A FLASHBACK TO MY KIDNEY JOURNEY

MY KIDNEY JOURNEY

This article (post) is a re-cap of my/our kidney transplant/donation journey - I, Lissette Rozenblat, the living kidney donor, and my husband, the transplant recipient. My husband, Sergio suffered from kidney failure for over 20 years and was getting progressively worse throughout the years. He was pretty adamant about not going on dialysis, so we were doing everything possible to get him a transplant before he actually had no other choice, because his creatinine levels kept going up. 

In 2008, after much research on the internet, I came across an innovative way of donating an organ, a kidney swap! I had always kidded with him that he "needed a Cuban kidney," but unfortunately, I was not a direct match.  He had a few other possible donors but for various reasons, it did not work out.  I like to think it was destiny - that it was written that it would work out the way it did.

I contacted the Alliance for Paired Donation organization and continued my research, which finally lead us to Columbia Presbyterian Hospital in New York.

I always knew I would be the donor, in some way, I just never imagined it would be a kidney swap.  My decision was met with much skepticism by my family, as my children were very young at the time. I kept hearing, "What if someday your children need a kidney?"  All I can say is that instinctively, I knew I had to do this. God-willing my children would never be faced with health issues and besides, I thought, they have three older siblings who could also help if God-forbid that happened.  I also felt I needed to do this because, I could never help my mom, who died of cancer, so how could I not save my husband's life, when I had the opportunity. I owed it to our children.

As the surgery date grew closer, I began to worry a little.  Not so much about me, but for my children, both their parents would be undergoing surgery simultaneously.  The hardest part for me was leaving my little ones behind as we had to travel out of state for the surgery.  Our youngest children were 2 and 6 years old at the time.  We would not be with our children for Thanksgiving. And honestly, at this point, all I wanted was for both of us to make it out of surgery safe and sound.  I had planned a "sleep-away" for my 6-year-old at different homes including my dad's, and my best friend's house but she knew, she knew this wasn't all fun and games.  Years later, she would share with me just how scared she really was.

Going into surgery, we did not know who the other couple was that we would be "swapping" with.  My husband jokingly called it, "the ultimate wife swap." He loves to kid around, and honestly the humor helped ease the stress and tension I was feeling.

Fast-forward to the journey.

THE FLIGHT

November 18, 2008 at 6:15pm

The actual flight to New York City was uneventful, thank God. The only thing though, was that for the first time ever, I was actually worried. Not about me but for my husband. Right before we were about to board, he got really weak and pale and looked like he was about to pass out. I'm sure there was a lot of anxiety too, but he is definitely feeling the symptoms of end stage renal failure. I am very glad we are here already and it's almost time. I tried to help him out and hold his hand and tell him to breathe as we were boarding but it really wasn't helping. For a few minutes I actually thought we might not get on the plane, which freaked me out.

Luckily, after a little while and a turkey sub and Sprite, he was starting to feel better. It was hard to be focused on him when I too was feeling so anxious. It's kind of a weird scenario because we are supposed to be supportive of each other but we each have our own anxiety and worries. It's hard for me to vent and share my feelings with him because I don't want him to feel guilty at all in anyway.

FEELINGS

November 19, 2008 

Scared and missing my kids sooo much but ready. Scheduled to be in the hospital by 6:00a.m. Operation should hopefully start by about 8:30a.m. ending around 2:00p.m. or so. All will be well.

Operation Day

November 20, 2008

We arrived at 6:00a.m. to Columbia Presbyterian Hospital.  I remember sitting in the waiting room staring at all the other people in there waiting and wondering, if one of those people was the one, I would be donating to.  It was so weird, not knowing and just blindly going in, knowing that I would be giving up my organ, basically to a stranger.  Ultimately, I knew, it was for my husband, but the waiting was stressful.

I took various pictures before surgery.  I even sneaked my camera in the pre-op room!  If I could have had my camera the whole time, I totally would have!

 

Lissette Rozenblat before surgery (kidney donation)

The rest is rather vague to me, I just remember waking up in my hospital bed and seeing my husband standing and walking in front of me.  Yes, he was up and about!  (The donor's recovery is always that much tougher.) I also remember feeling like a whale, as I had been bumped with so much air for laparoscopic surgery.

Lissette Rozenblat and kidney surgeon, Dr. Sandoval.

    

That's me pumped like a whale with my husband, Sergio the 

day AFTER surgery. (Nov. 2008)

Finally, the day after surgery, they allowed us to meet the "other couple."  They were a very nice couple that lived in New York and were in the same situation as us.  Basically, the wife donated her kidney to my husband, and I donated my kidney to her husband.  "The ultimate swap!"

Kidney Paired Exchange 2008

Sergio with his surgeon and the other recipient, who I,
 (Lissette) donated to.

Sergio & Lissette post-op kidney transplant/donation.

Sergio with family friends post-op

Sergio & Lissette Rozenblat post kidney transplant/donation
November 2008.

 It was an incredible journey and I only wish that more people would learn about organ donation and the ability to donate your organ and live a normal life, even if you are not an exact match! 

Kudos to all my fellow living kidney donors!

TECHNICAL STUFF - KIDNEY DONATION

Now that I am getting closer to the actual day of the operation (5 more days!) I figured I'd share a little technical information with you, so you know what's going on or better said, what's going to happen. "surgical approach to living kidney donation is called laparoscopic donor nephrectomy and involves the use of small cameras and instruments inserted through the abdominal wall. During this procedure, the kidney is separated from its surrounding structures. The operation is performed using TV imaging. Once entirely separated from its surrounding structures, the kidney is removed through a small incision usually in the mid portion of the lower abdomen. The operation can take from one and one-half to four hours or more depending on the complexity of the surgery. After a kidney donation, as with most major operations, the patient is monitored in a post anesthesia care unit or recovery room. Blood pressure, heart rate and temperature are observed as are oxygen levels and wakefulness. The level of pain is also monitored. Most donors will come from the operating room with a Foley catheter draining the urinary bladder and with at least one intravenous line allowing fluid administration in the early post operative period. Patients are not permitted to eat or drink anything until they are fully awake, and until they have no nausea and vomiting. After the immediate recovery period, the donor is transferred to either an intensive care/monitored bed, or to a medical-surgical ward. In either case, post operative pain control is ordered and may take the form of patient-controlled analgesia (PCA), or epidural pain management. Usually, the PCA technique, which the patient can control by pressing a button, is used for the laparoscopic donor surgery and epidural pain management is considered for the patients having an open donor nephrectomy. All patients are encouraged to begin walking within 12 to 24 hours following surgery, and self-care including routine hygiene such as showering, shaving and brushing teeth can begin very soon. As a rule, the intravenous fluids are discontinued when the patient can drink or eat food by mouth. The Foley catheter is discontinued when the patient is walking and beginning self-care. Some treatment plans related to prevention of post operative complications are part of the post donation protocols, just as they are part of patient care for any major surgical procedure. Compression stockings or elastic hose are applied to the feet and legs to prevent blood clots from forming, and small injections of heparin or a similar drug may be given at eight- or 12-hour intervals to also address prevention of abnormal blood clots. This is important because one of the major complications that can occur following kidney donation is a blood clot traveling to the lung (pulmonary embolus). This infrequent, but well known, complication can be life threatening and measures to prevent blood clots traveling through the body are standard in all hospitals. As activity and walking increase, these preventive measures are stopped. As the first day or two passes, most kidney donors begin to return rather quickly to the usual activities of daily living. 

Food and fluid intake resume, less pain medication is needed, and patients begin to anticipate discharge from the hospital to their home. Usually, the only discharge medication required is a standard pain medicine taken by mouth; it may contain some amount of narcotic. Pain control, therefore, may be accompanied by advice not to operate a vehicle, power tool or other machine. 

Further, most surgeons recommend patients do not drive until they are entirely comfortable with operating a vehicle. Patients are also instructed not to lift any object heavier than approximately 10 pounds for a three-to-six-week period following donation. This activity restriction is to prevent the occurrence of hernia in the incision. 

Usually, discharge planning is completed, and the patient is ready to go home on the second, third or the fourth post operative day. "

Whew!!! I am ready!

MY MEDICAL TRIP TO N.Y. - PRE-OP KIDNEY DONATION

So where do I begin? What angle should I approach? The everything went well approach, (my tests went smoothly) or the I puked my brains out, couldn't get on an airplane home, I was scared shit less angle? Hmmm, why don't I just give you the straight facts on how my trip went step by step? Well, I said my good-byes at home and got to NYC on Sunday night, Nov. 2nd. Smooth flight. You got to love Jet Blue with those awesome TVs and comfy seats. 

I arrived too late to go anywhere or do anything other than to go to sleep and get ready for an early morning. I stayed at Sergio's cousins house (with Dave & Angie who are just wonderful!) The next day, I woke up early and got ready for my appointment. Angie, Dave's wife thought ahead and ordered some hero sandwiches (a.k.a. "subs") for the long day that awaited me. What deli is open at 7:15a.m. I wondered? But hey, she found it and sent Dave off early to pick them (heroes) up and made sure he arrived with plenty of yummy food for me later that day after my fasting was over. I was told I needed to fast for 12 hours prior to my testing - the blood test and the CT scan that I had to do. Mind you, I cannot survive without a cup of coffee in the morning but I followed the rules and had NOTHING! OF course, before leaving the house I had to take some pictures. I was nervous but I HAD to take pictures! 

  ME & ANGIE GETTING READY TO GO: DAVE & I:

WHERE I STAYED: ALONG THE WAY: I arrived with Dave, Sergio's cousin at Columbia Presbyterian Hospital at 8:50a.m. Right on time for my 9a.m. appointment. I re-iterated to Dave that he should not stay with me because it was going to be a LONG day but he insisted! 

 There were so many buildings at Columbia but the one thing that caught my eye was this one:

And so began my medical day. 9:15a.m. - I got called in to take my blood. Have I mentioned that I'm petrified of needles? How I'm going to get through all this I don't know, especially without me being able to complain who I usually complain to - Sergio! I'm a real baby when it comes to these things. The girl who was to take my blood was in such a rush I had to actually say, "Whoa! slow down you are going to hurt me!" By the time I cringed and looked away, she had drawn 8 viles of blood! "Quick Draw McGraw," I called her, or probably Garcia! This was me trying to put on a brave face before getting the needle in my arm. I know what a wimp! I couldn't fake it very well! THE VILES THAT INTIMIDATED ME!! After the blood, I had my vitals checked, weight, height and urine test done, all rather efficiently I must say. 10a.m. - By ten a.m. I was being interviewed by Wienerschnitzel! 

Here I was all nervous about an interview with what I thought would be a psychologist, thinking I would have an emotional meltdown as I talked about my children with someone who could relate to what I was going through emotionally and INSTEAD, I got a psychiatrist right out of a Mel Brooks movie!!! Honest! Weird as can be! My name was called and I followed this tall lady with absolutely no introductions, into this little room and we sat down. She had short curly hair, with bottle cap glasses and was missing a bottom tooth and her last name was Weiner something. She had an accent like Klinger from Hogan's Heroes, really! I was so amused when the interview began (more like inquisition) that I was extremely tempted to snap her picture. I had my camera laying right there on the table as she took notes, I did too. Probably made her nervous. 

It was quite the experience, but I passed with flying colors. 

12 Noon - Okay, so now it's noon and I'm officially starving. I was scheduled to have my CT scan at 12 noon. We walk over to the CT Scan department in radiology, which for some strange reason was in the Babies Hospital. The pediatric unit. Great right? Just what I need, to see small children suffering as I'm missing my own. Actually, it made me realize how extremely fortunate I am. So, I sit down with Dave and we start waiting and waiting and waiting. 

By 1:45p.m. I'm a monster and ready to bite someone's head off. I don't do well when I'm hungry. I had a 2:45p.m. meeting scheduled with a doctor, so I'm stressing that I will miss that. I still also had to get a chest xray and cardiogram done and a 3:45pm with a social worker. 

THE AREA I WAITED IN IN THE PEDIATRIC UNIT:

2:50p.m. - I get up and go complain. "Why haven't I been given that nasty chalk liquid to drink yet?" After all, I have to wait one hour after drinking it. I'm going to be late for sure. I know it. Five minutes, later, this technician guy comes out like he's serving margaritas or something with six bottles with straws. Two for each of us waiting - yeah, you do the math silly. It was me, an older lady and another 40-ish lady all anxious to get this over with. He explains. You have to drink each bottle in half an hour, after one hour, then you will have your scan and be injected with more dye for contrast via an I.V. Okay, so here starts my real anxiety. Instead of calmly drinking my chalk-like drinks. I'm hungry, I'm thirsty and anxious so I pretty much inhaled those nasty drinks in a heartbeat on an empty stomach as I dashed for another building to try to do my chest xray and cardiogram in that one-hour span. All I can say is it did not work out as I planned. It all went down hill for me there, physically speaking. That chalky drink gave me the worst stomachache in history. Remember the scene from "Dumb and Dumber?" That's all I have to say. By the time I got back to actually do the scan it was almost 3:45p.m.!!! I was afraid I was running out of chalky stuff inside my body and would have to do it again. Luckily, this was not the case. Once inside, the worst part for me began and the anxiety. I was strapped down my legs anyway, I had an I.V. put in my arm to inject more dye, which burns like a mother f!#@$% and the scan unit had Mickey Mouse stickers, Ariel the Mermaid and all kinds of cutie stickers to remind me of my kids. Meltdown in progress..... Once I finished this horrible procedure (at least to me anyway) I felt like I was truly going to faint. It was 5p.m. and I had no food in my system since 9p.m. the previous night plus lots of nasty dye. 

So, I come out looking like death and Dave says, "Why don't you have a bite of your hero?" Good idea I thought. A bite, I inhaled that sucker!!! It was soo good. It's actually called a "Godfather Hero" and it was!! So now, I'm off to meet the doctor, two hours late with two bottles of chalk substance in my body and a huge combo of deli meats!1 Oy! I'm feeling pretty gross right about now. 

5p.m. - We hurry to the next building to see if by chance the doctor is still around. As I walk into the room the Dr. is coincidentally asking the receptionist if he knows what happened to me. I say, "Are you Dr. Cohen?" "Yes, I am," he answered. And I lucked out! I got a lot of my questions answered and he asked ME a lot of questions, similar to those the shrink did but I stuck to my story. LOL! 

What I didn't know is that he was going to examine me!!!!! Oh, I can't even tell you how my stomach was at this point. Please don't touch my stomach, I kept thinking. Please, please. But that he did, my stomach, my kidneys, my heart. Lucky for me & him...no catastrophes. 

After that meeting I said to Dave I'm done. I didn't care if I still hadn't seen the social worker. I wanted out of there. And so ended my medical day at 6p.m. By now all the stomach pains, stress, dye, hunger and everything else had creeped up on me. Still, I said yes to going to a Greek restaurant. Conclusion - I got so sick I could not get on my flight that night home, even though I had promised Chi Chi (my 6-year old daughter,) I'd be there in the a.m. to take her to school. It broke my heart, but it would have been a disastrous plane ride. 

As soon as I got back home (their home) in Long Island I put my head on the pillow and waited until the next day. All in all, it went well. At least until about 2p.m. or so. Everything else is just me being a baby. I'll have to wait until the end of this week for all the results and if it's all fine, the surgeries are scheduled for Thursday, Nov. 20th.