Saturday, March 19, 2011


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.


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.


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.

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... 


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.....

Sunday, January 2, 2011

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

       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).