A Crazy Rollercoaster Ride - Very long!

[KatieV]

I am SO frustrated and ready to be done with this rollercoaster ride I've been on for the past few months!  I was hoping for a non-eventful 2014, but it started out with a Code Blue!  I tried to keep my message short, but it is pretty long – sorry!

The rollercoaster ride started in October.  I was scheduled for a fistula revision on October 15.  I've posted before about my physical and psychological issues regarding my fistula.  Needless to say, I was NOT looking forward to the surgery and then having to use the fistula again (I'd been using a chest catheter for 6 months).  On the 11th, I received a call from the Texas Transplant Institute that they had a donor for me as part of a transplant chain!  They wanted me down in San Antonio along with my mom, who was planning to donate in the chain, the next week for final testing.  We both were cleared medically for the chain that was scheduled for November 21st.  Unfortunately though, further antibody testing showed that I was not as compatible with my potential donor as an earlier sample had shown.  We had a conference call with the surgeon on November 5th and it was decided to remove me from the chain.  He thought I had a 30% chance of immediate rejection, which was just too high.

That was incredibly discouraging.  With my PRA of 100%, I thought it could be years before I received a transplant.  At this point, I was having migraines after each dialysis session (Nocturnal NxStage) and was pretty miserable.  I was having to make the choice some nights about skipping dialysis or skipping work the next day.  Nine days later, on November 14th, however, I got a call from my local hospital about a deceased kidney.  I was first in line in the COUNTRY for it!  There were a bunch of logistical issues getting it shipped from the West Coast to Vermont and it got delayed several times.  On November 16th at 1 pm, I got wheeled into surgery and received my zero-mismatch kidney!  It had been without bloodflow for 33 hours, but started working right away.  It quickly got down to a happy creatinine of 0.8!  After some drug-related high Potassium issues, I was discharged a week later and started recovering at home.  I was so happy when my NxStage machine and 30 boxes of supplies were picked up!  Everything was going well until I started having joint pain.  I was on Tacrolimus, Everolimus, and Prednisone and the doctor thought it was probably caused by the Everolimus.  I was taken off it as a trial and, after a week and a half, was feeling much better.  I had 2 days of feeling great and began to plan organizing, baking, and craft projects. 

Then I woke up one morning with stabbing pain in my old transplant.  When it has happened before, it's always been a UTI.  But several urine cultures came back negative and the antibiotics didn't help.  An ultrasound was done and I had fluid in my old transplant.  A second was scheduled for 2 weeks out.  I became very fatigued; I drove myself in for labs (half an hour drive) and on the way home had to stop to take a 30 minute nap.  I then napped again in the driveway before coming in the house and sleeping for 4.5 hours.  After speaking with the transplant coordinator, I ended up calling my mother in tears as I didn't feel they were listening to me.  So she got involved... after she spoke to the coordinator, they decided to do another ultrasound the next day.  That night my new transplant started hurting.

So, Friday, December 20th, I drove myself into the hospital for labs and another ultrasound.  I now had fluid in my new transplant and my creatinine was up to 1.99!  They decided to admit me and do further tests.  I had a nuclear something test, which showed the new transplant was clearing well (and the little residual function I had in my old one was gone) and then was whisked away for dual biopsies.  I was very glad they knocked me out for that!  I then spent the night in the hospital.  The next morning, my creatinine was down to 1.4 after skipping Tacrolimus the prior night.  My trough level had been 18, so they thought that was the cause of the high creatinine.  We were waiting for the biopsy results and things were looking up, so they gave into my begging and discharged me about 1 pm with the promise of returning for labwork the next morning.  My sister was getting married at 3 pm and I really wanted to attend!  We were walking out the door when we received a call that my preliminary biopsy results had just come in and that my new transplant was rejecting.  They told me to continue to the wedding, but to return by 7 pm that night to start treatment.  The wedding was beautiful; even though they only had 18 days to plan it!  My new brother-in-law's deployment was moved up to January and they decided to marry before he deployed to Afghanistan.  We made it to the ceremony on time and even got to eat dinner at the reception before heading back to the hospital.  We were later than our "curfew" of 7 pm as the state was having a nasty ice storm, but we made it in using 4-wheel drive.

They started me on 500mg Methylprednisolone when I got there.  The next day, they planned to give me Anti-thymocyte globulin (ATG).  That nearly killed my brother during his first transplant and his brand new transplant never worked because he was allergic to rabbits (it is developed from rabbit protein).  I must have mentioned it to six or so doctors between Saturday night and Sunday morning, yet it was not passed onto the transplant surgeon.  My mother got involved again and called a friend that used to be a sales rep for ATG.  He advised with the family history and the fact I have had lots of rabbit exposure (I live with a Flemish Giant rabbit) that I refuse treatment.  My mom ended up talking to the surgeon on the phone while he was in my room and convinced him not to use ATG.  Instead, they used Rituximab.  They also added Imuran to my daily medications.   

Monday the 23rd, I had my first Plasmapheresis treatment (with plasma exchange not returning my own plasma) followed by IVIG.  As the first needle was pulled (yes, they used my fistula; my chest catheter was removed 4 days before being diagnosed with rejection...), I broke out in hives all over.  I ended up being given a total of 100mg of Benadyrl to control the hives which, surprisingly, didn't knock me out!  Christmas Eve, my creatinine had gotten back down to 0.8, which was my baseline.  Things were looking up, so they discharged me with plans for five more Plasmapheresis/IVIG treatments.  I was very glad to be home for Christmas!

Thursday early morning, I woke up to use the toilet, climbed out of bed, and collapsed on the floor!  My joints were so painful and my legs would not support me because of the pain.  My husband ended up half-carrying me to the bathroom and back.  It was still bad, but I could walk with pain later that morning.  I was due for labs, so on the way in I called the transplant coordinator who sent us to the Emergency Department.  Apparently, we need to work on communicating better with each other - I just needed to see the transplant surgeon.  They don't know what is causing the joint pain – medications, steroids, or what – but it is much worse than the joint pain from a few weeks before.  I located my cane from my joint issues 3 years ago and use that to get around.  A set of x-rays don't show anything obvious.  I have an appointment on the 9th with a Rheumatologist.

Friday and Monday, I had uneventful Plasmapheresis/IVIG treatments after being premedicated with Benadryl.  My creatinine continues to range between 0.72 and 0.85, which everyone is thrilled about.  My joint pain varies in severity and which joint is most painful at the moment.  Which brings us to yesterday, the 3rd... 

As during the prior two treatments, I was given 25mg of IV Benadryl before the plasma was started.  We were on our last bag of plasma with less than half an hour to go when I started getting itchy.  The nurse gave me an additional 25mg of IV Benadryl, but I quickly began having difficulty breathing.  I remember hearing a Code Blue called.  It only took about five minutes for the Critical Access Treatment Support (CATS) team to arrive, but in that time, I became unable to see or hear clearly.  I don't think I completely blacked-out, but I came very close.  My blood pressure dropped to 60/40.  An EPI-pen was shoved in my thigh, 125mg of Methylprednisolone was pushed through the fistula, and an oxygen mask was put on me. 

It was a very freaky, scarey experience.  My poor husband witnessed the whole thing!  He became aware how bad it was when he realized there was about 20 people shoved in the  tiny dialysis isolation room!  We are both grateful that my former home hemo nephrologist happened to be on the floor as he informed them of pieces of my history that were important.  After I was stabilized, they brought me down to the ICU for monitoring.  Because of my limited IV access (pretty much only my right hand) and my still-low blood pressure, they were unable after 4 tries to insert an IV.  One of the dialysis nurses had come down to ICU with me as the needles were still in my fistula (she was a fierce guard of the fistula).  After some discussion, it was determined that I was stable enough to take anything needed via mouth, so she pulled the needles.  It was weird to be in the ICU with only an oxygen monitor, blood pressure cuff, and a cardiac monitor.  They decided to keep me for monitoring overnight, but let me go home this morning.

The transplant team will be discussing my remaining two Plasmapheresis treatments (scheduled for next Friday and the following Friday) and will decide whether to continue with them as is, alter the treatments (use Albumin only) or cancel them entirely.  The half empty bag of Plasma is being studied in Pathology in the hopes they can find what caused the trouble.  They will also be discussing my immunosuppression.  I am currently on 7mg twice a day of Prograf, 100mg of Imuran, and 20mg of Prednisone.  There is some talk of putting me back on Everolimus on a lower dose to have the four different agents onboard.  I am a troublesome case as my transplant was a zero-mismatch (the donor had four and I have five of the six main antigens) and I started rejecting a month past transplant with good immunosuppression (induction drug was Campath).

So it has been a crazy rollercoaster the last three months, which has been really hard.  I have a functioning kidney right now and am off dialysis, yet I'm dealing with these weird health issues/side effects.  I have had thoughts of “why did I get a transplant?”, which make me feel extremely guilty.  Someone DIED for me to get this kidney.  I'm really emotional – I cry over the silliest commercials.  I pushed myself harder than I probably should have as a newly transplanted person and went to multiple family holiday gatherings (none very big) because I knew if I sat at home I'd end up breaking down in a crying mess all over my very patient husband. 

[MooseMom]

What a story!  Oh my, I really hope your tx team find just the right drugs and dosages to stabilize you and your new kidney.  Please do keep us posted on your progress.  I can't imagine how difficult these past months have been for you.   

KatieV, no one died so that you could have that kidney.  I feel very strongly about this.  There is nothing, NOTHING, noble about feeling guilty.  Please do not make your life harder by imposing this particular emotional burden upon your shoulders!  It does not improve the quality of your life.  It is an utterly useless emotion.  You gain nothing from the guilt.  It is grossly misplaced.

Good luck in the months ahead!   

[Jean]

WOW, you poor girl. You are a tough little one tho and what a story you have to share. Its hard to not be depressed, so stop beating yourself up over it. Stay well and let us know how it goes with you.
God Bless

[amanda100wilson]

It,certainly has been a roller-coaster ride for you.  Hopefully things will improve soon.  Don't feel guilty though, I think that any normal person would,feel the same way.

[cassandra]

What a horrible time, I'm so sorry to hear this. When your kidney keeps it up, you, and the rest of your body will too, don't give up just yet.

Wishing you all the best, and all the love in the world, Cas

[willowtreewren]

Okay, girl! You are going to beat this. A very important thing is to remember that stress and negative thoughts are not good you your overall health!

Get on-line and find some comedy stuff to watch. Or beautiful things. That really helped me when I was battling the worst of my Lyme disease (that made me unable to walk or talk).

 

I'm pulling for you.

Aleta

[jeannea]

Wow! That's quite a story. It's hard to stay strong with all that happening. Please realize that it is very real to feel depression and anxiety. On the other hand some of your drugs could be messing with your emotions. It takes me almost 2 weeks to pull myself together after getting methylprednisolone doses.

It is possible that you're having an allergic reaction to rituximab. My niece had a very bad one. I'm not educated on what would cause the problem during plasmapharesis but you don't want to do a code blue again. Why are you not taking CellCept? Do you have a problem with that too?

You don't need to feel any guilt. Transplant is not always an easy road. You're having a tougher time than most. This sounds serious but it also sounds like you have good doctors. They want you to be well. They'll keep working for that. Please have some mercy on yourself. Get some rest. Do something comforting. Let us know how it goes.

[KatieV]

Medications are hard for me... during my first transplant, Rapamune caused cysts in my bones, Cylcosporine caused breast tumors, and Cellcept/Myfortic caused me to drop 30 pounds in one month!  We did a trial run of medication after I was on dialysis and I was fine with Prograf and fine with Everolimus, but they cancelled the trial before putting them together because I got mono.   

They don't think it's a Rituximab reaction as it was almost 2 weeks after my dose.  They think I either had a reaction to antibodies in the plasma or that the antibodies in the plasma had a reaction to me.  I may learn more during clinic today, but I doubt the pathology report on the remaining half bag of plasma is back yet. 

We will see about the doctor... I meet the new transplant surgeon today.  Both transplant surgeons left my hospital last year.  In order to keep the transplant program running, for several months, there was a rotating surgeon from Mass General covering.  There were 7 of them and they'd spend a week up at Fletcher Allen before switching out.  All of them were very good and knowledgeable.  Fletcher Allen has hired a transplant surgeon and yesterday was his first day.  I'll meet him tomorrow in clinic.     

[KatieV]

Well, I've met the new transplant surgeon on Wednesday.  He seems nice, hopefully he is experienced.  We went over my long sordid history and discussed current treatment plans.  The transplant team was waiting for the Blood Bank lab to come back with the results of the remaining plasma, so Plasmaphersis was put on hold.  He thought another dose of Rituximab might be good, so planned to admit me on Thursday for it so they could observe me overnight closely in case of a reaction to that.  My mother was with me and asked him to consult with the doctor we worked with in Texas (he is very experienced and they did advanced crossmatching during the chain workup).  I left feeling optimistic about working with Dr. M.

Thursday, I had my Rheumatology appointment.  She was pretty sure my joint pain is caused by the high levels of steroids I have received.  She was going to try to squeeze me in for a MRI. 
I then called Transplant and they set about getting me admitted.  I was waiting for them to find me a bed when I got a call that the treatment was cancelled and that Dr. M. wanted to meet with me (and my mom).  He had called the Texas doctor (Dr. B.) and left a message Wednesday night!  Dr. B. called him back Thursday morning and they spent 2 hours talking about me.  They were mostly on the same page, though Dr. B. didn't think I need more Rituximab as my labs had improved so much (creatinine is holding steady right around 0.76).  The plasma results came back and nothing was found that I interacted with, which makes further plasmaphersis even risky.  Right now, Transplant is going to watch me very closely.  I'll be getting labs several times a week, but I won't be having further infusions at this point.  Dr. M. wrote a note to have me on disability for another month because of all the doctors' visits (and because I'm so immunosuppressed).

MRI managed to squeeze me in at 9 pm Thursday.  The Rheumatologist called me about 6:30 tonight with the news that I am in the early stages of Avascular Necrosis caused by the steroids.  My mother was, unfortunately, right as usual.     It is early, so hopefully it can be reversed or stopped in its tracks.  Treatment consists of reducing steroids (which has already happened - down to 20mg) and no weight-bearing (crutches).  What fun!  The rollercoaster continues...   

[jeannea]

Very interesting update. It sounds like you have some very good doctors. I'm not familiar with the necrosis but it sounds like they can help you. I hope you feel better soon. Keep switching blood draw sites as often as possible so you don't get too much vein scarring.

[KatieV]

Keep switching blood draw sites as often as possible so you don't get too much vein scarring.

Ha!  I literally only can get blood draws in my right hand!  The left is off-limits because of the fistula and nothing is accessible above my right wrist!

[jeannea]

I'm also down to only 2 places. The phlebotomists fear me. I've heard you can use your foot but it hurts like h*ll.