Janeís Update April 2018
Jane suffers from End Stage Renal Failure, and is now in her 11th year of Dialysis at the Health Campus. There have been multiple problems over the years. From multiple infections, Abscessís, blood pressure problems, to osteoporosis and multiple broken bones. Due too all the complications, she was removed from the Kidney transplant list in 2005.
has a great attitude and is very positive most of the
time. However due to the osteoporosis she cannot stand or
walk (things will break). She has endured a stay at
Lancaster Rehab Hospital, 4 stays at
is the first update posted in several months. That
is good news, other than an 11 day stay at
Jane has been a little bit of an activist lately. Many people who do dialysis have a lot of problems, health, home, transportation, so they don't speak up when there is a problem, or understand how things affect them. At first was the state budget. When they were threatening to take up to 85% of the budget from the PA Renal program. She even got to meet with a state representative. Then working with the folks at Davita Dialysis in keeping the enviroment as sterile as possible.
In September we talked her into once again trying for a Kidney transplant. Unfortunately we found out in late October that she "is not a suitable candidate for a transplant".
Here are all the details as they happened, covering the last 9 years just as I wrote them at the time.
In late April of 2007 Jane was diagnosed with End Stage Renal Diseases, or acute kidney failure
2007 Jane started the process of getting a
kidney transplant. She has been accepted into
the program at Pinnacle Health in
October 2007, we had to take Jane to the emergency room with a very high fever. We found out the next day she had a Staph Infection. A MRSA Infection. Apparently from her permcath, which had to be removed. She then had antibiotics for 8 weeks.
In late July 2008 Jane was rushed to the Hospital from the dialysis unit. She was diagnosed with an abscess in her brain for which she had a neurosurgery. She had been on the transplant schedule for September 30th.
In late October 2008 Jane had seizures; we again rushed her to the hospital. Several MRI's over the course of a month of so concluded that she had another abscess.
December 2008 a second neurosurgery cleaned out the abscess. 11 weeks of intravenous antibiotics followed (twice a day for an hour each). Also white blood cells scan. Those antibiotics really knocked her down. The whole ordeal really took a toll and her weight and stamina, It took about a year for Jane to get back to what is I guess the new normal.
2009 thankfully was less eventful than the prior two years. Jane did however have some problems with her fistula that required a surgery and 2 more procedures. We spent more than a year trying to get some weight back on and getting her blood levels back to where they would be acceptable for a transplant. Dry. Yang required Jane to go six strait months with an Albumin level at 3.0 or above.
time Jane had been put on a suppressive antibiotic by the
Doctors at Infection Specialists of
February/March 2010 Jane completed her re testing for the transplant and her blood levels were where they needed to be. Her Kidney doctor even called Dr. Yang and told him that Jane was ready, and it was time. However the donor was dragging her feet.
April 2010 On April 4th I had to take Jane in to the hospital. She was again diagnosed with another abscess (in a different place this time). So a third neurosurgery followed. I need to point out that Dr. Yang told her to stop the suppressive antibiotics.
August 2010 Dr. Yang does not believe Jane is cured of the infection. He put us on hold for at least a year maybe two to make sure the infection does not come back.
September - November 2010 in another twist of this saga on Sept. 18th Jane fell in front of the house and broke her right Femur.
April 2011 Jane fell in the bathroom on April 20th and broke both of her knees/legs. She fell around and I came home and found her at .
August 2011 she came home from Manor Care Aug 30 and continued her therapy and rehab at home.
September 2011 Therapy has apparently re injured her right leg and she is having a very hard time getting around. In the middle of everything else, Jane had her yearly appointment at Pinnacle Health, with Doctor Yang on the 12th of September. He informed us that Jane was no longer in his mind a candidate for a transplant. In the fact that Jane must be on antibiotics indefinably, he wonít do a transplant. He is also taking Jane off of the transplant waiting list. Looking at the whole thing, and taking in what Dr. Yang said, it seems to me that he is a doctor not interested in curing the sick, but turning good numbers.
When Jane saw Dr. Adismuielle (no I did not spell it correctly), the rheumatologist on the 20th. We also found out the results of the bone scan. 10 months after it was done. And the bone density level is extremely bad. To me this explains the broken ankle. If the therapists at Manor Care knew the results of that test they would not have been as aggressive.
October 2011 Dr William Parish is her new orthopedic doctor, this guy is like the specialists specialist. His office is only 2 miles from the shop. We saw Dr. Parish on the 18th and he ordered a couple of tests and had us come back on the 25th. Dr. Parish has determined Jane has two brown tumors in her right leg. They are caused by calcium and bone loss and can have the same effect as a stress fracture.
December 2011 Jane has been released by the wound clinic for the problem with her left leg. Dr. Parish says her right leg is good enough to start light therapy. Jane wanted to wait until after the holidays to restart (UGH!)
February 2012 Thanks to a few of our friends, Jane was able to come in for Mardi Gras. Lunch and dinner Monday and Lunch on Fat Tuesday. She really enjoyed spending time at the shop and seeing many old friends.
March 2012 Jane has a new problem with her right thigh. She has an infected sore that is related to her calcium problems (calciphylaxis). Calciphylaxis is very serious and everything else has to take a back seat until we get this under control.
April 2012 The Calciphylaxis sore is responding to treatment and has gotten much better. Dr, Flood estimates it will take another two months for it to heal.
July 2012 The Calciphylaxis sore is almost healed only one or two visits to the wound Clinic, she will be done. Dr Parish the Orthopedic doctor told us we do not need to see him anymore. The Dr Pulliuon changed her blood pressure medicine and things seem to bee a little better. Jane is very much looking forward to spending the afternoon with her whole family on the Fourth of July. She has been stopping into the restaurant some nights after Dialysis.
September 2012 Dr Parish said she has the worst bone density he has seen in 22 years.
2012 Things are
just not what we want them to be as we head into
the holidays. In early
November Jane was in the Intermediate
Intensive Care Unit at
almost exactly a month in the IICU she has been moved to
spent 6 weeks at Select Specialty and is now at Manor Care
has been doing therapy 2 hours a day 6 and 7 days a
week. Even on Christmas and New Years.
She got pneumonia and spent 6 more days in
MARCH 2013 In the second week of March we were cautiously thinking we could start making some preparations for Jane to come home. While doing therapy (standing with a walker) Jane's right leg broke. Both the tibia and the fibula. Because of her extreme bone density problems, she may be in a wheelchair for the duration. She is doing occupational therapy to keep in shape.
Considering the circumstances Jane is in good spirits. The Dogs take turns going in to see her on Sundays. Also the people at Dialysis are going out of their way to take care of Jane and keep her comfortable. We also appreciate the concern and support from Dr. Carroll.
April 2013 Jane's leg is healing well but because of her low bone density she still cannot put any weight on either of them.
June 2013 Jane's leg is healing well but because of her low bone density she still cannot put any weight on either of them. This is a problem that will not go away anytime soon. We have seen the rheumatologist and there is a shot she can get for the bone density problems. We have to work with Janeís kidney doctor to get levels correct. She had a cast for three weeks, they removed it did ex rayís and was healing well. We will go see Dr. Carroll the first week in July for a check up and to explore getting a custom brace made for it. A brace would allow her to put some weight on her leg and get around .
August 2013 The rheumatologist will not give Jane Prolea, she is concerned about calcium levels.
October 2013 Jane will have to stay at Manor Care as we have no way to get her safely into the house. We have worked with UDS (United Disability Services) they have recommended a lift to get her into the house, and the preliminary cost looks to be in 5 figures. We are frustrated with the system as we wait for yet another agency to come and evaluate Janeís condition. She started the process to get the lift in April. Jane has filled out two sets of paperwork, and been interviewed or talked to by 6 different people. It has been passed to another agency that will come and evaluate Jane within the next two weeks.
December 2013 Jane is still at Manor Care as we have no way to get her safely into the house. It is my understanding that everything is at the office of aging waiting for a final approval. We estimate the State has paid enough to Manor Care too install 4 lifts so far!
January 2014 We were told services were approved for Jane but not the lift to get her in the house. "It was not part of the paperwork". I have reached out to a few people to sort this out.
February 2014 We have a new coordinator from abilities in motion. They have looked in to the whole deal and promised to get Jane home.
Jane will have to stay at Manor Care as we still have no
way to get her safely into the house. The waver
services have been approved (to take care of Jane when she
comes home). We are now working with abilities in
motion , supports your way, and
On the medical front, we are still exploring ways to strengthen Janes bones, and make it safer for her to get around. Dr, Somerman the nephrologist has recommended a procedure called Tetracycline Labeling, to try and define exactly what is causing the problem. We have been trying to get Dr. Somerman and our orthopedic doctor together to get this done since October. UGH!
APRIL 2014 I did an end run and got in contact with another doctor who we saw on april 3rd. He is on board and has no problem doing the bone biopsy that is needed. The last week in April was a mixed bag. Had the best Easter in Years. Then, Jane had a problem at Dialysis and spent three nights in the hospital after Easter. All the tests were negative and she is fine. On the same day she went to the hospital we got word that all the home modifications have gotten approved. This means we might get her home before Memorial Day!
MAY 2014 On Thursday May 1st Jane had the Bone Biopsy that we have been trying to get done for 6 months. Many thanks to Dr. Parish. The sample was sent to Johns Hopkins to be analyzed. This may help with the ongoing bone density problems.
June 2014 on the medical front, Dialysis is going better. Jane did finally have the bone biopsy, thanks to Dr. Parish. It took Johns Hopkins almost 7 weeks to get the results back to our doctors, but they have them now and are evaluating the whole situation. Hopefully they may be able help Jane's bone density so she doesn't have to worry about breaking something when she stands up.
July 2014 The results of the bone biopsy finally came back. It took Johns Hopkins 7 weeks. Then it took 3 Doctors 3 weeks to interpret them. At this point they say Janes bones are growing too fast. Prolia will not help. Also they do not have a plan that will fix the problem. At least not from our view.
August 2014 There was a mix up with transportation and Jane hurt her knees sliding out of an SUV (too high for her). They are feeling a bit better every day.
October 2014 in late October Jane got a serious infection that caused her to have very low blood pressure and seizures. The seizures made her legs so sore we could barely touch them. This made it impossible for her to transfer in and out of her wheelchair. She spent 3 weeks at Lancaster General then almost 3 weeks at Select Specialty Hospital in York. On Sat. November 29th she was moved to Health South rehabilitation Hospital in York. Her legs feel better, she is starting to transfer, and we hope to have her home soon. Stop, on Monday December 1st she was diagnosed with a severely broken ankle. She apparently had it the whole time and the doctors in 2 Hospitals didn't check it (even though she complained of pain in her foot). She was able too come home again Friday December the 19th.
December 2014 We had a very nice quiet Christmas and New Years, just the 4 of us. First time in three years Jane was home at Christmas.
January 2015 Unfortunately on January 2nd Jane had seizures during her dialysis treatment. Jane has no memory of it. Unbelievably the shaking from the seizures broke her left ankle. She now has a cast on the left and a boot on the right. Because of her lack of mobility she ad to go to Select Specialty Hospital in York, for three weeks. Jane then moved to Health South Rehabilitation Hospital York.
March 2015 Jane was 4 days from coming home when she slipped doing a transfer and hurt her left leg. Being immobile she had to go back to Select Specialty Hospital for 3 more weeks until the pain level went down and she was able to move her legs.
April 2015 April 2nd Jane moved to Lancashire Hall to work on getting wheelchair mobile and being able to do transferís,
May 2015 Once again Jane was about ready to come home when she was stricken with a blood problem. Very low hemoglobin and anemia forced her into another visit to Lancaster General.
June 2015 After a 10 week stay at Lancashire Hall Jane came home in the second week of June.
November 2015 Home at Thanksgiving for the first time in 4 years.
January 2016 Home January 2nd for the first time in 4 years.
The same for my birthday, and Easter.
April 2016 was a little rough. Jane had ongoing problems with her blood thinners. Resulting in some serious bleeding problems. Jane had some pretty alarming blood numbers and spent a week in the IICU at Lancaster General. Things were looking up when 28 hours after leaving the hospital she got the flu. Then she gave it to me. She is now off the blood thinners.
September 2016 As usual Jane can't just have only one thing happen to her, it has to be in multiples. She had to spend the last week in September at Lancaster General. From what the internist told her, there are two distinct types of the Flu going around this year. Within 7 days she had them both! She had a flu shot and we believe they lessened the effect. However it was just too much for her to handle. Once again I'm not sure who was happier when she came home, her or the dogs.
November 2016 Once again Jane caught a stomach virus the second week in November, while doing Dialysis at the Health Campus. She missed one day of Dialysis on a Monday and we had to get her to the hospital on Tuesday. She was so Dehydrated that her potassium went sky high and she ended up in the ICU for 3 days.
May 2017 Jane spent 11 days at Lancaster General (8 in the ICU) with dangerously low blood pressure. They think from an infection, but they couldn't find anything specific.
- October 2017 We started the process of getting Jane
approved for a Kidney transplant and getting her name back
on the list. However the panel that decides your
eligibility decided Jane did not qualify. We new it was a
to call 911 and have Jane taken to the ER at Lancaster
General she was having touble breathing and I noticed her
left leg was swelled up. They had to call the on
call Dialysis Nurse and do Dialysis. She was much
better Monday. After Dialysis Monday she was even
better and we were thinking she might be able to go home
Tuesday or Wednesday. She however got worse on
Tuesday and had to be transfered to IICU.
a eccocardiagram Tuesday morning while I was there.
When compared to the one done two years earlier it showed
signifigant muscle deterioration. Wednesday a cat
scan of her lungs. On Thursday they did a heart
cathaterization the doctor told her everything went
well. The procedure went well. A valve was
leaking (mitrol regurgitation) I don't know the
reason but we did not find out the full results of these
tests until Sunday Morning.
By Saturday (5/5) morning she had improved enough to send her to a regular room. But they did dialysis and she had a problem down there so they had to cut it short. When they took her back to her room she was not any better and they again moved her up to the IICU. Sunday morning they took her to the cath lab and put a ballon pump to help her heart and also a Swan. This meant she had to go to the ICU. They also put her on some pretty strong blood preassure drugs. This is when I started finding out about test results.
Heart Group consulted thier congestive heart failure team
and thier heart structure team. I got a call Tuesday
(5/8) afternoon from a cadiologist on the structure team
who explaind everything to me. The bottom line was
the problems were too bad to fix. We also decided to
take the pump out as it didn't seem to be helping, it was
also extremely uncomfortable. They took the pump out
at 10PM Tuesday night. I got there just after
7 AM on Wednesday and the site where the pump had been
removed started to hematoma. Without going into too
much detail I spent the next two hours watching what
seemed like a live version of MASH. At one point I
counted 14 people in the room. They had to get her
stable and take her down to the operating room and sew up
the surgery they left the breathing tube in to help keep
her stable. So on top of everything else she had to
recover from surgery on a major artery. Apperantly
it was pretty painfull. So we spent Friday (5/11)
through Monday(5/14) getting Jane the best she could
before taking the breathing tube out. We had decided
once it came out, it was not going back in. I got a
call Monday evening that they were ready to take it
out. So I closed and went in. She seemed good
with it out. However by Tuesday afternoon, she was
struggling a bit. But she was awake alert etc., but
they told me her numbers were going down. We all
knew that it wasn't a matter of if, but when. My
goal became how do I get her and the dogs together
asap. So with some of the folks in the ICU's
unofficial blessing, I smuggled the dogs into the ICU Tuesday
night the 15th. We had them in there for 2 hours, I
made sure she had treats to give them. I will not
forget the smile on her face.