I get a kidney

My wife was not able to donate a kidney because the kidney’s have an extra vein.  Making the veins too small to be a good graft.  Now they have called me to go to the hospital to get a kidney from a cavaver donor.  Even one time, they called us.  They had the kidney and looked like it was going to be a good match but because the other doctors weren’t their to harvest the other organs, we were put up in the hospital overnight.  When they harvested the organs in the morning, the kidney was not suitable for transplantation.

May 5, 2019.  They called again and had me come down to the hospital.  Just like the other times, they sent me to dialysis but since it was a Sunday, they let my wife join me to keep me company.  We were the only two in the room besides the techs.  Then they gave the call to send me to the operating room.  So I left my wife and we went in for the procedure.

The next day they went seeing enough urine coming out of my body.  They thought it could be a clot so they gave me heparin.  I usually have low platelets to start with so the hepeurin just made the bleeding worse.  That Tuesday, they went in for a second time and told me that they just tightened everything up.  They try not to keep you in the hospital very long.  If you got a transplant Sunday or Monday, they wanted you released on Friday.  To due that you had to be up and walking by Thursday.  They were having a real hard time understanding why I was not walking around like everyone else on Wednesday.  I think they forgot all about them going back in on Tuesday.  But by Thursday, I was walking around.  I was doing what I needed to.  They were thinking about sending me into rehab but when I explained about them going back in on Tuesday, I was allowed out on Sunday.

Now after you received a kidney transplant at UF, you have to spend at least the next 6 weeks near the hospital before you home.  Our daughter was able to find us a nice place to stay in Gainesville for that time.

Our schedule was to return the hospital Monday, Wednesday and Friday.  We did well the first week but the second week being off my old blood pressure pills my blood pressure dropped.  They put me in the emergency room.  Infection can be very common after kidney transplants.

When you heal up enough, they have a series of procedures you have to go through.  One is removing the staples from where they did the operation, but before we went to the surgeon to have them removed we went to the kidney doctor to make sure we were healed enough.  By that time I had pulled most of my staples and she removed those.  Leaving only a few for the surgeon to remove.  They put a tube in your bladder to make sure it can still inflate, since it has been basically 10 years since I used it.  Now they have to remove it.  They put you on a table. Take your pants off and the doctor tells you to cough hard and zip it is gone.

 

Week ten

Still having to eat a lot of protein to keep up.  Which means that I have to go the bathroom a lot too.  My legs are still real painful.  It is kinda of weird but they hurt when you touch them and they hurt when you try to walk on them.  Nothing new this week.  Everything seems to be hanging in there.  Hep C is still showing as undetectable.   The doctor moved the appointment to the 20th and we seem to be moving forward.  Talk to you next week.

Week Nine

With the red blood cells so low because of the ribavirin, I am not able to do anything.  Trying to get a hold of the doctor to see if there is anything I can do to fix that.  Finally got a hold of the kidney doctor.  She put me on megace.  Its side effect is to make you hungry.  I am very hungry for protein.  I even wake up at 2am in the morning starving for protein.  My numbers from the red blood cells aren’t getting any better, but at least with this need and want for protein they seem to balance each other out a little bit.  I eat a lot.  I go the bathroom a lot.  I am still real tired but at least I can get some things done.  Talk to you next week.

Week eight

I made it to my primary care physician’s appointment.  They rolled me in a wheelchair and she sent me directly over to the emergency room.   Once there, they tried starting an IV from my left hand, they tried drawing blood from my left elbow and they finally got blood from my left wrist.  My red blood factor had dropped to 7.5 and they think it might be from the Ribavirin I am taking so they placed it on HOLD.   Come Friday it dropped to 7 but steadied.   They seem to think that the best course of action is to hold me until Saturday and while giving my dialysis to transfuse me with 2 units of blood.  Talk to you next week.

Week Seven

Week Seven I have had some difficulties.  I went to the nurse practitioner and they gave me some type of breathing treatment.  As soon as they were done giving me the breathing treatment, I couldn’t do much of anything.  My legs  were hopping around uncontrollably and my arms were flailing around.   My mother-in-law brought me home and I went to bed for three hours.  I am not feeling much better but I have an appointment with my primary doctor next week.  Talk to you later.

Week Six

Still fighting this cold.  It is making it very hard for me to eat.  I eat a little less for breakfast.  Half of what I eat for Lunch and a third of what I normally eat for dinner.  Most of the things I was suppose to get done this week did not get done.  The doctors gave me a chest xray and said it is not pneumonia.  So at this time I don’t know if the fatigue is brought on by the cold or the medicine.  Hopefully we will get through this pretty quick and we can get on to what is next.  Talk to you next week.

Week Five

This week we found out that the viral load went from 8.8 million to undectible.  But it seems when we found out, I caught a cold.  So I am feeling weak and it is hard to eat.  Hopefully this cold won’t last long.  I have lots of things to do this week.  Hopefully everything gets better.  Talk to you next week.

Week Four

This is going to be the week all the big blood tests are going to be due.  We will find out about the change in the viral load and all the other numbers.  So far the numbers have been looking good that we can tell.  The doctor has started reducing my Medrol.  If everything goes right, I will be off it in about a month.  I am still having problems with bruising.  I am also having problems with the sun.  I have gone to wearing a hat and sunglasses during the day.  As far as the itching skin, we are trying something new.  I am using Aloe aftercare.  That is the stuff that you put on after you get a sunburn.  It is helping much more than using moisturizing lotions.

I am having some problems with my leg muscles.  They seem to be cramping and always seem to be tight.  Eating is still going okay.

Our second month’s supply of pills came this week.  That will do it.  Talk to you next week.

 

Week Three

Week Three is going pretty well.  The worst thing about it is I still have diarrhea in the morning which started in week two.  We were able to cut the Medrol in half from 8 mg to 4 mg and my joints are still doing great.   We even took our furniture off their risers.  It does seem though that my eyes are getting a little more sensitive to the sun.  So we bought a hat and sunglasses .  Besides that everything seems to be going good.  Talk to you in week four.

Week One

We finally got the medicine.  We are now heading up to the hospital to see how to use it.  Remember this is a three hour and a half trip one way.  It comes in a box that holds 7 daily boxes.  In each of the daily boxes is 3 pills marked am (we were told we take that in the morning) and one pill that is marked pm.  (We were told to take that one ….wait for it….in the evening.)  They also signed us up for three surveys.   Two we will take at different times through treatment with a couple after treatment is finished up to a year later.  The other one keeps a sample of my blood and my reaction to the drugs in a big catalog.

My joints are feeling great.  I feel stronger than I have felt for a long time.  I am getting six to seven hours of sleep a night.  Hopefully everything continues along this way.  Talk to you next week.