TRANSPLANT SURGERY AND HOSPITAL STAY

Sorry it has been so long, but its been quite an adventure that will take several posts for me to catch up, I will also not go into too many gory details of day by day living and side effects of meds/complications etc.. if you are a patient or have a family member going through this... reach out to me and i will gladly discuss with you one on one.

JANUARY 5TH - TRANSPLANT DAY HAD ARRIVED.

This was the day that i was lucky enough to be given thanks to a living donor, there aren't words or even actions that can ever express how much I appreciate, love and respect this person for doing this selfless act without getting anything in return from me.  They are my hero in so many ways that i hope i can live up to their expectations and i promise to take care of their kidney the best way i can.


My Donor did awesome, she went through the surgery without any complications and was able to recover and leave the hospital by Saturday to go home to recover.
There aren't words to say how relieved I was that this went so well for her, this doesn't mean she didn't have soreness, pain, nausea etc... from a major surgery but this was  a step in the right direction.

As for me, things didn't go as easy, but its all righ.
With in an hour or so after i was placed in the recovery room after transplant the standard Ultrasound is done to make sure the bloodflow is good to the new transplanted kidney, unfortunately mine wasn't, so they had to take me back into the ER and cut me back open.

The new Kidney developed blood clots in the arteries - They had to operate on the Kidney remove the clots and place it back in me. Unfortunately, it didnt want to work and they had to take a lot of time to get it to take in a new location to turn pink and healthy and start blood flow.

Due to having more than one surgery, i had some issues with breathing and my lungs filling with fluid, which was rather uncomfortable and i coughed, spit up and had to be place on oxygen then moved into ICU. We also had to place me on a blood thinner in the IV to try to prevent any more clots from forming since we aren't sure why they did originally.

This wasn't the plan, but hey i was alive.


JANUARY 8TH AND BEYOND

After several days in ICU, I was able to more onto the floor so this is a step in the right direction.

Unfortunately, we were given the news that the new  Kidney had been traumatied either by the clots, multiple surgeries and moving it, or just my bodies reaction, but it was what they called asleep.  This is not uncommon for deceased donor kidneys or older donor kidneys or for it to do this immediately after a complicated surgery.

Due to the Kidney bbeing asleep, i had to have a procedure to put a catheter in my right shoulder to be able to do the original HemoDialysis.   Unfortunately due to the blood thinners in me, I bled out profusely from this new catheter and surgical site on my right chest/shoulder area, that we had to do 2 blood transfusions in the middle of the night... this was terrifying to me since my blood was pure.   The reason this matters so much is that when looking for a Kidney match if you've never had a blood transfusion, you have an easier time finding a match and there aren't any antibodies youve created that can cause issues... This was the hardest blow for me to take since i knew this can hurt my chances when i need a new match in 20 years or so to have my 2nd Transplant.

I had also continued to not remember things, argue with my family, get very confused.. these first few days weren't only terrifying but i was questioning everything that was said to me because i was very mixed up, sad and stressed.

JANUARY 10TH - COLLEGE FOOTBALL NATIONAL CHAMPIONSHIP DAY
We were hoping i was about to make the turn, The kidney had been asleep for 5 days, my urinary cath was out and i was walking slowly but able to get up with little assistance and I had had several visitors over the weekend, Kimberly, Stacy, JBridge, and Heather P.  along with my Dad, Step Mom and Sister were all there so it was busy, tiring and Lori was doing a great job keeping all the folks on FB and email updated to help me out... unfortuantely  we were wrong.

I stood up and all i saw was blood, my wound had "dehissed" in essence busted open. I was terrified about dying and why this happened not to mention irritated because i wanted to watch Auburn/Oregon (yes true southern lady!).  This was 10 minutes to kick off... really!

Good news was it wasn't a life threatening opening that would hurt the kidney, sad news, was they couldn't sew it up due to it being exposed to bacteria and they would sew it in me... so i laid on the bed hummed the MASH theme song, hit my morphine pump contiuously, tried to watch the game as they suctioned, pulled, and tried to find the leak - to find out that they would just pack it with gause and once again i had to get more blood transfussions..

This was a tough time in my recovery, i was sad, stressed, moody, starving because I hated the hospital food and i had to do old school dialysis that was painful and scary since i had done it alone at home PD style for the previous 6 months. I admire the folks that came before me and still do Hemo Dialysis to this day, they are storng men and women and i salute you for your strength fighting this battle.


Luckily, One week after this incision burst, they  brough a vaccum to hook up to me to help suction it closed. This is a Miracle worker, it helps save your skin since without it you leaked on your bedding, and gowns and nursed has to change your bandage 5 to 8 times a day- just think of how RAW your skin is with all that wetness and tape on your belly... Ask for the Vaccum! If I had known they had one, i would have on day one... 

NAMING OF THE KIDNEY-

My donor and I decided to name the new Kidney since we thought it might help the hybernation... we are both southern and it had been the worst winter since we'd both lived in the north and the doctors expected it to wake up after 7 days but it hadn't so they said it could be weeks, months etc.. they didnt' know.. so forever more the New Kidney is refered to as "Sleepy".

JANUARY 16th and ON...

Now that i was moving well, was upgraded to a window view, already gone through 2 roomates, I was a regular at the Hospital and now it was Biopsy time to see how Sleepy was really doing....  Word of Advice, If you have an open incision and they want to do a biopsy... dont't let them only apply local anethesia... IT DOES NOT HELP.. I was so upset after it was over I had to be given TONS of Morphine, Vallum etc.. just to keep me from stroking... it was terrible.. They also knew that the minute they touched me from my Screams...

The Biopsy was to tell us if there were any signs of rejection and to see what the Ultra Sounds couldn't tell us, it looked like on the Ultra Sound that some Blood flow was missing to Sleepy, which isn't good for his survival.

Biopsy Results- They weren't what we wanted to hear.. unfortunately it showed Death. I was like Death.. the region that they biopsied was Dead. Unfortunately, they couldn't tell me if the Kidney would ever work, if it was all dead, or best case scenario if only the region they biopsied was damaged.  I was traumatized, the surgeons weren't happy and I could only think of Sleepy's mom doing this amaizng thing for me and by God I was going to will this kidney to work!   They said all we could do was wait and see what the kidney did.

The way you manage to see if Sleepy was waking up is by the Creatnine count, I went on dialysis at a 6.6, below 1 is a normal person's and I hit a high of 14 in the Hospital.

On JANUARY 21st - I was released late that evening to go home - Sleepy was still asleep, my dad was flying home the next day, was still wearing a wound pump on my incision and just barely keeping food down from the anti-rejection drugs, but I was happy to go home after 17 days in the Hospital when usually you are in only 5-7...    Now let the healing begin.....

Prepping for Surgery

Hi Everyone,

Its been a tough 6 months with Dialysis, surgeries, lack of sleep, working full time, and trying to just keep it together, but we've almost made it. I thought I would write out a few of the logistic details that've been keeping me busy.

Surgery will be at  NY Columbia Presbyterian in NYC on Wednesday, January 5th at 8am.

Day of surgery: I will report to The Milstein Family Heart Center, 173 Fort Washington Avenue (entrance is adjacent to Milstein Hospital Building) at 6:00 a.m.

The surgery is 3 hours or so, but it will be more like 6 hours that I will not be with my family - this includes pre and post op.

I will not be in ICU - i will stay in the recovery area until I am placed in a room - these rooms are not private in the Transplant unit, but will be shared with another family.
During Hospital Stay- I will be on the Transplant Unit located in Milstein Hospital, 7 Hudson South (212-305-2332)

Fresh Flowers and Plants are NOT permitted on the transplant unit, please advise all friends and family. If you have any questions, you can call transplant office at 212-305-6469

Post Surgery-
a. I will be swollen – they said don’t be alarmed my cheeks, fingers etc.. will look like they will pop, this is normal.

b. My Catheter bag will be bloody for several days, don’t be alarmed – donors is clear, recipients is full of blood –this is normal

c. I will only get ice chips – not fluid or food for first day or so

I will be in Hospital 5days or so, my gracious donor will be in for about 2 days.


Lori Ferguson will be updating my friends/co-workers etc daily – email is lorielise@gmail.com

       We are doing this to help prevent so many calls to the nurses station - we want the nurses caring for the patients themselves and from so many calls going out to my family to help reduce stress.

Thanks for all of your support and more to come.

Melissa (or Lori after Wednesday for a while).

Its beginnig to look alot like Christmas

Sorry its been so long since i've been in touch... things have been crazy.

1. Gretchen Kelly came up and spent Thanksgiving with me in CT - it was nice to see one of my oldest BFF's and for us to do a few updates to my Condo to prep for my Surgery, we also got all my new appliances in - i wanted that finished before surgery as well

2. Transplant surgery is January 5th at Columbia Prespyterian Hospital in NYC (Bronx 168th and Broadway).   My Dad, Sister and Step mom will be up here for the surgery so its been busy doing logistics for their travel etc..

3. Work has been crazy - trying to train someone as my temp fill in and to get as much organized and done as possible, i am very lucky to be working for WWE, they have been very good to me and i am greatful.

4. Travel to Louisiana for Christmas was as difficult as usual- Airlines dont understand Dialysis or the equiptment and dont want to help you carry/store the machine.. DELTA isn't a better airline with the merger and aren't any friendlier... unless you are crippled and in a wheelchair - you aren't sick or disabled needing assistance.  Makes me sad for other folks who aren't as hard headed and strong as I am to push back and get them to move out of my way.

5. I've been very lucky and feel very loved, i have several friends coming up to stay with me after surgery once my family leaves to help me get around, make my dr. appointments and to take care of me.. sometimes when you feel the worst ( the week after thanksgiving when I had pheumonia) and the lonliest and feel like you are in this alone, people surprise you... I have recieved some great emails, letters, phone calls, Saw some College/Sorority friends, Church Camp friends, and Best Friends more lately than i have in years and I am eternally greatful! It is really helping me get through this.

I also got some great unexpected thoughtful gifts (posted some pics on FB) and really felt the love when i most needed it... Thank you all for all the support.. .

Merry Christmas and Happy New Year.. .Here is to 2011, my new Kidney and My New Life...

Determination and Belief made this happen.. .now 3 weeks to go and I just need to hang on and stay as well as possible to prep for surgery.

taking it day by day

This was one of the best weekends I've had in a long time, I slept 2 nights in a row for 4 1/2 straight, it was a miracle... I  haven't really had much sleep since July when I had this Catheter put in and started Dialysis early August ..so that was a win and I take each little victory that i can get each day.

Just think in 2 months, i will not have this catheter in me causing pain and  maybe i will sleep, i can't wait to catch up on sleep - who would have thought sleep deprivation causes so many problems.

I got alot accomplished, Dad and my step mom Kathy's flights booked, Hotel rooms booked for family and donor, cable vision appointment made. With Dad being up here for 2 1/2 weeks helping take care of me, my closed captioning isn't working on my TV (only 1 1/2 year old) so Sharp said it was CableVision that needs to come out and fix due to the way they hooked it up.  Dad is very hard of hearing and I have supersonic hearing and dont like loud noises when I am sick or trying to rest...so it must be fixed.

I am also hoping to get all the kitchen and bathroom repairs done this week, so that it will all be done by the time I have surgery. So lots going on.

Work is crazy as usual, but they are being very gracious and we are interviewing for a temp to help fill in for me for a few months while I am on leave. Hopefully we will find someone soon.

I am happy to be off of work next week to visit with my friend Gretchen and try to relax and enjoy the holiday and look forward to all the new adventures 2011 will bring once I am well.

Happy Sunday,

M

GREAT NEWS! SURGERY IS SCHEDULED

We've got the greatest news ever, several friends  of mine had their blood work done at Columbia.


Two of them were potential matches, they told us they would look at both options and choose - they spoke to both and now have the surgery on Wednesday, January 5th at 8am.

We check in the Hospital at 6am.

My Dad, Kammie and my step mom will be up here for the week of surgery and then Dad will Stay and fly home on the 21st. Then my first cousin Justin will come up here for the next week then Gretchen will come up the week after that. I am working out the schedule for the weeks to follow after that until I am able to drive since i have to go back n forth to Columbia for check ups for the first few months.

My donor, will need to be off work for up to a month and take it easy for that time so the healing will do well.

I will be in the hospital up to 5 days or so and hopefully my donor will only be in the hospital for 2 days.

I am scared and excited at the same time.

In the process of finalizing hotel reservations, airline reservations, and logistics since i will not be driving and having to get family and caretakers to and from airports to my condo etc... but it will all work out.

I am very thankful and now just focusing on staying healthy, raising money to help cover costs and looking forward to the beginning of the rest of my life - I will be off dialysis and healthy(for me) thank god after this surgery.

M

Catching up

Lots of things have been going on -

Filed a formal complaint with Continental Airlines - They wouldn't allow me to board the plane in New Orleans with the Machine - so I had to sit at the gate on the cell phone and have corporate continental get a disability representative to the gate to force the desk agent - Susan Frasier (i will never forget how rude she was in the New Orleans Airport) to allow me to board the plane- even if I pre-registered this machine.

Other than that things have been pretty calm-

My blood pressure is outta control, but they feel that is due to the weight gain - 13lbs so far from each night dialysis is straigh calories and sugar water going straight into my belly- i get more preggers looking by the day- so i am trying to cut down on some calories but the doctor said it wont help that much since they are filling me with the calories while i sleep.

As for sleep, thanks to the Vallum- I actually am getting 5 hours a night of sleep. The sleep deprivation is getting a little better so that is taking the edge off, but the pain is still there all night long until this Catheter comes out.

I am just taking it day by day.

Traveling with the Machine and Life as we know it.

Sorry its been so long..

Things are crazy---  my office reorganized recently so my work load doubled as well as my direct line working with more employees. they are all very nice, its just inconvenient timing and a lot of stress trying to maintain my normal work load and learn an entirely new segment without time for a learning curve..so good times.

Anyway - I recently took a Road trip to Oklahoma City and to Dallas.  Unfortunately I had connections each way and it wasn't fun!

Security was very nice at the airports- They've seen the machine, you just need to be aware you will be pulled to the side for them to open it and make sure you aren't stashing anything else into it.

The issue comes in when you talk to the gate agents and flight attendants... seriously they need attitude adjustments... do they really think someone wants to be treated sick and like they are a mutant just to be able to board the plane early.  Plus, they only offered help to folks in wheelchairs...what happened to Delta airlines? What made flight attendants, tell someone with a pre-registered machine and a doctor's note tell me that unless its oxygen they were throwing it under the plane? Which of course i said, over my dead body, litterally since if you break that machine throwing it under the plane you can put my health in grave danger.
After several days and many connections of the same argument i made it to and from my road trip.

Delta isn't my first choice of a airline anymore- I will see on Sunday if Continental's flight attendants are in any better moods. We can always hope.

I am just taking things day by day trying to deal with work changes, dialysis, travel and just life as we know it...