HIS PERSPECTIVE PART TWO

 Welcome back to part two of Donna’s Transplant Adventures (TP).

Donna gets that much waited for TP.  After about a five hour surgery, I was told her surgery went well, with no problems. I was able to visit with her in the ICU.  She was in the ICU for one day. They assigned her a room on the Transplant Floor of the hospital. The third day after TP I noticed changes starting to happen. She became quiet and her personality was subdued. At first I thought this must just be a typical reaction in recovering from a TP. After two more days of decline I was very concerned. I started asking the nursing staff if they could explain what was happening with her and would they inquire about my concerns with the liver doctors. They blew off my concerns and treated me as a pesky family member who was overly concerned about his wife. I continued asking every nurse that was assigned to her care, every shift change, everyone for help and NOTHING.  Surely they must have seen the changes. By the 5th day after her TP her condition had badly deteriorated. She had something serious going on but without the help of the hospital I started to research her symptoms. 

Her symptoms presented with unusual smells, tastes, nausea, deja vu, aimless movement, lack of interest and concentration.  She kept saying she wanted to “crawl out of her skin”.  She thought everyone was her enemy and they were plotting against her. Towards the end she did not even know who I was. A blank stare was all I got. And still no one intervened to help her avoid the damage that was occurring. Her eyes had turned orange. On day six, a nurse came in to administer her afternoon meds. Not long after the nurse left, I heard my sister-in-law scream DONNA!  She had just suffered a bad seizure and was unconscious. Her face was red and her lips were blue. The nurse heard the scream and ran back in to call a code. The rapid response team quickly arrived. About 30 people started to assess her, then treating her with a drug. They prepared to move her to the ICU. 

At this point I had no idea whether this was a stroke, seizure or what. Would she survive?  I was fit to be tied. Many tests were done, including a brain wave test, and a MRI. Due to an overdose of immunotherapy drugs given over the course of six days, Donna was diagnosed with a condition known as PRES. (Posterior Reversible Encephalopathy Syndrome). It is damage to the brain due to toxic drug overdose. It is characterized by seizures, altered mental status, visual loss and edema in the parietal lobes of the brain.  (Water in the brain). The consequences of this seizure were convulsion spasms, altered consciousness, clonic jerking and shaking, and extreme sleepiness. This bothered me deeply. I was amazed how she could sleep through the violent twitching and jerking. Every now and then I would try and wake her to see if she was ok. I was worried she had permanent brain damage. I also was worried the seizures would return. 

She suffered from this for two days and nights. She slowly improved but was unable to walk for a couple more days. Then only by using a walker. She needed help to get to the bathroom. The long term effects of the PRES and seizure have at times diminished her ability to speak and her memory has been affected. She also has some occasional anger issues. Even today, two years later, she can not walk without her walker. She has some hip issues but neurological damage as well. She most likely will never be able to drive again. I sometimes wonder how bad this event could have been if she had that seizure in the middle of the night when nobody was there to call for help. What could the damage from this have done to her future, or maybe she does not survive. Scary to even imagine. Was there a report filed concerning her seizure and an ICU report of why all this happened.....NOPE!!  There never was.....color me surprised. 

Donna was scheduled to see an epilepsy doctor. She was prescribed the drug Keppra for one year. The side effects of this medication can be irritability, depression, tiredness, suicidal tendencies, memory loss and other conditions. She was supposed to remain on Keppra for six months but alas, she was on it for one year, hmmmm, I wonder why?

  So why, you may ask, was she over prescribed so much immunotherapy after TP?  This is a question the hospital never wanted to talk about. They went out of their way to avoid talking about it. I have given this question much thought and can really only come to a couple of conclusions. Perhaps the extreme dosage was a mistake by the doctor in charge of ordering it. Or was it given to her in large quantities for a specific reason, but what?  

Looking back at her med charts from the hospital flow charts (records of the drugs and dosages and time given to the patients that nurses record in the computer system), I was able to determine that Donna was taking four different immuno drugs all at the same time in high dosage amounts. These drugs are the common drugs used for TP rejection protocol, they are SIMULECT (basiliximab) supposed to be an induction immuno drug. However looking at her med charts she received this drug in large amounts starting from the day of her TP until two days after her seizure. (A total of eight days). Another drug known as Tacrolimus, (PROGRAF), was started two days prior to her seizure. This medication has a history of serious side effects. Including PRES, seizures and cancer. Why would they continue with both Simulect and Tacrolimus together?  Another common drug used in immunotherapy is Mycophenolate (CELLCEPT).  This is a backup med she was receiving 1000 mg’s twice a day. Finally Prednisone (SOLUMEDROL) in large dosages. 

It took Donna six days from her transplant to develop PRES and seizure. I believe the reason for the toxic overdose to these meds was due to the unstable condition of the donors liver. So the doctors used large continuous doses to thwart off the possibility of acute rejection, or was there a blood or tissue type matching problem. Could the overdose have been related to the fact that her donated liver had a large tumor and tested positive for EBV and CMV. Was the liver cancerous?  The doctors said they “gave her too much immuno suppression drugs”. But they never said why. We can’t see the labs or medical records for the donor so we don’t know if the liver was cancerous before TP.  Even today this is a topic they don’t want to discuss (yeah I guess I wouldn’t want to either). Whenever I ask about the donors health conditions the hospital says HIPAA regulations don’t allow them to disclose this information. It would probably take a court order or involvement from the FDA to obtain information. Donors or donors families need to allow specific info regarding the organs they donate and any health issues that would affect the life of the recipients. 

On one hand organ donation is a great achievement of science, but if not done correctly it can cause people to die. It could also cause sickness and permanent disability. Due to the overdose of these immuno suppression drugs she is excluded from taking these commonly used drugs and instead must take the more dangerous and extremely expensive drugs. As it turns out there are not that many good immuno drugs for TP patients to use. 

Expensive liver disease drugs Rifaximan, 3 month supply out of pocket equals $1950.00. Everolimus one month supply $444.00 out of pocket. You get the picture? 

LOOKS LIKE SHE MIGHT SURVIVE 

Donna continued to make slow progress but was not interested in food. She was very weak and not able to walk without help. She needed help to get to the bathroom. One night she needed such help to the bathroom and the order was that two (2) aides help her. Well guess what? The hospital is always short of aides. After she called for help, one small gal tries to help her. Then POW! She falls and lands on her previous hip replacement. I had an agreement with her nurse to leave a porta potty by her bed to avoid this very thing. Of course that agreement was broken....no porta potty....no two aides....she falls and seriously hurts her hip....more X-rays....wound care....pain patches....anti inflammation meds....ice packs....more pain for her. Pain that seemingly was never going to end. Even today she still has a mass of tissue in her hip area due to this injury. 

It was clear that I needed to sleep at the hospital in her room to keep her safe while she recovered. That hospital couch was harsh night after night. 

Physical Therapy wanted her up and walking even tho she was still recovering from her SURGERY, PRES, SEIZURE, CONVULSIONS, HIP INJURY and the fact that she was as weak as a kitten. She could not swallow food or her meds with that feeding tube down her throat. Her weakness and lack of of balance posed another fall risk, but the surgery team would come in every day and didn’t seem to understand why she wasn’t up and walking around. (Sometimes you can’t see the forest for the trees). One of the surgeons got extremely mad at her telling her off about her “promise to participate in walking and all other activities asked of her”.  The look on Donna’s face broke my heart. 

After twenty days of this hell she got to go home. But it was short lived. She developed “C-DIFF”, a bacterial infection of the colon so back to the hospital for two more days. 

Donna continued to improve through February and March, but in April her blood tests revealed her liver enzymes were very high so it was time for a biopsy and God help us. Now everything I had learned about EBV, tumors, and drug toxicity had finally come true.  She has large B Cell Lymphoma cancer. Surprise, surprise, surprise. Never saw this coming!!

Stay tuned for part three of Donna’s Transplant Adventures while once again she needs to dodge the bullet.