doing plasmepheresis again this morning and will be getting another dose of eculizumab following. They will give him the nausea meds prior to the eculizumab  since we believe the eculizumab is responsible for the upset stomach. His antibody levels are stable but not low enough. We are still fighting rejection. His creatinine is up to 3.3 from 2.6 yesterday which is not good. Most of his fluids are IV and he is off solid foods for this morning. His left arm is very slowly getting better as far as movement but is in a lot of pain. Thank You for your prayers.

John Baker Update 12/14/2011 7:50 PM

John had plasmapheresis this afternoon and then they replaced the Medication eculizumab as the plasmapheresis removes it from your system. As mentioned in the last update his stomach was upset and we think it is from the eculizumab. He is not able to hold down food or drink so they gave him an iv Nausea medication. If that does not do enough they will give all his meds iv as well as fluids and nutrition. Say a prayer for him. He is quite miserable.

Thank you.

Juhn Baker Update 12/14/2011 12:15 PM

Good morning

John was moved out of the icu yesterday evening around 7:00. He had an ok night. His stomach was uncomfortable and he slept ok. The did an ultrasound of his abdomen this morning to make sure everything looked good. All appears to be fine. He is holding extra fluids in his tissue that is not getting to his blood stream because his albumin is low, thus he has gained water weight. They will target for 2 liters of oral fluid today instead of 3. His albumin will rise In time as the liver continues to work, thus pulling the fluids into his vascular to be removed by the kidney. His creatinine level is 2.6 the same as yesterday which is good, (not rising) but it will eventually drop lower as his body stops fighting the kidney. He is going to have plasmapheresis again today. He is feeling a little lethargic  today but we will see what the day brings. Thank you for all your love, prayers and kind comments. It is all much appreciated.

John Baker Update 12/13/11 1:35 pm

Hello Everyone, Good news! John gets to leave ICU today. We are just waiting for an empty bed. He is getting plasma foresis in a few moments and then will get another half dose of eculizamab. He is not a candidate for the bortezomib. His platelet count is too low and the particular antibodies he is making come from his bone marrow making it ineffective.
His numbers look better today, his creatinine is down to 2.6 from 3.0.  His antibodies are not less, but they have reached a plateau. We are hoping after this foresis treatment and another dose of  eculiamab his antigens will start to trend down.
He will be able to have more than 3 visitors at a time when we reach the floor, we are all looking for that.
Thank you for your prayers.

John Baker Update 12/12/2011 9:40 PM

John had a good day today, he was able to get up and sit in the chair. He got a dose of a new drug to help stop the rejection process called eculizumab. This happened around midnight. He had no adverse side effects from this treatment. It will take a few days to see if we get results. There is also another drug they may use in conjunction called bortezomib. Eating and drinking is unrestricted at this point. His blood sugar is high, probably from the steroids. They are giving him an IV insulin drip. He has had some visitors today. He enjoys visitors. It has been a fairly uneventful day otherwise.  Thank you all and good night

John Baker Update 12/11/11 7:15 pm

Well, more hurdles to overcome; John is rejecting the liver and kidney. He has alot of antibodies due to the previous transplant and multiple blood transfusions. However, there is a new drug that has shown to be successful in stopping the rejection process, eculizumab.  I am posting a link to an article from Mayo clinic on the success with this drug regarding transplants. It is a very new drug and has been used very little in regards to transplants but it is the drug that is needed to fight the particular antibodies that Johns body is making to cause rejection. We are praying it will be effective.  There are risks involved but the benefits outweigh the risks.   John is such a trooper, he cried a little when we got this news, (so did I) but we know it's all in God's hands. It always has been. We will start the medication tonight. It will be here around midnight as it has to be brought over from Spokane. We don't know how long he will be on this medication. It will depend on what his blood counts show us. It is a once a week dosing for 5 weeks, then it will change, see the Wikipedia article for information by clicking the Hyperlink eculizumab.
We love you all, keep us in prayer.

John Baker Update 12/11/2011 12:15 PM

Good morning. John had a very restful night. His creatinine level is dropping, his blood levels are climbing. The internal bleeding is stopped.   He has been drinking all he wants and eating as well although he isn’t very hungry right now.  Mom made him his favorite dish, he ate a couple of bites. He’s a little tender today but has pain med when he needs it. His left arm is about the same.  He’s awake and can talk on the phone if you would like to call. We give you all our love and thank you for your prayers.

John Baker Update 9:05 PM

There was a change in plan of care for John this afternoon. Due to evidence of continuous internal bleeding, and due to elevated creatinine level, and elevated bilirubin level, also the need for a kidney and liver biopsy, the surgeons and medical team decided that exploratory surgery would accomplish the most in the least time and be the most informative. John was not excited about that. They took him into surgery about 3:00 PM and was out about 5:45 PM. They found a source of bleeding which they sutured and a few smaller bleeding collaterals that the cauterized. They removed about one liter of old blood and clots from inside the surgery area. They got a biopsy from the liver and the kidney. They were very pleased that the liver and kidney looked very healthy still. We will get reports from the biopsy Monday. This was a very good decision and has had good results. John is feeling good now and is sleeping restfully.  John was allowed to take liquids immeiately and if that goes well he can take solid foods in the morning. Thankyou for all your prayers and support.

Steve, Lori and John.

John Baker Update

Good Morning:

Things have taken a little downturn this morning, however we are not at the point of panic or despair by any means.  Johns hematocrit dropped to 27 and his creatinine is up to 3. He is NPO until this afternoon at least. They will be taking him in to do a biopsy of his kidney and possibly his liver as well. He will need more platelets. Right now as I write this he is getting another ultrasound, which takes about 2 hrs. and also plasma foresis, which takes 3-4 hrs. He is in good spirits and is being a very good sport about it all. The plan is to hydrate him IV and orally. The nephrologists think that although he has fluid on board it may not be in his blood, thus causing the higher creatinine level. They are diligently working on solutions. This may be a rejection episode, however there are ways to counteract that if it is. His first transplant rejected in 1996, and they were able to reverse it then. Thank you for your continued prayers.

John Baker Update 12/09/2011 12:25 PM

John had another restful night. His antibodies are still up so they will do plasmapheresis again today as well as tomorrow and sunday, a procedure in which they take the plasma from his blood and replace it with donated plasma thus reducing the antigens. His hematocrit is at 31 this morning. He has had four units of blood since yesterday. He will get more platelets today and possibly a transfusion. There is not enough internal bleeding to justify the struggle in keeping his blood count up so they are still working on that issue. As far as his left arm, they are still doing occupational therapy and there is some more improvement as of this morning. it still appears that over time the arm will recover. Urine  output is still good as yesterday and his creatinine is 1.9 which is acceptable. Oral fluids are still somewhat restricted as he gets a fair amount of IV fluids with Transfusions, Platelets, Ect

He is a little less positive today so please keep him in prayer.

Thank You

John Baker Update 12/08/2011 11:55 AM

John had a restful night. This was his first restful night since surgery. His antibodies are up slightly so they will do plasmapheresis again today, a procedure in which they take the plasma from his blood and replace it with donated plasma thus reducing the antigens. His hematocrit is down to 22 this morning from 26 last night. The somewhat concern is internal bleeding from the surgery but he is not symptomatic. Other possibilities is that the kidney is not yet producing enough erythropoietin which helps the bone marrow produce red blood cells. If that is the case it should kick in soon. They have done a CT scan this morning to rule out bleeding but we haven’t the results back as of yet. If his hematocrit continues to drop they will do a blood transfusion later today. As far as his left arm, they are doing occupational therapy and there is some more improvement this morning. it appears that over time the arm will recover. Urine  output is still good and his creatinine is still 1.8 which is acceptable.  He will hopefully be allowed around 1500 ml (50 oz or 6.25 cups) of oral fluid today

He is in fairly good humor this morning and will be happy to get out of the hospital

John Baker Update 12/07/2011 10:40 AM

John is doing well this morning. His kidney is doing fantastic. His creatinine is down to 1.8 from 3.0. His urine output is very good.  His hematocrit is doing well. It appears that the internal bleeding has stopped as his blood count is on the rise. On the down side his antibodies are up this morning which means his body is wanting to fight the transplanted organs. This is not a panic mode but they will add an immuosuppressant drug to stop his body from making antibodies and do I.V.I.G therapy as well. Yesterday he was on clear liquids, only 250 ml (8 oz) for 24 hrs. In case you haven’t tried that, its not very much. Most of his fluids were coming from IV Meds and nutrients. Today he is a happy camper as he can eat real food and is allowed 2000 ml (8 cups) between now and 6:00 AM. They are removing most of the IV meds and nutrients. They removed the foley catheter this morning.  He is able to get up and sit in a chair more. His left arm is possibly getting a little better but we would like to see faster progress. Full recovery of the arm is hopeful  at this point but not guaranteed. They are putting a splint to hold the wrist and fingers in the natural position and we will continue physical therapy at this point. It appears that he may get out of icu tomorrow. God bless you all for your Prayers, Love  and Support. We Love you all.

John Baker Update

Well we have good news and some bad news: We were present when the Dr.s rounded this am. They discuss all aspects of John's progress, regress and care. The good news is his hematocrit is better, though still not where he should be and he will recieve 2 units of blood and a unit of platelets this morning. The other good news is his creatinine is at 3, which is lower than yesterday when it was at 4. This is one way to measure his kidney function. He gets to have a few popsicles today which makes him extremely happy.
The bad news is, his arm is still not functioning fully and there is no gaurentee of complete recovery. I am asking you all to pray for total healing in his arm. He has nerve damage in his brachial plexus, we don't know if the nerves were just stretched or actually torn, but we do know a God who can heal. Meanwhile he will be put on a medication to relieve the pain and continue with physical therapy. We are still in the ICU. Again, thank you for all your prayers and support.

John Baker Update

Today has been a busy day for John, He had another ultrasound early this morning, then Physical therapy for his arm.  Neurology came to look at his arm. He also got up and sat in a chair for 40 minutes. It was quite an effort  but he did well. They moved him to a bed that will go with him when he leaves ICU. He is still unable to eat, but it shouldn't be much longer before he can start having clear liquids. His blood counts remain low, but not signigicantly lower than this morning. The surgeon says the blood loss is to be expected with this type of surgery. Please feel free to send comments, John would like to hear from you. Thank you.

John Baker Update

Good Morning!
 John is doing well. There is always alot of fine tuning and adjusting with the first week after transplant, and becuase he has 2 new organs there is even more adjusting than normal.  He is still not able to eat by mouth, however they did start IV nutrition. His blood counts have been low, even after transfusion. It could be from internal bleeding, oozing slowly from the surgery, or it could be that he is so fluid overloaded that it is diluting his counts. The plan is to do another ultrasound to check for bleeding and also to limit his fluid replacement and hope to get more fluid out. Once he reaches a weight that is more normal for him we will know better where his blood counts really are. He will be in ICU for today and if all goes well, maybe on the floor by tomorrow or the next day.
He's enjoying his new I-Pad.... His arm is slowly gaining more feeling, Physical Therapy will be in to help him exercise it. It is more painful right now than the surgery.
Over all John is doing very well.
Thank you all for your prayers and support. We love you!

John Baker Update

Hello everyone, not too much has changed since the last blog, John is doing well, the Dr.s are very pleased. The neurologist checked out his arm today. They expect it to get better with time, this is evidently a common occurence after surgery, especially such a long one as John's was. He is getting another treatment of Plasma foresis as his HLA (Antigens or anitbodies) were slightly evelvated. This is just extra insurance to keep the organs from rejecting. He is still npo, (no food), pray his stomach will wake up so he can start eating, he's getting a little hungry. They have increased his Sodium and Glucose IV intake but it just can't replace food.

John Baker Update 9:20 pm

Doing well this afternoon. Has had therapy for his lung and its doing better. He still has limited feeling and movement in his left arm. The Drs. are saying that it is probably temporary nerve damage. They expect the full use and feeling will return with time, however we are pushing for neurology to check on it. He's getting immunosuppressant drugs as well as some pain medication. They have stopped the medazolam, which is a pain med that also causes you to forget.
He can recieve texts if you would like to say hello.

John Baker Update 3:37

The tube is out! John is very happy about that, he can now talk. His left lung sound was diminished so he had an x-ray. He is able to breathe without any oxygen.  His kidney is putting out very well. He won't be able to eat or drink for at least another day. They will be checking his liver functions to dertermine how soon he can eat.  We are slowly eliminating tubes and machines, still has alot of IV's and medications.

John Baker Update 9:35

Drs just finished rounding. They are pleased with everything so far. John will get another ultrasound of liver and kidney in about 15 minutes. They will want to look at this before they take him off the ventilator. He is very anxious to get the tube out. He's awake but very sedated. He will remain npo (no food by mouth) for today, but if extubated (tube removed) he will be able to eat tomorrow. 

John Baker Update 9:05 am

Good morning everyone, John had a restful night. His kidney is working with a little help from the diuretic, which is normal, we expect it to kick in and do well, the organs also have to recover from the trauma of surgery. Drs. will be 'rounding' soon and we will know more. John was able to help the nurses turn him so his strength is returning a little.

John Baker Update 6:15 pm

The plan is to take John off the ventilator tomorrow. At this time they don't anticipate doing any more dialysis or plasma foresis. It is now a matter of waiting to see how well the new organs will perform.

John Baker Update 2:05

This blog is by Mom, Im in John's room in ICU, He's awake, can't talk but when I asked if he was OK he nooded yes. Everything is functioning as it should so far, has good urine output and liver seems to be working as well. He is getting another plasma exchange and at this moment is gettting an ultrasound of his kidney. He a little puffy but pain is under control. We love you all and appreciate your prayers.  Lori

John Baker Update 12:00 PM

John is doing awsom. he still asleep, Hes is making urine. liver is doing good. He is stable, and wow, what an incision. All the medical team is well pleased with the results.

John Baker Update 9:06 AM

John is now in ICU. The surgeon is pleased with everything. The liver is performing well. the kidney has not started producing yet but it is not unusual for it to take up to 24 hrs to kick in. John will most likely sleep into the night and wake up sometime tomorrow morning. The first week will be very hard for john as this is a major surgery. Thank you for your prayers.

John Baker Update 8:09 AM

They are closing him up now. we are presently awating to talk to the surgeon. I hear that things went well.
Thank you all for your prayers. i will continue posting updates.

John Baker Update 12/02/2011 7:00 AM

Liver is in, Kidney is in, Now conecting kidney to bladder, Johns blood pressure is stable. the operating room nurse says he is doing good,  We will be talking to the surgeon within the hour hopfully

John Baker Update. 11:56 PM The liver is in and conected. they will proceed with ultrasound to check for bleeding and most likely proceed with the kidney.

John Baker Update 9:48 PM

Just got the old liver out and putting the new liver in. They have to make all the connections and then ultrasound for bleeding. Once the liver is intact with no problems they will continue with the kidney. To finish the liver is expected to be three to four hours.
Thank you for your prayers. 

Update 6:15 PM

They are in the process of removing the old liver. From prior surgeries there are adheasions and scar tissue that make it more dificult to remove. it is just time consuming.

John Baker Update 12/01/2011 2:55 pm

John is now under anethesia (Cracking Jokes along the way) and starting surgery. they will first transplant the liver and then the kidney. once liver is transplanted, they will make sure it is stabalized and then proceed with the kidney. this will all be done in the operating room. the surgery total will take 12 hrs plus or minus. he will remain under anethseia till saturday morning or so. He will be in ICU 5 to 7 days and mabey 2 to 3 weeks in the hospital.
I will update as i recieve information

John Baker Update

It is 9:15 am. John is awake from a good nights sleep. We are waiting to move forward with the transplant and he is in good spirits.

John Baker Transplant

Update. John is at Childrens Hospital now on an apheresis machine which removes plasma from his blood and replaces it with donated plasma. donated plasma is less the antigens which lowers the rejection ratios. This is called Plasmapheresis.
He is scheduled for surgery between 8:00-10:00 am thursday dec 1st.
This is a liver kidney transplant. Your prayers are appreciated.

John S Baker Update

Well im not good at keeping this up but we got to leave the hospital fri the 31st at about 3:30 PM. Its been a long week. We hurried home, Dialyzed John,
Rushed off to New Years eve gathering at the church.
Crawled in bed about 1:30am,
Got up about 8:am, Worked on mom and dads broken underground  power line till 7:30 pm, (it failed about an hour before we headed for the hospital on Christmas eve day so they went all week without 220 power and limited 110 power)
ate dinner,
dialyzed John,
went to bed about midnight,
Hurried of to am church,
ate lunch,
Hurried home to backfilled the hole dug for the power repair,
returned the excavator to the rental yard,
returned the trailer,
hurried off to evening church,
went to bed about 11:30pm.
got u about 4:30am,
left for childrens hosp about 5:30, At childrens about 7:30 for a follow up ultrasound,
went to northwest kidney center do dialyze ( had to check pre and post dialysis liver related labs )
Left NWKC about 3:30
Was for some reason very tired when i got home.

Johns appetite is ok. he eats once a day, from about 8:00am to 10:00pm
All is well