BMT + 100 days

Actually my 100th day since the bone marrow transplant passed a few days ago, so I have made it pretty far since entering the hospital on May 1. I had my 9th bone marrow biopsy on Thursday when they tried some new needles which seemed to work better. My biggest problem with the biopsy is lying in a cramped position which affects my arthritic knees. The quicker it goes, the better. I get some results back on Tuesday but don't expect any surprises.

I am feeling much better the last couple of weeks and am starting to get out. Did some shopping for a car battery and carpet for our washroom. Dr says I can stop using the mask and go to church on Sunday. Hope to see some of you there. We also plan to take a trip to the cabin in Bemidji next week. This will be the first time for me since Andrew and I were there in April and saw the ice go out. All of my care givers go back to teaching or attending school in a couple of weeks, but I am getting pretty independent and now driving as well.

While I am proceeding with applications for long-term disability and social security, I may be back to work before mid-October. Still need to taper medications and see how I react to the changes plus build up my endurance. A short trip out shopping or working around the house still tires me out. Still need approval from the Dr before going back to work

BMT + 3 months

It will be three months tomorrow since the first day of my BMT on May 8th. Besides the GvHD which seems to be coming under control, I am feeling pretty good. I have stopped losing weight and starting to gain again. Due to the prednisone, I have an appetite, somewhat uncontrollable. I am starting a taper of the prednisone from 90 mg every day to 40 mg on alternating days. I have little nausea and normal bowel and urinary functions.

My blood counts were all within reason today though platelets and hemoglobin are still a little low. I did not need any fluids today, but there is still a question about a possible blood infection. So for the first time since May 2, all tubes have been removed. The PICC line that was put in several weeks ago was removed so next time they will start picking me with IV needles again.

But for the first time, I don't have an appointment for a whole week. The Dr says that I can even leave town and travel to the lake cabin in another week. Possibly in a couple of weeks, I can get out in public as well. It all depends on how things improve further. I did make it to the neighborhood party this evening though wore my mask and did not shake any hands.

35W Bridge

Just a note that we are all safe after the collapse of the 35W bridge yesterday. We had many calls from relatives since we drive close to it for every doctor appointment. We drive down either Washington Ave or University Ave near each end of the bridge though rarely cross the 35W bridge itself. Just last week, Anna and I drove across as we detoured to stop at the Dinkytown post office. Now have to contend with detours on the Washington Ave side from I-94. Our prayers go out to all the affected families.

I just got back from an appointment where things are going better still. Got some more fluids and they took some more blood cultures to check on the previous infection. I am back on GenGraf since my kidney function has improved and will start a taper on the prednisone next week.

GvHD + 84

Only 9 days since last posting so doing better with only 4 appointments to report. Still battling potassium and creatinine levels in my blood, indicating possible kidney problems. So I get IV fluids on each visit and need to keep drinking more water. There have also been more adjustments of medicines to help out. The prednisone is helping my appetite, but I still don't have my taste buds back. I have lost a few more lbs so my gut is probably not absorbing enough yet as well.

As part of the GvHD treatment, I am participating with a Fred Hutchinson Research Study where I either get MMF or a placebo along with the normal treatment. This is another 8 pills a day, though they could be what I took during the engraftment phase. This study could last up to two years and is meant to determine whether MMF helps in the GvHD phase. Note that the study is not listed at the web site so may be closed to participating research groups.

Not sure when I will be back to work. Earliest may be 2 months due to immunity problems and need to stay relatively isolated from people. Otherwise, I am feeling much better and getting things done around the house.

Hospital again + 75

Sorry that it has been almost 2 weeks since I posted. The week of 10th, I was into the clinic everyday and couple unplanned to get fluids. Most of the tests were negative for GvHD except for the D-Xylose test that I had last Tuesday. Just got results back today from Mayo Clinic and it definitely indicated GvHD. I am now on 90mg Prednisone per day and added CellCept back for treatment as well. Got to drop Ursodiol but added 4 "horse" tablets of Bactrim each day.

Also the clinic had taken blood cultures for several days starting the 13th. They got the first results back on Tuesday (after I got home from a day of D-Xylose) and had me go straight to the hospital. I didn't feel too bad but Drs were worried since it was a very septic infection in my blood. On Wed, they pulled out my central line and ran cultures on that as well. On Thurs, they ran a PICC line which accomplishes the same purpose as the old central line. It hangs out of my right bicep area down to my elbow, dangling frrom under any short sleeve shirt. I got out of the hospital about 1pm on Saturday and was back at the clinic at 8:30 this morning. Already have appts for Monday and Tuesday and probably more this week.

It is good to have some confirmation of why I have not had an appetite and I have lost weight. Official weight from this morning was 197 lbs, 70 lbs less that my bloated high back in May and 55 lbs less than when many of you saw me last.

Thanks for all your prayers. Last Monday, after my sister came back from a 2 week mission trip to Brazil, we had a family prayer meeting at my house. Little did we know that the blood culture test that may have saved my life was already underway. Just a few days later and results could have been much different. God works in mysterious ways.

Day + 63

Well, I went down hill after Friday and had to go into clinic on Monday for some more magnesium and fluids. This helped me some but now I get more blood on Wed. I saw the Dr again today and will again on Thurs.

Other than hemoglobin, my blood counts are ok. Dr. also reported that my last bone marrow biopsy looked good with all cell lines growing well and still showing engraftment. Since none of the tests confirm any acute GvHD, the Dr ordered a lip biopsy which was done this afternoon in the Dermatology Clinic. They took a piece of salvia glnd from inner lower lip and a sample of some flaky skin. They also examined my whole body for anything suspicious.

Dr. thinks that I may have chronic GvHD which normally occurs after 100 days. If it is cGvHD, treatment would probably be Prednizone and could continue for several years.

Day + 59

What a difference a few days make since I have been feeling much better since Tuesday. This was somewhat tempered by getting up early this morning and having both a sigmoidoscopy and another bone marrow biopsy. I still have little appetite but diarrhea and dry mouth have let up.

The initial sigmoid test was negative for GvHD though samples were taken to be analyzed. Other tests of stool, urine and blood culture have also been negative. Blood counts are ok except for the hemoglobin which keeps dropping. I am also now taking eye drops for dry eyes.

The bone marrow biopsy went very well this morning, taking 1/2 the time of the last. The difference was experience of who did it and use of a bigger (8 gauge) needle. I have my next Dr appt next Tuesday when I will learn more from the biopsies that I had today.

GvHD, in answer to Lori's question on the June 12 post, is basically when the new donor white blood cells attack rapidly growing host cells. This is beneficial when the the attacked cells are remnants of previous cancers (tumors). It it not pleasant and can be life threatening if the cells are GI tract, lungs or liver. Skin or eye GvHD can also occur.

For Joyce, my top rating on fireworks, viewed on a 46" HD TV, is for Boston. Of course, the only other one I watched was New York. NY was 30 minutes long and seemed to be launched from a broader location. Boston was only 20 minutes and seemed more concentrated. Both were choreographed to music, but you can't beat the Boston Pops Orchestra for smooth medley transitions. I especially liked the Sesame Street song synched with fireworks in the shape of a toy block or the numbers 2 and 3. NY synched those with "Take me out to the ball game". Over all, I would have much rather been with my son and daughter in Bemidji, watching their fireworks from the beach.

Day + 56

Well, the GvHD question is open again. I was in for an appt this morning after generally not feeling too good the last few days. I have been fighting bouts of diarrhea on Sunday and Monday, but am thankful clear at the moment. Didn't sleep very well last night because of dry mouth.

My creatinine has been high due to the diarrhea and lack of kidney function so I still try to drink at least 8 cups of water a day. I essentially have no appetite but try to eat a variety of food, never able to finish even 1/2 a normal portion. The clinic gave me more magnesium and fluids IVs today. I was told to come in Thursday as well if I have more diarrhea and dry mouth.

Any way, I had a stool sample, a urine sample, and a chest x-ray plus special blood cultures taken. X-ray was ok; no fluid in lungs. I go in Friday at 7:30am for a sigmoidoscopy followed by another bone marrow biopsy. I also had a Schirmer test for dryness in my eyes. This is done by placing a piece of paper under the lower eye lid and measuring how many tears are produced.

I look forward to my July 10th appt to get the results of all these tests and determine what we do next.

Keep looking up!

Day + 51

I was to the Clinic twice this week, once on Tuesday and then today. On Tuesday, we learned that the endoscopy showed no GvHD in the upper GI tract but I was still having some diarrhea so I was told to obtain another stool sample. My hemoglobin was down to 9.1 the lowest it has been since before the BMT. My creatinine level was very high reflecting lower kidney function so I also received some IV fluids while at the clinic. The Dr also dropped the GenGraf for a few days and lowered the Acyclovir.

So today I received 2 units of blood (rbcs) and some more magnesium. My creatinine was down and I have had little diarrhea so was not able to get a sample. The Dr has now restored the GenGraf at a lower level and the Bactrium which I also did not take this week.

I was tired due to the low hemoglobin the last few days but my digestive system seems a little better. We are in a period of balancing the side effects of the medicines versus the benefits. Drs say the fluctuating hemoglobin is still ok this early in the recovery, but I worry that my old autoimmune system is still in effect.

Hope to learn more next week after another bone marrow biopsy on Friday July 6 plus a regular appt on Tuesday July 3. There will be no time off on the 4th for me; I will be here popping about 30 pills a day.

Day +45

This is my second report this week in only four days. It has been 45 days since the BMT and possible GvHD is still under investigation. The stool sample from last week was negative, but the results of endoscopy on Tuesday were less certain. I will get a final report on the endoscopy next Tuesday.

I still don't have much appetite and feel nauseated after eating and taking all the pills. I am still fighting diarrhea and urination every hour. I was supposed to have a Dr appt today, but felt weak and tired yesterday so went in then instead. My hemoglobin was 10.7 so no transfusion was required. I did get a liter of fluid while I was there and feel a little better today. My next appt is on Tuesday

Day +41

Hopefully, I can get a status post out more frequently, but it seems like weekly now. It has been 41 days since the BMT and I may be in a GvHD phase now. Last week, I had three appointments and spent over 14 hours at the clinic. Thursday stretched out with a decision to give me fluids and a blood transfusion. My regular Dr is on vacation so the PA thought they could get the blood in before we left for the day. The blood bank reported back that they still needed more time to match my blood because I still have the extra antigens that existed before the BMT. It is unknown whether those will be eventually cleared up. So we were back in on Friday for another 4 hours. Both the fluid and blood have perked me up some over the weekend

There have been no results of the stool sample from last Thursday and I have an endoscopy scheduled for tomorrow. Both of these should answer part of the GvHD question.

GvHD + 35

Sorry for the delay in posting but things have been pretty boring. Each day seems like the next, but today may be the start of a new phase. I have been tired recently, napping several times a day or falling asleep watching television. I now see the doctor about twice a week and am gradually reducing medication (now down to about 30 pills a day).

After a shower this morning, we discovered a rash on the inner side of my right thigh. Doctor also ordered a stool sample which I must deliver on Thursday. There has also been some talk about an endoscopy to check my digestive tract. I am still having problems with nausea and lack of appetite and have lost over 25 lbs from what I weighed before checking into the hospital on May 1.

It has been 35 days since the BMT and I am thankful that the new bone cells have engrafted and not all my hair has fallen out. Now it looks like the negative symptoms of GvHD have started.

100% Donor cells

The results of my bone marrow biopsy shows 100% total donor engraftment. The doctor even seemed surprised when he pulled up the results on the computer this morning. This means that my brother's stem cells have taken over and eliminated my old defective bone cells. My hemoglobin reached a high of 11.9 and platelets have increased from 51 to 79 in the last 6 days, more evidence of the new cells. On the negative side my magnesium was down so I needed an infusion today and my creatinine is up to 1.68.

The challenge now is to manage all of the medicines to prevent GvHD (Graft versus Host Disease) as well as getting my normal digestive functions back in order. My weight was 235 lbs fully clothed this morning versus about 248 on check in to the hospital and 266 with the fluid retention and hospital gown. With all the pills and diminished taste and saliva, I still cannot eat normally and feel nauseated most of the time.

But isn't God great! He guided me through the valley of the shadow of death and will continue to heal the rest of my body.

BMT + 25

Well, its Saturday and I did not have to go to the Dr today. Yesterday, the Dr said that everything was normal, at least as good as expected for me at this time. My hemoglobin and platelets are still below that for an average person, but still where they should be for a BMT patient. Of course, as long as I am taking all these pills, it is a propped up normal. They gave me more magnesium on Thursday but did not need to on Friday. I get the day off tomorrow as well.

The negative of not going into the clinic is that we have to flush my central line at home. Andrew did it this afternoon, but I was a little nervous.

On Friday after my appointment, one of the clinic Drs asked me to talk to a patient who had completed a week of tests to qualify him for a BMT, but was still not committed to moving ahead next week. This young man discovered he had myelofibrosis last Sept. He has an unrelated donor, but is getting a mini-BMT similar to mine. I related my experiences and directed him and his wife to this blog for further details. I also suggested that they setup a CaringBridge site. I gave credit to God and the power of prayer. Please pray for Keith as well since he decided to move ahead with the BMT.

BMT + 22

Today was another long day at the BMT Clinic. I forgot to mention yesterday that I had a chest x-ray which the Dr said today showed fluid on my lungs. He ordered an EKG and an echo cardiogram which I had this morning. He wants to rule out any heart problem that might cause the lung fluid retention. We won't know results until tomorrow.

I also had an infusion of 4g of magnesium today. That's the equivalent of 10 pills. I am now taking 4 pills a day at home. These two seem to be the major issues for the moment while we wait for results from the bone marrow biopsy.

With travel, we were away from home 6 hours and then behind on medicines. My wife drove me home and then had to pickup my daughter (backup support) at the airport. Tomorrow, my son graduates from high school while I watch on cable TV. Sunday afternoon, he has a party at church while different family members take turns visiting with me about 1/2 mile away. It is great to now have both daughter and son to help in the home care. My wife returns to teaching school for another week. I feel like a king in my throne (recliner) while people do things that I cannot do. Most are things I could do, but need to minimize exposure to germs.

BMT + 21

It has been three weeks since the the BMT and 4th day home from the hospital. It was Bone Marrow Biopsy day, the sixth one that I have had. This one was the longest and most uncomfortable because of my position on my nauseated stomach for over an hour, plus numbness forming in my neck, hand and feet. There is a a lot of scar tissue in my hip bones and it is getting more difficult to get a good sample. They had to drill into my hip bone three times. The pathologist who is going to examine the marrow did the procedure so we know he got a good sample.

I also had another platelet infusion as a precaution against bleeding. It is still uncertain whether the BMT will also cure my anti-phospholipid syndrome problem. blood counts were about the same and I lost another 2 lbs of fluid. From the max of about 20 lbs fluid gain, I have about 4 left to lose.

I take about 49 pills a day plus one injection. The cyclosporine (GenGraf) was reduced from 250 mg to 200 mg twice a day. I take pills about 6 times a day, trying to eat some before each session.

At home

It is great to be at home and my condition has improved. My creatinine level has decreased some more to 1.49 while my hemoglobin has increased to 11.1 probably the highest in 3 years. White cell count is up a little in normal range while platelets are still struggling at the low end. Most importantly, my fluid retention is decreased and I weigh about 6 lbs less than when I left the hospital, but I still weigh about 6 lbs more than when I checked in.

I keep feeling better and eating better every day, but still feel nauseated after eating just a small portion of food. Taking all the pills don't help either. My taste buds, saliva generation and smelling still have not fully come back.

My wife and son are great support with all kinds of little supplies to buy or find for me. The brake light on the van and the ceiling light in the bedroom burned out. The furnace filter needed to be replaced. The lawn needed to be mowed and plants watered. A lot of things that I cannot yet do myself.

Going home

Groundhog Day is over. It is the first day of Summer. My creatinine level is down and I am going home. My wife is working today and there is a lot of follow up work to do here, so I will not leave until 5pm.

I still need to get a list of everthing to do at home and all the supplies and meds from the hospital discharge pharmacy. It will be great to sleep in my own bed, use my MacBook Pro laptop with the 20" LCD monitor and watch my HD wide screen TV while lying back in my recliner.

Each of the last three days, I have lost hair while taking a shower. The picture above was just taken with my laptop camera and shows the current state. Seems like the dark hair has fallen out and I am left with the grey. I am also still shaving so maybe I will retain some hair on my head.

I will still be coming into the clinic every day and updating my blog, so check back. I appreciate all of your prayers and support over the last 25 days while I have been here at the hospital.

Groundhog Day 2

I will be here at least another day. My creatinine dropped only from 1.9 to 1.8, not enough change to let me go. They are putting me back on a reduced dose of cyclosporine (GenGraf) and will reevaluate again tomorrow. I have also had about an hour of magnesium IV each day.

More hair fell out yesterday when I showered, but still have enough to say I am not bald. I shaved again this morning so that is still growing. To bad that I cannot switch those two.

Groundhog Day

It feels like Groundhog Day, the movie. where Bill Murray keeps experiencing Groundhog Day over and over.

As I speculated, my Creatinine level, which indicates kidney function, is too high this morning. Creatinine went up from 1.68 to 1.94 and needs to be going down before I am discharged. They are stopping one medicine to counter GvHD for the day to see if that affects it. Otherwise, we repeat yesterday and see what the Creatinine is tomorrow. So I will be here until at least 5pm on Thursday.

Other blood counts are up slightly, which is good and shows bone marrow is functioning. Another bone marrow biopsy next week will show whether it is my brothers bone marrow. But the fact that Hemoglobin has been over 10 since May 11 is a good indicator.