A Transplant for the Cure - DIY IV Treatments and a Blood Clot

A home health nurse is teaching Karen how to administer
the IV treatments for her fungal infection.

Karen and I drove into Higginsville on Thursday morning, October 22nd. It was a beautiful autumn day in central Missouri. We stopped at Confederate Memorial Park on the way home and I took some photos of the fall foliage in the park. (See the video at the end of this post.)

That afternoon a home health nurse came to the house to teach Karen how to administer the IV treatments with the tri-line that had been surgically inserted in Karen's chest. The IV treatments were necessary to fight the fungal infection in her lung. (Later tests showed that the infection in Karen's lung was viral, not fungal. However, the blood work showed signs of a systemic fungal infection so the daily anti-fungal treatments were still required.)

Karen posted the following message on Facebook with this picture on October 22nd;

Most of the summer I had to give myself shots in the stomach for a blood clot. Now I have graduated to giving myself IV treatments at home. This is the new little toy I get to play with for the next week and a half.

Since the stem cell transplant had been postponed indefinitely, I decided to fly back home to Houston the next day. The weatherman in Houston was predicting storms for the weekend, so I wanted to beat the rain.

The next few days were not very good for Karen. She started running a fever and experienced severe pain in her neck. She had to make several unplanned trips back to the Bone Marrow Transplant Clinic for treatment. She posted the following message on Facebook on October 26;

My adventure continues. Saturday afternoon I began to run a temperature and feel chilled. The preceding Tuesday I had received a tri-line catheter in my chest and on Wednesday, I had an endoscopy done of my right lung to check out something they saw on the CT. Thursday, the right side of my neck began to be very sore. By Saturday, when I cough, it produced a sharp pain in the right side of my neck. I called the clinic Saturday night and was advised to come in on Sunday morning. We ended up being there all day. They took a number of blood cultures, and ordered an ultrasound of my neck. Sure enough as they expected, there is a large blood clot in my juggler vein due to the line being placed. They gave me a shot of antibiotic and a new round of blood thinners.

So, now I am back to giving myself a shot in the belly twice a day and that iv antifungal medication for the lung infection.
It is now Monday morning and I did get a good nights sleep and feel some better with the aid of extra strength Tylenol to take the edge off the pain in my neck when I cough, which has not happed much yet this morning - YEA! Have to go back to the clinic today and tomorrow. That's it for now.

We are now waiting for the doctors to set a  date for the stem cell transplant. We are very optimistic that this procedure will give Karen's immune system the boost it needs to defeat the chronic lymphocytic leukemia in her body.

Karen posted the following message on Facebook on October 30th;

From my doctors appointment yesterday, I found out it will be the middle of November before we can reschedule the transplant. Need 4 weeks of treatment for fungus among us, and then try again. Will do another CT next Wednesday to check on lung issue. Still cough some, sometimes better but definitely not worse. Even though they will not let me get out and play in the dirt, which is my favorite thing to do, I can enjoy cutting up peppers for winedrizzles that I grew in my garden this summer.
They tell me because of the Campath, my B and T cells are low and they are the ones that mostly fight viruses and fungus so I guess that is why I have had lingering cold symptoms all summer.

 

A Transplant for the Cure - A Fungus Among Us

Karen Luehrman is filling out paperwork and waiting to
review the CT scan with the pulmonary physician.

Our first stop on Monday morning, October 19, was at the University of Kansas Hospital/Office Building.
Karen had been suffering from a persistent cough for several months, so her doctor ordered a CT Scan of her lungs. The pulmonary physician showed us a picture of the recent scan and pointed out a filmy-looking white area in her upper left lung. He then showed us a scan from several months earlier. There was a noticeable difference, even to an untrained eye.

The pulmonary doctor said they needed to find out if this was a virus, fungus or bacterial infection in her lung. He scheduled Karen to come back on Wednesday so they could put a scope into her lung and get a sample of the tissues. This issue in the lung was the reason the stem cell transplant was postponed.

We then went over to the KU Cancer Center and checked-in at the Bone Marrow Transplant Clinic. I had a series of appointments for my pre-donor tests and Karen had other appointments on her schedule.

I was required to repeat the same medical tests that I had in May. The following tests are required of a stem cell donor:

Chest X-Ray
Labs (Blood Tests)
EKG
Health & Physical/ Consent Appointment

The first three tests were routine and uneventful. The "consent" appointment was an opportunity to meet with one of the transplant oncologists and discuss any questions or concerns. The doctor was a pleasant young woman with a British accent (I am not good at accents, but it sounded British to me). She began our conversation by saying;

"Your stem cells will help Karen so much. They will do her so much good".

I was happy to hear that the doctor was still quite optimistic that this transplant was going to happen. There had been several delays, but the doctor seemed  hopeful and optimistic about the entire situation. Sometimes a few well-chosen words can change everything for the better.

The doctors suspected that Karen had a fungal infection in her lung. They would not know for sure until they got the results of the scope procedure being done on Wednesday. However, they started her on an anti-fungal drug that had to be administered intravenously.

Karen Luehrman was receiving her first dose of
anti-fungal medicine with an intravenous injection.

Karen would have to take this anti-fungus medicine for at least two weeks, so the doctors scheduled a surgical procedure for a tri-line to be inserted in her chest so she could give herself the IV treatments at home.

I would be extremely squeamish about giving myself IV treatments at home. Karen didn't have a moment of hesitation about doing whatever it took to get well. She would not surrender to the disease.

Tuesday would be another full day of medical procedures. Karen would report to a day surgery facility to have the tri-line inserted into her chest and then back to the BMT Clinic to receive her IV treatment. The day ended with an unexpected challenge and a little help from a friend.

A Transplant for the Cure - Complications and Cancellations

Ellen Maxwell, R.N. Blood and Marrow Coordinator.
University of Kansas Cancer Center.

Karen contacted the KU Bone Marrow Transplant Clinic and told them that she would like to move forward with preparations for a stem cell transplant. I received the following email from the transplant coordinator on October 1st:

I  hope this finds you well.  I have just spoken with Karen who informs me she is willing to proceed with the transplant.  Are you still on board with donation? 

 She is coming back to discuss her decision with a physician  within the next few days.  They will be very firm about her commitment to this treatment. 

If she feels ready to commit we would be able to proceed with her pre-transplant work-up  within a few days.  

I am looking ahead to some potential dates…if you were here for your labs, etc on 10/19, Karen would consent on the 22^nd and admit to the hospital on the 23^rd then transplant ( and your collection) would be on the 29^th.  You could travel home the 31^st.  Your neupogen injections would be the 25^th thru the 28^th.

Please let me know your thoughts and please let me know what questions you have!

 

I was just recovering from a stomach virus when I got this email. I didn't think Nurse Maxwell REALLY wanted to know my thoughts on this day. I was disappointed that the medical tests that I had done in May would have to be repeated. That meant I would have to be away from home for two full weeks.

 

I reserved a ticket with Southwest Airlines to fly from Houston to Kansas City on October 17th and return on October 31th. I found that reserving flights with only two weeks advance notice could be a real challenge. I searched for an open flight that would not cost me an arm and a leg. I settled on a ticket flying from Houston to Kansas City via Chicago and flying back to Houston from Kansas City via Denver.

 

On October 13th, I was shocked to get the following email from Nurse Maxwell;

 

I am sorry but I am going to ask you to delay your arrival and I am cancelling your appointments for next Monday.  During the team meeting this afternoon this decision was made by the physician team.  I will let you know as soon as I can when we will be able to reschedule.

 

I called Karen to ask her what was going on with the schedule. She said she didn't know anything about this cancellation but would get back to me as soon as she could get some information.

 

Karen discovered that she had missed an appointment with a doctor the day before. The problem was, this appointment was not on her printed schedule. The clinic said they had confirmed this appointment with Karen on the telephone, but Karen did not remember getting a call.

 

At first it looked like the transplant would be postponed because of this scheduling blunder. This uncertainty was making me crazy. I did not want to cancel my airline reservations if the transplant was just postponed a few days. I made several calls but had trouble getting a satisfactory answer. It was finally decided that they would go ahead and harvest my stem cells on October 29th, EVEN IF Karen was not able to have the transplant on that day. My stem cells could be frozen and used for the transplant at a later date.

 

I had a good flight to Kansas City on October 17th and enjoyed some time with my family that weekend. Karen and I reported to the Bone Marrow Transplant Clinic on Monday morning. The doctors had reviewed the results of a CT scan of Karen's lungs that had been done the previous week. The scan showed something in her lung that had to be investigated before the transplant could be done.

 

The doctors decided that there would be a better chance of success if the stem cell harvest and transplant were done on the same day.

 

This was the second time the stem cell transplant had been cancelled. I was beginning to wonder if this transplant would ever happen. Karen posted the following message on Facebook:

 

News Flash! Yet another at least 2 week delay with the stem cell transplant. They found what appears to be a fungal infection in one of my lungs, so that must be addressed now before starting the transplant procedures. Pray fungal infection be completely gone in 2 weeks.

I stayed in Kansas City and accompanied Karen to her doctor's appointments this week.