We are learning a lot about the immune system and how it all works. The problem Art is experiencing has to do with some antibodies forming in his blood. To fight them the doctor initially used a plasma replacement therapy shortly after the transplant and it seemed to work. All antibodies live in the plasma so this was intended to get the bad antibodies out. However a couple of weeks after the treatments stopped the situation came back and began to clog up the kidney again.

So the doctors decided to get the Big Guns out and use a strong medicine called Rituximab. According to Wikipedia “Rituximab destroys B cells and is therefore used to treat diseases which are characterized by excessive numbers of B cells, overactive B cells, or dysfunctional B cells”. The “B” cells make antibodies so the idea now is to remove the anti-bodies and also kill all the cells that make antibodies.

Apparently Rituximab is used in fighting certain blood diseases like leukemia and lymphomas. The doctors are hoping that when the body slowly begins to re-create the B-cells and eventually the antibodies again…it will do it slow enough to allow Art’s immune system to deal with it.

This week is the last of the 4 treatments and it takes the better part of a day laying in a bed in the out-patient area. They give the medicine via an IV and do not rush it, so it takes at least 5 hours to get into the system.

In the next few weeks we will find out if the Big Guns did the job or not.

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Art has been going to the hospital at least 3 days a week to receive plasma-replacement treatments (apheresis) to help eliminate the antibodies that are giving him problems. When we were at the hospital last Friday, one of the doctors overseeing these treatments met with us and suggested that our 8:00am Monday appointment might work better to be moved to 10:00am. It would give us and the hospital staff more time to get there. We were to get a foot of snow on Sunday and below zero temps on Monday.

We agreed.

As most of you know the “polar vortex” hit Indianapolis very hard and we got a lot of snow with wind chills near -40 degrees. For only the second time in recent history the city declared a travel emergency and told the public to stay off the highways. We called the apheresis team and asked them to reschedule for 8:00am Tuesday morning.

Then at noon the mayor of Indianapolis changed the travel advisory to “essential travel only”. They showed pictures of the expressways that were covered with ice and snow but there were no cars on the roads. So after a little thought Mary asked if it would be better to go on Monday afternoon in the daylight and light traffic or wait until Tuesday morning and deal with a rush hour crowd leaving in the dark. We called the hospital and changed the appointment to 2pm Monday.

We drove on the expressways. There were parts where it was pure white-knuckle driving. We didn’t get much over 25mph but got there just fine and Art had his treatment. We need to be back on Wednesday at noon but hopefully that will not be a problem.

Last Friday Art went to his scheduled clinic at IU University hospital. Blood tests showed his creatinine levels were climbing dangerously fast – a complete turn-around from last week. The result – he was admitted to the hospital. They tell us to bring a bathroom bag and some clean clothes to every clinic visit in case you need to be admitted.

Almost immediately the doctor thought a blood pressure medicine that he had started last week was causing the problem, so he stopped the pills. However, to be certain about what was happening, he scheduled a kidney needle biopsy late in the day on Friday.

Biopsy results came back late on Saturday. The doctors informed us that Art was experiencing the same problem with the immune complex clogging the kidney that happened 5 days after the transplant. Everyone thought this had been resolved with a series of plasma treatments where the plasma is replaced with an artificial product.

So the doctor ordered an emergency catheter to be put into Art’s inner thigh to provide access to a vein and an artery so another series of plasma treatments could begin immediately. It was a painful experience but had to be done. Treatments were performed late Saturday night and Sunday morning,

We had planned on having our family Christmas on Sunday. Since Art could not be there we did a “FaceTime” session and displayed his face on a big-screen TV so everyone could see him and he could watch everyone open gifts. We even did a family picture with everyone gathered around the TV. It wasn’t ideal but was still pretty nice.

Another plasma treatment was done Monday morning and in the afternoon the surgery team was ready to install a new central line. The ONLY good thing about it was that they gave Art some good drugs to help with the pain. It took about an hour but finally was completed. This was disappointing since the one he had had for 5 months had just been taken out last week. Later that evening a urologist came to Art’s room and removed a stent that had been put in between the kidney and the bladder during the transplant surgery. Art still shudders when he thinks about the pain involved with the procedure.

On Christmas Eve Art had another plasma treatment using his new central line. A doctor then removed the emergency catheter from the inner thigh. He was finally discharged to go home.

More plasma treatments are scheduled (which take about 1 ½ hours per session) and some special treatments as they try to completely rid Art’s body of the antibodies causing the problems.

So we understand the phrase “it’s not over until it’s over”.

Second best option

Second best option

Almost anyone could give it some thought and come up a list of activities that are simple but bring some level of satisfaction. Art has always thought that doing familiar things with those you love is a good example. We like to watch Wheel of Fortune and Jeopardy and feel good if we can solve a few of the puzzles or answer some of the questions.

Art also enjoys driving on a busy multi-lane highway – hitting a yellow light and then watching the traffic behind him have to stop. He says it warms his heart. Well he has just added another simple pleasure to his list.

Taking a shower!!!

For the last 5 months with the dialysis catheter in his upper chest one of the big rules was to NEVER get it wet. Every time the nurses changed the dressing on it, they went to great lengths to sterilize the area. At least he could soak in the tub which wasn’t too bad.

After the transplant he could not take a shower and could not soak in a tub. Morning cleaning rituals included a wash cloth, which was OK but not considered a pleasure.

Now with the catheter removed and the incision healing nicely…this morning was his first shower in 5 months. Silly as it may sound…this is now his number one simple pleasure.

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Last Friday Art was scheduled for one of his weekly clinic sessions and have his dialysis catheter (called a “central line”) removed. This catheter had been in place for nearly 5 months and the skin had adhered to the apparatus fairly tightly. Art had been told by a kidney recipient that this might be a tough procedure…however the staff at the clinic said it was straight-forward with little pain.

We arrived a little before 7:00am at the lab for the blood draw. The nurses there draw blood all day long so they know what they are doing. However she had a very tough time connecting with the vein so there was a lot of pain and discomfort. We waited a couple of hours, then met with the doctors to go over the blood results. Overall they were very pleased with the results but indicated his hemoglobin was still a little low so they ordered a shot. We went to the transplant outpatient area and the nurse prepared the shot. This kind of shot is very painful so the nurse told Art to take a deep breath and blow out like he was trying to put out a candle 20 feet away when the shot starts.

So the first 2 procedures were not the easiest. Maybe the catheter removal will be simple.

We waited another hour at the surgical area. The doctor, along with a resident in training indicated they usually don’t need to give any pain killer since this is a simple procedure. That sounded good until the doctor saw the type of catheter Art had and said “maybe we will use a touch of pain killer”. The catheter was one with a collar that had been used for dialysis – not just the plasmapheresis treatments. This type of catheter is intended for long term use.

He numbed up the area and started instructing the resident how to get it out. She tried for a while but finally he decided to take over. Every so often Art would squeal if he felt a lot of pain and the doctor shot more lidocaine into the area. He kept apologizing for taking so long and for all the cutting he had to do. Finally, after about 20 minutes, he had it out.  He super-glued the incision, gave one final apology and left.

Art said he couldn’t feel anything in the 1 inch incision, but his chest felt like the doctor had at least one knee on it during the entire time. Later in the day after the pain medicine wore off, the area was certainly quite painful.

So even though the procedure was rough it was great to get those tubes out of his body. Just one more step on the road to recovery.

Road to Recovery” is a phrase that is often used to describe the process of taking a bad situation and returning to some level of normal. It can refer to a health situation or something as big as Detroit trying to recover from bankruptcy. For Art’s kidney transplant we are beginning to see what the recovery will look like although the exact road we will travel is not totally clear.

We look back on our time in Alabama last winter when we both made a commitment to get into shape  - and proceeded to work out nearly every day with weight lifting, water aerobics and/or racquetball. Art believes if he had not worked out then,  the impact of the transplant on his general health now would be much worse than it has been. Since the end of May he has not had the energy to do much of anything.

The road is beginning to come into focus at least for the short term. Art’s issues with the transplant are beginning to be resolved. The 12 inch incision has started to heal.  There is still a fair amount of pain but he is beginning to manage the pain with just Tylenol and not the big pain pills. The central line catheter used for dialysis will be taken out this Friday and for the first time in 5 months….there will be no artificial tube or anything else connected to his body. He will soon be able to take a shower again!

The biggest shock to Art is when he looks in the mirror. He has lost over 60 lbs and there is no fat at all on his body. The muscle mass has also been severely depleted and he is complaining that he looks like Gollum from the Lord of the Rings. When you are past 60 and lose a lot of weight the skin simply doesn’t tighten up and tends to just hang there.

Trying to look on the bright side he has an opportunity to replace his body mass in a sensible and healthy manner. It is like having a clean slate to work on. Most people usually have to lose a large amount of weight and also build muscle. Art only has to build muscle. He has stated that one of his goals would be to run a 5K with our daughter sometime in July of 2014 so he is already thinking of setting goals on this recovery effort.

The new kidney is working great and the doctors are only making small adjustments in his medicine each week so we are thankful that it appears the worst is over. However there is a small stint that was inserted in the tube that connects the kidney to the bladder during the operation that will have to be removed in a couple of weeks from now. He doesn’t want to think about that right now.

It’s not exactly clear what the road will look like a couple of years down the road but for the short-term it is coming into focus.

Art went back to the hospital on the Friday after Thanksgiving to begin his twice weekly kidney clinics. These checkups are how the doctors confirm that transplant patients’ blood statistics are heading toward the goal of full kidney functions.

Blood was drawn for a series of lab tests before another plasmapheresis treatment. Then he met with one of the kidney doctors to review all the lab numbers and make adjustments to his medicines. No changes were made in medicines this time, but Art got a shot to help increase his hemoglobin levels. The good news is the kidney is working and the creatinine level was down to 1.8 which is acceptable. Before the transplant the creatinine level was over 7.0, which is very bad.

Today was another blood test and plasmapheresis session. The doctor was only available via phone (he was already scrubbed into an operation) but he did give some instructions and added a phosphorus pill to my list of medicines because the level was getting a little low. Before the transplant Art had to be careful not to eat foods with phosphorus (dairy, nuts, seeds) and take phosphorus blocker meds before each meal. Now he needs to eat more of the forbidden foods.

Another doctor removed a drain from his lower abdomen that had been inserted to provide drainage from around the kidney after the emergency operation on November 21st. It was a pleasure to get rid of it. Art goes back Thursday for another clinic and apheresis treatment. The creatinine level is down to 1.56 which is really awesome.

The blood tests and clinic visits will continue weekly for the next few months and then at increasing intervals for the next few years – with the goal of no other complications.

The doctors are telling us that we should expect 30 years from this kidney. That works for Art!!!

(Back Home Again in) Indiana is a song composed by Ballard MacDonald and James F. Hanley, first published in January 1917. While it is not the official state song of the U.S. state of  Indiana it is perhaps the best-known song that pays tribute to the Hoosier State.

A typical kidney transplant usually requires a 5-to-7 day hospital stay. After the initial operation Art seemed to be recovering so fast the hospital personnel were talking about letting him go home on day 4. He felt a little guilty thinking he might get to go home before our son Tim (the donor).

Results from a blood test indicated that a certain kidney function was just a little off so they decided to keep him until day 5. It kept going the wrong way. On day 6 a needle biopsy was done to examine the tissue to determine the problem. Pain from internal bleeding due to a vein being nicked during the biopsy caused Art to be rushed to emergency surgery to stop the bleeding. Another surgery – another incision! Doctors said the kidney looked fine and the bleeding was stopped with one stitch.

After sending the biopsy results to other hospitals and research centers around the country looking for feedback on the problem they made an educated guess about how to treat it and started down a path. This was day 9 and Art had gained 28 lbs of fluid weight and could hardly walk.

The treatments finally started to take effect. Blood tests indicated improvement and slowly the fluid was being removed. During this entire process Art was given 5 units of blood to stabilize his hemoglobin. It began to look like we were going to spend Thanksgiving eating hospital food.

Today (Day 14), the doctors admit that they really don’t know entirely what and why it happened but the good news is that Art’s kidney functions are getting back to normal and the extra weight has mostly been removed. Even though there are still a couple of issues that continue to be resolved, the doctors made a decision late today and said those words we wanted to hear….

“You can go home”

So for the next couple of months Art’s life will be to heal up, learn how to drink 4 liters of liquid per day, probably get up many times during the night to pee, walk a little more each day and get used to the multitude of new pills that he needs to take.

It’s good to be Back Home Again in Indiana

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Say Hello to my little Friends