Hello, my name is Krisna!

[Krisna]

I am 35, I live in the Seattle area.  Fair warning my story so far is a very long one!  My kidneys failed when I was seven years old.  I was diagnosed after going into congestive heart failure.  Luckily I was already in the hospital for an unrelated operation.  I was sent to Children's in Seattle, WA and put in the care of Dr. Robert Hickman (the Hickman catheter guy)!  Diagnosis, Glomerulohephritis (Chronic Kidney Disease) of unknown origin!  My dad, who was a 5 antigen match, donated one of his kidneys to me when I was eight and it functioned for 8 & 1/2 yrs.  I received my first cadaveric kidney one month after my 17th birthday, it was a 6 antigen perfect match!  I had family problems on top of everything else one of which is a mother with bipolar disorder.  So, being the oldest of four I was often left to care for my 3 younger sisters.  It got to me when I was abt 19 and I started going out partying and drinking every night, starting smoking cigarettes and quit taking all of my meds including the anti-rejection drugs.  That lasted for abt 6 months.  I was 20 by then and my dad had found out.  I'll never forget the day he came to my room (my parents were divorced when I was 9), so he came in to my room and asked me point blank if I was taking my meds.  I said no, and he said, "well you have an appt. with your nephrologist tomorrow and you'll be lucky if you still have a kidney!"  "And if you don't quit what you're doing!  You're gonna kill yourself!"  I went to the doctor and she said it would be a matter of weeks before I needed dialysis.  I started taking my meds again and quit drinking and moved in with my dad.  I had the kidney for almost three more years!  I tell this part of my life as a warning to young people with kidney disease.  It's not worth it!  I know it sucks sometimes but trust me taking care of yourself and having that transplant as long as you possibly can is more important!  I still feel guilt abt what I did.  Why?  Because somebody else could've used it!  Somebody who would have taken better care of it!  I did get another chance though!  After changing doctors  and telling the whole truth.  I had returned to dialysis in Jan. '94 after #2 finally rejected and I had no intention on going for another.  Call it guilt, but I didn't feel I deserved another one so I didn't even ask.  Then a year a half later I changed doctors and she asked me why I wasn't on the list so I told her everything.  Long story short-I got on the list again and age 24 I received transplant #3 which was another 6 antigen perfect match.  I was out of the hospital in a week and doing well but something didn't feel right to me.  My labs were great, the kidney was working better than they could ever hope for in a transplant but I felt something was wrong.  So, I called them every single day trying to get them to listen to me.  They didn't...until 5 wks from the transplant day they did a routine ultra sound and saw something wrong.  There was an aneurysm in the artery to the kidney.  I had emergency surgery to repair the artery which required removing the kidney, taking the large vein outta my left leg and using it to replace the damaged part of the kidney's artery, then replacing the kidney.  Everything went well and the labs returned to the great numbers they had been before.  My Creatinine had been around .04 from day one!  But even after that I still felt like something was wrong and I tried to tell them again and once again they finally ordered an ultra sound.  This was exactly 9 wks from my transplant date.  This time it showed what looked like a clump of blood vessels or something they weren't really sure but I had emergency surgery all the same and it's a good thing too!  As it turned out the kidney had become infected the last time they opened me up and the infection had spread down my right leg.  They had to remove the kidney and the infected portion of the artery in my right leg, tying it off.  I found out all this after waking up and I could tell by the look on my family's faces that I no longer had a kidney.  I had to wait several months before having bypass surgery to restore blood flow to my right leg.  Basically a vascular surgeon put a tube from my aorta to the artery in my right left so that I can walk without my leg cramping up all the time!  So, shortly after that surgery I was placed back on the list.  Abt a year and a half later I got transplant #4, another 6 antigen perfect match!  And once again there was a problem.  As I am waking up from surgery I hear a voice say, "There's a problem with the kidney, we have to take you back to the OR."   I later found out that the ultra sound tech who remembered me from my previous transplant decided to do an ultra sound in recovery.  Well, it's a good thing because the kidney had shifted and rolled onto its artery cutting off the blood supply to the kidney!  Luckily they were able to restore blood flow and it worked again but it was damaged so there were problems  One of the main problems was that it wasted everything it was supposed to keep.  Like, water, potassium, sodium, calcium, phosphorus, magnesium, etc.  You name it, I took it in a pill form to try and keep up.  After two years the dehydration started.  I kept getting dehydrated because I couldn't drink enough fluid to keep up with the kidney.  I was drinking the the equivalent of 5 64 oz. bottles of Gatorade plus two more of just water!  It wasn't enough!  I had it a total of 4 years and the last two were spent mostly in the hospital.  I returned to dialysis on Sept. 6, 2002 and have been doing it every since.  In Dec. 2002 I had a near death experience but I think I will save that one for another day!  I need to get to bed as I have dialysis tomorrow! 

I still feel guilty abt messing up my 2nd transplant but I don't believe there is anything I could've done differently to change the outcome of transplant #2 and #3 was just a fluke!  I am no longer eligible for transplantation but tht is a story for another day!  And an equally as long one as this!   Thank you all!  This is a great site and I'm glad I found it!

[lola]

 

[bolta72]

What a great intro, welcome to the family.

[Bajanne]

Welcome to our community!  WOW! That was a great intro.  I am so sorry Epoman is not here to read that.  He loved long and detailed intros.  Thank you so much for sharing with us.  That is also a great warning to all of us, not just young people.  I was getting a bit non-compliant with my medications. But as you show, it is not worth it.  Last month I finally took my cholesterol medication as I should and shocked myself by losing 88 points, bringing down to a more proper number.
There is so much in this site than can be helpful.  But even more than the information, is the family that has developed here.  Please take advantage of all this site has to offer.  We are glad to have you with us. 


Bajanne, Moderator

[boxman55]

Welcome Krisna, Wow is right you have come far, very interested in the rest of the story. Take care...Boxman

[angellady07]

Welcome Krisna. 

[KR Cincy]

Welcome Krisna...I'm also a newbie, but I think you'll find this a very welcoming and comforting place to share stories, ask questions, or just rant a bit!

[Hawkeye]

Hello and 

[Rerun]

Hello Krisna and welcome to our site.  I'm originally from Spokane, so we are both form the state who invented dialysis (in my opinion).   I started dialysis in 1984 and had 1 transplant that lasted 17 years.  I feel very blessed.

You have been through the mill and all this started when you were only 7.  I would love to hear more about you. 

There is another guy from Seattle Bill Peckman on this site. 

I'm glad you found us.   

[Laurie]

 

[Ken Shelmerdine]

 

[MyssAnne]

Wow, Krisna!! You've been through a lot already!  I'm sure glad you're here, and sharing your story with us!   

[RichardMEL]

wow.. incredible story.. I'm amazed at all the 6 antigen matches you got. Man I want to live in Seattle!! (beautiful part of the world incidently!!! lovely..... hmm will you marry me so I can get a green card and a hopefully 6 antigen match?? LOL ).

Seriously though... that's a lot to go through and you do give us a good warning of what can happen if we don't take our medication either pre or post transplant.... unfortunately you found out the hard way but it sounds like you have learned a good deal from the experience and I hope you will get another chance without so much trauma sometime soon!

*hugs*

[paddbear0000]

Wow girl! You've been through a hell of a lot! As far as your guilt, please don't feel that way. We all do stupid things to ourselves. I'm diabetic and didn't take my medicine for a long time and now look where i am. I know how you feel. I feel that guilt everyday when I look at my husband. He goes through everyday trying to figure out why I did that to myself and what he can do to help. I hope things eventually work out for you and settle down! 

[Krisna]

Hello Krisna and welcome to our site.  I'm originally from Spokane, so we are both form the state who invented dialysis (in my opinion).   I started dialysis in 1984 and had 1 transplant that lasted 17 years.  I feel very blessed.

You have been through the mill and all this started when you were only 7.  I would love to hear more about you. 

There is another guy from Seattle Bill Peckman on this site. 

I'm glad you found us.   

I have met Bill before...once quite a while ago.  I have been a patient member of Northwest Kidney Centers since the very early '80's and I agree dialysis was invented in Seattle!  So, I have met a lot of fellow kidney patients in my life.  Some of whom couldn't have a transplant and some who didn't want one!  I met a woman who had been on dialysis for 15 years by choice!  That blew my mind!  Spokane is cool to visit but I wouldn't wanna live there!  I put Seattle on my forum profiles but it's really a generalization.  I actually live south of Seattle!  I just don't like to be specific online!  But I have lived in the area all my life!

And there is a whole lot more to my story! 

[angela515]

  I look forward to hearing the rest of your story!

[brenda]

 

[donnia]

Wow!  What a great intro!  You sure have been through the ringer girl!!!!  Now.... you have us patiently waiting at the ends of our seats for the rest of the story!!!!

 

[Krisna]

Okay so here's the rest of my story so far.  lol

First I left out something in the first part.  When I was 15 my doctor told me that one of the drugs I had been taking for my first transplant had caused my parathyroids to become overactive and they were pulling all of the calcium out of my body and my bones!  The medication was called Imuran and it was used to suppress the immune system in the 80's & 90's!  So, I had have my parathyroids (located on the corners of the thyroid) removed and part of one was placed in my left arm.  They chose the left because it was not a viable place for a future dialysis access since I had already had a Scribner Shunt in my left forearm when I was 7.  Yes, I had to do the old acid dialysis!  So, that surgery took place when I was 15 and in 9th grade.  I had failed 7th grade due to family problems.  But my doctor told me we'd do the surgery over Spring Break so I wouldn't have to miss any school and the surgery didn't work like she expected.  I never made it back to school that year!  Then the next fall I went to 10th grade.  I went to school the first day and the third day then stayed home thinking I had the flu and finally went to the doctor.  She said, "I'm admitting you to the hospital because you need dialysis today!"  I had emergency surgery to place a dialysis line in my chest.  I had previously had a fistula placed in my right arm but I hadn't done the exercises I was supposed to do so it was not ready! 

So, anyway...

My last transplant rejected in late 2002 and I returned to dialysis on Sept. 6, 2002.  I had been in denial for a while and probably waited too long but I'm still here.  I got really sick for abt the first two weeks.  But eventually I got better and was able to drive myself back and forth to treatments.  There's a center near my house so it's not that bad.  That took my fiance a while to get used to though.  In November we went to visit his aunt and parents for Thanksgiving in OR and I couldn't figure out why everyone kept asking me if I was alright.  But I figured I was just anemic or something since I hadn't been on dialysis for very long at that point.  I didn't think anything more of it until the first week in Dec.

Dec. 6th started out like any other Friday.  I got up and drove to dialysis as usual.  But on the way home I got a flat tire.  Luckily I was able to pull into the post office and get a couple of young guys to change it for me!  I went home and got hubby (I call him that even though we aren't married.  We've been together since '93) anyway, we went to our local Les Swab and walked several blocks to a nearby restaurant for dinner.  Then he offered to go get the car and pick me up but I said no, I needed the exercise and I felt fine.  We got the car and went home since he had to work the next day which was overtime for him.  He works for one of our local power companies in the underground vaults and they do some things on the weekends to avoid clogging up traffic during the week.  So, anyway we were down to one vehicle at the time and he was taking the bus or carpooling or something...during the week.  But he had to be there really early on Sat. and the bus wouldn't get him there in time so I had to take him.  We were supposed to get out pics done for our Christmas cards that eve. so I wanted to go do girl stuff while he was at work which was why I didn't just let him take the car.  But when we got up that Sat. morning he looked at me and asked, "What's wrong?"  I said, "I don't know, I just don't feel right."  Then he asked, "Do you want me to drop you off at Swedish on my way in to work?"  I said, "Oh no, if I feel worse, I'll just drive myself in." 

So, we left to head up to his place of employment and I drove home without a problem.  I have always been sorta paranoid when it comes to locking my doors and windows but this particular day something or someone told me to leave it unlocked.  I was going to lie down on the sofa and take a nap before I set out to do my errands.  And again some little voice told me to grab the cordless phone.  I listened to the little voice and I'm real glad I did.  Abt 30 min. after lying down on the sofa, I awoke with this excruciating abdominal pain and I could not get up!  In fact, I could barely move my arms to grab the phone!  I dialed 911 and said, "I need the medics!"  The operator asked, "Why do you think you need the medics, ma'am?"  So, I said as fast as I possibly could, "I've had 4 kidney transplants and the last one just rejected in Sept. and my doctor told me the kidney was swollen.  I also have a hernia and I think either my kidney has ruptured or the hernia has!"  Then she said, "Hold on!"  and transferred me to the fire dept. where I had to repeat was I had just told the operator.  Then I was asked if the door was unlocked and I said, "Yes, it is!"  So, they are only a few blocks from my house and got off the phone with me once they had all the info they needed.  I called my hubby and told him that I had had to call 911.  He was upset with me for taking the care, but he wouldn't be for long.  Once he found out what the problem was, everything changed.

This is the beginning of my worst medical problem ever! 

So, I was taken to Swedish where the doctor sent me for a CT scan to try and see what was going on.  I still had/have 3 transplanted kidneys in my abdomen plus my two natives.  So, the doctor told me that they were unable to see anything on the CT so they needed to do exploratory surgery.  I called my hubby and told him what was going on and he called my dad.  That was a Saturday and I didn't wake up until the following Thursday!  I was in a coma in ICU on life support!  Lucky for me there are some great doctors at Swedish and I have some of the best in Seattle!  As it turns out I was sorta in the right neighborhood with the hernia thing but I was wrong too! 

This is what I learned when I woke up in ICU.  My dad was there and after convincing the nurse that I could write so my dad could understand.  After being in a coma your brain does not function right for a while making it hard to write.  My dad and I have just done that a long time.  He just watches closely the order in which I write the letters!  So, I was told that when they took me in to do the exploratory surgery the labs that had been drawn in the ER had come back showing my potassium was at 10!  The surgeon who is one of the transplant surgeons saw what was wrong but it was too risky to fix with my potassium that high.  Of course they rechecked it because she knew I had dialyzed the day before and my family assured her there was no way that was right!  So, I was taken to ICU and dialyzed for several hours in an attempt to lower my potassium level enough so they could go in and fix the problem.  They eventually gave me drugs to fool my body into thinking my potassium was normal.  In the meantime the surgeon slept in the OR waiting for my potassium to get to a safe level.  I told you there were some great doctors there!

So, early Sunday morning I was finally able to go back into surgery.  The problem was that my sm. intestine had become tangle in all the scar tissue.  I had also had a hernia a few years before and also had this mesh put on my abdominal muscle to hold it together.  So anyway when my sm. intestine strangled it caused my bowel to leak out into my entire body, poisoning me!  The surgeon went down to talk to my family.  She said, "Look, I know you've heard this before  but I really don't think she's gonna make it this time!"  Of course my dad wasn't surprised.  I was 30 years old...almost 31 but I had been living with CKD for 23 yrs.  So, this did not come as a shock to anyone in my family.  The surgeon returned to the OR and did her best to remove the dead portion of my sm. intestine and clean everything up.  My heart stopped a few times but she was able to get me back!  Luckily I did not need a colostomy.  I was placed in a drug induced coma to allow my body time to heal.  I was in ICU for almost 2 months before being moved to the Renal ward. 

I'd like to say that was the end of it but it's not!

The labs the doctor had done every day showed that I was losing blood somewhere.  And since there were no visible signs of bleeding it was determined that I was leaking internally!  So, once again I was rushed back into surgery where it was determined that I was leaking from my stitches from the intestine operation.  That was fixed but I was taken back to ICU for a little while!  Once I was stable, I was taken back to the Renal ward.  A few days later I began vomiting blood non-stop.  The doctor placed a suction tube down my throat into my stomach to try and suck all the blood outta my stomach.  But it didn't help.  I was rushed once again to the OR for emergency surgery.  (This is all going on in the month of Dec. 2002)  And once again, my heart stopped on the OR table.  And the surgeon brought me back!  Again!  I learned that I had ulcers in my stomach and all up and down my throat, esophagus, etc.  and also polyps.  The surgeons were able to stop the bleeding and remove the polyps.  I was given blood transfusions because I had lost over half my total blood volume! 

After that I recovered rather quickly but my muscles were extremely weak.  I had to do physical therapy before I could go home and I had to use a walker.  I couldn't walk very far before I would get tired and have to rest.  I was released in early March 2003 and I went to my dads' to recover.  I had a real hard time with pain and I was taking a lot of pain meds and not eating properly.  I was living on Popsicles.  One night in late March I awoke in the back of an ambulance.  Apparently, my dad had awoken to the sound of me gurgling.  He went into the room I was sleeping him and found me unconscious!  The medics did a blood sugar and found that it was only 16!  Yeah, I was on my way out!  I'm not diabetic!  I was given a glucose shot to raise my blood sugar and revive me.  The medics got an order from the doctor to start an IV in my jugular vein to give me fluids and probably more glucose.  I was taken to Swedish again and my Nephrologist changed my pain meds putting me on a fentanyl patch and one other oral medication.

I went back to my dads' a few days later.  I went home in the end of April.  I was sleeping on the sofa while I recovered because the water bed made my abdomen hurt too much.  One night my cat woke my hubby up.  He came out to the living room to find me unconscious again...  He called 911 and this the paramedics told him they were taking me to another hospital in Seattle which is owned by the same company as Swedish because Swedish ER was closed to ambulances.  They just don't know my history and I was out of my mind so I was no help at all.  So, I was taken there and when I woke up I felt so much pain it was horrible even though I had a fentanyl patches (I was on an extremely high dosage).  So, the doctor at this hospital decided it would be a good idea to give me a fentanyl sucker too!  That made things worse.  Labs were drawn and my doctor came to that hospital and was not happy that I had been taken there, and he told me that I had OD'd on fentanyl.  My doctor said next time make the hospital call him!  Anyway, I was detoxed and regained my faculties!  That was really messed up 'cause I couldn't have told you my middle name, my phone number, my parents names, etc.

I recovered from that and the sm. intestine thing and regained most of my muscular strength.  I went on with my life and I experience an occasional bump in the road of life but nothing as serious as what happened in Dec. 2002.

I did have another hernia repaired in Aug. 2006.  While in my abdomen the surgeon discovered a problem with my ovaries.  He had to call in an OB/GYN surgeon to help out and also get consent from my dad.  I had cysts on both my ovaries and there was one attached to the right one the size of a grapefruit.  The OB/GYN surgeon removed the right ovary and cleaned up the left one.  He said I may eventually need to have it removed too!  So, I woke up from surgery and found out.  I had been having pain for a long time and had been trying to get someone to listen to me.  Finally!  Someone had found the reason.  I feel bad because I lost an ovary but I'm happy that they didn't have to remove both of them. 

A few weeks ago I went to my doctor abt my blood pressure.  It had been running around 280/160 for a while.  It had just shot up one day.  So, I had to go see him early.  He informed me that it could be one of the kidneys causing it.  He said that the artery to the kidney could be closing which would cause the kidney to release a hormone that would raise my blood pressure.  He said that I might need to have a catheter placed into the artery and they would clot the artery off.  But in the meantime he put me on some new bp meds.  So, now I take 3 bp meds and they seem to have helped!

Right now my problem is dental.  All the years with kidney disease and low calcium caused problems with my teeth.  Now I need them all removed and my jaw has sunk down.  And my insurance company is refusing to pay for the oral surgery and the process to bring my jaw bone back to where it belongs.  My teeth are really really bad but the insurance company says that they don't have to pay because we changed insurance companies.  Which we didn't have a choice in the matter.  Hubby's employer changed coverage because they had too many complaints abt the previous one.  The previous one refused to approve the surgery until the very last day of the year.  So, the new company says to take it up with the old one and they're not paying it!  I've got some people working on a solution for me but it's frustrating!

So, here's where I am with the transplant thing...

I can't get on the list with my teeth the way they are now.  But I don't think I want another one.  At least not right now.  But I certainly wouldn't change any of the ones I had! 

So, that's pretty much it! 

[Ang]

how  the  hell do you  respond  to  a  story  like  that
keep  up  the  good  fight
you  give  me  heaps  of  insperation.

[paddbear0000]

Geez! Talk about 9 lives!!! I sure hope things have calmed down for good now! 

[Krisna]

Geez! Talk about 9 lives!!! I sure hope things have calmed down for good now! 

Yeah, other than the dental thing and a few family problems my life is pretty dull right now.  Which I am glad of! 

[Redbomb]

Wow!  What a story!  Oh, and welcome to IHD!   

Hmm, one thing, if your insurance is Group Health insurance (Dental is a whole different ballgame), and you've been covered non-stop through group health insurance, "normally" the waiting period is waived and the new insurance will cover.

You've probably already done this, but have your hubby's HR department or Health Group contact look into this to see.

[Roxy]

Wow! What a story. You have so much strength to go through all of that. It is truly amazing. 

[MyRenalRomance]

 
I am practically speechless.  You have been through so much.  Amazing . . . simply amazing!